An Initial Response to Review of the Transfer of the Norfolk Primary Care Trust Learning

Confidential Draft Version 5 09/03/09

Joint Strategic Needs Assessment for adults with learning disabilities in Hertfordshire

Stephen Knighton Principal Director Date: 9th March 2009 Version: 5.0

1 Confidential Draft Version 5 09/03/09 Joint Strategic Needs Assessment for adults with learning disabilities in Hertfordshire

Contents

1.0 Introduction

1.1 Purpose & scope of review 1.2 Definitions 1.3 Accessing ACS and NHS

2.0 The national picture

2.1 Policy context 2.2 Demographics 2.3 Prevalence of co-morbidities 2.4 Health inequalities 2.5 Social exclusion

3.0 The local picture – who accesses our services?

3.1 Population (including young adults in transition) 3.2 Ethnicity 3.3 District of residence 3.4 Co-morbidities / special needs 3.5 Social exclusion (housing and employment) 3.6 Carers 3.7 Banding of needs

4.0 The local picture – what services do we provide?

4.1 The care pathway 4.2 From Transition to NHS primary care 4.3 Through Fair Access to Care 4.4 Through NHS specialised services 4.5 Safeguarding vulnerable adults

5.0 The local picture – what are the costs of providing the services?

5.1 Joint Commissioning Team 5.2 NHS Continuing Care

6.0 The local picture – what does the future hold?

6.1 Population projections 6.2 Care & Health Partners Report 6.3 Main observations

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7.0 Key Recommendations

Appendix A: Bibliography

Appendix B: Acknowledgement for people consulted

Appendix C: Further comments on specialised learning disabilities services

Stephen Knighton Principal Director Date: 5th March 2009 Version: 4.3

Joint Strategic Needs Assessment for adults with learning disabilities in Hertfordshire

1.0 Introduction

1.1 Purpose & scope of review

The purpose of this review is to complete a comprehensive joint strategic needs assessment for adults with learning disabilities (ALD) and to propose a care pathway for adult specialised learning disabilities services. The requirements of the review include:

 A review of previous needs assessments (and in particular the work of Care & Health Partners in 2006)  A review of the latest national and regional guidance on both the general and specialised health needs of ALD  A review of the financing of services for ALD within Hertfordshire including the Pooled Budget, Fair Access to Care (FACS) and NHS Continuing Care (CC)  An analysis of demographic and epidemiologic data so that the needs of ALD can be banded by degree of need and by locality  A stepped care pathway identifying the types of treatment, care and support services that should be made available. Particular focus has to be given to the movement through specialised health services so that ALD can return to achievable independence as soon as possible.

The scope of the proposal is to cover adults with learning disabilities whose service needs are commissioned by the Hertfordshire Joint Commissioning Team (HJCT). The majority of ALD covered by this review will be those with moderate or severe learning disabilities who are in receipt of funding from either County Council FACS or NHS CC. However, consideration will also be given to:

 Adults with mild learning disabilities who may need FACS  ALD who have come into contact with the Criminal Justice System (CJS)  Young people with learning disabilities who are in transition to Adult Care Services

For the purposes of this review, specialised health services cover tertiary assessment & treatment (TATS), the specialist residential service (SRS), the Kestrels (a rehabilitation service), Community Support Units (CSU) and medium secure services at the Eric Shepherd Unit (ESU) and Crossways provided by the Hertfordshire Partnership Foundation Trust.

1.2 Definitions

It will be useful to try and define the term ‘learning disability’. The Diagnostic and Statistical Manual version 4 (DSM4) defines people with learning disabilities as having:

 Intellectual functioning markedly below average i.e. with an Intelligence Quotient (IQ) of 70 or less;  Difficulty in social functioning in two or more of the nine areas identified;  Started before the age of 18years.

Recognising that nobody has a precise IQ score, the Department of Health (DH) emphasised that its use alone should not be sufficient reason to decide on access to learning disabilities services. An assessment of social functioning and communication skills 4 Confidential Draft Version 5 09/03/09

should be taken into account. Therefore, in Valuing People, the DH defines learning disabilities as the presence of a significantly reduced ability to:  Understand new or complex information;  Learn new skills (impaired intelligence);  Live independently (impaired social functioning).

The disability should have started before adulthood and have a lasting effect on development. This definition does not cover adults who have acquired brain damage or those with only organic mental health problems such as dementia. This definition covers ALD with autistic spectrum disorders(ASD) but not those with only a ‘high functioning’ ASD such as Asperger’s Syndrome.

Many adults with learning disabilities have a range of developmental needs. In addition, there may be other needs because of physical disabilities and/or sensory impairments. Given this wide range of possible needs, adults can be assessed with mild, moderate, severe and profound / complex (learning) disabilities. The distinction between these assessments is the level of significant help that they need with their daily living.

1.3 Accessing Adult Care Services and NHS Continuing Care

Just meeting the clinical definition of learning disabilities is often not sufficient reason to access learning disabilities services. Most learning disabilities systems also include an evaluation of the specific social needs of people trying to access their services. This assessment of their needs is undertaken by Adult Care Services (ACS) under their FACS policy and criterion. To be eligible for a service, a person must be assessed as having critical or substantial risks to their independence. Having met the criterion, it is for ACS to determine the most appropriate means of meeting the specific social needs.

NHS CC is defined as being ‘care provided over an extended period of time to a person aged 18 years or over to meet physical or mental health needs which have arisen as the result of disability, accident or illness’. It is a term used to describe a complete package of health and social care which is arranged and funded solely by the NHS. To differentiate between the services that the NHS has to provide from the services that ACS has to provide, the DH has introduced the concept of ‘primary health need’. Put simply, where someone has a primary health need, then the NHS is regarded as being responsible for meeting all their needs.

NHS Funded Nursing Care was previously known as the Registered Nursing Care Contributions (RNCC). It is available to people who live in a registered nursing care home or independent hospital as a contribution towards the registered nursing element of their package of care.

2.0 The national picture

2.1 Policy context

2.1.1 Valuing People: A new strategy for learning disability

Published in March 2001, Valuing People sets out how the Government would enable children and adults with learning disabilities and their families to live full and independent lives as part of their local communities.

Valuing People has four key principles that lie at the heart of the Government proposals.

 Rights: People with learning disabilities have the right to a decent education, to vote, to marry and have a family, and to express their opinions. It is recognised that they may need help and support to exercise these rights.  Independence: People with learning disabilities have differing needs. In meeting these needs, public services should offer support in a way that promotes their independence.  Choice: People with learning disabilities should be able to make choices about where they live, what work they do and who should look after them. Given the right help and support, all people with learning disabilities including those with severe and profound disabilities should be able to make choices about their lives.  Inclusion: This means enabling people with learning disabilities to make use of ‘mainstream’ services and be fully active in their local community.

2.1.2 Our Health, Our Care, Our Say

Published in February 2006, this White Paper set out the Government’s ideas for the future direction of health and social care community services. The White Paper contains recommendations that are of particular relevance to ALD:

 More people should be encouraged to use ‘Direct Payments’ and ‘Individual Budgets’ to choose the services that they want;  The Health Action Plans (HAP) to include a ‘Life Check’, social care key worker and information on long term medication, how to stay healthy and how to access relevant services;  Transport arrangements to be put in place to enable people to access the services that they need;  All NHS Campuses (i.e. long term residential services where the NHS is the patient’s landlord) to close by 2010.

2.1.3 In Control

In Control is a national programme sponsored by Mencap to change the way in which social services support people with learning disabilities and their families. Through ‘Self-Directed’ Support (and Individual Budgets), the programme aims to allow people to arrange their own care and support so that they can lead a full and active life as citizens in their community.

2.1.4 Better Health, Better Metrics

Sponsored by the Foundation for People with Learning Disabilities, Better Health, Better Metrics is a project aimed at identifying outcome measures (metrics) that can be used to demonstrate improvements in the physical and mental well-being of people with learning disabilities.

2.1.5 A Life like No Other

Following its critical reports on the provision of services in Cornwall (2005) and in Sutton & Merton (2006), the Healthcare Commission undertook a national audit of learning disabilities services in 2007. The report of its findings paints a depressing picture of poor standards of care in many of the services visited.

2.1.6 Revised Mansell Report

This revised version of a report originally published in 1993 was again critical of the services provided to ALD and challenging behaviour or mental health needs. Two keys conclusions from the revised report were that:

 The capacity of local services should be developed so that they are better able to understand and respond to the needs of ALD and challenging behaviour  Local specialised services should be provided for ALD and the most challenging behaviour whilst supporting good mainstream practice.

2.1.7 Healthcare for All (Michael Report)

This report highlighted that people with learning disabilities have significantly worse health and worse experiences of healthcare systems than other people. The report found convincing evidence that people with learning disabilities have higher levels of unmet need and receive less effective treatment, despite the fact that we now have a clear legal framework requiring the delivery of equal treatment.

In launching the report, Sir Jonathan Michael emphasised his concern that people with learning disabilities were effectively invisible to the mainstream NHS. He urged each NHS body to act to ensure that ‘reasonable adjustments’ are offered throughout the services they commission or provide. The report was followed by a letter from David Nicholson, NHS Chief Executive, to all NHS Chief Executives requesting that Boards consider the Michael report and take action to implement its recommendations.

2.1.8 Valuing People Now: A New Three Year Strategy

Re-iterates and re-enforces the focus set out in the original Valuing People strategy (2001). In particular, the strategy points to making significant improvements in giving ALD much more choice and control over their lives through person centred planning, advocacy and direct payments.

The strategy is all about ALD ‘having a life’. In the light of the Michael Report, better health for ALD has become a key priority. Existing programmes such as Supporting People should be used to increase the housing options available to ALD. A cross-government employment strategy is to be published that will include a significant expansion of employment opportunities for ALD. There will be programmes to improve transport, leisure services and social activities for ALD.

2.1.9 Transforming Social Care (Putting People First)

A recent Local Authority Circular1 set out the information required to introduce ‘personalisation’ to adult care services. The personalisation approach is about giving ALD choice and control over the shape of their support in the most appropriate settings. The approach should focus on enablement and early intervention rather than reacting to a crisis under the framework of FACS.

To achieve this approach will mean working across the boundaries of social care. This will include housing, benefits, leisure, transport and health and mean working with partners from the private and voluntary sector.

2.2 Demographics

Producing precise information on the number of people with learning disabilities in the population is difficult. National research suggests that 2.6% of the school population was identified as having primary special education needs associated with learning disabilities. Of the general adult population, 1.7% will be ALD and 0.47% will be known to ACS. However, the number of people with learning disabilities in the population can be affected by the presence of old long stay hospitals and /or people being given care outside of their area of residence.

1 LAC (DH) (2008) 1 7 Confidential Draft Version 5 09/03/09

The following table shows the prevalence of PLD known to ACS (taken from the 2007/08 Self Assessment Survey):

County Nos of PLD / 000 Pop (18+ years) Hertfordshire 3.8 Bedfordshire 4.2 Essex 3.3 Norfolk 3.6 East of England 3.4

Research by the University of Lancaster points to three factors that will lead to an increase in the numbers of ALD over the next two decades:

 Increase in the proportion of younger ALD from south asian communities  Increase in survival rates of adults with severe and complex disabilities  Reduction in the mortality of older ALD.

2.3 Prevalence of co-morbidities

Unfortunately, people with learning disabilities are also at increased risk of many other physical or neurological conditions. According to the World Health Organisation:

Condition % ALD

Epilepsy 20% (50% of people with severe learning disabilities) Physical disabilities 30% Congenital heart 50% of all people with Downs problems Syndrome Incontinence 10% Hearing impairments 40% Visual impairments 40% Autistic spectrum 10% (30% of people with moderate / severe learning disabilities)

2.4 Health inequalities

Published in September 2006, the Disability Rights Commission published its report ‘Closing the Gap’ on the health inequalities experienced by people with learning disabilities. The report highlighted that ALD are much more likely than other people to have significant health risks and problems. For example, four times as many ALD die of preventable causes than people in the general population. ALD are 58 times more likely to die before the age of 50 years than the general population.

The report cited a greater incidence of cancer, coronary heart disease, respiratory disease and mental health problems.

 Women with learning disabilities are much less likely to undergo cervical smear tests and breast cancer examinations / mammography  For ALD, coronary heart disease is the second most common cause of death – and the rates are increasing due to longevity and lifestyles  Respiratory disease is the leading cause of death for ALD  The prevalence rate for schizophrenia of ALD from south asian communities are greater than those for white ALD. 8 Confidential Draft Version 5 09/03/09

For people presenting with: % ALD % General Population Incidence of gastro-oesophageal 48% 25% disorders Death from respiratory disease 46% 15% Schizophrenia 3% 1% Dementia 20% 6%

The Valuing People Support Team has pointed out that ALD have other inequalities associated with their diet and lifestyle.

 ALD are much more likely to be either underweight or obese when compared to the general population  Less than 10% of ALD eat a balanced diet with a sufficient intake of fruit and vegetables  Over 80% of ALD do not participate in levels of activity that are above the minimum recommended by the DH  Just under one in five of the general population of ALD (i.e. not necessarily known to HCC) smoke cigarettes – with rates of smoking higher with adults living in private households.

2.5 Social Exclusion

2.5.1 Accommodation

The majority of adults with mild / moderate learning disabilities live with a parent or other relative. Adults with more severe learning disabilities are more likely to be in supported living or residential care homes.

ALD living in private households are much more likely to live in areas characterised by high levels of social deprivation. ALD living in private households are more likely to experience material and social hardship than ALD living in supported living.

2.5.2 Employment

Over four out of five ALD are likely to be unemployed. The chances of paid employment are much greater for adults with mild / moderate learning disabilities (28%) than for adults with severe learning disabilities (10%) or profound learning disabilities (0%).

Just over one in three ALD are undertaking some form of education or training. Again, this was markedly higher for adults with mild / moderate learning disabilities (38%) than for adults with profound learning disabilities (14%).

3.0 The local picture – who accesses our services?

3.1 Population (including young adults in transition)

In order to prepare the data for this section of the report, a number of databases have been used. It has not always been possible to correlate across the different databases. The database sources used are:

 Connexions (Hertfordshire Careers Services)  IRIS (Hertfordshire Adult Care Services)  Transitions (Hertfordshire Adult Care Services)  Placements (Hertfordshire Adult Care Services)  Balanced scorecard (Hertfordshire Adult Care Services)  Primary health care (Hertfordshire Primary Care Trusts)  Continuing Care (Hertfordshire Primary Care Trusts)  Specialised health services (Hertfordshire Partnership Foundation Trust)  Safeguarding of Vulnerable Adults (Hertfordshire Adult Care Services)

3.1.1 Young people in transition

According to the Children in Transition register there are 517 young people placed in special residential schools or colleges.

Academic Year Total Severe (Connexions) LD Year 6 16 1 Year 7 75 30 Year 8 78 21 Year 9 79 25 Year 10 72 30 Year 11 78 22 Year 12 60 24 Year 13 48 21 Year 14 (Age 19) 7 Unrecorded 4 1 Total 517 175

3.1.2 Adults

It has not been possible to identify the total numbers of ALD in Hertfordshire as many do not access statutory services. Applying the national prevalence rate (2.4%) would imply that there are about 19,500 ALD in the county.

There are 2,930 ALD known to the County Council (0.36% of total adult population). This means that they would have been eligible for services under the Fair Access to Care criteria.

Age Range Female Male Total % ALD % Total (IRIS) Population <20 years 46 81 127 4.3% 7.8% 21 – 25 years 123 154 277 26 – 30 years 96 167 263 31 – 35 years 96 157 253 62.2% 52.0%

36 – 40 years 160 174 334 41 – 45 years 155 205 360 46 – 50 years 151 186 337 51 – 55 years 117 153 270 56 – 60 years 118 140 258 24.0% 21.4% 61 – 65 years 67 108 175 66 – 70 years 51 64 115 71 – 75 years 30 44 74 8.4% 13.4% 76 – 80 years 31 24 55 >81 years 17 15 32 1.1% 5.4% Total 1,258 1,672 2,930 % Split 42.9% 57.1%

3.2 Ethnicity

Predominantly, ALD have classified themselves as White British.

Ethnicity (IRIS) Female Male Total % Split

White British 1,152 1,517 2,669 91.1% White Irish 21 29 50 1.7% White Other 40 38 78 2.7% Black 12 17 29 1.0% Asian 17 41 58 2.0% Mixed 4 5 9 0.3% Mixed African 3 7 10 0.3% Mixed Asian 3 2 5 0.2% Other 6 16 22 0.8% Total 1,258 1,672 2,930

In the county as a whole, 5.4% of the adult population are from black and minority ethnic communities. This compares to 4.6% of the total ALD population known to the Council.

3.3 District of residence

For young people, 61 attend special residential schools or colleges which are out of county.

For adults with learning disabilities, they have been shown under their respective Borough or District Council. However, it must be noted that several adults have their care provided out of county.

District (IRIS) Community Residential Total % ALD % ALD In Based Care County Broxbourne 136 35 171 5.8% 7.1% Dacorum 224 53 277 9.5% 11.4% Hertsmere 195 70 265 9.0% 10.9% East Herts 183 72 255 8.7% 10.5% North Herts 181 68 249 8.5% 10.3% St Albans 199 135 334 11.4% 13.8% Stevenage 155 24 179 6.1% 7.4% Three Rivers 95 54 149 5.1% 6.1% Watford 195 82 277 9.4% 11.4% Welwyn Hatfield 211 56 267 9.1% 11.0% Out of County 171 336 507 17.4% - Total 1,945 985 2,930

% Split 66.4% 33.6%

3.4 Co-morbidities / special needs

3.4.1 Young people (Years 6 to 14)

The primary needs of young people in special residential schools and colleges are around their learning disabilities. Many of the young people also have secondary needs.

Primary Need (Connexions) Numbers % Recorded Needs Severe learning disabilities 175 43.1% Moderate learning disabilities 76 18.7% Autistic spectrum (inc Asperger’s) 71 17.5% Physical disabilities 57 14.0% Sensory impairments 15 3.7% Others 12 2.9% Unrecorded 111 Total 517

3.4.2 Adults

An attempt has been made to identify where there are co-morbidities (secondary conditions).

Co-morbidity (IRIS) Community Residential Total % Recorded Based Care Co-morbidities Epilepsy 3 1 4 0.1% Autistic spectrum 17 7 24 0.8% Mental health 3 4 7 0.2% Physical disabilities 249 83 332 11.3% Hearing impairment 79 30 109 3.7% Visual impairment 103 47 150 5.1% Substance misuse 0 0 0 Total incidences 454 172 626 21.4% Physical disability 28 7 35 and hearing impairment Physical disability 39 15 54 and visual impairment Total Adults 390 147 537 % Total placements 31.0% 8.8% 18.3%

It has not been possible to accurately identify the numbers of people with Down’s Syndrome.

The small numbers in the above table for some co-morbidities would imply that the recording on IRIS is incomplete. Applying the national prevalence rates to the numbers of people identified as having severe learning disabilities would suggest 87 ALD with epilepsy and 52 ALD with autistic disorders. The ‘balanced scorecard’ for the community learning disabilities teams shows 127 people on the Care Programme Approach (CPA).

3.5 Carers

During 2007/08, there were 563 recorded carer support packages from both in-house and private & voluntary services. 12 Confidential Draft Version 5 09/03/09

District (IRIS) Carer Packages In-house services 60 Passport to Leisure 100 Leisure Direct 84 Regional Mencap - St Albans 64 Regional Mencap - Stevenage 25 Regional Mencap – North Herts 16 Mencap – St Albans 73 Mencap - Watford 67 Guideposts 52 Others 22 Total 563

Regrettably, it is not possible to obtain a detailed analysis of the private & voluntary database as only average attendances are recorded.

For the in-house services, it has been possible to extract the following analysis:

Age Range (IRIS) Client Carer Female Male Carer Carer <20 years 2 21 – 25 years 1 26 – 30 years 2 31 – 35 years 2 36 – 40 years 2 41 – 45 years 4 46 – 50 years 4 3 1 2 51 – 55 years 2 1 1 56 – 60 years 3 3 61 – 65 years 1 1 1 66 – 70 years 1 1 1 71 – 75 years 3 2 1 76 – 80 years 3 1 2 >81 years 6 4 2 Unrecorded carer age 39 Total 60

3.6 Banding of Needs

During 2007/08, there were 112 approved placements. The following table analyses the placements by level (or band) of support. Band of Need (Placements) Known Client New Client Total

Low 2 3 5 Low to Moderate 5 10 15 Moderate 19 15 34 Moderate to High 13 13 26 High 9 4 13 High to Very High 4 3 7 Very High 1 0 1 Exceptional 1 1 2 Unspecified Total 61 51 112 13 Confidential Draft Version 5 09/03/09

It is interesting to note that the majority of placements were for ALD having low / low to moderate needs (43.8%) with the ALD having moderate to high / high needs the second most frequent (34.8%).

The following table summarises the main categories of the client at the time of placement (most will have at least two categories of need):

New Client Category Known New Total (Placements) With Family Carer 4 21 25 (Where carer > 65years) 3 9 12 In transition 2 13 15 In hospital 12 4 16 With mental health problem 9 5 14 With ASD (inc Asperger) 9 3 12 Dementia 1 2 3 Down’s Syndrome 2 4 6 Forensic needs 4 4 8

The table implies that increasingly placements will need to be found where:

 There is a family care break down  Young people are moving through transition  There are other co-morbidities.

4.0 The local picture – what services do we provide?

4.1 The care pathway

Because of the complexity of the care pathway, it has been divided into three sections.

 From transition into NHS primary care / Employment  Through Fair Access to Care  Through NHS specialised services

4.2 From transition into NHS primary care / Employment

4.2.1 Hertfordshire Careers Service

The Careers Service (Connexions) has the statutory responsibility to undertake a transition assessment report during the first term of Year 9 (age 14 years). Each young person will be allocated a Personal Advisor to liaise with them and their parents / carers.

An annual planning meeting is undertaken in each of the following years up to Year 14 (age 19 years). The outcomes of the meetings are collated into planning matrices and circulated to CSF, ACS and NHS colleagues. The matrix currently shows (but not restricted to):

 Name of young person  Date of leaving school / college  Current school / college  District of origin  Aspirations e.g. supported employment, supported living,  Disability (based on Disability Discrimination Act definitions)  Post school options  Support needs  Housing needs  Therapy needs

Reference is also made to any other relevant data e.g. medication, social activities etc.

4.2.3 Hertfordshire Transition Team

This newly formed Transition Team is responsible for co-ordinating the movement of young people into adult care services. It will be operational from April 2009.

4.2.4 Community Learning Disabilities Services

The four (previously seven) integrated (i.e. health and social care) community learning disabilities teams in Hertfordshire are targeted at ALD who have a range of complex needs. For example, they would have physical disabilities, mental health problems, behaviour disorders or neurological problems / epilepsy. The focus of the teams should be to:

 Assess the needs of adults with learning disabilities and their carers as part of the FACS process  Undertake reviews of care under e.g. Single Assessment Process (SAP), Care Programme Approach (CPA), Safeguarding Vulnerable Adults (SoVA)  Educate and make providers aware of the needs of adults with learning disabilities (e.g. in the management of challenging behaviour)  Negotiate placement and co-ordinate the care of adults with learning disabilities e.g. in out of county placements, through specialised health services 15 Confidential Draft Version 5 09/03/09

2007/08 Data (Balanced Score Card) Numbers % ALD / Carers User Assessments 672 22.9% Carer Assessments 204 36.2% Caseload 2,779 94.8% Total actions 2,859 97.6% Out of county actions 470 92.7% Black & minority ethnic actions 160 120.3% Reviews 2,061

4.2.5 Acute & Primary Liaison Health Facilitation Team

Recently established in October 2007, the Facilitation Team has three main functions. These are:

 To ensure that ALD receive the necessary hospital care and that the care is a positive experience  To enable health staff be aware of the additional needs of ALD – and so make ‘reasonable adjustments’  To advise NHS organisations when drafting policies and procedures so that they reflect the needs of ALD.

Since its establishment, the Facilitation Team has seen 217 adults with learning disabilities, the majority being aged 41 years or older.

Analysis (HPFT) Numbers Female 91 Male 126 Total 217

Emergency admissions 93 Preparing for admission 36 Advice & liaison 72 Outpatient appointment 12 General concerns 4 Total 217

4.2.6 NHS Primary Care

The first health point of contact for most ALD will be their family doctor. Under the Quality Outcomes Framework, family doctors are required to compile a register of ALD – to enable them to ensure that annual health checks and Health Action Plans are completed.

2007/08 Data (HPCT) Numbers Total %

Practices with LD registers 127 97.7% Adults on LD registers 2,381 81.3%

The recent introduction of a Directed Enhanced Service (DES) will encourage family doctors to fully maintain their ALD registers and complete the annual health checks. This will be monitored by the Eastern Strategic Health Authority through its Learning Disabilities Performance Self-Assessment process.

4.2.7 Work Solutions

Work Solutions is the successor organisation to Employment Direct. The objectives of the organisation include enabling ALD both to enter and to keep in employment by offering supported employment opportunities:

 Work experience / trials (of up to 8 weeks)  Employment training  Employment / benefits / vocational advice

The Work Solution approach is to give ALD a work skills programme that is self-directed around their skills, experiences and aspirations. Because of the need for good communications between the organisation and ALD (including adults with Asperger’s Syndrome), Work Solutions offers one to one support.

The main employment partners for Work Solutions are both statutory and voluntary (not for profit) organisations:

 Job Centre Plus (disability employment advisors)  Shaw Trust (Pathways to Work)  SeeTec (Pathways to Work)  Connexions (youth employment advisors)

The following tables are taken from an extract of the 2007/08 annual report showing the numbers of adults with learning disabilities supported by Work Solutions:

Age (Work Solutions) Female Male Total

<20 years 4 10 14 21 - 25 years 10 20 30 26 – 30 years 2 9 11 31 – 35 years 3 7 10 36 – 40 years 2 4 6 41 – 45 years 1 4 5 46 – 50 years 2 1 3 51 – 55 years 3 3 Total 24 60 84

Type of Employment Female Male Total Full time 3 17 20 Part time 5 13 18 Permitted earnings 2 1 3 Work taster 14 29 43 Total 24 60 84

4.2.8 Job Centre Plus

From August 2008, all people claiming incapacity benefit enter the Pathways to Work programme. Following an initial assessment of job possibilities, people will be referred to the Shaw Trust or SeeTec for more detailed work focus interviews.

For ALD actively seeking work, they will be referred to the Disability Employment Advisor (DEA) for help in securing employment. The DEA will undertake an initial assessment that usually covers:

 Educational background  Any work experience  Any paid or voluntary work  Hobbies  Other interested parties (e.g. family carers)  How barriers to employment (e.g. disabilities, capabilities, functioning) affect them on a day to day basis. The DEA have access to work psychologists to assist them in making the initial assessment.

The DEA has access to the North Hertfordshire College for supporting ALD with their work preparation (e.g. their appearance, using public transport, preparing a CV, completing application forms, undertaking mock interviews etc).

A work trial is for a period of between 15 and 30 days in a job that has been formally advertised and meets certain specifications (e.g. minimum wage). Ideally, the DEA would contact an employer that has the disability ‘2 Ticks’ award.

Both Work Solutions and Job Centre Plus acknowledge that changes in Government direction has meant that supporting ALD back into employment is not as urgent as it was previously. The new County employment strategy for ALD2 has recommended the appointment of a Service Development Manager to co-ordinate activities across the different agencies. The aim is to increase the numbers of ALD in public sector employment and to stimulate the creation of social enterprises.

2 September 2008 18 Confidential Draft Version 5 09/03/09

4.2 From transition to NHS primary care / Employment NHS Primary Care (Family Doctors etc) Acute & Primary Liaison Health Facilitation Team General Hospitals

Young People Connexions Transition Team CLDT Se Assessment e 4.3

Work Solutions

Job Centre Plus

For continuation of care pathway see the schematic at end of section 4.3

4.3 Through Fair Access to Care

4.3.1 Supporting People

The Supporting People programme aims to give ALD advice and assistance with their individual tenancy or group home responsibilities. It is not about providing housing. The service is included in service agreements with housing or supported living providers.

Access to Supporting People is through the FACS business process. To be eligible, ALD must live in Hertfordshire as the service is linked to local housing benefits. It is accepted that there is less emphasis on providing this service to ALD and this has been reflected in shifting the budget towards other priority groups.

4.3.2 Direct Payments

Direct Payments are intended to create greater flexibility in the use of social care budgets. They will give ALD greater control to determine the nature and provision of their social care. Direct payments are means-tested cash sums made to ALD (or their carers) who have met the FACS criteria.

Age (IRIS) Female Male Total <20 years 6 15 21 21 - 25 years 13 11 24 26 – 30 years 5 12 17 31 – 35 years 5 8 13 36 – 40 years 7 6 13 41 – 45 years 8 5 13 46 – 50 years 3 4 7 51 – 55 years 3 2 5 56 – 60 years 1 4 5 >60 years 0 7 7 Total 51 74 125 % ALD known 4.1% 4.4% 4.3%

4.3.3 Supported Living

Supported living schemes are provided or funded by the County Council. The schemes should:

 Provide housing and support for ALD  Help people to manage their own tenancies  Be owned by housing associations or private landlords  Have support services provided by the non-statutory sector or social services.

The following table is an extract from the Placements database and shows the recorded types of Supported Living provided both in and out of county.

Type of Supported Living In County Out of County Total (Placements) Unspecified 1 11 12 Not 24 hours 128 3 131 On call 24 hours 197 15 212 Staffed 24 hours 427 10 437 Shared Ownership 1 0 1 Total 754 39 793

Funded by: ACS Block 23 0 23 ACS Spot 96 39 135 Sec 28A 56 0 56 Housing Benefit 208 0 208 In House 365 0 365 Direct Payments 6 0 6 Total 754 39 793

The following table gives the breakdown of supported living by district: District (Placements) Supported % ALD Living Broxbourne 50 6.6% Dacorum 106 14.1% Hertsmere 81 10.7% East Herts 72 9.5% North Herts 60 8.0% St Albans 89 11.8% Stevenage 60 8.0% Three Rivers 22 2.9% Watford 104 13.8% Welwyn Hatfield 110 14.6% Total 754

4.3.4 Home Care

Home care provides a range of personal and social care to ALD e.g. help with washing, dressing, preparing food shopping and cleaning. The aim of the care is threefold:

 To enable ALD to remain independent and live at home;  To prevent ALD having to go into long-term care;  To provide some respite to family carers.

Home care is provided or funded by the County Council in conjunction with family carers for a specified period of time per day depending on need.

4.3.5 Day Opportunities

Day opportunities aim to help ALD to develop skills and interests to enable them to live as independently as possible within their local community. They offer a range of leisure, education and work related activities for a set period of time during the day. Th work related activities may lead to voluntary or paid work opportunities. Most of these services are provided by the County Council (c75%) or commissioned by them within the private & voluntary sectors (c25%).

District (IRIS) Only Home Only Day Both Home % ALD Day Care Opportunities & Day Opps Broxbourne 11 64 51 7.2% Dacorum 28 123 52 11.6% Hertsmere 22 92 76 10.8% East Herts 11 100 48 9.1% North Herts 10 95 67 9.8% St Albans 33 91 40 9.3% Stevenage 21 54 68 8.1% Three Rivers 13 51 28 5.2%

Watford 17 116 38 9.7% Welwyn Hatfield 31 126 40 11.2% Out of County 10 120 9 7.9% Total 207 1,032 517

The Day Services Modernisation (Fulfilling Lives) Project is aiming to make significant changes in the way that the services are delivered. Rather than using ‘traditional’ day centres, the project is moving to a ‘hub and spoke’ model that will deliver a more person- centred range of services. The hub will cater for people with more profound disabilities (e.g. those needing wheelchairs, help with changing, over the age of 50 years). The spokes will deliver community-based services with greater partnership with mainstream community organisations, private and voluntary providers.

For phases one and two of the modernisation programme, the following table shows the numbers of clients using the services by Day Opportunities band of need.

Band of Need Numbers % Numbers Potentially independent 196 21.8% Mainstream services 249 27.6% Special care 255 28.3% Special needs 201 22.3% TOTAL 901

It has been possible to collect some provisional data on the numbers of ALD who are over 50 years or use wheelchairs or have dementia.

Band of Need % Attendees Over 50 years 23.1% Use wheelchairs 10.9% With dementia 4.1%

4.3.6 Residential Homes

Residential homes are funded by the County Council to provide both housing and support for ALD. In addition, there is nursing or independent hospital care that is part or fully funded by the NHS.

The following table is an extract from the Placements database and shows the recorded types of residential homes provided both in and out of county.

Type of Residential Care In County Out of County Total (Placements) Adult Placement 14 9 23 Independent Hospital 0 31 31 Independent Tenancy 26 0 26 Nursing Home 44 22 66 Residential Home 620 296 916 Total 704 358 1,062 Funded by: ACS Block 5 0 5 ACS Spot 361 295 656 Sec 28A Block 313 1 314 Housing Benefit 22 0 22 In House 2 0 2 Others / Unspecified 1 62 63 Total 704 358 1,062 22 Confidential Draft Version 5 09/03/09

The following table gives the breakdown of residential homes by district:

District (Placements) Residential % Total S28A Homes Homes Broxbourne 27 4.4% 7 Dacorum 60 9.7% 42 Hertsmere 70 11.3% 19 East Herts 78 12.6% 49 North Herts 58 9.4% 27 St Albans 105 16.9% 58 Stevenage 12 1.9% 6 Three Rivers 58 9.4% 47 Watford 77 12.4% 38 Welwyn Hatfield 59 9.5% 20 Unclear 16 2.5% Total 620 313

Two points stand out from the tables. Firstly, there is a significant number of out of county placements (33.7% of the total). Secondly, the total numbers of residential homes funded by Section 28A BLOCK purchases (50.4% of all residential homes). These homes came about following the closure of the old long stay institutions (e.g. Leavesden, Cell Barnes, Harperbury).

4.3.7 Social crisis housing

Social crisis housing is emergency accommodation and support for ALD where:

 Their coping ability is temporarily impaired  There is imminent breakdown of the family care arrangements

The objective of social crisis housing is to support ALD through a short term crisis without the need for admission to an inpatient facility. There was no evidence that such housing is made specifically available within the County, although ALD in crisis have access to emergency respite places and voids / vacancies in contracted placements.

4.3.8 Residential and other respite

Residential respite is the planned admission of ALD for a specified period of time so that carers can have a right to a life outside of caring. Other respite services are provided during the day for specified periods of time.

The following analysis is for in-house services ONLY.

2007/08 Data (Balanced Scorecard) Numbers % ALD ALD who used respite services 2,013 68.7% Bed nights used (including additional 7,082 and emergency nights) Visits less than 4 hours 298 Visits over 4 hours 89 Visits for whole day 440

Emergency respite is possible on a short term basis where there is a social crisis (e.g. breakdown in family care, alleged abuse).

4.3.9 Transport

Transport is mainly provided for people to attend day opportunities or respite services. Such services are provided by either the County Council, contractors or taxis. The type of transport provided is changing with a greater need for wheel chair accessible vehicles.

The following table shows the use of transport by ALD:

2007/08 Data (Transport) Numbers To in-house day opportunities 723 To private & voluntary day 21 opportunities To College 20 To respite (taxi only) 21 Total 785 % ALD known to Council 26.8%

4.3.10 Intensive Support Team

Recently established, the intensive support team (IST) is targeted at ALD who are in crisis and should:

 Enable them to either remain in their own homes or residential care;  Gate-keep/ triage entry into inpatient assessment & treatment.

The intensive community services should work closely with the community learning disabilities services to prevent ALD who display challenging behaviours or severe mental health from being admitted to the inpatient facilities.

2007/08 Data (HPFT) Numbers New referrals 118 Discharges 133 Caseload @ 31/03/08 102

4.3.11 NHS Continuing Care / Funded Nursing Care

NHS Continuing Healthcare is defined as being ‘care provided over an extended period of time to a person aged 18 years or over to meet physical or mental health needs which have arisen as the result of disability, accident or illness’. It is a term used to describe a complete package of health and social care which is arranged and funded solely by the NHS. To differentiate between the services that the NHS has to fully fund from the services that the County Council has to fund, there is the concept of ‘primary health need’. Put simply, where someone has a primary health need, then the NHS is regarded as being responsible for meeting all their needs.

NHS Funded Nursing Care was previously known as the Registered Nursing Care Contributions (RNCC). It is available to people who live in a registered nursing care home as a contribution towards the registered nursing element of their package of care.

Both the NHS and the County Council have a responsibility to ensure that the assessment of eligibility for and provision of continuing care takes place in a timely and consistent way. This means that although a person does NOT qualify for NHS Continuing Healthcare, the NHS may still have a responsibility to part fund care under a ‘shared package’ of care. In such

cases, it is presumed that the NHS contribution will directly relate to the health care element of the package of care.

There are currently 120 adults with learning disabilities recorded as being in receipt of NHS Continuing Care or Nursing Funded Care.

Age Range (HPCT) Female Male Total

<20 years 3 5 8 21 – 25 years 12 10 22 26 – 30 years 7 13 20 31 – 35 years 2 8 10 36 – 40 years 8 12 20 41 – 45 years 5 6 11 46 – 50 years 4 3 7 51 – 55 years 6 6 56 – 60 years 3 6 9 61 – 65 years 2 2 66 – 70 years 1 1 2 71 – 75 years 1 2 3 Total 46 74 120

Part Funded / 11 50 61 Unknown Fully funded 35 24 59 Total 46 74 120

In county 12 23 35 Out of county / 34 51 85 unknown Total 46 74 120

A joint care needs assessment of the caseload is currently being undertaken by representatives of the PCT and ACS. Some 27 clients have been identified as being detained under a section of the Mental Health Act. It is likely that these clients will become the commissioning responsibility of the East of England Specialised Commissioning Group in April 2009.

Based on a survey undertaken in 2006, the NHS funds 24 adults with a primary condition of epilepsy at the St Elizabeth’s.

2006 Review (HPCT) Numbers Total reviewed 24 Reviewed as ALD 4 Median Age 46 Mean LoS (yrs) 23.1 Current caseload 2008/09 40

The mean length of stay is taken from the original admission date to the Hospital.

25 Confidential Draft Version 5 09/03/09 4.3 Through Fair Access to Care

Intensive Community Se Support e 4.4 In-house Supported Living Social Crisis Housing

In-house Respite Registered Nursing Home / Independent NHS Continuing Care / Hospital Placement Funded Nursing Care In-house Day Opportunities

From CLDT Assessment Fair Access to Care Individualised Budget / Residential Placements 4.2 Criteria Direct Services

P& V Supported Living

Transport

P & V Respite

Supporting People / Tenancy Assistance P & V Day Opportunities

Safeguarding Vulnerable Adults

4.4 Through NHS Specialised Services

4.4.1 Community Forensic Service

The community forensic service aims to assist with the management of adults with mental health problems which contribute to serious offending or other challenging behaviour. In particular, where there would be actual or threatened harm to other people or property.

2007/08 Data (HPFT) Numbers New referrals 34 Discharges 50 Caseload @ 31/03/08 79

With DH funding, the HJCT is working with the charity Revolving Doors to establish a pilot scheme in Watford that looks at the best way to access court diversion schemes.

4.4.2 Community Support Units

This service is for the acute assessment & treatment of ALD whose levels of vulnerability, behaviour and/or learning disabilities present risks to themselves or others. The service is provided on two main sites in Hoddesdon (10 beds) and in Watford (10 beds). Hertfordshire currently contracts for 19 placements.

The service is for ALD of 18years and above who are resident in Hertfordshire and have a learning disability and:

 Have mental health needs (including behaviour that challenges) which require inpatient treatment  Where the mental health need is over and above that which can be met by community services.  Where the service users needs cannot be met by mainstream provision.

Whilst such facilities are only intended for short term assessment & treatment, their beds often become blocked with delayed transfers of care. The delay is likely to arise because of the time taken to plan for discharge and make the necessary arrangements.

2007/08 Data (HPFT) Female Male Total Discharged < 31/03/08 10 12 22 Median Age 45 52 Mean LoS (wks) 24 23

Discharged < 30/09/08 3 4 7 Median Age 47 48 Mean LoS (wks) 161 126

Remaining @ 30/09/08 6 3 9 Median Age 41 34 Mean LoS (wks) 68 73

For the majority of the people moving through or remaining in the service, there diagnosis is one of mild / moderate learning disabilities with a range of mental health problems.

In addition, there is a small assessment & treatment service provided by Enfield Primary Care Trust for ALD living in the Cheshunt and Waltham Cross area. Although the service can provide the equivalent of 0.5 inpatient beds, its focus is changing to having more intensive community support.

4.4.3 Tertiary Assessment & Treatment

This service aims to assess and treat people with a learning disability who have additional mental health and sensory problems, including challenging behaviour, and are presenting with needs over and above that which can be met by the local Community Learning Disability Teams or Support Units.

The service is provided on the Harperbury site and consists of 4 purpose built bungalows (of 8 beds each) and a house (of 5 beds) for people requiring intensive pre-discharge support. Hertfordshire currently contracts for 16 placements.

Although purportedly an assessment & treatment facility, the lengths of stay and the ‘locked’ nature of the service give it the feeling of being a low secure facility.

2007/08 Data (HPFT) Female Male Total Discharged < 31/03/08 2 3 5 Median Age 31 32 Mean LoS (yrs) 2.2 2.9

Remaining @ 30/09/08 4 8 12 Median Age 36 32 Mean LoS (yrs) 5.9 4.5

For the majority of the people moving through or remaining in the service, their diagnosis is one of mild / moderate learning disabilities and where they have a personality disorder or an ASD.

4.4.4 Specialised Residential Services

These residential homes were set up as part of the closure of the old long stay institutions (e.g. Harperbury, Cell Barnes). The service consists of 7 purpose built bungalows on the Harperbury site providing single sex accommodation for 33 service users, who have a range of moderate to severe learning disabilities with associated complex needs such has autistic spectrum disorders, sensory impairments, and challenging behaviours. Hertfordshire currently contracts for 13 placements.

2007/08 Data (HPFT) Female Male Total Remaining @ 30/09/08 3 10 13 Median Age 59 53 Mean LoS (yrs) 37.6 18.7

The mean length of stay is taken from the original admission date to the Harperbury site.

2007/08 Data (HPFT) Numbers On Section (Treatment) 8 Requiring sensory adaptations 6 Requiring wheelchair 2 adaptations

In accordance with the Government White Paper ‘Our Health, Our Care, Our Say’ and community care legislation, work is underway to assess the needs of ALD who meet the DH definition of living in the NHS and for whom the NHS is landlord. This work includes a full Section 47 community care assessment and person centred plan for all ALD for whom the Council is responsible.

2007/08 Data (HPFT) Numbers Moved by March 2009 2 Moved by March 2010 9 Awaiting discharge date 2 Total 13

4.4.5 Continuing rehabilitation

It is recognised that some ALD will require longer rehabilitative care services. This service is provided in two bungalows (10 beds) in the Kestrels facility for people with mild to moderate learning disabilities and additional mental health problems such as personality disorders. Hertfordshire currently contracts for 8 placements.

Whilst the facilities are only intended for rehabilitation up to 6 months, there appears to be a reluctance to plan for discharge and make the necessary arrangements.

2007/08 Data (HPFT) Female Male Total Discharges < 31/03/08 1 1 2 Median Age 44 41 Mean LoS (yrs) 5.2 10.3

Remaining @ 30/09/08 3 3 6 Median Age 43 44 Mean LoS (yrs) 2.3 4.3

4.4.6 Secure Services

Regrettably, some ALD will come into contact with the criminal justice or court diversion systems. Because of their offence (e.g. arson or paedophilia), they will need to be detained in NHS or independent sector forensic / secure facilities. Excluding the high-secure Special Hospitals, local forensic / secure facilities are usually of two types:

4.4.6.1 Medium secure facilities

Medium secure facilities have certain specifications for physical security to provide care for people who are detained under the Mental Health Act 1983. The service is provided in the Eric Shepherd Unit (36 beds) for males only. Hertfordshire currently contracts for 8 placements under arrangements with the East of England Specialised Commissioning Group..

Because of the serious nature of some of the index offences, the service aims to provide a range of treatment programmes, usually lasting up to two years:

 Sexual offender treatment  Fire setting treatment  Anger management therapy  Personality disorder therapy  Substance misuse therapy

2007/08 Data (HPFT) Males Remaining @ 30/09/08 8 Median Age 27 Mean LoS (yrs) 2.6

None of the remaining patients were recorded as being ready for discharge.

4.4.6.2 Low secure rehabilitation

Low secure rehabilitation services are for people detained under the Mental Health Act 1983 and need longer support before being discharged to a location in the community. Although not strictly meeting DH physical standards for secure premises, this service is provided in The Crossways facility (6 beds). Hertfordshire currently contracts for 2 placements.

2007/08 Data (HPFT) Male Discharges <31/03/08 1 Median Age 24 Mean LoS (yrs) 2.2

Remaining @ 30/09/08 2 Median Age 48 Mean LoS (yrs) 15.6

The mean for the remaining patients is skewed as one patient has been in the facility for a considerable number of years.

4.4.7 Epilepsy Services

Currently, there are epilepsy advisory nurses but they only cover the west of the County. Medical assessments are conducted by the outreach service from The Royal Free Hospital at Watford General Hospital.

4.4 Through Specialised Health Services

Independent Specialised Provider

Community Forensic Team

Community Support Inpatient Unit (Ware Road) (Stratford Road) Intensive Community CLDT Support Fro Co-ordination Tertiary m Assessment & Treatment 4.3 / Liaison Services (Harperbury)

Medium Secure (Eric Shepherd Unit)

Low Secure Continuing Rehabilitation Rehabilitation (Kestrels) (Crossways)

4.5 Safeguarding vulnerable adults

The responsibility for ensuring that effective arrangements are in place for safeguarding vulnerable adults (SOVA) rests with the County Council. The SOVA process is detailed in its Safeguarding Adults from Abuse policies and procedures manual and summary notice.

Each year, an annual report is produced showing the numbers, types of abuse, and outcomes of the investigations (across all care groups). For the last fiscal year, there were 172 investigations on adults with learning disabilities.

Gender (SoVA) Numbers Female 92 Male 80 Total 172

Type of Abuse Numbers (Where recorded) Physical 36 Sexual 15 Psychological 12 Neglect / Omission 10 Others 10 Total 83

Location of Abuse Numbers (Where recorded) Residential care 25 Own home 20 Supported living 14 Day centre 4 Others 20 Total 83

In addition to the SOVA investigations, the database records the numbers and types of Serious Concerns. A serious concern is usually initiated where there is evidence / examples of poor quality services being delivered by a care provider.

There are implications for training the staff in residential care and supported living facilities in the management of ALD to prevent any abuse.

5.0 The local picture – what are the costs of providing the services?

5.1 Joint Commissioning Team

Services for ALD incur the greatest expenditure of the care groups covered by the Hertfordshire Joint Commissioning Team. Expenditure on services for ALD continues to grow year on year as shown by the following table.

Budget Summaries (£000) 2007/08 2008/09 % Growth Budget Budget Contributions: Hertfordshire County Council 69,806 77,943 11.7 LD Development Fund 0 626 Hertfordshire Primary Care Trusts:  Services 19,240 19,903 3.4  LD Development Fund 837 0  Section 28A transfers 28,100 29,022 3.3 Total Contributions 117,983 127,494 8.1

Expenditure: Hertfordshire County Council  Residential Care 52,874 56,634 7.1  Day / Community Care 12,171 11,333 (6.8)  Care Management 4,711 4,921 (25.3)  Direct Payments / Budgets 0 1,333  Others & Resettlement 30,658 35,770 16.7 Hertfordshire Partnership Trust  Community Inpatients 4,494 4,220 (6.1)  Medical Support 1,319 1,281 (2.8)  Therapy Support 3,322 3,980 19.8  Individual Placements 224 264 17.8  Specialised Services 7,112 7,275 2.3  Other 50 0 Other NHS / Independent Providers 958 376 (60.7) Growth 0 330 Grants to Voluntary Groups 90 106 17.8 Total Expenditure 117,983 127,494 8.1

5.2 NHS Continuing Care / Specialised Services

HPCT has responsibility for the funding care for ALD in three areas.

 Where there is a primary health need for the accommodation and support (see section 4.3.10)  Where there is a need for low or medium secure facilities (see section 4.4.6)  Where ALD has been discharged after being detained under the Mental Health Act and has been assessed as needing health care as part of Section 117 After-Care support.

Budget Summaries (£000) 2007/08 2008/09 % Growth Outturn Outturn Continuing Care / Specialised Services 8,814 10,736 21.8 St Elizabeth’s 454 464 2.3 Total Expenditure 9,268 11,200 20.8

Grand Total 127,251 138,694 9.0

The East of England Specialised (Mental Health) Commissioning Group is responsible for the procurement of medium secure services for ALD. From April 2009, they will also assume responsibility for the procurement of low secure services for ALD.

34 6.0 The local picture – what does the future hold?

6.1 Population predictions

The basis for the predictions is the 2006 mid-year estimates taken from the Office for National Statistics (ONS). The predictions are taken from the Projecting Adult Needs and Services Information System (PANSI) and Projecting Older People Population System (POPPI) of the Department of Health. The prevalence rates are based on those set out in a report published by Eric Emerson and Chris Hatton of the Institute for Health Research at Lancaster University. Some of the prevalence rates have been adjusted to reflect the situation in Hertfordshire.

Total Adult Population 2008 2010 2015 2020

Aged 18 – 24 85,700 88,900 88,200 83,300 Aged 25 – 34 138,800 142,200 155,700 162,000 Aged 35 – 44 171,000 166,000 155,600 158,900 Aged 45 – 54 149,000 155,800 165,000 159,000 Aged 55 – 64 120,700 121,600 122,400 137,700 Aged 65 – 69 42,700 45,500 55,800 51,200 Aged 70 -74 39,400 39,200 41,800 51,600 Aged 75 – 79 34,000 34,300 35,200 37,800 Aged 80 + 48,400 50,700 57,200 64,400 Total 829,700 844,200 876,900 905,900 % Increase 1.75% 3.87% 3.31%

The following table shows the total numbers of ALD and includes mild, moderate, severe and complex / profound disabilities:

Adults with LD 2008 2010 2015 2020

Aged 18 – 24 2,330 2,414 2,385 2,249 Aged 25 – 34 3,456 3,541 3,877 4,031 Aged 35 – 44 4,182 4,064 3,822 3,914 Aged 45 – 54 3,445 3,612 3,851 3,731 Aged 55 – 64 2,735 2,753 2,781 3,132 Aged 65 – 74 1,778 1,832 2,098 2,237 Aged 75 - 84 1,180 1,202 1,269 1,366 Aged 85 + 432 464 551 661 Total 19,538 19,882 20,634 21,321 % Increase 1.76% 3.78% 3.33%

It is extremely difficult to predict the numbers of ALD who are known to and use County Council services. The following models are all predictions of the numbers of adults with moderate / severe LD and therefore are likely to be known to the County Council.

Adults with moderate / 2008 2010 2015 2020 severe LD Dept of Health (Low) 2,904 2,955 3,069 3,171 Dept of Health (High) 3,526 3,588 3,727 3,850 Lancaster University 4,145 4,212 4,343 4,461 Suggested Adjustment 3,153 3,292 3,508 3,714

35 The suggested adjustment recognises the likely % increase in numbers of ALD but applies this on an increasing scale to the predicted numbers of ALD known to the County Council at the end of the fiscal year 2007/08

ALD known to County 2008 2010 2015 2020 Council Aged 18 – 24 384 416 445 442 Aged 25 – 34 535 572 673 731 Aged 35 – 44 756 767 775 829 Aged 45 – 54 558 612 699 708 Aged 55 – 64 427 448 489 576 Aged 65 – 74 207 223 277 303 Aged 75 - 84 89 95 107 119 Aged 85 + 30 33 42 52 Total 2,987 3,166 3,508 3,759 % Increase 5.99% 10.80% 7.18%

The increase between 2008 and 2010 can be analysed as:

ALD known to County Numbers Council Predicted 2007/ 08 2,987 Population Growth 53 Case Planning 81 Transition 45 Predicted 2009/10 3,166

ALD known to County Numbers Council Home / Day Services 72 Supported Living 90 Adult Placement 2 Hospital / Nursing Home 5 Residential Care 10 Predicted Increase 179

This analysis of the increase makes the important assumption that all future placements will be focussed on Supported Living (except for a very small number of ALD where there physical or sensory disabilities requires intensive residential care).

From the data provided, it has not been able to fully assess the use of services by people who have behaviours that challenge. The predictions from PANSI suggest the following numbers of ALD with behaviours that challenge:

ALD with challenging 2008 2010 2015 2020 behaviour Aged 18 – 24 21 21 21 20 Aged 25 – 34 33 34 37 39 Aged 35 – 44 41 40 37 38 Aged 45 – 54 36 37 40 38 Aged 55 – 64 29 29 29 33 Total 160 161 164 168 % Increase 0.63% 1.86% 2.44%

36 There would appear to be no reliable source of data to predict the numbers of people with Autistic Spectrum Disorders (ASD) who are also ALD. Some very able people with ASD may never come to the attention of the County Council because they have learned strategies to overcome their difficulties with communications and social interaction. The predictions from PANSI suggest the following total numbers of people with ASD:

Adults with ASD 2008 2010 2015 2020

Aged 18 – 24 857 889 881 833 Aged 25 – 34 1,388 1,422 1,557 1,619 Aged 35 – 44 1,710 1,660 1,556 1,589 Aged 45 – 54 1,489 1,558 1,650 1,589 Aged 55 – 64 1,208 1,216 1,224 1,377 Total 6,652 6,745 6,868 7,007 % Increase 1.40% 1.82% 2.02%

It was difficult to ascertain the numbers of ALD with Down’s Syndrome from the data provided. However, the predictions from PANSI suggest the following total numbers of people with Down’s Syndrome:

ALD with Down’s 2008 2010 2015 2020 Syndrome Aged 18 – 24 54 56 55 52 Aged 25 – 34 87 89 97 101 Aged 35 – 44 107 104 97 99 Aged 45 – 54 93 97 103 99 Aged 55 – 64 76 76 77 86 Aged 65 + 6 6 7 7 Total 423 428 436 444 % Increase 1.18% 1.87% 1.83%

Similarly, it was difficult to ascertain the numbers of people with Down’s Syndrome suffering dementia from the data provided. However, the predictions from PANSI suggest the following total numbers of people with Down’s Syndrome suffering dementia:

ALD with Down’s 2008 2010 2015 2020 Syndrome and Dementia Aged 45 – 54 12 13 14 13 Aged 55 – 64 22 22 22 25 Aged 65 + 2 2 2 2 Total 36 37 38 40 % Increase 2.78% 2.70% 5.26%

6.2 Care & Health Partners Report

In 1999, Price Waterhouse Coopers were commissioned to assess the demand for services for people with learning disabilities in Hertfordshire. The assessment concluded that the demand was high and would continue to grow.

37 Despite additional investment, the demand for services was above that anticipated with considerable overspending. As a consequence, Care & Health Partners (CHP) were asked to review and make recommendations to the original assessment.

The research conducted by CHP found that:

 The life expectancy of ALD is increasing with many surviving into middle age and for many years longer  There is a greater number of young people with complex disabilities and challenging behaviours entering ACS. Many come from out of county residential schools and colleges  Greater numbers of adults with high level autistic spectrum and Asperger’s Syndrome were being identified as needing complex and expensive packages of care  As ALD grow older, their needs become increasingly complex and require ‘add-on’ elements to their existing care packages  Many ALD leaving NHS care have mental health problems or challenging behaviours  Many ageing family carers were becoming physically frail and their sons or daughters would need statutory care in the near future.

To accommodate these changes in future caseload, CHP revised the demand model to take specific consideration of the following factors:

 The general increase in the population  The net growth (after specified efficiency savings) in client numbers over and above the general increase in the population  The known and imminent growth in client numbers  The numbers of young adults in transition to ACS

The following tables set out the CHP growth assumptions for 2007/08 and compared to the latest data from IRIS.

CHP IRIS New accommodation: Population growth 6 34 ALD growth 17 Case planning 16 18 Transition 11 15 Total accommodation 50 67 Analysed: Nursing 4 1 Residential 30 33 Supported Living 16 33 Total Accommodation 50 67 Community Services 55 38 Total New Placements 105 105 Caseload: Nursing 43 82 Residential 855 903 Supported Living 347 437 Community Services 1,599 1,508 Total Caseload 2,844 2,930

38 Note that in order to achieve consistency, the CHP numbers for Supported Living include the transfer of 256 places from ACS hostels to Aldwyck Housing made after the CHP report was published.

Although the total of placements is equal, there is a distinct shift towards accommodation placements rather than community based packages. This reflects the increasingly complexity of needs being presented by ALD coming to the placement panel.

6.3 Main observations

6.3.1 Young adults in transition

The analysis in section 3.1.1 shows a steady number of young people moving through transition into ACS (an average of 67 each year over the next five years). Many of these young people will require housing and support for their complex needs as shown in section 3.4.1.

6.3.2 NHS Primary Care

The analysis in section 4.2.6 shows that the ALD recorded on family doctor systems is LESS than the numbers known to the County Council. It would be expected that the numbers on the family doctor systems should be GREATER (allowing for ALD who do not meet the FACS criteria). The implications are that insufficient ALD are being called for annual health checks and having Health Action Plans implemented.

6.3.3 Shift in housing and support

There is a significant shift towards personalised budgets and supported living placements. Some councils have committed to increase the implementation of personalised budgets for up to 50% of all their clients. Many councils are looking to expand their supported living arrangements e.g. Partners in Support. Oldham Metropolitan Borough Council has only 20 clients left in residential care.

The following table shows the % ALD in supported living and residential care by district council.

District (Placements) % ALD % ALD %ALD In Supported Residential County Living Care Broxbourne 6.6% 4.4% 7.1% Dacorum 14.1% 9.7% 11.4% Hertsmere 10.7% 11.3% 10.9% East Herts 9.5% 12.6% 10.5% North Herts 8.0% 9.4% 10.3% St Albans 11.8% 16.9% 13.8% Stevenage 8.0% 1.9% 7.4% Three Rivers 2.9% 9.4% 6.1% Watford 13.8% 12.4% 11.4% Welwyn Hatfield 14.6% 9.5% 11.0% Unknown / Unspecified 2.5% Total 100.0% 100.0% 100.0%

All district councils should be aiming to increase their % of ALD in supported living (to in excess of the % ALD in county placements) whilst reducing the % of residential care placements.

39 The client mix in the traditional care group homes is becoming more complex. Original clients are becoming more physically frail (and in need of e.g. ground floor accommodation) whilst new clients are presenting with more complex behaviours.

Therefore, consideration should be given to ending section 28A block beds in favour of more personalised supported living placements. Direct Payments and self-directed support will only increase the need for more personalised care. Residential home providers should continue to be encouraged to give more choice of housing solutions.

6.3.4 Out of County

There are currently 507 ALD with out of county community-based or residential services (see section 3.3). It has been possible to analyse these out of county services by CLDT.

Team Community Residential Total OoC % ALD Based Placements Each Services District Broxbourn & East Herts 27 64 91 21.4% Dacorum 24 44 68 24.5% Hertsmere 23 43 66 24.9% North Herts & Stevengae 39 71 110 25.7% St Albans 15 30 45 13.5% Watford & Three Rivers 25 56 81 19.0% Welwyn & Hatfield 18 28 46 17.2% Total 171 336 507

The high % of out of county in most areas could imply one of two situations:

 It is the choice of the client to be out of county (e.g. services are more easily accessed in a neighbouring authority, the location of family carers)  There is a lack of appropriate services to meet local needs.

As evidenced by the placements out of county, there is a need for specialised services for:

 Females with learning disabilities and personality disorders  Young people with learning disabilities and high physical / sensory needs  Adults with learning disabilities / Down’s Syndrome and (early onset) dementia  Adults with learning disabilities with severe challenging behaviours / high physical needs  Young adults with learning disabilities and high functioning autistic disorders (e.g. Asperger’s Syndrome).

6.3.5 Day Opportunities and Transport

The ‘Fulfilling Lives’ project is making significant changes in the way that day services are provided. The analysis in section 4.3.5 shows that such services will have to respond positively to more ALD requiring special care e.g. aged over 50 years, use wheelchairs.

This increase in complexity of care and the move to ‘hub and spoke’ day centres could increase the use and type of transport service being provided. The assessment of transport requirements to the various hubs and spokes needs to continue with the aim of maintaining costs within the existing budget.

40 6.3.6 Categorisation of Support

During the course of completing the needs assessment, it became apparent that the three databases used varying categorisation of support, although all had a common basis i.e. the level of staffing required.

The following table attempts to compare the varying categorisation of support. It suggests that the main databases should use a common (5 part) basis for categorising levels of support (using the Placement criteria):

 Low to Moderate  Moderate  Moderate to High  High to Very High  Very High to Exceptional

The 5 categories for need can be allocated an average range of expenditure and used to predict future budgets.

Placements Individual Day Likely Needs Likely range Budgets Opportunities of staffing levels Low N/A Potentially Independent living N/A Low to independent Moderate

Moderate Moderate for Mainstream Vulnerable if 1:5 to 1:10 appreciable unsupervised needs Autistic Spectrum Disorders

Mental health problems

Epilepsy 1:2 to 1:4 Moderate to Medium for High substantial Physical / Sensory needs Needs High Over 50 years Downs Syndrome / Dementia

As above with: Special care Higher Physical / 1:1 to 1:3 Sensory Needs

High to Very Intensive for Special needs As above with: High high needs Challenging 1:1 to 1:3 behaviours Very High Very intensive With 2:1 Exceptional for complex Forensic history where needs necessary

41 6.3.7 Learning Disabilities Dementia Services

There is evidence from the IRIS and Placement databases (see under Likely Needs in the above table) that there is increasing numbers of ALD (especially those with Down’s Syndrome) who are suffering early onset dementia. Currently, there appears to be little dedicated ‘hands-on’ support for either the challenging behaviour or physical dependency phases of dementia. Advice to ALD and their carers is available through the NHS-run memory clinics.

6.3.8 Intensive Support Team (IST)

The IST is supposed to prevent unnecessary admissions into inpatient facilities. However, as IST is a mainly a ‘week day’ service, situations can often deteriorate outside of working hours. In these circumstances, the referral is likely to be made to the emergency duty team for a medical opinion. With little alternatives, this is likely to result with an inpatient admission. The work of the IST needs to be extended to provide emergency support ‘out of hours’ – and to gate-keep access to social crisis housing and inpatient facilities.

6.3.9 Community Learning Disabilities Team (CLDT)

For the future, the most significant aspect of community services will be their ability to manage ALD who display challenging behaviours. The Revised Mansell Report argues that the acid test Is:

Whether community services continue to get better depends in part on how they respond to challenging behaviour, not just in the small number of people who present exceptional problems at any one time, but throughout their service.

If they develop the capacity to work with people who present challenges in small local services they will keep the size of the problem to a minimum and will provide a good service to individuals in both their mainstream and specialised services.

It is felt that the traditional residential care homes are not fully trained to adequately support ALD who display challenging behaviours. As a consequence, there appears to be a tendency for residential care homes to end contracts / refuse re-admission. More intensive (nursing) support is needed to ensure that ALD remain in their homes – or are able to return to their homes after their inpatient admission. Therefore, a key focus of the CLDT (supported by the IST) should be to give advice and support to the management of challenging behaviours in the home of ALD.

6.3.10 NHS Continuing Care

Section 4.3.11 shows that there are 120 ALD recorded as being in receipt of NHS Continuing Care. Of these, 85 are in out of county placements. It is recognised that there needs to be a care review of these clients (and those diagnosed with epilepsy at St Elizabeth’s) to re-assess their health needs (linking with the FACS process). Where appropriate, clients should be moved to alternative housing and support packages.

6.3.11 NHS assessment & treatment services

As shown in sections 4.4, lengths of stay in the majority of the NHS specialised services are in excess of those now recognised as being good practice. This would imply that the treatment and discharge processes are not successful and that alternatives need to be found. The HJCT purchases 35.5 assessment & treatment beds from HPFT (including the tertiary assessment & treatment beds on the Harperbury site). This number of beds is greater in proportion to that used in neighbouring systems.

42 Herts Beds Cambs & Norfolk Pboro Purchased Beds 35.5 8.0 10.0 12.0 ALD Known to Council 2,930 1,319 1,627 2,381 Beds / 000 ALD 12.1 6.1 6.1 5.0

Applying the mean value of 6.1 beds / 000 ALD would suggest that the HJCT should purchase around 18 beds for acute assessment and treatment.

There is evidence that some of the excessive lengths of stay are not because the client is unfit for discharge but that their housing or support package has been terminated. For continuity of care, it is important that Social Care Managers fully participate in the assessment process (including agreement of the discharge date) and remain engaged with the client during their inpatient stay. Similarly, it is important that residential care home staff follow and remain engaged with the client during their inpatient stay.

The lengths of stay in the Kestrels far exceed the 6 months intended for ALD requiring longer rehabilitation (see section 4.4.5). As such it is operating in a similar fashion to the specialised residential services and clients should be considered and assessed as being under the DH definition of a campus.

Similarly, the lengths of stay of the remaining residents in Crossways are significantly longer than is felt appropriate (see section 4.4.6.2). Risks assessments should be undertaken and if appropriate efforts made to find alternative placements (possibly under supervised community orders).

7.0 Key Recommendations

7.1 Information Systems

In the course of preparing the JSNA, it has been necessary to access eight separate data bases. Although valuable information is held on each, it has been difficult to cross-reference the same ALD across the data bases.

Recommendation: That the transitional, IRIS and placement databases are reconciled at least twice a year. Recommendation: That fields relating to co-morbidities are made mandatory on the IRIS data base

 Epilepsy  Autistic spectrum  Down’s Syndrome  Mental health problems  Dementia  Carers

Recommendation: That the proposed ‘categorisation of support’ is recorded on the data bases to enable better population projections

7.2 Young adults in transition

There are an increasing number of young adults moving through transition and with a greater range of complex needs.

Recommendation: That the transitions team becomes operational as quickly as possible to provide the much needed link between the Connexions Service, ACS and HPCT (especially where the young adult was receiving Children’s Continuing Care)

43 Recommendation: That the transitions team is expanded to support young people to live on their own. Supported living facilities are found that would allow young people to be with friends.

7.3 NHS Primary Care Services

Only 81.3% of the ALD known to the Council are recorded on family doctor systems.

Recommendation: That links are made between HPCT and ACS to ensure that ALD recorded on family doctor systems is at least equal to the ALD known to Council. Recommendation: That support is given to HPCT in the implementation of the DES for ALD through the joint appointment of Strategic / Health Action Plan Facilitators.

7.4 The way to employment

Work Solutions were able to help 2.8% of the ALD known to the Council into employment during the fiscal year ending 2008.

Recommendation: That the Service Development Manager for Employment co-ordinates the activities of such organisations such as Work Solutions, Job Centre Plus and the Day Opportunities Services to significantly increase the numbers of ALD in paid or voluntary posts. Recommendation: The ALD identified as ‘potentially independent’ on the Day Opportunities database to be given a fuller range of vocational / employment support.

7.5 Direct Payments

As at the end of March 2008, some 4.3% of the ALD known to the Council were in receipt of Direct Payments.

Recommendations: That the Council sets itself and achieves a ‘stretched’ target for ALD in receipt of Direct Payments.

7.6 Shifting to Supported Living

The majority of placements are within residential care (57.2%) and not supported living (42.8%). In line with national policy, every effort should be made to facilitate the move of ALD into supported living where they choose to do so.

Recommendation: That the focus for all new placements should be on supported living. Recommendation: That further contracting effort is made (and through the Provider Forum) to evaluate the effectiveness of ‘block’ purchasing of residential homes Recommendation: That a plan is drawn up and timescales set for the assessment of ALD in residential homes to see if they would benefit by moving into supported living

Recommendation: That the role of Supporting People is reviewed in the light of the shift from contracted residential care to tenanted supported living Recommendation: That further work is undertaken on a financial forecasting model that uses the data set out in this JSNA

7.7 Out of County

There are currently 507 ALD (17.4%of ALD known to the Council) placed out of the county. Reducing the numbers of ALD in out of county placements should lessen the workload of the CLDTs.

Recommendation: That there is a review of the out of county placements to determine:

44  Whether the placement is appropriate  Whether residential care continues to be the best way of delivery care  Whether ALD can be repatriated back into the County

Recommendation: That consideration is given to providing placements in-county for:

 Females with learning disabilities and personality disorders  Young people with learning disabilities and high physical / sensory needs  Adults with learning disabilities / Down’s Syndrome and (early onset) dementia  Adults with learning disabilities with severe challenging behaviours / high physical needs  Young adults with learning disabilities and high functioning autistic disorders (e.g. Asperger’s Syndrome).

7.8 Transport

Recommendation: That the provision of transport is periodically reviewed in light of the change in day services and more complex needs of ALD.

7.9 Intensive Support Team

Current working arrangements prohibit the team from being the ‘gate-keeper’ to the assessment & treatment inpatient services.

Recommendation: That the IST is expanded in such a way that it is able to provide full emergency cover around the clock and so prevent unnecessary admissions to either emergency respite or inpatient facilities. The IST should gate-keep access to social crisis housing and inpatient facilities. Recommendation: That consideration is given to facilitating much closer working relationships between the IST and mental health crisis resolution services.

7.10 Social Crisis Housing

Recommendation: That use of emergency respite / admissions to assessment & treatment is kept under review to establish whether more dedicated facilities would be beneficial.

7.11 Community Learning Disability Teams

It is felt that the traditional residential care homes are not fully trained to adequately support ALD who display challenging behaviours.

Recommendation: That the role of and staff numbers in the CLDTs is reviewed in the light of the increasing demographic profile of ALD outlined in this JSNA – and the increasing need to be involved in safeguarding issues Recommendation: That consideration is given to establishing a specialised ‘hub’ of staff (e.g. including behavioural psychologists) capable of advising others in the management of challenging behaviours, dementia, epilepsy and forensic behaviours.

7.12 Continuing Care

In April 2009, the budget for learning disabilities continuing care will transfer from HPCT to HJCT.

Recommendation: That there is a review of the care needs of ALD receiving continuing care and that ALD are enabled to move to alternative housing and support packages should they choose to do so.

45 7.13 Through NHS specialised services

The lengths of stay in the majority of NHS specialised services are in excess of those recognised as being good practice. This implies that the treatment and discharge processes are not successful nd that alternatives need to be found.

Recommendation: That the care pathway and lengths of stay through NHS specialised services is urgently reviewed with HPFT and that plans and timescales put in place to achieve lengths of stay in line with good practice in line with Appendix C.1.4 Recommendation: That serious consideration is given to reducing the numbers of assessment & treatment beds as set out in section 6.3.11 Recommendation: That consideration is given to re- investing the savings from reduced inpatient beds in:

 Increasing respite to families caring for ALD who display challenging behaviours  Providing more day opportunities tailored to ALD who display challenging behaviours or have mental health problems  Finding ways to expand the IST so that it becomes an all hours service (e.g. through facilitating greater co-operation with the mental health crisis teams)  Better management of provider contracts for ALD who display challenging behaviours / mental health problems (e.g. by insisting on minimum standards for staff training, that care home staff remain ‘connected with their clients throughout the inpatient admission)  Providing a limited number of social crisis placements managed by the IST  Expanding the CLDT / IST to focus on actively support colleagues and providers in managing ALD who display challenging behaviours  Establishing a new assessment & treatment service (e.g. of around 16 / 18 beds) co- located with the IST and a mental health inpatient facility that has the skills to quickly assess and treat ALD with mental health problems  Extending the assessment & treatment outreach service to give short time limited post- discharge support to ALD returning to their residential care and supported living  Better commissioning case management.

Recommendation: That Care Managers fully participate in the assessment process (including agreement of discharge date) and remain engaged with ALD during their inpatient stay. Recommendation: That contracts with residential care home providers state that ending the stay of ALD on admission is unacceptable and that care home staff are expected to be trained in the management of challenging behaviours and remain in contact with ALD throughout their inpatient stay. Recommendation: That the community care assessments and person centred plans for ALD in NHS specialised services are completed quickly and services put in place to meet the needs and aspirations of ALD (e.g. as set out in Appendices C.2.8 and C.2.9) Recommendation: That links between the Probation Service, Forensic Community Team, CLCDT and the East of England Specialised Commissioning Group are improved so that ALD who are a potential risk to the public receive the necessary care in a timely manner Recommendation: That the commissioning of services for ALD needing low and medium secure services should pass to the East of England Specialised Commissioning Group Recommendation: That in conjunction with the East of England Specialised Commissioning Group consideration is given to establishing a more local service for female ALD and personality disorders.

46 Appendix A1: Bibliography of Joint Strategic Needs Assessment

 National Health Service Act 1977  NHS and Community Care Act 1990  Health Act 1999  Valuing People: A new strategy for learning disabilities in the 21st Century (DoH, 2001)  Local Authority Circular (2002) 13: Fair Access to Care  Specialised Learning Disabilities Services – Access to Services (HPFT, 2004)  Estimating future need / demand for supports for adults with learning disabilities in England (Lancaster University, 2004)  Modelling demand and future costs (of Hertfordshire learning disabilities services) (Care and Health Partners, 2005)  Pressures on learning disability services (ADASS, 2005)  The commissioning challenge: learning disabilities (NHS Confederation, 2005)  Fair Access to Care criteria (Hertfordshire ACS)  Disability Discrimination Act 2005  Our Health, Our Care, Our Say (DH, 2006)  Equal Treatment – Closing the Gap (DRC, 2006)  National Health Service Act 2006  Better Health, Better Metrics (FPLD, 2006)  Death by Indifference (Mencap, 2006)  National Framework for NHS Continuing Healthcare (DoH, 2007)  Commentary and Advice on the National Framework for NHS Continuing Healthcare (ADASS, 2007)  The role of needs analysis in developing a commissioning strategy (CSIP, 2007)  Guidance on Joint Strategic Needs Assessment (DH, 2007)  The JSNA core data set (APH, 2007)  Revised Mansell Report (DH, 2007)  People with learning disabilities in England (CeDR, 2008)  Life Like No Other (HC, 2007)  Valuing People Now: A New Three Year Strategy (DH, 2008)  Healthcare for All (DH, 2008)  Healthcare of people with learning disabilities in the East Midlands (SHA, 2008)  Direct Enhanced Services for adults with learning disabilities (BMA / NHS Employers, 2008)  LAC (DH) (2008) 1: Transforming Social Care

Appendix A2: Bibliography of Specialised Learning Disabilities Services

 Development of commissioning frameworks for learning difficulties in Norfolk (Bob Mee, 2004)  Norfolk Assessment & Treatment Strategy (NCC, 2006)  Forensic Learning Disabilities Service Protocol (EoESCG, 2006)  Admission & Discharge Protocol (Colchester PCT, 2006)  Specialist Learning Disabilities Strategy (Leeds MHT, 2006)  Commissioning Specialist Adult Learning Disability Health Services (DH, 2007)  Services for PLD and Challenging Behaviour or Mental Health Needs (DH, 2007)  Commissioning Intentions (EoESHA, 2008)

47 Appendix B: Acknowledgement for people consulted

This report could not have been completed without the help and advice of many people. Particular thanks are due to Steve Eaglesham for his patience and perseverance in extracting data from the IRIS database, Sheila Daley for providing extracts from the Placement database and Alan Osman for providing extracts from the HPFT database. The following staff from Hertfordshire Joint Commissioning Team, Hertfordshire Adult Care Services, Hertfordshire Primary Care Trusts and Hertfordshire Partnership Foundation Trust all gave of their time to share their knowledge and experiences of local systems.

Mark Jordan Hertfordshire Joint Commissioning Team Judith Jackson

Sue Darker Hertfordshire County Council Helen Duncan-Turnball Cathy Kerr

Alan Hadwin Tricia Orme

Louise Sampong

Rose Geraghty

Kevin McAuliffe Steve Eaglesham

Fiona Marnell Melanie Parker

Dee Millar Kim Ho Tony Edwards Sheila Daley

Amanda Selley Work Solution Kath Barnes Job Centre Plus

Pam Handley Hertfordshire Primary Care Trusts Carol Hill Sarah Damms Anne Jones Menaka Edirisinghe

Patricia Halliday Hertfordshire Careers Service

Anne Webster Hertfordshire Partnership Foundation Trust Mike Barratt Matt Stewart

Asif Zia Cambridgeshire & Peterborough MHT Bob Mee Norfolk Learning Difficulties Services

48 Appendix C: Additional comments on specialised NHS learning disabilities services

C.1 Good Practice

C.1.1 National Definition Set (21)

The Valuing People white paper emphasised the need for ALD to have access to the full range of health services. The vast majority of ALD live in local communities and receive support from local services. However, a minority of ALD will have severe and complex needs that will require specialised service provision. These services should offer inpatient assessment and treatment to any ALD who requires more intensive support than local services can provide. The National Definition Set (21) for specialised learning disability services states that:

The purpose of these inpatient facilities is to provide intensive assessment and treatment on a short term basis3. The goal will be for [ALD] to return to live in their communities with support packages that adequately meet their particular needs.

It is important that there continues to be a strong incentive to bring ALD back to their local communities through the integration of commissioning both local and specialised services.

Under the National Definition Set, specialised learning disabilities services are seen to be:

Inpatient assessment, treatment and associated outreach for people with severe complex needs that cannot be managed by local services that are for:

 ALD who have severe challenging needs and present major risks to themselves and / or others  ALD and severe mental health problems that cannot be addressed by general psychiatric services  ALD with autistic spectrum disorders with severe challenging and / or mental health needs.

The services should not be seen as a long term option.

C.1.2 Commissioning Specialised Adult Learning Disability Health Services

This Good Practice Guide described the key components of specialised learning disabilities services. The staff in such services have essential clinical and therapeutic roles that include:

 Support to ALD and their families when their needs cannot be met by mainstream services  Longer term support to ALD, their families and service providers where there are complex and continuing health needs  Emergency support through joint protocols with local mental health services.

The specialised staff should focus their support on ALD with behaviours that challenge, have additional mental health needs or a history of offending. Using the terminology from mental health services, the functions of the specialised community staff should include:

 Early intervention – to support young people in transition and their families  Crisis resolution - to prevent unnecessary admissions to hospital through a 24 hour service  Assertive Outreach – to support ALD with severe or profound disabilities.

3 Author’s italics 49 There needs to be investment in these functions if there is not to be an over reliance on unnecessary hospital or nursing home placements.

For a small number of ALD, they will need to access specialised inpatient services. However, if the community services are functioning correctly, there should only be the need for a handful of such beds. It is vitally important to distinguish between genuine need for the specialised beds and their inappropriate use as an available resource that often cause ALD to be ‘stuck’ in facilities far from their originating communities.

Wherever possible, ALD requiring mental health inpatient services should access the local mainstream services. However, it is recognised that such services may lack the necessary skills to work with ALD, so that ALD could be placed in a vulnerable position.

An important component of specialised learning disabilities service are those which support ALD who have offended or at risk of offending. Where forensic services are delivered, they should have the following basic principles:

 The services should be community based rather than in institutional settings  ALD should be placed in conditions of no greater security than is justified by the degree of danger than they present  The services should maximise rehabilitation and chances of sustaining an independent life  The services should be as near as possible to the homes and families of ALD.

The linkages between forensic services are very important. There needs to be close working relationships between the specialised learning disabilities services and mental health, drug and alcohol and the criminal justice systems.

Finally, the Good Practice Guide was very clear that ALD should NOT use NHS beds for continuing care unless they have highly complicated, unpredictable or rapidly deteriorating / terminal primary health needs. A key principle should be that ALD with behaviours that challenge should be provided with:

ordinary housing and support services, in the least restrictive environment possible, with opportunities to lead full and purposeful lives.

That is any additional and specialised continuing health care support should be provided into the ordinary living environment of the ALD rather than in an NHS bed.

C.1.3 The Revised Mansell Report

As noted above, this report recognised that progress in respect of services for ALD with challenging behaviours had lagged behind expectations. As a consequence, there continued to be an increase in the use of expensive placements away from the homes of ALD and not necessarily of the best quality. Commissioning remained ‘reactive’ and had become dominated by having to manage crises.

The report strongly recommended that commissioners should give priority to:

 Expanding the capacity and understanding of local services about ALD with challenging behaviours  Providing specialised skills to mainstream (Local Authority, private and voluntary) services that support ALD with challenging behaviours  Providing specialised staff in support a small number of ALD with severe challenging behaviours  NOT increasing the burden on family carers by reducing levels of service.

50 In respect of learning disability services, the report strongly recommended:

 Opportunities for short breaks should be available to every family that supports ALD with challenging behaviours  The end to placements that are either far from home or do not provide ‘individualised’ care in a good quality environment  ALD with challenging behaviours have access to innovative day opportunities. Where ALD are excluded from day centres because of their challenging behaviours, alternative day, education and supported employment opportunities  The setting up of specialised multi-disciplinary support teams that are focussed on challenging behaviours. The teams should support managers in the provider network in training their staff to better understand and manage ALD with challenging behaviours  The provision of emergency (24 hour / 7 day week) support for ALD with challenging behaviours  The role of psychiatric hospital services to focus on short term intensive assessment & treatment of mental health problems. The implication being the need for a small service offering very specific, closely defined, time limited services.  Wherever possible, alternatives to hospital admissions should be considered and implemented.

C.1.4 Evidence from other systems

Evidence has been taken from other systems on how they operate assessment & treatment inpatient services. There is a consensus that CLDT should keep in close contact with and focus on clients at most risk of needing an admission. At times of potential crisis, the advice of the medical staff is sought and as a consequence, it is rare for there to be an emergency admission. The discharge date of the patient is effectively agreed before the admission.

Average lengths of stay depend on the needs of the patients but can be summarised as:

 Social crisis / SOVA up to 3 weeks  Acute stabilisation up to 6 weeks  Relapse admission up to 12 weeks  Forensic / rehabilitation between 3 and 6 months

The relapse length of stay reflects the need to address underlying chronic psychotic problems.

C.2 How do the Hertfordshire specialised learning disabilities services compare with the recommended Good Practice?

C.2.1 Access to mainstream services

Regrettably, at the time of this report, the outcome of the county-wide self assessment of NHS health services for ALD was not available. However, the anecdotal national picture is one where primary care:

 Does not have complete registers of ALD and their family carers  Does not make sufficient ‘reasonable adjustments’ to meet the health care needs of ALD  Does not ensure ALD receive annual health checks and an Health Action Plan  Does not actively recall ALD for health screening e.g. Body Mass Index checks, breast screening, cervical screening.

51 The establishment of the Acute & Primary Liaison Health Facilitation Team is a positive step in ensuring ALD are supported when accessing NHS hospital services. However, there is no evidence of similar Health Facilitator, who could offer support and advice to ALD when accessing primary care services.

C.2.2 Early intervention / transition support team

The transition from Children’s Services to Adult Care Services has been disjointed. The establishment of the Transition Team should facilitate a smoother transition and help manage parental expectations. However, it appears that PCT staff have yet to become involved in planning services after the transition, especially where the young people have identified complex or profound health needs.

C.2.3 Crisis resolution / intensive support team

Although set up to work flexibly on a planned basis, i.e. with cover for weekends, bank holidays, nights, this has not happened in reality. This prohibits the team from being the ‘gate-keeper’ to the assessment & treatment inpatient services. To do so, the service would need to be established as a 24 hour / 7 day week outreach service i.e. the service is the ‘front’ face of the assessment & treatment services.. The degree of co-operation and working between the IST and the mental health crisis resolution service was not clear.

C.2.4 Assertive outreach / Community learning disability teams

As highlighted in section 6.3.9 above, a key role of the CLDT should be to actively manage ALD who display challenging behaviours within their homes and local community. The evidence shows that in several instances, displaying challenging behaviour has led to an unnecessary inpatient admission.

C.2.5 Community Support / Tertiary assessment & treatment inpatient services

As highlighted in sections 4.4, lengths of stay in the majority of the NHS specialised services are in excess of those now recognised as being good practice. The focus of the assessment & treatment inpatient services should be to provide short and intensive care to ALD with severe mental health problems. Section 6.3.11 goes further and suggests that in achieving lengths of stay in line with good practice, the numbers of beds could be significantly reduced.

It is fully recognised that in order to reduce the lengths of stay, other service elements within the pathway would need to change. The savings through reducing the numbers of beds could be re-invested in:

 Increasing respite to families caring for ALD who display challenging behaviours  Providing more day opportunities tailored to ALD who display challenging behaviours or have mental health problems  Finding ways to expand the IST so that it becomes an all hours service (e.g. through facilitating greater co-operation with the mental health crisis teams)  Better management of provider contracts for ALD who display challenging behaviours / mental health problems (e.g. by insisting on minimum standards for staff training, that care home staff remain ‘connected with their clients throughout the inpatient admission)  Providing a limited number of social crisis placements managed by the IST  Expanding the CLDT / IST to focus on actively support colleagues and providers in managing ALD who display challenging behaviours  Establishing a new assessment & treatment service (e.g. of around 16 / 18 beds) co- located with the IST and a mental health inpatient facility that has the skills to quickly assess and treat ALD with mental health problems  Extending the assessment & treatment outreach service to give short time limited post- discharge support to ALD returning to their residential care and supported living 52  Better commissioning case management.

C.2.6 Community Forensic Team

It was not clear from the evidence how often the service is actively involved with ALD who enter the Criminal Justice System. As evidence from a recent Serious Concern has shown, there appears to be the need for much better co-ordination between the Probation Service, the Forensic Community Team, the CLDT and East of England Specialised Commissioning Group. Better co-ordination should ensure that ALD who are a potential risk to the public are identified and that they receive the appropriate secure care in a timely manner.

C.2.7 Forensic medium secure

ALD requiring medium secure services are most likely to use the Eric Shepherd Unit. The Unit appears to be operating with lengths of stay that are in line with good practice. The service is for males only and there is increasing evidence of the lack of services for females with learning disabilities and personality disorders.

C.2.7 Forensic low secure

The lengths of stay of the patients at the Crossways facility need to be reviewed. Whilst it is appreciated that some ALD will remain under restriction orders, it would appear that greater effort could be made to move patients into supervised and intensive supported living accommodation. The commissioning of this service should pass to the East of England Specialised Commissioning Group in April 2009.

C.2.8 Continuing rehabilitation

Similarly, the lengths of stay in the Kestrels are not in line with good practice. Whilst there may be a need for a small service that actively facilitates rehabilitation back into the community, this should not be in an ‘institutional’ setting. It is accepted that The Kestrels is a form of campus and the HJCT is undertaking assessments to move ALD to more appropriate settings.

C.2.9 Specialist Residential Services

It is recognised that the Specialist Residential Services (SRS) meet the DH definition of a campus (i.e. ALD living in the NHS and for whom the NHS is landlord). This means that the ALD in the SRS have no housing rights. As providing housing with support is not a NHS function, there should be no further admissions to the SRS. Good practice dictates that ALD living in the NHS should have a full Section 47 community care assessment and person centred plan to determine their individual needs. This work is well underway with the aim of developing new and augmenting existing housing and support services for ALD with complex needs.

However, many of the residents are sectioned under the Mental Health Act or could be deemed to be subject to ‘deprivation of liberty’ as set out in the Mental Capacity Act (Bournwood Judgement). Work is underway to establish the most appropriate model of service for these ALD in line with the good practice set out above.

53 C.1 Through NHS forensic services

Community Forensic Services

Supported Living with Relapse prevention with Relapse prevention with Intensive / Forensic high support low support Support

Treatment Responsive

From 4.4

Assessment / Care Medium Secure Core Formulation Treatment Programmes Risk Assessment & Low Secure Discharge Programme Rehabilitation Services

Not Treatment Return to Criminal Justice Responsive System