Winter 2020-2021 Number 141 INSIDE What’s Next?...... 3 What Pre-Exists What...... 5 Courts Watch...... 7 More Police Violence...... 10 Where are the Missing Nursing Home Residents?...... 11 The Incredible Shrinking Deficit... 12 Xscapes Holiday Special...... 13 Brand New 60-Minute Escape Room Experience...... 13 I clearly remember December 31, 2019, too heavy to sustain, and we inevitably When Big Companies Come sitting before the television, watching fell behind in several areas. Still, even in Through Big!...... 13 the ball in Times Square descend, ready this I can feel gratitude for the quality of to usher in a brand new year. As the our employees and the commitment they You Can’t Touch This: Advocacy in the Time of COVID...... 13 countdown reached zero, we hugged and have to STIC. We Need Your Help...... 14 wished everyone a happy and prosperous Of course, like most employers, we had New Year, hoping for a better tomorrow. to move people to working from home, a Accessible COVID Testing...... 15 That was then, but now we can’t or process we were not especially prepared NY Medicaid Removes shouldn’t hug, we should stay parted by to do. It isn’t just a matter of them tak- Visit Limits...... 15 six feet of space, or even better, be talking ing their computers and related equipment home, and working in a different setting. via Zoom or other online mechanism. forced isolation has been difficult for Staff needed to have adequate internet ser- All of us gripe about the COVID-19 re- some to understand, and very harmful to vice, and we had to install the appropriate their mental health. Services are deliv- strictions, including myself. Yet how for- software on every computer so they could ered in the safest manner possible, though tunate we all are that we still have our connect to STIC’s various servers to ac- many employees are risking their health health and our lives, and the strength to cess critical information, and that had to and safety, and that of their families and complain. As I look back over this long, be done with cyber security in mind. Once households, to continue to provide face- seemingly endless span of months, I am again, employees met the challenge, and to-face support. They are putting their reminded that things can always be worse, we moved almost 100 staff members off- lives on the line in CDPA, Community and I worry that grim days are ahead until site to their own homes. I have to say that Hab, Supported Employment and other a vaccine is found and distributed. it is working better than I would have programs, to help people with a wide va- What has 2020 meant for STIC? imagined it could. riety of disabilities to weather the storm. It Sadly, we had to lay off more than 20 A few of us did remain in the building, is very sad and unfortunate that our gov- employees, not because they weren’t val- but it became a very lonely place. Even ernor and legislature have not thought to ued and needed for the contributions they now, though we have brought back about reward them for their courage and dedi- have made to STIC, but because we have 25 people, it still feels empty, as we avoid cation with hazard pay, though we have lost revenues and just couldn’t afford to one another for safety reasons, follow ar- advocated for it throughout the pandemic. keep them. Yet the work had to get done, rows to our destinations, and, of course, Instead, they are withholding 20% of our so the chores were split among remain- wear masks. I can hear the voices around state contract reimbursements, which we ing employees, putting a great strain on me, but I miss the personal interactions may or may not ever get back. This isn’t everyone. Like the troopers they are, very much. a cut, it simply means that for every dol- however, they absorbed the work without The people we serve have probably suf- lar we spend, we only get back 80 cents. complaint, even though the workload was fered the most. Many are alone, and the It won’t help to cut the budget by 20% because we’ll only get 80% of the money Politics and the election, no matter whom AccessAbility no matter what we change. The Governor you voted for, also created significant ten- calls it a “withhold” because we “might” December 2020 sion and stress for many Americans, and get it back if the federal government ever STIC employees were no different. Dur- EDITOR IN CHIEF: MARIA DIBBLE extends a hand and provides relief funds ing the election process we saw what a MANAGING EDITOR: KEN DIBBLE to the state. I’m rather pessimistic at the divided people Americans are at the mo- EDITOR: ELIZABETH SIGNOROTTI prospect of ever seeing those dollars again ment. This is possibly an even larger di- (see page 12 for more). LAYOUT: RUSSELL RICHARDSON saster than the virus presents. AccessAbility is published seasonally It has been a brutal year, one of the worst And amid all this, African Americans rose (Spring, Summer, Fall, Winter) by I’ve experienced in my 37 years as STIC’s up against more senseless deaths at the Southern Tier Independence Center. Executive Director, and I dare say that our hands of the police, and in doing so, they Letters, information, articles and ads are employees feel the same. We’ve lost a lot of money, though we’ve been fortunate spoke for many Americans with disabili- always welcome. Deadlines are February to receive other support from the federal ties as well who also died in that way, and 15, May 15, August 15 and November 15. government, through the Payroll Protec- expressed the pain we all feel over more lives lost forever. Yet all over the nation, Our address is: tion Program and other sources, prevent- in towns large and small, many white AccessAbility ing STIC from losing many more millions of dollars and having to lay off many more Americans joined them, bringing a sense Southern Tier Independence Center people. There is nothing more difficult to of hope that perhaps we can all care for 135 E. Frederick Street do than tell an employee s/he doesn’t have each other and work together. Binghamton, NY 13904 a job anymore. No matter how gentle and understanding you are, the fact is that s/he We are strong as a country. We will have a Subscriptions is unemployed, a terrible blow to the em- vaccine and recover from the virus. It is our Subscriptions are $10 per year (4 issues). ployee and family. It literally sometimes choice and our actions that will determine Subscriptions are voluntary, but very haunts my dreams. whether or not we will recover and become much needed to help cover newsletter pro- truly the United States of America. Let us not forget that with all the numbers duction costs. Use the form on the back to and economic facts about the country’s In conclusion, 2020 is not a year I’d want subscribe. outlook, that the human factor is what to relive, and I know that 2021 will have drives everything. People are the back- its own set of problems, but I urge every- Advertisements bone of what we do and what we accom- one to take a moment to appreciate what AccessAbility prints unclassified ads free plish. This pandemic has been a terrible we have, our families, our friends, our co- for disabled consumers, unless they pro- thing. So many people died, and more workers and our futures. Also, let’s take a mote a for-profit business. For-profit busi- are dying again. It has divided us more moment to remember all who have fallen nesses can advertise in AccessAbility, in than we were already, and it is gaining a from the virus, and the people who have Un-classifieds or a display ad, at our regu- foothold once more throughout the coun- lost loved ones, and let’s send them our lar rates. Ask the editor for information. try. Many people who never had mental prayers, or our thoughts and hopes that health issues are now feeling the impact of Reprints loss, of isolation and inability to see loved they can find peace in the new year. Any non-copyrighted information ones, and the state of our economy. Stay well, wear a mask, and be at peace. originating in this newsletter may be re- printed without permission. If you want to reprint an article or opinion piece, please credit AccessAbility and the author.

Authorship All articles appearing in this newsletter are written by Ken Dibble unless other- wise noted. Generally, I get tired of seeing my name on every page, and I’d rather use the space for something more interesting. I do put my name on controversial stuff, though, so you’ll know who to blame.

www.stic-cil.org 2 it was shorn of the “public option” and loaded up with what were essentially cash bribes to get insurance company lobbyists What’s Next? off the members’ backs. The result was a It’s lame duck season: the period between pick up at least 9 Republican votes to pass disjointed, cumbersome jumble that helps Election Day and Inauguration Day, when anything in the Senate. Biden has sent some more people get insurance—though people enjoy speculating about how mixed messages about the idea, but if the not all who need it, by far—at a cost of things are going to change with a new ad- Democrats get rid of it they will surely re- potentially making it harder for a lot of ministration. We at AccessAbility are not gret it the next time they are in the Senate people to get really top-quality insurance, immune to that temptation, so here’s our minority, so it’s pretty unlikely they will while imposing huge management bur- take on what the Biden Administration do that. dens on employers. As the Times research- will mean for people with disabilities. ers put it, “Single-party partisan control The situation in the House is not that of the federal government is overrated. Although Biden, a Democrat, is known for much better for the Dems, even though Majority parties find legislative success his ability to get along, and compromise, they have a majority and there’s no fili- especially through two paths: Either they with Republicans, his situation is going buster rule. The majority is tiny; as of No- propose something that can garner broad to stretch those talents to the limit. At this vember 30, the Democrats had won 222 support in both parties, or they back down writing in mid-November, control of the seats—just four more than needed—with from the more contentious aspects of their Senate remains undecided. Two run-off seven seats as yet undecided. Lots of those legislative proposals.” elections in Georgia will take place on Democratic Representatives are “moder- January 5. If Democrats win both, the Sen- ates,” and a few are pretty right-wing, and So it’s possible that the new Congress will ate will be 50-50 Democrats and Republi- that means there will be no highly “pro- pass another reasonably large COVID cans, with Vice President Kamala Harris gressive” legislation passed there. bail-out bill, which all Democrats and as the tie-breaker. Some speculators think some Republicans support, but at best, the odds are heavily stacked against one In fact, very little of what Biden has said McConnell will exact a very high price Democrat winning in Georgia, let alone he wants to do may get done legislatively for it, starting with immunity from law- two. But the fact that Biden won the state before the 2022 mid-term elections. No suits for medical providers, nursing facili- by over 12,000 votes (as it stood before big tax increase, no massive global warm- ties, and pharmaceutical companies for the second recount) argues that some- ing infrastructure bill, no big policing anything that can be remotely related to thing has changed in the Peachtree State. reforms, and, most likely, no comprehen- the pandemic. Biden will have to grit his If both Dems win then Harris’s vote will sive replacement for Obamacare if the Su- teeth and bear it, and keep things friendly, make NY Democrat Chuck Schumer the preme Court declares it unconstitutional because if McConnell chooses to be as Majority Leader, but he will still have to (more on that last one elsewhere). obstructionist as he was with Obama, then cut deals with Republican Mitch McCon- However, and perhaps surprisingly to almost no legislation of serious conse- nell for almost everything, including com- some, this is nothing new. A couple of po- quence, other than continuing resolutions mittee assignments. Also, under Senate litical scientists, one from the University for appropriations, will pass. rules most measures effectively require 60 of Utah and one from Princeton Univer- Many have speculated that Biden will votes for passage due to the filibuster rule. sity, published a brief description in the have to issue Executive Orders to get any- A filibuster used to require one or more New York Times of a study they did on the thing done, like Obama and Trump. The Senators to continuously hold the floor effect single-party control of the federal problem with this is that the President’s for “debate” by speaking, day after day, government has had on legislation. They legal authority to issue those orders is re- and night after night (as in the great old analyzed over 250 legislative proposals ally quite limited. Several of Obama’s or- Jimmy Stewart movie, Mr. Smith Goes between 1985 and 2018, from both par- ders were blocked in court, and many of to Washington), on just about any subject ties, and they found that only a handful Trump’s were. Biden will face the same imaginable, and sometimes just by read- of them passed with only one party’s sup- court battles and in the end may not be ing lengthy documents, to prevent a bill port. Because of that, nearly all of them able to accomplish much by that method. from coming to a vote until its support- ended up as compromise measures that One thing he can do is revoke Trump’s or- ers gave up and withdrew it or until 60 didn’t fully satisfy anybody. Even when ders, and it’s pretty clear he’ll do that for Senators voted to cut off debate. In recent single-party bills do pass, they often don’t many of them as soon as he takes office. years though, nobody actually has had to fully reflect the ideological stance of the However, the Trump Administration still do this; they just have to demonstrate that party as a whole, because not all of the has the ability to make some changes there aren’t 60 votes for the bill. Oddly party’s members actually support that stick by issuing “interim rules,” and vari- enough, the Dems could eliminate the fili- ideology. ObamaCare is a great example: ous federal agencies have been putting on buster rule permanently with a simple 51- The Democrats jammed it through by a full court press to finalize as many new vote majority (if they get one) by means means of a rather underhanded “budget regulations as possible before January 20. of some parliamentary sleight-of-hand, reconciliation” process with no Repub- Under the Administrative Procedure Act, and unless they do that, they’ll have to lican votes in the Senate, but even then a federal agency can make a “finding” that 3 it needs to issue final regulations without as Personal Care) from their Medicaid features than at least some of the private the usual 30- or 60-day public comment State Plans, or to limit the scope of ser- plans and the competition would force in- period for some allegedly “emergency” vices (such as by changing the eligibility surance companies to make more attrac- reason such as protecting health or safety. rules for Personal Care) without losing tive, less expensive, offerings. The prob- The agency must accept public comment the extra Medicaid funds. This interpreta- lem with this is that a public option was after the rule takes effect and theoretically tion directly contradicts what’s in the law, part of the original ACA proposal, and it should withdraw or change the rule in re- and is therefore not valid, but it will take was removed because Obama couldn’t sponse, but government agencies are re- a lawsuit to establish that. It was not clear even get a majority of Democrats to sup- ally good at ignoring adverse public com- exactly when this interim rule was to start, port it when both houses of Congress were ments—and equally good at making up and it may already be in effect. Several controlled by that party. It’s very unlikely bogus “emergency” excuses (for example, Congressional Republicans were opposed to pass in 2021. the FDA indefinitely delayed implement- to the MOE requirement and it’s not at all The Disability Integration Act (DIA) is ing its rule banning the use of electronic certain that the new Congress would use still under consideration, though it will shock devices for punishing people with its review power to revoke this rule. have to be reintroduced in both hous- disabilities at the infamous Rotenberg In early November, the US Supreme Court es of Congress in 2021. We’ll tell you Center on the grounds that the psychia- heard oral arguments on California v Tex- again, as we did when it was first intro- trists and psychologists who would have as, in the latest attempt by right-wingers duced (AccessAbility Summer 2016): It’s to approve new behavior plans for those to get ObamaCare (the Affordable Care a great idea that will probably never be folks would be too busy treating pandem- Act, ACA) declared unconstitutional. The enacted—and if it is enacted, it will not ic patients; see AccessAbility Summer case is only marginally relevant to people survive the inevitable court challenges 2020). Once a final rule is issued,- Con with disabilities, because relatively few that will follow. There are at least two rea- gress has a pretty short window of time in of them both have no employer-based sons why: It requires states to massively which it can exercise its “review” power health insurance and are not eligible for increase the availability of affordable and and revoke it—which the incoming Re- Medicare and/or Medicaid. (Much has accessible housing without giving them publican Congress did in early 2017 with been said about what will happen to cov- any money to do it. And it requires states some of the last regulations issued by the erage for pre-existing conditions if the to massively increase the amount of com- Obama Administration. But the new 2021 Supremes strike down the law, but most munity-based support services available Senate may not be able to muster a major- of that is hopelessly wrong, as we explain to people with disabilities without giving ity to revoke any Trump regulations. on page 5.) Although the Court now has them any more money to do it. The lat- So what does all this mean specifically for a 6-3 right-wing majority with the ap- ter problem would seem solvable because people with disabilities? pointment of Amy Barrett to replace the states can always draw down more Med- There’s a formal federal “national public late Justice Ginsburg, most of the Justices icaid money to provide more of the same health emergency” in effect for the - pan seemed to have serious problems with the kinds of services they provide through demic. Under the terms of the March 2020 suit. They aggressively questioned the that program now, but that’s an illusion. Families First Coronavirus Response Act, plaintiffs’ lawyers about claims that any of The DIA deliberately avoids changing states that accept temporarily increased the plaintiffs were actually injured by the anything about Medicaid, which means Medicaid matching funds to address CO- ACA in a way that would give them stand- that the federal Centers for Medicare and VID-19 cannot cut any Medicaid services ing to sue, and about the notion that be- Medicaid Services (CMS) will never issue or tighten any eligibility rules for the du- cause Congress removed the enforcement new regulations based on the DIA to fix ration of the emergency—the “mainte- provision requiring payment of a tax pen- existing stumbling blocks to expanding nance of effort” (MOE) requirement. The alty for people who did not buy individual fully integrated services in the ways that emergency was extended through Inaugu- health insurance in 2017 (the “individual DIA requires (for example, by excluding ration Day—January 20, 2021—in Octo- mandate”), the entire rest of the law was Medicaid funds for group homes with ber. The MOE is allegedly the only thing unconstitutional. It now looks like the more than four residents, or by mandating keeping New York State from putting law will survive when the Supremes issue that those residents can effectively control into effect the drastic changes to eligibil- their decision sometime before June 2021. what goes on in those houses, or by al- ity for personal care and CDPA services If it doesn’t, though, Biden won’t have the lowing Medicaid funds to be used to pay that were passed in the 2020-21 budget in votes in Congress to enact a thoroughgo- personal attendants to provide child care April. (In fact, the state must get federal ing replacement for it. He’s also proposed or pet care). If the Medicaid regulations approval to make some of these changes, to add a “public option” to ObamaCare as aren’t changed in those ways, states would and as best we can tell, the state Depart- an improvement. This would likely take have to come up with 100% of the money ment of Health has not yet applied for it.) the form of allowing people to buy into to pay for those services. But even if they But in late October CMS announced that some form of Medicare plan on the public are, states would still face massive spend- it would issue an interim rule reinterpret- exchanges in the same way they can pur- ing increases in order to comply, and it is ing the MOE requirement to allow states chase private plans now. The idea’s sup- extremely unlikely that the increasingly to drop optional Medicaid services (such porters believe the plan could have better right-wing federal courts would override 4 states’ sovereign power to set their own way, it’s likely that this time around nobody ance (as opposed to regulations), and budgets. Right-wing judges don’t like in Congress is going to be bamboozled into some judges are developing an appetite unfunded mandates, and the US Supreme believing that DIA will be a “safe” pat on for devouring regulations themselves if Court specifically doesn’t like the federal the head for people with disabilities if it they don’t hew very closely to the letter of government to threaten to cut off Medic- actually gets enacted. In 2021, even if the the laws that authorize them. That makes aid funding for states that don’t want to Dems get control of the Senate, I predict logical sense; why should judges have to expand services—which is why the man- that DIA advocates will not get the same enforce laws whose authors didn’t care datory Medicaid expansion that was part warm bipartisan reception they got in previ- about making them stick? Unfortunately of the ACA was declared unconstitutional ous years, because if the bill passed, Biden too many politicians try to make them- in the same 2012 decision, NFIB v Sebel- might actually sign it—and few legislators selves look good to ordinary people while ius, that saved the rest of the law by call- really want that to happen. avoiding angering the rich folks who pay ing the “individual mandate” a tax. Don’t get me wrong. I would love for a to elect them, and they deliberately write vague laws that sound nice but have no Up to now, the DIA has seemed to have fair- bill that actually accomplishes what DIA teeth unless they are added by the occa- ly strong bipartisan support in both houses purports to do to be enacted. But that’s sional bureaucrat who actually cares about of Congress. But that’s only because up to a fantasy. Much more than that, I would the issues. If we had to depend solely on now, nobody believed the law would ever love a more modest bill that does what is elected officials to make change in this really pass, or that if it did, that President really doable to be passed, and I would country, very little would ever change. Trump would sign it. We’ve seen it time love the advocates to work on that instead and time again—elected officials say one of this unrealizable dream. In any event, the COVID-19 pandemic thing when they’re only grandstanding for Trump’s anti-poor-people CMS admin- and its economic effects are going to public approval, but they say something istrator Seema Verna will most likely be dominate the activities of federal and state else when they’re actually in a position to departing. That provides some hope that governments in 2021, and will likely lin- make a law. And when it comes to disabil- there will be an end to her efforts to im- ger into the election year of 2022 even if ity issues, legislators have a long history of pose nonsensical work requirements on effective vaccines start to become widely figuratively patting us on the head so as to Medicaid and provide maximum flexibil- available, as predicted, by the middle of appear compassionate in public, and then ig- ity to state governments to cut services. next year. The disease hits people with noring us later. This goes at least as far back Medicaid is a health insurance program disabilities harder than nondisabled peo- as passage of the Americans with Disabili- that is overwhelmingly used by people ple, and there’s mounting evidence that it ties Act, after which No Pity author Daniel who can’t get decent jobs; lots of them can actually create permanent cognitive, Shapiro wondered, in 1993, what was going have jobs, often two or three part-time mental health and physical disabilities in to happen when a bunch of politicians who jobs, none of which provide health insur- some people who never had any before. thought they were just “doing something ance—which forces them to rely on ex- So efforts focused on ending the- pan nice for the handicapped” woke up to realize tremely expensive taxpayer-funded hospi- demic and helping people recover from its they’d actually given them enforceable civil tal emergency rooms or indigent service financially and socially destructive harms rights. (One thing that did happen was re- pools for what little medical care they can can quite reasonably be considered major peated attempts to remove the ability of peo- get. If the Obama Administration provid- benefits for disabled people. It’s just hard ple with disabilities to sue businesses that ed a clue to what Biden will do, then we to see right now how we will get much didn’t comply with the law; another thing might get a much better CMS. But even more than that out of the only modestly was repeated Supreme Court narrowing of Obama’s CMS, which issued the ground- changed political landscape. the law’s employment discrimination provi- breaking Home and Community Based Services regulations that emphasize inte- sions, though some of those were corrected What Pre-Exists What by the 2008 ADA Amendments Act; a third grated services, declined to fully enforce thing was the rise of a permanent and ef- those regulations in negotiations over As mentioned elsewhere (see page 3) we fective organized opposition to community state Medicaid plans. are awaiting a Supreme Court decision integration for people with developmental Similarly, Obama’s Justice Department on the fate of the Affordable Care Act disabilities.) It’s true that for nearly the past made an effort to strongly defend the civil (ObamaCare). Most analysts now believe two years the DIA was actually being held rights of people with disabilities, issuing the Supremes will, at most, strike down up in the House Energy & Commerce Com- guidance to states that warned them that the individual mandate without invalidat- mittee by its chair, Democrat Frank Pallone failure to maximize community integra- ing the rest of the law. That will do no of NJ. He refused to say why, but it might be tion—even if permitted by federal Med- harm because it hasn’t been enforced since because the segregationist bigots at “Voice icaid law—could result in legal action. 2017. But the case, and the recent election of the Retarded” who’ve been campaigning We can hope for a similarly aggressive campaign, raised the question of exactly against it, and their financial backers in the approach from the Biden Administration. how bad it would be if the law went away. public employee unions, got to him. Or it But during the Trump years some conser- Although we at STIC operate programs might be because he understands the bill’s vative federal courts have issued opinions to help people enroll in Medicaid or pur- fundamental flaws as described here. Either reducing the value of mere agency guid- chase private insurance through the state’s 5 ObamaCare exchange, “New York State The recent propaganda around Obam- ease also. But none of these exclusions of Health,” and would likely lose those aCare concerning pre-existing conditions are permanent; at worst, they impose a contracts if the law was declared uncon- has been pretty much completely false on 6-month delay on when your plan will be- stitutional, we at AccessAbility have to be both sides. The Republicans claim they gin to cover those conditions. honest and tell you that, really, it wouldn’t support the law’s protection against deny- “Straight” Medicaid does not have any be as bad as some people have claimed. ing insurance to people with pre-existing pre-existing exclusions for typical medi- I can hear you saying, “OMG, he’s gonna conditions, but that’s a lie. Congressional cal services, such as doctor visits, sur- talk about insurance again? BOR-ING!!” Republicans tried to repeal the entire law, gery, lab work, therapies, or prescrip- You can skip this if you want. But the advo- including that provision, dozens of times, tions. However, many of the services that cates among you really need to understand and neither they nor Trump have ever states offer are chosen by the states, which what the truth is here. Spewing false pro- presented an alternative bill that does the may or may not also have waivers and/ paganda doesn’t enhance anyone’s stand- same thing. Several Republican state gov- or community-based services programs ing with legislators, and advocates need to ernors also signed onto the lawsuit now that offer additional, specialized services ensure that their limited time and resources before the Supremes, which argues that only to people with various types of dis- are devoted to the most pressing problems, the entire law is unconstitutional. abilities. This sort of variation isn’t what instead of sweating the small stuff. Meanwhile the Democrats have been most people mean by “pre-existing condi- ObamaCare really has very little relevance claiming that if ObamaCare goes away, tions.” It’s true that ObamaCare provided to the most important issues faced by most over 100 million people will lose pre- a way for states to expand Medicaid, with Americans with significant disabilities. existing condition protections. That’s also its prohibition on pre-existing condition This is true because most of them actually a lie. They seem to be conflating Obam- exclusions, to nondisabled people with have medical insurance. A relatively small aCare’s provisions with a published esti- somewhat higher incomes, by providing number of them have it from their employ- mate that about 100 million people have a higher (though steadily declining) fed- ers, but lots more are unemployed and/ what insurance companies would call eral match for serving them, and if the law or elderly, so they have Medicaid and/or “pre-existing conditions.” (There are sev- goes away that specific program would Medicare. It’s true that many other states’ eral such estimates and they’re all over the too. But states have been able to expand Medicaid programs aren’t nearly as gen- map from about 50 million to more than income eligibility by means of Medicaid erous and comprehensive as New York’s, 150 million.) But all ObamaCare does is waivers for a long time (New York did but the most important ObamaCare Med- say that when private insurance compa- it well before ObamaCare was enacted), icaid provision is aimed at nondisabled nies sell individual plans to people on the though without the temporary increased poor people, not people with significant insurance exchanges, they can’t deny cov- match, so states that really want to contin- disabilities. This is the so-called Medicaid erage, or impose different pricing, for peo- ue coverage for those people would have expansion, which provided a time-limited ple with those conditions. Over the years a way to do it even without ObamaCare. extra-large federal funding match to states estimates of the total number of people re- Probably not all states would do that, but that increased their Medicaid income eli- ceiving insurance through ObamaCare ex- some would, and that means that a lot gibility thresholds to include more of the changes have ranged between roughly 16 fewer than the 12 million or so people “working poor”—people who only rarely million and 22 million. But most of them who got Medicaid pre-existing condition have employer-based health insurance. are people who got Medicaid through the coverage through the law would actually Certainly some of these people do have exchanges. In 2019, only about 9 million end up losing it. disabilities, but it’s a small percentage. people purchased private individual insur- For just about everybody else—nearly ance plans through ObamaCare, and those Some advocates would call any “pre-ex- all of whom get health insurance through are the only people who would definitely isting condition” a disability, and some of their employers—it has been illegal for lose that protection if ObamaCare is de- them are—or will be if they cause enough insurance plans to permanently exclude clared unconstitutional. degeneration—but most of them are just di- coverage for pre-existing conditions for agnoses, such as diabetes or heart disease or There are no pre-existing condition exclu- many years—long before ObamaCare a history of cancer. Just because you have sions in “original” (Parts A & B fee-for- was even thought of. The federal Em- them doesn’t mean they’re affecting your service) Medicare or Medicare Advantage ployee Retirement Security Income Act ability to function in any significant way. All (managed care) plans. Some Medicare (ERISA) of 1974 set the maximum term legitimate definitions of “disability” (there supplemental (“Medigap”) plans may of exclusion of coverage for pre-existing are at least three in common use) require deny coverage for pre-existing conditions conditions in most employer-sponsored significant impairment of a person’s ability if you sign up for them outside the usual health insurance at 12 months for most to do one or more important life activities. open enrollment period. However, lots of employees (those who don’t enroll im- Most pre-existing conditions, in medical people with such conditions are eligible mediately when they are hired can face insurance terms, don’t fit those definitions. for Medicare Special Needs Medicare an exclusion of up to 18 months). ERISA And as we said, most of the people who Advantage plans, which have no limited defines a pre-existing condition as one have ones that are actually disabilities al- enrollment period. There are a few limita- that was diagnosed or treated within a ready have insurance. tions on people with end-stage renal dis- six-month “look-back window” prior to 6 when you were first eligible to enroll in existing conditions for people who do, were forced to buy health insurance in or- the plan. For example, if you had a heart because that problem was already largely der to keep individual plan rates down for attack two years ago and haven’t needed gone. The big roadblock was private in- people with pre-existing conditions. But any services or medication related to your surance companies’ unwillingness to of- the mandate has been gone for over three heart condition for six months, they can’t fer insurance plans directly to individuals, years and rates really haven’t increased delay coverage for it. ERISA’s look-back or at least, not without huge unaffordable any faster for those plans than for employ- window for long-term disability coverage premiums. ObamaCare mostly created er-based plans. It’s true that the federal is only 90 days. incentives for those companies to offer government has been subsidizing those affordable plans, minimum quality - stan Then came HIPAA. Most people think rates to some extent, and those subsidies dards for the plans, and informative online that the Health insurance Portability and would go away with the law’s demise, but “exchanges” in which they could be sold. Privacy Act (HIPAA), passed in 1996, it’s possible that the insurance companies It was only natural that while it was doing only requires organizations to get your might want to stay in this lucrative mar- this it would also apply the prohibitions permission to share your health informa- ket, especially since the law’s quality/cov- on pre-existing condition exclusions that tion. But the “portability” part protects erage requirements for those plans would many state and federal laws had already also be gone. We might find that if the people against repeating pre-existing con- applied to employer-based plans to the Supremes wipe out the law, most people dition exclusions. Under HIPAA if you new individual plans. leave an employer that provided health will still be able to buy some minimally insurance after working there for at least Now, it’s also true that ObamaCare re- acceptable private plans. quired employers with 50 or more full- a year, and you take a new job that also Of course, it’s hard to explain all this in provides health insurance within 63 days, time employees to provide at least a mini- mum level of health insurance to those a 30-second political campaign ad. But it there can be no delay in covering your should now be clear that Democrats have pre-existing conditions in your new job. workers. The law also defined “full-time” as at least 30 hours a week, which led a been just as guilty of dishonesty as Re- Note that group insurance plans like those lot of companies simply to cut everybody publicans when it comes to ObamaCare purchased by employers can charge higher back to 29 hours a week, and hire more and pre-existing conditions. Lots of insur- rates if large numbers of people in the plan part-time workers, to avoid having to pro- ance companies hire celebrities that peo- file a lot of claims for coverage, but that’s a vide health insurance. Truly there weren’t ple (especially older people) seem to trust cost borne by the employer, not the insured many companies of that size that didn’t to sell health insurance on TV. The idea person, and it’s not necessarily based on offer health insurance before ObamaCare, is that somebody like William Shallert or “pre-existing” conditions; it’s just as much and it’s doubtful that this provision pro- Tom Selleck or (for some strange reason) about people whose medical needs increase duced a meaningful benefit. Joe Namath is a more trustworthy “brand” after they enroll in the plan. But what about those individual plans for than Amica or Excellus or Humana. Some Meanwhile, between 1974 and the pas- people who can’t get insurance on the people seem to consider “Democrat” and sage of ObamaCare in 2010, many states job? Aren’t they a great benefit of the law? “Republican” to be trustworthy brands as enacted laws that further limited or com- Yes, they are. But perhaps the law’s great- well. The real lesson here is that if people pletely outlawed pre-existing condition est benefit has been educational. That is, rely on familiar brands or spokespeople exclusions in employer-based health in- insurance companies have learned that as substitutes for actually learning the surance. So the problem that ObamaCare there really is a market for private insur- facts, they are likely to be deceived. And was primarily designed to solve was how ance plans. When the law was passed its as citizens we have a responsibility to un- to get insurance to people who don’t have supporters insisted that the “individual derstand the facts before we vote on the it through their jobs, not how to cover pre- mandate” be part of it; healthy people people who make the decisions. COURTS WATCH

Waskul v. Washtenaw County Commu- because laws run into trouble in the courts the CDPA program by cutting its admin- nity: Ambiguity is … Well … Ambigu- when they don’t. istrative rates to a level well below actual ous ... This case is about a Michigan self-deter- cost and by pushing managed care plans The Merriam-Webster dictionary defines mination program for people with devel- to force personal attendant wages down to “ambiguous” this way: “doubtful or un- opmental disabilities, and was decided the bare minimum. certain especially from obscurity or indis- in the 6th Federal Circuit Court of Ap- Some of you know about “self-determi- tinctness; inexplicable; capable of being peals, but it may be very significant for nation” disability service programs. For understood in two or more possible senses New Yorkers who are contending with those who don’t: “Self determination” or ways.” We’re defining our terms here Governor Cuomo’s attempts to destroy means the person who gets the services 7 also gets to make some decisions about program. People familiar with OPWDD er wages, and instead his mother is paying how those services are provided. It’s the tend to think of “habilitation” as separate out-of-pocket for some of his services and same as “consumer direction,” in a gen- from things like in-home attendant servic- supports, “causing her to fall behind on her eral sense. There are different kinds of es, supported employment, pre-vocational taxes and putting her at risk of foreclosure.” self-determination programs though and services, and respite services, but those Federal Medicaid law has several provi- the specifics of each matter for this case. are all New York distinctions; at the feder- sions that establish states’ responsibili- The programs break down into those that al level they’re all “habilitation” services ties to ensure their Medicaid programs give service recipients “employer author- and states don’t have to separate them out are adequate to meet people’s needs and ity” and/or “budget authority.” Employer in their waiver plans if they don’t choose that home and community-based service authority allows the person to hire, super- to. We don’t really know if Michigan’s programs like Self Determination and vise, and fire the people who serve them. Self Determination waiver provides ser- CDPA comply with at least minimum Budget authority lets the person decide vices similar to what we call CDPA, and standards. There have been many federal how to allocate a personal pot of money that’s one of the problems with deciding lawsuits over several decades to try to en- to purchase different types of services how important this case is to us. force these rules in a meaningful way. The and/or hire people to provide them. Some The problem began in Michigan when resulting case law has established a few of these programs are available only the state changed its self-determination things: First, in at least some kinds of cas- through Medicaid waivers or so-called funding methodology. Each person’s in- es, Medicaid recipients don’t even have “State Plan” home and community-based dividual pot of money, or “budget,” was legal “standing” to sue states over these service programs; others are available determined by multiplying her number of issues because the law doesn’t provide a through Medicaid fee-for-service or man- hours of approved services and supports “private right of action” to them. Second, aged care. Michigan does some things dif- by a set rate. The person would then de- the US Supreme Court has been pushing ferently than New York, so we have to be cide how to allocate those funds for dif- the idea that courts aren’t “competent” to careful in determining how much of this ferent services and workers. However, decide technical issues about provisions Michigan case really applies here. when it came to charging costs against of Medicaid law that it calls “ambiguous.” The Consumer Directed Personal Assis- those budgets, the state used to break And third, the Supremes have also said tance program (CDPA) in New York serves the costs down into separately-billable that in most cases, the only way to enforce people with a broad variety of physical, categories—one for wages paid to work- Medicaid law is to have the federal De- cognitive, and developmental disabilities. ers or fees paid to provider agencies, and partment of Health and Human Services It only provides employer authority, and another for things like workers compen- threaten to cut off the money for states it’s funded by both managed care plans sation insurance, training, and transporta- that don’t comply, and if they won’t do and fee-for-service Medicaid. It also only tion. Only the first category, wages/fees, that, people can sue them. We’ve covered covers personal assistance services (atten- was charged to their budgets. But then the these issues many times over the years. dants to help people with certain types of state decided to incorporate all of those See AccessAbility Spring 2015 and Sum- self-care and related tasks at home and in fees into one charge and bill all of it to mer 2015 for Armstrong v Exceptional community locations). The Michigan case people’s budgets. They didn’t increase the Child Care Center; there are many other is about a Medicaid managed care waiver rate used to calculate the budgets though, articles referenced in those. program that provides both employer and so people either had to cut the wages/rates So what’s different about this case? The budget authority and covers a range of they paid for services, or cut the number Sixth Circuit thinks it’s found a way services that fall under the general catego- of hours of service they purchased. They around the standing and ambiguity prob- ry of “habilitation,” only for people with needed all of their hours of service, so a lems, and it supported the idea that be- developmental disabilities. It’s similar to lot of people cut wages for workers. A lot ing forced to be “homebound” because New York’s OPWDD Self Determination of workers quit because they couldn’t live you can’t get enough services is a form on those wages, and people had difficulty of unnecessary institutionalization that replacing them for the same reason. violates the Americans with Disabilities Some of these people’s stories are pretty Act (ADA). Why are we cautious about shocking. Derek Waskul, for example, is it? Because it’s quite likely that this is autistic, has “severe cognitive impairment,” just another example of a liberal federal and needs 24/7 supports. He couldn’t find judge trying to expand the law in ways enough workers at the reduced wage and that conservative Supreme Court judges resorted to hiring his father, who is only won’t approve—and maybe even have available on weekends. He’s been forced to already disapproved. The distinctions stay home three days a week; as a result he’s are technical and involve a lot of wad- developed “depression, worsening scolio- ing through stacks of earlier decisions, sis, and anger management issues.” Another which we have neither the time nor the plaintiff was “forced to hire his 77-year-old competence to do. But we’ll try to out- ailing grandfather”; a third opted not to low- line them for you. 8 This suit was filed in federal district self) describing “promptness” and “equal tiffs don’t have to actually experience court, and the judge there dismissed the assistance” are clear and not ambiguous. a harm in order to sue, and get relief, if plaintiffs’ claims for various reasons. The Finally, the law and regulations use “man- such harm is grave enough is well-estab- Circuit Court looked at that decision and datory” language such as the state “shall” lished in case law; it doesn’t depend on found several missing pieces in the dis- and the Medicaid plan “must,” instead the language of any specific statute, and trict judge’s chains of logic and sent the of “may” or “should.” Whether the Su- we doubt the dissenting judge’s remarks case back to be re-decided. Yet the Circuit premes buy this argument might depend on this point would hold any water. (The Court left open several avenues for the on whether the plaintiffs specifically said same dissenting judge also argued that the district judge to rule against the plaintiffs there’s a problem with how promptly they Medicaid regulations that the deciding again, as long as s/he does so in a way that are able to receive services. Very conser- judge thought were clear are too ambigu- dots all the I’s and crosses all the T’s, and vative “textually oriented” judges don’t ous for courts to competently interpret, that may very well happen. like arguments along the lines of, “Well, if without explaining what he found con- But in his opinion the circuit judge made they can’t get the service at all, then they fusing; he apparently believes that previ- some interesting points that leave open didn’t get it promptly, did they?” They are ous cases that cite this problem should be the possibility that the case could serve as sticklers for exact language. Ditto with interpreted to mean that any and all regu- a precedent to support challenges to New regard to specific complaints plaintiffs lations are too ambiguous for judges to York State’s actions. bring; judges are not supposed to provide understand. However, the fact that a rigid relief for harms that the plaintiffs didn’t right-wing textually-oriented judge may Previous Supreme Court decisions found say they suffered. be incompetent to understand a regula- that even if a law doesn’t explicitly say tion is neither surprising nor proof that that an individual can sue the government So much for Medicaid law. The plain- another judge with a more balanced per- for failing to provide a service, there are tiffs also alleged violations of the ADA. spective couldn’t understand it.) ways to determine whether specific pro- The ADA, as interpreted by the Supreme visions of the law actually confer rights Court’s Olmstead decision, calls institu- The second argument, though, may be dif- to a person that she can enforce by suing: tionalization of people who don’t objec- ferent. We absolutely agree with the plain- Did Congress in writing the law intend tively need it, and also don’t want it, il- tiffs’ logic. The Medicaid regulations for the provision to benefit the plaintiff? Are legal discrimination. The plaintiffs in this programs like Michigan’s define “char- those rights “so ‘vague and amorphous’ case make two claims about that: First, if acteristics of an institution” as those that that … enforcement would strain judicial they can’t get all of the services they need, isolate individuals and limit their ability competence”? And does the law “unam- their health will deteriorate to the point to interact with nondisabled people to the biguously” impose a mandatory obliga- that they won’t be able to continue to live maximum extent possible. But we an- tion on the state? in their own homes, so they are at risk of ticipate right-wing judges writing “Those being placed in institutions. Second, even very regulations describe a person’s own When people have been unable to get if they can maintain their health, if they home as a non-institutional location. How Medicaid services due to faulty payment must spend most of their time sitting at can one federal law—the ADA— outlaw methodologies, they have tried to sue for home, they will be effectively institution- that which another federal law (Medicaid) violations of the Medicaid law’s provi- alized there. permits or even encourages?” sion that state Medicaid programs must “assure that payments are … sufficient to The first argument is easy and straight- There are also significant differences -be enlist enough providers so that care and forward, and at least one plaintiff brought tween the changes to Michigan’s funding services are available under the plan at evidence that his health was already methodology and New York’s proposed least to the extent that such care and ser- deteriorating. A very right-wing judge changes to paying for CDPA services. vices are available to the general popula- filed a dissent in this case. Among other In Michigan the funding methodology tion in the geographic area.” As the circuit things, he said that neither the ADA nor was changed by combining two separate judge says, that provision doesn’t confer Olmstead says anything about “risk of billing processes into one. In New York a right on Medicaid recipients, because institutionalization”; they only discuss the proposal is to separate a single bill- it doesn’t even mention recipients. It’s a actual institutionalization, so a mere risk ing process into two—one for wages and provision that applies only to the behav- is not grounds for a lawsuit under the benefits for CDPA workers who assist ior of state Medicaid programs. BUT, ADA. Confusingly, he then said that if people with disabilities with self-care and other provisions require states to ensure the plaintiffs want to allege that the harm related tasks, and another for the Fiscal that all medically necessary assistance of institutionalization is so profound and Intermediary (FI) service, which assists be provided to “all eligible individuals” permanent that it wouldn’t make sense to people with disabilities to manage their with reasonable promptness, and such wait until it happens to them before they workers. It may be possible to make the assistance “to any individual” who is eli- sue, then they could request a temporary argument that the NY change will make it gible must be equal to the assistance that injunction against the new methodol- impossible for people to receive services is available to other Medicaid recipients. ogy—but the plaintiffs did request such promptly, because FI agencies will be The judge also argued that the regulations an injunction, which the district court did extremely understaffed if that rate is cut. (but perhaps importantly, not the law it- not grant. The general concept that plain- The “home as an institution” argument is 9 a tougher sell for a CDPA program than and the real purpose of habilitation ser- them. OCR issued a bulletin informing it is for a habilitation program. Although vices is to get people so well integrated states that these kinds of policies were il- both programs assist people both at home into the community that the ordinary folks legal under the Americans with Disabili- and in community locations, the primary they encounter in the places they go will ties Act, the federal Rehabilitation Act, purpose of habilitation services is to in- befriend them and help them, especially in and ObamaCare. Later in the spring the tegrate people into the community, while places where they work or volunteer, with agency announced settlements of three the primary purpose of CDPA is to pro- a side effect of reducing the need for paid of the complaints, including Alabama, vide in-home attendant services. support.) The district judge didn’t con- whose policy specifically denies ventila- This case might be a better fit for chal- sider whether those claims were true; he tors to people with developmental disabil- lenging the use of Medicaid managed care dismissed the case before getting to that ities, and the states rescinded the policies. to pay for community-based services. For point. The circuit judge made it clear that There’s been no news on the rest of the about a year now most of the private in- it might be true that such actions could complaints, including DRNY’s. So on surance companies (managed care orga- have solved the plaintiff’s problems. If the October 7, DRNY joined the anti-assist- nizations, or MCOs) that provide Medic- district judge agrees, he can dismiss the ed suicide group Not Dead Yet and sev- aid managed care plans in NY have been case again and the plaintiffs might have no eral individuals with disabilities in filing a trying to pressure CDPA FI programs to further recourse. A judge considering the lawsuit against the state in federal district sign contracts with much lower rates that New York situation might say that CDPA court. The plaintiffs’ complaint is detailed, would force them to cut wages for atten- consumers could use “traditional” homec- straightforward, and very well argued. dants down to the state minimum. Many are agencies to solve their staff shortage It should be a slam-dunk. We’ll let you CDPA attendants have been working with problems. It’s not true; generally speak- know if they catch any rim. STIC and other FI agencies long enough ing, at least upstate, CDPA consumers to get several wage increases; if they were have better luck recruiting workers than cut back to minimum wage they would homecare agencies do. Cutting CDPA More Police Violence quit, and many would immediately get wages would make recruitment just as After we published our last story on this better-paying jobs in the fast-food indus- hard in CDPA as it already is for tradition- topic, it was revealed that the Roches- try or elsewhere. The risk of institutional- al agencies, but it wouldn’t increase the ter NY police had killed Daniel Prude in ization if services are reduced is more im- likelihood of people getting the services March of this year. Prude was 41 years minent for most CDPA participants than they need. But plaintiffs in a New York old and black. He had a history of sui- it is for habilitation consumers, because suit would have to be armed with factual cidal ideation, apparent hallucinations the need for CDPA services is much more evidence to prove that point. and delusions, and paranoia, adding commonly related to physical health. So indeed, for many reasons, the question up to an obvious mental health disabil- However, the managed care plan provid- of whether this case can help us in New ity. On March 23, 2020, he went to his ers in Michigan are not private health York is, itself, ambiguous at best. brother’s home and was behaving er- insurance companies. They are regional ratically, at one point leaping head-first Prepaid Inpatient Health Plans (PIHPs), Not Dead Yet v Cuomo: Not Decided Yet down a flight of stairs. He was taken to public agencies that only exist to offer (sorry!) the hospital for a psychiatric evaluation those Medicaid services to people with and released. A few hours later he ran developmental disabilities. Although they As we reported previously (AccessAbil- away from his brother’s home, shedding receive capitated rates to serve individu- ity Summer 2020), New York State has his clothes, and his brother called 911 als, they don’t appear to have the same a set of guidelines for hospitals to follow to get some help for him. He was not discretion to apply downward pressure on in the event of a pandemic emergency armed and not behaving aggressively. wages that New York’s MCOs have. that call for taking ventilators away from Both police and paramedics arrived. A people with disabilities and giving them The defendants in the case pointed out cop pointed a taser at him and told him to allegedly more “healthy” people if they that the plaintiffs have several options to six times to lie down on the ground. show up at a hospital. Disability Rights improve their situations without suing. Prude did so, and he also put his hands New York (DRNY), the state’s federally- They can purchase services from agency behind his back and allowed the officer funded Protection & Advocacy agency for providers instead of recruiting and hiring to cuff him. He said “Yes, sir,” and he people with various types of disabilities, their own people, and they can also appeal also repeated “In Jesus Christ I pray. filed a complaint with the federal Depart- to get larger individual budgets. They may Amen,” and other things. A few minutes also be able to make more use of natural ment of Health and Human Services Of- later he became agitated, shouting “Give supports. (Most people reflexively think fice of Civil Rights (OCR) about this on me that gun!” According to the police that last bit means, “Oh, they have to make April 7. he began spitting at them, and accord- their families help them.” These plaintiffs Lots of other states had pandemic crisis ing to the Boston Globe this could be were having their families help them and policies that discriminated against people seen on the police body camera video. it wasn’t going so well. The definition of with disabilities in a variety of ways, and The police put a “spit hood” on his head “natural supports” is broader than that, OCR received complaints about many of and put a knee on his back and forced 10 his head down onto the pavement. He response to such situations. But the August the Associated Press reported that demanded that they remove the hood response ultimately failed and it may DOH surveys show that nursing facilities and tried to stand up but didn’t succeed. have been because the paramedics, who in the state had 13,000 more empty beds Eventually he stopped struggling, then should have been trained in defusing than expected this year—which was more he stopped breathing, and then he died. situations like this, did not take the lead than twice the number of nursing home COVID deaths reported by the state at The coroner’s autopsy report stated that when they arrived. People in these situ- that time. Some of those are due to family he died of “complications of asphyxia in ations can often be “talked down” by members pulling people out of these death the setting of physical restraint.” It also someone who knows how to do it. Even traps and others who wisely decided not said that “acute intoxication by phen- if physical restraint becomes necessary, to go in. But it’s quite likely that many of cyclidine, or PCP,” was a contributory there are well-understood safe ways them died in hospitals after being infected factor. Prude’s sister said that he had of doing it that don’t risk the person’s in those “homes.” smoked a joint soaked with PCP before life. Instead the police were allowed to going to his brother’s house. take over and they applied the knee-in- It’s also likely that there’s another expla- the-back, hand-on-the-head approach, nation for some of those empty beds. An internal investigation in April which is known to be dangerous (it’s On November 6 the Albany Times-Union cleared the police officers of any wrong- what killed Eric Garner and George reported that there has been a dramatic doing. These events were not publicly Floyd). In retrospect there doesn’t seem rise in deaths due to Alzheimers disease revealed until September 2, at a press to have been a need for police to be on and other forms of dementia, in New York conference that featured the body cam- the scene at all. era video. The news generated multiple and across the nation, in 2020. These protests over more than a week in Roch- As we also said last time: This is why deaths were 21.4% higher in NY and ester, most of which began peacefully people shout, “Defund the police!” 16.6% higher for the United States. It doesn’t mean abolish the police. It but were eventually marred by acts of Experts said that if this was because CO- means stop using them as first respond- vandalism. In response, the police used VID-19 itself, as a physical disease, was ers for people in crisis, and transfer the tear gas and pepper spray on the protest- contributing to earlier deaths of people ers. Then on September 4, seven police money we pay them for that to organiza- with dementia, the expected rise would be officers involved in the death were sus- tions and trained professionals who ac- more like 5%. There’s something else go- pended. New York Attorney General tually know how to help people without ing on. Letitia James announced she would hurting them. And it means reduce the size of police forces dramatically as a One thing would be that these people re- empanel a grand jury to investigate the ceived much less medical care in general events. Then Rochester’s Chief of Po- result, and with them, the size, wealth, and power of police unions that pay our due to the pandemic. Nursing homes, al- lice and two other high-ranking people ways short-staffed, lost a lot more work- in the department resigned. There has elected officials to perpetuate this insane approach to crisis intervention. ers due to the disease, and the amount of been little news since then. neglect of their residents skyrocketed as a As we reported last time (AccessAbility result. But some hospitals have also been Fall 2020), substance abuse is itself a Where are the Missing periodically overwhelmed with COVID disability and it is usually a type of self- Nursing Home cases and less able to provide prompt and medication by people who have some Residents? consistent care to other patients, including form of mental health or cognitive dis- those with dementia. ability, whether PTSD, psychiatric ill- On November 2, ABC News reported that And there’s another theory. People with ness, or brain injury, and are trying to by late October, more than 82,000 people these conditions seem to benefit from lots relieve pain, anxiety, fear or depression. in 41 states had died of COVID-19 in of personal attention. It slows their rate Prude’s brother sought medical help for nursing homes and other long-term care of deterioration. It’s quite likely that, de- him but the hospital released him within facilities. As of October 31, about 230,000 nied frequent attention from employees, a few hours, even though his action in Americans had died of the disease, total. and deprived of any visits from family diving down a flight of stairs was clear Various media have reported that the ratio and friends, many of them went downhill evidence that he presented an immediate is consistently about 40%. But this may be rapidly and died much sooner than they danger to himself and should have been a dramatic undercount. would have if there were no pandemic. grounds for holding onto him until they As we’ve reported, we know that many Keeping people with disabilities in plac- could get him some effective ongoing people in New York contracted the dis- es where there is forced togetherness supports and services. Having no other ease in nursing facilities but died in hos- among strangers and paid staff, instead way to help him, his brother called 911. pitals, a statistic that the state Department of helping them stay in their own homes The fact that paramedics came along of Health (DOH) still refuses to publish and avoid contact with people who are with the police may perhaps be an im- although most other states have done so a potential danger to them, is not good provement over the usual police-only from the beginning of the pandemic. In social policy. 11 The Incredible Shrinking Deficit According to TheCity.NYC, by early Oc- you it would actually be better for STIC favors at least cancelling a planned tax cut tober the Cuomo Administration had re- if that happened than if he continued to for people earning over $100,000. couped almost all of the projected state withhold promised payments indefinitely. Cuomo continues to oppose any tax in- budget deficit caused by the pandemic You see, the withholds are not really mere creases. He says large numbers of rich peo- economic depression. 20% cuts to our budget. We could at least ple will leave the state. That’s a commonly- Cuomo has claimed the plan for that, since we’d repeated and totally bogus claim. Accord- deficit was anywhere Cuomo continues know how much money ing to the Tax Policy Center, historically, between $6 billion and to oppose any tax we were going to get. when places that people find attractive for $20 billion at various They are actually cuts to other reasons raise taxes, only a tiny num- times since the spring. increases. He says our reimbursement for ber of wealthy people move. Between the TheCity used a figure of large numbers of money already spent. So end of World War II and 1963, the top mar- $14.5 billion to start with, rich people will it doesn’t help us at all ginal income tax rate in the US was 91%. which was the difference to cut our spending by leave the state. Very few people left the country to escape between Cuomo’s early, 20%. Suppose we were those rates. Much more recently, even af- pre-pandemic budget That’s a commonly- promised $100. If we ter Congress applied sharp limits on federal proposal, and his most actually spend $100, we deductions for state and local income taxes repeated and totally will only be reimbursed recent projected loss of in 2017—a feature allegedly much valued bogus claim. for $80. But if we only state revenue due to fed- by the rich—the number of “ultra-rich” spend $80, then we will eral cuts and decreased New York City dwellers continued to rise. be reimbursed for $64. If we spend only tax payments. But the budget passed in ear- Many of the wealthy people who do leave $64, we get back only $51.20. Get it? We ly April didn’t include everything Cuomo in these situations are near retirement and can’t escape, and we can’t plan. The only had originally wanted to spend, and that would pay less in taxes if they stayed any- brought the number down to $10 billion. way to stanch the bleeding is to shut down completely and spend nothing. way. And people who can afford to move Then the state came up with $3 billion in will also leave if the state lets its infrastruc- legal settlements, a lot of it from disputes If there’s a federal relief package, we would ture and services deteriorate due to spend- with banks related to the financial crisis. get the missing money repaid—or at least ing cuts. By some measures, New York City And Cuomo borrowed $4.5 billion to cov- some of it, depending on how big a pack- and its suburbs is the most attractive place er the delay in income tax payments be- age it is. But if that doesn’t happen, we’ll to live in the country; very few people with tween April and July. As of October 1 he’d be left holding the bag. This is insane and the means to live there are likely to move unnecessary. It’s just as easy to announce a gained another $2 billion by withholding to less desirable places as long as they can 20% cut and then if the feds come through, 20% of planned payments to local govern- continue to afford it. And if you make $2 restore the cut along with an extended peri- ments, schools, and not-for-profit organi- million a year and have that cut to $1.8 mil- od of time to spend it. However, the reason zations like STIC. That takes the number lion, you can certainly still afford it. down to $500 million. And he apparently Cuomo isn’t doing that is because an ac- Meanwhile, there are lots of rank-and-file still hasn’t spent all of the $5 billion he got tual proposed cut triggers a ten-day period Democrats in the state legislature calling for from the feds for pandemic aid either. in which the legislature gets to meet and propose an alternative, something Cuomo tax increases. The problem is with their lead- Which should theoretically leave the state doesn’t want to face. ership, which still seems mesmerized by the in pretty good shape. The problem with And that’s because the alternatives could completely undeserved reputation for god- that is there is a major economic depres- include stopping wasting money on pie-in- like wisdom that the governor amassed dur- sion under way. Lots of people are out of the-sky “economic development” schemes ing the early part of the pandemic, a perfor- work, and lots of people are spending less that Cuomo and his cronies like (you know, mance that has been deemed Emmy Award money, and that’s going to mean dramati- where they promise some business huge worthy, political stagecraft that it was. Even cally reduced sales and income tax rev- tax breaks in return for creating hundreds if they did go along with raising taxes, enue for the state, especially next spring. of new jobs, and then the business creates Cuomo would veto the measure. Although Without another federal bailout specifi- only a handful of jobs, if any, and still gets early returns suggested the Dems didn’t do cally aimed at state governments, the situ- the full huge tax break), ending subsidies for so well in either house of the legislature, af- ation will be very dire next year. the richest school districts, and increasing ter the absentee ballots were counted, they Cuomo’s budget director has said quite the state’s taxes on its wealthiest citizens. emerged with supermajorities in both the plainly that those 20% withholds on state Amazingly, even the right-wing fanatics at Assembly and the Senate. This means, they payments will turn into permanent cuts if the Citizens Budget Commission support can override any Cuomo veto. It remains an the feds don’t come through pretty soon. the first two ideas, and the only slightly less open question if they will have the guts to As bad as that would be, we have to tell obnoxious Empire Center for Public Policy do it though. 12 STIC NEWS

When Big Companies Come Through Big! By Rachel McHugh

and purge order to the operative in charge, As an organization, we at STIC would Xscapes but he has not responded or acknowledged like to express our deepest gratitude for this action. It will now be your responsi- the donation made from Joe Rusin at NY- Holiday Special bility to locate the high-level documents SEG. With so many people out of work stored in the facility and secure them. You and our ability to fundraise hampered by 20% off all Xscapes Bucks purchases will also be charged with initiating the self- the pandemic this donation couldn’t have until 1/1/2021 destruct sequence which will neutralize all come at a better time! It has allowed us to remaining intelligence and prevent it from Buy as much or as little as you need for keep providing critical unfunded services reaching enemy hands. For your protection your holiday gifts. to the people we serve in the disability during your mission, we have remotely se- community. So often it is easy to lay blame To Purchase cured your location. Unfortunately, it will for financial hardships on large companies Call (607) 760-3322 be impossible for you to exit unless you because we think they don’t have a heart. achieve your objective. It has been deter- In this case Mr. Rusin and NYSEG came email [email protected] mined that enemy assets will arrive at that together and recognized the valuable ser- Xscapes Bucks along with a holiday location in one hour. If you have not suc- vices we at STIC offer and chose to sup- certificate will be mailed to you or your cessfully retrieved all data, we will have no port us during this difficult time, showing family as requested. choice but to remotely detonate and eradi- us not only do they care about their com- cate the facility. Good luck agents. munity but they have a very big heart. To book your next escape room experience “We must find time to stop and thank visit: www.xscapes-stic.com the people who make a difference in our Xscapes is only offering private bookings lives.” – John F. Kennedy at this time. You pay one flat price for up to five players. Whether you have 2 players You Can’t Touch This: or 5 players, the cost is the same. The only exception here is the $100.00 paid at Advocacy in the Time time of booking only covers the hour-long of COVID games, which are Valley of the Kings and By Maria Dibble Exit Protocol. There will be an extra $25.00 due at time As many of you may know, STIC has al- Brand New 60-Minute of playing the game if you desire to play ways been a strong advocate for the rights the hour-and-a-half games Twilight Zone of people with disabilities, supporting and Escape Room or Wizard and Dragon. Once you have advocating for legislation that serves their Experience booked your time slot please call (607) 760- needs the best. By Todd Fedyshyn 3322 to let our team know which one of We’ve always had several methods of ad- our four games listed above you would like vocating. In the early days we used phone You have entered one of our high-level field to play for the time slot you have booked offices. This location maintains data and and letter-writing campaigns to legislators online. We also do take calls for last minute gathers intelligence on a large network of and other public officials, with the goal of foreign operative assets. Recently we have bookings and are happy to work your team educating them on our issues and hope- determined that this unit has been compro- into our schedule. fully garnering their support. mised and is at extreme risk of enemy pen- Please be mindful that masks must be worn Additionally, from our first days to the etration. We have issued a data extraction while visiting Xscapes. pre-COVID-19 present, we met face- 13 We Need Your Help By Sue Ruff, Advocacy Director STIC has been part of the State Systems area), knowing the emergency shelter My email is [email protected]. My Advocacy Network, or as abbreviated will be accessible if you are suddenly phone number at STIC is (607) 724- the SSAN, for many years. Systems Ad- homeless are just some of the issues 2111, extension 343. vocacy “happens” when a group of peo- and challenges we face. I won’t fill your email box. You can ple work together to change conditions People with disabilities may be very tell me what areas or issues touch you for people with disabilities. Disability patient but we have to be persistent. In advocates work in several areas and the and how you want to help. Sometimes this time of reduced opportunities for we send email action alerts, sometimes AccessAbility newsletter regularly de- us to gather, share, plan, educate, ad- we ask people to call policy makers scribes those areas and efforts. vocate, and work with those who can to explain how certain proposals will Finding housing that is both affordable help with housing, education, employ- and accessible, finding jobs and receiv- ment, health care, transportation, men- affect them, and sometimes we meet ing adequate wages, getting personal tal health services, personal assistance, (it can be digitally or by phone if you assistance in your own home, access- emergency preparedness, and many don’t have internet access; see below ing health care and mental health care, more areas, we NEED YOU! Is there for more ideas). Please join us by add- attending inclusive school classes, be- an area or issue that touches you deep- ing your voice, your passion, your con- ing able to travel from one place to an- ly? Please reach out to me and join our cerns, and a little of your time. Thank other (especially if you live in a rural group of systems advocates. you for helping. to-face with legislators, brought people bilities to the governor, I can’t fathom, but (meaning you) so they will hear the mes- with disabilities to Albany to share their they did. sage loud and clear. We vote and we want stories, and when necessary, held protest I promise I’m not rambling (well maybe xxxx. Of course STIC staff will all engage rallies or even took over a legislator’s of- just a little); this all relates to my point in activities to advocate for our priorities, fice. We rallied several times to try to save about advocacy. That was in March, and but sadly legislators are not as impressed CDPA from the draconian cuts the Gover- we missed precious opportunities to try to by our pleas; they really want to hear their nor wanted, up until March 15. have an impact on the 2020-21 budget, a constituents speak up in whatever venue. When COVID hit in March, we were not loss for most New Yorkers. We are going to have to be creative to get well prepared to continue our advocacy Come January of 2021, the Governor will our messages across, and I’m sure we will efforts for the budget and our many areas be releasing his 2021-22 budget that will come up with some new and unique strat- of concern. We were trying to arrange for go into effect on April 1. I know we won’t egies to reach them. our employees to work at home, with all be showing up in large numbers to speak I can’t emphasize enough that we will that involved, to ensure that the people we to or try to convince legislators to support do our part, but we absolutely need you serve were safe and had what they needed, our agenda, but we must find a way to and so on. But this was at a key point in reach them. to make our efforts successful. There is a the legislative session, the last two weeks, lot at stake this year. The state has a huge where all sorts of deals are cut, and you This is where we all come in. We’re liv- deficit in the many billions. The governor either get what you need or more often are ing in a time of social media (Facebook, will have the hatchet out to slash our bud- Twitter, etc.). We will ask people with thrown under the bus. gets, but we can’t survive without fund- disabilities and others to help us spread ing. There is only so much of the pie to go This year, we definitely felt the wheels the word on our issues and send Twitter, around, and we just want a fair slice. of the bus roll over us, with little regard Facebook, Instagram or other messages to for our interests (which are your interests) our politicians. This can work well if they People with disabilities and our issues are and concerns. Our legislature gave every- hear from enough of us. usually last to be considered and first to thing to Governor Cuomo that he asked be discarded. Help us to reverse this trend, for, throwing everyone under the bus If you’re like me and don’t use Twitter or Facebook or Instagram, an ordinary email and make the concerns of people with dis- because he was given almost unfettered abilities a top priority. Together, our num- power over the budget. He was handed is just as useful, and the old-fashioned bers can control the discussion if we all the power to change budgets or take other phone call or letter is even better. participate in some way. budgetary actions, with only a short peri- The other method we must adopt is od in which the legislature could respond. Zoom meetings with legislators. But for If you wish to join us in our advocacy Why the legislature did this to themselves, the meetings to be effective, sometimes efforts, Please call Sue Ruff at 724-2111 just handed over their governing responsi- we will need their constituents to join us Ext. 343. You won’t regret it. 14 SELF HELP

pointments, and you’ll need to pass an as- Accessible COVID Testing sessment screening. Depending on what kind of homecare you If you don’t have medical insurance you ment and possible testing appointment. have, your doctor may be able to order can get free COVID-19 tests from New Broome County has a mobile testing site in-home testing by your worker, who can York State or Broome County. that travels around the county. It’s only collect the specimen and deliver it to a lo- The state has drive-up testing at Bing- available to people who have possible cal lab for analysis and quick results. hamton University. Assuming you can symptoms of the disease. Most of the More information on finding test sites is drive or have someone drive you, there time the site will be on a fixed bus route here: https://coronavirus.health.ny.gov/ should be no issue with physical acces- so it should be easy to get to. If you can find-test-site-near-you sibility. We don’t know what provisions walk up to the site, that’s fine. If not, and have been made for sign-language in- you’re in a vehicle, they’ll come to you. terpreting, but you must get an appoint- Again, we have no information about NY Medicaid Removes ment before you can be tested. You must sign language or other forms of commu- Visit Limits also meet certain criteria in order to be nication accessibility. You’ll need an ap- approved for testing (such as having pointment here also; you can register on- In 2011 the first Medicaid Redesign Team possible symptoms or reason to believe line or call 211. Check them out at: www. imposed limits on the number of therapy you’ve been exposed to the virus). When gobroomecounty.com/hd/coronavirus visits (for physical, occupational, and you call for an appointment you can ask CVS, UHS, and Lourdes/Ascension also speech therapy) a person could have an- about interpreters or other accommoda- all have testing sites; you’ll most likely nually. This was always illegal under fed- tions. Call (888) 364-3065 for an assess- need insurance for them as well as ap- eral Medicaid law, which requires that all services available in the state’s Medicaid Plan that are deemed medically necessary by an appropriate authority must be pro- vided without arbitrary limits. After nearly ten years of advocacy the state’s Department of Health finally got the message. As of October 1, 2020, there are no more visit caps on these therapies. The number of visits covered will be determined by an assessment of medical necessity. Congratulations, Medicaid advocates for this big win!

STIC’s offices will be closed for the holidays

Thursday, December 24— Sunday, January 3

We will Reopen Monday, January 4, 2021 Happy Holidays to All!

15 Free Access Is Not Free Southern Tier Independence Center EXECUTIVE DIRECTOR ASSISTANT DIRECTOR STIC is a 501(c)(3) corporation, and governing documents, conflict-of-inter- Maria Dibble Jennifer Watson est policy, and financial statements are available to the public upon request. ACCESSIBILITY SERVICES: Frank Pennisi NHTD RESOURCE CENTER: ADA SERVICES: Frank Pennisi Ellen Rury Daena Scharfenstein Belynda Raminger Laura O’Hara If you would like to support STIC, please use this form. BEHAVIORAL CONSULTING: Pamela Lounsberry Kay Hogan Yasmin Van Veronica Wallen q Individual $5 q Contributing $100 Rachel Schwartz NY CONNECTS: Amy Friot Eileen O’Brien q Supporting $25 q Complimentary $______DEAF SERVICES: Heather Shaffer PEER COUNSELING: Jane Long q Patron $50 q Newsletter Subscription $10/year EC-FACE: Karen Lawrence Danny Cullen Robert Deemie Beth Kurkoski Leigh Tiesi Richard Farruggio Susan Link Stephanie Quick MAIL TO: Southern Tier Independence Center, Inc. EDUCATION SERVICES: PERSONAL ASSISTANCE SERVICES: HABILITATION SERVICES: Cathy Sostre Susan Hoyt Tess Savage 135 E. Frederick St. Daniel Schwartz Hannah Hickox Katina Ruffo Alicia Riehle Binghamton, NY 13904 Catherine McNulty Brittany Lynady PSYCHOTHERAPY: Katie Trainor-Leounis Lucretia Hesco Charlie Kramer Jane Long Jacquelyn Granato Name ______SA-FACE: Shannon Smith Tara Ayres HEALTH EXCHANGE NAVIGATORS: Address ______SELF DETERMINATION FI: Rhonda White Christy Sodan Joy Stalker City ______State ___ Zip______Michelle O’Hare Theresa Askew SUPPORTED EMPLOYMENT: Brian Roth Loretta Sayles Chad Eldred Kandi Stevens Michelle Dunda Phone ______Theresa Kircher Patricia Lanzo Rachel Barton Crystal Musshafen All donations are tax-deductible. Contributions ensure that STIC Brittany Pritchard Brittaney Carey SYSTEMS ADVOCACY: Susan Ruff can continue to promote and support the needs, abilities, and HOUSING SERVICES: concerns of people with disabilities. Your gift will be appropriately Michael Phillips Kim Kappler TBI RESOURCE CENTER: Belinda Turck Sara Brhel acknowledged. Please make checks payable to Southern Tier In- INTERPRETER SERVICES: dependence Center, Inc. Stacy Seachrist Ellen Rury Cortney Medovich Lori Wilmot Valerie Soderstrom MONEY FOLLOWS THE PERSON: THANK YOU! Krystal Pierre Millien Marcy Donahue TECHNOLOGY SERVICES: Michael Phillips Jessica Kendricks Sam Robinson