Evidence Compilation

Subject:

The Seclusion of Autistic Children and Others With Learning Disorders in ATUs and Treatment Facilities in the United Kingdom

Property of

W. Penn Little

155 N Wacker Drive Suite 4250 Chicago, IL 60606 (312) 560-0846 [email protected] Penn Little

Re: Testimony

Joint Committee On Human Rights Thu, Jan 10, 2019 at 6:02 AM To: Penn Little Cc: "BOO FRAGA, Miguel"

Dear Penn,

Thank you for letting us know you are unavailable for testimony on that date. The Joint Committee on Human Rights is still grateful to you for being in the hearings and for your interest in its work.

If you are willing, the committee requests that, in lieu of testimony, that you provide a written report of your findings, research, opinions, and recommendations for review. Please focus on the relationship with U.S. companies and the role they play in Britain, as well as how this is a financial issue (as you elude to this quite often in your publications).

I wanted to alert you to the fact that the Committee is continuing its work on this topic and has issued a call for further evidence, of which the evidence you provide is especially intriguing and critically important to our assessment.

If you have any questions please don’t hesitate to reach out.

Katherine Hill Committee Specialist | Joint Committee on Human Rights House of Commons, London, SW1A 0AA [email protected] | 020 7219 3472 | Text relay: 18001 020 7219 3472

www.parliament.uk | @ukparliament | @houseofcommons

Supporting a thriving parliamentary democracy Date: February 4, 2019

Title: Recent Evolution of U.S. Healthcare Policy and its Role in Human Rights Violations in the United Kingdom

Attn: The Parliament of the United Kingdom Joint Committee on Human Rights Chair: Harriet Harman MP Members: Fiona Bruce MP, Karen Buck MP, Alex Burghart MP, Joanna Cherry MP, Baroness Hamwee MP, Baroness Lawrence of Clarendon, Jeremy Lefroy MP, Baroness O’Cathain, Baroness Prosser, Lord Tremble, Lord Woolf

CC: Matt Hancock MP, U.K. Secretary of Health and Social Care

Re: Conditions in U.K. Autism Treatment Facilities

Author: Penn Little, Chicago, Illinois, United States (CV below) Founder and Managing Partner, Bar Nothin’ Capital Management LLC Contributing Writer, Seekingalpha.com and Forbes™

Expertise: Healthcare Finance, Quantitative Market Research, Behavioral Healthcare Operations Education: M.B.A. (Finance) The University of Arizona; B.A. (Economics), The University of Oklahoma. Experience: Co-founded and exited Crestview Capital Partners LLC, a buy/build asset management strategy focused on scaling and amplifying the effectiveness of quality community mental health counseling, to a premier global private equity firm. Simultaneously served as Crestview Managing Partner and CEO of its Illinois-based operations, leading over 50 direct-care and administrative staff (2014-2017); Served as Partner and Director of Operations of C4 Peak Consulting Partners Inc., a behavioral health management consulting firm (2013-2017); Served as Director of Admissions and Business Development of Prescott House, Inc., a provider of extended-behavioral health care to males over 18, open since 1988 (2011-2013).

Author’s Disclosure(s): I received no financial compensation for the composition of this report, and have no financial benefit, no business relationships with, nor any conflicts to disclose surrounding any of the parties or companies listed in this report. In terms of facts offered, I attest to the integrity and validity of this information. Other information, including some opinions, are predicated on my beliefs, based on my expertise in the sector and in-depth research on the subject. Some information contained in the section(s) entitled “The Time Correlation,” “The Marxist-Smith System and Brexit,” and other areas of this report are well- informed opinions, albeit of a speculative nature. Some of these opinions are echoed in the recommendations. This report comes in response to a request of the committee regarding information sought surrounding conditions in autism treatment centers and ATUs in the United Kingdom. My colleague, Katie Mikles, and I were present at the committee hearings held regarding this issue in London on December 12, 2018.

1 Executive Summary

The information herein stems from an investigation of alleged abuse and neglect of patients at U.S.-based debt-ridden healthcare companies in the U.S. and the U.K. This report addresses the need expressed by the Parliamentary Joint Committee on Human Rights regarding information pertinent to the conditions in autism treatment centers (ATUs) in the United Kingdom.

This report expresses the opinion these human rights violations in the United Kingdom have transversed from rare, isolated incidents into a tremendous amount of extended stays in environments where management also seeks to reduce costs to a minimum. The bulk of these extreme cases have persisted for two to three years now. This dates back to roughly the point in which Brexit was born and, most notably, is simultaneous to when many U.S.-based providers entered the U.K. market.

Two pieces of legislation, no regulation, an American ‘profit party,’ and the sudden realization it was over, domestically-speaking, led them across the pond. This is much like a virus would invade an explorer’s ship in a new land 300 years ago. Only then did the locals adapt the practice that had become, in recent years, commonplace in America: warehousing people for money.

This report supports the shift toward increased community-based care availability for autistic children. In addition, this report further supports increased and/or intensified scrutiny placed upon petitions for payment to treat patients remaining in care beyond 30 days, as opposed to 12 weeks. Furthermore, this report strongly recommends the committee promote the full prohibition of payments for mental healthcare services by the NHS (or any U.K. government entity) to U.S.-based healthcare entities.

Lethal Strategy and Violent Bipartisanship

The violation of rights and seclusion of autistic children in U.K. facilities treating autism (ATUs, et al.) is occurring. The occurrence is a result of poor U.S. regulation and free-trade avenues between the U.S. and the U.K. Isolated incidents aside, the bulk of this practice has increased in unison with the amount of money paid by the NHS to U.S.-based healthcare providers. The amount of U.S.-based operations in the U.K. spiked in 2015-2016, mostly through mergers and acquisitions. Two notable examples would be Cygnet (acquired by Universal Health Services (Nasdaq: UHS) in 2014 and The Priory Group (acquired by Acadia Healthcare Company, Inc. (Nasdaq: ACHC) in early 2016.

Differing national approaches to healthcare, substantial recent shifts in U.S. domestic healthcare policy, U.S.-U.K. foreign policy, and a diplomatic/free-trade alliance with the U.K. have all allowed a very opaque, but understandable problem to materialize. From 2014-2016, many U.S.-based healthcare companies (or their financiers) recognized the impending inability for providers or groups thereof to adequately service the debt with revenues from domestic U.S. operations alone. The U.K. is considered quite liberal and patient-centered, and as the recently ousted former head of Acadia Healthcare, Joey Jacobs, once said:

In the U.K., a patient’s length of stay is as long as they need to recover. It could be weeks, month or even over a year. Their health care system does not want to see a patient coming back, they want the patient doing well. With the reimbursement system we have in the U.S., oftentimes patients aren’t approved to stay with us long enough to even finish treatment.

As a corollary, America’s legislatively-fragmented, partially-decentralized, vague, and ambiguous free- market healthcare system is one that sees hasty reform far too often for regulators or ombudsmen to keep

2 up. This, the same system that houses 91% of the globe’s investment in that particular economic sector, and it’s still an undeniably broken system.

U.S.-based providers have seen their debt costs increase due to global monetary policy as well as emerging market inflation in nations such as Turkey, for example. The U.S. has seen sharp revenue reductions in healthcare. The rising interest rates due to the inflation compounded with reduced reimbursements domestically have resulted in quality reductions and the need to seek out new revenue streams.

The natural reduction in staffing and quality has resulted in patient deaths, most notably in the area of substance abuse treatment of children, young adults, and the elderly. The most visible, however, from a media standpoint, is the seclusion and long-term lockup of autistic children in the U.K. The latter is considered less stigmatic.

Also, visibility can be afforded to the polarizing fundamentals of branding that exist in unison and correlation with the differences in the two governmental healthcare structures. Individually-branded care conglomerates are the norm in the U.K (e.g., Priory and Cygnet), as opposed to the U.S. Specifically, individually branded U.S. hospitals are mistaken for standalone entities. It is challenging to recognize the problem without true incentives and vast knowledge of policy or business ethics, for that matter.

In both countries, the exploitation of loopholes, as alleged, have elevated to extreme levels of audacity. Some U.K.-based companies only followed suit and mimicked the previously unseen opportunities for abuse of NHS payments. The primary example is this very issue that, according to the families in the hearing, costs British citizens a globally-unparalleled 15,000 GBP per week, per patient. Much of this is converted to U.S. dollars, ultimately paid central banks in the form of interest, or to the executives in the form of compensation and bonuses.

A bold sign of terminating payments for these services would serve as the end of the suffering for many lives in both countries. Presently, they remain jailed in constant fear, unable to escape the grip of a conundrum they (in no way) can understand. Regardless of fallout, this is the clearest and least destructive path to a different and compassionate approach. This testament comes from a core of my own experience of knowing the fear that exists when entering a facility hoping to be better, to feel better, and find hope in which to cling. For me, if confronted with anything but compassion in this setting, I would have a skewed viewpoint on the world as well as skewed concepts of hope. Then, on top of that, more emotional trauma in a setting in which studies show we must be resolving trauma, not inflicting it.

U.S. Roots

Around 45 days ago, I traveled to London with my colleague, Katie Mikles, to perform some fact finding, for articles1 I have been writing for SeekingAlpha.com (a reputable U.S.-based edited finance journal) and Forbes™. To be specific, it was this committee’s hearings to discuss conditions in facilities that treat autism and learning disorders that attracted me to London to learn more information. I was made aware of these instances while reading the articles recently penned by Ian Birrell for The Mail on Sunday.

My goal was to find out if these services were the life support keeping Acadia’s debt serviceable. Our research has led us to believe that Acadia could be overstating their earnings and the banking sector may be artificially inflating the stock price to preserve the interest-based revenue streams from this and other

1Little, Penn. SeekingAlpha.com, Seeking Alpha, 13 Dec. 2018, 5:48 PM ET, https://seekingalpha.com/article/4228230-kids-cash-cows-abuses-u-k-mental-health-centers-including-acadias

3 private equity investments that could rely on Acadia’s position as the only notable (size) standalone publicly traded provider (in terms of simply offering behavioral health services as opposed to acute mental healthcare).

Specifically, Birrell discussed the inhumane treatment and exploitation for profit of this population. They have often been locked away, netting, again, nearly $20k per week for U.S. companies, notably two public ones. The one I’ve published nine investigative articles about, recently, is Acadia Healthcare Co., Inc. (Nasdaq: ACHC), notably, also the world’s largest provider of substance abuse services. The market cap has been eviscerated by 33% since I published the findings of a 14-month investigation2. The day following our return home, we believe that our reporting from London on this issue, along with the previous articles, led to the ousting of their CEO, Joey Jacobs.

The undeniable truth is that the United States Congress’ House Resolution 1124-117, the Mental Health Parity and Addiction Equity Act (rider legislation3 to the Troubled Asset Relief Program, sometimes known as ‘MHPAEA’ or ‘parity’), passed in 2008, served as the core commencement of this problem. Then, the expansion of coverage to millions of previously uninsured Americans through the passage of the Patient Protection and Affordable Care Act (commonly known in the U.S. as “Obamacare” for President Barack Obama, its signatory) exacerbated it.

The result was a $3 trillion (£2.27 trillion) health insurance industry being mandated to pay for a lifetime disease with no cost-effective, affordable solution. Moreover, the industry was so small that it was easier for private insurers (where the big money was once made) to allow it to be a fully-funded mandate with little to no regulation in a previously all-cash industry. The fraud began to thrive in this economic sub- sector in which “treatment” is very broadly defined. The tipping point came during the summer of 2015 in California when then-Attorney General-now-U.S. Senator, Kamala Harris, indicted American Addiction Centers (NYSE: AAC) for murder.4

That indictment served as the tipping point for the mental healthcare sector profit binge and has resulted in sharply declining revenues to the point that insurers ignore the Parity Act. Understandably, reimbursements have sharply declined since that year.

On October 12, 2017, President Donald J. Trump signed Executive Order 13813 (The Executive Order Promoting Healthcare Choice and Competition), which canceled the subsidies previously paid to predominantly-unentitled American citizens. In late 2017, congressional tax reform extracted the “individual mandate,” technically a tax that had existed as part of Obamacare (determined to be a tax by Chief Justice John Roberts’s ruling in National Federation of Independent Business v. Sebelius (2012). The repeal of the individual mandate gave citizens the freedom to choose if they want insurance or not, reducing the overall number of insured Americans.

This newly-minted tax reform also resulted in a lawsuit in which the plaintiffs exploited the fact that the “tax” no longer exists, among other factors that led to a federal judge to deem Obamacare an unconstitutional law last December. It is my informed belief and understanding (based on no formal legal training), that due to its politically conservative-leaning nature, the New Orleans, Louisiana-based 5th Circuit Court of Appeals is unlikely to reverse the Texas U.S. District Court’s decision. This ruling places

2Little, Penn. SeekingAlpha.com, SeekingAlpha, 16 Nov. 2018, 8:57 AM ET, https://seekingalpha.com/article/4222788-acadia-healthcare-scary-findings-14-month-investigation 3 U.S. Senate Definition: Informal term for a nongermane amendment to a bill or an amendment to an appropriation bill that changes the permanent law governing a program funded by the bill. 4 Vardi, Nathan. “The Company And Corporate President Indicted For Murder.” Forbes, Forbes Magazine, 1 Aug. 2015,www.forbes.com/sites/nathanvardi/2015/07/31/the-company-and-corporate-president-indicted-for-murder/.

4 the Affordable Care Act in jeopardy. It simply exacerbates factors surrounding an overall thesis of insufficient revenue to meet credit obligations obtained under the expectation of various entitlements and unrealistic long-term revenue expectations.

In the aforementioned article, I also discuss the stories of several families who lost loved ones in behavioral healthcare facilities in the United States in 2018. Brandon Nelson, aged 26, died in an Orange County, California treatment center. His family is from Santa Monica, and I visited with them at their home on December 26th, 2018. This, in response to finding an article in the Orange County Register, discusses how the Nelsons have connected the financial dots, noting this fraud is a “violent crime.” Sadly, they are just one of many of these tragic stories suppressed by greed and enabled by stigma in both countries. California’s Bay Area (a metropolitan statistical area consisting of 10 counties and roughly 8 million people) alone has seen 32 deaths since 2012 in behavioral health facilities.5

Ultimately, it is my belief that U.S. companies latched onto the NHS and other U.K. public revenue checks to secure sufficient revenue streams. This is because many publicly traded and investment grade healthcare companies cannot easily service debts, and soon they will not be able to at all. Only mirroring the highest quality models of care, observed globally (community-based care), compounded with family input and the termination of U.S. company funding, can allow positive change to occur.

The Major Examples

The following two U.S.-based behavioral healthcare providers have been scrutinized for alleged abusive practices in both countries. Ian Birrell categorized both into a group of providers dubbed “The Profiteers of Misery.” This term was used in his November article highlighting outlandish compensatory rewards amidst the allegations on the subject in The Mail on Sunday.

Universal Health Services (Nasdaq: UHS)

According to the U.S. Securities and Exchange Commission (SEC), UHS owns/operates 134 inpatient behavioral healthcare facilities in the U.K. as well as two outpatient facilities. ● UHS is presently under investigation by the U.S. Department of Justice for various abuses of patients that include sexual assault, negligence, and wrongful death.6 ● The company, based in Pennsylvania, is a component of the S&P 500 Index (SPY). ● The company acquired U.K. provider, Cygnet, on 9/26/2014 for a purchase price of $335 million (£254 million), and according to a UHS press release:7

Cygnet has a national footprint and is one of the largest independent providers of behavioral health facilities in the UK. They are the leading specialist mental health provider in the UK which includes services for children, eating disorders and autism, among others. They have outstanding customer relationships and a well-established reputation for excellence.

5Vicky Nguyen, Robert Campos, Anthony Rutanooshedech, Jeremy Carroll. NBC Bay Area. Mar 2, 2018. https://www.nbcbayarea.com/news/local/NBC-Bay-Area-Investigation-Reveals-Rehab-Centers-Complaint-and- Death-Records-Difficult-to-Track-475614053.html 6Bannow, Tara. Modern Healthcare. Jul 25, 2018. https://www.modernhealthcare.com/article/20180725/NEWS/180729940 7Press Release, UHS Acquires Cygnet, Universal Health Services, King of Prussia, PA https://ir.uhsinc.com/news- releases/news-release-details/universal-health-services-inc-announces-acquisition-cygnet

5 ● The following are disclosure excerpts that speak for themselves. They are from the most recent “10-Q,” the quarterly financial statements and informational disclosures to investors and the public (filed on November 8, 2018) with the U.S. SEC:

In September 2014, the Criminal Division of the Department of Justice (“DOJ”) announced that all qui tam cases will be shared with their Division to determine if a parallel criminal investigation should be opened.

The DOJ has also announced an intention to pursue civil and criminal actions against individuals within a company as well as the corporate entity or entities. In addition, health care facilities are subject to monitoring by state and federal surveyors to ensure compliance with program Conditions of Participation. In the event a facility is found to be out of compliance with a Condition of Participation and unable to remedy the alleged deficiency(s), the facility faces termination from the Medicare and Medicaid programs or compliance with a System Improvement Agreement to remedy deficiencies and ensure compliance.8

UHS Behavioral Health in February, 2013, the Office of Inspector General for the United States Department of Health and Human Services (“OIG”) served a subpoena requesting various documents from January, 2008 to the date of the subpoena directed at Universal Health Services, Inc. (“UHS”) concerning it and UHS of Delaware, Inc., and certain UHS owned behavioral health facilities…

...Subsequent to the February 2013 subpoenas, some of the facilities above have received additional, specific subpoenas or other document and information requests. In addition to the OIG, the DOJ and various U.S. Attorneys’ and state Attorneys’ General Offices are also involved in this matter. Since February 2013, additional facilities have also received subpoenas.9

The investigation of UHS remains ongoing as of present day.

Acadia Healthcare Company, Inc. (Nasdaq: ACHC)

Acadia acquired the Priory Group from Advent International in February of 2016 for a combination of common stock and cash totaling over $2 billion (over £1.5 billion). Priory went on to acquire Partnerships In Care in the U.K. after being purchased by Acadia.

● Your government sought to limit competition. A ‘Notice of Consultation’ from the Competition and Markets Authority was delivered to Acadia (ME/6587/16) in fall 2016. ○ Acadia sold 22 facilities immediately following this. ○ The aforementioned divestiture was not reported in the U.S. until a 2018 (Q4 ‘17) release filed with the SEC. It was purported as a $0.05 (£0.04) earning per share “boost” in the quarterly release of earnings. However, in the ensuing GAAP10 aligned 10-k filing for 2017, Acadia purported to lose a substantial amount of money: roughly $40 million (£30 million).11

8Universal Health Services Inc. Audited Financial 9Statements Universal Health Services Inc. Audited 10FinancialU.S. Generally Statements Accepted Accounting 11Principles ACHC fiscal year 2017 10-K Statement

6 ● According to the most recent quarterly SEC filing from November 5, 2018, Acadia: ○ Operates 371 facilities in the United Kingdom (8,800 beds) ○ Has over $3 billion (£2.3 billion) in debt and less than $60 million (£45 million) in cash on hand. Those numbers have remained stable since the 2016 Priory acquisition since they have not acquired much of anything at all, anywhere. ○ The Company receives payments from approximately 500 publicly-funded sources in the U.K. (including the National Health Service (“NHS”), Clinical Commissioning Groups (“CCGs”) and local authorities in England, Scotland, and Wales), and individual patients and clients. ○ Acadia classifies its U.K. facilities “into the following categories: healthcare facilities, education and children’s services, adult care facilities, and elderly care facilities.”12

● The company has seen insider holdings reduce from 30% in August of 2015 to below 2% today. ● Joey Jacobs was terminated from his position as Chairman and CEO and replaced as Chairman by a long-time lead director of Acadia, managing partner of the company’s founder, Reeve B. Waud. This occurred on December 16, 2018, two days after I published my article, ‘Kids as Cash Cows: Abuses at Mental Healthcare Facilities Including Acadia’s’ on Seekingalpha.com (a reputable U.S. online finance journal). Debra Osteen, recently-retired former behavioral health division head at UHS, is the new CEO. Osteen was hired the same day Jacobs was fired. ● Since publishing my first article on Acadia on November 16, 2018, the market capitalization has cratered by roughly 30% $700 million (£530 million). ● As of Q3 2018, Acadia states that $752 million (£570 million), or the largest chunk of Acadia’s revenue for the fiscal year 2018, is from the United Kingdom, an overwhelming majority of which is public funding. ● The company was sold by the directors, officers, and other insiders over the last three and a half years, and is primarily owned now by major pension and 401k administrators (cap table provided in the appendix). The largest owner is T. Rowe Price at 15%13. All the while, it teeters on the edge of bankruptcy, relying on the British taxpayer dime to keep it afloat. This is not for the profits, but more so to keep the investors happy, as good margins are a foregone conclusion in the midst of extreme costs. ● Reeve Waud, the founder and present chairman, has made over $638 million in his name from stock sales alone, according to the SEC. The last two periods, he has sold stock in the “quiet period” prior to poor earnings releases. He just bought a mansion in Maine, considered to be the largest mansion in the state. ● Acadia is presently subjected to dozens of civil claims at various sites that mention patient abuse, understaffing, sexual abuse, and negligence, to name a few items.

The Timing Correlation

It is my understanding that the intent of ATUs is to stabilize and assess patients, and limit the sectioning orders to 12 weeks. This is fairly standard. However, when first reading the October 27th article by Ian Birrell, a well-published and decorated journalist who writes for various papers including The Times, The Wall Street Journal, The Daily Mail, The Observer, The Daily Telegraph, The Guardian, The Sun, The

12 ACHC Financial Statements (10Q Q3 2018, et 13al) See Appendix A. Courtesy: Bloomberg Terminal.

7 Spectator and Mosaic14, I was, sadly, not very shocked to learn that these patients were being held for long periods of time. This reaction comes from my own empathetic perspective, honed from the experience spending a relatively large amount of time as a patient in a behavioral health treatment center, just over a decade ago. I have worked within the sector in many capacities in the U.S. since 2008. My intent for entry was to give back and to offer some of my stories in hopes of providing more effective and quality-driven care.

Ian Birrell’s articles notate that some of these cases, such as that of Eddie Green, began six years ago. However, only recently, in light of major economic shifts, has the big money from the U.S. infiltrated the market, boosting these instances. Since that time, these instances have increased, so much so that these problems are being recognized. This is also the result of Birrell himself, who has the courage and talent to serve as a voice. That courage and talent, compounded with his role as a father of a child with a learning disorder, has materialized as a formidable megaphone – that which, a growing number of families have become loud enough to find. Together, they have developed into a movement serving as a beacon to attract the attention of many others, including myself.

At the hearings on December 12th in London, we spoke with Ms. Isabelle Garnett. Garnett’s teenage son, Matthew, was mentioned in Birrell’s first piece in the Mail on Sunday. She has observed proven success for her son in community-based care. Matthew’s stay was supposed to be limited to 12 weeks, but his mother still waits and it has been two years. In a simultaneous timeframe, “Bethany,” according to her father, “Jeremy” (names changed in Birrell’s work as well as at the hearings to protect identities), has been away for 18 months. While walking out of the House of Commons, I asked Jeremy if Beth could send a message back to American families (such as the Nelson family that lost a loved one to similar issues in the U.S.) what would be Beth’s words to them? With vigor, he said one word: “fight!”

Without time or need to analyze too much data, it was quite apparent in researching these articles, interviewing families, and seeing the increase in advocacy; the correlation between instances of occurrence has truly boomed in recent years. This hypothesis is simple to someone who has watched it occur in the U.S. Determining the root of this practice is akin to determining how Ebola entered the U.S. from Africa. However, in this case, I would be the infectious disease researcher with Ebola experience, who happened to ride near the carrier on his inbound flight. I see it clear as day due to my dual understanding of this field, medical revenue models, and strategic finance. These are not commonly spliced expertise.

“The Marx-Smith System” Meets “Brexit”

There are two rationales behind the entrance of U.S.-providers into the market that have coincided with the swoon of indefinite seclusions, resulting from temporary sectioning orders.

Last October, at the Peninsula Hotel in Chicago, I met a couple from London, a businessman, along with his traveling companion. I couldn’t permit myself to avoid asking questions in light of our investigation into Acadia and The Priory. They were quick to note that the U.K. loves the freely placed investments, mergers, and acquisitions that the U.S. has adorned the British economy with for nearly four decades. Of course, without a trade deal in light of Brexit, only the rational economic thinker can see the benefits. Most of the motivation behind the referendum is that of blue-collar citizens wading in the carnage that remains in the destruction trail of the irrational businessman.

14 Birrell, Ian. The Mail on Sunday. October 27, 2018. https://www.dailymail.co.uk/news/article-6324559/Families- tell-children-autism-learning-disabilities-locked-away-years-end.html

8 Of course, therein lies the first macroeconomic rationale supporting the market entry in 2014-2016, the rationale of ‘get-in, before they get out (of the European Union).’ The second lies within the quick addiction to easy money that resulted in the U.S. mental health sector during the post-reform years of 2011-2015. The second rationale came from the swift cooling-off period providers in the U.S., but more so their financiers have had to plan to fight in order to keep the profit train chugging along.

For companies liable to investors to increase margins and return nest eggs in greater sum, the concept of for-profit healthcare may seem ridiculous in itself. However, it is not the profit that is the issue. The conundrum lies within the fact that no limits on the corporate practice of medicine compounded with loopholes (created by lawyers in order to reduce costs to patients) have skewed what was originally intended to be a highly regulated and competition-limited industry.

The U.S. system is very much funded like a single-payer system today; however, philosophically speaking, it has resulted in about the same thing you would expect if you asked Karl Marx and Adam Smith to draft legislation together. In 2011, a Libertarian champion of laissez-faire economics, former Texas Congressman and U.S. Army Physician, Ron Paul, was asked a hypothetical question about if society should just let an uninsured citizen die. Part of his response to that question was:15

That’s the reason the cost is so high, it’s because we dump it on the government, it becomes a bureaucracy, it kowtows to the insurance companies then the drug companies, and on top of that, you have the inflation. Inflation devalues the dollar. There’s no competition in medicine, it’s protected by licensure…

- Fmr. U.S. Congressman Ron Paul, MD

Sticking to the Acadia example... Waud bought a mansion in Maine16 and Jacobs bought a portion of a National Hockey League17 franchise during the timeframe in which the 28% reduction in insider holdings occurred. This points to a palpably evident theory that neither of them is aware of the fruits of the labor beneath them. Their intense focus on keeping lenders happy, and the lack of consequences and a zero- interest-rate policy (ZIRP) has meant no consequences for an extended period of time. The drought of consequences has apparently led many entrepreneurs and businessmen to believe that one has to be a vivid thinker with great strategic thought ability to tackle a a ‘competition-limited’ industry.

In short, they have no earthly idea and still may not be able to piece together their role in this atrocious practice. The people who actually have been subjected to this inhumane treatment or their families who have born the sorrow, grief, and fear as a result of this practice are all either dead or in pain – all the while, the bearer of this sword wears a white collar. The butchery, in this case, is the bonuses, profits, or that believed-to-be harmless fancy bottle of scotch with oysters during lunch at Washington’s Old Ebbitt Grill.

In our case, the oysters and scotch are courtesy of someone, oddly enough. convincing you to vote ‘Yea’ to an “opioid package” that everyone agrees on.

15 CNN. “Should Society Let Uninsured Die?” YouTube, YouTube, 13 Sept. 2011, www.youtube.com/watch?v=8T9fk7NpgIU. 16Trotter, Bill. Bangor Daily News. Sep 26, 2018. https://bangordailynews.com/2018/09/26/news/hancock/this-mansion-on-mdi-might-be-the-most-expensive-private- estate-in-maine/ 17Rau, Nate. The Tennessean. Apr 13, 2018. https://www.tennessean.com/story/money/2018/04/13/nashville- predators-ownership-group-joey-jacobs/512844002/

9 The latter argument of the last paragraph occurs without discussing or evaluating the legislation for economic risk and, sadly, does more harm than good in curbing an epidemic – an epidemic that is killing a dozen more on a daily basis than the number of people killed at Sandy Hook, Virginia Tech, and Las Vegas combined.18

The only hope for a brighter future is noticing the very fact that someone even has to schmooze for bipartisan legislation. That truly means there are naysayers out there that must be silenced, albeit small in number. Presently, those oysters, the rebutting constituent’s “mental illness,” or their loved one’s grief, can serve as the steed of doubt upon which we saddle ourselves amidst the bliss of ignorance.

Sadly, but understandably, rising interest rates in the U.S. and Brexit are combated with tremendous firepower. However, since the Industrial Revolution, nationalism seems to take flight in recessions. It is just a result of the fight-or-flight concept in which most people, in mass, must stay home when funds are tight. The diminishing middle class shows a polarizing fight between some seemingly living in the recession versus those trying to diminish rational thoughts and promote a distorted reality of debt and endless free trade.

The same can be said for the families or precious lives in care whose voices are suppressed by greed and enabled by stigma. These individuals are in futile opposition to the individuals collecting cash, believing they are truly “helping people”. This only solidifies the theory that the “cause” has transversed from status as a “business” to that of a “racket” in every sense of the word.

Unfortunately, unless our healthcare systems are correlated or similar, they do not mix well, nor does anybody want to mold our system into theirs when its bread-and-butter strategies debase the practice of medicine in so many ways.

Conclusion

Is there continued upside in the U.K. and, if so, what is it? The simple answer is yes and no. For U.S.- based companies, their only present upside is time and liquidity, and it is simply a short-term upside consisting of “easy money” for the local players (ones not yet acquired by U.S. providers). Truly, no “magic bullet” exists for these U.S.-based providers and, if allowed, the abuse will undoubtedly continue. The costs are too high (due to easy money) and new entrants are emerging in the form of providers or vendors. Again, the NHS is purportedly paying $1 million (£750 million) per annum to lock away one autistic child – it is the easiest money on which a starved industry must prey. Frankly, it is having a feeding frenzy while they are starving everywhere else.

On top of all that, we must also factor in Brexit.

While in England, we co-interviewed Mark Gilman,19 a former substance abuse expert, formerly with U.K. Public Health and the National Treatment Agency for Substance Misuse, and now Managing Director of Discovering Health U.K. In the interview, Gilman stated, “The reason Acadia is adding beds here is for the autism provisions. You can’t make money here in substance abuse centers. We’ve already discovered, those don’t work.”

18 Birrell, Ian. The Mail on Sunday. Nov 10, 2018. https://www.dailymail.co.uk/news/article-6375895/Parents-slam- health-fat-cats-getting-730-000-annually-autistic-child-lock-up.html 19 Mark Gilman Bio: Courtesy: Linkedin.com.: https://www.linkedin.com/in/mark-gilman- 0597012b/?originalSubdomain=uk

10 This just affirms the level to which things have escalated in both countries. Citizens of the U.S. and the U.K. have yet, for the large part, to recognize this connection. It does exist, it is a culprit, and it is inevitable to avoid recognition. These violations are dreadfully inhumane.

I love my country, but I acknowledge that blame is not warranted, and blame is, in any case, pointless. No one person or group is truly ever deserving of full blame. However, these occurrences happen. We must fully understand the problem before asserting who, in entirety, may be responsible for the occurrence. This promotes the ability to track the root of the issue and to act accordingly. Despite the exploitation of free trade on both sides, businesses are different and relatively new in form. We now have fundamentally different products in this trade discussion. These are lives as opposed to a simple product. Lives that when met with compassion as well as unfettered quality care, are better off when they leave, not worse. These products can cry or give you a hug – something cogs and widgets cannot do.

This is not a reality best approached with disdain or ill will. It is best met with a ‘glass half-full’ attitude. It is best met with the opportunity to, again, see how two countries, great friends since the mid-19th century, can be our best selves: a collaborative solution-oriented partnership. We have done so through thick and thin. Our mutual ability to recognize and confront much larger issues is why Sir Winston Churchill called my country’s friendship with yours a “special relationship.”

Change comes when we put the past in the past and recognize that a swift address of present challenges will forge a path to a better tomorrow. Pain implores research and understanding, the resulting knowledge invokes greater change...and greater change is how we have always seen evolution progress in a beneficial and positive light.

In that positive light, I re-emphasize the support for community-based care, along with extra scrutiny placed on extended stays over 30 days as opposed to 12-weeks. Undoubtedly, I believe the prohibition of further payments to U.S.-based providers for mental health services will serve both nations well. While my recommendations may be painful to comprehend enacting, they are presented and affirmed with gratitude for the opportunity to be of service.

For questions, comments, suggestions, or any other matters in which the author’s attention may be required, contact information is provided below.

More Acadia investigation information, including the original white paper, letters to regulators, SEC filings, copies of pending litigation complaints; may be found by navigating your web browser to bit.ly/AcadiaInvestigation

Further supplementary information is available upon request.

AUTHOR’S CONTACT INFORMATION:

Penn Little

155 N Wacker Drive, Suite 4250 Chicago, Illinois USA 60606 Office: (312) 803-5812 Fax: (312) 837-3700 Email: [email protected] Web: www.barnothin.com Twitter @pennlittle

For more of Penn’s publications on this matter, as well as others, navigate your web browser to: www.pennlittle.com/publications

11 APPENDIX

Exhibit A

Acadia Healthcare Cap Table from Q1 2019. Source: Bloomberg Terminal.

12

Exhibit B

Chart showing Acadia’s Interest-Coverage Ratio Analysis. Source: Simply Wall Street.

13

From the Rt Hon Matt Hancock MP Secretary of State for Health and Social Care

39 Victoria Street London SW1H 0EU

020 7210 4850 Rt. Hon Harriet Harman MP Joint Committee on Human Rights Committee Office House of Commons London SW1A 0AA

4 February 2019

Dear Harriet,

Thank you for your letter dated 9th January regarding the Joint Committee on Human Rights meeting on Assessment and Treatment Units and people with learning disability or autism. You raise a concern about whether different funding sources create barriers to the development of appropriate community based care. I entirely understand this concern, which has existed since the foundation of the NHS. The question is how best to manage the boundary. I can confirm that we have actions underway to mitigate any issues regarding the distinction between NHS and local authority funding. In accordance with the Funding Transfer Agreement process, each Transforming Care Partnership (TCP) should have in place a Risk Share Agreement governing the key funding transfer principles shared and agreed between the local CCGs, local authorities and NHS specialised commissioning function operating in the area. This Agreement should address issues such as how additional care and support costs for individual patients might be met. NHS England supports CCGs, NHS England Specialised Commissioning and local authorities to put in place governance and financial mechanisms to align or pool resources and to manage financial risk. Dowries are also paid by the NHS to local authorities for people leaving hospital after continuous spells in inpatient care of five years or more at the point of discharge. This is of course in addition to the fundamental duty on local authorities under the Care Act 2014 to assess and meet any eligible care needs. Local authorities must work in partnership with eligible individuals to plan their care and support and offer a range of options regarding how their care and support is secured. You also raise a question about whether private providers might have a vested interest in keeping people in hospital. This has been discussed in the media extensively. Clearly, we have to guard against any potential vested interest that acts against patients’ interests.

We have a range of safeguards in place to prevent gaming of the system at the patient’s expense. The key process to determining discharge or treatment plans, are the Care and Treatment Reviews (CTRs) which are undertaken by an independent panel of people, including an expert by experience, a clinical expert and the commissioner who pays for the person’s care. Decisions on continuing hospital treatment are therefore not made in isolation by a resident clinician. Providers are monitored by the Care Quality Commission, and doctors subject to rigorous professional registration. We have asked the CQC to undertake a full thematic review of the use of segregation and seclusion across health and social care and to look at other restrictive interventions in settings specific to learning disability, autism or mental health, including private providers, to ensure that whilst they are inpatients, people are not subject to unnecessary restrictive intervention. There are also statutory provisions to allow people access to advocacy support. The Mental Capacity Act (2005) gives people who have an impairment, injury or disability, who have no one able to support or represent them, and who lack capacity, the right to independent support and representation. Under the Mental Health Act (2007), you have the right to be referred to an independent mental health advocate (IMHA) if you are detained under most sections of the Mental Health Act, whether you are in hospital or on a community treatment order. Staff in the NHS or a local authority, for example, doctors, care managers and social workers, all have a duty to instruct an IMHA where the eligibility criteria are met. I hope this response is helpful. I am very concerned that the support we give for people with learning disabilities and autism must improve. I would be very interested in your views on how best to do that, and would be keen to work with you on this vital agenda.

Yours ever,

MATT HANCOCK Joint Committee on Human Rights

Oral evidence: Conditions in learning disability inpatient units, HC 1811 Wednesday 12 December 2018

Watch the meeting

Members present: Members present: Ms Harriet Harman (Chair); Fiona Bruce; Karen Buck; Jeremy Lefroy; Baroness Hamwee; Baroness Lawrence; Baroness Prosser; Lord Trimble; Lord Woolf.

Questions 1–19

Examination of Witness Witness A, individual with learning disabilities; Witness B, individual with learning disabilities.

Q1 Chair: Thank you very much, […] for coming along and talking to us this afternoon. As I explained to you earlier, I chair this Committee, which is called the Joint Committee on Human Rights. We are half Members of the House of Lords and half Members of the House of Commons—MPs. We are concerned about human rights and the human rights of everybody. We are really grateful to you for coming along and talking about your experience, what you make of it and what you would want us to know about. Of course, you have [name of individual] with you, who is here to help and support you. As I said to you earlier, there are no right or wrong answers. This is definitely not a test or an exam. We are just very grateful that you have come along to talk to us, because at the end of this we are going to write a report with recommendations to Government and to all sorts of other people, and it is important for us to hear from you before we write that report.

Perhaps I can start by asking you to say a tiny bit about yourselves, whether you knew why you were detained and whether you thought it was right.

Witness B: I am 49 years old and I have a learning disability. I work at [name of institution] as a consultant and have been in the role for just

Oral evidence: Conditions in learning disability inpatient units 1 over a year. [The organisation] is a self-advocacy organisation for people with learning disabilities, run by people with learning disabilities. I am an expert by experience. I was in secure hospitals for three years when I was around 19. My experiences there were not good at all. When I was 19, I got into trouble with the police. I did arson when I was younger. I lost my brother when he was 16. I was in a bad place at the time. I ended up going to court. I broke my bail twice. I ended up going back to court and going to [name of prison] for six weeks, which I did not like. I hated the prison and its long wards. Then I ended up going to [name of institution]. I also did not like it because it was a secure unit, but there I had the help and support that I needed to get back with my family, because my family disowned me when I went to prison. [Name of institution] closed and I had to be moved again. I was told I would be put on the open ward and would have all the support I needed when I moved. I ended up back on the secure ward, so I was not happy. Eventually, I built up the confidence to move out of [name of institution] and got my own place, and since then I have been happy. I did not like it before. I came out covered in bruises. I was not happy that I was put in prison in the first place. I should have been in an open ward with support. I came out with all the support I needed. Eventually I got married and now I have been married 20 years. I also have four stepchildren I have brought up, so I am much happier now than I was back then. Witness A I am 31. I now live in supported living, where [name of organisation] provides me with support to live the best life I can, but before that I had experienced some bereavements. When I was [age], my girlfriend committed suicide. She was hanging from a bunkbed, and that was the start of my troubles, really. I started to have behaviour that they said at the time was not right, not normal. I became aggressive and used to kick off—that is the term they used—quite a lot. Before that, I had had a stable upbringing by my mum. There was one time when I went to bed as I do normally, and the police came. Quite a lot of policemen came, and they handcuffed me. I had never been in prison or been handcuffed before, but they handcuffed me and pushed me to the ground because they said I was being violent and I was a danger to myself. With the type of learning disabilities and other disabilities that I had, there are certain trigger points. They pinned me to the ground and took me off. When they charged into my bedroom, my reaction was to fight back and I became violent towards the police officers, but I did not know what was going on. No one told me. No one told me they were coming. No one told me why. I associate being handcuffed with doing something wrong, but I did not think I had done anything wrong. I ended up in what I can only describe as a room with nothing in it. It was a white room with nothing in it, just white, and a little hatch they passed things through. What was strange about it was that I started the evening at home wearing clothes and I

Oral evidence: Oral evidence: Conditions in learning disability inpatient units 2 ended the evening not wearing any clothes, just wearing a white thing. They took my clothes off and took the change I had in my pocket, my watch and everything. I was trying to fight back, fight it, fight these people. I did not know where I was. I later found out that it was an ATU about 30 miles from my home called [name of institution]. I did not know where my mum was. The next thing I knew, they were saying, “You need to take this medication. You need to take it now”. I asked, “How can I take the medication if I still have the handcuffs on?” They took off the handcuffs, they made me take it and I fell asleep. I assume that whatever I had made me drowsy and I fell asleep. Chair: Basically, did the way they came to detain you make you worse? Witness A: Yes. I did not know what was happening. Looking back at it now, it does not feel real. It feels like some sort of nightmare. It was not a safe place. It was not a treatment room. I got no assessment or treatment done. There was no care. I was just put in this room, and I lay there and went to sleep. How can you put drugs in people like that? I do not understand that part of it and I still do not. If I look at the care, support and treatment that I receive now, it is like being in a different world compared to what they did. I do not have any regrets in my life. I try not to, but I have disappointments. One of the disappointments I have, and one of the nightmares I have when I go to sleep at night, is the look on my mum’s face and the scream she let out when these people came in to take her son away. Q2 Baroness Lawrence of Clarendon: How did the staff treat you while you were in detention, and was there anything that upset you about your treatment? Witness B: Yes. They restrained me by using a hand against me. They would hold it and twist it in places it should not go. They threw me into my cells and it hurt. I was not allowed to go to the bathroom when I wanted, so I had to ring a bell to let them know. Sometimes they would answer it but sometimes they did not. This made me feel uncomfortable and upset. I really did not like it. It denied us our basic human needs. Baroness Lawrence of Clarendon: How was it for you? Witness A: It was like a prison. Actually, I went to a prison a while ago as part of a previous job to help support some inmates who were suffering from mental ill health. They had TVs and PlayStations, things that they could do. There was nothing like that where I was. Like Witness B said, you had to ask permission to go to the toilet or go outside. That was the worst thing. I still have trouble now with small spaces. As can happen when someone is in a small space, I started to hear voices and see things that were not real. I do not know whether that was the medication, but I do not think I saw any lights or fresh air in the year I was there; I do not think I went

Oral evidence: Oral evidence: Conditions in learning disability inpatient units 3 outside. I knew the behaviour I was told I was expressing was considered bad. I can now go and get my food whenever I like, because my human rights have been put back in place. Being in that room was like being in a box. When I went in there for the first time, a little bit of me died that day. Baroness Lawrence of Clarendon: Can you say a little about the staff and their treatment of you? Witness A: They all wore the same uniform, white coats. They did not listen to me. They did not look at me. They did not ask whether I was okay. They said, “You are going to take this now”; “You are going to eat this now”; “You are going to drink this now”. When I used to question why, they just said, “Because we are telling you to”. When I used to get aggressive, the same thing happened. They handcuffed me and pushed me down to the floor like I was a criminal. Baroness Lawrence of Clarendon: Witness B, how did the staff treat you? Witness B: It was not very good. I did not like the staff. They were horrible. They left me with bruises on my arms and legs. The attitude towards people with learning disabilities stunk. They just did not want to know. They did not give you a date for when you could be discharged. They did not give you a date for when you could leave or go out to get some fresh air. It was just horrible. It was just uncomfortable. Q3 Fiona Bruce: Good afternoon, again. I am going to ask about your lives now. Witness B, you told us a little already. You told us that you are married and that you have brought up four stepchildren, which is quite an achievement in itself. Witness B: Yes, it is. Fiona Bruce: Can you tell us a bit more about your life now? Witness B: It is a lot better now than it was back then. I do my own things. I can go out on my own. I am independent. I have my own money. I go out and get shopping, cook my own food, take the dog for a walk, that sort of thing. It is really good now. I am really enjoying life. Fiona Bruce: Are you coping well? Witness B: I am coping well. My medication and my mental health are kept well under control by my doctors, so they keep an eye on me. If I am feeling depressed or anything, I will go to the doctors and ask them to change the medication where needed. It is good. Fiona Bruce: It is great to hear. Thank you, that is very helpful. Witness A, you have given us some really great descriptions of the life you had when you were detained. You told us you are now in supported living and you get good care and support. Could you tell us more about your life now and have you cope? Witness A: I feel like I have been given a second chance, really. I have a job. I play football; I love football. Fiona Bruce: What position do you play?

Oral evidence: Oral evidence: Conditions in learning disability inpatient units 4 Witness A: Striker. I do not score many goals at the moment, so I am under pressure. Fiona Bruce: I know the feeling. I have a son like that. Witness A: I live with two housemates. I have a job. Before, I just about existed, but today I can tell you that I now live my life the way I want to, with my support staff who treat me like a human being. That is all I have ever wanted, and that is all people with learning disabilities and/or autism want: to be treated equally, like everyone else. Fiona Bruce: What is your job? Witness A: I work for [name of organisation] […], helping people with learning disabilities and autism […] to live the lives that they want to. Fiona Bruce: That is quite something. Thank you. Q4 Chair: We have heard about the lives you live now and the situation when you were detained. In your opinion—I will start with you, Witness A, and then ask you, Witness B—was there any benefit, any plus side, to you being detained in that way? Are you different now from how you were then, which meant that they needed to detain you, or was it just a very bad episode that you think should never have happened and that caused you to suffer? Do you think there was any justification for it? Do you think they were right at all to detain you? Were they completely wrong, so you were the same as you are, sitting here now; it is just that they were doing the wrong thing to you?

Witness A: No, I should never have been detained, absolutely not. If the steps had been taken that are available now, I would have had the right care, treatment and support. I can only speak for myself, but someone like me should never, ever have gone into a place like that. As I said earlier, I put on my forms that I do not have a criminal record. I have never been in prison, but to me that was my prison. Chair: Witness B, was it necessary for you to be detained? Witness B: I got into trouble. I broke the law, so I should have been in prison or somewhere just to secure me, to get my mental health under control, but the ones I was in I should not have been in. I did not like them. It just did not feel right. I felt I should be with my family, but I was sent away from my family, so I had no family support. I had nobody at the time, so I do not think I should have been in that hospital; I should have been nearer home. Chair: Witness B just mentioned her family. Witness A, you mentioned your mum. When you were detained, how did that work out? You were living with your mum when you were taken off. Witness A: Yes. They burst into my mum’s house at [time] at night and said, “We are taking your son”. Mum was powerless to stop them. She did not know why. She did not understand, I do not think, the brute force of

Oral evidence: Oral evidence: Conditions in learning disability inpatient units 5 it all. I can hear her screaming even now. That stays with you. That triggered off my mental health and my suicide attempts later on in life. I would argue strongly that my need for support now may be partly due to what happened; I do not know. My mum was not even allowed to visit me. Why not? They do not tell you. They strip things away from you and you become less human in places like that. There are pros and cons to any medication. I am on medication now, but at least I understand why I am on medication. At least someone is telling me why certain things are happening in my life. Back then, there was nothing, like I was a criminal, like I had done something wrong. I was locked up. I remember the keys jangling, the turning of the lock and the shutter coming down. Q5 Lord Woolf: I would like you to help us with this, if you can. You have had good times and bad times. The bad times came and were then followed by better times. Do you know of other people who have been treated badly, and can you tell me whether that worried you? Would you like to answer first, Witness A? Witness A: I have friends who have been sectioned and, like Witness B, are now married, have children and have wonderful lives. I have friends who are still in units and should not be. You will hear later on stories of other people who should not be in ATUs or secure units, in my opinion. If you can give the right support, it is usually just enough. Lord Woolf: Witness B, could you help me on the same thing? Do you get upset? Witness B: It makes me angry and upset. I want to get them out. It is not fair seeing them stuck in hospital for years and years and not being able to get out. They should be out, enjoying life, getting married and having a great life. It was not easy for me to be in a hospital for three years, so I do not think it is great for people to be in hospital for years and years and years. Lord Woolf: Can you tell me also, Witness B, whether there are things you believe could be done to stop these wrong events happening? Witness B: Inspections are really important. They get them out into the community and get them the right support that they need. Train the staff so they can better communicate and deal with people in these hospitals. It was not easy to come out of hospital for me. Having suitable housing and beds so they have somewhere safe to stay is important. More support in the community is important, too. Lord Woolf: What about you, Witness A? What do you think should be done to ensure that people are all dealt with properly? One of you mentioned inspectors, did you? Witness A: Yes. Care and treatment reviews take place in ATUs and similar settings now. They are usually done by people with lived experience of those situations. For me, it comes down to training of staff, the right funding, really implementing the Care Act and really making

Oral evidence: Oral evidence: Conditions in learning disability inpatient units 6 sure these horror situations do not happen to people, and they do not spend all their lives in what I call prisons. You only have to look at the success stories for me and Witness B, and what we can achieve when you promote our human rights and give us a chance. Lord Woolf: Thank you very much. Those are the questions I wanted to ask. Chair: Thank you very much indeed. I hope you feel that, after what you wrongly suffered, you are at least helping us make the right recommendations and understand what it is like to be in a situation where you have fewer rights than if you had committed a criminal offence. You have done a very good and helpful public service by coming along and speaking to us. We will think very, very carefully about what you have said and include it in our report. Thank you very much indeed.

Examination of Witness

Paul Scarrott, My Life, My Choice Q6 Chair: Hello, Paul. Welcome. Thank you to Andy for coming along to support Paul. As I said when we met earlier, we are really grateful to you for coming along and talking about your experience to us, because we are the Joint Committee on Human Rights, which means we are concerned about everybody’s human rights. That is the approach that we take. Half of us are Members of the House of Lords and half of us are Members of the House of Commons. Really, we just want to hear about your experience. There are no right or wrong answers on this; we just want to hear your experience, because we are going to write a report at the end of our inquiry, and it is very important that we hear from you about your experience.

I will ask the first question and then a number of other questions will be asked. My first question is to help us understand the situation. How did you come to be detained? Did you know why you were detained? Did you think it was right thing to happen to you, that you should be detained in that situation?

Paul Scarrott: It was something that happened in my past. It was something I did. It gave me flashbacks, what happened in my past. For the safety of me, my girlfriend at the time and the public, I went to try to get some help. I took tablets. The only problem was that I thought no one was listening to me because I had flashbacks to what happened in my past. After that, I ended up in hospital, and there the mental health team came and spoke to me. The psychiatrist introduced himself and explained to me: “We cannot get you into a unit at the moment”. He said, “We will not

Oral evidence: Oral evidence: Conditions in learning disability inpatient units 7 section you. We will keep an eye on you. Could you please stay safe with our support?” I said yes and stayed safe. “When we find a bed, we will get you into a unit. If you carry on with what you are doing, you will be sent to Dundee. You will be sectioned and you will have nothing”. I said, “Okay”. The people around me supported me all the time until I went in voluntarily. I did not go under mental health. I volunteered and went to the unit in Oxford. That is where I went for treatment. Chair: Doreen is going to ask you about what happened when you were in there. Q7 Baroness Lawrence of Clarendon: How did the staff treat you while you were in detention? Did anything upset you about the treatment you received? Paul Scarrott: The staff treated me okay. They were really supportive. When I went in voluntarily, they shut the door behind me and I knew it was locked. I knew I was safe, because the window was open. The staff were very good. The only place was the room and the area was dull. It was old fashioned, dark and everything. They treated me okay, but I do not think they treated some of the patients very well. I had a nurse who assisted, a person called Chris Jones and Dr Dermott, who was my psychiatrist. They really helped me very well. Sadly, neither Chris nor Dermott are around any more. They really supported me very well. I had to go one to one with a nurse to the place to have therapy treatment, come back and that kind of stuff. A couple of the staff really were good. I could not sleep at night because of all the flashbacks I was having, so they said, “Okay, Paul, we have set a little computer up”, a laptop or something. “You can go on the laptop and play games. When you are ready, you can go to bed”, and that was it. Baroness Lawrence of Clarendon: That is good. You had really good treatment and a good experience from the staff when you were in for treatment. Paul Scarrott: Yes. Baroness Lawrence of Clarendon: That is very positive. Chair: I am going to ask Fiona to ask a question, but I have to warn you that the bells will be ringing soon and it is not a fire alarm. It is just that we have to vote, so those of us who are MPs from the House of Commons will, I am afraid, have to break the evidence. We will go down and vote, and then come back and carry on asking you questions. Paul Scarrott: That is fair enough. Q8 Fiona Bruce: Good afternoon, Paul. Thank you for coming to talk to us. I would like to ask you about your life now. You are not in detention now; you live an independent life. Could you describe it to us? Paul Scarrott: Not being big headed, I am really well and really good, because I belong to a charity and I am doing a lot of stuff for the charity. Let me get my bit of paperwork out. I am on the Oxfordshire transforming

Oral evidence: Oral evidence: Conditions in learning disability inpatient units 8 care board. My colleague behind, who you spoke to earlier, and I do CTRs, care and treatment reviews, going out to different places and finding experience, and CQC work. We run a nightclub for our disability group. I am part of the Thames Valley Police board meeting. I am out there doing a lot of stuff. Fiona Bruce: Absolutely. Paul Scarrott: I am married. My wife and I are married, living in our own flat and everything. I found this charity, My Life My Choice. I could not go back to a full-time job after I came out of treatment, because if I went back to full-time work, since I get benefits, it might make me relapse again. I found the charity My Life My Choice through an organisation helping me to find it. Not being funny, but now I will not turn back time. I am going forward. I like charity working and helping other people in the community. Fiona Bruce: You are making a real different to a lot of other people’s lives. Paul Scarrott: Yes. Chair: Do I take that to mean, Paul, that you are saying that, with the right support, the right accommodation, and the right ability to work but not too much, you can lead a good life but all that is critical to you leading that life? Paul Scarrott: Yes. Q9 Chair: Do you think there are other people in detention who could be leading that sort of life if they had good support? Is the key thing support outside? Paul Scarrott: Yes. I have been to a lot of places for care and treatment reviews. I have spoken to people, and a lot of them talk about red tape and Section 64, or something, under criminal justice laws. I spoke to a guy in one unit somewhere a long time ago, and he was there when he was 18 and now he is nearly 40 or 50, but he is still under criminal justice. They said they could not get him out or anything, because they have no support and criminal justice is causing the problem. I have seen people in units for a long, long time. When the evidence is put in front of us, we see how many times they have been moved around. There is not enough support from the Government or the council, all that lot, to get them out of the unit. With the Winterbourne View scandal and what went on, when we first found out we tried hard to get the law and everything changed. We hear it all the time. Sometimes I go in there and come out upset, because people have been in there for a long time. Luckily, staff where I work support us and they are trying to get things done. There are too many people in units away from their family. Another time that I went to a unit, there was a guy living in Southampton and his mum lived on the Isle of Wight, and was travelling to see him. They would not pay her travel expenses. She was in her 80s or 90s, and

Oral evidence: Oral evidence: Conditions in learning disability inpatient units 9 travelling from the Isle of Wight is quite difficult. A lot of places are too far away. I would like to get people back, if they are under criminal justice, not too close to where they live, but somewhere close to their family if their family is still supporting them. Chair: Paul, it is going to take us about half an hour now to vote. You have given such a good description of the right support, as an alternative to the difficulties of detention and what have you described as wasted lives, that you have probably helped our Committee enough with your evidence for us to say that you can sit back now and listen to the next witnesses when we come back. Is there something that you want to say that you have not had time to say to us? Paul Scarrott: If I think of anything, I will decide when you come back. Chair: Okay, while we are voting, you can decide whether there is anything in particular that you wanted to say that we have not asked you about. Otherwise, we will go on to the next people, but you will be here anyway. We are going to vote. We are going to run, otherwise we are going to miss it. Thank you. The Committee suspended for a Division in the Commons. Q10 Chair: Paul, thank you very much for your patience and for bearing with us while we were voting. Fortunately, we do not have any more votes, but thanks for waiting. I would like to ask you to conclude the information you are giving to us with any other points that you think will help us with our inquiry about detention, how people are detained, how they are treated when they are in detention and whether it is necessary. Paul Scarrott: There were two items I missed out. When I was in the unit, I would ask for female nurses to look after me, because I was not comfortable with male company, blokes’ company, because of what happened in the past. I told them I wanted female nurses. They said, “Fair enough”, and that was good support that I had. Some people who go into units do not get to choose what staff they want. They do not get the right choice of staff. One person I went to see a long time ago said, “I just do not want to hang around with female nurses”, but they would not listen to him at all. There was another point. I could go out with a member of staff if I wanted to. Sometimes, when I was in a unit, I did not have privacy. I could not have privacy in some places. They would come in and say, “Do this, do that”. If I wanted to do something in private, they would not let me. They would watch me. Although I went in voluntarily, they did not tell me, “You can leave any time”. They said, “You are in here until you have finished treatment”. They did not say, “You have the right to go out. If you want to finish this, you can go”. They did not say that. When I went in, I thought I would be in there for a long time until they told me I was leaving. I find a lot of people saying that. That is my evidence to you guys.

Oral evidence: Oral evidence: Conditions in learning disability inpatient units 10 Chair: Basically a lot of people do not know how long they are going to be in there and how they will get out. Paul Scarrott: If you go in voluntarily, that is fair enough. If you go in under the Mental Health Act, people will not know how long your treatment is going to be. One guy said it was like prison life; you are sent to prison. That is what some people think. Some people say that you go in and come out. That is fair enough; you get six or seven months’ treatment. Some people I have witnessed have been in there longer and they said, “It was like a prison sentence to me”. They did not go in due to mental health issues, although some others did. That is why I fear that some people are in there longer than they should be. Chair: Thanks very much for your help with our inquiry, Paul. You are welcome to sit in the public part while we hear from our next witnesses.

Examination of Witnesses Julie Newcombe and Jeremy.

Q11 Chair: Thank you very much indeed, Julie and Jeremy, for coming to help us with this inquiry. As I explained earlier, we are the Joint Committee on Human Rights, so our perspective is the human rights of every individual and, in particular, the issue of those who are detained and whether their human rights are respected in detention. Half of us are Members of the House of Commons and half of us are Members of the House of Lords. At the end of hearing from a number of witnesses, we will write a report with recommendations in it and send you a copy of the report, so that you will know what we have taken from your evidence and how it has fed into our recommendations. I will just ask you to explain to us your involvement in this situation. You are both parents, so what are the circumstances that you have come to talk to us about?

Jeremy: My daughter is in St Andrew’s Hospital in Northampton. She will have been there for two years next Thursday, and the majority of that time has been spent secluded, locked in a cell, with no treatment and no therapy. Chair: How did she come to be in that situation, and do you think it is the right decision for her? What say has she had in it, and what say have you had in it? Is this a good thing that you are explaining, or is it bad, and if so, why? Jeremy: Bethany is autistic. Her part of the spectrum means that she cannot cope with situations that cause her anxiety. When she becomes anxious, her natural response, in the way her brain has formed, is either

Oral evidence: Oral evidence: Conditions in learning disability inpatient units 11 to try to escape that situation—flight—or, denied that, to attempt to fight. It is the fight-or-flight response. Bethany has been through 17 failed placements, which did not understand that part of Beth’s condition. That ended with Beth becoming criminalised, as these organisations failed to cope with her challenging behaviour. We were told that, to protect Beth and to protect other people, Beth needed to enter an ATU for assessment and treatment. ATUs are full of very distressed people, so Beth witnessed self-harm, she heard screaming, she heard people distressed and shouting. With Bethany’s condition, she has massive sensory issues. She cannot cope with that environment. I am neurotypical and I could not cope with that situation, so Beth was unable to survive in that environment without resorting to fight or flight. Their answer to that was to lock Bethany away. When I visited Beth I knelt down at a hatch in the door six inches square and talked to my daughter through that hatch, the hatch they feed her through. That is the hardest thing I have ever had to do and there is no need for it. If the right people are doing the right things around Bethany, you would not know that Bethany has autism. She is the most wonderful, engaging, funny child you would meet. Bethany had an assessment this week from a potential provider. That provider took Bethany to a farm where she mucked out horses and played with hamsters. When Bethany was returned to the unit, they did not have sufficient trained staff available to enable her to stay out of being secluded, so they put her back in a room and they locked the door. In that room Beth has no privacy. They watch Bethany showering and going to the toilet. I cannot imagine how my daughter copes with that situation. I am six foot four, built like a brick wall and strong, but I am not as strong as Bethany and never will be. It is cruel. I have reports that state that her treatment is inhuman. I will share those reports with you. Chair: Thank you very much. Julie Newcombe: I am recovering from that. My son has been out of hospital now for three years. When he was detained under the Mental Health Act, he spent 19 months in five different in-patient settings, one after the other. He kept being rocked on to the next one, because they did not know what to do to help him. Since he has been out, I have been supporting other families a lot and hope to bring their perspective to you today as well. I have campaigned and been part of the Rightful Lives online exhibition, which explores the human rights of people with learning disabilities and autism. Basically, because I am so horrified by what has happened to us and is still happening to so many other families, I felt the need to carry on doing something about it. My son is called Jamie. He was originally detained under the Mental Health Act as a result of some medication changes and some inappropriate behaviour management, which was essentially punitive. If he had a bad day and did something inappropriate, he was told he could not go out. If you know Jamie, a day inside is a failed, lost and wasted

Oral evidence: Oral evidence: Conditions in learning disability inpatient units 12 day for him. He needs to be out and about, doing things. To say to him, “You cannot go out”, is the ultimate punishment, and of course it resulted in him panicking and fighting, because he was just in meltdown. Once he was detained, our local authority gave notice to his provider, which effectively rendered him homeless. He was detained under the Mental Health Act, and even if a tribunal had wanted to discharge him it would not have been able to because there was nowhere for him to go. We see that so often. The power of tribunals is diminished because there is nowhere for the person to be discharged to. In addition, we agreed to him going into hospital, partly because we did not have much of a clue what it was all about, but also because we were promised it was only going to be for a few weeks. They would sort out his medication, he would have some care and treatment, then he would be able to come out again and be all sorted out. Of course, a few weeks turned into 19 horrific months. Chair: Are you saying, Jeremy, that it starts off with Bethany failing to get the support she needs and then her being in a place that is inappropriate, which makes her suffer and then makes her worse? Jeremy: Absolutely. A child with my daughter’s sensory issues is placed in a seclusion cell, which is a horrific environment anyway. She then witnesses another person in distress carried past her by a group of staff, with that person kicking, screaming, shouting and crying. The sensory overload that that creates is torture for my daughter. It is absolute, utter torture. When Beth witnesses and experiences that, her anxieties trigger and she becomes upset. She wants to fly or fight but cannot. That leads to more and more restrictive environments, so they remove anything for Bethany to do from the room. Not only is she shut in an unsuitable environment, but her activities are restricted. What can you do with a child through a little square hole in the door? Chair: Julie, was it the same for Jamie, in your view? Did the failure to give him the right support and treatment at the outset lead to him being in the wrong place, where he suffered, which made him worse? Julie Newcombe: Yes, it definitely did. The example I can give you is that, while he was in all these hospitals struggling to cope with the environment and the distress of other parents, I was able to visit and take him out under Section 17 leave. In the morning in the hospital, he would be restrained or in seclusion. In the afternoon, I would take him out into the community by myself. We would go to Costa, to a farm, on a train ride, doing all the things he loved, and we never had a single problem in all that time, because he was doing things that interested him and kept him fulfilled. He would go back to the hospital and the problems would start again. Q12 Baroness Hamwee: I am struck by one thing that both of you have said. Jeremy, you said that there had been 17 failed placements, and I think you, Julie, said there had been five

Oral evidence: Oral evidence: Conditions in learning disability inpatient units 13 different settings. Was there the same problem with each of them successively? In Beth’s case, was it the sensory overload? I am searching for the right word, but if I use the word “facility”, do not assume any judgment as to whether it was a good or bad facility. Was the difficulty the same in each of them before they gave up on her? Jeremy: First, we struggled to get the correct diagnosis for Beth. We achieved a diagnosis at one point that was then not recognised by social services. That led to them, instead of placing her in units that were particular to her part of the spectrum, placing her in units that dealt with general autism, which is about putting boundaries and constraints in place. That is the exact opposite of what you do to a child with my daughter’s condition, which is pathological demand avoidance. She is hardwired to avoid people making demands of her. She does not understand why I, as a father, could say, “Beth, have a shower”. Where do I get that power from? She does not understand that. That causes anxiety, which leads to meltdowns. Without staff who understand that and who are trained, none of these placements was ever going to fill Bethany’s needs. She would become frustrated. She could not communicate at the level she needed to. Anxiety leads to challenging behaviour, and she very quickly learned that, if you escalate challenging behaviour, often police officers are called. The police officers sit on you. She likes that as an autistic child, because it is deep pressure. In the same way we love a hug, that fulfilled one of Beth’s needs. They would then put her in a police car and take her away from the situation. That is what Beth wants. If you are put in a police cell, you are safe. Your parents come and that is a bonus. You are fed, given hot chocolate and looked after. We teach Beth and people like Beth that that is a way of avoiding anxieties, and they become criminalised because of that. If you have the right people doing the right thing—distracting, diverting, offering choices instead of placing demands—this will be negated. The potential placement does not have a seclusion room. It does not need one, because there are properly trained staff. In 25 years, they have never called the police, never. Baroness Hamwee: Did a similar failure of diagnosis keep Jamie moving? Julie Newcombe: No, his diagnosis is known. When he was first detained, he was sent to a psychiatric intensive care unit, which is possibly the worst kind of environment for someone with autism to be in, because it is for very unwell people. You have to remember that Jamie functions emotionally as a four year-old, possibly. You have just locked up a child, effectively, even though he is in a man’s body. You have locked

Oral evidence: Oral evidence: Conditions in learning disability inpatient units 14 him up in an environment with a lot of distressed people and, sadly, with staff who do not really understand how to care for him. In fact, I would go as far as to say that some of the other patients looked after my son better than some of the staff did. He was in two PICUs altogether, one ATU and two locked rehab units. He was shipped from one to the other because they did not know what to do with him, so they passed him on to somebody else. I would like to offer to the Committee the Mental Health Act code of practice chapter 20, which I think will support both Jeremy’s and my evidence. Paragraph 20 says, “Compulsory treatment in a hospital setting is rarely likely to be helpful for a person with autism”. That is statutory guidance. It also says, “If people with autism do need to be detained … it is important that they are treated in a setting appropriate to their social and communication needs”, and, “Practitioners working with or detaining people with autism should have relevant specialist training and experience”. It says, “People with autism should be detained for as short a period as possible”. As I said, that is statutory guidance and it is routinely ignored. Q13 Jeremy Lefroy: Thank you for sharing this. We really appreciate it. Could I follow up on what Julie was saying? Why do you think it is routinely ignored? Julie Newcombe: It is because they can get away with ignoring it. There is no accountability in the system whatsoever. At one of the PICUs, I asked the manager if she would make reasonable adjustments for Jamie because he has autism, and she said, “I am not going to”. I said, “It is a legal requirement”, and she said, “I can’t. I am not going to”. How do you hold people accountable for that? There is nowhere for you to go and get help from. There is no support. You are there with your child and you have to put up with decisions like that. Jeremy Lefroy: When she said, “I can’t”, why was that? Julie Newcombe: She did not offer an explanation. I expect it was because it is very difficult to accommodate a person with autism in a PICU. It was the wrong place for him in the first place, but that is where he was put. Jeremy Lefroy: For both of you, in any of the circumstances in which your children were restrained or isolated, even for a short time, would you have said it was ever necessary? Was it always unnecessary, but just easier to do it? Julie Newcombe: I would say it is easier. It is easier to restrain. It is easier to seclude. It is easier to medicate. We also need to remember that one of the big solutions in these places is to pump people full of drugs so that they are completely sedated and will not be a problem to the staff. It is service driven, not person driven. Chair: Do you think the guidance that you have read out bears no relation to your experience?

Oral evidence: Oral evidence: Conditions in learning disability inpatient units 15 Julie Newcombe: No, none whatsoever. Chair: Is that the same for you, Jeremy? Jeremy: Yes, absolutely. There is no alternative environment in the hospital for Beth. She is identified as not being able to cope on the ward. The only other place they have is seclusion. St Andrew’s stated 18 months ago that it had completed its assessments and that Bethany did not need in-patient care, but nothing has changed. They wrote a document that explained exactly what Bethany needs. It is brilliant; it nails exactly what she needs. Jeremy Lefroy: What does it say she needs? Jeremy: She needs a therapeutic environment that is based in the community, surrounded by people who understand her needs and who can meet those needs, where she has access to things such as animals. They provide such a benefit to her. Stroking pets is a calming mechanism. Chair: Somewhere, the system gets this and clocks it, but the reality is just a cruel parody and completely different. Jeremy: Yes, absolutely. We know what she needs, but she cannot have it, because under the Mental Health Act we put risk assessments in place that prevent her from accessing what she needs. We cannot bring animals into the seclusion cell, because that is not what we do under the Mental Health Act. Beth needs to be somewhere safe where she does not have access to things, even though they are therapeutic things. Q14 Fiona Bruce: My questions are for Julie and they are both about the present day. The Committee is seeking to understand what your son’s life is like nowadays, and what your life is like now. Julie Newcombe: What is his life like now? We are still undoing the damage. As I said, he has been out for three years. He put on a whole lot of weight in there, several stone. He has not been diagnosed, but he probably has some kind of post-traumatic stress disorder. His behaviour has become incredibly obsessive. He cannot make decisions. He will even hold out two sweets and ask me, “Which one shall I eat?” He has been completely damaged by his experience. You have to remember, if I may backtrack a bit, that while he was in hospital he had no help with his personal care. His clothing went missing. His possessions went missing. Even some money went missing. I gave him some money so he could phone me, but it went missing. He was forced to wear other people’s clothes, including their underwear. When he was transferred from one setting to another, he was locked in a cage in the back of a van. When we got to our destination, because I was following in my car, the driver and escort did not know exactly where he was going, so they wandered off to find the exact ward that Jamie needed to be admitted to. I was left with my son distressed, in a cage in the back of a van, and I fed him sweets through the bars of the cage to try to calm him down.

Oral evidence: Oral evidence: Conditions in learning disability inpatient units 16 His belongings went into hospital in a nice suitcase. Some of them emerged in black bin bags. There were other people’s clothes in those black bin bags. I found his toothbrush in a trainer. Some really personal notes from another patient had somehow found their way into Jamie’s black bin bag. Hospitals are so quick to tell you about confidentiality and patient privacy, but they put somebody else’s personal notes in with Jamie’s possessions. At one point he had no access to hot water for three weeks. He was given nuts, even though he has a nut allergy, and then he had his EpiPen administered unnecessarily. Considering he has had heart surgery, that was a pretty dangerous thing to do. He was left alone for long periods when he was supposed to be on one-to-one, sometimes two-to-one, observations. He was subjected to a police interview, although he clearly lacked capacity even to understand the reading of his rights, and we had to fight to get the police to come to the hospital to interview him rather than him being dragged off to the police station. He had his arm broken in a restraint, the right humerus bone. His arm was wrenched up behind his back until the bone snapped. He was then not taken to accident and emergency for 24 hours, even though his arm was completely swollen. I have a picture of the X-ray if you want to see it. That is the X-ray of the bone and that is Jamie in a sling, because the hospital broke his arm. We think his life was put at risk by medication changes that were really dangerous. I went to visit him one day and he could hardly stand up. He was so overmedicated it took him 40 minutes to tell me what he had had for lunch. As a reaction to that, he was taken off the maximum dose of a highly addictive benzodiazepine over three days, which is dangerous. We were told by the responsible clinician that it was safe. When Jamie started having minor fits as a result of the withdrawal, I took a video of it and gave it to the responsible clinician, who told me it was nothing to worry about. Think about somebody going through all those things—violence, abuse, other things that happened to him in these places—for 19 months. When he comes out, he is not just going to carry on as normal. Forget that. He was damaged. He still is damaged and it is three years later. Fiona Bruce: How is he living today? Julie Newcombe: He is living. He has a flat that is in a residential home. It is a registered home split into flats for people who need that bit of extra space. He is lucky; he has the top floor. We call it the penthouse suite, so he is on the top floor there. He has a core staff team who are brilliant. The manager of the home is brilliant. They really get him and know what he needs to do. They know he needs to be out and about, so he gets to go out. He has completed a course in a special needs college. That is him celebrating his graduation. He now does voluntary work on allotments and on a community farm, so he is making a contribution.

Oral evidence: Oral evidence: Conditions in learning disability inpatient units 17 The key is the right environment, the right staff, as Jeremy says, and the right activities so that somebody can live a really meaningful life. It is not difficult and it is probably cheaper. Fiona Bruce: That is really good to hear. What issues are you still facing in terms of the need for support? Julie Newcombe: The issue we are still facing is that, although he is out of hospital, he is still not home. He still lives some distance from us, and if the traffic is bad it takes me about an hour and a half to get there to visit him. Typically it is an hour. He is still not home. He is still not living in his home community, close to his family and the place he grew up, with people he knows. We still have to complete the job. It is only half done. We are lucky; he has a very good community mental health team. We are working with them to undo the damage. The organisation that cares for him has some good in-house behaviour analysts, who are also helping with that. We have a long way to go. We have to get him home and we have to get him better, but the way we are doing it is to try to make as many good memories as we can and blot out the bad ones. Q15 Lord Trimble: You gave us a very interesting description of what your children have gone through, but what has it been like for you as parents? Jeremy: It has been horrific: the inability to hug your child, because she is locked away from you; seeing your child on antipsychotic medication, even though she has no diagnosis of psychosis. You hear that Bethany has been assaulted by staff. She put her hand through the hatch and fiddled with the door handle, and because the handover to an agency member of staff was not sufficient they did not know that and they repeatedly struck her. There have been sleepless nights and worry as a parent, a feeling of utter failure as a parent. Like I said, she is stronger than me. It has destroyed the family. Beth has lost two close members of the family, who have not seen her for two years. I cannot imagine a worse situation to be in as a parent, and there is no need for it. Chair: Did you feel that the system was drawing on your experience and understanding of her situation and engaging with you? Jeremy: Where has my parent voice been? I am the expert on my daughter. Two months ago, I had to fight to be included in what they called a professionals’ meeting. I am the professional about my daughter. Bethany has no voice. That is clearly identified, but as a parent I know the things that are left out of reports. I know the positives; I know the wonderful things that my daughter can do. They are not in the reports. The people who read those reports see a condition and not a person. They do not see a child. They see legislation that they have to meet. They lost the person a long time ago. They lost my daughter.

Oral evidence: Oral evidence: Conditions in learning disability inpatient units 18 Julie Newcombe: I agree. “Horrific” is a very good word. You are scared. Nobody has a GCSE in the Mental Health Act. You suddenly have to do a whole load of learning and you are excluded at every opportunity. I can remember going to one meeting when 20 professionals had had their professionals’ pre-meeting, like they do, and made all the decisions without me even being there. I was allowed to go in afterwards, sit and listen to their decision, which was actually to recommend a move to St Andrew’s. I spoke through clenched teeth with tears pouring down my face: “He’s not going to St Andrew’s. People die there”, so we managed to avoid it, luckily, and he was shipped off somewhere else, where they just broke his arm. It is so scary. You are constantly fighting and it takes over your lives. I would spend the morning researching, doing emails or whatever, and the afternoon visiting Jamie. In the evening I would do his personal care, because the staff would not do it, and I would read him his bedtime story. I am one of the lucky ones, because I could do that. We found his new home ourselves, and then had a bit of a fight to get him discharged to it, but it was our efforts that found the place where he is living now. The hospitals like to punish parents if they speak out, and they have a clever way of doing that. They will take away Section 17 leave and restrict your visits, so do not speak out, because that is what will happen to you, as it did to us. At one point, we were threatened with transfer to a secure hospital a long way away, because we were causing trouble. We were denigrated to other professionals orally and in writing, and we were repeatedly accused of lying. Nobody should have to go through that, especially when it is their child. Chair: If you feel okay about it, where there is anything in the papers you have that reflects the attitude to you as parents and that you want to share with us to help us understand, we would be grateful to see it. Julie Newcombe: We will send that to you. Chair: The bottom line is to ensure that you as parents do not have to see your children suffering, but also that the system benefits from your knowledge, expertise, love and care, which are great resources. We would be very interested to see how the system relates to you as parents, as David’s question suggested. Q16 Baroness Lawrence of Clarendon: My question is to you, Jeremy. I think you answered most of it already when talking about your daughter and what it has been like for you. In your view, why is your daughter still in detention? Jeremy: There is a lack of community placements and a failure of transforming care. In a meeting on Monday, a telephone conference with Children’s Commissioner Anne Longfield, questions were asked to identify potential placements for Beth to move to, and commissioners were talking of options next summer and the end of next summer, because there is no

Oral evidence: Oral evidence: Conditions in learning disability inpatient units 19 availability. There must be provision for our children. Local authorities have no option, they say, but to place our children in these units. They also love the fact that, when they place our children in these units, they are no longer paying the bill. My daughter’s care in St Andrew’s is approaching £15,000 a week. That is an awful lot of money, the best part of £800,000 a year or £1.6 million so far. A cash-strapped local authority does not want that bill. Actually, it would not cost them that much. There could be a massive saving. It has cost £1.6 million; it is a 100-bed unit. That is £80 million a year for one venue alone. What would services such as CAMHS—child and adolescent mental health services—GPs and social services be able to do with that amount of money in the way of training and preventing our children going into these units in the first place? The money is going into the wrong part of the system. It is not going into prevention; it is going into the very top, when the failures have happened, and there is nothing else to do with our children but lock them away. That must be reversed. It must. Baroness Lawrence of Clarendon: It sounds as if it is more beneficial for St Andrew’s to keep your daughter there. Jeremy: They are putting a horrific amount of money into their back pocket to provide seclusion, no therapies, no treatment and no exit strategy. Where is their incentive? Baroness Lawrence of Clarendon: How long has Beth been in the assessment unit now? Jeremy: It will be two years next Thursday, and 18 months since they admitted that they had completed their assessment. Baroness Lawrence of Clarendon: How far away from your home is that? Jeremy: It is just short of 70 miles. I am lucky that I drive. It can take me an hour and three quarters. Mum, however, does not drive, and to get there by public transport, have contact and return home takes a day. Baroness Lawrence of Clarendon: How far away is mum? Jeremy: She is a little further than I am. We have been far farther away in the past. Beth has been in in-patient units in Cardiff and Preston. You arrive, and because they do not have the staff to treat her she is in meltdown and they go, “I am sorry, you cannot come in”. You have to turn round and go home, knowing that your child is waiting for you. Baroness Lawrence of Clarendon: One of the things I read is that, when you see Beth, you have to be down on your knees to look through and talk to her. What is she like when she sees you and you can see each other face to face? Jeremy: It is brilliant. It has been hard in a way, because to visit your child in that situation and tell her your good news is like rubbing her nose in it: “Look at what I’ve been doing”. You say to Beth, “What have you done today?”, but that is the wrong question to ask. Because of the media campaign I have been involved in, people have sent greeting cards and gifts to her, and she really looks forward to that. But for a child in a unit

Oral evidence: Oral evidence: Conditions in learning disability inpatient units 20 there are no experiences to talk about. There is nothing good in Beth’s world, shut in seclusion. Put yourself in her position. Baroness Lawrence of Clarendon: One of the things was about when she was taken out and she went to a farm. Was that the only time that happened or has it happened again since? Jeremy: That only happened on Tuesday of this week. Baroness Lawrence of Clarendon: That is the first time it has happened in the past two years. Jeremy: There is nothing in the care plans to repeat that at the moment. It was only because there was a properly equipped and staffed provider who could facilitate that. Q17 Chair: The Government have given repeated assurances that they want to reduce the number of young people and children who are detained in this way. Is it your view that Jamie and Bethany continue to be detained because of a more generalised problem and that this is why the numbers are not coming down? Do you feel that what happened to Bethany was a one-off terrible abuse of her human rights or a generic problem that is in the system? Jeremy: It is a generic problem. I have been in communication with people since the media and Twitter campaign that I have taken part in. I was horrified to find out the numbers. There are hundreds of young people in these units, and so many of those parents have been gagged by courts to stop them talking. Walsall local authority attempted to place a reporting restriction on me, because it saw what I was doing as infringing Beth’s rights to privacy. This related to a Radio 4 documentary that I was involved in talking about Beth. I asked why they did not bring Radio 4 into that court. It was just me as the parent. I believe the answer was that they did not have a case they thought their lawyers could take on, against the might of the BBC’s lawyers. I am aware of so many other parents who have been gagged, who cannot speak out. I am aware of so many other people who do not have parents. They have no voice. Chair: Do you think the scale is not clear and properly acknowledged? Jeremy: Absolutely. Q18 Ms Karen Buck: I have been struck, listening to your evidence, by how lonely the experience you have both gone through sounds. Jeremy, you just started to answer one of the questions I was going to ask you. What has been your experience of having representation or advocacy through this, or legal challenge at any stage, or using an official complaints procedure at any stage? Has that happened? Obviously if it was a legal challenge you would have been legally represented, but have you had advocacy and representation on behalf of your children through these processes?

Oral evidence: Oral evidence: Conditions in learning disability inpatient units 21 Jeremy: I have never been offered advocacy for myself. We had to fight tooth and nail to get an advocate in place for Bethany. She struggled to engage with ones the local authority offered, because either there were communication issues or Beth just did not engage with the personality. We identified a particular advocate who Bethany had had contact with, through support mum had found, and we very much wanted that advocate for Beth. They had spoken on Skype and they were getting on so well. It was added to part of Beth’s care order that, should Walsall fail to engage an advocate for Bethany, the advocate we named would be engaged. Walsall objected to that on the grounds that, because the advocate had worked with mum, she could not then advocate for Beth, because there was no independence. Actually, that is a judgment for an advocate to make and not a local authority, and that decision was being made by an independent reviewing officer who just happened to be the ex-team leader of the social services children’s department. Who was he to talk about independence? We had to fight. It has only been since early this year that we have had an advocate from the Children’s Society, who has worked with Beth. Ms Karen Buck: Have both young people had legal representation on their own behalf? Julie Newcombe: It fluctuated depending on which hospital Jamie was in. In one hospital, he had a fairly decent solicitor. In another hospital, he had a fairly decent advocate, but it was pretty random as to whether they were available or effective. I was never offered an advocate or any kind of support, and my local authority did not give me much either. Ms Karen Buck: Did either of you use the official complaints procedures, at any stage? Julie Newcombe: You do not have time. Well, I did not. You do not have time to do that. You are just trying to keep your head above water. We wrote a letter of complaint to the first PICU, where they lost all his stuff, and they gave us a few quid as compensation. As I said, you are just keeping your head above water and trying to keep things right for your child. You do not have time to go through official complaints procedures and do that sort of thing. It is impossible. Jeremy: You are not offered any guidance on your rights to complain or the avenue to complain through. I complained numerous times to Walsall children’s services reviewing officer, in her role as corporate parent. She would copy me into emails and letters written to St Andrew’s on our behalf and on their behalf. Walsall was not happy with what has happened to Beth. They got absolutely nowhere. I utilised the services of my own MP but, again, got nowhere. You are banging your head against the brick wall that is the Mental Health Act. Chair: Was there any internal investigation into the breaking of his arm, besides you complaining? What happened after that? Was anybody disciplined? Was there any rewriting of the rules? Was there an apology? It is quite a serious thing to have an arm broken.

Oral evidence: Oral evidence: Conditions in learning disability inpatient units 22 Julie Newcombe: The person who did it was suspended immediately and later dismissed from his job. I do not recall ever getting an apology. Safeguarding was carried out by the local authority where the hospital is, and it concluded that breaking that bone was an unfortunate accident. We have since complained about the ineffectiveness of the safeguarding, because that was no accident. We received some reassurances that they were changing the way they were doing things, that they were more effective now, that the person who did the safeguarding does not work for them any more, and that sort of thing, but it always feels like it is you against them, everywhere. It is you against the hospital, you against the local authority, you against the commissioners. It is just you, the parent, trying to fight for your child. Baroness Lawrence of Clarendon: That bit I understand. This situation is quite lonely, because you have to be the voice for your child and speak up, since they do not have a voice. You are put in that position. I understand when you say that you do not have the time to put in a complaint. That itself takes time to do, but all you are trying to do is to keep your child safe and to make sure that he gets whatever he or she needs. It is hard, and I can relate to that, because you are fighting the system. The system is always stacked against you. They have the law, the advocates and everything in place to prevent you supporting your child. I just want to say to you that I understand all that and how the system is always stacked against you. Julie Newcombe: Thank you. May I take this opportunity to say this? This is quite interesting, because Jamie came out of hospital just after Building the Right Support was announced by NHS England. He has been out all the time Building the Right Support has been operational, and I have spent that time supporting other families and campaigning, as I said earlier. I have some quotes from other families, if you would like to hear them. Chair: We definitely would. Thank you. Julie Newcombe: They are: “Seeing my little boy only just 13 years old, and mentally aged five, slumped in a chair falling in and out of sleep, while I wipe the drool from his chin. I will forever have nightmares of seeing such distress”; “He was in a comatose state, unable to stand or sit up straight, or string a sentence together, for four days”; “He hates PRN, because it makes him feel awful for days, so he won’t ask for it”; “He was kept on medication because the staff couldn’t manage his behaviour. They just did not have the skills due to limited training and he put on loads of weight”. There are examples of physical abuse: “His arm was broken in three places. He has had black eyes, wrist burns and bruises all over his body. Carpet burns have taken the skin off his face and chin”; “The hospital called to say they were taking my son for an X-ray for a lump on his chest. It turned out to be a broken clavicle bone and the injury had

Oral evidence: Oral evidence: Conditions in learning disability inpatient units 23 actually occurred several weeks earlier”; “He has started banging his head in frustration and I can see how hyper-alert he is to the staff who have used restraint on him”; “He has lost so much weight in there. His primary nurse said they were not concerned. He told me he was scared, because he was not getting any food and he thought they were never going to feed him again”; “Whenever I visited, he smelt awful. He was not washed or shaved and his nails were ridiculously long. He often wore someone else’s clothes, and they were always dirty”. “My son was kept in seclusion for up to nine hours at a time. The rule was that he could not leave until he was quiet. With his anxiety and sensory presentation, there was no way this was possible. He started to bang his head against the wall and would bite the wood in the doorframe out of desperation”; “One hospital punished my son for displaying stimming behaviours by stopping Section 17 leave”; “My son had to earn home leave by cleaning wards”; “He was left on his own in his flat. Staff would not go in there. Food and medication were passed through a window and he had to shout out if he wanted a drink or some toilet roll. Staff did not always come”. Q19 Chair: Thank you very much indeed for coming and talking to us about this situation. You have described the reality for us in very graphic terms, so I appreciate what it must have been like for you to come and explain it to us. Jeremy: As we are talking about people’s rights and equality, may I take this time to read a statement issued this week by the Equality and Human Rights Commission? This was written by Rebecca Hilsenrath, the chief executive; the Equality and Human Rights Commission is supporting legal action. “Bethany is living and being treated in shocking and inhumane conditions. She has just the same rights as anyone else—she has the right to good-quality health care, she has the right to dignity and she has the right to respect. She has, extraordinarily, been kept under lock and key for two years because of repeated failures by Walsall Council, St Andrew's Hospital, Walsall Clinical Commissioning Group and the NHS to arrange support for her. She is just a daughter who needs to live near her family, as independently as possible, and this needs to happen now. The Human Rights Act and the Equality Act are there to protect people like Bethany, and it was immensely important to us to help her and her family in this case”. Chair: Thank you both very much indeed. We have to conclude now. Julie, do you have one final point to make? Julie Newcombe: There was a question about why people are not being discharged from hospital, and I have an awful lot of thoughts on that, but I will summarise them for you. Perhaps we could speak at another time. The slow rate at which people are being discharged from hospital is for financial reasons. The transforming care millions are not ring-fenced or audited. Not all the TCPs got the money they applied for in their original

Oral evidence: Oral evidence: Conditions in learning disability inpatient units 24 plans. The private sector owns half the beds. There is a huge conflict of interest for any responsible clinician who knows that heads on beds are going to pay his salary. They are owned by investment companies or venture capitalists, profit driven with low costs, offshore holding companies and vested interests. The other financial things that really irritate parents are the silo budgeting, which Jeremy mentioned earlier, and a complete lack of up-front ring-fenced community funding, which is needed to get these people out of hospitals. There are commissioning issues. Commissioners do not challenge hospitals enough, either on the reasons for detention or on the standards of care that they are paying for. They do not always know what they are paying for and they are often funding abuse. There is little new or creative thinking at local level to provide personalised housing and care solutions, a lack of accountability throughout the system and insufficient intervention by the CQC. CTRs, which were the big flagship thing about transforming care, routinely do not get done properly, or if they are the recommendations are not followed up. They just get put in a drawer in cyberspace. There is no personalisation in the system. There is a failure to see the people behind the pie charts. Psychiatry is an issue. Why would care and support for people who do not have a mental health condition be led by psychiatry? It should be nurse led, it should be therapy led, it should be psychology led. There is an overreliance on medication that people frequently do not need. Too many of the responsible clinicians working with people with autism and learning difficulties have a forensic background; they do not have the necessary training in autism. They do not listen enough to the people with autism and learning disabilities, and they do not listen to their families and supporters. They are risk averse, keen to assess the risk of doing something, but failing to see the risk of not doing it. Thank you. Chair: Thank you very much indeed. You have both told us very openly about your personal circumstances, but have obviously built up, the hard way, a lot of expertise and understanding about the system and how it works. That will help us with our inquiry, so thank you very much indeed, and all the best to you.

Oral evidence: Oral evidence: Conditions in learning disability inpatient units 25 Joint Committee on Human Rights

Oral evidence: The detention of young people with learning disabilities and autism, HC 1861 Wednesday 9 January 2019

Watch the meeting

Members present: Ms Harriet Harman (Chair); Fiona Bruce; Karen Buck; Jeremy Lefroy; Baroness Hamwee; Lord Trimble; Lord Woolf

Questions 1–12

Witness[es]: Dr Paul Lelliott, Deputy Chief Inspector of Hospitals, Care Quality Commission; Ray James, National Learning Disability Director, NHS England; Dr Jean O’Hara, National Clinical Director, Learning Disabilities, NHS England.

Examination of Witnesses

Dr Paul Lelliott, Ray James and Dr Jean O’Hara.

Q1 Chair: Welcome. Sit yourselves down and make yourselves comfortable. As you know, we are the Joint Committee on Human Rights, and we are half Members of the House of Lords and half Members of the House of Commons. We look at all issues concerned with human rights. One of the most important human rights is the right to have your liberty and not to be subjected to inhumane or degrading treatment, or to torture. This inquiry is looking at the detention of children and young people with learning disabilities and autism. We are very grateful to you for coming to contribute to this inquiry. Perhaps I could start by asking you to introduce yourselves to the Committee and say what your remit is.

Dr Paul Lelliott: I am the deputy chief inspector of hospital at the Care Quality Commission and my role there is to lead on mental health, which includes learning disabilities. Ray James: I am the national director for learning disability at NHS England. I joined there a little over a year ago and was asked to lead a national programme of change, trying to ensure that we help people to lead exactly the sorts of lives that we would want them to lead in

Oral evidence: The detention of young people with learning disabilities and autism 1 community settings and have much less reliance on the type of things that you are interested in exploring. Dr Jean O’Hara: I am a consultant psychiatrist. I work in adult services in the community in learning disabilities. I am currently the national clinical director for learning disabilities at NHS England. Q2 Fiona Bruce: Good afternoon. My first question is to Mr James and Dr O’Hara, and it relates to whether the use of detention is appropriate when we are caring for young people or people with learning disabilities and autism, and whether particular placements are appropriate. My question is this: 2,350 people are still being detained despite years of commitments to reduce these numbers. Why are commissioning bodies spending millions of pounds to send people with learning disabilities and/or autism to institutions where, regrettably, they have the potential to sustain further harm?

Ray James: We should always begin with what is in the best interests of the individual concerned and would always hope that we can provide the care, support and treatment that somebody might need in a community setting. There may be occasions when somebody needs access to in- patient treatment. When they need access to in-patient treatment, we should try to ensure that it is specifically for the purposes of treatment and only for the period that is necessary to ensure that the treatment is successfully delivered. Collectively, our aim across health and social care would always be to help people to lead as independent a life as possible for them in other settings. The figure you quote includes adults as well as children and young people in the total. The latest figures in respect of children and young people in England are in the order of 250 to 260. In the situations where it is necessary, it will either be for a period of assessment or to try to identify appropriate courses of treatment for the young person concerned. It is probably also important to acknowledge that there is a much higher likelihood that a young person with a learning disability or an autistic young person will also have mental health conditions. For example, it is recorded that approximately 70% of autistic children and young people would meet the criteria for having one or more mental health conditions. The treatment may not necessarily be primarily in relation to the learning disability or autism; it will normally be in respect of the underlying mental health condition. Dr Jean O’Hara: First, it is very difficult to admit somebody into hospital these days. As far as possible, we avoid admission. It is probably useful to say that first. To my mind, as a clinician, there are four types of scenario in which admission might be appropriate. The first is as in the general population where there is serious mental illness, deterioration or a health and safety

Oral evidence: The detention of young people with learning disabilities and autism 2 issue for the person, whether it is serious self-harm, an acute psychotic episode or a depressive illness with suicidal ideation. That sort of admission is very appropriate. Then, while the person is in hospital, we understand that they have additional problems, such as a learning disability or autism. That is one group of patients. The second group is people we already know of who have a learning disability or autism, again who have a mental health issue that is being managed fairly adequately in the community but there has then been a breakdown of some description or an escalation of problems. There is a short-term admission into hospital to understand the issues and to test out various alternative interventions, and then a quick discharge home. That is the other type of admission I would look at. The third group is admissions from the courts of people who have offended, and they can be very serious offences. The fourth group is probably the most contentious. These are the people who present with a learning disability and autism but who happen also to present with quite severe, challenging behaviours. From my own training, I know that you do not admit somebody like this if at all possible, because there are a lot of environmental factors that affect how someone presents. Nevertheless, there are times when it is very risky and you cannot assess or treat somebody in the home environment, perhaps because it is impractical or they have younger siblings in the home. When that occurs, the question has to be about the reasons for admission. Then you address those reasons and get them out as soon as possible. Those are the four groups who, to my mind, may require admission to hospital, but only for specific referral or admission criteria, and with quick discharge. Fiona Bruce: I have the impression that there are some people in these units for whom the placement is not the most suitable, perhaps the latter group in particular. Do you know how many people are in these units and it is not the best place for them to be? Dr Jean O’Hara: We know from care and treatment reviews we have done that there are a number of people who those reviews have deemed would be ready for discharge in the next six to nine months. We are working very hard to try to discharge that group of people. They may be a combination; it is very difficult from the data to know which. Challenging behaviour is a description, not a diagnosis. It is very difficult from databases to pull out that group of people, but we have an idea about the people we could be moving into the community, and that is the cohort we are trying to work with. Fiona Bruce: You have an idea of the individuals, and perhaps of the numbers or percentages involved. Ray James: It is really important to look at what happens before admission. The real challenge for all public services across local government and the NHS is what more we could do to avoid the need for somebody to be admitted in the first place. If we can ensure that there is

Oral evidence: The detention of young people with learning disabilities and autism 3 good joint working in local areas across education, social care and the NHS, it is perhaps the most effective thing we can do to reduce the need for admission in the first place. We would like to think that, in the vast majority of circumstances, appropriate care and support can be provided in other settings. Fiona Bruce: Some of my colleagues will ask about those settings. Mr James, you mentioned that the number of children detained at present is between 250 and 260. The Committee understands that this has more than doubled from the figure in 2015, when it was about 110. Can you explain why that should be? Ray James: Yes, certainly. In part, there have been changes to the way in which the numbers are recorded and counted. In particular, autistic young people who receive treatment in mental health in-patient beds are now counted in the current number; they were not consistently counted that way when the number was 110. I do not want to give the impression that I am trying to explain away changes in data due to the way in which the data is collected and presented, but that is a helpful point of understanding. Particularly in respect of autism, there are a number of young people who first get a diagnosis after they are admitted. They would not have been included in the count at the outset, but they are once that diagnosis is afforded. It is probably helpful to understand that 70% of the overall 250 to 260 number currently have a diagnosis of autism and no learning disability. Interestingly, that figure has been in excess of 60% of the total over the period we have been talking about. That is a clear signal that, across public service, we need to ensure that we keep having more work to develop our understanding of what is needed in community settings in order to reduce the likelihood of those admissions particularly for autistic young people. Q3 Fiona Bruce: My next questions are to the whole panel, so perhaps I will ask Dr Lelliott to answer first. We have heard that care in institutions is funded by the NHS, while community care is local authorities’ responsibility. Would it perhaps not be better if the funding followed the individual in order to allow people to be cared for in community-based settings or at home, if that is best? Might that not also be at a lower cost?

Dr Paul Lelliott: It is certainly true that the funding must follow the individual. That is essential, whether it is achieved by removing the distinction between health funding and social care funding, or by making sure that the two work together in a seamless way. If I can refer back to another piece of work we did a year or so ago, we undertook a review of children’s and young people’s mental health care, which was not just for young people with autism and learning disability. One of the main conclusions we reached was the fragmentation of the

Oral evidence: The detention of young people with learning disabilities and autism 4 system, not just in the multiplicity of providers of care but in the commissioning arrangements, the assurance arrangements and even the regulatory arrangements. When it comes to regulating services for young people, the responsibilities are split between a number of regulators. Fragmentation and complexity are issues. How do you resolve those? You do that either by getting the parts of the system to work well together or by changing the system. Ray James: Interestingly, before I joined the NHS, my whole career has been in local government. I had the privilege of serving as the president of the Association of Directors of Adult Social Services a couple of years ago. It is true that, at both the individual level and the local area level, you can make best use of public money by putting it together and having a very clear focus on the needs of the individual. We have encouraged local areas to pool budgets and provided advice on funding transfer agreements. Even in areas where there is no formal pooling because it has not been possible to reach agreement across local government and the NHS, there are ways to do something akin to open book accounting with a transparent and shared understanding of what public money is being used for. Personal health budgets, personal social care budgets and integrated personal health and social care budgets have made a real difference to the lives of many individuals, and we would support and encourage that. Q4 Fiona Bruce: I have a couple of final questions. Does the current system give private providers a financial motivation to unnecessarily detain people? Ray James: One would hope that the best interests of the individual concerned were always paramount in driving the decisions that are taken. I have certainly heard family members talk about the potential conflict of interest in situations along the lines that you describe. For me, it ought to be about where the individual will receive the best quality care and support that they need at that moment in time. That ought to be the determining factor in the choice of who provides the care and support, always with an eye to ensuring that the aspiration is to help that individual to lead a life of their choosing as independently as possible in the longer term. Q5 Fiona Bruce: As a final question, might we be able to radically improve the support that we give these individuals if we had much earlier diagnosis? I just give as an example a mother who came to see me at my constituency surgery last week. She has a young adult son who was referred by his GP for an ADHD specialist assessment, and she was told in the autumn that the waiting time would be over three years. Is this not one of the major problems? Dr Paul Lelliott: Yes, it is. If I refer back to the review of children and young people’s mental health, that was another core finding. Some young people with more common forms of mental health problem wait a long

Oral evidence: The detention of young people with learning disabilities and autism 5 time for assessment, but for people with more specialised needs, including autism, autistic spectrum disorder and ADHD, we have undertaken inspections where we have found waiting lists that are a year or two years, and sometimes more. Ray James: It is probably important for me to say that when NHS England published the long-term plan earlier this week, it included a commitment to work towards earlier diagnosis. Fiona Bruce: Of necessity, that presumably includes training more specialists. Ray James: Yes. Chair: To follow that up, are you acknowledging that because there are long waiting lists, as Fiona raised, people do not necessarily get the care and support they need in the community, in their own home, early enough? This then ends up with a crisis. Because there is not a high enough level of support in the community to deal with the crisis, they end up being detained in a residential setting, which then damages them and makes them worse. The ability to get them out is impeded by the lack of support in the community, which makes it difficult for them to get back into the community. Meanwhile, the financial incentive on the private provider is not to get them out as quickly as possible, because as long as they are there they are an income stream. Is that, in sum, a picture you recognise? You have talked about your intentions, the policies and the aim, but is that a picture you recognise for some, if not all, young people with autism? Ray James: I would not describe it particularly in the way that you have, Chair, but there is a range of risks in what you have articulated that I recognise and hear talked about. The point specifically about early diagnosis is this: in order to respond most appropriately to an individual’s needs, the better you understand them, and the earlier you understand them, the more effective you are in responding to them. In areas that do this well, they focus work on early diagnosis but they also look at meaningful involvement of the individual and of family members. Their collective contribution to understanding the individual as well as possible in order to provide the care, support and treatment they need is central to beginning the journey well. To the point you made about crisis, it is true that it may very often be points of crisis that heighten the risk of somebody being admitted to an in-patient setting. We have been clear in the long-term plan that we would expect to see seven-day crisis services in every area of the country. There will be a workforce challenge in ensuring that there are enough people in every part of the country with the skills and training required to respond appropriately, particularly to people with the most complex needs. To the other issue that you raise of where the money is in the system, we have already this year deliberately moved money from spend on specialist in-patient services up front, some £53 million, supplemented by a further

Oral evidence: The detention of young people with learning disabilities and autism 6 £22 million of new investment, to accelerate the rate at which community-based services become available in local areas and reduce the reliance on in-patient services. Q6 Baroness Hamwee: My first questions are about inspection. The Chair, understandably, as we are the Joint Committee on Human Rights, introduced this session by referring to the dangers of breaching human rights, including detention and inhumane treatment. I wanted to ask whether inspections are picking up on cases, and whether there are the powers to do so, where there is the risk of breaching human rights, particularly with regard to restraint and solitary confinement, and in connection with solitary confinement— I am sorry; that is a long sentence—all that that carries with it. One piece of evidence we have heard and read about is of detainees being given their meals through a hatch in a door. I mention that in particular, because it shocked me very much. Are there sufficient powers? Are problems being picked up?

Dr Paul Lelliott: Can I briefly describe the various duties and responsibilities that we have, because they are relevant? First, we are the independent regulator of health and care in England. We have responsibilities under the Health and Social Care Act to assess, register, monitor, inspect and regulate services. We are also responsible for monitoring the Mental Health Act in England. With that particular function, it is our responsibility to ensure that the human rights of people who are detained are respected. We have a third set of responsibilities as part of the national preventive mechanism under the operational protocol against torture and ill treatment. So we have three sets of responsibilities, and they all take a human rights perspective when we assess the circumstances of people detained in hospital. Baroness Hamwee: Are the powers to inspect adequate? Dr Paul Lelliott: In our regulatory powers, we have the power to inspect. We rate services, but we also have enforcement powers, which are both civil and criminal. They range from making requirements on services to issuing warning notices and putting limitations on a provider’s registration. Ultimately, we have the power to cancel the registration of a provider if it fails to meet the regulations. Under the Mental Health Act, we have unfettered access to any place of detention and to people who are detained. Baroness Hamwee: Do you make unannounced inspections? Dr Paul Lelliott: Yes, we do. Increasingly, our inspections are unannounced. In the early days, when we took comprehensive inspections, because of the scale of the inspection we would have to announce them. But now a high proportion of our inspections are

Oral evidence: The detention of young people with learning disabilities and autism 7 unannounced. Mental Health Act visits by Mental Health Act reviewers are fully unannounced. Baroness Hamwee: When you find that staff have treated patients badly, what data do you have about disciplinary action that has been taken against them? Dr Paul Lelliott: If we conclude that staff have been abusive towards patients, we inquire very closely as to the measures that the provider had taken to hold that person to account. We have an agreement with both the General Medical Council and the Nursing and Midwifery Council to share information about individual professionals who might have acted in a way that is against the professional code. Baroness Hamwee: Turning it the other way round, do you think that establishments are keeping proper data about disciplinary action? Dr Paul Lelliott: That is a question that we always inquire about. We ask not just about the professional and managerial supervision and the training and appraisal of staff but about how performance is managed, which includes misbehaviour. Baroness Hamwee: Can I ask the NHS people about the other side of the coin and whether commissioning bodies actually use CQC reports? Is poor performance taken into account when decisions are made about placements? I am sure you are going to tell me that they do not just sit on the shelf and gather dust, but I would be interested in digging down a little on that. Ray James: From my local government and NHS experience, yes, I would expect CQC reports to be used. They are also often one of the most accessible forms of information to family members and to individuals themselves because of the way they are recorded on the public record. You would expect to see good close working between a local authority, the NHS and the CQC, were there any concerns about the quality of care, because there are often situations where a number of different local areas are commissioning care and support with one provider. Therefore, the liaison is followed through to ensure that other public bodies have the opportunity to satisfy themselves of the well-being and safety of the individual they have commissioned care for. Yes, it should be used. Yes, there should be continuous working and sharing of intelligence where there are concerns. Often, we can respond most robustly and effectively when that sort of information is being appropriately shared across agencies. Baroness Hamwee: I do not want to be pedantic, but you said that there should be. Is proper use being made of them? Ray James: Yes, from my personal experience. I have been involved in safeguarding processes during my time in local government where that has been the case, and have seen it through my national role as well. I have been aware, since I have been at NHS England, although I am less involved in individual packages in that way, of there being clear action in relation to providers where there have been concerns of that nature. That

Oral evidence: The detention of young people with learning disabilities and autism 8 said, it is probably right to acknowledge that you and we have heard of circumstances that are a very salutary reminder that that would not appear to be everybody’s experience. Our challenge is to ensure that that happens up and down the country in a consistent way for everybody. Baroness Hamwee: We will have a question later about complaints. We will be interested in how you respond to that. We have heard that the rates of restraint and of solitary confinement have increased very considerably. Why is that? Ray James: Again, part of the explanation here is that the number of providers submitting the data has increased. Part of the reason for the increase is that there has been a 25% increase in the number of providers supplying the data. Baroness Hamwee: Sorry, can I just pursue that? You do not have complete data. It is getting better, but you do not have data from all providers. How big is the shortfall? Ray James: There is an issue about the degree of consistency in what is described as restraint and how it is recorded. Work is happening across all the arm’s-length bodies to improve the consistency of the application, recording, training and oversight. We are likely as a consequence of that work to continue to see some reported increase in levels of restraint as we get better visibility on where it is happening in overall terms. Through the discussion, training, challenge and scrutiny, we would expect all that to lead to longer-term change. That work is predominantly happening in mental health settings, but of course it is relevant to people with a learning disability and autistic people. Baroness Hamwee: Are you talking about definitions, or are there categories of statistics that are being reported in some cases and not in others? Dr Paul Lelliott: This is an issue which the CQC flagged up last year. We published our report on the state of the mental health services after we had inspected every service at least once using our new approach to inspection. At that time, I wrote to NHS England flagging up concerns about how physical restraint is recorded and reported. The problem we had as a regulator was that we could not rely on the data to compare one provider with another. If we saw high reported use of restraint, we did not know whether that was because a lot of restraint was being used more than in other services, or whether it was just a very good reporter. We flagged up issues about the definitions used—there needs to be much more specificity about the type and duration of restraint—and the consistency of reporting so that the definitions are applied consistently. Services that are very good reporters of restraint will report any hands-on contact with a patient as restraint. A gentle guiding hand that might direct a confused person away from a trip hazard would be reported as restraint by some services, whereas other services would only report holding someone on the ground.

Oral evidence: The detention of young people with learning disabilities and autism 9 The other issue we flagged up was the inconsistency of training provided to people who use physical restraint. In response to that concern that we raised, NHS England has been very proactive in addressing those problems. In April 2019, NHS Digital for mental health services, which will include learning disability wards, will bring in the new dataset. That will give us a much better handle on what type of restraint is being used, how much and by whom. Baroness Hamwee: Have you had an input into what headings are used? Dr Paul Lelliott: Yes, we have been very closely involved with that work. As Mr James says, that is translating across into learning disability services too. Baroness Hamwee: Perhaps we should say for the transcript that both our other witnesses nodded. Why is prone restraint being used, to a pretty considerable extent from what we have heard, when the guidelines warn against it? Perhaps I should be asking you. Ray James: The national guidance is very clear here. There may well be a very small number of circumstances perhaps in which an individual has expressed a preference that if they are distressed to the point of recognising that they may need to be restrained, they would prefer it to be done in that way. That is about the only exception I can think of. The national guidance is really clear. Of all the types of restraint that are reported and recorded, you rightly highlight that one. It is arguably the area of most significant concern, and we would be very keen to see significantly reduced usage. There are very interesting examples of good practice being applied in some parts of the country already. The Mersey Care NHS Foundation Trust has adopted a programme called No Force First, which has seen very significant reductions in the levels of use of restraint. From memory, it was something like a 47% reduction. There was also a consequent benefit of about a 23% reduction in assaults on members of staff. As well as improving the consistency of the recording, we are keen to make sure that there is better sharing of the leading practice in this area. Indeed, that particular NHS organisation is currently involved in advising overseas, such is the perceived reputation of the work that it has done. Baroness Hamwee: Those are still big numbers. Ray James: Yes. Q7 Chair: Can I pick up on the point you made, Mr James, about people having a note on their file, at their request, that if they need to be restrained they should be put in the face-down prone position? Is that why it is happening, although guidance says this should not be happening: that people are putting in a prior request and approval? How prevalent is that? I do not know what other Committee members think, but I can imagine a lot of people really raising their eyebrows at this. Is it quite normal that you will say, “If I have a crisis, please put me face down on the floor, because

Oral evidence: The detention of young people with learning disabilities and autism 10 that is how I want it”? Ray James: Apologies if I have created that impression, and thank you for the opportunity to clarify it. I was trying to describe the very exceptional circumstances that were the only time in which I might consider that it would be felt to be appropriate. It does not justify the numbers, and we would want to see lower numbers. Chair: Is it appropriate for somebody to give prior approval in advance for something that the guidance says should not happen? Dr Paul Lelliott: The Mental Health Act code of practice, which is the advisory guidance we pay regard to, talks about not using prone restraint unless there are cogent reasons. Mr James is describing how there are very, very occasionally reasons why it is the preferred option. Someone might, for example, have a problem with their back or some other physical ailment that means holding them on the ground on their back is either more uncomfortable or more dangerous than holding them on their front. That is very unusual, but Mr James was explaining the exceptional circumstances in which it happens. There is one other circumstance in which prone restraint can occur. If someone is very agitated and staff intervene, sometimes the first point of contact with the floor is face down. The expectation then is that the person should be turned into a safer position for restraint, but good reporters will report that as being prone restraint, even though the person might have been in that position for only a few seconds. That is the other circumstance in which prone restraint is unavoidable and would be reported as prone restraint. I agree with the sentiment that it is a less safe procedure than other forms of restraint and should be avoided at all costs, unless it is absolutely unavoidable. Chair: Is there going to be publication by NHS Digital from now on of the information that came out by way of a freedom of information request in 2018, which included statistics on restraint and solitary confinement? Is that now going to be published as a matter of course, or will people still have to make freedom of information requests to get it? Ray James: The intention with the new dataset that Dr Lelliott described is that we will move to a position where there is a mature set of publicly reportable data, which will be open to scrutiny. I am not aware of the precise date for intended publication. I would be happy to let the Committee have it in writing subsequently, if that is helpful. Chair: You will be asked, anyway, by freedom of information. Whatever state of maturity it has reached, it is going to be in the public domain. Is it not better to just put it in the public domain with a footnote saying, “We are still maturing this”? Ray James: The sentiment is that through greater consideration, scrutiny and discussion of the data, it will lead to improved practice. I would agree with that sentiment. Q8 Jeremy Lefroy: Good afternoon. Dr Lelliott, you commissioned an

Oral evidence: The detention of young people with learning disabilities and autism 11 investigation into restraint, seclusion and segregation in ATUs last year, which is reporting, we understand, in March 2020. I wondered why it is going to take so long and what you expect it will say that you do not already know from your normal inspection routine. Dr Paul Lelliott: Regarding the thematic review, the terms of reference require us to provide an interim report next May and then the final report in March. I would say two things about the timescale. First, the terms of reference also make it very clear that we should make known any learning and recommendation that comes out sooner. We intend to communicate immediately as soon as we reach conclusions or form recommendations. As we go round the country visiting people who are held in these circumstances, if we have concerns about their welfare we will escalate those concerns immediately. That includes the Care Quality Commission going in and doing an unannounced inspection, if necessary. The reason why it is going to take the time it is going to take is because the questions we want to address are questions we do not yet have answers to. To get answers to them, we need to do a very thorough piece of work, which will involve investigating most, if not all, people who are held in segregation or long-term seclusion. To do that work, we have to bring a team of people together. We do not have people who are sitting round waiting to take on these tasks. We have to bring them together. We have to develop our approach. We then have to identify all the people who are held in these circumstances, arrange the visits, and do all this while engaging fully with the very wide community of people who have an interest in this area, which includes people with lived experience and experts by experience. I am sorry to say that we cannot do that thorough piece of work any sooner than the timescales we have given. The types of questions that we want answers to that we do not have at the moment are about the circumstances in which these people have ended up in the situation they are in. The thematic review will include young people with autism, but it is not just about young people with autism. It is also about people with mental health problems and adults with learning disability. Because this is commissioned under Section 48, it gives us powers that we do not ordinarily have to look at commissioning. We can look at the role of commissioning that might have resulted in this being the endpoint of care or might be contributing to a person remaining in this situation. Those sorts of questions cannot be answered through our normal inspection visits. When we inspect services, we encounter people in this situation, but when we inspect we are looking at a whole host of other issues. We are not focusing on an in-depth review of all the circumstances surrounding a person’s situation.

Oral evidence: The detention of young people with learning disabilities and autism 12 Q9 Jeremy Lefroy: Thank you. That is very helpful. Can I ask colleagues from the NHS what the NHS is doing, during the time of this investigation, to improve conditions for people who are detained? Dr Lelliott has already said that they will produce interim reports or findings if there are things that they feel could change. I just wondered what you are doing within your work. Ray James: Our primary objective would be to improve the services available in community settings and reduce the likelihood of people needing to be admitted to in-patient settings. We have been strengthening the crisis services, intensive support services and community-based services that can work with people who are at risk of offending or have what is described as a forensic history. We need to be clear about what we do in relation to the oversight of care that we commission. The long-term plan talks about continuing to work with the CQC and others on reduced use of seclusion and restraint. It also says that the recently introduced NHS Improvement standards for people with a learning disability will be applied to all care that we commission. That will be whether it is in the NHS or the independent sector. There are some clear components of that framework that relate to people’s rights as well. Local areas do this work best where they have the meaningful involvement of experts by experience and family members in checking that quality and in providing feedback and information that can be acted upon. We will continue to stress the importance of care and treatment reviews and care, education and treatment reviews. This was a change in policy that was introduced a couple of years ago. As I said earlier, four out of five of those are now resulting in a decision not to admit but to alternative services being put in place first. Our focus will continue to be on what every local area needs to do with and for an individual and their family to reduce the risk of admission. Jeremy Lefroy: Can I move on to the CQC report on St Andrew’s Hospital? I understand that, as of today, the report has still not been published. Is that the case? Dr Paul Lelliott: That is correct. Jeremy Lefroy: Can I ask why it has not? We understand that it was expected in December. Dr Paul Lelliott: The inspection you refer to was undertaken in November and we have only recently finished gathering the evidence that we need. I was particularly interested to make sure we had talked to families and carers particularly of young people who are held in segregation. The evidence collection is now complete. After we quality assure the report, it needs to go to the provider, which has a period of a couple of weeks to comment on the factual accuracy of the report, and we will then publish it.

Oral evidence: The detention of young people with learning disabilities and autism 13 This is not the first or only inspection we have done of these services. I have looked at the records, and we have undertaken nine inspections of St Andrew’s over the last two years, and in the last year this is the third inspection that has involved the children’s services. We have had pretty close contact with St Andrew’s during the last year. Jeremy Lefroy: What has been the result of those inspections and reports? Dr Paul Lelliott: Focusing on the area of interest for this Committee, the nine inspections included other services provided by St Andrew’s, not just the children’s services or learning disability services. In a number of those services in 2017, we identified concerns with seclusion and segregation, about the procedural management of those interventions. In October 2017, after we had raised those concerns, one of our Mental Health Act reviewers visited the young persons’ ward and, again, focused on segregation and exclusion. Their conclusion was that at that time the expected care plans and education programmes were in place. Then, in April 2018, we reviewed care records in the children’s mental health services. Again, at that point, we concluded that there were no grounds for taking regulatory action. That was the last time we visited. This current inspection, as I say, will be out in the next few weeks. Q10 Ms Karen Buck: You will probably be aware of some of the witnesses we have had in the course of the inquiry. Listening to the evidence from some of the parents we have spoken to, we have heard concerns expressed that, when they have raised complaints, when they have raised concerns about their children, there have been consequences. They feel that action has been taken by the units that has been detrimental to them and their relationship with their children. What is your view on that, particularly from the NHS, and have you undertaken any inquiry into the extent to which those concerns of the parents are justified?

Ray James: As a result, in part, of some discussions I had with parents that were facilitated by the Challenging Behaviour Foundation and Mencap a couple of years ago, we have worked to introduce a new approach to complaints handling called “ask, listen, do”. It has been led by parents and shaped with them to set out the way in which we would expect things to happen. Indeed, Baroness Hollins was kind enough to host a launch of that in this House for us. We have done that work to be clear that we think there is very real benefit in making the effort to ask in the first place, not waiting and relying on complaints coming forward. When messages are received, they should genuinely be listened to and lead to some action. Dr Lelliott may have more to say in relation to what the CQC does when it looks at complaints functions et cetera, and their use by registered providers. The

Oral evidence: The detention of young people with learning disabilities and autism 14 NHS, alongside any other commissioners, will have a role to play in the resolution of those. We would not expect providers to take that stance in relation to individual families. If we get details of anything, we will act robustly. Ms Karen Buck: Do you know how many times you have acted in response to these? Is that routinely monitored? Ray James: As I said earlier, I am not personally directly involved in individual cases. I would be happy to talk to my colleagues who work on the prescribed specialist commissioning teams to get the detail of that. We monitor complaints information, but on the specific element of whether parents have said that that has led to adverse reactions to them, I would need to go back and inquire about that. We would encourage exactly the opposite: we would encourage providers to actively ask for feedback. Ms Karen Buck: I am sure you would, and there will be separate questions on the actual complaints procedure, but it would be very helpful if you could come back to us with an indication as to how these concerns about possible reprisals—I hesitate to use that word, but we know what we mean by it in this context—are brought to the attention of NHS England and what happens. Very specifically, you may or may not be able to answer this question on the use of injunctions, which has been raised with us. Are you able to say whether you monitor the extent of the use of injunctions where complaints and concerns are raised? Ray James: I am not aware of NHS England ever using an injunction in that way. I made a point of asking the legal team before the proceedings, and they are not aware of NHS England ever doing so either. It may well have been other bodies that were referred to in the evidence that you heard. We would have a look at any specifics, but I am not aware of NHS England ever doing something. It is not our policy to do so. It is quite the opposite. As I said earlier, we would always encourage much more constructive dialogue, seeking to use the fact that parents are often the people who know their family member best. They should play a central role in helping to shape what is needed and what the appropriate care and support would be. Ms Karen Buck: In Bethany’s case, one issue that was brought up to us was the use of data protection and concerns about the privacy of the patient sometimes getting in the way of the relationship with the parents. There is a balance to be struck and the patient will have legitimate needs for their privacy to be safeguarded in some circumstances, but where permission is given, or has been assumed, that should not get in the way. What is your view on the extent to which data protection and privacy were used as a justification for units not relating to parents in the way that they should?

Oral evidence: The detention of young people with learning disabilities and autism 15 Ray James: I have two thoughts on that, and I have to be careful that I do not present this in the way I did earlier. Primarily, I do not see that that should be the case in those circumstances. There might be a few exceptions where an individual has capacity and has expressed a desire for it not to be communicated or shared in that way with certain people, but that is a very small number of cases rather than the norm. We would always encourage the discussion to take place in a meaningful and open way with the best interests of the individual receiving treatment at its heart. Ms Karen Buck: I am hearing your words of reassurance, but presumably you are aware that in the NHS, or in the services which the NHS will sometimes contract, reasons and justifications will be given that are not necessarily in accordance with policy or, indeed, even the law. Ray James: Where specific issues of that nature are brought to our attention, I would hope that we would always work to resolve them. Where we are commissioning the care or treatment of an individual young person, there is a case manager assigned to that, who would be involved more directly in those circumstances. I am probably more familiar with the difficulty about commenting publicly. I am not sure if that is what your question was about. You were talking about the sharing of information with family members and others in that way. Ms Karen Buck: They are two separate issues. Ray James: Yes. On occasion, other public bodies may have statutory duties or powers in relation to the individual concerned, but, again, none of that should be a barrier to people coming together in a way that consistently focuses on what is in the best interests of the individual. Ms Karen Buck: Are you clear, as NHS England, in getting that advice out to all the branches of the service that may be involved here? Can more be done to improve that? Ray James: We are clear about our contractual relationships and what we express there. If anything is brought to our attention through the case managers, we expect in local areas that they will work to resolve it. Ms Karen Buck: Can I ask the Care Quality Commission whether you have a view on this, and indeed whether family members sometimes come directly to you to ask for CQC involvement in this? Dr Paul Lelliott: Yes, we get approached directly by family members. Sometimes the family members come through national organisations that represent their interests—bodies such as the Challenging Behaviour Foundation. We often get feedback then. We would respond to each contact on its merits. We would certainly expect the local inspector to follow it up. Invariably, that would involve a conversation with the family member to find out what the issue was. I quite often meet family members of people who have concerns. Ms Karen Buck: If you are tracking this, is it on the increase? Do you get a sense that it is?

Oral evidence: The detention of young people with learning disabilities and autism 16 Dr Paul Lelliott: I do not. I could not say that it is on the increase, but I think there is a long-standing problem of family and carers being excluded from care decisions. I would not take my evidence from this very specific area, but the Mental Health Act review report that was published very recently acknowledged that family members are often excluded from being given appropriate information and from involvement in decisions. Quite often, the grounds for excluding them are on the basis of confidentiality. There is a problem in this area. I think the Royal College of Psychiatrists has issued guidance about the appropriate way to involve family and carers both in receiving information and in decision-making about people’s care. It is an issue. There are many clinicians around the country who do not have it right, but I am drawing now on my past clinical experience, because I was a consultant psychiatrist. Ray James: It was the level of concern from family members that led us to work with them to produce the new guidance. Clearly, that is also suggestive of a significant level of concern. Ms Karen Buck: As a last question, what is the procedure for achieving the same ends where we are dealing with young people who perhaps do not have involved family members? Ray James: There will be a couple of potential arrangements there. We would expect our own case managers who are overseeing the case to do that, but there also ought to be arrangements for advocacy in respect of the individuals concerned. Where there are statutory provisions associated with their mental health, similarly there will be clear expectations in the code of practice. Q11 Chair: Has there been any consideration of requiring an assessment of the level of positive approval by parents or family members in relation to the appropriateness of the placement or the care and treatment of the young person in the placement? After all, the parents are, albeit not necessarily mental health care professionals, the people who care most about these children and adolescents, who have the long-term relationship with them. If they are expressing concern, they are like the canary in the mine, are they not? That should really make people concerned. I do not know whether you are aware that universities and higher education institutions have a thing called the National Student Survey. Every student can—they can decide not to—fill out a form to contribute to the National Student Survey for their own institution. Each student has to rate their higher education organisation as to whether they are being properly supervised, whether there is proper feedback, whether it is all being properly arranged. The higher education institutions are rated every year according to these categories. Their knees tremble at the thought of whether

Oral evidence: The detention of young people with learning disabilities and autism 17 their students, who of course they cannot control, are anonymously going to give them a good bill of health according to these criteria, which are public policy criteria. It makes institutions really think about what they are delivering for students. Have you thought about whether, in every case where a child or young person is detained in one of these institutions, there should be a requirement for the parents to sign, anonymously, according to various criteria: “Do you think this was the appropriate placement?” “Is this person in the right place—yes or no?” “Is the treatment and care of this person in this place good—yes or no?” “Have you ever had cause to complain? If you have, was your complaint listened to when you raised a concern?” Why do you not put it into their hands, instead of or in addition to yours? You are the macro inspector and you have teams of inspectors going in professionally, but you must wonder sometimes whether you are missing something that is going on that parents know about. If parents do not know about it, it is probably not going on. Have you thought about the equivalent for these institutions to what is done with the National Student Survey? If it can be done at the scale that there is with students, which is a much bigger scale, surely you could do it. Then you would get such a good picture about whether a complaint is an outlier and an exception, or whether there is something going on. At the end of the day, it is very subjective, is it not? If the parents are not happy, even if their unhappiness is not objective, their subjective unhappiness as the people who care most about the child should surely matter to us all. Dr Paul Lelliott: Yes. The first remark to make is that the Care Quality Commission has something a bit like that. Every year, there is a survey of people using community mental health services. We get tens of thousands of responses. As well as publishing nationally what people’s experiences are of these services, we break them down by NHS Trust. That information is fed back to the trust. If a trust is performing particularly badly, that is picked up on. So we have something like that. Chair: That is for the community. Dr Paul Lelliott: That is right. Chair: I mean by institution. Dr Paul Lelliott: It is by institution in the sense that the results are broken down for each of the 54 mental health trusts in the country. Chair: Yes, but the trust is not an institution as the parent would know it. You get the point. Dr Paul Lelliott: Yes. I would expect that, when we inspect, every effort is made to talk to the families.

Oral evidence: The detention of young people with learning disabilities and autism 18 I take the point that their perspective on care is very valuable. Although they are not independent, because they have a huge interest in the young person, they have a fresh pair of eyes on the quality of care being provided in that institution. The feedback they give is absolutely vital. What you are suggesting is a very interesting idea. I am not sure how to put this, but if we had the funding it is something we would think about. The point underlying your suggestion is that families have vital information that we would hugely benefit from in our regulation and inspection of services. This is totally valid. I accept that 100%. Ray James: I have a couple of thoughts. First, NHS England is fortunate enough to work with two colleagues who we employ directly as parent advisers, as a result of their lived experience as parents. They bring their expertise and their connections with other parents to inform our work and approaches. We would expect the contribution of parents to be central to the care, education and treatment reviews that should always happen before a young person is admitted, so that they are involved in helping to look at the feasibility of every possible option. Chair: But do you record the outcome after? You say that you expect them to be included, but once the decision is taken do you record whether the parent thinks it is the right or wrong decision as far as they are concerned? It is about the placement and the care within the placement. Ray James: As I mentioned earlier, 79% of those, four out of five, lead to a decision not to admit at the moment. We have not done the specific work that you describe in relation to the parents’ view on the choice of placement, but they should always be involved in that. I want to draw attention to another issue, particularly for people with a learning disability and autistic people. There is an approach to checking the quality of a service provider that directly involves other people with lived experience. It is called quality checking, and you can often have much more meaningful feedback and conversations through this—for example, another person with a learning disability who has been trained goes into the facility, and will talk to people to get their views and feed them back. That is not the sort of systematic rating that you talk about, and it is interesting that the CQC may consider something of that nature. I have always felt that the more public and transparent you can make people’s experience of a service provider, the more likely that service provider is to take action to improve their experience. Chair: The body that does it in higher education is not the OFS, the regulator; it is not the CQC. It is the institutions. They have the obligation to do it. There is something of value in the fact that it is routine. It is not just based on whether you are getting a load of inspections. Bearing in mind that we are talking here about the particular dangers and vulnerabilities in a residential setting, when it is in-patient, when it is detention, it is a small number, but the issue of what is going on in that institution is crucial.

Oral evidence: The detention of young people with learning disabilities and autism 19 Why do you not want to have the security of knowing that every year, in respect of every in-patient, the family are being asked to positively certify? The other things that you have mentioned are all very encouraging, but it is not the same. Why do you not pilot it, for example? Ray James: I have two thoughts. To the point you made at the beginning about it being the responsibility of the university, the provider, the ideal would always be to commission services from organisations that have a robust and sincere approach to quality, where they involve a degree of independence in their approach to quality, in the way you describe there. Our efforts tend to focus on the individual level. I am happy to undertake to come back on what we might be able to do more systematically, in aggregate, to share the information and feedback we receive from family members. Chair: You have lost me there. I am afraid I do not understand your response. It is too complicated. Do you think it is a good idea that when there is a residential placement the parents should positively certify whether they think it is the right placement? Should you know that in respect of every placement? Should you know every year for every parent that they think it is the right placement on a continuing basis, and that the care is good? Ray James: It has to be helpful if we can seek feedback more consistently from parents about their experience of the placement. That may include the decision at the outset, but it would also be useful to get consistent feedback about their experience during it. Chair: We need something routine, rather than consistent. It has to be absolutely routine and hardwired in the system, has it not? Otherwise you are going to get gaps. Anyway, it is just a thought. I will draft the form for you if you want, because we have heard from the parents about their concerns. The form would be very easy to draft, and they are all online, so it would not cost much. Ray James: We would probably ask parents to help us to design that in the way they thought was best. As to the principle behind what you were suggesting, when I say “consistent”, I do not mean anything that is in any way different from routine. Apologies. Q12 Lord Woolf: I have a very clear picture. You recognise that having families’ views in cases where there is relevant family is very important. You also told us about the steps you are taking to find out families’ views. Finally, on this matter, could you give us your impression as to whether, at this time, the families have got to a position where they appreciate what I have just said is your attitude? In other words, do they recognise that you are looking for their views and you regard their views as being important?

Oral evidence: The detention of young people with learning disabilities and autism 20 Ray James: We have had very helpful involvement with individual family members and organisations that represent them or that they are a part of, and we value their input and will continue to do so. I think families would recognise that some difference has been made, but they are understandably impatient that that difference is made consistently in every part of the country, for every individual and their family. Lord Woolf: Because of that, it is an area where you really have to concentrate. Would you agree? Ray James: In part, that is why we have chosen to employ directly two family members: so that their insight and their expertise can help us sustain that focus. Lord Woolf: Is two enough to employ? Ray James: We employ two in the central team nationally. We are really keen to extend the employment of people with a learning disability and autistic people, as well as family members, in every area of the NHS. Indeed, we would commend it more widely across public service. The long-term plan includes some commitments for our part in that respect. Lord Woolf: Thank you very much for that. I wonder if Dr O’Hara has any comment to make on this area. You have been rather left out of the direct answers. Dr Jean O’Hara: Yes, thank you very much. I would like to mention my colleague in NHS England who is the lead psychiatric clinician. He has been working very hard with an organisation called Bringing Us Together. It is a family organisation, working in partnership with psychiatrists so that we go forward together. That is a very big step, because I think many psychiatrists, when they see somebody in their clinics or whatever, do not appreciate the whole history that the family has gone through before they come through the door. That sort of insight and real partnership with families is really important. That is a very positive step. Lord Woolf: It sounds as if it would be a very good idea to get the psychiatrists’ assistance as well on this particular aspect. Dr Jean O’Hara: Yes. Chair: Thank you very much indeed for coming to give evidence today. It has been extremely helpful. Thank you for the work you do as well.

Oral evidence: The detention of young people with learning disabilities and autism 21 Oral evidence: The detention of young people with learning disabilities and autism 22

Joint Committee on Human Rights Oral evidence: The detention of young people with learning disabilities and autism, HC 1861

Wednesday 27 March 2019

10.55 am

Listen to the audio from the meeting

Members present: Ms Harriet Harman MP (Chair); Ms Karen Buck MP; Scott Mann MP; Lord Trimble; Lord Woolf.

Questions 13–19

Witnesses

I: Mr Simon Duffy, Director, Centre for Welfare Reform; Dame Christine Lenehan, Director, Council for Disabled Children; Ms Caoilfhionn Gallagher QC, Doughty Street Chambers.

USE OF THE TRANSCRIPT

1. This is an uncorrected transcript of evidence taken in public and webcast on www.parliamentlive.tv.

2. Any public use of, or reference to, the contents should make clear that neither Members nor witnesses have had the opportunity to correct the record. If in doubt as to the propriety of using the transcript, please contact the Clerk of the Committee.

Oral evidence: The detention of young people with learning disabilities and autism 1

Examination of Witnesses

Mr Simon Duffy, Dame Christine Lenehan and Ms Caoilfhionn Gallagher QC.

Q13 Chair: I welcome you to this session of our inquiry, which is looking at the detention of children and young people with learning disabilities and autism. Half the members of the Joint Committee on Human Rights and are from the House of Lords and half from the House of Commons, and we are concerned with human rights, as the name explains. One of the most important human rights is the right not to be detained wrongfully. Another very important human right is the right to be free from inhuman or degrading treatment. That is the focus of our inquiry. We have been very concerned about unnecessary detention in assessment and treatment units. NHS England, indeed, has confirmed that some people in these units do not need to be there. We are grateful to you for coming to give evidence today, because you have considerable expertise, so I start by asking you why, when it is not in people’s best interests to be in a particular placement, they end up there. Is it because there are more appropriate places for them but the system fails to put them in the right place, or is it that the needs of these individuals are complex, so there is just no alternative care. Also, what assessment is made, as people continue to be detained, of whether they have been given the right placement? We are looking at where they are detained and how they continue to be detained when that is not in their best interests. Dame Christine Lenehan: There are groups of children in both assessment and treatment units and in residential special schools who are in full-time placements but do not need to be there. At any one time, at least 80% of the people in placements do not need to be in them either at all or for the length of time that they are there. At the moment, the average length of stay in an ATU for a child aged under 18 is about eight months. Sometimes it is longer than that—up to two and a half years.

Why are these children there? They are there because of repeated system failure. They are often quite easily identifiable early on in the system, but it repeatedly fails. There is something about the level of austerity that is no doubt impacting on the resources to support these children in the community, but even in the days when we had money, children would still be failed and still be in the system. I think it is fundamentally because it is a small group of children. That should make it easy, but actually it makes it really hard.

On the footprint for commissioning and the understanding, we know what model would keep these children in the community and we have seen some good placements showing how to do that, but that model is not routinely commissioned or understood.

What adds to that is that you are taking very unhappy and insecure children and putting them into terrifying placements, and their behaviour

Oral evidence: The detention of young people with learning disabilities and autism 2

tends to get worse. When that happens, people are frightened. They then end up in restraint, which is unlawful, and physical intervention, which is also unlawful. But the children become so frightened that the clinician’s view becomes that the children would not be safe enough to be outside in the community or that the community is not safe. However, it is often the place of detention that is actually making these children more difficult.

One of the challenges I had with my review was when I went to see new clinicians and commissioning officers and asked them what a good post- ATU placement looks like. People did not know. Last week or the week before, we looked at some children who are caught in a revolving door. There is something about understanding the basics, understanding the children and understanding the points of intervention that are successful and then introducing a model of care that meets need.

Chair: When you say that a child does not need to be there, what is the problem with a child being in a place where they do not need to be? Why does it matter?

Dame Christine Lenehan: If you go back to your human rights stance, it matters significantly because it completely and utterly restricts their liberty. These are secure units that are locked. There is no freedom of movement.

Another thing we have found is that it affects a number of other fundamental rights. Children have the right to an education and they have the right to be with their family. These units are often located a long way from home. Let us take Josh, the young lad whose case we followed and who will have given written evidence to your Committee. Josh was placed in Birmingham but his home is in Cornwall. That made it almost impossible for the family to be a family. It took a lot of hard work by Josh’s dad to get him out.

When you go into the units, you can see that there is no education system that is fit for purpose. This is about the lack of the right to education and the lack of family life. At root, this is a really expensive use of resources, which means poor outcomes for children, and we have very little evidence that their lives are improved by the sort of scenario in which they are placed.

Mr Simon Duffy: With respect, Chair, you say that there is a choice in putting people in these places, but do people need to be there? The verb is almost the problem, as is the idea of a placement. I worked with some of the families whose children were in Winterbourne View. The pattern that Christine has described is entirely accurate, but the initial problem is often just a small one within the family. It may be illness such as a family member who has cancer. It may be a little crisis to which the system responds in effect with a placement—residential respite or a group home. Then the child reacts in the way Christine has described. They are angry and ask why they have lost contact with their family member, be it their

Oral evidence: The detention of young people with learning disabilities and autism 3

mother, father or sister. They say, “Why am I in this dreadful place?” There is then an escalating problem.

It is not that we need to commission better placements; rather, we need to start working with families right at the beginning of the process and putting resources and skills alongside those families so that they can design the solutions that make sense for them and their children. We know how to do this, and the centre has many fellows who are working in the field, but that is not where the funding is going and it is not where the expertise is being supported and fostered. We have a system that is fundamentally institutional in its whole approach. As Christine has described, children kind of cascade through these institutions with increasing levels of pain and end up in ATUs.

Ms Caoilfhionn Gallagher QC: I very much agree with what Christine and Simon have said. In my work with children and young people and their families, I tend to see that swingeing cuts to local authority budgets and cuts to child and adolescent mental health budgets have resulted in something that is often seen as a last resort being reached because alternatives are not available and have not been fully explored.

The result is a profound impact on the rights of the individual children and young people who are affected, as Christine has indicated—and not only the right to liberty under Article 5 of the European convention; fundamental issues obviously arise in relation to the right to private and family life under Article 8.

Given the conditions, there are often issues with inhuman and degrading treatment. Many of you may have seen Chris Hatton’s blog over the past few days that sets out the horrifying statistics showing how children in these circumstances are much more likely to be subjected to intrusive forms of restraint, for example, than are adults in an equivalent position. There are real Article 3 issues as well.

Chair: Would you explain to us what you mean by the intrusive use of restraint?

Ms Caoilfhionn Gallagher QC: Of course, and I can provide a link to this. The academic Chris Hatton has written a very good blog over the past few days looking at the publicly available statistics. He has found that 12% of children and young people, by which he means those aged under 18—the terminology is used differently by different people—as compared with 7% of adults being detained in in-patient units, experience some form of restrictive intervention. He has taken the most recently available statistics, which are for November 2018, broken them down and found that children are five times more likely to be subject to physical prone restraint, which is a horrifying form of restraint.

Chair: What would physical prone restraint mean for the ordinary person in the street?

Oral evidence: The detention of young people with learning disabilities and autism 4

Ms Caoilfhionn Gallagher QC: It is being held face down in a restraint position. It is something that my clients have experienced and it is terrifying. It often leads to PTSD and problems later on in adulthood. His statistics are that a child is five times more likely to experience that type of restraint than an adult in the same setting, and seclusion is three times more likely.

Chair: Seclusion sounds to me like a lovely tropical island where you go to be secluded. Are we talking about solitary confinement?

Ms Caoilfhionn Gallagher QC: Yes, that is right. Those are just two examples, but it is worth looking at those statistics because you obviously look at the human rights of adults and children in a very wide range of areas.

Children should have more and better protection, because it should be recognised that, in addition to their rights under the Human Rights Act, children have very particular protections under the UN Convention on the Rights of the Child. That includes Article 37, which says that any form of detention must be a last resort, so there is an imperative to avoid a form of detention; and Article 9, which recognises that separation from family is particularly damaging for children—for under-18s. It is damaging for anyone, at any age, but it is particularly damaging for under-18s, given the evolving capacity of the child.

In that context, when we stand back and look at the statistics we see that, eight years on from Winterbourne View, although there is an overall decrease in the numbers of people with learning disabilities and autism who are detained in a form of in-patient unit, there is a reverse picture for under-18s and a sharp increase in the number of children being detained. Not only is that a fundamental human rights issue for the individual children, but it raises much wider systemic issues about our failures for that group of children.

Q14 Karen Buck MP: You have just gone into what you think are some of the factors driving the rise in the use of both restraint and solitary confinement. Can I ask the three of you just to give an impression of the factors, or maybe a single factor, that are driving that? Mr Simon Duffy: On driving the increase, austerity is a big part of it.

Chair: Is it the increase in restraint and solitary confinement that we are talking about?

Mr Simon Duffy: Yes, in a way it is, because more situations of crisis are being created, as we described earlier. It is perhaps hard to picture. In a system where problems are happening in a family and you are trying to find a solution, there is no flexibility because all the preventive services have been cut—adult social care has gone from supporting 1.8 million people to 1 million in nine years, and children’s social care is the same.

So in a sense you rely increasingly on these institutionally funded services, which can often get the NHS to fund them rather than the local

Oral evidence: The detention of young people with learning disabilities and autism 5

authority, and for children in institutional care you can get regional NHS— NHS England—to fund it. A set of incentives have been set up that mean that, in desperation from the lack of resources on the front line, people reach out for these services. Then the child, who is confused and angry, acts out in an environment that is in no way suitable for them, which is the natural response. It is a bad response, but it is what happens in this kind of environment.

Growing numbers of children are going in as the system fails on the front line, as the education system cuts hit disability education, and as the exclusions grow. These are all connected, and these children are in a sense at the end of the line of a series of failures to support people effectively in the community.

Dame Christine Lenehan: Specifically on restraint and seclusion, one of the big things is the quality of workforce. We looked at a case just before Christmas, which the “Today” programme had picked up, of a child in a children’s home rather than an ATU. This child had autism and learning difficulties, and the parents were very angry with the placement, and rightly so. This was a service that advertised itself as appropriate for children with autism and learning difficulties: “We have a specific skill set in this”. This young man lost four stone in four months and ended up in hospital with a broken collarbone. That is why someone with an autism speciality went in.

Even on a poorly recorded restraint book—they have to record—this young man had had 200 episodes of restraint within that time. What came out was that the staff just did not understand autism, so people talked to them about basic communication systems for those with autism—the PEC system, symbol systems; really well-known, basic ways to help young people with autism to communicate. We know that fundamentally, with autism, the reaction to violence is often insecurity, and people were reacting by using prone restraint.

Training the workforce is key, but culture is also really important. Once you get units seeing these children as not children but a problem to be solved, you get an increase in the use of restraint.

Karen Buck MP: I appreciate what you are saying, but why has that got worse?

Dame Christine Lenehan: Some of it is to do with a lack of trained staff. We have a huge staff turnover in these units, which is part of the problem. We do not have effective training courses, and, quite frankly, the inspectorate and others now accept standards that are unacceptable.

There is a need for a culture change that is about the turnover of staff and the challenge that children and young people face when they go in. I looked at residential schools that were built for and occupied by a group of children. That group of children changed to children with more complex behavioural needs, but the training of staff and the understanding of why children behave the way they do was not there. While our population of

Oral evidence: The detention of young people with learning disabilities and autism 6

children has changed, our workforce has not changed, we have cut down on what is possible, and there is the culture stuff. It has fundamentally got worse.

The other thing is that there has been a change in our in-patient population. The numbers have gone up. We started off looking at boys with severe autism and challenging behaviour, but now three-quarters of our girls in in-patient units have autism. They require a different approach and a different way of communicating, and that skill set is missing.

Chair: And if they do not have that skill set, the children end up on the floor being held down.

Dame Christine Lenehan: Yes, if you cannot interpret the behaviour of autism and you do not know where it comes from. If I am an autistic child and I am prone-restrained, I have no idea why you are doing this to me, what I have done or why this is going on. Unless you have a fundamental understanding of what autism does to people and how you communicate and react to it, that will spiral.

Ms Caoilfhionn Gallagher QC: I have a few supplementary points to make. I very much agree with what Christine just said. The issue about the population is critical. The most recent statistics show that 62% of children and young people held in in-patient units are girls, which is quite different from the adult population. I did a recent inquest into the death of a young woman with autism who had had atrociously poor care, and I am very happy to provide you with the findings of the jury and the prevention of future death reports in that case, which may be helpful. There were fundamental problems with understanding how autism presents in girls and with understanding behavioural triggers. This is a real issue: the population and the mismatch between the population and lack of training.

I will pick up on two other factors supplementary to what Simon and Christine have said. First, with many of the families I work with there is a terror about complaining, even when they see bruises, because they are very worried that it may make the situation even worse, and in circumstances where they feel quite powerless. Quite often, I and colleagues of mine who work on these cases find that the parents feel totally at a loss and are worried that if they do something that is perceived as aggressive it will make it worse, particularly when it is a closed environment and they feel that it may be taken out on their child. So the oversight mechanisms are a real issue. There are also issues with the CQC and how effectively, proactively and quickly it responds to indicators of concern.

The second factor is the quality of the workforce. In another very recent inquest that I did, concerns were raised about fundamental cuts to services, because it was a private provider and essentially a business. Again, I can provide you with the material—the findings of a jury, which

Oral evidence: The detention of young people with learning disabilities and autism 7

are public—and although the context is slightly different the lessons apply here.

Very experienced staff had been removed by a private provider from a care facility that was providing services for young women, including my client’s daughter, a young woman with autism among other things. They were replaced with very junior, very young staff, because of the position with the minimum wage, who had had minimal training. At most, they had had training for an hour or an hour and a half, and were then presented with this challenging population. The result in that particular case was that my client’s daughter took her own life in circumstances where there was a known risk to her and she simply was not safe.

There is a growing body of evidence. It is anecdotal, because I see it in individual cases so I cannot say whether it is a definite trend, but certainly from my cases I see the same points that Christine has been making about the quality of the workforce and the mismatch between training and the population.

Q15 Karen Buck MP: Very quickly, can I ask each of you what your view is of care and treatment reviews? We had evidence that they were not particularly effective. Is there a way of making them work more effectively, such as by putting them on a statutory footing? Dame Christine Lenehan: We have been working quite hard with children on care, education and treatment reviews. It is important that education is part of it, because we deny a fundamental part of children’s lives if we do not have education. We need to look at how they link with education and health and care plans. At the moment, we have this kind of mad-fool standoff, which means that social care does not go to CETRs and health staff will not go to EHC plans because both see them as not important enough, which is total madness.

We know that if you have a good CETR in the community before admission, or pre the possibility of admission, 80% of children who go through that process do not end up being admitted. I have pushed NHS England for three years now to provide me with the evidence of why. I want to understand what in that process is preventing admission. Are we just kicking it down the road? Are we coming up with positive solutions?

I told them again two weeks ago that this is now the most critical information that we need. We need to understand. We have a mad data collection issue in NHS England which means that they collate some CETRs and not others. Pre-admission reviews are collected, community reviews are not. There are some really odd ways of collecting data. Good CETRs with shared accountability across agencies have to be the way forward, but they have to come in at the right time and they have to have the right people who can commit resources around the table. When they do, they work.

Ms Caoilfhionn Gallagher QC: CETRs when done well are obviously a step in the right direction. It is obviously good to have independent eyes

Oral evidence: The detention of young people with learning disabilities and autism 8

reviewing care. Often, it is a form of assessment that simply has not happened before. However, it is only as good as the available services or the available placement when a placement is necessary. A lot of this ultimately comes back to Simon’s point about cuts and what is available. That is at the heart of a lot of the evidence that I think the three of us are giving.

Mr Simon Duffy: I am not sure about the statutory footing question, but speaking more as a practitioner I have tended to experience these formal processes as rather irrelevant to the task of getting somebody out of an institution. That task—the fundamental challenge of figuring out what is going on and helping to design some decent support for them in the community—is really practical. It requires some of the things that Christine has talked about: the ability to understand and to develop communication plans.

Usually, the family is the critical piece—the person, a family. The family knows more than all the professionals put together, but usually it is excluded from the process, sits on the margins of it or, as has been said, is often very fearful. The power balance in these bureaucratic processes does not lead to the solutions that people hope for and associate with them.

If that is what we are trying to do with care and treatment reviews, I am not sure that they are really the tool for the job. I want to understand how that family is empowered and where the resources are to enable that person to be supported. With much less cost than is wasted in the ATU, they could usually be better supported in the community. Where is the support provider who could work with the family to design the support? The commissioning processes have usually ruled them out of the room. The people who have to do the job of providing the support are not even allowed to sit at the table because there is a conflict of interest.

So you get these other things that are to do with the whole culture of social care—the strange marketisation—and that lead to bad thinking around the person. That is what we need to tackle.

Q16 Lord Woolf: What would you say about the Care Quality Commission’s contribution? Mr Simon Duffy: I could start with perhaps the most extreme position.

Lord Woolf: I should have said to you that I have a granddaughter who is autistic, so I am particularly interested.

Mr Simon Duffy: The Centre for Welfare Reform has published a lot of material that is very critical of the CQC generally, so I start with a lot of scepticism. If you ask what the empirical basis is for a lot of the CQC’s own regulations and behaviour, you see that there is none. It is a strange situation in which you respond to every challenge about quality with more bureaucracy, when we know that there is no basis for that.

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I met the families whose children had been at Winterbourne View. It was not the CQC that had led to that, it was “Panorama”. Those families said that Winterbourne View had been the least bad place where their children had been. They were not saying that it was good, they were saying that it was the least bad, and CQC did nothing about the others either.

I am not convinced that that is the right way to think about quality. By saying, “We need to regularise this more through bureaucratic processes”, you are in danger of normalising what should be unacceptable. In a way, that is what the system does. It starts to say, “Well, acceptable grounds for seclusion look like this. These are the procedures that we would accept for prone restraint”. That is not the right approach. We should be saying that this is utterly unacceptable, that people should not be forced to live like this and that we need to design alternative arrangements.

CQC cannot do anything about this. I, is not in its nature to be able to do that. It is not the solution, it is not even the problem, it is just a kind of sideshow. Sorry, that is a little harsh, but I feel that it is true.

Chair: Does anybody have any other views?

Dame Christine Lenehan: When I have looked at services and then gone back to inspectorates, whether Ofsted or CQQ, and said, “I don’t understand how you came to your judgment. Please can you explain it to me”, they have said, “Go and look at an inspection and see what it is like”. So I did. What struck me was that, the way the inspection process is set up, people inspect paperwork and processes; they do not inspect the lives of the people using services, they do not inspect context. “Do you have a book that says how often you have restrained people? Oh, yes, you have a book. Tick”.

It is that approach rather than, as you were saying, Simon, something about lives. In a couple of services, I did not feel that any inspectors were asking the right question: “Is this the way children should live their lives? Is this quality good enough? What do we think about it?”

Beyond that, there is really no understanding of market management. If you start to look at the private providers, who have been taking over big time in this area, you see that understanding what a market looks like and our national vision for what good looks like for these children are completely lacking. That is one of the real challenges. Sorry, my view is a bit harsh as well.

Ms Caoilfhionn Gallagher QC: Perhaps I may follow up briefly on the point about CQC and Ofsted which Christine just made.

In cases where there is a serious case review, for example where a child has died or there has been a very serious incident in relation to them, the local authority’s children’s services when it is Ofsted or the particular placement when it is the CQC will quite often have had glowing or fairly positive reports up to the point of crisis. That concerns me. I have also

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seen some very high-quality CQC inspections. One concern I have is that, even when very serious problems are identified to the CQC, including with safety, there is a time lag before decisions are made and actions are taken.

Although this is in a slightly different context, the recent inquest into the death of a young lady called Sophie Bennett is worth looking at on this point. The CQC had produced an incredibly damning report that resulted in most patients being moved out of the placement, with a small number of patients remaining in, one of whom ended up losing her life in an entirely foreseeable accident and in circumstances where the CQC had identified failings months previously.

When the CQC identifies serious failings that relate to safety and fundamental breaches of human rights, what happens next? That is an area where this Committee could make some nuts and bolts proposals. I could provide you with some documentation on that.

Q17 Scott Mann MP: Simon, you mentioned that you believe that parents are not involved enough. I am relatively new to this Committee, but I found it odd that parents were not more involved in this process. What do you think needs to change to ensure that parents are more involved? Mr Simon Duffy: There are some practical and cultural things. It is a long-standing problem. I started working in this field in London in 1990. Coming with no professional training, what shocked me most was that the service system was set up in suspicion of parents. This legacy was associated with the institutions themselves.

Then there are the factors that have been touched on. When, out of love, parents express frustration or anger, the system defends itself from that by “othering” the parent, basically—“The parent is a problem parent. Oh, they do think that, but they’ve failed their child, haven’t they, because why are they here?” You get that whole narrative, which is not an easy thing to solve at all. In a sense you have to empower parents both collectively and in individual situations.

A practical point to make is that the Care Act 2014 and how children’s services are developing are just not working at all well. Personalisation was meant to empower families, and there was meant to be clear guidance: “This is the resource you have available because your son or daughter has these needs. We’ll help you to figure out the solution that you need”. None of that happens. You may, if you are lucky, be given a direct payment but no support to manage it. You then have to improvise some support. Some families do a really great job with that, but for many families it is just not a sensible arrangement.

The commissioning arrangements that were meant to kick in were called individual service funds. They were basically a way of offering a flexible resource, so that if a service provider had to be commissioned or assistance provided in some way, the family could determine that. For reasons that we could go into but it would take too long, over the past 10

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years of that personalisation policy those practical commissioning arrangements have not really been implemented at all. To my knowledge, only Dorset has made proper use of individual service funds, which enable families to get flexible support which they can guide and direct, and they can choose the provider. Without that, the families are of course very weak. The system takes control and puts the child or the adult in a place, and the service surrounds them.

In addition, we need to think about collective power. Some fantastic family groups are emerging, but they are piecing together their power in a system that does not provide any resources. It will fund independent advocacy that is not really independent, but it will not fund family advocacy. It will not create any real foundation for the family’s voice. It is striking that many other countries have developed much better foundations for families, which means that families feel a lot stronger, their voices become a lot stronger, and the system has to take them more seriously.

Dame Christine Lenehan: Good care, education and treatment reviews put parents at the centre. When the CETR process works, parents are at the centre, but when it does not, they are not.

The biggest frustration I have found for the parents of children in ATUs is that, by the time their children have landed in one, almost every parent is seen as a problem for the reasons that Simon has explained. As parents challenge the system more, the system reacts by hiding. What works best in the system is when confident professionals work with confident parents on solutions and are open, honest and transparent.

One of the recommendations that I was trying to get through two years ago and is now coming up in the long-term plan as agreed, but only in five years’ time because there is no money—so it is unicorn decision- making at the moment—is that families will have a key worker. We were seeing children going into an institutional system and their parents being given no single point of contact.

That to me is basic abuse. There should be a single point of contact so that parents understand what is going on with their child, what the treatment options are and what options are available after discharge. Parents should be able to question someone appropriately. Instead, at that level the system shuts down and says, “These people are too difficult to deal with”. People see the parents as complex, not the children, and see them as part of the problem, not the solution. When it works, of course, it is brilliant. What is missing is standing up and taking account of what is going on.

Ms Caoilfhionn Gallagher QC: I want to make three points here.

First, on the single point of contact, I often see in my cases that parents are left with an information gap—there is radio silence—so although they are supposed to be notified of key developments that have happened on

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the ground, they are not told. That, of course, undermines their ability to challenge, question and press.

Secondly, on the “difficult parent” culture, I very much agree with the points that the others have made. My client Sara Ryan, Connor Sparrowhawk’s mother, has written very powerfully about the culture of mother blame and the perception of her as being difficult. When we looked through many of the documents from the inquest, you could see that when she raised points, on which she was absolutely right, she was belittled, sullied and criticised, and she was perceived as just being a hassle who was interfering with the ability of the staff to control her son in the way they thought should be done. An extreme example of that is obviously Bethany’s case, in which Radio 4 became involved. There is an assumption that the parent is being difficult rather than the parent having their child’s best interests at heart and speaking out.

Thirdly, I am conscious that a recommendation was made in the Mental Health Act review about advocacy services expanding to include parents and carers, including informal carers. That may be worth giving a little more thought to so that there is a recognition of the role that parents and carers play in the process, because at the moment they are perceived as troublesome outsiders a lot of the time and are not valued.

Scott Mann MP: When the relationship between the provider and the parent breaks down, what options are available to the parent to complain about or raise concerns about the service? Do you think that the system we currently have in place is adequate for the complaints process?

Ms Caoilfhionn Gallagher QC: There are real problems with it. I mentioned earlier the concerns that many people have about using it. Although in theory mechanisms are available to them, they are worried that in the circumstances they will make matters worse. In many of the cases I see, people have turned to litigation as a last resort. Again, that can be difficult and time-consuming, and in a lot of cases it does not actually improve matters on the ground promptly. The mechanisms that we have available are crude, but a lot of it goes back to the cultural problem, because some of these things are very simple to solve.

Mr Simon Duffy: Practically, it is not clear to me why, in almost all cases, the family does not have clear rights to determine where the appropriate support is and to terminate support packages. That is what a good commissioning system would deliver. It is not a matter of looking on while the system determines how your child is supported. It is about you deciding, so that when you see that something is wrong you terminate it.

That would make a big difference to the power relationships and is perfectly achievable. We have achieved it in small areas, but for reasons that are largely to do with systemic failures by the Department for Health and Social Care to set appropriate guidelines for commissioning, local authorities have continued to fall back on the placement model whereby

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they take back control and the parent is left at the edges. That is an utterly solvable problem. If the Care Act 2014 and the principles of supported decision-making were properly applied now, families would be in a much more powerful position.

Ms Caoilfhionn Gallagher QC: There is one thing I should have said. Sometimes—not very often—I see the rights of the child used to argue that the parent should not have any involvement. Of course, there may be situations, particularly with a capacitous child, a child who is older, where there may be a conflict between the interests of the child and the interests of the parent, but that is sometimes used as a fig leaf to explain parents having no involvement at all, and in fact when you go through the material it is quite clear that the child has given consent for their parents to be updated about developments.

As I say, it is a fig leaf and it is not right. It is important to note that there may in some circumstances be a distinction between what the parents want and what the child wants, and it is important that that is recognised, but that is all the more reason to have a more nuanced system instead of a “parents are outsiders and they are interfering” approach.

Q18 Scott Mann MP: I have one final question that I shall bundle into two. We know that injunctions or gagging orders are sometimes used to prevent parents publicly voicing their concerns about the treatment of their children. In what circumstances would those orders be sought, and are guidelines in place to ensure that they are used only when necessary and are not misused? Ms Caoilfhionn Gallagher QC: One of the problems is that it is very difficult to know how prevalent they are. Obviously we have seen the extreme example of Bethany’s case which then comes to court. There was another relatively well-known example from 2005. But apart from those there is a real open-justice issue about how often they are sought and what happens.

So I am afraid that I cannot help the Committee with how prevalent such orders are. I have checked with a number of my colleagues who are specialists in the area. We know that Bethany’s case is not an isolated one; there are other recent examples. The numbers are relatively low, but I can provide the Committee with more detail if that would be helpful.

In Bethany’s case, of course, simply because her father speaks and writes so powerfully and had spoken out, there was support from specialist lawyers who were willing to provide pro bono assistance as well as support from media organisations, so the case was fought. However, in many cases this happens much more quietly, and people are silenced in ways that never see the light of day, so we do not know.

On guidelines, depending on the type of order that is sought, if a form of reporting restriction order or some other form of order is sought, there are not guidelines as such but there are precedents in the cases. I am

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less concerned about that, because when they get to court, as we can see in Bethany’s case, you can get the right result. I am more concerned about what happens when they do not see the light of day and it happens more informally at an earlier stage.

Q19 Chair: I think a lot of people would find it hard to work out in what circumstances it could be right to stop a parent speaking out. If you are talking about injunctions for parents who are physically assaulting staff, everybody would understand that, but we are talking about parents voicing concerns. Can you explain, from the other point of view, where it would be right, in the public interest and in the child’s interest for an injunction to be taken out? Also, bearing in mind the paucity of evidence, the fact that the person seeking the injunction is obviously not likely to broadcast it and the person at the other end of the injunction is not able to speak about it, who should be gathering the information so that we can work out how prevalent it is? Also, argue for an injunction against a parent.

Ms Caoilfhionn Gallagher QC: I will not do that, because, wearing one of my other hats, I am an open justice specialist.

Chair: So you do not think there is ever a justification for it.

Ms Caoilfhionn Gallagher QC: I am not saying that. Of course, there may be some quite extreme circumstances where it could be justified, depending on the facts of the particular case.

Chair: Give us a “for example”, because some of us will find this quite difficult, bearing in mind freedom of speech and parents’ rights. If somebody says something that is not true, it is not usually responded to in an injunction financed by a public authority. Just explain why these are there.

Ms Caoilfhionn Gallagher QC: Ordinarily, I do not mind being a devil’s advocate, but I am afraid I am struggling, particularly in relation to a blanket-type gag order. Of course there may be circumstances where you weigh the very powerful Article 10 public interest in freedom of expression in this context—this not only relates to the individual parents’ rights; there is an often a very powerful public interest, as there was in Bethany’s case, to do with the wider cohort of children in these circumstances—against the Article 8 rights of the child.

I can certainly see circumstances where some particular information could be overly intrusive to provide, such as information that is particularly intimate about the child. But when it comes to speaking out about the fact of detention or the types of conditions to which the child is subjected, I struggle to see a circumstance in which a blanket gagging order is likely to be Human Rights Act-compliant.

Chair: Does anyone else want to give us examples of where, in your view, an injunction would be justifiable to stop a parent speaking out?

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Mr Simon Duffy: Again, I cannot be very helpful. The memory that comes back to me is that of one of the first families I hoped to get out of an institution. It took ages to get the right to speak to the family because it was so stigmatised by the system. Eventually, when we got to meet the family, we could see the possibility of a solution. We went for our first meeting at the institution, which had a meeting room that was about the size of the space here. When the parents and I arrived at this meeting, all the professionals were already filling all the seats in the room, and they left no space for the family.

That visual metaphor is my constant experience. I just do not have this experience of families trying to exploit the system. There is a tiny percentage of abusive families, which is a real problem in itself, but they are not the ones running around doing this. We have a system in which families are systematically discriminated against and their voice is not being heard, so it is really difficult to get into the head of somebody who wants to impose a gagging order, I am afraid.

Ms Caoilfhionn Gallagher QC: I am afraid that I am a lawyer, and I struggle to see when that legal mechanism should be used.

Chair: Just to pick up on what you said, have I got this right? Although not in every case, when things start to go wrong, parents are then failed by the system; they are marginalised and become stigmatised and fearful, and they are then resisted and are powerless. Is that it?

Mr Simon Duffy: Yes.

Dame Christine Lenehan: Yes. That is a good summary.

Chair: Then, on the other side, you are saying that the remedy for this is that they have to be part of a decision-making process, but you are describing something that is very binary: the parents have all the responsibility for the child, and then suddenly we take over, make all the decisions and shut them out. So we need to be not so binary on this.

Mr Simon Duffy: Yes. It is almost doubly binary, because just in getting to the nitty-gritty of social care provision, if a family says, “Okay, we’ll try to figure it out”, the mechanism of a direct payment is used, which transfers some financial resource to the family but does so in a way that also loads all the responsibility on it and does not provide it with support.

We do not equip ourselves to deal with all the subtlety that you need to provide good support, particularly for the folk who are most complex, whose behaviour is harder to read, and who are not coping with the world in quite the way other people are used to. We need good expert advice; you cannot just say, “Oh, just leave it”. The reason you are even in the room is because the family is calling out for help. But it is not calling out to be completely disempowered and ignored.

Chair: So basically the solution, then, is for them to be kept informed, including with a key worker for family contact, and for family groups to

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be funded. One of the things we have been amazed at is how these individuals are not only dealing with their own child’s situation, often very bravely and apprehensively, but are also working with other parents, although without any support for that.

Mr Simon Duffy: They should not just be kept informed. The default commissioning option should be that they are in control. We have systems to make that completely feasible now, without any legal changes. Better guidance from the Department of Health and Social Care and better practice in local authorities now could put families in the driving seat for the development of most of the support and services that they and their children receive.

Chair: Thank you very much indeed. Once again, thank you for being prepared to come to see us at a different time. Obviously, we have significant Brexit decision-making later on in the day, but we regard this as incredibly important. We did not want it to become a Brexit casualty; we wanted to hear from you and to press on with our report. We are grateful for your flexibility, for the expertise you have shown in your evidence to us, and for the work you do in this significant area. Thank you.

Oral evidence: The detention of young people with learning disabilities and autism Written evidence from Ms Ita O’Donnell (YDA0023)

As a current nurse I have come across the continued demonisation of vulnerable patients in care. You get the group culture then taking off in forms of office negativity , fear tattle and this becomes more fear and next it’s a rush job into another traumatic restraint. Words have power. They cause the dreaded thing to happen, i.e. “He’s going to kick off!” and so he does . Where as saying “All is going to be lovely and calm”. The atmosphere changes with your wish and your words and so you (the rest of the group)carry the calm in your smile and soft words and it happens! If you talk of fear , you invite the worst to happen. If you think positively and keep speaking positively then you invite in the best outcome. Speak low, get eye contact , gentle approach, gesture way to door etc. “We want to help you..” It is imperative to make managers accountable (similar to sales targets) to drastically reduce the number of restraints imposed on most vulnerable children who require care which is calm considered love to another persons child who is a member of the human race. Would they like their own child with learning difficulties and autism to be rough handled as it is so scary and intimidating for the patient and all they can do is lash back and become more aggressive if they see a gang coming to jump them. It is horrid to behold. These patients are vulnerable and highly sensitive and they end up requiring longer in patient stays, more drugs, more mess, more tears for the patient, the staff and the family. Wards need to be blessed by any ministers available and make it a big annual thing on the same date , interdenominational, interfaith and let each take a significant item of their faith to bless a building to actually achieve tops care in the aftermath of failure. So with holy water, blessed sacrament for Catholics, Hebrew Bible, Quoran, etc.. so that buildings are cleansed of generations of negative energy and staff are spiritually empowered to be very kind, speak lowly with huge dignity for patients in their care so they treat them like family . I think the first day of spring Feb 1st is a good post busy time of year and spring is a new season and the time for new life , new starts. There is an ignorance too of what is against the law. Restraint is traumatic and can be abusive. Injection sites are massive bruises, can’t sedation be oral to calm patients down first to try again and again to communicate instructions WITHOUT trauma. Solutions as I see them ! Speak lowly and kindly at all times to children and patients in our care. Have staff out of office and sit beside patients in silence acting as if they really want to be around patients in care . Gives message I like you and teaches calm. One to one. Have meditation, short walks , deep breaths so staff themselves return to ward setting calm to carry calm to those in care. I saw a massive tv documentary on difficult children with autism and learning difficulties and it concluded with such a wise logo to use (which I use with my own kids and patients) Praise The Desirable, Ignore the undesirable Therefore the kids get attention as in positive appraisal for what they do right and not for what they do wrong . This school was transformed by this logo and had huge exciting evidence. I have used it and it is a simple logo that works. This transformation of care must come from top down as restraints are a sign of poor practice, bad communication, impatience, fears snowballing,also it costs money in staffing , drugs, devastates patient and family and puts children way back and full of fears that becomes ingrained into secondary conditions. Volunteers ..get people on board to volunteer (DBS them for free) and get them arranging flowers, playing cards or just sitting reading, fluffy grannies, but get them to bring love and calm as it truly catches on heart to heart especially if the whole place is blessed. Everyone gets the idea of blessing and saying “Ahh bless you!” as I say this to you! It’s not about judging but nudging each other to try something spiritual and create silence for kids with wired nervous systems and calm music like classic fm , low light when possible , essential oils like lavender on safe electric burners all carries calm after ….the annual blessing of buildings inside and out of course! If you don’t try something new , then you get the same results. Nothing ventured, nothing gained! We all so want better tops care, so call on that divine power out to assist us via a blessing day and invite family members/volunteers to attend to bring their blessing too. Keep ..calm and carry on.

9 February 2019 Written evidence from Mr Richard Griffiths (YDA0022)

ATUs are synonymous with the Berlin wall. In that a person held cannot be released otherwise all the others will have to be released from captivity which would then result in the whole money making finger in the pie ATU system collapsing along with the whole current Conservative ideology of making money even out of suffering. There are now Government measures afoot for the hurried repackaging of ATUs in the form of dormitory block accommodation for vulnerable persons, euphemistically described as independent living accommodation. This is designed to keep the finger in the pie money in the same hands. The persons of the Government have hypocritically presented this as Transforming care. In fact transforming care is in the Care Act 2014 under S26 direct budgets and S31 direct payments. Local Authorities are responsible for meeting theses needs in this way under The Care Act 2014 but they fetter their discretion of every section of the CA2014 in every conceivable way that you wouldn't believe possible. The current Government has reduced the funding to the Local authorities making it financially uncomfortable for them to meet these Needs. So a Local Authority will seek to find ways to unload a prospective high budget vulnerable person from their responsibility to somewhere else, the NHS. The Local Authorities do this by offering the vulnerable person a temporary respite at a respite Centre. It is at these centres that vulnerable persons are inappropriately mishandled to overload and aggravate their vulnerabilities which frightens them out of control. They are then assessed as having complex needs requiring complex measures only available at an ATU. The NHS commissioning persons give vast sums of NHS money to private enterprise persons masquerading as health trusts or the like who set about farming the desperate Vulnerable persons sold to them. For those poor souls their lives are over. Our own experience was with our adult autistic son where we were on the cusp of this Treachery waiting to engulf us. I had to spend six years getting my law degree in order for my wife and I to concurrently advocate for our son, and uphold the Law and ensure that the Care Act 2014 was enforced through three upheld LGO decisions over the same six years ! Our son now has his personal budget, direct payments, his own housing association house with a lifetime tenancy for his independent living and 24 hour support in the village he grew up in with close proximity to family and friends and is at liberty to lead a life of his choosing at a fraction of the ATU figure of the finger in the pie costs.

8 February 2019 Written evidence from the Equality and Human Rights Commission (YDA0021)

About the Equality and Human Rights Commission

1. The Equality and Human Rights Commission (the Commission) is a statutory body established under the Equality Act 2006. It operates independently to encourage equality and diversity, eliminate unlawful discrimination, and protect and promote human rights. The Commission enforces equality legislation on race, age, disability, gender reassignment, marriage and civil partnership, pregnancy and maternity, religion or belief, sex, and sexual orientation. It encourages compliance with the Human Rights Act 1998 and is accredited at UN level as an ‘A status’ National Human Rights Institution in recognition of its independence, powers and performance.

Summary

2. There is evidence that the human rights of many children and young people with a learning disability and/ or autism, as protected under both domestic law and international frameworks, are being breached in Assessment and Treatment Units (ATUs). In the most extreme cases, there is evidence of preventable deaths, contrary to Article 2 of the European Convention on Human Rights (ECHR); overuse of restraint, seclusion and segregation, contrary to Article 3, ECHR; inappropriate and overly restrictive use of detention, contrary to Article 5, ECHR; breaches of the right to a private and family life, contrary to Article 8; and, the right not to be discriminated against in the enjoyment of Convention rights (Article 14, ECHR). There are also very likely to be breaches of the Equality Act 2010, including failures to make reasonable adjustments in respect of disability.1

3. Urgent, concerted action is needed in order to avoid and remedy breaches of these young people’s rights and to develop a system founded on dignity and rights. The current evidence suggests that the Transforming Care programme (TC) is not effective.

4. The UK Government should either improve implementation of TC2 or produce a new overarching strategy and action plan which should be sufficiently funded to ensure that adequate services are available in the community in less restrictive environments. People must be provided with the right support at the right time to live the life that they choose in a 1 Other rights which may also be breached include rights under the UN Convention on the Rights of the Child (UNCRC) and the UN Convention on the Rights of the Persons with Disabilities (UNCRPD). For more information on human rights and the Equality Act, please see Annex A, below. 2 You can read about the Transforming Care Programme here setting of their choice and steps must be taken to revise the detention criteria under the Mental Health Act 1983 to address the disproportionate detention of people with learning disabilities and autism.

5. Finally, as set out more fully in our response to Question 4 below, we recommend a number of further steps which should be taken to better protect rights, including by reducing the use of restraint in ATUs, improving the ability of people in ATUs to understand and therefore exercise their rights, strengthening the role of the Mental Health Tribunals and improving access to Independent Mental Health Advocates.

Question 1 – Is Transforming Care (TC) effective?

5. We note that there continues to be a lack of suitable community- based provision for many people with a learning disability and/or autism, who are in many cases entering institutional care settings and staying there for longer than other patients due to the absence of appropriate support in less restrictive settings.3 This is often because local systems are not working effectively together,4 with different funding streams and policy aims that do not always align.5 We therefore consider that TC has not been as effective as it needed to be.

Question 2 – What needs to happen to improve the situation?

6. We recommend that the UK Government should either review and update TC or develop a comprehensive new strategy and action plan with appropriate funding to develop a coordinated programme of services to support the needs of people with learning disabilities and/or autism before they reach crises, with care pathways starting in childhood through transition to adult life.6

7. We are pleased to see relevant commitments in NHS England’s new Long Term Plan including stronger requirements on local areas to coordinate community-based support.7

8. The Commission is concerned, however, that money allocated for mental health services is not always consistently used for that purpose.8 The UK Government should ensure that there are sufficiently funded, appropriate and high quality mental health services to meet the needs of

3 EHRC submission to the Independent Mental Health Act Review (November, 2018). Available here. 4 Council for Disabled Children (2017), ‘These are our children: A review by Dame Christine Lenehan. Director, Council for Disabled Children’. Available here [accessed 31 Jan 2019]. 5 ibid; See also Brown, M. James, E. and Hatton, C (2017) ‘A Trade in People: The inpatient healthcare economy for people with learning disabilities and/or Autism Spectrum Disorder’, Lancaster: Centre for Disability Research. Available here [accessed: 5 February 2019]. 6 EHRC submission to the Independent Mental Health Act (1983) Review. Available here. 7 The NHS England Long Term Plan, available here. 8 EHRC, ‘Is Britain Fairer ?’ (2018), available here. people of all age groups, based on a robust assessment of needs. This will increase the availability of community based mental health provision and reduce the use of involuntary treatment and admission.

9. Some people with a learning disability and/or autism may also be detained due to the detention criteria under the Mental Health Act, which penalise them for conduct which would not lead to the detention of a person who is not disabled and engaging in similar conduct. We have recommended that these criteria should be amended.9

Question 3 Are the human rights of children and young people with learning disabilities and/or autism being breached?

10. The evidence suggests that human rights are being breached. These include rights under the Human Rights Act 1998, the Equality Act 2010 and UN human rights treaties, as set out further in Annex A. By way of example, we are currently supporting the case of a young woman who has been detained long-term in an ATU against her wishes and those of her parents. We believe the conditions of her detention breach her rights under Article 3 (cruel, inhuman, degrading treatment), Article 5 (liberty and care in the least restrictive setting), Article 6 (fair hearing), Article 8 (private and family life) and Article 14 (no discrimination in the enjoyment of other convention rights). We believe she has been discriminated against for reasons which relate to her disability and that the ATU has failed to make reasonable adjustments contrary to its duties under the Equality Act 2010.10

11. Further, it is worth noting that, in the year that the UK’s record in relation to the Convention Against Torture and other cruel, inhuman or degrading treatment is being considered by the UN, we consider both the institutionalisation of children with learning disabilities and autism in psychiatric settings and the escalating use of restraint, including isolation, on people in ATUs as potential breaches of the UK obligations under the Convention against torture and other cruel, inhuman or degrading treatment.

12. There have been preventable deaths (breaches of Article 2, the right to life) in ATUs in a number of high profile cases.11 The most recent LeDeR report provides ongoing evidence of the prevalence of current problems across care settings.12 This includes general issues around staff

9 The EHRC’s recommendations for the Mental Health Act Review are available here. 10 See Annex A for more information on the requirement to provide reasonable adjustments. 11 Southern Health NHS Trust accepted it was responsible for the death of two patients at a short-term assessment and treatment unit in contravention of ECHR Article 2. Southern The 2018 judgment of the case is Available here [accessed: 31 January 2019] 12 The Learning Disabilities Mortality Review Annual Report 2017 (published May 2018) and available here provides the latest account of preventable deaths and urgent need for more rigorous identification and learning from preventable deaths, including staff training. awareness and understanding of learning disability and/or autism, and local care systems not working effectively together.

Question 4. What needs to be done to better protect rights?

13. The Commission is concerned about the erosion of services and support to enable disabled people to live independently and where they choose. The UNCRPD Committee has recommended that an enforceable right to live independently in the community is incorporated into UK law.13

14. We welcome the Government’s recent decision to commission the Care Quality Commission to conduct a review into the inappropriate use of restraint, prolonged seclusion and long-term segregation of people with learning disabilities and/or autism in ATUs.14 We hope that it results in renewed efforts to embed systems and practices which respect and protect the rights and dignity of all children and young people.

15. We expects that the Mental Health Unit (Use of Force) Act 2018 will help to drive reductions in the use of restraint, ensuring staff receive appropriate training, patients are provided with information on their rights and improvements in monitoring and data collection.15 The recommendation of the MHA Review to improve the social and therapeutic environment of wards is also important and CQC will need to consider how to regulate this.16

16. There needs to be a statutory duty to ensure that everyone detained under the MHA is provided with standardised information on their rights in a format that they can understand (a ‘standardised notification of rights’). The Commission is currently developing new rights based materials, which will incorporate rights and duties under the Equality Act 2010 and the Human Rights Act 1998.

17. Many of the recommendations made in the MHA Review will help to improve rights and redress17. For example, the recommendations on improving access to complaints, access to second opinion doctors and to the Mental Health Tribunal (MHT) should all help to drive greater scrutiny of individual decisions.18 The recommendation for the MHT to report breaches of human rights to CQC is critically important.19 We would add that this should include breaches of the Equality Act 2010.

13 UN Committee on the Rights of Persons with Disabilities (2017), ‘Concluding Observations on the Initial Report of the United Kingdom of Great Britain and Northern Ireland’, paras 44- 45, available at: https://tbinternet.ohchr.org/_layouts/treatybodyexternal/Download.aspx?symbolno=CRPD%2 fC%2fGBR%2fCO%2f1&Lang=en 14 The full transcript of the Minister for Care, Caroline Dinenage’s response to a Parliamentary Question can be found on Hansard here. 15 Mental Health Units (Use of Force) Act 2018 (‘Seni’s Law’) [available here] 16 The final report and recommendations of the Independent Mental Health Act Review are available here 17 Ibid. 18 Ibid. 18. Independent Mental Health Advocates (IMHAs) have an important role in providing people with information on their rights and supporting them to make and challenge decisions around their treatment and detention. We welcome the MHA Review’s recommendations to improve the quality of IMHA services and to extend the points at which people can access their support and produce advance choice plans.20 This must include specialist services for people with a learning disability and/or autism and, where appropriate, their families and carers. As far as possible, people who lack capacity must be supported to make decisions.

19. More broadly, the MHA Review included recommendations to commission research into how to tackle bias within clinical decision- making and into what works in terms of keeping people out of inpatient settings.21 If these recommendations are taken forward, we recommend that they should include the experience of people with learning disability and/or autism.

20. The MHA Review also made important recommendations to improve data across the system, including data on people with learning disabilities and/or autism who are detained under the MHA.22 As the MHA Review noted, improved data will support greater transparency and accountability.23

21. The MHA Review rightly identifies that the Public Sector Equality Duty (PSED) is an important lever for tackling inequality and improving the services that people receive.24 The Commission agrees with this position, but we are also proposing a new approach to the PSED to ensure it is used more effectively by public services, regulators and Government departments. We believe the specific duties regulations should be changed to ensure public bodies are required to set specific objectives to focus on the most significant inequalities for people affected by their policies and practices, as identified in the Commission’s Is Britain fairer? reports, and drawing on other relevant evidence where appropriate.

22. Sector specific priorities under the PSED would be set by Government Departments, inspectorates and regulators or other agencies with oversight responsibilities, who should have an explicit role in monitoring public bodies’ performance against their equality objectives. This would help concentrate efforts on making progress and align equality with other expectations around standards and performance. For example, the Department for Health and Social Care might set targets around reducing the numbers of children and young people in ATUs and reducing

19 Ibid. 20 Ibid. 21 Ibid. 22 The final report and recommendations of the Independent MHA Review are available here 23 ibid. 24 ibid. the disproportionate use of restraint against people sharing certain protected characteristics.

23. Finally, it is critical that the health and social care system routinely identifies, investigates and learns from the preventable deaths and serious patient safety incidents of people within its care. This must include people detained in psychiatric hospitals.25 To comply with Article 2 and 3 requirements, this needs to be undertaken independently. The new Health Service Investigation Board does not currently have the responsibility or the capacity to conduct independent investigations of all patient safety incidents that lead to serious harm and death in psychiatric hospitals. The Commission is concerned that this may breach the requirements of Article 2 and 3 around independent investigations and prevent effective system- wide learning.26

8 February 2019

ANNEX A – The Legal Framework

Domestic human rights and equality law

1. Through its incorporation of the European Convention on Human Rights, the Human Rights Act 1998 requires that the following rights must be complied with in the operation of public services (including services delivered by a private body with public funding):

a. the right to life (Article 2), which requires the State and public bodies to protect life; act on positive obligations to protect life, for example where a public authority is aware of a real or imminent threat to someone's life or where the person is under the care of a public authority; and in particular circumstances carry out official investigations into deaths, especially deaths in State institutions or police custody.

b. the prohibition of torture, inhuman or degrading treatment (Article 3), which requires the State and public bodies to refrain from the most intrusive and risky forms of control and treatment used in care and treatment settings, such as use of physical restraint and medication without informed consent; refrain from subjecting anyone to torture, treatment or punishment that is inhuman or degrading; act on obligations to prevent, and protect those at risk against this type of treatment; and investigate allegations of torture and inhuman or degrading treatment.

c. the right to liberty (Article 5), which requires the State and public bodies to ensure there is a clear procedure prescribed by law before authorising

25 EHRC (2016), ‘Preventing deaths in detention of adults with mental health conditions’. Available here. 26 EHRC Submission to the Draft Health Service Safety Investigations Bill Committee (May, 2018). Available here. a deprivation of liberty (and permits a person to be lawfully detained if they are of "unsound mind"); ensure the deprivation of liberty is necessary and proportionate; provide for a speedy determination of the lawfulness of the detention by a court and to compensation in the event of unlawful detention; and ensure there is a procedure for regular review of the necessity for the detention.

d. the right to respect for a private and family life (Article 8), which requires the State and public bodies to protect the right to personal autonomy, dignity, physical and psychological integrity; and ensure that any restrictions on these rights are limited to occasions where they can be legally justified. Acts undertaken in relation to the care and treatment of a person who lacks capacity to consent will almost invariably interfere with these rights sufficiently to engage Article 8, even if the acts are considered to be in the individual’s best interests.

e. the right not to be discriminated against in the enjoyment of ECHR rights (Article 14).

2. The Equality Act 2010 protects people with protected characteristics (age, disability, race, sex etc.) against direct and indirect discrimination, failure to make reasonable adjustments for disabled people, discrimination arising as a consequence of disability, harassment and victimisation.27 It also requires government and public bodies (including NHS commissioners in England, service planners in Wales, and public services provided by private providers) to have due regard to the need to eliminate discrimination, to promote equality of opportunity for people with protected characteristics and to foster good relations between people who share a protected characteristic and those who do not.28 Where adverse impact for people sharing a particular protected characteristic(s) is detected, having considered these three aims, public bodies need to consider whether there are ways they could reasonably mitigate that impact.

International human rights framework

3. The UK is also a signatory to a number of international human rights treaties which set out rights which are at risk of being breached when children with learning disabilities and/or autism are detained in ATUs. With the exception of the UN Convention on the Rights of the Child in Wales,29 the treaties have not been incorporated into domestic law, so they are not directly enforceable in UK courts, but they represent legally binding obligations in international law.

4. Under the International Covenant on Economic, Social and Cultural Rights (ICESCR),30 the UK State is expected to recognise everyone’s

27 For more information, please see here. 28 This referred to as the Public Sector Equality Duty. For more information please see here. 29 For more information, please see here. right to the enjoyment of the highest attainable standard of physical and mental health and create conditions to ensure medical services provide for this (ICESCR Article12). Paragraph 8 of General Comment 14 on ICESCR31 states that the right to health includes “the right to control one’s health and body (…) and the right to be free from interference, such as the right to be free from torture, non-consensual medical treatment and experimentation”.

5. In 2017, the UK Government joined other States in a further articulation of its commitment to ensuring the right to health for people with mental health conditions. As a signatory to the UN Resolution on Mental Health and Human Rights,32 the UK Government recognised the need to invest in community-based, people-centred services; to tackle over-medicalisation and inappropriate treatments; and to respect the autonomy, will and preferences of all persons.

6. Under the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD),33 the UK State is expected to: involve service user organisations in the development and running of services (Article 4(3)) and provide for peer support (Article 26); ensure disabled people are equally entitled as non-disabled people to all legal protections (Article 5); provide support to people who are disabled to ensure they can exercise their legal capacity (Article 12); ensure that the existence of a disability shall in no case justify a deprivation of liberty (Article 14); secure the right for disabled people to live independently (Article 19); and secure the highest attainable standard of health (Article 25).

7. Article 19 of the UNCRPD contains a range of particularly relevant rights in this context, as well as principles which should inform and guide any strategy in this area. Article 19 requires that States Parties recognise ‘the equal right of all persons with disabilities to live in the community, with choices equal to others’. And requires States Parties to take measures to ensure ‘full inclusion and participation in the community’, including by ensuring that disabled people: (a) have rights equal to others to choose where and with whom they live and are ‘not obliged to live in a particular living arrangement’; (b) can access a range of in-home, residential and other community support services’ including personal assistance if needed to ensure inclusion and prevent isolation; and (c) can access ‘services and facilities for the general population’ on an equal basis to others, with such services being responsive to disabled people’s needs.

8. The UN Committee on the Rights of Persons with Disabilities recently adopted a General Comment that sets out the Committee’s authoritative

30 For more information, please see here. 31 UN Committee on Economic, Social and Cultural Rights, General Comment 14 – Right to the highest attainable standard of health (2000). Available here: 32 A/HRC/36/L.25. Please see here. 33 For further information, please see here. interpretation of this right, including a detailed analysis of States Parties obligations. [ref: CRPD (2017), ‘General comment No. 5 on living independently and being included in the community’, available at: https://tbinternet.ohchr.org/_layouts/treatybodyexternal/Download.aspx? symbolno=CRPD/C/GC/5&Lang=en

9. Under the United Nations Convention on the Rights of the Child (UNCRC),34 the UK State is expected to: respect and ensure every child can enjoy all UNCRC rights without discrimination (Article 2); ensure that the best interests of a child must be the primary consideration of all actions concerning children (Article 3); ensure that a 'mentally disabled child' should enjoy a full and decent life, in conditions which ensure dignity, promote self-reliance and facilitate the child's active participation in the community (Article 23); and recognise the right of a child who has been placed by the competent authorities for the purposes of care or health treatment to a periodic review (Article 25 CRC).

10. Under the United Nations Convention for the Elimination of All Forms of Racial Discrimination (UNCERD),35 the UK State is expected to eliminate racial discrimination and, when necessary, take steps to ensure the adequate development and protection of certain racial groups or individuals belonging to them, for the purpose of guaranteeing them the full enjoyment of their human rights (Art 2).

11. Under the United Nations Convention Against Torture (CAT),36 the UK State is expected to ensure that any person who alleges they have been subjected to cruel, inhuman or degrading treatment has the right to complain to, and to have their case promptly and impartially examined by, its competent authorities (Article 13); and ensure victims of cruel, inhuman or degrading treatment are fairly compensated, including the means for as full rehabilitation as possible (Article 14).

12. Under the United Nations Convention on the Elimination of All Forms of Discrimination Against Women (CEDAW),37 the UK State is expected to take all appropriate measures to eliminate discrimination against women in the field of health care in order to ensure, on a basis of equality of men and women, access to health care service (Article 12).

34 For further information, please see here. 35 For further information, please see here. 36 For further information, please see here. 37 For further information, please see here. Written evidence from Dr Nell Munro, University of Nottingham (YDA0020)

I write in response to two questions raised by the Committee in its recent call for evidence on the detention of children and young people with learning disabilities and autism in hospitals. I am academic specialising in the law concerning adult social care, mental health and housing. My background has been in autism services and most recently I have worked on a project with Nottinghamshire police looking at addressing the communication and sensory needs of autistic adults entering custody. This response only considers two aspects of the Committee’s call – why the Transforming Care Programme has not reduced the numbers of patients detained in hospital and specific policy interventions which might increase the effectiveness of the programme in the future. I consider it self-evident that the long-term detention of adults, disabled or otherwise, outside the community with limited access to family and friends and subject to forced treatment is a violation of Articles 3, 5, 6 and 8 of the European Convention of Human Rights and have not considered ir necessary to address those questions. Has the Transforming Care Programme been successful? There is a widespread professional and academic consensus that the long history of reducing the number of children and young people detained in hospital initiated after the Flynn Inquiry into Winterbourne View has been demonstrably unsuccessful. As a law academic I would attribute this largely to structural changes to the commissioning of health, social care and education services which have been adopted in parallel to the commitment to Transforming Care adopted by the Department of Health in 2015. At that time the Care Act which transformed the assessment and funding of adult social care was yet to come into force, specialist commissioning arrangements for adult mental health services were still being rolled out across England and Wales and Education and Health Care Plans which replaced Statements of Special Educational Needs for young people under 18 still in full time education or training had not yet come into effect. For young people with very complex needs transitioning from child to adult services it was the least auspicious time possible to deliver better coordinated local social and healthcare services. Once coupled with reductions in local authority funding and changes to personal benefits it is not surprising that many young people with learning disabilities, autism and additional mental health needs who need early help struggle to access effective local support and are, instead, shunted sideways into extremely expensive out-of-area placements. It is, instead, surprising that the numbers are as low as they are. If it has not been successful, what needs to be done to ensure the numbers of people detained in hospital are reduced more rapidly? Since children and young people with learning disabilities, autism and additional mental health needs will continue to need specialist support services the most vital change that needs to take place is increased provision of specialist mental health and behavioural support services in the community. It is notable that research by the Mental Health in Autism Group here at Nottingham supports this finding. Adults with autism report that their mental health concerns are not taken seriously by mainstream mental health services.1 There is a strong association between increased suicidality and depression in adults with autism. Current Joint Commissioning Guidance on Transition2 pays scant attention to autism, suggesting that reduced out-of-area placements are a desirable outcome but not making the connection between service models which deliver mental health care for this age group and population and reducing the risk of out-of-are placements. The role of specialist community services in reducing out-of-area placements has not been consistently studied, partly because they are not well defined and are not delivered consistently across the country. Research needs to be undertaken urgently into the effectiveness of delivering autism-specialist mental health services for young people aged 16-18. The picture is worse for adults over 18. The Commissioning Guidance for community-based specialist mental health services3 refers to autism only twice and in both cases only to discuss the importance of making accurate diagnoses of autism. The NHS Implementation Plan for the Five Year Forward View for Mental Health4 is even more depressing. It only refers to autism when describing how the Transforming Care Programme, in reducing the usage of

1 Camm-Crosbie L. et al. (2018) ‘”People like me don’t get support”: Autistic adults’ experiences of mental health support services for mental health difficulties, self-injury and suicidality”’ Autism 1-11 2 https://www.jcpmh.info/wp-content/uploads/jcpmh-camhstransitions-guide.pdf

4. Joint Commissioning Panel for Mental Health (2013) Guidance for Commissioners of Community Specialist Mental Health Services, accessed online at https://www.jcpmh.info/wp-content/uploads/jcpmh-community-guide.pdf 08/02/2019 4 NHS England (2016) Implementation Plan for the Five Year Forward View for Mental Health, accessed online at https://www.england.nhs.uk/wp-content/ https://www.jcpmh.info/wp-content/uploads/jcpmh-community-guide.pdf/2016/07/fyfv- mh.pdf 08/02/2019 inpatient beds will release money to be spent elsewhere. It does not discuss how the continuing health needs of these patients will be met in the community. The Committee should recommend that Commissioning Guidelines should be updated to more accurately reflect what is now known about the high levels of mental health needs among adults with autism and the demand for specialist community services in meeting those needs at an early stage before the need for hospital care arises. The other barrier to implementation the Transforming Care Guidelines is the challenge of finding effective housing in the community. The current Transforming Care Guidelines on Building the Right Support identify supported living, shared ownership, private rental and home ownership as possible models for people returning to community-based living needing accommodation and personalised care and support packages.5 I have not been able to find data on what proportion of the people who have moved on from hospital care under the Transforming Care Programme have returned to the community to supported living placements (effectively tenancies with a private or social landlord with support) and what proportion have become home owners or taken on private tenancies. However, I would assume the majority of those leaving hospital enter supported living arrangements simply because this model of social tenancy is the most widely used across the social care sector and is therefore widely available and assumed to be efficient. It does, however, have a number of weaknesses. The largest being that it is essentially unregulated. Social landlords who receive top-up payments from local authorities for the delivery of additional supported housing services do not have to operate to any specified standards and are uninspected. Their tenants may have the same responsibilities to maintain the property as all tenants, in some cases they may be bare licensees. In cases where a residents mental health deteriorates and they either fail to maintain or actively damage property or threaten staff there is little or no security of tenure for the resident. When care and support packages breakdown due to external factors causing the tenant distress the landlord may have little reason to continue to support the tenancy but having to move house and the instability this causes is often a major trigger for behavioural change and distress in adults with learning disabilities, autism and mental health needs. As a trustee of a supported housing provider and as someone with links across the sector I know that there are many large and small providers delivering high quality support

5 Department of Health (2016) Building the Right Support, accessed online at https://www.england.nhs.uk/learningdisabilities/wp- content/uploads/sites/34/2015/11/building-right-home-guidance-housing.pdf 08/02/2019 with a strong will to maintain tenancies even when tenants have very high support needs. But this is largely an outcome of good will. There is no regulatory imperative to achieve this. The Committee should advise the DH to amend its guidance on Building the Right Support to take a more critical stance on supported living as an arrangement for adults with complex and enduring behavioural support needs. The guidance already notes that homeownership and the outright security of tenure it delivers may well be a more stable form of accommodation for a small proportion of people with very acute needs over the long-term. It should also work closely with the MHCLG as it develops better regulatory standards for the supported housing sector as a whole. Importantly, it should be clearer that whilst supported living is structured around the conceit that tenants are ‘ordinary’ tenants with ordinary legal responsibilities to pay rent and maintain their properties in practice their additional support needs make the balance of responsibilities owed towards them by their landlords very different. Responsible landlords should be acknowledged and those who repeatedly fail to deliver stable support over time should be penalised.

8 February 2019 Written evidence from Mrs Lisa Cookson (YDA0019)

Detention of children and young people with learning disabilities and/or autism

I am a mum of a 22 year old young man with a learning disability and autism. When he was 17 years old his anxiety around the noise of young children increased due to his significant sensory needs. One weekend when out with his care worker he heard a child scream and ran over to him and tried to attack him. He scratched his eye and the police were called as a result. He was arrested and taken to the local police station in a police car, his fingerprints were taken, his clothes and belongings handed in and he was photographed, being treated like a criminal. He was interviewed by 2 doctors who had no understanding of autism and asked very irrelevant questions. I was allowed to be with him as the appropriate adult but was taken to a cell where he was held for 12 hours. This was a completely traumatic experience for both him and myself. He was eventually released at midnight on bail conditions. I lived the next 6 months in total fear not knowing if my child would be charged for something that he had no control of and was an impulsive reaction due to his disability. On release from custody the residential setting where he had been living served notice and the only option for him was to be admitted to an ATU.

I was told that he would be admitted for a 12 week assessment period where he would access a variety of therapies to help him. In fact he ended up being there for 2 years. He was restrained, overmedicated and was not treated with respect or understanding. When he broke a table, due to not going out and being trapped in a room for days on end staff made him eat from another chair. When he went out he was medicated even though he was fine. At one point he became so anxious due to hearing the shouting and screaming of other service users who were acutely unwell that he shut himself in his bathroom and smashed the toilet. As a result he broke his finger and had to have surgery. When I complained to the manager about how the staff were treating him and having no understanding of his needs I was told that he may have to go to a more secure unit! On discharge he lived in the community for 2 and a half years but the provider could not meet his needs as he had been so traumatised from the ATU and ended up just sleeping most days.

Fortunately on 12th December 2018 he moved to a new provider in Northampton who are absolutely fantastic and he has started having a life where he walks, goes horseriding, goes to restaurants and he is the happiest he has been for a long time.

In my role as an ‘EbyE’ I have attended approximately 200 CTRs/CETRs where I hear of the restraint and seclusion of many young people with autism and/or a Learning Disability. Sometimes the environment is not conducive to them as many can’t cope with noise and they are surrounded by others with acute mental health needs. One of the main problems is that there are very few good providers out in the community and like my son, delayed discharges are often a result. For example, one CETR I went to recently. The young person had been told of the planned move and then the provider changed their minds. This person was on a Section 3 but very much ready to move and have a life but the RC wanted to keep him on the Section as otherwise he could abscond. In the CETR the RC was considering restarting some of his medication that he had come off from as his anxiety had increased dramatically as a result of this disappointment.

I am part of ‘Bringing Us Together’ and have heard many horrific stories of abuse, restraint and seclusion. I believe that most people with autism and a Learning Disability should be supported in the community in a ‘home’ that has been suited to meet their specific needs.

I feel that our children our being discriminated against due to how they present as a result of their autism and/or Learning Disability. My son has not been in education since he was 15. He did not choose to end his education. His education was ended for him when he was excluded. Would a mainstream child have endured this treatment? Because our children can’t express themselves as others can they do not have a ‘voice’. We need to ensure that everyone has a means of communicating however this may be – especially in any safeguarding investigations. I have recently facilitated a workshop at a National Safeguarding Event ‘hearing the voice of the person involved in the safeguarding process’ this is absolutely key!

8 February 2019 Written evidence from Mrs Isabelle Garnett (YDA0018)

Q 1

Transforming Care has failed. NHSE’s 10 year plan has no specific plans for its continuation. • STILL 2,400 people with autism, learning disabilities or both living in institutions. (in 2014 the figure was at 2,600) • Number of CYP LD/autism inpatients, has doubled • Growing number of CYP with autism (especially young women with autism without LD)

Why? Because the government has failed to implement Sir Bubb’s recommendations: • Up-front, ring-fenced community funding to ‘build the right support’ • Government-level accountability and scrutiny

While Simon Stevens closes NHS beds, the private sector is expanding unchecked. CYP with ASD/LD continue to reach crisis and are admitted to ATUs. Many of those discharged are readmitted because the right community support has not been built. ‘Perverse incentives’ Norman Lamb identified have not been addressed. Services are not adequately funded, operate in silos and no one is held to account.

Our son Matthew has autism, LD, OCD, ODD and extreme generalized anxiety. He has always been severely affected by his autism, but around the age of 15, his behaviour became more challenging to other people at his residential special school, to his family, and to himself. We asked professionals for help but precious little was forthcoming other than ‘if it gets too bad, dial 999’. Matthew’s behaviour became increasingly unpredictable and violent. Finally, he reached crisis point, was taken to A&E and was sectioned. He was referred to a CYP LD/Autism ATU at St Andrew’s Northampton. We were assured this this was the best place for Matthew to be assessed and receive the appropriate care and treatment. We were told that Matthew would be away from home for up to 12 weeks. But Matthew did not receive appropriate assessment, treatment or care. And he didn’t return home for 18 months. Instead Matthew was locked on a ward, often restrained, often secluded. Rarely allowed outside, in fresh air or natural daylight, and not once allowed to go home. Matthew didn’t understand why he was in hospital. He thought he was in prison. But he was guilty of no crime – only autism. Matthew was locked in a complex behaviourist system that made no reasonable adjustments for his neuro-disability. A system that he had no hope of being able to understand – let alone navigate. Matthew’s sectioning could have been prevented. Former care minister Alistair Burt commissioned a case review that found: • A crisis could have been predicted and potentially prevented’ • ‘Failure in joint working between Education, Social Care and Health’ • ‘Social care, Education and Health… lost sight of MG‘ • ‘Communication between different professionals and organisations was inadequate’ • Ultimately no individual or organisation was ‘holding the ring’ on MG or his care

And the lessons WE learnt? • Behaviour communicates unmet need, not mental health illness. • Being in hospital caused a catastrophic deterioration in all areas of Matthew’s functioning, health and wellbeing. • Being under ‘lock and key’ made Matthew vulnerable, and subject to, neglect and abuse.

Q2

1. Up-front ring-fenced funding for the right community support: • Crisis Prevention – safe spaces not medical model mini-institutions • Adequate training for the right workforce and local services • Sustainable and appropriate housing, care and support in the community – not fake supported living or medical model mini- institutions

2. Government-level accountability and scrutiny: • Services working jointly to meet the needs of the person, not the service/ business • Health, Education and Social care work take ownership and work together at ministerial level • Local authorities held to account

The progress Matthew is making now that he has the right community support is incontrovertible proof that people with autism need homes not hospitals. Within 24 hours of leaving the ATU, Matthew was out in the community. No longer contained. No longer restrained. No longer prescribed any anti-psychotic medication AT ALL. This is possible when needs are understood and the right support is given. For Matthew, this means: • life in the community • Person-centred, proactive care • Good autism understanding and practice • Positive Behaviour Support • Highly structured, predictable day • Meaningful, purposeful and motivating activities • Low arousal environment • The right medication, at the right level, for the right reasons • Open and honest communication with family. • Family viewed as part of the team.

It’s not rocket science, it just needs the right funding and the right people. It is significantly cheaper than wrong support, which doesn’t help people get better. In M’s case an eyewatering £13K a week at St Andrew’s Hospital Northampton.

Q3

Yes! Matthew lost an alarming amount of weight, pulled out his hair, and frequently ‘froze’, unable to speak or move. He was contained in a basement ward with little natural light, repeatedly restrained and secluded, with little meaningful activity structured into his day. He became progressively more paralysed by anxiety, frozen in fear. We were told the only way to help him was through anti-psychotic medication. However, Matthew didn’t want to take the tablets so he was routinely subjected a fortnightly trauma of being restrained by 5-6 adults and forcibly injected.

As the months dragged on, we had numerous meetings with various doctors but felt that our attempts to explain our son as a human being with strengths and significant needs fell on deaf ears. We knew our son to be loving, enthusiastic and keen to learn. Instead, we were told that our son was ‘callous’ and ‘belonged in a hospital, pure and simple’. We were told containment and medication should be the approach. Yet Matthew deteriorated catastrophically, and we became more and more concerned about his safety and wellbeing.

We were marginalized and powerless to protect our son – even at the most basic level. Matthew thought he was in prison, and to us, it felt like he was being punished for being autistic and having a learning disability. Rather than his behaviours being seen as communication of what he might not be coping with, or struggling to understand, Matthew was medicated and secluded. To us, it felt Matthew was being treated as a criminal, rather than a vulnerable young person severely affected by autism.

Q 4 Right to family life • Ripped from all those who knew and loved him best • Miles away from home – no possibility for daily visits (cost and distance) • Visits dependant on hospital’s convenience not on child’s need citing ‘behaviour’ when often it’s because of inadequate staffing levels • No home leave • Few visits happened out of the unit • Rare visits beyond the hospital ground • Therefore limited contact with younger sibling and wider family • Parents marginalized and powerless to protect son - we began to fear for his life.

Entrapment When any human being is fearful, they either try to run away from or fight what scares them. Sometimes they are overwhelmed by fear and they freeze. How much more must a person with autism? Matthew displayed all of these behaviours We asked the hospital for Matthew to have a discharge plan but the psychiatrist told us it was ‘optimistic to have one’. Instead, Matthew was locked in a vicious cycle where containment, mis-treatment and inappropriate care became the cause of his continued detention. Over-medication, seclusion, physical & chemical restraint The doctors said Matthew needed to take anti-psychotic medication, a medicine that is formulated for people with psychosis, a serious mental health illness. But Matthew was not mentally ill. He didn’t want the medication so he was prone restrained, face down, by up to 6 adults and forcibly injected with a high dose of anti-psychotics at least every two weeks. Matthew hasn’t taken any anti-psychotic medication since leaving ATU. Neglect & abuse He froze for long periods of time, unable to speak or move. He didn’t get out of bed. Regularly missing two meals a day, he lost an alarming amount of weight in a short space of time. The hospital did not feed him out of set mealtimes. His muscles wasted. He pulled out his hair because he was so scared and unhappy. His clothes and body were soiled because no one was helping him to look after himself. We appealed to the Managers of the hospital for Matthew to be discharged but the Responsible Clinician insisted ‘He belongs in a hospital, pure and simple’. The wrong care & treatment • The doctors making decisions about Matthew had no training or understanding of Autism • Matthew’s behaviours were not understood and no reasonable adjustments were made. • This lack of understanding resulted in mis-diagnosis, mistreatment and inappropriate care. Eg. Doctors didn’t understand Matthew’s auditory processing difficulties meant he had difficulty following instructions. Instead, insisted he had ‘conduct disorder’. Lack of education / meaningful or purposeful activity. • Previous school’s efforts to advise and be involved in M’s education ignored • Hardly went outside – no exercise • Few meaningful activities • Only 2.5 hours of educational activities per week –usually missed because drugged / depressed / secluded. Inadequately / unexplained physical harm: • Broken wrist • Bruises and burn marks • Lack of exposure to natural light (vitamin D deficiency diagnosed post- ATU)

Last word to Matthew: I used to be in a bad place, I used to have injections… But now it’s better because I do lots of nice things here. There are some nice people here. And my favourite is football man! There are lots of people I like here. We do lots of nice things. We do football. And I like Liverpool.’

8 February 2019 Written evidence from Adam Lawson (YDA0017)

Dear Human Rights Select Committee,

Thank you very much for all the effort and time that you have put in carrying out this inquiry thus far. I wish to send my views regarding what the main factors causing the deprivation of human rights to patients in Assessment and Treatment Units (ATUs) are and what the government should do to stop this as urgently as possible. I am an individual person, with a particular interest in the subject as my younger brother is severely autistic and thus would himself be in serious danger of ending up in one of these institutions once he turns 18, and thus I understand that my understanding of the law and the specific mechanisms that it creates is not as thorough as that of an organisation or a trained professional would be. I hope that what I write be of some use anyway, and of course I ultimately hope that the government, whilst listening to the views of ordinary citizens, write their new laws according to the recommendations of professionals, not myself.

My submission is laid out as follows:

1. Funding for adequate care 2. Accountability of government institutions 3. Abuse within ATUs 4. The Mental Health Act and learning disabilities 5. Further recommendations by the National Autistic Society

1) Funding for community-based care

The main problem regarding misuse of ATUs for people for whom they are not appropriate seems to me to be the lack of local authority funding to ensure adequate social care for autistic people. It is my understanding that, overall, local authority funding from central government has been cut by an average of around 33% since 2010,1 with variations amongst individual localities, and as local authorities have almost no tax-raising powers (even over council tax, the only one, as far as I know, that they can vary, they are unable to raise or lower rates on individual bands) they have had no choice but to make massive spending cuts. As long as funding is not available for adequate, community-based care for adults with autism and other learning difficulties, overworked, underpaid and undertrained social workers will continue to inappropriately refer people

1 http://www.nuffieldfoundation.org/sites/default/files/files/RR04_SUMMARY.pdf to these units in order to save their councils much-needed money. I would be very interested in seeing a legal obligation on councils to provide adequate care for these people, as the National Autistic Society recommends in its 2017 report Transforming Care: our stories, but this must also come either with more funding from central government to make this possible, or the power to raise the taxes to pay for it, for the local councils responsible. The perverse system by which local community care is paid for by the local authority but ATUs are paid for by the NHS, thereby giving councils essentially a huge financial bonus for using ATUs, also needs to be stopped.

2) Accountability of government institutions

Another huge issue seems to be the lack of accountability of social services and the NHS for the decisions they make about autistic adults. I understand that, once an autistic person without capacity reaches 18 years of age, decisions about them, as set out by the Mental Capacity Act, will be made by a ‘Best-Interest Meeting’ in which parents or carers will be represented, but in which the final decision-maker will be a social worker, unless the parent/carer successfully applies to the Court of Protection to have this changed once the ‘Best-Interest’ group be set up. Whilst I am of course aware that parents/carers do not always make appropriate decisions for their dependents either, the current decision- making process, giving over-stressed and over-worked social workers with little time to look into individual cases the final decision over the care an autistic adult will receive seems to be a huge reason that thousands of adults are still trapped in these institutions which are clearly inappropriate for them, in which they are clearly unhappy, and in which techniques that can only be described as abusive – routine use of forced restraint and drugging – are commonplace. The large majority of parents/carers want good care for their children, and I suggest that a system that gives them the final say by default, unless social services assess them to be inappropriate decision-makers or the parents/carers themselves ask for someone else to be the final decision-maker, might be worth looking into. Having read somewhat into the system in America, it seems to be the case there that parents/carers being the final decision-makers is routine, and whilst I have no particular reason to think the American system is a particular model, I suggest that we might look at the systems used in several other countries for ideas to see whether such a system would be practical and if there are clear examples of good systems that we can learn from.

3) Abuse within ATUs

Another huge problem refers to ATUs themselves; whilst the large majority of people in them should never have been sent to them, it remains a scandal in itself that conditions within them are so abusive. It seems to have been cited multiple times that a lack of appropriate training for staff in them is commonplace23, and so a legal requirement that all staff in ATUs and similar situations be trained to look after autistic adults and adults with other learning difficulties seems to be in order. It also seems staggering that there is no independent inspectorate that review standards and spot abuse in these ‘hospitals’. Again, the National Autistic Society’s Transforming Care: our stories report contains detailed recommendations on how these might be achieved. Whilst the right to privacy of patients must also be respected, I wonder too about the possibility of installing cameras within parts of these institutions to provide evidence of alleged abuse, as of course most public buildings such as schools and public hospitals already have such camera systems. Finally, if there is a basis for prosecution for those responsible for these institutions whilst alleged abuses have been carried out, this should surely be looked into.

4) The Mental Health Act and learning disabilities

In addition, I agree with the National Autistic Society’s call, as explained in their 2018 report Beyond Transforming Care – What needs to happen? for the Mental Health Act to be amended to suit the needs of people with autism and other learning disabilities. According to the report, 90% of cases where people are taken into ATUs are where they have been ‘sectioned’ under the Mental Health Act, which specifically allows autism as a ground for ‘sectioning’ a person despite autism not being a mental health problem that is to be ‘cured’. The story of a friend of my mother (Christianne Pollock, who likely has herself submitted evidence) who has had her son taken into an ATU under these grounds seems informative; she states that once he was in there, merely ‘challenging behaviour’ rather than any identified mental health condition was the reason cited for

2 https://www.dailymail.co.uk/news/article-6561505/Nurse-says-seen-killers-cared-better-autistic-children- health-unit-funded-NHS.html 3 Beyond Transforming Care – National Autistic Society, 2018 (pg. 15) keeping her son in the ATU. As the conditions in ATUs do not support the management of challenging behaviour at all, and instead, by their lack of appropriate care and hospital nature, increase it, this seems crazy; in fact, the likelihood of ATUs helping rather than damaging the mental health of autistic patients who actually do have a mental health need also seems very unlikely; I have read several reports of patients developing new mental health disorders, in particular including self-harming, inside ATUs. Thus, it does seem to me that the National Autistic Society are correct in their assessment that the Mental Health Act for people with autism and other learning difficulties is not currently fit for purpose.

5) Further recommendations by the National Autistic Society

I read in the National Autistic Society’s 2017 report Transforming Care: our stories and their 2018 report Beyond Transforming Care – What needs to change? several more detailed recommendations on what the government, and particular government bodies, should do to resolve the crisis. Whilst I have restricted myself to talking about the problems I feel that I understand at least fairly well in this submission, the content of all these recommendations looks sensible to me, and unless there are specific objections from the government about why particular points among these would not work, I see no reason that the government should not just adopt these in their entirety, and I would be very approving if they did. After eight years of failure since the Winterbourne House abuse scandal, it seems to me that radical and urgent action is needed, and that it is professionals who understand in detail both the experiences of people in ATUs and the legal mechanisms ruling them that should be at the forefront of changing the law to do this.

Thank you very much for your time, your attention, and the work that you are doing,

8 February 2019 Written evidence from Mr Ian Penfold (YDA0016)

1.1 Admissions • Care Education and Treatment Reviews (CETRs)1 are helping to reduce admissions. I can personally confirm that they are preventing 80% of admissions in the NHS Southern Region as reported by our regional quality assurance group. • Admissions are sometimes unavoidable due to a lack of appropriate care, support and housing in the community not because the person living with a learning disability or autism and challenging behaviour has a mental illness.

1.2 Inpatients • CETRs are helping to improve standards of inpatient care by using independent reviewers with lived experience to challenge and help maintain good standards of care whilst in hospital • CETRs are helping to reduce the length of inpatient stays by retaining a consistent focus upon discharge

1.3 Discharge • CETRs ensure that a focus on discharge is maintained throughout the stay in hospital, that key health and care partners are engaged appropriately, and that detailed plans are developed and actioned to assist with discharge to a community setting

1.4 Systematic Failures • The majority of people with LD or autism in ATUs do not need to be in hospital as their needs could be met locally if services and support were fit for purpose. This is a significant regional and local system failure. • Local Infrastructure - a lack of suitable local housing and social care providers able to meet the needs is making discharge difficult at times • Local NHS Health care services - are failing to meet the needs of this group of patients due to a lack of effective screening, monitoring and oversight by both primary and secondary care and a lack of reasonable adjustments2 cross the board. 1.5 Recommendations

1.5.1 Support/develop the CETR programme into the future and place it on a statutory footing to hasten interventions and discharge

1.5.2 Raise standards through staff training including positive behaviour support, supervision and oversight. Commissioning contracts must be more robust and include penalties for wrongdoing. We should also consider the role of CCTV in protecting the rights of patients in hospital.

1.5.1 Develop integrated and physically co-located health and social care teams at a local level to help manage the care and support of people with complex needs. Each person must have a Care coordinator of sufficient grade and experience to be able to facilitate multi-disciplinary support that fully meets the needs of the person and their Carers.

1.5.1 Compel each local area to provide support and services which are fit for this purpose including housing, reasonably adjusted healthcare2 and social care. Use what powers you have to compel Local Authorities to take their Market Shaping duties seriously to ensure that they maintain regional infrastructures and networks of competent Care and support providers to effectively meet the needs of the population.

1.5.2 Ensure that the financial resources required to meet the health and care needs of each person are ring fenced and where possible that the money follows the person.

1.5.3 Seek to reduce and remove the perverse incentives that see some patients being sent to hospitals out of area no longer being the financial responsibility of the original CCG at the place of origin.

1.5.4 Our aim to reduce the number of ATU beds being used to treat patients with Learning Disabilities or autism and challenging behaviour requires effective local services to be in place to meet the need. If local services are unable to compensate for the loss of ATU beds there is a significant risk that the private sector may see a financial opportunity to replicate the role of ATUs in local areas under the guise of supported living or residential care. 1.5.5 Please prevent the Liberty Protection Safeguards which are currently under Government scrutiny from becoming yet another opportunity for those in power to deprive vulnerable people of their liberty.

2 Brief Personal Introduction

2.1 I am a 66 year old male who lives in Farnborough in Hampshire. My personal experience comes as the father of a 30 year old son with complex needs (severe learning disability, autism, epilepsy, a bowel disorder and severe and challenging behaviour). My wife of 35 years lives with a mild to moderate learning disability, epilepsy, now early onset dementia and other health needs. I am her carer.

2.2 Our son has lived in residential care for the past 10 years. He is of a similar profile to many being sent to ATUs but has been spared this fate as we found a specialist community-based provider able to meet his needs.

2.3 The Provider is a specialist in caring for those with complex needs and all staff are trained in positive behaviour support3 which is used to good effect to improve my son’s quality of life and reduce his need to challenge in order to have his needs met. I am his health and welfare deputy and actively oversee his welfare.

2.4 Though he has a skilled staff team his autism, communication difficulties, variable anxiety and bowel flare ups result in physical challenges routinely yet they are able to meet his needs. Staff are well trained and supported both centrally by a head office which includes subject matter experts and locally by registered care managers and individual key workers to maintain standards, links and liaison with health services and family members as necessary.

2.5 I have been an expert by experience since the start of the NHS England Care and Treatment Review (CTR) Programme 3 years ago and have carried out many dozens of adult Care and Treatment Reviews (CTRs) and Care Education and Treatment Reviews (CETRs) which include an additional focus upon education essential for children and young people. 2.6 I have also been an active participant of numerous related groups, work streams and parent/service user/ patient led groups as set-out below trying my best to represent and champion the needs of people with learning disabilities or autism.

2.7 Given the personal struggles we have had raising our son I have become totally committed in retirement to do my best to try and help improve the lives of other disabled and autistic people who so often fail to have their needs met by the health and social care systems at large.

3 My Experience/Roles

3.1 Specific CETR related experience • CTR/CETR Expert by Experience (last 3 years) Southern and London regions • National CETR Steering Group (E by E rep) (2018 to present) • National CETR Data Group (E by E rep) • CTR Quality and Development Policy Refresh Group 2017/18 (E by E rep) • Southern Region CETR Quality Assurance group (E by E rep) • Bringing Us Together member and Survival Guides author4

3.2 LD, Autism and challenging behaviour experience • Father of an adult son with this diagnosis • Challenging Behaviour Foundation5 Local Champion (Hampshire) • Southampton, Hampshire & Isle of Wight TCP Housing group carer rep • Wessex LeDeR steering group patient rep • Healthwatch Hampshire6 Champion • Hampshire Parent Carer Network (parent rep) • Hampshire LD Partnership Board7 regional co-chair (North East Hampshire) • Henry Tyndale Community Special School8 Governor for 25 years (Currently Vice chair) • North East Hampshire and Farnham CCG area Patient Group lead for learning disabilities and dementia • North East Hampshire and Farnham CCG Community Ambassador9

4 Has the Government’s Transforming Care programme, which aims to significantly reduce the number of those detained inappropriately, been successful and if not, why not.

4.1 CETRs1 introduced as a part of the NHS England Transforming Care programme10 are helping to transform lives. It is an essential part of the solution not part of the problem.

4.2 CETRs are helping to raise standards before, during and after treatment through independent scrutiny based upon National policy and guidance; they are raising standards of care, challenging providers where we uncover evidence of poor care and holding them and commissioners to account. We are able to analyse the care being provided in detail, talk to patients and families and make sure that the patient’s needs are being met appropriately. We also make sure that the care team are focussed on discharge to a community setting as soon as possible.

4.3 Progress is very slow14 but this is not generally the fault of the Care and Treatment review programme rather is generally the result of a lack of appropriate local community provision, health and care services able to meet this complexity of need.

4.4 Building the Right Support12, part of the Transforming care programme10 sets out a clear framework for commissioners to guide the improvement of community services to meet this range of need. A National Service Model13 defines what good health, social care and housing services should look like locally and identifies the whole system response required to deliver high quality services and support for people with learning disabilities or autism and challenging behaviour.

4.5 The Transforming Care programme by itself cannot make the improvements required. This relies heavily on local health and care organisations and commissioners to develop, maintain and deliver. This is where the real problem lies. 4.6 Admissions

4.6.1 There is evidence that pre-admission community reviews are preventing something like 80% of admissions. This is achieved by using both community CETRs and the local crisis management system called the Local Area Emergency Protocol (LAEP) to bring together the patient, family where appropriate, health, social care and education professionals as necessary to establish or adapt local support to appropriately meet the patient’s needs.

4.6.2 I have seen from personal experience what a difference timely intervention makes as reviews in the community can really help focus the minds of all those involved to listen and act to avoid care breaking down.

4.6.3 Statistics collected by NHSE by area can verify the success rate by interrogating their Transforming Care dataset11.

4.7 Inpatients

4.7.1 CETR reviews taking place within hospitals are providing independent scrutiny of practices and standards but most important of all is that the independent interviewers on the panel are able to make sure that the focus is always on the needs of the patient by asking the following questions: • Am I safe? • What is my current care like? • Is there a plan in place for my future? • Do I need to be in hospital for my care and treatment?

4.7.2 In a similar fashion to CQC reviews, Key Lines of Enquiry (KLOE) focus the collecting and recording of information around these four headings to make sure that an accurate picture of the persons needs and the standard and suitability of the care being provided both meets the person’s needs whilst in hospital and is focussed on discharge as soon as possible.

4.7.3 Recommendations are then made and actions assigned to make sure that the patient is well cared for, receiving the right treatment and is returned to their community as soon as possible. 4.7.4 I have often been impressed with the dedication of the hospital staff teams but quite often they have needed prompting to provide information or reports and there have sometimes been significant gaps in the care being provided where for example, therapy assessments have not been completed and health checks not carried out.

4.7.5 I have not uncovered or encountered the inappropriate use of restraint or seclusion being used in any of the reviews that I have taken part in. I have seen some neglect caused by a lack of knowledge and training and one case of malnourishment caused by the patient refusing solid food for an extended period of time which was subsequently reported to the programme manager.

4.7.6 Another very important check that we carry out is with regard to restraint and whether this is being, or has been used, and why.

4.7.7 Our questioning of the team psychiatrist about medication sometimes identifies that powerful psychotropic drugs are being used and this is routinely challenged. Some of these drugs can cause damaging side effects so it is very important to question the reasons why these drugs are being used. We rely on our colleague clinical experts to lead on this. Psychiatrists are not always happy to be challenged and can be quite defensive at times. Any concerns are recorded and actioned by the CETR review team.

4.8 Discharges

4.8.1 Discharge is the most challenging part of the pathway. The role of the CETR is to ensure that the patient’s needs are clearly identified, all agreed actions are lodged with those responsible and time limits set. A copy of the final report is given to all those involved including the patient and family (where appropriate).

4.8.2 The category/status of the patient will of course determine the actual procedure for discharge and could involve MOJ restrictions, CPA and the establishment of Section 17/117 support. Other considerations include education, health provision, social care and housing from providers who are competent and have the range of resources needed to reliably meet the ongoing needs of the person concerned. Our lived experience as members of the panel helps ensure that the right setting and care will be commissioned to meet the ongoing needs of the person effectively and therefore avoid a break down in services and a return to hospital. 4.8.3 Local community services often find it very difficult to meet the complex needs of people with learning disabilities or autism and challenging behaviour due to a lack of training, knowledge, specialist resources and suitable local housing provision. An evaluation of Building the Right Support published in 201812 made 13 recommendations where further focus is needed.

4.8.4 There are also sometimes issues with the motives of private care providers focussing on profit, a lack of choice in supported living or commissioners not willing to agree care on purely cost grounds. Belinda Schwehr from the specialist advice charity CASCAIDr explains15.

4.9 Systematic Failures of local services

4.10 Professional deficit - Local Health/Care staff and service providers are often not skilled enough to know how to support people with LD or Autism and challenging behaviour appropriately resulting in poor assessment, care14,19 and a lack of reasonable adjustments 2.

4.11 Lack of capacity - Local services are often not coping with demand which can mean long waiting times and sometimes inappropriate application of criteria and the rationing of care and support14 (demand avoidance).

4.1 Lack of capacity - Insufficient local social care staff qualified and supported to cope with the level of need14.

4.1 Lack of capacity - Insufficient suitable housing opportunities14.

4.1 Lack of resources - Services doing their utmost to avoid committing themselves to the cost of ongoing care and support preferring to provide reactive intervention instead. This leads to more people ending up in crisis14.

4.2 Example of Health system failures:

4.2.1 Personal experiences • Reasonable adjustments – There are often problems with communication, the care environment and the treatment itself. • Significant difficulties and delays in obtaining referrals/appointments with secondary care services. Access to ongoing and proactive secondary care is either non-existent or access to periodic routine reviews for chronic conditions are very infrequent or non-existent.

4.2.2 Anecdotal experiences • Difficulties getting a GP appointment (can have to wait for up to 3 weeks), • Obtaining a diagnosis for autism can take three years and I am aware that CAMHS is often not fit-for-purpose with children at risk of suicide sometimes being told that there will be no help because they don’t really mean it or following a referral find themselves on a long waiting list for many months. I have spoken with mums whose children are desperate yet they say they can’t get any help. Children sometimes end up in crisis because of a lack of help.

5 If it has not been successful what needs to be done to ensure that the numbers detained are reduced more rapidly.

5.1 Support/develop the CETR programme into the future and place it on a statutory footing to improve impact, hasten intervention and discharge.

5.2 Significantly Improve staff training in primary and secondary care and within Social Care services particularly social workers.

5.3 Compel each local area to provide support and services which are fit for this purpose including housing, reasonably adjusted healthcare2, ring-fenced resources and care providers who can support those with learning disabilities or autism and challenging behaviour in a sustainable manner.

6 Whether the human rights of children and young people with learning disabilities and/or autism who are detained in mental health hospitals are being breached18. 6.1 The human rights of children and young people with LD or autism and challenging behaviour are being breached in hospital. Frequent reports of inhumane treatment and restraint from parents and others prove that these hospitals can be in breach of Article 3 of the Human Rights Act. The inhumanity of this is truly shocking. These are people who often cannot understand what is going on and therefore can resort to defending themselves when they feel challenged or through their autism may not be able to cope or have their needs met in this environment.

6.2 The majority of people with LD or autism and challenging behaviour should not be going to ATUs. Doing this often makes the patient’s situation worse rather than better. Removing a person’s freedom has to be done for the right reasons. Here I feel that we are attempting to treat the symptom and not the cause.

6.3 The human rights18 of children and young people with LD or autism and challenging behaviour have been breached long before the go anywhere near a mental health hospital however.

Local health and care systems often fail to meet the needs of children and young people with LD or autism and challenging behaviour because while they are living at home it’s the parents that are expected to meet the needs of their child. Support with assessment and diagnosis, care and support for families means that they can struggle and even end up in crisis because they are unable to do it all themselves.

This lack of care and support may well fall within the scope of The Equality Act2, Article 1418, the Equality Act Public Sector Equality Duty2 and the duty to make reasonable adjustments2.

6.4 There is no doubt that some treatment being provided in assessment and treatment units is appalling however the high numbers of people with LD or autism being held in ATUs is primarily a symptom of a wider problem14.

7 If, so how are they breached and what needs to be done to better protect them? 7.1 Article 3: Freedom from torture and inhuman or degrading treatment5

Inhuman treatment or punishment is treatment which causes intense physical or mental suffering

Degrading treatment means treatment that is extremely humiliating and undignified.

7.1.1 We must raise standards through better staff training, support, supervision and oversight. Commissioning contracts must be more robust and include penalties for wrongdoing. We should also consider the role of CCTV in protecting the rights of the patient 16,17.

7.1.2 The oversight provided by CETRs must continue to make sure that the patient and family (if appropriate) have an opportunity to have their say, that professionals continue to be subject to regular independent review by those with lived experience and the focus on discharge is maintained throughout treatment.

7.2 Article 5: Right to liberty and security18

You have a right to your personal freedom. This means you must not be imprisoned or detained without good reason.

7.2.1 These people do not have a mental health issue and therefore are being deprived of their freedom unlawfully. They have a right to be provided with appropriate care and treatment in their own communities.

7.3 Article 8 protects your right to respect for your private and family life18

You have the right to live your life privately without government interference.

7.3.1 These people are being removed from their families and community not because they are sick but because the State is not providing the care and support in their communities that is a legal right. We must develop community services in line with the Building the Right Support framework12 and National Service model13.

7.4 The Equality Act 20102 This Act prohibits discrimination against people with the protected characteristics that are specified in section 4 of the Act. Disability is one of the specified protected characteristics.

7.4.1 Health and Social Care services often discriminate against disabled people due to a lack of reasonable adjustments2. This means that disabled people sometimes struggle to access services for a number of reasons including difficulties with communication, a lack of accessible facilities, refusal to treat due to confusion about consent issues, using challenging behaviour as a reason not to treat or excessive waiting lists. As a direct result these people are clearly not being given appropriate care and treatment despite their protected status.

7.4.2 The Liberty Protection Safeguards currently under developed have the potential to negatively impact disabled people if Care managers are allowed to commission or authorise these assessments due to potential conflicts of interest. This could mean the person’s rights under Article 8 being infringed18.

References 1. Care and Treatment Reviews https://www.england.nhs.uk/learning-disabilities/care/ctr/

2. Equality Act guidance and information https://www.equalityhumanrights.com/en/equality-act/equality-act- 2010

3. Positive Behaviour Support (PBS) Academy http://pbsacademy.org.uk/

4. Bringing Us Together http://pbsacademy.org.uk/ • Survival Guides: http://bringingustogether.org.uk/publications/survival-guides/

5. Challenging Behaviour Foundation https://www.challengingbehaviour.org.uk/

6. Healthwatch Hampshire http://www.healthwatchhampshire.co.uk/ 7. Hampshire Learning Disability Partnership Board http://www.hampshirelearningdisabilitypartnershipboard.org.uk/

8. Henry Tyndale Community Special School http://www.henrytyndale.hants.sch.uk/

9. North East Hampshire and Farnham CCG community ambassadors https://www.northeasthampshireandfarnhamccg.nhs.uk/get- involved/community-ambassadors

10. Transforming Care https://www.england.nhs.uk/learning-disabilities/care/

11. Assuring transformation data https://www.england.nhs.uk/learning-disabilities/care/atd/

12. National plan – Building the right support https://www.england.nhs.uk/learning-disabilities/natplan/

13. National Service Model https://www.england.nhs.uk/wp-content/uploads/2015/10/service- model-291015.pdf

14. Evaluation of Building the Right Support Summary of findings to date and recommendations arising October 2018 https://www.strategyunitwm.nhs.uk/sites/default/files/2019- 01/1%20Short%20Summary%20of%20Recommendations_0.pdf

15. Being stuck in an ATU: Belinda Schwehr CASCAIDr (specialist advice charity) https://www.cascaidr.org.uk/2018/11/06/being-stuck-in-an-atu/

16. Using surveillance in your care service https://www.cqc.org.uk/guidance-providers/all-services/using- surveillance-your-care-service

17. Mental Health Units (Use of Force) Act 2018 http://www.legislation.gov.uk/ukpga/2018/27/enacted

18. The Human Rights Act Articles and Protocols https://www.equalityhumanrights.com/en/human-rights/human- rights-act 19. LeDeR Annual Report December 2017 https://www.hqip.org.uk/wp-content/uploads/2018/05/LeDeR- annual-report-2016-2017-Final-6.pdf

7 February 2019 Written evidence from the Challenging Behaviour Foundation and Mencap (YDA0014)

Summary

The evidence and data suggest that the Government’s Transforming Care programme has not been successful. In our view there are three main reasons for this failure:

• The failure of local services and commissioners to create local bespoke packages of care and support for children and young people.

• The lack of early intervention for challenging behaviour to prevent future crises and admissions.

• A lack of cross-Government leadership to address the barriers to change

Children’s rights are routinely breached when they are detained in ATUs. We support the recommendations to legislate to end the inappropriate use of force and harmful practices on children with learning disabilities and recommend action to secure effective community support for this group of children.

About the Challenging Behaviour Foundation The Challenging Behaviour Foundation (CBF) is a charity which exists to demonstrate that individuals with severe learning disabilities who are described as having challenging behaviour can enjoy ordinary life opportunities when their behaviour is properly understood and appropriately supported.

About Mencap We support the 1.4 million people with a learning disability in the UK and their families and carers. We fight to change laws and improve services and access to education, employment and leisure facilities, supporting thousands of people with a learning disability to live their lives the way they want We are also one of the largest providers of services, information and advice for people with a learning disability. The Challenging Behaviour and Mencap have been campaigning with families since the abuse scandal at Winterbourne View to ensure that children and adults with a learning disability and behaviour that challenge are moved out of inpatient units and get the right support in their local communities and have expertise in early intervention for children with learning disabilities.

SUBMISSION

Has the Transforming Care Programme been successful?

No. The number of children in inpatient units has doubled since the programme started, ( 260 inpatients under 18 reported in December2018).

Under 18s are most likely to experience restrictive interventions in ATUs and, if so, to experience twice as many instances of restrictive interventioni.

Discharging children to successful community placements: the revolving door

Failure of local services and commissioners to create local bespoke packages of care and support for children and young people is compounded by the failure of NHSE and Government to compel /enable local areas to create those packages of support and tackle the issue of private providers, whose financial incentive is to fill beds in ATUs.

We have significant concerns about private ATUs where children have had horrendous experiences of restraint, seclusion and over-medication. We know that while beds are available they will be used as an easy option where local areas fail to develop appropriate community support.

Consistent with what families tell us, the VODG report (2018)1 found people discharged from inpatient units are readmitted due to community placements failing within months. NHSE do not publish data on readmissions.

A Mencap FOI found nearly half of local areas had no idea how many learning-disabled children are in their area, demonstrating clear implications for planning provision.

1 Voluntary Organisations Disability Group Transforming Care: The challenges and solutions (2018) A Health Service Journal FOI found of 169 CCG respondents, 88 confirmed no short-term crisis accommodation for patients in their area, and 49 did not have community support services for children and young people. These key elements of the NHSE Service Model should be in place by March 2019 otherwise children will not be discharged from ATUs.

Since Transforming Care (2012), inpatient units have expanded and new ones built Unless action is taken by Government to tackle perverse systemic financial incentives, private inpatient providers will continue to admit children for long periods.

Recommendation 1: A national team, supported and advised by experts and families, to help remove barriers and facilitate well-funded, practical solutions in partnership with Local Authorities (LAs) and CCGs.

Early Intervention: preventing admission in the first place

While Government appears content to spend £250,000 per child per year in an ATU, there has been no long-term or significant investment in local, cost- effective, evidence-based Positive Behaviour Support (PBS) Services or other effective interventions to support the child and their familyii . The Bristol children’s PBS service saved £1.8m keeping children in local schools and in Ealing the annual cost of supporting seven young people was less than one admission. Professor Martin Knapp, LSE says “Crises can be well-managed locally in what look very cost-effective ways using a PBS approach.” Despite consensus among experts there is little use of PBS with children.

Population based samples show an increased risk for behaviour problems in children with learning disabilities, by the time they are 3 years old. Early intervention is essential to proactively address this issue.

Children displaying challenging behaviours are at greater risk of social exclusion, institutionalisation, deprivation, physical harm, abuse, misdiagnosis, exposure to ineffective interventions, and failure to access evidence-based interventions.iii

Our academic expert group recommended: early, evidence-based behavioural interventions; family support and early identification and rapid response using approaches such as Positive Behaviour Support.

The Transforming Care programme accepted our analysis which influenced the Lenehan reviewiv and NHSE guidancev The content of this guidance, if implemented, would help move towards better community support for children and young people. There has been minimal focus on children’s services within Transforming Care. Most Transforming Care Partnerships are not linked to equivalent SEND Boards and although we are regularly re-assured “this covers children too” most of the policy has been developed with adults in mind.

Several areas have been funded to become “Accelerator sites” for children and young people. However, progress is expected within six months meaning any changes made will be superficial.

Despite warm words we have seen no appetite to invest in evidence-based early intervention.

Recommendation 2: Investment in local PBS services for children and young people and early intervention support for families.

Lack of cross-Government leadership: always someone else’s responsibility

This is not just a health issue; the Department for Education is responsible for education and social care of children and key to implementation of better early intervention. However, DfE rarely aligns with those responsible for children’s health in the Department of Health and Social Care, creating cracks through which disabled children’s laws and policies increasingly fall.

Lack of cross-governmental working is highlighted in the Mental Capacity (Amendment) Bill. It creates a new Liberty Protection Safeguards (LPS) system that contradicts existing legislation, e.g. the Children Act 1989, raising deep concerns regarding the future detention of young people. Despite the Transforming Care agenda, many young people with complex needs are still sent out of area and families are struggling to return them home.

The recent independent review into the Mental Health Act highlighted numerous concerns about how the Act is working for people with a learning disability and/or autism. However, challenging placements for those detained under the new Bill’s administrative scheme will be far more difficult. A cross- Department approach to protecting rights is required provide a holistic solution.

It is vital Transforming Care post-March 2019 learns lessons from failures to date. However, the NHS long-term plan extends the deadline but does not explain past failures or how the new programme will transform care by 2024. Recommendations from the NHS England evaluation of Building The Right Support include: • More preventive support for families. Within this, there is a specific case for focusing on children and young people, people with autism and those with mental health conditions; they seem to experience the biggest gaps in preventative care and support. • Children’s services (including education) and wider government must take more responsibility for the implementation of Building the Right Support.

Recommendation 3: A cross-Government strategy focussed on this group to provide better holistic community support.

Human rights

“They don’t see my child as a human being” Family Carer

One family explained the “shock of separation” when their child was detained in an ATU. When we studied the learning disability census data in depthvi we found amongst 0-18 year olds, 41% stayed for up to three months and nearly three quarters (74%) for up to one year. There were a small number of long-term in-patients who had already stayed for 5 years or more. 29% were being treated 100km or more from home. Equivalent data for 2018 is not available publicly, but we know families for whom long distances and long stays are a reality.

Our joint report Keeping in Touch with Homevii found many families are discouraged from visiting their children, LAs often fail to fund travel and telephone/ digital contact is rarely used as it might be in schools, e.g., through video diaries / photos. In our view this breaches Articles 7,9, 20 and 23 of the UNCRC, articles 9,19 and 23 of the UNCRPD and article 8 of the ECHR (right to family life).

Our Keeping in Touch with Home reportviii sets out best practice in maintaining links with families and the community when children are away from home, including action for LAs and settings.

Children in ATUs being most at risk of restrictive intervention, including seclusion, restraint and inappropriate use of medication, is a clear breach of Article 3 of the ECHR, article 37 or the UNCRC and article 15 of the UNCRPD. We have supported families whose children have been held for long periods in bare rooms, without toilet facilities; have been regularly subject to prone restraint and have been given psychotropic medication resulting in significant mental and physical deterioration.

Children in ATUs are often unable to access meaningful education, breaching Articles 28 and 29 of the UNCRC. One setting said a child was receiving education but when pressed by the CBF and the Children’s Commissioner, confirmed that he did not actually attend the education room. No visual timetable or alternative had been offered to help him understand or access education. This is not unusual.

We welcome the Children’s Commissioner for England investigating the experience of children with a learning disability and/or autism in inpatient units.

The State of Children’s Rights report (CRAE,2017) referenced articles 23 and 39 of the UN convention on the rights of the child and recommended • Government should establish a commitment in the forthcoming Mental Health Treatment Bill to end the inappropriate use of force and harmful practices. • Fulfilling as a matter of urgency the Government’s commitment to ensure that no child with learning disabilities and behaviours that challenge be placed inappropriately in an inpatient ATU. • Future admissions should be prevented by securing evidence-based support close to home, and early intervention services.

Recommendation 4: Implement above recommendations to safeguard children’s rights. Where children are living in ATUs, ensure settings and Las fulfil their duties maintaining links to family and community, safeguarding children and ensuring their right to education.

7 February 2019 i NHS Digital ii Paving the Way: How to develop effective local services for children with learning disabilities whose behaviours challenge. The CBF, 2015 iii Emerson E., & Einfeld S. (2011). Challenging Behaviour (3rd ed.). Cambridge University Press, Cambridge: UK. iv These are our children: A review by Dame Christine Lenehan Director, Council for Disabled Children Commissioned by the Department of Health, January 2017 v Developing Support and Services for children and young people with a learning disability, autism or both.” NHSE (2017). vi Children with learning disabilities whose behaviours challenge; what do we know from national data? Pinney 2013) vii Keeping in Touch with Home: How to help young people with learning disabilities and their families keep in touch when they are living away from home. The Challenging Behaviour Foundation and Mencap (2016). Written evidence from Affinity Trust (YDA0013)

Has Transforming Care Been Successful?

The initial Transforming Care programme (TCP) had targets that were too ambitious and did not fully appreciate the complex needs of the people to be discharged. Local authority commissioners were charged with planning and procuring services for young people previously commissioned by CCGs and NHS England who they did not know and there seemed to be an over-simplistic assumption that most people could be successfully discharged with good, person-centred support and a fairly robust environment without the necessary foundations in place for this to be effectively provided. Numbers of people in hospital have reduced by a net figure of just 80 people and there are still about 260 children and young people detained, many of whom have a diagnosis of disability neurodevelopmental disability (such as Autism) without a recognised learning disability. However, there have been some elements of success: • Raising awareness among the general population of the needs of people with learning disabilities who live in segregated institutional settings – cases like that of ‘Bethany’ would not have been considered newsworthy before. • Identifying the numbers of people each TCP has to support in new ways with clearer information about their needs and likely discharge dates. • Introducing Care, Education & Treatment Reviews and Blue Light Meetings which aim to ensure that the multi-disciplinary team consider each actual and potential admission individually, think about all options and support available and plan for early discharge where admission is inevitable to avoid people having delayed transition of care (DeToC). This is not always followed through fully however as there are still a high number of admissions who are subject to delayed transition of care. • Recognising the higher cost of support and housing for this group, including the need for properly-funded transition work and investment in bespoke accommodation. This recognition of higher cost does not always translate into action however, with some local authorities meeting these costs more thoroughly than others. • Increasing support available to young people, families and support providers in the community through the creation (or expansion) of multi-disciplinary intensive support teams offering a rapid response in crisis situations and the development of short stay crisis accommodation. • Ensuring government scrutiny of the work of TCPs to ensure they continue to make progress and justify where they do not. What Needs to be Done? To speed up discharges and prevent readmission, commissioners need to invest in planned transition work, clinical support (eg a responsive Intensive Support Team) and accommodation. Providers like Affinity Trust cannot support people in a financially sustainable way if they are expected to cover rental voids and transition costs incurred before the start of a contract. To prevent admission, it is vitally important to intervene proactively at the pre- and early post-diagnosis stages to prevent children from suffering irreparable damage to their mental health, wellbeing and development. We have knowledge of multiple experiences of children waiting many months for diagnosis and/or support due to a lack of resources and funding. Even more concerning, where a child or young person has no learning disability but has a neurodevelopmental disability of another type, such as autism, their treatment and support is often delayed due to arguments about funding responsibility and this is inexcusable. Consideration should be given to the creation of specialist care management teams to support such children and young people, ensuring a responsive service that prevents this identified group ‘falling through the net’. Funding and resources need to shift from reactive services such as in- patient CAMHS to proactive and early intervention services such as our own Positive Behaviour Support (PBS)service which offers intensive PBS support to families, schools and others involved in a child’s life, with the aim of keeping them at home, out of residential care and specialist out of area placements as well as improve their quality of life. This enables them to continue with their education and development in a positive environment with positive relationships; once this is lost the damage to the child’s personality and attachments during a key phase of development can be irreparably damaged. Frequent placement breakdown in childhood can lead to permanent attachment issues and potentially associated attachment disorders and as an adult, this will continue as the individual does not have the personal resources to survive and thrive outside of an institutional setting - these cannot be easily given back to them in adulthood. Local authority and health commissioners need to recognise that making early investments will lead to real and tangible savings in the longer- term. The fact that the later saving may come from a different budget does not negate them.

Breach of Human Rights We believe that there are clear serious and potentially dangerous breaches of human rights against children and young people with learning disabilities and other neurodevelopmental disabilities who are receiving inappropriate or inadequate support and would summarise these as follows, based on the Articles of the UN Convention on the Rights of the Child: • Article 2, Best Interests of the Child & Article 9, Separation from Parents: It is rarely, if ever, in the best interests of a child to remove them from their family home, place them in an institutional setting (often far from home) and restrain them with hands, locks or medication. It is also very rare for parents to wish to be separated from their child or vice versa, if they are receiving the right support. It can also be argued that the regular utilisation of distant out of areas placements deprives the child and family of regular contact in person. • Article 6, Life, Survival and Development: Children have the right to develop to their full potential and this is not possible when they do not receive the right support to maintain their mental wellbeing. • Article 12: Respect for the Views of the Child: Where a child has expressive communication difficulties and/or a cognitive impairment, augmented support is needed to enable to them to express their views effectively. This takes time and resources and is all too often disregarded. • Article 19, Protection from Violence, Abuse and Neglect and Article 20, Children Unable to Live with Their Family: Children entering hospital or other institutional settings are often restrained physically or pharmacologically, subjected to violence or threats from other in-patients or poor practice and staff have little experience of nurturing relationships and ensuring good emotional development of the child. • Article 23, Children with a Disability: Many children could remain at home with the right investment in intensive and proactive community support such as that offered by our PBS model and with early intervention and diagnosis. Failure to provide this proactive support removes, without good reason, their chance of staying at home and reduces the chances of a meaningful community life in adulthood. • Article 28, Right to an Education and Article 29, Goals of Education: When a child is placed in an institutional or hospital setting, the standard of education they receive is almost always inferior to that of a school setting and is of secondary importance to their medical treatment. • Article 37, Inhumane Treatment and Detention: We contend that there is simply no need for many of our children and young people to be admitted to hospitals and other institutions and that many admissions occur because the child has not received the right support at an earlier stage in their development. This may be due to a wait for diagnosis or treatment or because, as described above, the emphasis has been on reactive and restrictive support rather than a positive and proactive approach.

Preventing and Minimising Breaches It cannot be over-emphasised that early and responsive diagnosis and intervention are key to preventing admissions or residential placements which put the child’s human rights at risk. In itself, the experience of admission, and particularly multiple admissions or placements can cause trauma which further affects the development of the child’s personality. The child is simply denied the developmental experience of a neurotypical child. This damage can be permanent and the resulting attachment issues combined with failure to develop independent living skills and community living skills can often prevent them, later in life, from being able to develop and sustain meaningful relationships and to live outside of an institution safely and happily. Clearly, as well as the tragedy for each life affected, there is a resulting financial burden on health and social care services for many, many years and basic economic principles would encourage investment in early intervention to prevent or reduce this overwhelming cost. Affinity Trust has proved that good support at home can change lives and we would urge the government to consider how and where it places resources to give the best outcomes for children and families. 7 February 2019 Written evidence from Dimensions (YDA0012)

Executive Summary • Having the right support to live an independent and fulfilling life in the community is an established principle of learning disability care.

• Since the Winterbourne View scandal in 2011 government policy has committed to moving people from hospital to the community, but targets have not been met.

• The right to liberty is a human right. The right of people with learning disability and/or autism to liberty must be upheld.

• Some people with learning disability and/or autism are detained only because there is not appropriate support for them in the community. They have no need for assessment or treatment in an inpatient setting.

• There are significant barriers to discharging people from inpatient care, even when they are ready to leave. Those barriers can be found in inpatient settings and within commissioning and funding structures.

• People with learning disability and/or autism continue to be admitted and readmitted to hospital, making it difficult to reduce the overall number of people in inpatient settings.

Introduction Dimensions is a not for profit support provider for adults with learning disabilities and autism. Dimensions supports around 4,000 people across England and Wales. Dimensions’ vision is for an inclusive society where people have equal chances to live the life they choose. We provide person-centred support to enable people to live as independently as possible in their community. Dimensions provides support to people who have lived in and who are moving out of inpatient care. In the past year, we have set up or begun to set up support for 17 people leaving Assessment and Treatment Units. In 2017, we supported the second longest serving resident of a UK mental health hospital into her own home. Her story can be found in Appendix A alongside other examples of how person-centred support changes people’s lives. The evidence submission will continue as follows: 1. Background to Inpatient Care for People with Learning Disabilities and/or Autism 2. The Rights of People with Learning Disabilities and Autism in Inpatient Care 3. Barriers to Reducing the Number of People in Inpatient Care 4. Solutions 1. Background to Inpatient Care for People with Learning Disabilities and/or Autism 1.1 Since the Mansell Report in 2007 it has been an established principle that people with learning disabilities and/or autism can live independently in the community with the right support.1 And even before this, there had been a transition towards community based support provision, to provide people with greater choice and control over their lives and move away from more institutional, medicalised models of disability care. 1.2 In 2011, the Winterbourne View scandal exposed the abuse of people in a private Assessment and Treatment Unit (ATU). The scandal underlined how problematic institutional models of care can be and turned attention to some 3,000 people with learning disability and/or autism in such settings. The Transforming Care Programme 1.3 In 2015, in response to the Winterbourne View scandal and subsequent Bubb Report2, the government initiated a programme to reduce the number of people with learning disability and/or autism living in inpatient settings. 1.4 Transforming Care centred on the principle of ‘homes not hospitals’ – acknowledging that few, if any, individuals with learning disability and/or autism had a long term need for inpatient, psychiatric care.3 1.5 Transforming Care committed to reducing overall numbers of people in inpatient settings by 35-50% by April 2019. Presently, it is unlikely that these targets will be met – with overall levels in inpatient units down by just under 20% of 2015 numbers.4

1 Services for People with Learning Disabilities and Challenging Behaviour or Mental Health Needs, Department of Health, 2007 2 Winterbourne View: Time for Change, Transforming commissioning of services for people with a learning disability and/or autism, Department of Health, 2014 3 https://www.england.nhs.uk/learning-disabilities/care/ 4 The NHS Long Term Plan, Department of Health, 2019 The NHS Long Term Plan 1.6 In January 2019, the government published the NHS Long Term Plan, in which learning disability and autism are clinical priorities. 1.7 The Long Term Plan sets alarmingly unambitious targets for the reduction of people in inpatient care. By 2023/24 the government is now committed to reducing the number of inpatients with learning disability and/or autism to 50% of 2015 levels5 – essentially reasserting the target initially set for April 2019. 1.8 Additionally, the plan commits to working with the Care Quality Commission to identify inappropriate use of seclusion and restraint and to ‘focus on the quality of inpatient care across the NHS and independent sector’6. Read alongside the disappointing targets to reduce inpatient levels, Dimensions is concerned that Transforming Care and the principle of ‘homes not hospitals’ have been abandoned. 1.9 Absent from the Long Term Plan are clear policies to resolve the systemic problems that leave people in inpatient care for extended periods of time, or commitments in relation to accountability and scrutiny should numbers fail to reduce in line with stated targets (as has been the case since 2015).

2. The Rights of People with Learning Disabilities and Autism in Inpatient Care 2.1 The right to liberty is fundamental. In the UK, we are meant to have robust legislation that ensures a person cannot be deprived of their liberty without good reason. 2.2 Under the Mental Health Act 1983 (MHA) people with a mental disorder who pose a risk of harm to themselves or others can be deprived of their liberty for assessment and treatment. Under the Mental Capacity Act 2005 (MCA) those who lack capacity to make a decision about their care and treatment can be deprived of their liberty in their best interests. 2.3 People with learning disability and/or autism are deprived of their liberty in inpatient units under both pieces of legislation, with around 90% of inpatients detained under the MHA.7 2.4 Yet many people in inpatient care could live in the community, under far less restrictive regimes, with the right support. In essence, detention

5 Mental Capacity Amendment Bill Deb 15 January 2019 c35 6 The NHS Long Term Plan, Department of Health, 2019 7 Table 3, Learning Disability and Autism Statistics from Assuring Transformation December 2018: Reference Tables, NHS Digital, December 2018 is ‘necessary’ only because of a failure to commission and implement appropriate community based support. 2.5 Furthermore, once detained people often remain in hospital indefinitely, whilst steps are taken to create a support infrastructure that will permit them to move out of hospital. Thus, they are deprived of the liberty long after their need for assessment or treatment (fundamental principles of detention under the MHA) has been met. 2.6 We welcome the committee’s attention on the alarming conditions and regimes that operate in some inpatient units and we emphasise the gravity of the maltreatment, abuse and patient deaths in inpatient units that have been exposed recently. 2.7 At the same time, we underline the need to consider the right to liberty within this inquiry. Were the right to liberty upheld effectively, many should not find themselves detained and thus at risk of the poor care that has been delivered in such units.

3. Barriers to Reducing the Number of People in Inpatient Care 3.1 It is clear from the statistics that the Transforming Care Programme has failed to meet targets. Furthermore, after almost 4 years it remains that 57% of people have been in hospital for over 2 years, and 16% of people have been in hospital for 10 years or more.8 3.2 We outline the issues that have undermined success in Transforming Care. Overall, the programme has been too focussed on reduction targets, rather than building an infrastructure for community living for people with learning disabilities and/or autism. 3.3 The Committee’s inquiry focuses on the rights abuses of young people. We emphasise that there are also significant numbers of adults in such settings, some of whom have transitioned from adolescence to adulthood whilst in inpatient care. 3.4 Worryingly, there is a steep decline in family involvement in care planning as inpatient age increases. The most recent statistics show that 165 people under 18 had family involvement, rising to 290 people aged 18-24 and 410 people aged 25-34. This falls starkly for people aged 55- 64, where just 80 people had family involvement and people over 65, where just 15 did.9

8 Table 8, Learning Disability and Autism Statistics from Assuring Transformation December 2018: Reference Tables, NHS Digital, December 2018 9 Table 23, Learning Disability and Autism Statistics from Assuring Transformation December 2018: Reference Tables, NHS Digital, December 2018 3.5 It is important that the rights of adults in inpatient care are upheld, particularly those who have been in hospital for an extensive period of time and who may have no family member to advocate on their behalf. Barriers to Moving People Out of Inpatient Care 3.6 The barriers to moving people out of inpatient care can be divided into 2 categories: 1. Barriers within inpatient settings 2. Barriers within commissioning and funding 3.7 The transition of people out of inpatient care demands joined up working across health and social care. Social care providers delivering community support must be involved in a process that begins and is led by an inpatient health setting. 3.8 Once the psychiatric lead for someone’s care decides they are able to move out of an inpatient unit, there is then a process of sourcing an appropriate home and a provider who can deliver support that meets their individual needs. 3.9 Barriers within inpatient settings include: a) Risk aversion and over cautiousness to move people into community support, particularly within psychiatry where many practitioners have a forensic background, rather than specialism in learning disability and autism.

b) Ineffective care and treatment arrangements in inpatient settings that lead to an escalation of the individual’s needs, thus decreasing the likelihood that they will be deemed fit for discharge.

c) Lack of knowledge of different community support providers and thus a limited awareness of the support models that might be available to meet an individual’s needs – some of which might help to overcome risk aversion, were they known to clinicians.

d) Lack of force behind the Care and Treatment Review (CTR), which is one of the few opportunities for family members and others with lived experience to input into decision-making about a person’s care and support options. 3.10 Barriers within commissioning and funding include: a) Absence of ring-fenced funding for community based support. Currently funding is largely used to meet ongoing costs for inpatient care. b) A 5 year wait after admission for dowry payments from health bodies to local authorities to facilitate the transition of people who have been in inpatient care for the longest periods of time.

c) Lack of knowledge and understanding amongst commissioners of appropriate models of support for people moving out of hospital. Often these models demand higher upfront costs, but reduce over time as someone’s level of need reduces.

d) Rigidity in thinking about models of support and resulting commissioning contracts, which fail to deliver person centred support that meets someone’s particular needs. This is exacerbated by the lack of meaningful involvement of people and their families in discharge planning from the outset.

e) Failure to involve community providers in planning for discharge early enough, meaning services are set up too quickly and without time for the most appropriate provider to be sourced, or for the provider to get to know the person. In some cases, the provider will pull out of planning in the final stages for this reason and the person is left to wait until another can be sourced, despite being ready to leave hospital.

f) Difficulties sourcing appropriate housing alongside appropriate support, so that a support team might be in place, but the person has nowhere to which they can physically move from hospital. 37% of delayed discharges are attributable to a lack of suitable housing provision.10 Recent policy in relation to supported housing has greatly hindered the availability of suitable homes.11 3.11 It must be noted that the current pressures on the social care sector, including financial pressures, and issues in recruitment and retention of staff, make it increasingly difficult to overcome some of the issues set out above. Barriers to Reducing Admissions to Inpatient Care 3.12 Alongside impediments to moving people out of hospital, there remain individuals who are admitted or re-admitted to hospital, due to a

10 Table 6, Learning Disability and Autism Statistics from Assuring Transformation December 2018: Reference Tables, NHS Digital, December 2018 11 Government plans cause 85% drop in new homes for most vulnerable, National Housing Federation, 25 August 2017 failure in community support provision. This adds to the slow pace of change in reducing overall inpatient levels. 3.13 Much is made of the ‘crisis’ that individuals reach prior to admission, but anecdotally families talk about their loved one being admitted to inpatient care because of very small disruptions in finely balanced and overstretched support arrangements. For example, the parent as the primary carer falls ill and can’t deliver care for a week or so; or renovations to their house means a change in the pattern of living at home and unsettles their loved one. These instances show how very minor events can have life changing consequences where care and support is hanging on a thread. 3.14 Transition from children’s to adult services remains a pressure point at which some will come to be admitted to inpatient care. It is a point not only where entitlements to services change (and can diminish), both for the individual and their unpaid carers, but also a time when the person is likely to be experiencing the physical and emotional changes of adolescence. Early intervention and ‘respite’ or short breaks provision should be sufficiently available to families at this point. 3.15 Importantly, for many young people with a learning disability and/or autism, a diagnosis should be made in childhood. On this basis, local authorities should be able to effectively plan services that meet the needs of young people and their families long in advance, so that there is never, or very seldom, a need for admission. The current backlog for diagnosis, particularly for autism limits opportunities to plan for individuals as they grow up. 3.16 Finally, for those who have been admitted and discharged, it is crucial that appropriate support is found in order to prevent readmission (the barriers outlined in paragraphs 3.10.e and 3.10.f are relevant here). The Committee is aware of the poor treatment some receive in such units and the psychological damage this might cause in a person. Even in less severe circumstances, it is easy for people to become institutionalised in medicalised units, which reduces someone’s independent living skills over time. 3.17 Without appropriate support, some individuals become trapped in a cycle of admission and placement breakdown, where each instance reduces the chances that they will go on to live safely and independently in the community.

4. Solutions - Create robust criteria for detaining people with learning disability and/or autism, with a duty on local authorities or clinical commissioning groups to consult with the person and their loved one before they are admitted to inpatient care.

- Give statutory weight to the Care and Treatment Review and implement good practice guidelines in relation to how they should be carried out.

- Provide ring fenced funding to support local authorities to build appropriate support infrastructure for people with learning disability and/or autism – both to prevent admission and provide places to which inpatients can be discharged.

- Improve data gathering on people with learning disability and/or autism in inpatient care.

- Facilitate engagement between commissioners, community based providers and inpatient care leads to support innovative and effective decision making around patient discharge and to overcome risk aversion.

- Remedy the shortage of appropriate housing provision with ring-fenced funding to build suitable homes for people with learning disability and/or autism.

7 February 2019

Appendix A – Life After Inpatient Units

Jackie’s Story – A chance at an ordinary life

For 22 years, Jackie was shut up – first, inside the South Ockendon institution in South Mimms where she first developed challenging behaviour and later at Heath Close, an NHS facility in Billericay. She has recently moved into her own home where she will live independently, supported to do so by staff from Dimensions. Her team manager Debbie takes up Jackie’s story: My first encounter with Jackie was an elderly lady sitting alone at a table, staring vacantly at a blank green wall. Bored beyond belief with nowhere to go, nothing to do and no-one to talk to. This would turn out to be typical of her days inside the hospital.

Since getting into a wheelchair during a bout of gout 5 years ago, she has barely left it at all. Not to sit on a sofa. Not to try to walk again. Not to make a cup of tea. Indeed, for the past five years Jackie wasn’t even been able to enter her own kitchen as her wheelchair wouldn’t fit.

Hospital staff did almost everything for Jackie – they made her tea, brought her meals, ran errands to the shop. This approach may masquerade as caring but over the years, it completely eliminated Jackie’s independence and confidence to do things for herself.

Jackie had become depersonalised – her day was nothing more than a set of tasks for hospital staff to do. The highlight of Jackie’s week was a pat- a-dog session that only lasts a few minutes. She developed serious anxiety around change, which lead to challenging behaviours… and so the vicious circle continued.

Then came Winterbourne View and pressure on CCGs and local authorities to get people out of institutional living. Following one failed placement (which Jackie won’t talk about) she was introduced to Dimensions.

It took 12 months to build relationships and develop trust to the point where Jackie couldn’t wait to leave. When I asked what she wanted from her new life, she replied:

“I want to be able to make my own cup of tea. I want to choose when I go to bed. I want there to be no health and safety posters in my house. I want to be able to hold my own front door key. I want my mum to visit lots. And, in August, I really want a party for my 60th birthday.”

Jackie now lives in her own home in the community Jackie had her initial priorities for her new life, as did we here at Dimensions. In the future we want to support her to walk again and to re- learn to cook.

She wants to get involved in the life of the beautiful community centre next door and access her long-forgotten savings accounts. She also wants to improve her health by registering with her local GP and dentist.

For someone as institutionalised as Jackie, life in supported living could well be overwhelming. But we think she’ll thrive. She has the capacity to make her own decisions, to take control of her life. And the early signs are promising.

The first thing she did on seeing her new living room was choose to get out of her wheelchair to sit in the armchair. That was pretty much the first time she’d left her wheelchair in five years.

Richard’s* Story – Swapping restraint for Positive Behaviour Support

• Richard’s support has been reduced from 3:1 to 1:1 full-time, leading to major savings for the local authority • There is now one incident of challenging behaviour every two months, down from one a week; Control and Restraint were removed from his support programme after a year • Richard is more included in his community, happier and with a better quality of life.

Richard is a young man who has a learning disability and violent challenging behaviour. When he joined Dimensions he moved from a secure unit with a 3:1 staffing ratio, costing around £200k per year. He now needs just 1:1 staffing and understands how to stop challenging behaviour triggers.

When Dimensions took over his support one of Richard’s goals was to become more independent. The team initially decided to focus on communication, decision making, and getting out and about. The team felt that making a difference in these areas would have the greatest overall impact on his quality of life.

Communication Because Richard’s physical aggression involved biting and hitting, staff focused on mitigating this risk. Unfortunately, this often led to a defensive team rather than a supportive team. They identified this as a problem and developed strategies to build a meaningful rapport with him.

Decision making Richard’s team understand that it is important to give him time and space so he can make his own decisions; they don’t place demands on him and don’t rush him. Richard now decides what time he wants to get out of bed, when he wants to eat and what he does.

Out and about Most triggers for Richard’s challenging behaviour occurred when he was out in the community. They developed a strategy to help him cope by encouraging him to say the word ‘home’ when he felt uncomfortable. Staff would immediately take him home.

This system took several months to establish but, following each incident, his support team would talk about it and suggest using ‘home’ as an avoidance method. Richard eventually tried saying ‘home’ to staff when he was uncomfortable and was clearly pleased when he was immediately taken home.

Richard has now made so much progress he is able to go on holiday. He loves the seaside and has been to Skegness and Scarborough.

*names have been changed to protect privacy. Written evidence from Mrs Carole Hagan (YDA0011)

Detention of children and adults with LDD, autism and PDA

1 This is totally unnecessary, why should these people be sectioned and detained because society doesn't know how else to care for them?

2 These people are being treated as prisoners -second class citizens.

3 Professionals -social workers, health visitors etc should be visiting places where people with challenging behaviour are being looked after well. to see how it's done.

4 There needs to be training on how not to be confrontational, how to de- escalate, how to spot triggers.

5 Putting people into detention is I suppose cheaper becuase then you don't need 1:1 24 hour care???????? Wrong reasons.

6 These people do not have mental health issues they shouldn't be sectioned.

7 They are modern day asylums -places to put people away -'sorted.'

8 Why are carers not asking the parents for advice?

C Hagan parent of a 28 year old with complex LDD and autism and challenging behaviour -who is in a good place.

5 February 2019

Written evidence from Mr Simon Buckingham (YDA0010)

Autism is a global pandemic due to the availability of diagnosis and as such one that Governments are unwilling to spend on in general. In the UK it is the same as most other places where there is little or no professional training for authorities to handle people on the spectrum.

As a Barrister and Solicitor of the High Court of New Zealand (and myself being on the Autistic Spectrum or AS) I have seen a number of cases where mens rea (known in the US and generally as criminal intent) is not taken into account. No doubt this Committee is aware of the issues in general but the question is how to deal with these issues specifically.

My submissions are not specifically aimed at young people as I think the issues and remedies cross all age groups in this matter. I am preparing this with children and young adults in the forefront of my mind but it applies as stated across the board I believe.

The first point is identification. It is undesirable generally for children to be diagnosed with anything by the Local Education Authorities (LEAs) as then more money has to be spent from already overstretched budgets. As such the first hurdle is even identifying people, children or adults, with neurodiversity issues such as AS. The legislation surrounding LEA obligations needs to be clarified and either more funding put in to allow for the uptake of diagnosis or an easing of the obligations once a diagnosis has been given. If this were done it may not alleviate the issues at the school level but it would make the job of the Police and legal professionals so much easier as people would then be able to identify themselves with AS issues and appropriate support be given.

Putting aside diagnosis, the next issue is around mens rea. Just because an alleged offender is AS does not mean that they have not knowingly and intentionally offended. The issue of mens rea needs to remain with the Court, but Lawyers need to be aware of these issues to be able to mount an appropriate defence, or plea in mitigation. As such, if someone is AS and is arrested, the Police can identify them from the voluntary information given by such people (and for that a laminated card would be ideal stating that the bearer is AS and asking for a support person or organisation to be contacted). It is not always possible to identify everyone by the nature of AS but this may go a long way. As such the Police and then the Lawyers can assess the mens rea element and decide if there is a case with an assessment of mens rea included as a factor. At this stage there are some cases that may be dropped with an understanding of AS issues, though many will still be too close to call I suspect. However, a relevant defence may then be built for the Court to consider.

The ideal situation at this stage, and one which the legal profession is slowly starting to consider is Alternative Dispute Resolution (ADR) with Restorative Justice (RJ). If someone who is on the AS has erred, the most appropriate way of dealing with this may often be a meeting between the victims, the offender and other stakeholders to discuss why the action referred to is incorrect and what the appropriate course of action could be. Such processes allow the victims to come to terms with the fact that often there is no evil intent, as well as teaching the offender the ‘rulebook’ way of dealing with such a situation. People on the Spectrum tend to live by defined, black and white rules, but as a result do not understand the rules as they are presented. Often the victims will not wish to proceed with an action having understood the motivation, and the offender learns the rules and so will not offend again. There may need to be a nominal punishment, but I will address sentencing in a moment.

The Court process is also too formal for AS people, causing excess stress and therefor unpredictable behaviours such as stimming, meltdowns (where the person breaks down emotionally) or even offensive outbursts. I would strongly recommend a Neurodiversity Court much like the Homeless Courts and Drug and Alcohol Courts set up successfully in New Zealand. The environment could be designed easily and without significant cost to be low in stimuli (such as dimmed lights, few people and quiet) meaning that the offender is put in a position where they can speak more comfortably and therefore answer any charges. This does not detract from the function of the Courts in any way but simply allows for the enshrined right to be heard. At present this is denied to many AS people.

In regards to sentencing, prison should even more be a last resort as the environment makes it so much worse for AS people. Most AS people will respond to non-custodial remedial sentences such as behaviour counselling and even community service. Only the radical elements will advocate for no punishment for AS people who have fairly been found to be guilty but in such situations the principles of sentencing should be considered carefully as stated in the Criminal Justice Act 2003 s142. Whilst unfortunately the first listed principle is punishment as opposed to prevention of future offending or rehabilitation, it is apparent that if the offending was unclear to the offender then RJ and ADR is holding true to all the principles except punishment, and even with punishment that does not exclude the ability to agree a remedy and punishment using the RJ processes. If conducted early on in proceedings, this would save Court time, stress for the victims, and a lot of money in regards to costs of being held on remand or even keeping tracks of offenders. It would also allow mens rea to be considered at an early stage and amends to be made immediately where appropriate.

As such to summarise I would state that this Select Committee needs to consider the following points in reference with people who are AS:

1. Awareness of diagnosis. 2. Consideration of mens rea. 3. ADR and RJ processes. 4. Allowing for a fair hearing with an appropriate environment. 5. Appropriate sentencing. As a final point I would urge and invite this Committee and Parliament as well as the organisations submitting to consider the phrase “Nothing about us without us”. It is well and good for groups to speak for the AS community but the important people to hear are those who are on the Autistic Spectrum, the carers and families, and indeed the professionals on the frontline of our justice system, especially if they also are AS people.

4 February 2019 Written evidence from Mr Chris Rayner (YDA0008)

I am the father of an autistic child who has been an in-patient in two psychiatric Assessment and Treatment Units (ATUs). My daughter first entered an ATU in July 2017, after reaching crisis point in the community with no other alternative provision available. Nearly 18 months later, she is still held at an ATU in Northamptonshire under Section 3 of the Mental Health Act. I would like to submit my response to the questions raised by your inquiry, as I can provide first-hand experience of the treatment these vulnerable children receive and feel compelled to act to raise awareness of the injustices that are present in their everyday lives. In my opinion, Winterbourne View could be happening again on a daily basis, in every ATU, and nobody would ever know. People are ignoring the chance to learn valuable lessons and improve the standard of care, and this nothing short of a national disgrace

Executive Summary The human rights of these young children are being breached on a regular basis They are languishing in ATUs for prolonged periods of time, receiving neither assessment or treatment and in some cases, denied even the most basic nursing care ATUs continue to abuse vulnerable autistic children with the use of deliberate prone restraint, in blatant disregard of Department of Health guidelines resulting in physical injury and further psychological trauma They represent brutal regimes that restrain at will and act with impunity to regulators and the rule of law ATUs are failing to report injuries from prone restraint incidents as safe guarding concerns LADO initiated investigations are carried out by the ATUs themselves – they ‘mark their own homework’ The powers of inspection are inadequate, and regulators are blind to serious incidents ATUs present more opportunities for learned behaviour resulting in further deterioration of mental health There is no coordinated joint working in the community causing the inevitable crisis requiring ATU admission

Factual Information and Evidence

For the points raised in the executive summary, I present the following factual information and evidence.

1) My daughter was first admitted to an ATU in July 2017 (due to serious self- harm, and with a known diagnosis of autism). During the 9 months she was an in-patient, other than anti-depressant medication, the ATU was unable to offer any treatment - no therapy and little or no intervention. It was a prison holding cell, designed purely to medicate, stabilise and keep safe. Her underlying mental health issues were ignored. She picked up learned behaviours from other patients and gained no appropriate coping skills whatsoever. 2) The ATU failed to keep her safe resulting in a number of hospital visits. Basic nursing care for her physical (self-harm) wounds was not provided (dressings left dirty and unchanged for days resulting in infection requiring repeated cycles of antibiotics). After a self-harm referral to A&E, analgesic medication was withheld for a number of days despite clear instructions from the hospital doctors. 3) There was clear evidence of inappropriate conversations between key members of nursing staff and my daughter, who seemed to have no appreciation or understanding of her autistic diagnosis. 4) My daughter wasted 9 months of her life in an ATU that was not fit for purpose. She missed critical aspects of her education, was kept under lock and key and denied treatment making, no progress towards recovery. She was denied her personal liberty and dignity, being watched 24x7 in every aspect of her daily life - in the shower, on the toilet and in her bedroom. It was utterly devastating and traumatising for her. 5) In April 2018, she was moved to another ATU which specialised in DBT therapy, where she has remained ever since. The regime at this ATU is much stricter. She spends extended periods of time with no access to fresh air, sunshine or exercise. At times her room has been completely stripped bare (only a duvet on her bed). Similarly, she is often watched 24x7 (whilst sleeping, on the toilet, in the shower). She has no personal phone to text her family and access to a shared TV only (she’s autistic, so won’t sit with others in the day room anyway). 6) Between 11th June and 8th November 2018, she was physically and forcibly restrained 18 times, including use of prone restraint on a hard floor. Brutal, frightening and traumatic for a vulnerable autistic child (clearly in fight or flight response). During the use of prone restraint, she sustained physical injuries that were neither reported to me or raised as safe guarding concerns to the LADO. The DoH guideline provide clear and explicit instructions against the use of prone restraint, offering no mitigating circumstances or exceptions. NHS England appear to agree (ref. evidence from Ray James to your inquiry 9/1/19). Yet this ATU believe that evidence of a written policy allows them to continue to use it with total impunity. As a direct result of this, the Police refused to fully investigate or make any charges. 7) All incidents of prone restraint have happened in an area known (by the ATU) to be out of ‘clear’ CCTV coverage. My daughter was deliberately moved to one of these areas, before restraint was applied. This conveniently removes all evidence or audit trail, leaving investigating authorities (commissioners, regulators, inspectors or law enforcement) unable to objectively and independently assess what really happened. Short of a whistleblowing documentary (e.g. Panorama, Channel 4 Dispatches) this is Winterbourne View all over again! Investigation reports from the ATU’s Operational Lead and the Police remain conflicting, incomplete and inconsistent. 8) My daughter has been stripped naked in front of male security staff (whilst being changed into security clothing). Behaviour which is wholly inappropriate, degrading and totally unacceptable. 9) Nursing teams make poor judgment calls on the need for qualified medical intervention and nursing care is unavailable at the weekends.

Response to the Inquiry Questions Q1: Whether the Government’s Transforming Care programme, which aims to significantly reduce the number of those detained inappropriately, has been successful and if not, why not. No, I don’t believe it is working. There is no joint working in local areas across education, social care and the NHS to prevent the need for admission in the first place. In addition, secondary schools have little or no understanding of some of the conditions these young people have (e.g. attachment disorder, autism, PDA etc.) and are reluctant to invest in training. Appropriate care, early intervention and assessment are not available in the community. There is either a significantly long waiting list to get help, or no assessment/intervention at all until a crisis point is reached, by which time it is too late, and the damage has been done. Once admitted to an ATU, it’s impossible to get a young person out. My daughter’s first ATU was unable to either assess or treat her symptoms in over 9 months. She has now spent 18 months in hospital and is making absolutely no progress – discharge has not even been considered yet. There is clearly little incentive to expedite discharge on the ATUs part (no doubt due to the revenue stream it generates). Once discharge is considered, nobody seems to have any confidence that her complex needs can even be met in the community. So as seems to happen all too often now, her discharge will no doubt be delayed even longer until the local authority can work out what to do.

Q2: If it has not been successful what needs to be done to ensure that the numbers detained are reduced more rapidly. Try and get better joint working at the local level and prevent ATU admission in the first place. More investment in the education of secondary schools on the conditions these children have. This would enable them to work more effectively with social care and the NHS, both to identify the issues earlier, but more importantly to provide appropriate intervention and support to the child in the educational environment Tackle the funding and resource issues for local CAHMS units to reduce the waiting time for early intervention and support

Q3: Whether the human rights of children and young people with learning disabilities and/or autism who are detained in mental health hospitals are being breached. Yes, they are being breached on a regular basis – see above evidence section

Q4: If, so how are they breached and what needs to be done to better protect them? How – see above evidence section What needs to be done and recommendations Clarify and tighten regulations to stop the use of prone restraint completely Better empower inspectors to hold organisations to account, by regulating that restraint is carried out in full view of CCTV to ensure compliance with guidelines, procedures and the law Ensure that LADO and any other investigations involving safe guarding issues, are carried out by an independent organisation

1 February 2019 Written evidence from Mr James Costin (YDA0007)

Personally I have not been detained by mental health but the threats are real an the treatments of us in day to day life is bad enough but to be discriminated an be treated as a sub human my whole life I fear the day I maybe sent to one of these hospitals as we are rarely given a chance by society to thrive but to have our freedom to be removed is a fear for all of us as people struggle to deal with us an some cause the problems by triggering us by accident or by purpose.

31 January 2019 Written evidence from Anonymous 1 (YDA0001)

In 2005, E ran away from a paedophile age 15. (***) ). The father of her brother. She was in PJ's, terrified, on the streets, too scared to go back "home." mum - a functioning alcoholic - blamed E because she was jealous, & to punish E, her mum told the trainee social worker (sent by Children's Services) (CS) E was "beyond parental control." Lies about E (to cover the truth) were instantly believed by the sw. Despite a "Duty of Care" NO investigation was done.

E was homeless, police working with CS told other parents etc "you are not allowed to help a runaway," so E was forced to endure a long nightmare on the streets, or go back "home."

Eventually E was captured by the sw & locked on her own inside a disused children's home with no activities. After approx 2 months, the sw said E thumped her. The sw charged E. E was sent to at least 2 different Secure Units in UK.

Another inmate at the secure unit told E to self harm (SH) to PROTEST mistreatment. Age 17, before handover to adult services, the council had E sectioned under the MH Act for her "own protection" due to SH'ing.

A care manager was appointed - a nurse specialising in Learning Difficulties (employed by a Trust in area where E had been residing). Same (NEGLIGENT) "care" manager is still in charge 8 years later - deciding E's placements etc, all funded by NHS.

E's mum has determined E's "care plan" from the getgo - all intended to punish E.

(How can the system intended to protect & safeguard victims of abuse that are traumatised, put the abuser in charge of way cared for??)

E's mum was secretly telling E to keep her mouth shut - not tell anyone about her drinking - E scared, stayed silent to protect her two younger(siblings))Staff did not know mum was abusing E. Staff put pressure put on E to live with her mum, or stay locked away from everybody in a "out of area" psychiatric hospital.

E's SH'ing / protests got worse. E cut her arms, legs, stomach, face, neck. All protests ignored by staff & "care" manager. It is on record that staff "allowed" E to SH. (That makes a mockery of sectioning for protection). (Why do NHS pay for a patient to be "safeguarded" by having "one to one care" meaning patient is never left alone, then do or say nothing when patient for years presents covered in open & weeping cuts? Why do NHS Funders not ask questions, such as HOW can that happen? Why do funders not stop funding those places knowing how bad their failures are?)

E transferred to 4th psychiatric hospital age 25 , restrained there via unnecessary repeated use of a cast put forcibly on each of E's arms - totally immobilising all movements, for a period of 6 months. Treatment was BARBARIC.

Formal complaints made to CQC but no inspection was done until after E was sent back to where shewas diagnosed & sectioned age 17. CQC report refers to E as "one difficult patient." Victim blaming. Hospital exonerated! No mention of illegal use of casts on both arms.

Because E complained (about force feeding of anti psychotic med Cloxapine that caused her weight to double so she was unrecognisable, causing diabetes, risking heart attack / strokes (even though E had never had a psychotic episode), punishments were increased! E went from " low" security to high security, she was put in paper suits, force fed and denied visitors.

E says "the only way out is in a body bag."

I am (grandmother). I tried to help E. I was aware staff forcibly injected E with Acuphase before tribunal meetings, so E appeared mentally unwell during those, manipulating those to ensure E stayed locked up.

I told E's "care" manager & the hospital's sw the truth about E's WRONGFUL INCARCERATION - that E should never have been blamed. Instead of helping E, the regime in charge censored E's file held at CS, deliberately alienated me & isolated E.

(I only found out where E has been incarcerated by accident - via friends etc - officially nobody wanted me to know a thing).

E, to date, still does not a Nearest Relative appointed. E's mum will not allow anyone to help E or believe in E, she poisons everyone's attitude.

Solicitors seem to only want the Legal Aid payments & do minimum to get those.

E has no independent advocate - the advocate available works for the hospital, helping the regime so not their lucrative apple cart is not upset. E is their possession worth £13,000 a week to her captors in NHS fees. Profits are all that matters to them.

There is no "recovery" or rehabilitation, E has never been assessed for release on a Community Care order (even when E was promised Supported Housing). E is told "There is a shortage of supported housing" to explain why only empty promises are made.

There are no activities. E has had no education. E is not allowed any fresh air, or exercise. There are no organised group outings. E is kept "on ward" 24/7. Section 17 leave is denied in case E SH's or absconds. E says staff make out she is a risk but E would never SH in public, & the "care" manager () (***) is allowed to take E out shopping at Dunelm or wherever, unsupervised by other staff !!! so that makes a nonsense out of the "risk" of E running off.

Records are not updated. E does sign care plans written by staff failing to mention even one thing E wants. Inaccurate information is repeatedly cited by staff only pretending to care, to make out staff are rightful whilst patients & relatives are in the wrong.

After suicide attempts (to escape the dreadfully insulting & humiliating pains of unfair incarceration) staff are not allowed to give E a hug - they perform same as text books, & nobody talks nicely or kindly to E either.

For example: E was forced to wear a wet / damp open security gown, with no underwear (in front of male nurses). E was not allowed a duvet, pillow, bedsocks, teddy or photo of loved ones. The heating in E's room was turned off (in February). E was left on her own to shiver (after staff told E off for upsetting them & causing them extra work), and E stayed in that CRUEL HEARTLESS condition for 4 months. Formal complaints (dealt with by those complained about) were upheld, but ignored.

Staff dismiss complaints about the extremely UNHEALTHY non helpful lifestyle arguing E can get hair & nails done (by other patients). No Timetable was produced by staff. Inspection of ward by relatives is not allowed.

To hide true facts of E's case, & stop official NHS complaints via advocacy organisation , the Data Protection Act is used & misused. "You have no rights." " You do not have permission." Staff run slick TORTUOUS operations very obviously slyly aware how to pressure inpatients to justify 3 or 4 trained male heavies attacking E - jumping on top of E , to restrain & inject her in the bum. Done to silence the poor patients so there can be no dissent. E says staff know where the cameras are...

Abandoned, at the mercy of sadists! Nobody on the outside can do anything to help E because we are blocked.

All E is suffering is not due to E having any illness, it is solely because E has strong desire for JUSTICE & the uncaring authoritative regime in charge of her health & welfare has opted to imprison E to COVER UP the terrible mistakes they have made!

I wish E had been sent to prison. E would have had some fresh air, access to education, and would have been free'd about 10 years ago. As things are, for actually doing nothing wrong, E’s life is ruined, E is scarred & not even allowed to put Savlon on skin, & is blamed for everything that has gone wrong for E .

Without intervention E has no hope in hell of ever getting released. Staff were arguing E is now institutionalised whilst E was on the phone to me begging me to help E get out.

Nobody is allowed to help E!

How CRAZY is that?

11 January 2019 Written evidence from Anonymous 2 (YDA0004)

I am concerned that godson has been detained at a Mental Health Institution for more than 3 years under a Forensic Sectioning for a Case that was never brought to a Law Court.

Although he has a medical history of mental health illness, in the past, help from the Council run hospitals was compassionate and patients felt they could find support through the hospitals, even when once again living back at home. Now he is subjected to the rule of privately run hospitals who are not so keen to allow the same freedom and who appear to charge our Government up to £730,000 annually for each patient. What type of business plan do these hospitals adhere to when only allowing patients to leave after 3, 5, or more years?

I have known my godson since he was born and watched him develop from a child to a young man and we remain in constant contact. I have visited him at certain hospitals and through phone calls have tried to offer support and practical advice as to how to deal with the overwhelming negative and fear provoking situations that patients seem to suffer daily within the privatised mental health hospitals. On the occasions that I have sat in on a meeting with his psychiatrist and various other mental health workers, I have strongly felt that if placed in godson’s) daily situation of not knowing of a release date, being marked as too elated one day for feeling happy, to being recorded as being manic when each day is spent dealing with a mixed bunch of other mentally disturbed patients, that I would become extremely anxious and fearful, as would any ordinary person.

Let me also say that I know of too many young adults, especially males, but also females who have told me of awful abuse to their civil rights in these institutions. It seems that just like the retirement homes for the elderly have been catalogued by the likes of TV Panorama to show the level of abuse to the patients by staff members, this type of investigation needs to be done now with these private hospitals.

My godson has huge family and friends' support and yet is still being denied the right to outpatient independent living and is forced to feel totally institutionalised by his enduring incarceration. The medication treatment has left him terribly obese, losing all his teeth and then being left for months before ill-fitting dentures were available. His self esteem has been brutalised and I would never call these institutions hospitals because the patients' health never seems to improve.

This is money being made at the expense of human misery and although I believe some of the patients are required to remain in secure wards, my godson is most definitely not one of them.

I am actively researching these American owned companies to find a way of exposing the atrocities taking place behind their hospital doors. I have been pleased to find newspapers such as The Daily Mail and The Guardian are also investigating the huge rise in patients both young and old, suffering with mental disorders being detained for longer periods within these hospitals.

Independent home care would be far more beneficial for my godson, and cost an awful lot less to the taxpayer.

I am not a professional but it doesn't take much common sense to see how damaging the long term effects of his medication are to his physical and mental states and to wonder why such treatments are pursued when more holistic approaches, such as acupuncture, are proving to be successful in treating patients' individual needs.

I am hoping that whoever reads this will appreciate that my godson is just one of many patients questionably detained when the family support is available and yet the same family have no rights as to choice of treatment or release for their loved one.

23 January 2019

Written evidence from Anonymous 41 (YDA0015)

1. Summary

1.1. My son AP, is (19) years old. He has diagnoses of severe autism, severe learning disabilities and epilepsy.) He is non-verbal. He was discharged last month having spent 16 months detained under Section 3 of the Mental Health Act in an ATU 370 miles from his home in (***).

1.2. AP has received no treatment requiring a hospital environment during his detention. His Responsible Clinician stated there was nothing (the responsible clinician) could provide and said AP needed a robust community placement with access to an excellent speech and language therapist and some input from psychology (for Positive Behaviour Support).

1.3. Until admission AP had not been away from me for more than two days. The distance and geographic position of the ATU in (a rural county) made visiting very difficult. My husband and I travelled to see our son every other week. It was an eight-hour drive in each direction. Our usual routine was to drive to (***) on a Sunday, stay overnight in a Travelodge in (***), drive to the ATU on the Monday morning, visit our son for approximately two hours and then drive home. AP has two younger siblings and my husband and I both work. These trips therefore impacted significantly on the family. There was also a large financial impact. Each trip cost around £250 – (£100 car hire, £100 fuel, £50 Travelodge). I recently made a request to (local CCG)) for support to visit under as recommended under the MHA Code of Practice (paragraphs 14.85 and 17.4), but this was refused.

1.4. AP needed to see us. He is non-verbal and therefore communicates largely via visual signals, touch and smell. Opportunities to communicate were much reduced during admission and this impacted on our relationship. AP was always been very close to his wider, extended family. The only family he saw during admission was my husband and I. Since discharge we have been having to manage reintroductions to family carefully to avoid overwhelming him.

1.5. Article 8 of the Human Rights Act provides AP with the right to respect for private and family life. This includes the right not to be separated up from his family and to have and maintain contact. I believe this right was not protected (local CCG), both in placing AP

1 Submission to the Joint Human Rights Committee by (***) (Parent of child) who was detained in an ATU, writing in personal capacity so far from family and in refusing support for us to visit and maintain our relationship.

1.6. During his time in the ATU AP was frequently restrained. Supine restraint was common and it appears that he was also occasionally prone restrained. He was given frequent PRN oral medication and we know he was given an IM on at least one occasion. This IM may have been avoided had a conversation with us taken place at the time. We were told, after the event, that it was necessary as AP was extremely distressed for no reason. In fact, it was exactly a year since admission and he may have been reassured with an appropriate social story and reassurance that he would be going home once accommodation had been arranged.

1.7. In the community we use an approach that aims to support individuals in distress. This uses no static holds and takes into account the emotional and sensory needs of the individual. In the years we have been using this approach with AP we have never felt the need to use tight, restrictive restraints or floor restraint.

2. Reason for Admission

2.1. AP lived at home until (month) 2016, when he was 17 years old. By this time he required 24 hour 2:1 care and it was decided the best way to provide this was for AP to move into his own flat in a residential home five miles from home. This was an adult service that had agreed to take AP early with a view to him staying there into adulthood. He was able to continue to attend his special school and maintain very regular and meaningful family contact.

2.2. Transition is recognised to be a difficult time for young people and for this reason a CTR was held in (month)2017. This was extremely positive and the panel noted how well we all worked together and how positive AP’s life was. In (month) 2017 the home was bought by a new, large, hedge fund backed corporate. This was around the same time that AP developed health issues (repeated UTI’s) which took a long time to access appropriate medical treatment. For example, he had to wait 5 months for a blood test. In (month) 2017 AP had a negative reaction to antibiotics (we believe they made him nauseous) and his behaviour escalated to very difficult levels for a period of five days. He remained unsettled after this but his behaviour was at levels that could be regarded as not unusual for the service in which he was supported.

2.3. However, the following month the (excellent) manager of the service was suspended and AP was served with 13 days notice. We requested an extension and a few weeks were agreed but in mid September AP was made homeless. He initially returned to us, but this could only be a temporary measure as his younger siblings had to move to their grandparents’ house in order to allow AP’s return home. The community team tried to arrange an emergency community placement near our home but with very short notice it was extremely difficult to find providers with the right skills and training and this package fell apart within hours. Therefore, one morning in late (month) 2017 AP went to school as usual. The emergency providers had withdrawn that morning and so there was no-one to support his after school. The community team had run out of options and after returning from school he was sectioned under the Mental Health Act. At 6.30pm he was placed in a van and driven to the ATU arriving at some stage in the middle of the night.

2.4. During his time at the ATU AP was titrated off diazepam and his risperidone dose was reduced. This is positive but could have been done in the community. He was on a locked ward and we were never allowed onto the ward. We knowAP was subjected to frequent restraints, including occasional use of IM injection and there was limited understanding within the staff team of his needs. The problem for AP was that he was situated in a hospital, with no psychiatric treatment needs and in an environment where it was very difficult to provide the support he did require (consistency, staff who know him well, strong relationships with staff, frequent outside activities, a calm quiet space that was not communal).

2.5. When AP was sectioned we were told it would be for 3 months to allow the community team time to pull a package together. In conjunction with the community team we were able to quickly find an excellent support provider but finding suitable housing was difficult. (the local) CCG submitted a capital bid to NHS England and this provided money for AP to have his own house. This is now being managed by (organisation name). Please note we were lucky to fall under v (the local) CCG as they have been very proactive at accessing the NHS England capital scheme – many CCG’s have not.

2.6. AP returned to his own house, with an excellent support team in (month) 2019. However, he spent 16 months incarcerated in an ATU far from home and is showing significant levels of institutionalisation and has suffered extended trauma during that time.

3. Breach of Human Rights

3.1. During this time we believe AP’s human rights were breached both in terms of the distance he was placed from his family and the restrictive practice he was subjected to.

4. Barriers to Preventing Inappropriate Detention 4.1. AP’s case highlights common barriers in enabling people to return to, or remain in the community: 4.1.1.Accessing appropriate housing 4.1.2.Profit focussed providers. AP would likely have never been admitted to an ATU had his previous providers not been taken over by a large corporate. Small, specialist providers are better at supporting someone with complex needs who requires a very bespoke package but the reduction in funding for the industry makes it difficult for providers to survive without economies of scale. 4.1.3.Money in the wrong place. My son’s ATU placement cost £12,000 a week. His community placement is less than half the weekly cost. Ideally there would be more money in the community to enable additional training and staff to be paid more (so reducing turnover). I would suggest that providers have to sign a contract with commissioners agreeing a particular minimum wage for staff.

7 January 2019 Written evidence from Anonymous 3 (YDA0006)

My views as a parent of an autistic daughter with no associated learning disability

The questions of interest are:

• Whether the Government’s Transforming Care programme, which aims to significantly reduce the number of those detained inappropriately, has been successful and if not, why not.

No – my daughter has been detained under the mental health act for 2 years, since she was 14). Her needs had been missed, she as completely failed by her school and local services and ended up in expensive, unaccountable private hospitals, miles from home, who use inadequately trained agency staff to look after our most vulnerable young people.

The CeTR reviews have no power to effect change or ensure correct provision – it feels like a tick box exercise. After one, because the hospital knew they were not prepared to make the adjustments recommended in the expert report, they sent my daughter to a PICU (completely unsuitable for anyone with ASC) 300 miles away from home, with no notice to us as parents. The receiving consultant said they lied on the form and allowed us to take her home within 48 hours, until a suitable provision could be found. The investigation into this is still ongoing.

She has been in 5 mental health settings, all of whom do not understand autism and who are quite happy to say ‘we can’t meet her needs’ even though the majority of the females in these places are on the spectrum and their mental health needs and extreme behaviours are as a result of unmet needs and masking for most of their lives.

Our daughter went into hospital in (month) 2017 with a few cuts and now is covered in scars, has learned all the ways she can harm herself , including swallowing batteries and staples, has a huge ugly scar from a botched operation to remove metal items embedded in her arm (still one in there) and is very overweight, which had had a really detrimental effect on her mental and physical health. She has been restrained by agency staff - strangers who have caused the incidents in the first place through inappropriate care and sometimes cruelty. She has been neglected (hidden camera footage of this) and taken to hospital numerous times even when under 24 hour supervision. She has been told she is naughty and badly behaved, when she is suffering from disturbing voices and extreme anxiety. She is on a cocktail of medication. She was put in seclusion for 11 days in an NHS CAMHS provision because ‘we don’t DO autism.

There is no service (health, school or otherwise) in the entirety of (County) that can meet her need, apparently. This is a girl who was on track for maximum grades in all GCSEs and who have never been aggressive or even got a ‘behaviour point’ at school.

The communication with parents and carers is truly appalling.

• If it has not been successful what needs to be done to ensure that the numbers detained are reduced more rapidly. Get the right autism provision for girls on the spectrum in place NOW. Get service to stop arguing about whose responsibility these vulnerable, damaged young people are, and actually work together to get real EFFECTIVE support and help.

• Whether the human rights of children and young people with learning disabilities and/or autism who are detained in mental health hospitals are being breached.

Yes.

• If, so how are they breached and what needs to be done to better protect them? We have witnessed wilful failure to put in place training and support to meet complex needs.

Restraint is used far too much and when unnecessary.

Staff are not even basically trained (hidden camera evidence of this) or supported

Seclusion is used too frequently and for too long, instead of actually supporting needs.

Threatening scared and vulnerable children with the Police and big posters up to that effect had a massive impact on our daughter. She was terrified. One member of staff told her ‘you will get a criminal record and no-one will employ you’. After that, my daughter tried to ligature. Some staff are excellent but too many are temporary, culturally different (they think ‘these children should be whipped’ and have a complete lack of compassion or undertstanding.

Our daughters broken and we are broken – we thought that finally getting a bed in a hospital would be the start of support and help and recovery – we were wrong.

31 January 2019 Written evidence from Anonymous 41 (YDA0015)

1. Summary

1.1. My son AP, is (19) years old. He has diagnoses of severe autism, severe learning disabilities and epilepsy.) He is non-verbal. He was discharged last month having spent 16 months detained under Section 3 of the Mental Health Act in an ATU 370 miles from his home in (***).

1.2. AP has received no treatment requiring a hospital environment during his detention. His Responsible Clinician stated there was nothing (the responsible clinician) could provide and said AP needed a robust community placement with access to an excellent speech and language therapist and some input from psychology (for Positive Behaviour Support).

1.3. Until admission AP had not been away from me for more than two days. The distance and geographic position of the ATU in (a rural county) made visiting very difficult. My husband and I travelled to see our son every other week. It was an eight-hour drive in each direction. Our usual routine was to drive to (***) on a Sunday, stay overnight in a Travelodge in (***), drive to the ATU on the Monday morning, visit our son for approximately two hours and then drive home. AP has two younger siblings and my husband and I both work. These trips therefore impacted significantly on the family. There was also a large financial impact. Each trip cost around £250 – (£100 car hire, £100 fuel, £50 Travelodge). I recently made a request to (local CCG)) for support to visit under as recommended under the MHA Code of Practice (paragraphs 14.85 and 17.4), but this was refused.

1.4. AP needed to see us. He is non-verbal and therefore communicates largely via visual signals, touch and smell. Opportunities to communicate were much reduced during admission and this impacted on our relationship. AP was always been very close to his wider, extended family. The only family he saw during admission was my husband and I. Since discharge we have been having to manage reintroductions to family carefully to avoid overwhelming him.

1.5. Article 8 of the Human Rights Act provides AP with the right to respect for private and family life. This includes the right not to be separated up from his family and to have and maintain contact. I believe this right was not protected (local CCG), both in placing AP

1 Submission to the Joint Human Rights Committee by (***) (Parent of child) who was detained in an ATU, writing in personal capacity so far from family and in refusing support for us to visit and maintain our relationship.

1.6. During his time in the ATU AP was frequently restrained. Supine restraint was common and it appears that he was also occasionally prone restrained. He was given frequent PRN oral medication and we know he was given an IM on at least one occasion. This IM may have been avoided had a conversation with us taken place at the time. We were told, after the event, that it was necessary as AP was extremely distressed for no reason. In fact, it was exactly a year since admission and he may have been reassured with an appropriate social story and reassurance that he would be going home once accommodation had been arranged.

1.7. In the community we use an approach that aims to support individuals in distress. This uses no static holds and takes into account the emotional and sensory needs of the individual. In the years we have been using this approach with AP we have never felt the need to use tight, restrictive restraints or floor restraint.

2. Reason for Admission

2.1. AP lived at home until (month) 2016, when he was 17 years old. By this time he required 24 hour 2:1 care and it was decided the best way to provide this was for AP to move into his own flat in a residential home five miles from home. This was an adult service that had agreed to take AP early with a view to him staying there into adulthood. He was able to continue to attend his special school and maintain very regular and meaningful family contact.

2.2. Transition is recognised to be a difficult time for young people and for this reason a CTR was held in (month)2017. This was extremely positive and the panel noted how well we all worked together and how positive AP’s life was. In (month) 2017 the home was bought by a new, large, hedge fund backed corporate. This was around the same time that AP developed health issues (repeated UTI’s) which took a long time to access appropriate medical treatment. For example, he had to wait 5 months for a blood test. In (month) 2017 AP had a negative reaction to antibiotics (we believe they made him nauseous) and his behaviour escalated to very difficult levels for a period of five days. He remained unsettled after this but his behaviour was at levels that could be regarded as not unusual for the service in which he was supported.

2.3. However, the following month the (excellent) manager of the service was suspended and AP was served with 13 days notice. We requested an extension and a few weeks were agreed but in mid September AP was made homeless. He initially returned to us, but this could only be a temporary measure as his younger siblings had to move to their grandparents’ house in order to allow AP’s return home. The community team tried to arrange an emergency community placement near our home but with very short notice it was extremely difficult to find providers with the right skills and training and this package fell apart within hours. Therefore, one morning in late (month) 2017 AP went to school as usual. The emergency providers had withdrawn that morning and so there was no-one to support his after school. The community team had run out of options and after returning from school he was sectioned under the Mental Health Act. At 6.30pm he was placed in a van and driven to the ATU arriving at some stage in the middle of the night.

2.4. During his time at the ATU AP was titrated off diazepam and his risperidone dose was reduced. This is positive but could have been done in the community. He was on a locked ward and we were never allowed onto the ward. We knowAP was subjected to frequent restraints, including occasional use of IM injection and there was limited understanding within the staff team of his needs. The problem for AP was that he was situated in a hospital, with no psychiatric treatment needs and in an environment where it was very difficult to provide the support he did require (consistency, staff who know him well, strong relationships with staff, frequent outside activities, a calm quiet space that was not communal).

2.5. When AP was sectioned we were told it would be for 3 months to allow the community team time to pull a package together. In conjunction with the community team we were able to quickly find an excellent support provider but finding suitable housing was difficult. (the local) CCG submitted a capital bid to NHS England and this provided money for AP to have his own house. This is now being managed by (organisation name). Please note we were lucky to fall under v (the local) CCG as they have been very proactive at accessing the NHS England capital scheme – many CCG’s have not.

2.6. AP returned to his own house, with an excellent support team in (month) 2019. However, he spent 16 months incarcerated in an ATU far from home and is showing significant levels of institutionalisation and has suffered extended trauma during that time.

3. Breach of Human Rights

3.1. During this time we believe AP’s human rights were breached both in terms of the distance he was placed from his family and the restrictive practice he was subjected to.

4. Barriers to Preventing Inappropriate Detention 4.1. AP’s case highlights common barriers in enabling people to return to, or remain in the community: 4.1.1.Accessing appropriate housing 4.1.2.Profit focussed providers. AP would likely have never been admitted to an ATU had his previous providers not been taken over by a large corporate. Small, specialist providers are better at supporting someone with complex needs who requires a very bespoke package but the reduction in funding for the industry makes it difficult for providers to survive without economies of scale. 4.1.3.Money in the wrong place. My son’s ATU placement cost £12,000 a week. His community placement is less than half the weekly cost. Ideally there would be more money in the community to enable additional training and staff to be paid more (so reducing turnover). I would suggest that providers have to sign a contract with commissioners agreeing a particular minimum wage for staff.

7 January 2019 Written evidence from Anonymous 3 (YDA0006)

My views as a parent of an autistic daughter with no associated learning disability

The questions of interest are:

• Whether the Government’s Transforming Care programme, which aims to significantly reduce the number of those detained inappropriately, has been successful and if not, why not.

No – my daughter has been detained under the mental health act for 2 years, since she was 14). Her needs had been missed, she as completely failed by her school and local services and ended up in expensive, unaccountable private hospitals, miles from home, who use inadequately trained agency staff to look after our most vulnerable young people.

The CeTR reviews have no power to effect change or ensure correct provision – it feels like a tick box exercise. After one, because the hospital knew they were not prepared to make the adjustments recommended in the expert report, they sent my daughter to a PICU (completely unsuitable for anyone with ASC) 300 miles away from home, with no notice to us as parents. The receiving consultant said they lied on the form and allowed us to take her home within 48 hours, until a suitable provision could be found. The investigation into this is still ongoing.

She has been in 5 mental health settings, all of whom do not understand autism and who are quite happy to say ‘we can’t meet her needs’ even though the majority of the females in these places are on the spectrum and their mental health needs and extreme behaviours are as a result of unmet needs and masking for most of their lives.

Our daughter went into hospital in (month) 2017 with a few cuts and now is covered in scars, has learned all the ways she can harm herself , including swallowing batteries and staples, has a huge ugly scar from a botched operation to remove metal items embedded in her arm (still one in there) and is very overweight, which had had a really detrimental effect on her mental and physical health. She has been restrained by agency staff - strangers who have caused the incidents in the first place through inappropriate care and sometimes cruelty. She has been neglected (hidden camera footage of this) and taken to hospital numerous times even when under 24 hour supervision. She has been told she is naughty and badly behaved, when she is suffering from disturbing voices and extreme anxiety. She is on a cocktail of medication. She was put in seclusion for 11 days in an NHS CAMHS provision because ‘we don’t DO autism.

There is no service (health, school or otherwise) in the entirety of (County) that can meet her need, apparently. This is a girl who was on track for maximum grades in all GCSEs and who have never been aggressive or even got a ‘behaviour point’ at school.

The communication with parents and carers is truly appalling.

• If it has not been successful what needs to be done to ensure that the numbers detained are reduced more rapidly. Get the right autism provision for girls on the spectrum in place NOW. Get service to stop arguing about whose responsibility these vulnerable, damaged young people are, and actually work together to get real EFFECTIVE support and help.

• Whether the human rights of children and young people with learning disabilities and/or autism who are detained in mental health hospitals are being breached.

Yes.

• If, so how are they breached and what needs to be done to better protect them? We have witnessed wilful failure to put in place training and support to meet complex needs.

Restraint is used far too much and when unnecessary.

Staff are not even basically trained (hidden camera evidence of this) or supported

Seclusion is used too frequently and for too long, instead of actually supporting needs.

Threatening scared and vulnerable children with the Police and big posters up to that effect had a massive impact on our daughter. She was terrified. One member of staff told her ‘you will get a criminal record and no-one will employ you’. After that, my daughter tried to ligature. Some staff are excellent but too many are temporary, culturally different (they think ‘these children should be whipped’ and have a complete lack of compassion or undertstanding.

Our daughters broken and we are broken – we thought that finally getting a bed in a hospital would be the start of support and help and recovery – we were wrong.

31 January 2019 Written evidence from Anonymous 41 (YDA0015)

1. Summary

1.1. My son AP, is (19) years old. He has diagnoses of severe autism, severe learning disabilities and epilepsy.) He is non-verbal. He was discharged last month having spent 16 months detained under Section 3 of the Mental Health Act in an ATU 370 miles from his home in (***).

1.2. AP has received no treatment requiring a hospital environment during his detention. His Responsible Clinician stated there was nothing (the responsible clinician) could provide and said AP needed a robust community placement with access to an excellent speech and language therapist and some input from psychology (for Positive Behaviour Support).

1.3. Until admission AP had not been away from me for more than two days. The distance and geographic position of the ATU in (a rural county) made visiting very difficult. My husband and I travelled to see our son every other week. It was an eight-hour drive in each direction. Our usual routine was to drive to (***) on a Sunday, stay overnight in a Travelodge in (***), drive to the ATU on the Monday morning, visit our son for approximately two hours and then drive home. AP has two younger siblings and my husband and I both work. These trips therefore impacted significantly on the family. There was also a large financial impact. Each trip cost around £250 – (£100 car hire, £100 fuel, £50 Travelodge). I recently made a request to (local CCG)) for support to visit under as recommended under the MHA Code of Practice (paragraphs 14.85 and 17.4), but this was refused.

1.4. AP needed to see us. He is non-verbal and therefore communicates largely via visual signals, touch and smell. Opportunities to communicate were much reduced during admission and this impacted on our relationship. AP was always been very close to his wider, extended family. The only family he saw during admission was my husband and I. Since discharge we have been having to manage reintroductions to family carefully to avoid overwhelming him.

1.5. Article 8 of the Human Rights Act provides AP with the right to respect for private and family life. This includes the right not to be separated up from his family and to have and maintain contact. I believe this right was not protected (local CCG), both in placing AP

1 Submission to the Joint Human Rights Committee by (***) (Parent of child) who was detained in an ATU, writing in personal capacity so far from family and in refusing support for us to visit and maintain our relationship.

1.6. During his time in the ATU AP was frequently restrained. Supine restraint was common and it appears that he was also occasionally prone restrained. He was given frequent PRN oral medication and we know he was given an IM on at least one occasion. This IM may have been avoided had a conversation with us taken place at the time. We were told, after the event, that it was necessary as AP was extremely distressed for no reason. In fact, it was exactly a year since admission and he may have been reassured with an appropriate social story and reassurance that he would be going home once accommodation had been arranged.

1.7. In the community we use an approach that aims to support individuals in distress. This uses no static holds and takes into account the emotional and sensory needs of the individual. In the years we have been using this approach with AP we have never felt the need to use tight, restrictive restraints or floor restraint.

2. Reason for Admission

2.1. AP lived at home until (month) 2016, when he was 17 years old. By this time he required 24 hour 2:1 care and it was decided the best way to provide this was for AP to move into his own flat in a residential home five miles from home. This was an adult service that had agreed to take AP early with a view to him staying there into adulthood. He was able to continue to attend his special school and maintain very regular and meaningful family contact.

2.2. Transition is recognised to be a difficult time for young people and for this reason a CTR was held in (month)2017. This was extremely positive and the panel noted how well we all worked together and how positive AP’s life was. In (month) 2017 the home was bought by a new, large, hedge fund backed corporate. This was around the same time that AP developed health issues (repeated UTI’s) which took a long time to access appropriate medical treatment. For example, he had to wait 5 months for a blood test. In (month) 2017 AP had a negative reaction to antibiotics (we believe they made him nauseous) and his behaviour escalated to very difficult levels for a period of five days. He remained unsettled after this but his behaviour was at levels that could be regarded as not unusual for the service in which he was supported.

2.3. However, the following month the (excellent) manager of the service was suspended and AP was served with 13 days notice. We requested an extension and a few weeks were agreed but in mid September AP was made homeless. He initially returned to us, but this could only be a temporary measure as his younger siblings had to move to their grandparents’ house in order to allow AP’s return home. The community team tried to arrange an emergency community placement near our home but with very short notice it was extremely difficult to find providers with the right skills and training and this package fell apart within hours. Therefore, one morning in late (month) 2017 AP went to school as usual. The emergency providers had withdrawn that morning and so there was no-one to support his after school. The community team had run out of options and after returning from school he was sectioned under the Mental Health Act. At 6.30pm he was placed in a van and driven to the ATU arriving at some stage in the middle of the night.

2.4. During his time at the ATU AP was titrated off diazepam and his risperidone dose was reduced. This is positive but could have been done in the community. He was on a locked ward and we were never allowed onto the ward. We knowAP was subjected to frequent restraints, including occasional use of IM injection and there was limited understanding within the staff team of his needs. The problem for AP was that he was situated in a hospital, with no psychiatric treatment needs and in an environment where it was very difficult to provide the support he did require (consistency, staff who know him well, strong relationships with staff, frequent outside activities, a calm quiet space that was not communal).

2.5. When AP was sectioned we were told it would be for 3 months to allow the community team time to pull a package together. In conjunction with the community team we were able to quickly find an excellent support provider but finding suitable housing was difficult. (the local) CCG submitted a capital bid to NHS England and this provided money for AP to have his own house. This is now being managed by (organisation name). Please note we were lucky to fall under v (the local) CCG as they have been very proactive at accessing the NHS England capital scheme – many CCG’s have not.

2.6. AP returned to his own house, with an excellent support team in (month) 2019. However, he spent 16 months incarcerated in an ATU far from home and is showing significant levels of institutionalisation and has suffered extended trauma during that time.

3. Breach of Human Rights

3.1. During this time we believe AP’s human rights were breached both in terms of the distance he was placed from his family and the restrictive practice he was subjected to.

4. Barriers to Preventing Inappropriate Detention 4.1. AP’s case highlights common barriers in enabling people to return to, or remain in the community: 4.1.1.Accessing appropriate housing 4.1.2.Profit focussed providers. AP would likely have never been admitted to an ATU had his previous providers not been taken over by a large corporate. Small, specialist providers are better at supporting someone with complex needs who requires a very bespoke package but the reduction in funding for the industry makes it difficult for providers to survive without economies of scale. 4.1.3.Money in the wrong place. My son’s ATU placement cost £12,000 a week. His community placement is less than half the weekly cost. Ideally there would be more money in the community to enable additional training and staff to be paid more (so reducing turnover). I would suggest that providers have to sign a contract with commissioners agreeing a particular minimum wage for staff.

7 January 2019 Written evidence from Article 39 (YDA0028)

1. Article 39 fights for the rights of children living in institutional settings in England. We are a registered charity. Our name comes from Article 39 of the United Nations Convention on the Rights of the Child, which entitles children to recover from abuse and neglect in environments that nurture their health, self-respect and dignity.

2. We strongly welcome this review of the detention of children and young people with learning disabilities and/or autism. In this submission we focus on the Committee’s following questions:

• Are the human rights of children and young people with learning disabilities and/or autism who are detained in mental health hospitals being breached? • How are they breached and what needs to be done to better protect them?

4. In our submission we illustrate our concerns and recommendations for change by highlighting some of the legal safeguards vulnerable children have in other settings (‘children’ means ‘children and young people’ throughout).

5. We have serious concerns about the lack of consistency in the legal protection of children across different detention settings. We would like to see the comprehensive framework of legal rights and protections granted to children detained in other settings such as children's homes, extended to children in mental health hospitals.

6. The Children’s Homes (England) Regulations 2015 were developed through a lengthy consultative process and provide robust legal protection of children in ordinary children’s homes and secure children’s homes. There are expectations that children in secure residential child care should be loved, happy, healthy, safe from harm and able to develop, thrive and fulfil their potential within a safe and stimulating environment in high-quality buildings, with spaces that support nurture and allow privacy as well as common spaces and spaces to be active.

7. For example, we know that mental health hospitals too often fail to provide child specific or child appropriate accommodation and protection. Too many children are placed in settings largely designed for adult provision, or far away from their families and with little guidance on their rights.

8. An FOI request from us to NHS Digital in September 2018 revealed that data concerning this issue is not even collected: ‘’There is currently no agreed definition of an out-of-area placement in children and young peoples’ mental health services. Although there is a definition for adult services, this is not suitable for children and young peoples’ services. As a result, there is no published data on this.’’1

9. Furthermore, as the table below illustrates, the number of children still placed on adult wards suggests that the duties in Section 131A of the Mental Health Act 1983 (as amended by the MHA 2007) are not being implemented. This part of the legislation requires hospital managers to ensure that the patient's hospital environment is suitable having regard to the eprson’s age (subject to their needs). Managers are required to consult those with expertise in looking after children, in discharging this age- appropriate duty.

Bed days on adult wards for people aged 0-17 and the number of people aged 0-17 on adult mental health wards, in England and by CCG of Registration or Residence, April 2017 - March 20182 Bed days on adult Number of people aged wards for people aged 0-17 on adult wards 0-17 England 3,289 246

10. We have reviewed the legal safeguards in place for children detained in secure children’s homes (The Children’s Homes (England) Regulations 2015) compared with those detained in mental health hospitals and found there areas where the latter could be improved: • Prohibition of corporal punishment • Independent Person: visits and reports • Access to high quality independent advocacy.

12. Prohibition of corporal punishment

We have been in dialogue with the Department for Education about removing the ‘reasonable chastisement/punishment’ defence in health settings. The defence has been removed from state schools (1986), children’s homes (1990), private schools (1998), fostering (2002) and early years settings (2003). We are very concerned that the availability of the defence in health settings could interfere with children’s protection from unlawful and abusive use of force.

1 Freedom of Information request from Article 39 to NHS Digital, August 2018; information received 5 September 2018. 2 Children and young people (CYP) in adult mental health in-patient wards. Oct 16th 2018. NHS Digital. 14. Independent Person: visits and reports

The Children's Homes (England) Regulations 2015 are written to make the "registered person" accountable. This means either the registered provider (owner) or registered manager depending on how the home is organised, run and managed. For small organisations the provider may be much more involved in the day- to-day running and in larger organisations the registered provider's responsibilities are held by the responsible individual and the registered managers. Regulation 44 stipulates that the Registered Person in a secure children’s home must ensure that an Independent Person visits the home at least once a month.

When the Independent Person is carrying out a visit, the Registered Person must help the Independent Person: o to conduct interviews in private o inspect the premises of the home and the home’s records

A visit by the Independent Person to the home may be unannounced.

The Independent Person must produce a report about a visit which sets out whether: o children are effectively safeguarded; and o the conduct of the home promotes children’s well-being.

The report must go to: o Her Majesty’s Chief Inspector; o upon request, the local authority for the area in which the home is located; o the placing authorities of children; o the registered provider and, if applicable, the registered manager; and o the responsible individual (if one is nominated).

The Independent Person’s report may recommend actions that the Registered Person may take in relation to the home and timescales within which the Registered Person must consider whether or not to take those actions.

The presence of an Independent Person would give considerable support to the role of Independent Mental Health Advocates in challenging poor practice and representing/advocating the perspective of the child. 15. Access to high quality independent advocacy

In children’s social care settings, children are entitled to advice and assistance from an independent advocate to help them express their wishes and feelings and uphold their rights – whenever they wish to make a representation. This is very broadly defined; it is not tied to making a complaint. There is no equivalent broad entitlement in health settings. Moreover, the national standards for children’s advocacy services do not address the needs of children in health settings, including detention. The standards (statutory guidance) were published in 2002 and focus on children in care and care leavers. They have not been revised to take in children’s growing entitlement to advocacy, and increased awareness of the rights violations suffered by children, particularly when they are detained.

16. The presence of effective advocacy and the Independent Person enhances the scrutiny and accountability of children’s homes. Furthermore, The Children’s Homes (England) Regulations are guided by nine clear Quality Standards and are monitored by the Ofsted Inspection Framework. For example, Ofsted will inspect at least twice a year and produce inspection reports following every full and interim inspection that will outline how well the secure children’s home meets the needs of the children living there. By contrast the Care Quality Commission uses a trust’s previous ratings to decide which services to inspect, meaning the maximum interval for re-inspection can be anywhere between one year for core services rated as inadequate to five years for core services rated as outstanding.

Our recommendations

15. We would like to see the regulatory framework for health settings brought up to the standard that exists for children’s homes. The Mental Health Unit (Use of Force) Act 2018 will be an important step in that direction. However, as a matter of urgency, the Department for Health must deliver its commitment to provide specific protection to child patients within the statutory guidance.

16. We specifically recommend that children’s legal protection be strengthened in the following ways:

17. The ‘reasonable chastisement / punishment’ defense must be removed from health settings.

18. Settings and services must undertake equality impact assessments in respect of restraint methods and each of the protected characteristics in the Equality Act 2010.

18. While the MHU Act 2018 – Section 6(5) outlines arrangements for informing parents and carers when a child or young person has been restrained, it is, as outlined above, imperative that the Act and the aligned statutory guidance is brought into force as soon as possible.

19. Clear arrangements must be in place for responding to any concerns or allegations of misuse of restraint or restrictive intervention, including the procedure for notifying the local authority of any child protection concerns.

20. While the Mental Health Act 2007 amended the 1983 Act in respect of age appropriate wards, we would like to ask the Committee to seek information from the CQC about how well this legal protection has been implemented, and who is responsible for monitoring at a national level.

21. The right to an independent advocate must be extended in health settings so that children can access advice and assistance whenever they need help to express their wishes and feelings and protect their rights. The national standards for children’s advocacy services must be revised to address the needs of children with learning disabilities and/or autism who are detained in mental health hospitals, and others in health settings.

21. The Care Quality Commission should at the very least be notified within 24 hours and the reasons for placement and its proposed length should be transparent and monitored.

22. To support this, a system of Independent Persons should be introduced to bolster scrutiny of mental heath hospitals on a systematic basis and improve two-way communication between children and young people, their carers, and the staff and management of hospitals.

7 February 2019 Written evidence from The Centre for Learning, People First Independent Advocacy (YDA0030)

We are involved in undertaking CTR’s and CETR’s across North Cumbria and the North East. The feedback is from experts by experience as carers and family members from our team.

It is both interesting and depressing to hear how little progress has been made overall.

The information purports to ‘children and young people’, but really what age group does that cover? Certainly from a CETR perspective, we see lots of people, for example, aged over 30. One of the clients featured in the broadcast was over 40.

The story of ‘Beth’ was particularly poignant and depressing.

The initiative was well intentioned, but probably too much emphasis on the ‘wrong end’ of the problem. There should already be mechanisms in place to effectively monitor the progress of clients in the system. We believe in the value of CTRs, but is the government effectively squeezing already overstretched and underfunded services who may have little room for manoeuvre. And at what financial cost to gather all the ‘experts’ together?

The whole issue needs looking at holistically. There are complex problems faced by vulnerable families and the system’s often feeble and ineffective attempts to intervene and ‘turn them around’ (Focus Families/problem families agenda).

One of our team, a parent carer of a 37 year old daughter with ASD, would listen to interviewees description of their child’s behaviour and think how closely it reflected his own family’s experiences. Opportunities for diagnosis or appropriate action were often not recognised or taken by the authorities, so families were left to struggle and problems would multiply. So many people with LD and ASD, often undiagnosed formally, end up in hospitals, prisons and other institutions.

More training in recognition of behaviours/symptoms for Social/general clinical staff and educationalists and doctors is required. More advice and education for parents on how to deal with these complex problems.

Social Services - probably with some justification - complain of chronic underfunding and losing experienced staff, meaning less continuity for vulnerable clients who then might be seen by several different agency staff, ergo no continuity. Educationalists seem to have been forced to concentrate on meeting academic targets and are often not funded or poorly resourced for special needs. An experts daughter saw an educational psychologist at age 9 but wasn’t ever ‘statemented’ or even diagnosed with ASD until she was 18. Another person in our team’s, son was not diagnosed until he was in his late twenties when all the adjustments that could have been made through his education at an earlier and constructive time were lost through endless arguments with professionals over funding. As more is learned and understood about ASD/LD, then this should be fed down to those professionals who come into contact with ‘difficult’ children. Taking children out of school, excluding them, putting them into PRU’s only exacerbates and leads to more problems later on (and cost to the state).

Although much of the above is possibly an idealistic notion because of financial implications, some element of prevention of problems arising is surely better than letting problems magnify at great cost to the client/family’s sanity - and the exchequer - in later life.

Recognition of the scale of the problems by MPs/government and the consequences of continuing to underfund services generally and the failure to provide adequate facilities in the community must also be a priority. Not least also the need to sort out funding for NHS & Social Care, as they are often pitted against one another within the present system.

The pressure from government to achieve quick results from their initiatives is an overarching factor in all this, and although Transforming Care in its present form is having some success, the fact that yet another of their well intentioned efforts isn’t making the expected impact, should tell them that more funding is needed generally, but particularly at the early and adolescent stage of a child’s development. The TC agenda was set up to ‘transform’ after years of abuse culminating in the Winterbourne View scandal. WE are not seeing the turnaround of people out of ATU’s into the community for two reasons – one- the processes within the ATU’s are not effective due mainly to bad communications and two- the community support is delayed, unseen sometimes due to arguments over funding and /or due to appropriate placements not being built or available.

IF ATU’s were closed we could at least be working with people in their communities, perhaps under the new ICS where the chances of people gaining access back into a valued life were more available.

17 February 2019 Written evidence from YoungMinds (YDA0032)

1.0) I am writing on behalf of YoungMinds to provide a written submission to your Committee’s inquiry into the detention of children and young people with learning disabilities and / or autism. We are pleased that your Committee has chosen to examine this important issue, following the findings of its inquiry into youth detention.

1.1) YoungMinds is the leading children and young people’s mental health charity in the UK, and we put the experiences of children, young people and families at the heart of everything we do.

1.2) This submission will draw heavily on the insights and lived experiences of the children, young people, parents, carers and professionals that we work with, including the insights we collected as part of our participation work for NHS England’s Tier 4 review, and Service Specification consultations.

2.0) Children and young people with learning disabilities, autism or complex needs are statistically more likely to develop mental health problems. Indeed, research suggests that children and adolescents with learning disabilities are over six times more likely to have a diagnosable psychiatric disorder than their peers1. In total, 36% of children and adolescents with a learning disability in Britain have a diagnosable psychiatric disorder2, whilst 70% of children with autism spectrum disorders (ASD) will have a mental health concern at some point in their lives3.

2.1) A significant number of children and young people with learning disabilities, autism or complex needs are detained in Child and Adolescent Mental Health Services (CAMHS) Tier 4 inpatient hospitals or adult mental health hospitals. In October 2018, 710 children and young people aged 0-24 with learning disabilities or autism were detained in hospital, with 260 of these being under the age of 184.

1 Emerson and Hatton (2007), The Mental Health of Children and Adolescents with Learning Disabilities in Britain. Institute for Health Research, Lancaster University. 2 Ibid 3 National Autistic Society (2010) You Need to Know 4 NHS Digital, Assuring Transformation: Learning Disability Services Monthly Statistics (October 2018). Accessed on 18th February 2019 – tab 17. 2.2) As we have found from our participation work with children, being placed in a mental health hospital is often not the most appropriate setting for children and young people with learning disabilities, autism or complex needs. We have heard a range of reasons about why detention in mental health hospitals can be inappropriate for some children or young people with autism and / or learning disabilities, including:

• Staff not being trained to be able to understand or meet the specific needs of these young people, including their communication and other health needs.

• Admission being based on risk or the management of behaviour, which is deemed as ‘challenging’, rather than the admission providing therapeutic benefit.

• Children or young people being kept in hospital longer than they need to, partly due to a lack of appropriate community-based provision, which delays discharge.

• Being kept in inappropriate settings, such as long-term placements in Assessment and Treatment Units (ATUs), or Psychiatric Intensive Care Units (PICUs). Worryingly, organisations such as CRAE, have highlighted an increase in the number of children with learning disabilities who are living in Assessment and Treatment Units since 20155.

• Being placed in hospitals miles away from their family, friends and other support networks. Worryingly, recent statistics (from November 2017) showed that a quarter (24%) of children and young people with a learning disability paced in a mental health hospital were being kept 100km or more away from their home6.

2.3) This has been exacerbated by the separation of learning disability and autism policy, from mental health policy and law in recent years - mainly through the Transforming Care programme – regardless of the being significant overlaps and interactions between the two. Despite many children and young people with learning disabilities, autism or complex needs being detained in mental health hospitals

5 Data taken from NHS Digital, Assuring Transformation: Learning Disability Services Monthly Statistics (2015-2017), referenced in CRAE, State of Children’s Rights (2017): Health Briefing. 6 NHS Digital, Assuring Transformation: Learning Disability Services Monthly Statistics (November 2017). Accessed on 18th February 2019 – tab 17. these services are not being designed specifically to meet the needs of this group, and many are consequently failing to be able to do so.

3.0) Being placed in inappropriate settings can be distressing and traumatic for children and young people with learning disabilities, autism or complex needs, and can lead to them behaving or communicating in a way that staff find challenging, as a normal adaptation to the distress that they feel7. As a result, many of these children or young people are subject to traumatic and unnecessary restraint, seclusion or overmedication, which can further undermine their health outcomes and treatment, as well as damaging relationships with staff.

3.1) Previous statistics have demonstrated that children and young people with learning disabilities and / or autism are much more likely to be subject to restraint or restrictive interventions than their peers8. This deprivation of liberty may also be discriminatory and contravenes both the Equality Act, and human rights conventions. Furthermore, international bodies - including the UN Committee on the Rights of the Child (2016); the Committee on the Rights of People with Disabilities (2017); and the Special Rapporteur on Torture and Other Cruel, Inhuman or Degrading Treatment and Punishment (2013, 2016) - have all raised concerns about the use of restrictive practices on children and young people in psychiatric, autism and/or learning disability institutions and hospitals in the UK.

3.2) At YoungMinds, we are delighted that the Mental Health Units (Use of Force) Act (2018) legislated to introduce the systematic recording of all uses of force within mental health hospitals, which will lead to robust data to enable an assessment of the disproportionality of the use of force against children and young people, and people with learning disabilities and autism9.

4.0) The main reason for the inappropriate detention of children and young people with autism, learning disabilities or complex needs is the lack of appropriate community-based provision. This lack of community services can mean that young people are escalated through tiers given gaps in services10. Similarly, it can also lead to

7 YoungMinds, Addressing Adversity (2018) 8 Health and Social Care Information Centre (2015) Learning Disability Census: England 2015, experimental statistics 9 Mental Health Units (Use of Force) Act (2018) 10 Lenehan, C, These are our Children (Council for Disabled Children, 2017) young people being kept in hospital longer than necessary due to a lack of provision within the community to ‘step-down’ to.

4.1) Despite the direction of travel signalled by the Transforming Care programme, funding cuts to local authority budgets have led to a reduction in preventative and early-intervention services, including short-break services, which has disproportionately affected the service provision for children and young people with learning disabilities, and autism, and their families and carers11. In a December 2018 report, the National Autistic Society demonstrated that both the number and proportion of young autistic people in mental health hospitals is now higher than in 201512.

4.2) In addition to the personal cost of detaining a young person in inappropriate accommodation, there is also a significant financial cost. In her review into the care of children with learning disabilities, Dame Christine Lenehan stated that inpatient costs for individual children average at £1m every three years for this cohort of young people13. Whilst, the CAMHS benchmarking network reported that the average cost for a CAMHS inpatient stay was £61k14 . A redistribution of funding from specialist inpatient services to preventative and early-intervening community-based services would not only lead to better outcomes and patient experience, but also be more cost-effective.

5.0) In the last two months, there has been a welcome recognition and commitment to address the inappropriate detention of children and young people with learning disabilities and / or autism through both the NHS Long-term Plan, and the Independent Review of the Mental Health Act.

5.1) At YoungMinds, we welcome the commitments to expand community-based provision, reduce inpatient stays and to improve safeguards in relation to the over use of restraint, isolation and medication for children and young people with a learning disability, autism or both.

5.2) We also recommend that the Government implement the recommendation from the Independent Review of the Mental Health Act to introduce a new duty on health and social care

11 Ibid 12 National Autistic Society, Beyond Transforming Care? What needs to change? (2018) 13 Lenehan, C, These are our Children (Council for Disabled Children, 2017) 14 CAMHS Benchmarking Network (2016) commissioners to collaborate to provide sufficient community based alternatives to detention for those with learning difficulties, autism or both, and to facilitate timely discharge15.

5.3) Beyond this, children and young people, and their families, have consistently told us that they do not know their rights when accessing mental health hospitals.

5.4) Consequently, YoungMinds and the National Autistic Society have co-created the ‘Always Charter’ with children and young people who have lived experience of inpatient care, and their families. The ‘Always Charter’ identifies principles of care that young people and families think should always exist in mental health hospitals16.

5.5) We recommend that through the course of your inquiry the Committee considers whether the existing rights of all children and young people in inpatient services need to be strengthened and how consistently these rights are currently communicated to children and their families.

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6.0) If you would like to discuss any of the points raised in this submission or for a representative of YoungMinds to provide further evidence to the Committee, please do not hesitate to get in contact.

20 February 2019

15 Modernising the Mental Health Act: Increasing choice, reducing compulsion (2018) 16 YoungMinds, Always Campaign – accessed 20th Feb 2019 Written evidence from Rightful Lives (YDA0034) Thank you for the opportunity to give evidence to the Committee on 12 December and for the attention the Committee is giving to the issue of conditions in inpatient learning disability units. Further to the Committee’s evidence session, we seek to set out the wider context of conditions in inpatient learning disability units and the numerous challenges that are presented in moving people out. 1. People with learning disability and/or autism are detained in inpatient units due to a systemic failure to provide adequate community support through adult social care services.

2. Once inappropriately detained in inpatient units, people are often subject to overly restrictive and inappropriate regimes that entail seclusion and restraint, both chemical and physical. This is largely because these units are not equipped to meet the individual’s care and support needs, which are not psychiatric in nature.

3. Alongside restrictive regimes, there is little regard for the dignity and autonomy of individuals in such settings. This disregard is itself institutionalised and can also be observed in the poor outcomes experienced by people with learning disabilities and autism in health, criminal justice, education, employment and housing.

4. Once inappropriately detained there is risk aversion when it comes to discharge, partly due to the over-medicalised nature of the system. It is exacerbated by the disincentives in funding arrangements to move people back to community support; patchy commissioning of appropriate support; and the profit motives of inpatient units. Reform is urgently needed to ensure that 1) people currently living in the community do not come to be detained, 2) those unnecessarily detained in inpatient settings are discharged as soon as possible and 3) those living in hospital are not subject to abuse, maltreatment or poor care. The Committee has been made aware of specific examples of maltreatment and poor care that likely amount to rights abuses under the Human Rights Act (1998). The broader rights framework for making recommendations on the conditions in learning disability inpatient units must include consideration of Article 19 of the UN Convention of the Rights of Persons with Disabilities (UN CRPD) – namely, the right of disabled people to live independently in their communities. We make the following recommendations to the Committee: 1. Ring fence funding to provide community based support for people with learning disability and/or autism that focusses on supporting an individual before they have escalating support needs, not on crisis support.

2. Mandate meaningful involvement of individuals and their families in the design of community support services so that they meet the person’s needs and are genuinely co- produced.

3. Ensure that Transforming Care Partnerships (TCPS), established to facilitate joined up working across local authorities and clinical commissioning groups, have adequate funding to meet local demand for community support provision for those moving out of inpatient units.

4. Establish scrutiny of profit-making companies delivering inpatient services to ensure vested interests do not prevent discharge planning or bias discharge planning in favour of connected settings, such as locked rehabilitation units and residential care homes.

5. Facilitate partnership working between commissioners and good providers of community support, based on best practice models, to ensure that discharge planning is effective and that appropriate, person centred support is commissioned.

6. Give greater, statutory weight to the Care and Treatment Review (CTR) in discharge planning to challenge risk aversion and empower commissioners and others to present viable alternatives to inpatient care for people before and after admission.

7. Reduce the dowry entitlement to transfer funding from health bodies to local authorities from 5 years so that individuals do not need to be detained for long periods of time before funding incentives change.

8. Explore alternative professional leads to over-see learning disability and autism care, so as to move away from the medicalised oversight of psychiatry.

9. Place a duty on local authorities and clinical commissioning groups to make a strong case for a move to an Assessment and Treatment Unit before someone is removed from the community, with judicial approval required in contested cases.

10. An independent whole-system inquiry into the system of care and support for people with learning disability and/or autism, led by the Equality and Human Rights Commission.

Why people are detained in inpatient units For several decades UK policy has moved away from the medical model of disability and a medicalised system of care for those with support needs. This included the closure of state run long-stay hospitals that had been the ‘home’ of thousands of people with learning disability and/or autism since the early 1900s and steps towards people living in their own homes with social care support. Nonetheless, some 2,350 people with learning disability and/or autism live in inpatient settings. Since the Mental Health Act (2007) someone with autism or someone with a learning disability if they present ‘abnormally aggressive or seriously irresponsible conduct’ can be detained, even if they don’t have an additional psychiatric need. This is sometimes termed ‘challenging behaviour’ or ‘behaviour that challenges’ by practitioners. Many practitioners who work with people who have a learning disability and/or autism understand that behaviour that challenges is invariably a form of communication; it is a way for a person to control and respond to their environment when they find it hard to otherwise communicate. With the right support to communicate and the right environment, challenging behaviour can be reduced and often eradicated. Neither learning disability, autism nor behaviour that challenges are psychiatric disorders, yet they are met with a medical response when community support provision is unavailable or too limited to meet the needs of an individual. The fact that people with learning disability and/or autism are detained in ATUs and other inpatient settings underlines a systemic failure to provide adequate support and uphold the right to independent living. Furthermore, the detention of people with learning disability and/or autism stems from institutionalised discrimination. We do not permit services to detain any other group for ‘care and treatment’ when they do not have a psychiatric need for it. This discrimination is built out of a stigmatisation of and apathy towards people with learning disability and/or autism’s different way of being in the world. Why there are systemic failures to provide adequate community support for individuals with learning disabilities and autism As someone will have a learning disability and/or autism their whole life (and this should be diagnosed in childhood) local authorities and other bodies should be able to identify and plan support for people from infancy on into their adult lives. This should include education, employment and housing alongside the social care planning that will support someone to live independently in their community. For some people this will be 24 hour support with a number of support workers so that they can stay safe at home and when doing all those day to day things that make our lives fulfilling. Planning should occur around key milestones and known risk points, such as when a young person reaches adulthood (both in terms of the physical and emotional changes we all experience progressing from adolescence into adulthood, and in terms of the legal transition from provision under children’s services to adult social care). Presently this does not happen and people enter inpatient units when services have not been planned or made available to them. Often a lack of appropriate support will cause concern for the individual and their family that they or someone else will come to harm. They may also be fearful that they will end up in the criminal justice system if the problem escalates. There are specific barriers that need to be addressed in order to reform the system for community support provision:

- Currently, funding for services is diverted to support people at a point of ‘crisis’ rather than supporting people early and helping to prevent their need for more intensive services. General funding pressures on local government are exacerbating the problem. The eligibility threshold for social care is increasingly high and the extent of support provision is diminishing.

- Services are often too prescriptive and are not designed alongside the individual and their family. Without drawing on the valuable experience and expertise of loved ones, services end up delivering poor support that does not fulfil the person or meet their needs. It becomes far more likely that the person will then display behaviours that lead to inpatient admission. - It is too easy to remove someone from the community and detain them under current legislation. Due regard is not given to the wishes and feelings of the individual and their family or less restrictive alternatives. Often families themselves will not be aware of their rights or the alternatives for their loved one and there is limited support for them to access information. Many people with learning disability and/or autism live in the community and lead fulfilling and successful lives with the right support. It has been the policy of successive governments to support this since the Mansell Report (2003/4) and there are numerous good support providers who know how to deliver the right support to people. The fact that some people are unable to live in their communities is due to a failure to deliver the right support, rather than an absence of knowledge on how to design it for people.

Why people spend so long in inpatient units The most recent figures about people with learning disability and/or autism detained in hospital show that1:

- 2,350 people were in inpatient units - 58% have been there for over 2 years - 43% last had a review of their care over 6 months ago Once detained, significant numbers of people will spend a long time in an inpatient unit. This can be far longer than the time needed to make an assessment of the person’s care and support needs. People remain indefinitely in inpatient units because there is no appropriate provision for them to move to in the community. In some cases unnecessary risk aversion on the part of medical professionals is a barrier to discharge into community support that is available. In other cases, the right support, including housing, will not have been commissioned by the responsible local authority. In this sense, there is nowhere else for them to go so they must remain in hospital. There are several key issues that must be addressed to accelerate discharges from hospital:

- Medical practitioners involved in discharge planning are not familiar with viable community based support options. Better knowledge of these services should challenge risk averse attitudes.

1 Learning Disability Services Monthly Statistics, October 2018, NHS Digital - Care and Treatment Reviews (CTRs), which involve family members and ‘experts by experience’, do not have adequate weight in decision making. This is despite the introduction of CTRs as a way of challenging risk aversion and their evidenced success in some cases.

- Good providers of social care are not involved in the process of discharge planning early enough, this means the design of services is far less likely to actually meet the individual’s needs after they are discharged. It creates a greater risk that they will be readmitted to hospital or that planning will fail in the late stages close to discharge.

- There are perverse incentives for the local authority to place someone in an inpatient unit as the cost of their care is met through health funding whilst in hospital. When they are discharged to community support it is the local authority that must meet the cost. Currently, dowry arrangements between health and social care to support discharge from hospital only begin after someone has been detained for 5 years.

- The dominant inpatient units are profit making organisations. Professionals working there, including medical practitioners making decisions about discharge, have a vested interest in maintaining occupancy rates in the units. It should also be noted that a significant number of people are discharged to locked rehabilitation units and ‘step down’ services, which are not community based and present the same problems in relation to someone’s right to independent living. The profit-making companies that currently run large inpatient units are increasingly developing these types of services, creating pathways for inpatients from hospitals into residential care homes not support in the individual’s own home.

Broader inequalities for people with learning disabilities and autism and institutional discrimination Research repeatedly shows that people with learning disability and/or autism experience significant disadvantages and poor life outcomes and that they are also likely to experience bullying, abuse and hate crime:

- People with learning disabilities die 25 years younger, on average, than the general population. A significant number of learning disability deaths are impacted by delays in care or treatment; gaps in service provision; organisational dysfunction; or neglect or abuse.2

- Autistic children are 3 times more likely to be excluded from school than children without special educational needs.3

- Just 6% of people with a learning disability are in paid employment4 , 32% of people with autism are in paid work.5

- 7% of people in contact with the criminal justice system have a learning disability, compared to 2% of the general population and 29% of prisoners were identified as having a learning disability or difficulty when assessed as they entered prison in 2015-2016.6

- 73% of people with a learning disability and/or autism have been the victim of a hate crime7 and 82% of children with a learning disability are bullied.8

These statistics represent the institutionalised nature of prejudice against people with learning disability and/or autism. It underlines their regular absence from thinking in policymaking and discriminatory attitudes towards a different way of being in the world. This prejudice has made society lean towards accepting the unacceptable for people with learning disability and/or autism, particularly in times of austerity. As funding pressures increase on local authorities, we are seeing a move in commissioning towards more institutional ‘community based’ settings, even though we have long upheld that this sort of care undermines people’s rights and dignity. This includes large developments of flats, where big groups of people with learning disability and/or autism are effectively warehoused, or supported living homes for 8 or 10 people. These, often cheaper, support options can come to replicate institutional settings (and the neglect and abuse to which such settings are prone) whilst offering individuals limited choice and control over their lives or a chance at an ordinary way of living that most of us take for granted.

2 Annual Report: Learning Disabilities Mortality Review, December 2017, University of Bristol 3 National Autistic Society 4 https://chrishatton.blogspot.com/2016/10/an-employment-gap-as-big-as-ritz_18.html 5 National Autistic Society 6 Bromley Briefings Prison Factfile, Autumn 2017, Prison Reform Trust 7 #ImWithSam Report, 2016, Dimensions 8 Bullying Wrecks Lives: the experience of children and young people with a learning disability, 2007, Mencap Whilst it is not for the Committee to make recommendations in relation to these inequalities, they evidence the context in which detention and poor treatment in inpatient units occurs and the disregard for the lives and rights of people with learning disability and/or autism that is keenly felt by people and their families. We encourage the committee to look at the Rightful Lives online exhibition, which explores the human rights of people with learning disabilities and/or autism. The exhibition includes submissions from people who have lived in inpatient settings, family members and others. The exhibition can be accessed via: http://rightfullives.net/

19 February 2018 Letters to The Editor The Daily Mail Northcliffe House 2 Derry Street, Kensington London W8 5TT England, United Kingdom

Dear Editor (and People of The United Kingdom):

Some valuable, important, and perfectly imperfect children are in cages.

I applaud your inquiry into the inhumane seclusion of autistic lives, and/or those with learning disorders in the United Kingdom’s ATUs, and other similar treatment facilities. To your readers who are part of this movement, I applaud your courage. The articles Ian Birrell penned and the movement he has led garnered my attention, shedding light and placing in perspective the reality. The reality is: Inhumanity is an ongoing phenomena of despair, funded by two ​ governments that once served as trendsetters together.

From an outsider’s viewpoint, the reality for me, at this juncture, appears akin to Magna Carta declaring that inhumanity has once again resurfaced. Parliament is the metaphorical ​ ​ ‘Charles I’, back to face his doom once again. I have a suggestion for how to assertively address this, while not risking any more lost days for families waiting and innocent lives suffering.

To be frank, the inevitable “doom” is upon us if your country can’t get off this Brexit ​ ​ ​ “high-horse,” for just one brief moment, and make a call. The call would result in your ​ acknowledgment that without humanity, why even bother having organization in modern society? It will only end in disaster. In America, the inhumanity basks in the destructive trail of a civil war of partisanship as well. However, you’re succeeding and addressing it, while we’ve ​ yet to scratch the surface on this issue. Churchill, Roosevelt, Thatcher, and Reagan are likely ​ shaking their heads up there knowing we can both be better. ​

Reality is: In navigating the path of my published series journaling about the Priory’s ​ ​ parent company, U.S.-based Acadia Healthcare Co., I flew 10 hours on two-days’ notice to hear ​ a man describe how he talks to his daughter through a 6x6 hole in the wall. The hole is the same in which that young woman is fed, like livestock. Reality is, I was the first American ​ ​ journalist to report this story back on December 13, 2018. The reality is embedded in our video ​ ​ ​ ​ ​ report from the House of Commons. That video is the one in which my colleague served (as ​ Acadia’s founder and now-Chairman allegedly put it) to appear as, “a leggy blonde in a pink ​ ​ coat talking about kids being used as ‘cash cows’.” Despite the comment, that moment prompted the firing of the largest ‘fat cat’ of the clowder, Joey Jacobs (Acadia’s CEO of seven years, pictured in your November 10 account by Birrell). Reality is, the ‘fat cat’ didn’t see ​ ​ ​ ​ suffering children when he acquired Priory in 2016 for $2 billion of money that certainly wasn’t his; he saw margins. It’s all about the margins, the money. They truly are “Profiteers of Misery”.

On December 12th, 2018, I attended the first hearings on this issue in London’s House of Commons, which is where I heard the father speak of the constrained medium for which he communicated with his daughter. The focus of the journey was to gather evidence for the investors, consumers, potential consumers, as well as the humanitarian community, who would take interest in Acadia’s actions or the actions in general. The meeting was convened at the request of Health Secretary, MP Matt Hancock.

Last night, I read the transcript of a hearing on the same issue held by the same Parliamentary Joint Committee on Human Rights, dated March 27th, 2019. The transcript is roughly 8,000 words and it includes the term “money” twice. Both times, it is used to discuss how there’s improper funding attributed (by the NHS) to inadequate care for these lives. Not once does it name “money” as the culprit in this case, despite money’s role as the “elephant in the room”.

I believe that former CEO Joey A. Jacobs bought an NHL hockey team with the money ​ ​ used to lock up autistic children as opposed to care for them. His replacement, Debra Osteen, is the proverbial “lemonade” that oversaw Cygnet’s U.K. operations prior to her new role of replacing a “lemon” at Acadia. The founder of Acadia became the chairman. Reeve B. Waud, of Chicago, was the man who fired Jacobs, and inserted himself atop the conglomerate’s ​ ​ hierarchy. Simultaneously, he’s cashed in the loot from stock sales, some directly coinciding with the acquisition and value boost the market responded with when the Priory was purchased – again, purchased with someone else’s money. This must be repaid; however, some of his loot was also used to allow him to sit on the back porch of Maine’s largest mansion and literally ​ ​ wave it in front of your face. ​ ​

I spent seven weeks preparing a report, from December into February, in response to ​ ​ Parliament’s call for evidence. My belief is it could be too wordy and unclear. So, I am writing to ​ ​ ​ ​ ask that you help amplify my belief that it’s time we stop ‘beating around the bush’ and recognize that with these egregious instances,

IT’S ALL ABOUT THE MONEY. IT’S ONLY ABOUT THE MONEY. ​ ​ ​ ​

Please convey to MP/Health Sec. Matt Hancock, the NHS, the JCHR committee members, and any of those who care to listen, the following message: ​ ​

Again, some valuable, important, and perfectly imperfect children are in cages. ​ Meanwhile the top two ‘fat cat’ CEOs that inked NHS contracts are over here, aloofly ​ ​ abusing their obligations. Lives in pain are similarly abused on a daily basis in America at the hands of these same profiteers. However, you are answering the call in a manner we have yet to understand. I would petition you to invasively probe the core issue: each ​ life is a ‘cash cow'. It’s the only reason this is happening.

In America, there’s an old adage that “finding more bang for your buck” is the key to a healthy business. In contravention of this standard, these “fat cats” are in the corner doing anything but that. Also, in essence, they’re buying mansions and hockey teams with the loot, for which your government pays a big “buck” for a dreadfully ineffective and awfully inhumane “bang”.

Another adage coined by our 26th President, ironically, is “the buck stops here”. That couldn’t be further from the truth. It starts as a pound, converts to a buck, and flows ​ ​ into a pool of vanity.

Advocates, if you want your funding back, ask your leaders to call our leaders and lodge the request. In cases of inhumanity, we have to combat it humanely. Division ​ ​ only inhibits humanity, while objectivity, unity, and courage promote it. Those of us who understand will echo your former leader, Mr. Churchill’s, bold supplication to “never give up”.

Churchill also said my country’s friendship with yours is a “special friendship”; ​ ​ that said, our leaders are far less aware of the injustices enacted by the ‘fat cats’ affecting both nations. However, your country’s call is mightier than my pen. There are ​ ​ some lives here, too, many children as well, hoping you will pick up the phone and ask ​ ​ ​ our leaders to hold these men accountable.

Together, let’s hold each other to a higher standard.

Respectfully, Penn Little Human from America 4/3/2019 Taxation And Misrepresentation: U.S. Mental Health Care Reform And Its Deadly Economics | Seeking Alpha

Short Ideas | Healthcare

Taxation And Misrepresentation: U.S. Mental Health Care Reform And Its Deadly Economics

Dec. 20, 2018 5:22 PM ET1 comment | 1 Like by: Penn Little Summary

The MHPAEA and ACA dollars have dried up for U.S. mental & behavioral health care providers such as AAC holdings, Acadia healthcare, and Universal Health Services.

The U.K. appears to be final frontier for liquidity; like the U.S., the dollars come from the public through taxes.

California family points to industry financial burdens as reason for son's death in a privately owned facility (the majority of the industry is private equity backed).

Long­time fundraising director for Senate HELP committee chair became Acadia Healthcare exec and full­time lobbyist in 2015.

Advocates in the U.S. don't quite yet recognize the problem. Politicians seem to be waiting for disaster to occur.

Source: iStock.

On December 16, 1773, British American Colonists rebelled against onerous taxes and staged the Boston Tea Party, dumping 46 tons of tea into Boston Harbor ­­ forever symbolizing revolt against;

taxation without representation.

Now, 245 years later to the very week, we see some similar economic and political precursors in U.S. and U.K. healthcare systems. This started a decade ago when President George W. Bush signed the Mental Health Parity and Addiction Equity Act and Barack Obama expanded that parity to millions of previously uninsured Americans. https://seekingalpha.com/article/4229532-taxation-misrepresentation-u-s-mental-health-care-reform-deadly-economics 1/16 4/3/2019 Taxation And Misrepresentation: U.S. Mental Health Care Reform And Its Deadly Economics | Seeking Alpha

President George W. Bush inks The Domenici Wellstone Mental Health Parity and Addiction Equity Act into law on

October 3, 2008, as part of the TARP Package. Source: StarTribune.

President Obama makes remarks in 2013 on Mental Healthcare. Source: The White House.

The two laws combined created a potent legislative cocktail. It was not regulated at the federal level and created an environment ripe with fraud and abuse.

Private Equity firms and strategic public firms rushed in like it was Oklahoma in 1889. Everybody wanted to stake their claim and set up shop.

https://seekingalpha.com/article/4229532-taxation-misrepresentation-u-s-mental-health-care-reform-deadly-economics 2/16 4/3/2019 Taxation And Misrepresentation: U.S. Mental Health Care Reform And Its Deadly Economics | Seeking Alpha

M&A Activity in the Sector since 2008. Source: The Braff Group

And now, a clear asset bubble exists. A seen below, companies like Acadia Healthcare Company Inc. (Nasdaq: ACHC), for instance, which has paid 34X EBITDA for a deal:

Acadia Paid a whopping 34x EBITDA for Behavioral Centers of America in 2012. Source: Bloomberg Terminal.

Also, over the weekend, the Affordable Care Act was put in jeopardy.

On Monday, the lead story was that Acadia Healthcare Company (Nasdaq: ACHC) made a major shift ­­ a CEO swap after we attended and reported on U.K. Parliamentary hearings then published a brief report last Thursday evening. https://seekingalpha.com/article/4229532-taxation-misrepresentation-u-s-mental-health-care-reform-deadly-economics 3/16 4/3/2019 Taxation And Misrepresentation: U.S. Mental Health Care Reform And Its Deadly Economics | Seeking Alpha Also, a decade later, the then­"easy money" isn't so easy. The treatment provider has to work extra hard to get the money, cut costs, lean­out the business, and much less to take care of lives in care then...

Then patients, many of them children, begin to die ­­ especially in drug treatment centers, where treatment is broadly defined and barriers to entry dangerously low.

2018 has seen too many deaths in the centers, public and private, that are supposed to be quelling an addiction crisis that, opioid overdoses alone, is killing the same amount of people every day as The Sandy Hook Massacre, The Las Vegas Shooting, and the Virginia Tech Tragedy, combined +10 more people, every single day.

The Ultimate Price of Questionable Financial Practices

Mark Vallas, 24

According to the Chicago Tribune our former Chicago public school system CEO, Paul Vallas lost his son, Marc, in a private Orange County addiction treatment center. Paul Vallas is presently running for mayor of Chicago.

Photo Left: Mark Vallas, Died in February 2018 at Privately Owned New Existence Recovery in Huntington Beach, CA.

Brandon Nelson, 26

This past spring, The Orange County media highlighted the cash flow struggles of now­ defunct Sovereign Health. Back in June, there were reports Sovereign Health was unable to adequately fund operations, or pay their own staff. https://seekingalpha.com/article/4229532-taxation-misrepresentation-u-s-mental-health-care-reform-deadly-economics 4/16 4/3/2019 Taxation And Misrepresentation: U.S. Mental Health Care Reform And Its Deadly Economics | Seeking Alpha The OC Register and San Jose Mercury News shared the story of Brandon Nelson, dead at age 26, after allegedly hanging himself at an unlicensed facility owned by Sovereign.

Photo Right: Brandon Nelson (Center), a former varsity football player at Santa Monica High School with his parents Allen and Rose. Source: OC Register.

Of course, I first published the reality of cash flow woes, and potential industry risks in a piece in Forbes, on May 21, 2018.

According to the San Jose Mercury News:

(Brandon) Nelson’s parents are now certain their son did not have to die. They are on a crusade to reform what they see as a deadly, dysfunctional system — they’re meeting with legislators, hospital administrators, state regulators and others, all in an effort to spare other parents the pain they’ll carry for the rest of their lives.

(Above) The Nelsons (Allen and Rose) hold what remains of their son in an urn. Brandon Nelson fell victim to suicide in an understaffed and unlicensed licensed behavioral health facility in California. Source: San Jose Mercury News.

I spoke with Allen Nelson last night, and it was clear to him that,

https://seekingalpha.com/article/4229532-taxation-misrepresentation-u-s-mental-health-care-reform-deadly-economics 5/16 4/3/2019 Taxation And Misrepresentation: U.S. Mental Health Care Reform And Its Deadly Economics | Seeking Alpha we're starting to find out that the financial struggles were supressed and it appears that's what killed Brandon.

Well, similar to the Nelsons (above), that's exactly why we went to the U.K. We went to be advocates, and connect the dots ­­ to continue to persevere and tell this story.

I previously discussed the story of 20­year­old Joely Clements, which led to a lawsuit on UHS's hands, in which a nurse allegedly lured the recently discharged patient to his home, where she was found dead a few days later.

Madison Cross, 22

I previously mentioned the USA today story of Madison Cross, dead, in a center, at age 22.

She was found dead in an Arizona facility while detoxing from opioid addiction.

Madison Cross,

a 22­year old

woman from

Ohio died 3 days

into her stay at a

privately held

Arizona facility.

Also, the USA Today article mentioned Madison Cross left behind a 3­ year old daughter.

That center, Serenity Care Center, is part of a larger network of drug and alcohol rehabilitation centers in Arizona, California, and Florida founded by Bryan Deering Sr., who is also a call­center entrepreneur in Georgia and Florida.

Nathan Eaton, 32

https://seekingalpha.com/article/4229532-taxation-misrepresentation-u-s-mental-health-care-reform-deadly-economics 6/16 4/3/2019 Taxation And Misrepresentation: U.S. Mental Health Care Reform And Its Deadly Economics | Seeking Alpha The same article in USA Today discussed a 2013 incident at a Marin County, CA facility stated

Fellow residents at Center Point recognized that he was high and urged him to notify the residential facility's managers.

Rather than sending him to a drug­detoxification center or a hospital, staff chose to keep him at Center Point. His body was discovered in his room the next morning, according to the Center Point staff reports .

Nathan Eaton, 32, died in a treatment center in California in 2013. Source NBC Bay Area.

NBC Bay Area showed a local map of deaths in the Bay Area

In the Bay Area alone; deaths are rampant.

Finally, in that very same article, speaking about Mr. Marvin Ventrell and NAATP (National Association of Addiction Treatment Providers) the organization he leads, USA Today's Alejandro Gonzalez said,

https://seekingalpha.com/article/4229532-taxation-misrepresentation-u-s-mental-health-care-reform-deadly-economics 7/16 4/3/2019 Taxation And Misrepresentation: U.S. Mental Health Care Reform And Its Deadly Economics | Seeking Alpha His organization, which represents about 850 facilities in the USA, tightened its policies this year to require members to adhere to an updated code of ethics that prohibits such practices as "patient brokering" – paying recruiters to bring in patients who can generate lucrative insurance payments for services that must be covered under the Affordable Care Act.

Of course, before publishing was an avenue, I used my membership status to lodge a complaint against Acadia Healthcare Company, Inc.

1 /4

To date, it is unclear if they have or have not enforced their ethics code, especially on a firm that makes up a large portion of their membership dues. Their website reflects Acadia's facilities as active members to date.

We know that patient abuse is occurring in and about the U.K. and U.S., and if, or when one of the following occur, it's could translate into when "the bottom falls out."

https://seekingalpha.com/article/4229532-taxation-misrepresentation-u-s-mental-health-care-reform-deadly-economics 8/16 4/3/2019 Taxation And Misrepresentation: U.S. Mental Health Care Reform And Its Deadly Economics | Seeking Alpha 1. The NHS kills the funding and/or the 2008 Mental Health Parity and Addiction Equity Act is repealed (it's not really obeyed anymore, but is in some pockets ­­ which can lead to abuse).

2. The Leverage Returns to Eat these companies alive. Revenues are drastically down, as interest rates, on loans in which no principal is being paid, rise ­­ quickly.

3. A #metoo­type movement of parents whose children have died in a treatment center in America shows up on the Morning News Programs like Today, Good Morning America, or Fox and Friends.

Advocates Exist: They Need To Know

Advocates like the Nelsons are essential when tackling big issues, those that, through experience, are best suited to understand the complex needs every life with a mental illness has. Also, advocates with big names are needed as well.

Wheaties didn't become tasty until Michael Jordan was on the box, no matter how much healthier they are than Count Chocula. We need Michael Jordans on this Mental Health "Wheaties Box" of ourselves, Ian Birrell, The Nelsons and other smaller factions. Take Former Congressman Patrick Kennedy for instance.

Photo Right: Penn Little (right), with Fmr. Rep. Patrick Kennedy (D­RI). HLTH Conference, Las Vegas, Nevada, May 7,

2018. Source, Penn Little.

The former congressman said, this week in an interview with U.S. news, regarding improving the treatment of the mentally ill:

Until we get the political will to implement what we know works, we're not going to make any headway on changing the trajectory of this tragedy of cataclysmic proportions.

We believe a bit of humility and a joint­led "tea­party" effort with our former adversary and now a greatest foreign ally, the UK, could work in unison and compassionately get us both back on track.

Sheldon Adelson, CEO of Las Vegas Sands and Dr. Miriam Adelson MD. Source: Times of Israel. https://seekingalpha.com/article/4229532-taxation-misrepresentation-u-s-mental-health-care-reform-deadly-economics 9/16 4/3/2019 Taxation And Misrepresentation: U.S. Mental Health Care Reform And Its Deadly Economics | Seeking Alpha

In The US, a large­scale GOP benefactor too cares deeply about this subject. Mr. Sheldon Adelson, Chairman of Las Vegas Sands (LVS) and his wife Dr. Miriam Adelson MD, a licensed practitioner of addiction medicine, run the Sheldon and Miriam Adelson Clinic, a 501c3 in Nevada and Israel.

The Adelson's lost a son to the opioid epidemic. He was 34.

In the UK, The Duke (Prince Harry) and Duchess of Sussex (Meghan Markle) share the collective mutual vision.

The Duke; Prince Harry, has opened up publicly to lead by example, as a person with influence who has struggled with mental illness: and is choosing to talk about it, in hopes that will provoke others to do so as well.

https://seekingalpha.com/article/4229532-taxation-misrepresentation-u-s-mental-health-care-reform-deadly-economics 10/16 4/3/2019 Taxation And Misrepresentation: U.S. Mental Health Care Reform And Its Deadly Economics | Seeking Alpha

The Duke of Sussex (Prince Harry) accompanied by his wife, the Dutchess of Sussex (Meghan Markle) speaking out about Mental Health in Australia in October 2018. Source: The Short List.

It was a notable British journalist, and former speechwriter for Prime Minister David Cameron, Ian Birrell, who organized this very similar public statement. Birrell appeared to provide guidance, rallying the families of these living souls. This medium, no matter how you slice it ­­ a “tea party,” and a real call for reform.

He became a Michael Jordan on the "Wheaties Box" for these families.

When the advocates huddle and they will: enough will be enough. However, we need more Michael Jordans with louder voices and the willingness to step out and help repair the system and the lives of those relying on it for recovery.

Presently, most voices are suppressed by greed, stigma, and special interests.

The Political Fortress: Losing Credibility and Steam

We wrote a letter this past spring to the Senate H.E.L.P. Committee chair, Senator Lamar Alexander. We also notified the Foreign Relations Committee Chair, Bob Corker. As said previously in the November 16 article, these are a few of just many calls to regulators for action.

They’re both Tennessee Senators, the state where Acadia and AAC Holdings are headquartered. Interestingly, in 2015, Acadia hired Bryan Kaegi, as head of Federal Government Relations for Acadia. According to his bio on Acadia's website:

Prior to joining Acadia, Bryan served as Finance Director to U.S. Senator Lamar Alexander from 2005 to 2014.

The aforementioned UHS DOJ investigation was called for by my Chicago district's congressman Danny Davis (D­IL), and Rep. Kennedy’s cousin and current Representative, Joe Kennedy III (D­MA).

https://seekingalpha.com/article/4229532-taxation-misrepresentation-u-s-mental-health-care-reform-deadly-economics 11/16 4/3/2019 Taxation And Misrepresentation: U.S. Mental Health Care Reform And Its Deadly Economics | Seeking Alpha joe kennedy response to paul ryan mercy comment

Rep. Joe Kennedy III (D­MA) speaks out against limiting reimbursements for mental illness. Source: YouTube.

Congressman Kennedy has not responded to multiple meeting requests earlier this year.

After briefing Congressman Davis' chief of staff Yul Davis via telephone in May, and his staff, in the office in Washington in June, I've failed to receive a response since. We discussed these abuses specifically. Davis stated he would check his schedule but hasn't responded since June 12, 2018.

The "Big Three"

There are three major public U.S. Companies: Universal Health Services (Nasdaq: UHS) and Acadia Healthcare Company, Inc. (Nasdaq: ACHC), among a few others.

In July of 2015, all three public behavioral healthcare companies: Universal Health Services (Nasdaq: UHS), Acadia Healthcare Company (ACHC), and American Addiction Centers, aka, AAC Holdings (NYSE: AAC) all enjoyed a combined market capitalization of $20.51 billion. UHS is not "pure play" behavioral health like ACHC, and AAC. UHS also has more hard assets and proven care to provide.

Since July of 2015, publicly traded behavioral healthcare providers seem to be in quicksand doused with hot water. The "Big Three," as far as their U.S. operations alone are concerned, have been subjected to excessive litigation (500+ pages worth), federal investigations, and in one case: a murder indictment.

Since the murder indictment in August 2015, propensity for third­party payor propensity to trust this industry has clearly diminished, and the insiders have headed for the exit as well.

https://seekingalpha.com/article/4229532-taxation-misrepresentation-u-s-mental-health-care-reform-deadly-economics 12/16 4/3/2019 Taxation And Misrepresentation: U.S. Mental Health Care Reform And Its Deadly Economics | Seeking Alpha

UHS

data by

YCharts

The Math

The U.K. has presented easy money. These same type of legislative "tailwinds" to some, or "disasters" to others, invited these investments in the US starting around 2011. The industry was small, but entitlements grew it to a level the New York Times called "Giant."

Thus, insurers saw overleverage, private credit, and fraud germinate a course weed as opposed to a flower. Prior to 2015, most US payors complied with a 2008 law that spurned the free money. It wasn't worth fighting it, until the day the music died: August 4, 2015: the day AAC was exposed.

AAC

American Addiction Centers, the first public company ever indicted for murder, was acquitted. However, now they're low on cash, have little access to debt, and have seen a 2200% increase in their debt/equity ratio over the trailing 12 months. In short, that's not good.

It seems the AdCare acquisition maxed out their credit card, creating massive goodwill and very little free cash flow. They have seen interest expenses rise 2.6x and that only will worsen, especially with yesterday's rate hike.

It's now challenging to accept lives into their care, and consider it humane. To verify this, with a clinical point of view of someone on this side of the pond, Carey Davidson, MAC, BRI­II, CAI, a trained behavioral health crisis­management expert who works with families and lives needing care, said,

In regards to AAC, while their abysmal financials create clinical risk (posed to staff and lives in care), based on quality, I would always suggest to a family if they have any other options, take it. https://seekingalpha.com/article/4229532-taxation-misrepresentation-u-s-mental-health-care-reform-deadly-economics 13/16 4/3/2019 Taxation And Misrepresentation: U.S. Mental Health Care Reform And Its Deadly Economics | Seeking Alpha As of December 15, 2018, that total market capitalization for the big three companies now sits at $13.913 billion, goodwill and intangible asset levels are a combined $6.81 billion, and Annualized Net Debt is $7.24 billion. Also in the trailing twelve months dating back to December 15, 2017, they have not produced a combined positive metric for repayment of debt, however, have increased combined total debt by $17 million since.

Interest expenses have risen since January 1 and will continue to do so hindering the above companies ability to pay their debts even further.

UHS

According to UHS financial statements, as the old saying goes, “you can’t get there from here.” Even without adjusting book net worth, the UHS stock trades at 2.2x book value. If you subtract goodwill, the multiple is almost 7x adjusted­book value.

Again, even if you want to make the case that the stock is worth the “hard” assets, they are only $4.7 billion (plus $1 billion in unpledged Accounts receivable) and are probably used as collateral for the senior secured notes (totaling $1.4 billion). In other words, there is not a lot of value for equity holders on the current balance sheet. Almost all the value rides on future profitability growth or a buyout and the UHS DOJ overhang seems to be discounted by the market.

Cash on Hand is Sparse and Unknown in a "Zombie Culture"

Industry­wide, in US Healthcare, Accounts receivable in this field is another contributor to the growing "Zombie" Culture.

Glenna Fulks, a CPA and former auditor for Price Waterhouse, presently manages the finance and accounting at Columbia Plastic Surgery, the Maury County, Tennessee practice of her husband, K. Dwayne Fulks, MD. In terms of accounts receivable in US healthcare operations, Fulks noted,

If you're not getting paid in the first 90 days, in healthcare, you should assume you're never getting paid.

The largest majority of current assets is accounts receivable. The largest majority of these receivables have lapsed beyond 90 days. However, it is likely they are collateralized.

ACHC

As for Acadia Healthcare Company, Inc. (Nasdaq: ACHC), my November 16th article speaks for itself, in all its comprehensive nature. I divulged Tuesday that it's nearly completely institutionally owned.

What’s the Upside in the UK?

The simple answer is time and liquidity.

The costs are too high (due to easy money), and new entrants emerging in the form of providers or vendors. The NHS is paying $1 million USD per­annum to lock away autistic children, it's the easiest money in which a starved industry must pray.

https://seekingalpha.com/article/4229532-taxation-misrepresentation-u-s-mental-health-care-reform-deadly-economics 14/16 4/3/2019 Taxation And Misrepresentation: U.S. Mental Health Care Reform And Its Deadly Economics | Seeking Alpha While in England, we co­interviewed Mark Gilman a former Substance Abuse expert, formerly with UK Public Health and the National Treatment Agency for Substance Misuse, and now Managing Director of Discovering Health U.K. Gilman stated.

the reason Acadia is adding beds here is for the autism provisions. You can’t make money here in substance abuse centers. We’ve already discovered, those don’t work.”

Carey Davidson chimed in as well, to give the American view;

It’s hard to believe that the abuse that is happening in the name of 'behavioral health' in modern civilized nations today. To know that the abuse of venerable people and their families is simply profit driven is horrifying.

The Reality

Like precursors to the Boston Tea Party, this is driving up the tax on all of us, driving down the quality of care, and driving our populace away from trusting a system of care, or investment for that matter.

Putting a mandate to pay on a $3 trillion health insurance industry for a lifetime disease with no cost­effective affordable solution, and then covering everyone, provides access­­and inflation. As Ron Paul predicted in the following clip: we dumped it on the government, it became a bureaucracy, and then inflation is added­in via asset purchases.

Should society let uninsured die?

2011 Republican Presidential Debate, featuring Ron Paul, and moderator Wolf Blitzer. Source CNN/YouTube.

Enough is most definitely, enough. It appears time to dump this economic conundrum overboard.

After all, a proven cost­effective solution to mental and behavioral health care is a critical need of two sister nations, once adversaries, transformed, into what Sir Winston Churchill deemed a: https://seekingalpha.com/article/4229532-taxation-misrepresentation-u-s-mental-health-care-reform-deadly-economics 15/16 4/3/2019 Taxation And Misrepresentation: U.S. Mental Health Care Reform And Its Deadly Economics | Seeking Alpha special relationship

If we have an international problem, then let's work with a friendly nation and as many friendly people to find an international solution for the lives, including children separated from their families, needing care and investors needing their pension.

Disclosure: I/we have no positions in any stocks mentioned, and no plans to initiate any positions within the next 72 hours. I wrote this article myself, and it expresses my own opinions. I am not receiving compensation for it. I have no business relationship with any company whose stock is mentioned in this article.

Additional disclosure: Financial Data all From 10K, and 10Q Sources for ACHC, AAC, and UHS from 2015 to 2017

I attempted to contact Congressman Kennedy, former and present, Congressman Davis’ office, Both Senators Corker and Alexander, Acadia Healthcare, American Addiction Centers, and UHS for comment, as of yet none have replied but if/when they do I will update the article with any comment.

Comments (1)

NBR Market Monitor Monitor I am not sure where health care for profit works for the masses?

26 Dec 2018, 03:35 AM

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Short Ideas | Healthcare

Kids As 'Cash Cows': Abuses At U.K. Mental Health Centers, Including Acadia's

Dec. 13, 2018 5:48 PM ET3 comments | 3 Likes by: Penn Little Summary

The UK's House of Commons held hearings Wednesday on the deplorable treatment and involuntary commitment of children with mental health disorders ­­ some at facilities operated by Acadia Healthcare.

Families gave shocking testimony about children being locked away, isolated and fed through holes ­­ stunning lawmakers and stirring calls for immediate reform.

Acadia reported $756 million in 2018 Q1­Q3 revenue from its UK facilities (which are government­funded) ­­ a massive portion of their outward financial health that could soon be threatened.

LONDON ­­ And you thought the only news out of Parliament on Wednesday was about Brexit.

Matthew Garrett, 18 (above)'s mother attended the hearing. Source: The Daily Mail.

In a stunning hearing here that left onlookers in tears and lawmakers aghast, families of children with autism and other mental health disorders testified about their kids' deplorable treatment at inpatient facilities funded by the UK government. One girl was being fed through a six­inch square hole in a wall. Others were physically and psychologically abused, while one father described his daughter and other patients like her as "cash cows."

https://seekingalpha.com/article/4228230-kids-cash-cows-abuses-u-k-mental-health-centers-including-acadias 1/5 4/3/2019 Kids As 'Cash Cows': Abuses At U.K. Mental Health Centers, Including Acadia's - Acadia Healthcare Company, Inc. (NASDAQ:ACHC) | Seeking Alpha But this was not just an across­the­pond story: Some of those facilities are run by Acadia Healthcare Company (Nasdaq: ACHC), which generated $756 million of revenue from its UK operations in the first three quarters of this year. As lawmakers demanded that the nation's government­funded health care system better oversee its massive spending in the mental­health sector, it was clear that Acadia's vital overseas income stream could soon be threatened. It is unclear whether any of the few individuals providing testimony were discussing Acadia owned centers, however, Ian Birrell specifically named Joey Jacobs and Acadia as owners of facilities allegedly performing this gruesome practice.

We are shining a spotlight on the human rights of individuals who are being shut away and made invisible," said the Hon. Harriet Harmon, the chair of the House of Commons' Joint Committee on Human Rights. A full report of the hearing can be found here. The hearing focused on the general practice by providers, but chose to avoid singling out providers individually.

Afterward, I asked the father of one young woman detained and abused by this system ­­ identified during testimony only as "Bethany" to protect the family's privacy ­­ about the United States's financial ties to the situation.

People like Bethany are simply a number to them," he said. "They're the easiest cash cows available, to hit numbers, for execs to get their bonuses."

I have personally left several messages at the Acadia Healthcare Company Inc. requesting comment for this article. None has been returned.

12/12/18 Coverage of Parliament's Human Rights Autism Crisis Hear…

Katie Mikles and I summarize the hearings from the House of Commons on 12/12/18

An Ongoing Saga

Wednesday formed yet another chapter in the ongoing saga regarding Acadia's financial practices and overall health. Last week, I reported on witnesses of abuses of children across the US, ranging from a former staff member, a former patient, and a former Acadia

https://seekingalpha.com/article/4228230-kids-cash-cows-abuses-u-k-mental-health-centers-including-acadias 2/5 4/3/2019 Kids As 'Cash Cows': Abuses At U.K. Mental Health Centers, Including Acadia's - Acadia Healthcare Company, Inc. (NASDAQ:ACHC) | Seeking Alpha executive. These practices included the manipulation of insurance benefits, resulting in the exhaustion of lifetime health insurance benefits of American families. Over 600 pages of litigation and inspections are very damning evidence here.

I also noted how the UK's Daily Mail, led by reporter Ian Birrell, was reporting on the perilous conditions faced by UK children with autism and other mental health conditions. Again, Birrell listed Acadia Healthcare and Universal Health Services as two U.S. companies taking the bulk of the £730,000 per patient annually ­­ yes, $1 million apiece ­­ in government money, to any company offering these services that is contracted with the NHS, according to Bethany's father. Acadia has 13 facilities designed to involuntarily house and detain patients with autism and learning disorders, according to the Daily Mail.

Shortly after Acadia went public in 2011, all of its revenue came from 33 US facilities with 2,150 licensed beds. Propelled by industry tailwinds and rapid debt­fueled acquisitions ­­ including expansion into the UK and Puerto Rico, ballooning the company to its current 586 clinics and approximately 18,000 licensed beds ­­ Acadia generated impressive returns and revenue growth through 2015. (Revenue grew from $215 million in 2011 to $1.8 billion ­­ almost doubling annually.) Their stock skyrocketed from $8 to $80.

But while revenue was high, free cash flow was lacking. From 2011­2015, according to the Securities and Exchange Commission, and the 10K Filings made by Acadia Healthcare in those years, Acadia had a negative $60 million in free cash flow. Then, Subsidies began dropping, headcounts shrunk and fraud began being exposed in the news media and elsewhere. Shares of Acadia are down 52% as concerns over their business model and debt load have been exposed.

As a lifeline, Acadia has turned to the UK. The company made a $2.2 billion acquisition of UK­based mental health provider Priory Group in January 2016. As of today, Acadia operates roughly 586 facilities with more than 300 of those facilities located in the UK, serving 30,000 lives per year ­­ which generates 36% of their total revenue, all from a government­run health­care system that this week began to wake up.

https://seekingalpha.com/article/4228230-kids-cash-cows-abuses-u-k-mental-health-centers-including-acadias 3/5 4/3/2019 Kids As 'Cash Cows': Abuses At U.K. Mental Health Centers, Including Acadia's - Acadia Healthcare Company, Inc. (NASDAQ:ACHC) | Seeking Alpha

(Photo Above): Katie Mikles (left), myself (right), and Kulraj Sehmar (middle) who was raising money to fund proper autism care in the UK, while taking the Tube to the hearings in Westminster

Last month, I published my findings from a 14­month investigation of Acadia, including the fact that the company is named as a plaintiff in dozens of lawsuits alleging a wide range of patient abuses. Its officers have jumped ship over the last three years, taking billions in value with them. The overall insider ownership reduced from over 30% in early 2015 to just above 2% today.

On Wednesday here in Parliament, it only got worse. The attention given to treatment at UK facilities in general, many run by Acadia and UHS ­­ and the outrage it will surely catalyze ­­ endangers not just patients, but the companies themselves.

Disclosure: I/we have no positions in any stocks mentioned, and no plans to initiate any positions within the next 72 hours. I wrote this article myself, and it expresses my own opinions. I am not receiving compensation for it. I have no business relationship with any company whose stock is mentioned in this article. https://seekingalpha.com/article/4228230-kids-cash-cows-abuses-u-k-mental-health-centers-including-acadias 4/5 4/3/2019 Kids As 'Cash Cows': Abuses At U.K. Mental Health Centers, Including Acadia's - Acadia Healthcare Company, Inc. (NASDAQ:ACHC) | Seeking Alpha Additional disclosure: I personally funded the travel to the UK, and the ancillary costs therewith

Comments (3)

Penn Little, Contributor Author’s reply » seekingalpha.com/...

@Jackboot and @HunterKiller89 this may give a more (appears as) view

14 Dec 2018, 07:52 PM

HunterKiller89 OP, do you have any places you recommend I check out to learn more about this?

14 Dec 2018, 11:42 AM

Jackboot How on earth did this situation happen ­ I am a capitalist but this sucking up of money from the public purse is obscene. Whatever the old system was before big money got involved ­please bring it back.

14 Dec 2018, 11:23 AM

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Profiteers of Misery: Parents slam Site Enter your search Web health fat cats in UK and US who are ADVERTISEMENT raking in as much as £730,000Evidence Compilation annually for every autistic child they ‘lockInhumane up’ in Sectioning secretive & Long Term secure Detention Of Lives With Autism and Learning Disorders psychiatric units Seven providers charging taxpayers £730,000 a year for locked up patients The patients, with autism and learning difficulties, are held in psychiatric units The units are controversial as they are both very secure and extremely secretive Furious families say that the medical bosses are all ‘profiteering from misery’

By IAN BIRRELL FOR THE MAIL ON SUNDAY PUBLISHED: 18:23 EDT, 10 November 2018 | UPDATED: 13:22 EDT, 19 December 2018 2.3k 59 shares View comments

A cluster of ‘fat cat’ private operators is creaming off hundreds of millions of pounds from the NHS after muscling in on the cruel but lucrative trade in locking up people with autism and learning disabilities.

The Mail on Sunday can reveal that seven providers are charging taxpayers up to £730,000 a year for each patient held in controversial and secretive secure psychiatric units. https://www.dailymail.co.uk/news/article-6375895/Parents-slam-health-fat-cats-getting-730-000-annually-autistic-child-lock-up.html 1/48 4/3/2019 Parents slam health fat cats getting up to £730,000 annually for every autistic child they ‘lock up’ | Daily Mail Online

There are 2,375 people with autism and learning disabilities held in assessment and Like Follow treatment units (ATUs) at a cost of about half a billion pounds a year, with scores Daily Mail Daily Mail more held in other secure units. One man alone is thought to have cost taxpayers Follow Follow more than £10 million after being held against his family’s wishes for more than 17 @DailyMail Daily Mail years. Follow Follow @dailymailuk Daily Mail

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'I will be replacing my ENTIRE wardrobe': The $11 ultra­flattering Amazon leggings +6 that shoppers are going crazy for SPONSORED £39,528,000 said to have been made in a single year by Alan Miller boss of US giant Universal Health Services. Its UK operations are run by Cygnet Healthcare, whose best-paid director Mel B emerges with earned £508,000, a healthy £162,000 rise on the previous year close friend Gary Madatyan as she throws a party for Two giant US healthcare companies, a global private equity group and a Guernsey- daughter Angel's based hedge fund have joined two British firms and a major charity operating in the 12th birthday... amid 'epic rows' with Geri sector and are giving their bosses massive pay packages. Horner over 'lesbian fling' bombshell https://www.dailymail.co.uk/news/article-6375895/Parents-slam-health-fat-cats-getting-730-000-annually-autistic-child-lock-up.html 2/48 4/3/2019 Parents slam health fat cats getting up to £730,000 annually for every autistic child they ‘lock up’ | Daily Mail Online They are expanding operations despite Government pledges to move people with Peter Dinklage autism and learning disabilities out of secure units and into the community after a arrives with his wife Erica at the Game of series of abuse scandals. Thrones final season premiere in New York City SHARE THIS RELATED ARTICLES Peter hit the red carpet ARTICLE with his wife Erica 'Soon it will be me next Robbie Williams gets Sophie Turner gets to Harry and Megssy the underground pool pulses racing in will be gone':... he craved… by... plunging dress as she wraps her arms around fiance Joe Furious families says they are ‘profiteering from misery’ and Labour is demanding an Jonas on red carpet of Game Of Thrones urgent statement from Health Secretary Matt Hancock after an investigation by this premiere newspaper found half-a-million-pound pay packages and profit margins as high as 31 Game Of Thrones per cent. ‘It’s nothing short of a national scandal that private companies are being star Maisie Williams allowed to hive off millions of pounds of NHS money to detain people with learning dazzles in a pleated pearl embellished disability and autism, some in such monstrous conditions,’ said Barbara Keeley, dress at star­studded premiere of final Labour’s Shadow Minister for Mental Health and Social Care. season

Two weeks ago, we exposed how hundreds of people with autism and learning Rob Gronkowski's model girlfriend disabilities are being routinely abused in some facilities, confined in horrific Camille Kostek seclusion cells, fed through hatches like animals, aggressively restrained and channels Margot Robbie in a skimpy forcibly drugged. hot pink mini­dress as she poses for a The revelations led Mr Hancock to order an urgent inquiry into the use of VERY raunchy Wolf of Wall Street­ segregation and long-term seclusion. The Equality and Human Rights Commission inspired shoot warned the NHS could face a formal investigation for human rights abuses of Emily Ratajkowski vulnerable people. Now The Mail on Sunday can reveal that firms in this sector reveals her sculpted include: abs in a black halter top and low­cut jeans as she hits the An American healthcare giant whose boss earned £39.5 million in one year, streets of New York Flaunts her figure despite his firm facing allegations of fraud and ‘preying’ on vulnerable people to Will Smith checks boost profits in secure units; off item from his Another huge US firm that handed five executives almost £15 million last year and bucket list as he dances in Bollywood has been snapping up British operators, including the Priory Group, famous for movie after also treating celebrities; immersing himself in Indian culture A controversial British company that paid one director more than £1 million over Bridget Moynahan two years despite claims that their staff failed to stop patients self-harming, with reflects on the one patient later dying, and allegations of a sex assault in a hospital; scrutiny she endured after her split from Groups controlling firms that run a secure unit in Norfolk which are owned by two Tom Brady and how they manage to families who pocketed £2,261,782 in pay and dividends over the past year; successfully co­ Another British firm, backed by private equity and formed only 23 months ago, parent their son which runs 55 units and turns over £176 million, with 31.4 per cent profit margins; Jersey Shore's Ronnie Ortiz­Magro A charity that is Britain’s biggest provider of specialist psychiatric care that gave its says daughter Ariana departed chief executive nearly £1 million over the past two years, despite being at 'makes everything have a purpose' as the centre of claims that it fed teenagers in solitary confinement through hatches. he wishes her a happy 1st birthday Angry families complain their children are seen as ‘cash cows’ and are milked by Snooki enjoys private providers that can charge the NHS more than £14,000 a week and whose Disneyland own staff help make decisions on sectioning people under mental health laws. babymoon with her family as she prepares to welcome ‘It’s an outrage given the numerous cases of neglect, abuse and deaths of vulnerable baby number three people in their care,’ said Isabelle Garnett, an autism activist whose teenage son Snooki enjoyed the Disneyland babymoon suffered badly during two years detained in secure units.

Emma Roberts dons This newspaper has revealed families are having teenagers and young adults with leggy sheer black autism and learning disabilities taken away and stuck in supposedly short-stay ATUs dress and top bun for Spanish brand Tous https://www.dailymail.co.uk/news/article-6375895/Parents-slam-health-fat-cats-getting-730-000-annually-autistic-child-lock-up.html 3/48 4/3/2019 Parents slam health fat cats getting up to £730,000 annually for every autistic child they ‘lock up’ | Daily Mail Online and secure units for many years. Jewelry launch in Madrid The new face of the What is autism? By The National Autistic Society luxury brand

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£1,059,000 given over two years to the highest-paid director at Huntercombe. The chief Ryan Seacrest can executive is Valerie Michie, above. Huntercombe is owned by a Guernsey hedge fund and be deposed in Blac provides 91 beds for people with autism and learning disabilities Chyna lawsuit over Kardashian reality show as he has Darren Slater, who has autism and learning disabilities, has been held for 17 years, 'superior and unique' despite having his own house bought with NHS compensation for a birth mistake. knowledge why it was cancelled https://www.dailymail.co.uk/news/article-6375895/Parents-slam-health-fat-cats-getting-730-000-annually-autistic-child-lock-up.html 4/48 4/3/2019 Parents slam health fat cats getting up to £730,000 annually for every autistic child they ‘lock up’ | Daily Mail Online ‘There is a lot of money being made out of all this,’ said his father Brian. Jessie J and boyfriend Channing Tatum enjoy a late Another mother said she was forced to feed sweets to her teenage son with autism night pool party with through metal bars after seeing him transported between secure units in a cage in a pals during Mexican getaway as they van. ‘I was so angry but so powerless,’ said Julie Newcombe, whose son is now free. attempt a She set up Rightful Lives with others to expose human rights abuses. ‘How can the synchronized swimming routine Government waste millions imprisoning children and tell families there is no money for support at home? Kourtney Kardashian tells Scott Disick she ‘There is a huge conflict of interest within the private sector because heads on beds doesn't want to give equals money in the bank, which means profit becomes the ultimate barrier to him 'mixed messages' by inviting discharge.’ him on a trip as he shoots back he's The NHS spent £477.4 million in 2016 on people with autism and learning disabilities happy with Sofia just in ATUs, which are meant to assess and treat psychiatric needs, rather than Barbra Streisand shares snap with Kris resolve care shortfalls. Instead, people are becoming trapped, often from Kristofferson as they adolescence, in an abusive, medicated and stressful system that can make enjoy A Star Is Born reunion: 'Stay tuned' conditions worse. She won an Oscar for Evergreen Ministers have promised repeatedly Bob Saget tweets since the 2011 Winterbourne View abuse The NHS spent £477.4 and DELETES cryptic scandal to move such people out of “ joke about 'lying'... million in 2016 on people the same day Fuller unsuitable secure units and into with autism and learning House co­star Lori community care. Many units rely on Loughlin appears in disabilities just in ATUs, court for college carers paid only marginally above which are meant to assess bribery scandal minimum wage levels. Yet the number of and treat psychiatric needs, RHOBH's Camille adults with autism and learning rather than resolve care Grammer begins repairs on Malibu disabilities locked up in ATUs fell only shortfalls mansion destroyed slightly over the past three years, while by Woolsey Fire as ” she continues to live the number of children more than in trailer: 'It's been a doubled. Last year, there were 28,880 restraint incidents in England alone. nightmare' Brie Larson One reliable source confirmed he had seen confidential data showing a health body celebrates Captain paying average rates in 2016 of £2,007 per person a day. Marvel hitting $1 billion in global box office as she says it Over the past decade, the proportion in privately-run beds has soared from one-fifth has been a pleasure to more than half, as new players such as Acadia, a Tennessee-based healthcare bringing Carol Danvers to life group, moved into the profitable trade in vulnerable people. Brie Larson celebrates Captain Marvel

Acadia spent £1.3 billion on the Priory Group two years ago. It now has 61 hospitals in NeNe Leakes' Britain – ten holding people with autism and learning disabilities in secure units and husband Gregg breaks down in tears three ATUs – among its 586 facilities and 18,000 psychiatric beds worldwide. Chief as she says goodbye executive Joey Jacobs was reported to have earned £7.5 million last year alone in to nurses after his completing SIX salary, bonuses and stock. months of chemo to stop cancer One mother I spoke to was close to tears over treatment of her child in a Welsh unit Jennifer Lopez pulls run by Priory. ‘I’m fighting for her life,’ said Gillian Mead, whose daughter Lee, 43, off an Ariana Grande was sectioned for the first time in April and claims to have been often restrained. style ponytail as she confesses Alex ‘Lee has lost about five stone, and says “I want to come home” all the time. It’s awful.’ Rodriguez at first seemed 'too perfect' which gave her pause

Joy Behar 'spread a rumor that Star Jones stepped on and killed a mouse at The View' as Sherri Shepherd reveals Barbara Walters made her cry for years https://www.dailymail.co.uk/news/article-6375895/Parents-slam-health-fat-cats-getting-730-000-annually-autistic-child-lock-up.html 5/48 4/3/2019 Parents slam health fat cats getting up to £730,000 annually for every autistic child they ‘lock up’ | Daily Mail Online Meghan WON'T pose for an 'on the steps' moment after leaving hospital with baby because it doesn't fit with her 'feminist world view', experts claim

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Jane Fonda, 83, says 'I've had a lot of cancer' as she talks about her battle, her +6 'failing' love life, osteoporosis (and a £362,000 collected by the highest-paid director at sector newcomers Elysium Healthcare last very racy revelation) year. The chief executive is Joy Chamberlain, above. Elysium is backed by BC Partners, a Sopranos prequel private equity group, through low-tax Luxembourg, and operates in 55 UK locations gets underway as Alessandro Nivola Last year, the Priory Group made £62.2 million profit, with most revenues funded by and Michela De Rossi are spotted on day taxpayers. It handed one director £243,000 in remuneration. ‘The number of people one of filming with learning disabilities and autism placed in our secure hospitals by NHS England Newark amounts to just two per cent of Priory Group beds and this number is falling,’ said a 'Mommy's dead': Kim Kardashian spokesman. He added that patient safety and family engagement were a priority and reveals daughter that all units were subject to regular official inspections. North West, 5, staged dark April Fool's prank on Kanye Universal Health Services is another huge US healthcare firm snapping up British West psychiatric services. In June, it bought the Danshell Group, specialising in autism The 38­year­old reality star revealed to Elle and learning disabilities at its 25 facilities. Universal’s founder is Alan Miller, reportedly the richest chief executive in the hospital industry – in 2016 he collected Nipsey Hussle's music tops the charts more than £39 million in pay, bonuses and stock. Yet in 2016, a year-long Buzzfeed with his 2018 single investigation in nine US states accused the firm of pressuring staff to fill beds in Victory Lap #1 on iTunes after he was hospitals for financial gain, even by falsely making patients appear suicidal. fatally shot in LA Dominated the charts The claims were strongly disputed by the firm. since his death Angelina Jolie Its British operations are run by Cygnet Healthcare, which boasted in recent announces her son Maddox, 17, will be accounts of earning revenues from 220 NHS purchasing bodies – a rise of 44 in a attending college in year – and almost doubling income as profits surged to £40.4 million. the fall: 'I am nothing but proud and I look forward to all he will The fast-expanding firm gave its highest paid director a £508,000 pay package, a do' £162,000 increase on the previous year. Yet at one unit, staff injected patients in Tiffany Haddish, face-down restraints with medication, against official guidance. A secure unit in Jennifer Hudson and Woking was put in special measures after 24 serious incidents in a children’s ward, Issa Rae bring the glamour to including sexual assault and staff failures to stop ‘significant’ self-harm including CinemaCon Day 3 cutting and ligature-tying. Film industry event held annually in Las Vegas

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£2,262,000 pay and dividends collected last year by two families from groups owning firms Kit Harington is forced to recreate running a secure unit in Norfolk, and headed by chief executive Tugay Akman, above. The famous Game Of father of one man with autism there claims his son often sleeps 15 hours a day due to over- Thrones scenes by sedation Leslie Jones in hilarious new promo for Saturday Night A Cygnet spokesman said the Woking unit was now judged ‘good’ with safe care, Live while the firm was making ‘significant investments’ to ensure people with autism Ivanka will go on were treated in non-hospital environments if possible. four­day African tour to promote 'women's British firms include Huntercombe, which ran the ATU – since closed – in which one empowerment' and says she is 'excited' young woman was fed so much in seclusion that she died from obesity in 2013. The by trip to Ethiopia and Ivory Coast this https://www.dailymail.co.uk/news/article-6375895/Parents-slam-health-fat-cats-getting-730-000-annually-autistic-child-lock-up.html 7/48 4/3/2019 Parents slam health fat cats getting up to £730,000 annually for every autistic child they ‘lock up’ | Daily Mail Online firm handed its highest-paid director £1,059,000 over the past two years – it is not month known if this is chief executive Valerie Michie. Love & Hip Hop star Mally Mall is arrested Huntercombe runs ten hospitals, of which three units with 91 beds focus on patients for 'exotic animals and human with autism and learning disabilities. trafficking' after his California home was An inspection earlier this year into one of them, the 40-bed Cedar House in Kent, raided by an FBI SWAT team found services and safety ‘required improvement’. Serious incidents registered Stranger Things star included three cases of patients swallowing batteries, two other cases of self-harm David Harbour has and an allegation of sexual assault, plus use of ‘heavily soiled’ bed linen. One man been cast alongside Scarlett Johansson also died in hospital after sticking batteries up his nose. in Marvel's Black Widow Pair are teaming up

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How marriage turned Geri into Posh Spice: Gone is the +6 pneumatic cleavage and skimpy dresses, £929,000 paid over two years to Gil Baldwin, former chief executive at St Andrew’s step forward the Aga­ baking, tweed­ Healthcare, a specialist psychiatric provider accused of holding teenagers in seclusion and wearing tycoon's wife feeding them through hatches. It handed six-figure salaries to 73 employees Will Smith gives his Huntercombe is owned by hedge fund Terra Firma, registered in low-tax Guernsey stunt double a break as the star fights and run by Guy Hands, one of Britain’s richest men, worth an estimated £265 million. biker on Bad Boys For Life set ‘We ensure no patient in our hospitals is isolated,’ said a spokesman, adding there Actor apparently had been no serious injuries caused by ‘rarely-used’ restraint over the past year. decided to perform a fight scene himself

The spokesman added: ‘We are committed to supporting safe discharge to Gisele Bundchen community-based support services. However, we have no influence over the looks flawless as she poses in an eye­ availability of those services.’ catching yellow jumper at her book The family-owned Jeesal Group runs Cawston Park in Norfolk. It holds one man launch in Germany Model, 38, looked whose father told me he is so powerfully sedated, he sleeps sometimes 15 hours a chirpy as she signed day – and one source claimed such care is costing the NHS £12,000 a week. copies Backstreet Boys... Accounts indicate two families called Akman and Subramaniam own one group the next generation! Brian Littrell's 16­ holding company and shared £1.59 million last year in dividends, with another year­old lookalike £52,684 paid to directors and £128,998 to family members. son will be opening act on upcoming tour A linked company run by one of the founders paid her another £81,000 and £415,000 in dividends to five shareholders sharing her name, plus one trust. Mike 'The Situation' Sorrentino is enjoying prison as he The firm did not respond last week to requests for comment. Previously it said hits gym and plays ‘typical’ rates for Cawston Park were £4,242 a week and the holding company paid bingo says Jersey Shore co­star chief executive Tugay Akman £1,596, with his family taking dividends of £60,000 last Snooki: 'He's having year. the time of his life' https://www.dailymail.co.uk/news/article-6375895/Parents-slam-health-fat-cats-getting-730-000-annually-autistic-child-lock-up.html 8/48 4/3/2019 Parents slam health fat cats getting up to £730,000 annually for every autistic child they ‘lock up’ | Daily Mail Online ‘Since 2014, we have discharged over 100 people back into the community,’ said Serena Williams serves up a stylish business development director Andrew Gordon, who insisted that the firm’s margins look in shirt dress were 9.62 per cent last year. Other (but flashes a thigh­ ful after button comes undone) players moving into the sector include Elysium, which is backed by private equity The leggy looker group BC Partners through a firm in Luxembourg. It already operates at 55 English flashed a lot of thigh locations despite only launching in December 2016, and paid its three directors Jerry Hall called £726,000 last year. Rupert Murdoch's children in a 'panic' and told them to Three directors of Cheswold Park Hospital in Doncaster, which has been accused of come see their father over-use of restraint and medication errors, are also being investigated by the tax one last time after he was airlifted off so's authorities over £24.9 million payments to a secret trust in Belize over seven years. yacht following bad fall

St Andrew’s Healthcare is at the centre of some of the most distressing claims, Reba McEntire says including the case of 17-year-old Beth, locked up and fed through a hatch. Although she found love when she 'was not looking' a charity, its latest accounts show it paid £100,000 or more to 73 employees last with retired oil year and shared £1,736,000 among seven directors. geologist ... four years after painful divorce Anne Longfield, the Children’s Commissioner for England who has responsibilities Singer opened up for children in care, has written to the NHS asking how many children have been Margot Robbie placed with the organisation. According to her data, 193 children were admitted to looks happy leaving its low-secure unit in the year leading up to August 2017. The charity – which has a Hollywood restaurant as she has spent £45 million building the biggest adolescent unit in Europe at its Northampton rare break from hospital – declined to comment. playing Harley Quinn in Birds Of Prey movie The Mail on Sunday has seen a letter from Norman Lamb, Care Minister in the ADVERTISEMENT Coalition, to a housing charity in May 2013 insisting Ministers were ‘committed’ to ensure ‘everyone inappropriately in hospital will move to community-based support Imagine Dragons no later than 1 June, 2014.’ singer Dan Reynolds reveals his wife Aja Volkman is expecting Yet only last week a Government inspector backed the opening of a 54-bed facility in their fourth child... three months after Wrexham operated by ASC Healthcare, which is controlled through a Jersey firm. repairing their marriage ‘The huge sums spent on these places would be far better used to support people to Rihanna turns live longer, fuller and healthier lives in their local communities,’ said Chris Hatton, heads in a plunging professor of public health and disability at Lancaster University. off­the­shoulder neon yellow silk mini dress and matching sunglasses at her Fenty Beauty launch How just one patient cost YOU in London Miley Cyrus seems £10,000,000 to have a ball on the wild rides at Disneyland... after No case better illustrates the poignancy of this issue – and the sums spent– revisiting her Disney character Hannah than that of Tony Hickmott. He has been locked up for almost 18 years at Montana Cedar House, a 40-bed secure unit near Canterbury owned by Huntercombe, Still a child at heart despite his mother Pam saying he never harmed anyone when living at home. Lady Amelia Windsor looks stylish Pam says she was told in 2003 it was costing £600,000 a year to keep her son as she attends the private viewing of in conditions she describes as ‘worse than a prison’. Since then, fees are likely new V&A exhibition to have risen. But even if they had stayed the same, this one case has cost on swinging sixties guru Mary Quant taxpayers more than £10 million. ‘He could have been in the best hotel for this money,’ says Pam. ‘He’s only got autism but he’s been left so damaged by this.’ Cape Queen! Maxima stuns in smart pencil skirt as A recent inspection found safety and services at Cedar House needed she meets with care organisations to improvement. Huntercombe says the typical length of stay there is six to 12 discuss Dutch months and fees are agreed with the NHS. healthcare innovation Serena Williams gushes about https://www.dailymail.co.uk/news/article-6375895/Parents-slam-health-fat-cats-getting-730-000-annually-autistic-child-lock-up.html 9/48 4/3/2019 Parents slam health fat cats getting up to £730,000 annually for every autistic child they ‘lock up’ | Daily Mail Online 'curious' daughter Olympia, revealing how proud she is that the 19­month­old 'wants to explore' now she is walking

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