AccessAbility

In October, a bipartisan bill was introduced in the US House of Representatives to correct many of the Supreme Court's wrong-headed rulings on the Americans with Disabilities Act (ADA). The "ADA Restoration Act" was sponsored by then House Judiciary Committee Chairman James Sensenbrenner (R-WI) and then House Minority Whip Steny Hoyer (D-MD). Although it was never debated in the House, and there was no Senate version, it's possible that the new Congress will take it up.

The bill addresses the single biggest problem in the ADA: the idea that people must "qualify" as having a disability before they can be covered under the law.

The ADA says it's illegal to discriminate against people because they have a disability, or used to have a disability, or because somebody thinks, rightly or wrongly, that they have or had a disability. However, the Supreme Court has ignored the last two "prongs" of that definition and focused on whether claimants actually have a disability as defined in the ADA, that is, a "substantial impairment" to a person's ability to do one or more "major life activities". Thus, the Supremes found that people who have been fired or not hired because they were nearsighted, or had high blood pressure or diabetes, among other things, were not "qualified people with disabilities" because their conditions didn't significantly limit their abilities or because their glasses or medication or prosthetic limbs or whatever "mitigated" their condition to the point where they no longer had a disability.

Sensenbrenner and Hoyer say this interpretation was never intended by Congress. That's a questionable claim. The decision to adopt a clinical definition of "qualified persons with disabilities", as opposed to a strictly civil rights definition, was openly debated at the time of enactment, and the civil rights approach was defeated by people, including some who claimed to be disability advocates, who believed it is rational to discriminate against people with some sorts of disabilities in some situations.

Nevertheless, the ADA Restoration Act solves the problem by essentially getting rid of this whole "qualified person with a disability" business.

First, as STIC and other advocates have called for, provisions outlawing discrimination would no longer read "against a person with a disability"; they would instead say, "on the basis of disability". That is, it would no longer matter whether the affected person had any disability at all; it would simply be illegal to discriminate for disability-related reasons.

Just in case that message still isn't clear, the new language also redefines "disability" more broadly. No longer is it limited to "substantial impairment" of ability to conduct "major life activities". The idea of "mitigation" is explicitly ruled out, as is consideration of whether the disability is "episodic, short term or long term". A disability may be a "physical" or "mental" impairment, a "record of physical or mental impairment", or a "perceived physical or mental impairment". "Physical impairment" is any "physiological disorder or condition, cosmetic disfigurement, or anatomical loss affecting one or more of the following body systems: neurological; musculoskeletal; special sense organs; respiratory, including speech organs; cardiovascular; reproductive; digestive; genito-urinary; hemic and lymphatic; skin and endocrine". A "mental impairment" is "any mental or psychological disorder such as mental retardation, organic brain syndrome, emotional or mental illness, and specific learning disabilities". In other words, just about any medical condition or unusual physical characteristic is covered, whether it limits anybody's ability to do anything or not.

Importantly, "perceived physical or mental impairment" is defined as not having an impairment but being believed to have, or treated as though one has, an impairment.

All this new language puts the focus back where it should be: on whether a person--any person--is unfairly and unreasonably treated by some entity because of that entity's ignorance or bad attitude about disabilities, medical conditions, or physical unusualness.

In the new Congress, Steny Hoyer is now House Majority Leader. Sensenbrenner was re-elected and will presumably still be on the Judiciary Committee, whose chairperson will now be Democrat John Conyers. The House's leading ADA opponent, disgraced Florida Republican Mark Foley, who pushed Clint Eastwood's "ADA Notification Act" for several years, lost his seat in November.

If reintroduced in the House, the bill should pass easily. It may also pass the new Senate -but we should recall that Senate support for the ADA Notification Act was bipartisan, with Hawaii Democrat Daniel Inouye its sponsor. President Bush might sign a restoration bill; his Justice Department has taken pro-ADA positions on most of the Supreme Court cases, and he has his father's legacy, as signer of the original ADA, to protect.

by Maria Dibble

With funding provided by the Broome County Mental Health Department, the Broome County Children's Mental Health Task Force was able to hire the Center for Government Research to conduct a study of the needs of children with co-occurring mental health and developmental disabilities in Broome County. The comprehensive report produced from the study identified a list of priority issues, and has been a guide in beginning to address the concerns facing families, children and the entities that serve them. In addressing these priorities, the Task Force has achieved the following concrete results and outcomes:

Assessment and Referral Service

The Broome County Mental Health Department will be starting an Assessment and Referral Service for youth with "co-occurring disorders". Two groups will be served: 1) children with mental health and developmental disabilities and 2) children with mental health and juvenile delinquency problems. Two clinical psychology doctoral students will be supervised by a licensed psychologist to perform psychological evaluations, including testing required for OMRDD eligibility determinations. A part-time caseworker will be associated with this program, which will be housed at 1 Hawley St., 3rd. floor. This caseworker will be a liaison to community agencies for these "co-occurring" youth. This is an assessment and referral service only, not a treatment program. It is realized, however, that proper assessment is the first and necessary step before treatment can begin. This service will be free of charge.

SPOA and CCSI for MR & DD Youth

The Single Point of Accountability (SPOA) and the Coordinated Children's Services Initiative (CCSI) are two pre-existing programs in the community that facilitate agency, school and family collaboration to address the needs of children with serious emotional disturbance (SED). In addition they provide referral and family support services. As a result of the Task Force's efforts, both SPOA and CCSI have opened their admissions to children with developmental disabilities and mental retardation. SPOA meetings now include agency personnel from OMRDD providers, in addition to OMH agencies, to problem-solve about difficult cases. We are pleased that STIC is one of the agencies that has been invited to participate. Both programs provide a structure for community collaboration, referral and family support services to take place. Now this structure is available to kids with co-occurring disorders.

Cross Systems Training

The Task Force was responsible for developing various training modules for "cross systems" training. Some of these were pre-existing training curricula available through Broome Developmental Center. Other modules, most of which are PowerPoint presentations, were added, and focus on topics pertinent to youth with co-occurring mental health and developmental disabilities. There is a catalogue of 13 different training modules currently available that agencies and community groups can request.

Services for Youth with Co-Occurring Disorders

The Task Force was an impetus for the Children's Home of Wyoming Conference to apply for a license through OMRDD. The Children's Home of Wyoming Conference is exploring a range of services for this population.

Additionally, Broome County Mental Health Commissioner Art Johnson and others have been asked to speak to various groups around the state about our county's efforts and the work of the task force. It has generated much interest and excitement.

In the coming months, we will address other priorities identified in the study, and we hope to have even more services and other benefits to report in the future. Our ultimate goal is to see OMH and OMRDD working cooperatively and collaboratively on both the statewide and local level, so that the needs of children with co-occurring conditions will be given the attention, funding and support they truly need and deserve.

F-SHRP (pronounced "F sharp") is the "Federal-State Health Reform Partnership", a new Medicaid managed-care waiver that New York State started on October 1, 2006. Apparently the Legislature gave Governor Pataki authority to negotiate the waiver terms in the last budget cycle. It was kept so quiet that even the state's most knowledgeable disability rights advocates didn't know about it until Pataki announced it last fall. Now that advocates have seen it, many are recoiling in horror.

F-SHRP is a 5-year "demonstration" project. New York has to show that it can achieve significant cost savings in the Medicaid program by doing the following things:

• Forcing SSI recipients into managed care
• Maintaining all previously-enacted Medicaid cuts and enacting more
• "Cracking down" on Medicaid fraud
• Closing hospitals and nursing homes
• Increasing use of community-based long-term care services

The state must invest $3 billion of its own money in these measures over 5 years. In return, NY will get an additional $1.5 billion in federal Medicaid funds during that time. That doesn't sound like a very good deal, does it? But that's not all; the state must meet hard savings targets and specific deadlines each year. Failing to do so will mean some or all of the extra federal money will be lost.

There are some good things in this package, and the SSI/managed care situation isn't as bad as some people claim. However, F-SHRP locks NY into reducing the availability of health care, and will transfer huge sums of taxpayer dollars into the pockets of nursing home and hospital owners, and their creditors, in return for literally nothing. Here's the story:

Forcing SSI Recipients into Managed Care

New York began mandating enrollment in Medicaid managed care for nondisabled people in 1997. People with most disabilities could voluntarily enroll, but it was not to their advantage to do so because most managed care providers (HMOs) did not--and still don't-- provide a lot of the specialized services that people with disabilities need.

The state enacted a vague plan to mandate enrollment of people with disabilities in managed care in 1999. However, NY's "Managed Care Bill of Rights" also passed that year. It provided safeguards to ensure that people with disabilities could only be required to enroll if a choice of plans was available that had the specialized services they needed. HMOs were not required to accept people with disabilities, and most refused to do so for the rates the state was willing to pay. So very few people with disabilities ended up in managed care.

In November 2005, NY began mandating enrollment for some SSI recipients in New York City. We've been told, but couldn't confirm, that HMOs in New York State were by then required by law to accept Medicaid recipients with disabilities. It appears that there is a limited list of HMOs providing Medicaid managed care downstate--not every HMO. As best we can tell, there are still no HMOs that serve Medicaid recipients with significant disabilities across large swatches of upstate NY.

Important sections of the Managed Care Bill of Rights, including mandated "special needs plans" for people with HIV/AIDS, were quietly repealed by the Legislature last March, apparently as part of the bill that gave Pataki authority for F-SHRP. (However, people with HIV remain unaffected; see sidebar.)

Under F-SHRP, the state must expand mandated SSI enrollment to the following counties, starting January 1, 2007: Allegany, Cortland, Dutchess, Fulton, Montgomery, Putnam, Orange, Otsego, Schenectady, Seneca, Sullivan, Ulster, Washington and Yates. These counties are outside STIC's core service area, but some of our programs, such as our TBI RRDC--and new NHTD RRDC--serve some of them. Some sources say the state must add more counties in future years. We can't find a specific requirement for this in F-SHRP, but it's possible that the state will do so, for reasons we'll explain later.

Here's where it gets sticky. F-SHRP says people with disabilities who are excluded or exempted from mandated Medicaid managed care by existing state law can't be forced into the plans. Current state law exempts or excludes almost everybody with a disability from forced enrollment (see sidebar). However, in NYC the Department of Health (DOH) automatically enrolled everybody on SSI anyway. Those who were exempt (can enroll voluntarily but can't be forced) or excluded (can't enroll at all) had to send papers to DOH documenting their status and asking to be disenrolled. We expect this to happen in those upstate counties in 2007. If you live in one of them, watch for a letter from "Medicaid CHOICE". It will say that you'll be automatically enrolled, and that you can change the plan you're enrolled in, but it may not say that you probably can opt out.

This is, of course, outrageous. The state will waste millions of dollars enrolling and disenrolling the majority of SSI recipients. It's a con game being perpetrated on huge numbers of people, many of whom have intellectual or cognitive disabilities that will make it difficult for them to realize they are being conned. It is, in fact, legally-sanctioned mail fraud--akin to long-distance phone service "slamming", an illegal practice in which a person's long distance service provider is switched without their consent, and they have to pay to switch back. But it's going to happen because the state has committed, through F-SHRP, to achieve measurable cost-saving targets or else.

As part of this process, the state is supposed to beef up its notoriously lax oversight of ADA compliance among managed care providers. The state will have to submit a plan to the feds detailing how this will be done. It's not clear what penalty, if any, there will be for failing to submit a plan, or for a plan that doesn't actually improve compliance.

Maintaining Previous Medicaid Cuts and Enacting More

Under F-SHRP, every cut that NY made to Medicaid spending in the 2005-06 budget must stay cut. If any are rescinded, the entire deal is off--no extra money from the feds. When the deal was being negotiated, Pataki had some truly nasty cuts on the table. However, most of them were never enacted, so it appears that this F-SHRP provision won't have as much effect as was previously thought.

Items under this heading include: service reductions in Family Health Plus; co-pays for some Medicaid-covered prescriptions; implementation of the state's Preferred Drug List, minus the "doctor has the last word" provision that the Legislature repealed this year; and, perhaps, the ending of the expanded Medicare Part D prescription "wrap around" that is planned for January 1, 2007. NY will still provide a partial "wrap around" after that date, but advocates who want the full "wrap around" to be extended may be told that it would be an F-SHRP deal-breaker.

And, the state must adopt "at least one new Medicaid cost efficiency initiative" by mid-2007. This is where further expansion of the forced SSI managed-care enrollment process may come in--or something equally ugly. In late November the media reported that Governor-Elect Spitzer had already asked DOH to come up with $1 billion in Medicaid cut proposals for his first state budget--just as we predicted earlier this year.

"Cracking down" on Medicaid Fraud

As we've reported, over a year ago the New York Times found that Pataki's DOH had paid billions of dollars in fraudulent Medicaid claims to criminal health-care providers. However, most of the reported "fraud" was actually honest bookkeeping errors that the understaffed, political-crony-laden DOH had failed to catch. This was verified by then-Attorney General Spitzer, whose efforts to grandstand on the issue were derailed when his investigators found relatively little intentional criminal conduct involving Medicaid.

However, F-SHRP commits the state to "recover" ever-increasing amounts of money from Medicaid "fraud" in each of the 5 years of the project. If it fails to meet any of these targets, the state will have to return some of the federal project funds.

Advocates are concerned that the state will be unable to meet these targets (in Year 5, the amount is $644 million) by recovering funds from genuine fraud, and will resort to making the Medicaid claims/reimbursement process so technically difficult that a guaranteed percentage of legitimate claims won't be paid.

Closing Hospitals and Nursing Homes

Just about everyone agrees that there is "excess capacity" in hospitals and nursing homes in New York State, and that the state is wasting money helping to keep those empty "beds" open. However, deciding which facilities to close is a huge political problem. Oxen will be gored, and most of those beasts can afford to pay enough lobbyists and make enough campaign contributions to protect themselves--which means, if politics as usual is permitted to govern the process, nothing will get closed.

So a year or so ago the Legislature and Governor Pataki created the independent "Commission on Health Care Facilities in the 21st. Century", whose job was to analyze the situation and make objective recommendations on what to close where.

The Commission's report came out on November 28. Although it says that nearly 20,000 beds could and should be closed, its plan, due to political realities, will only close about 4,600 hospital and 3,000 nursing home beds (the latter figure is misleading; see below) in the immediate future. Across the state, 9 hospitals and 7 nursing homes were slated for closure. The hospitals are mostly poor-performing and/or debt-ridden private hospitals in middle-class urban areas. No facilities in the Greater Binghamton Region were selected for closure. However, the Commission also called for about 50 "reconfigurations", such as downsizing, merging two or more hospitals or nursing homes, and/or changing the services facilities provide. Willow Point Nursing Home in Broome County was targeted to lose between about 80 and 100 beds--something they'd been planning to do anyway.

Advocates had feared that hospital closures would focus on low-income neighborhoods and, perhaps, further limit already scarce emergency room services. This doesn't appear to have happened. In fact, the Commission stated that one of the main reasons for its plan was to close or consolidate poor-performing, and duplicative high-profit, facilities in order to reduce pressure on operators to close low- profit facilities in poor neighborhoods.

However, while the report cited rising demand for home and community- based services, most of the 3,000 nursing home beds to be "closed" or "downsized" would actually be replaced by "assisted living" or other segregated congregate residential models. Some assisted living facilities provide quite a bit of freedom and control to residents, others do not. We must emphasize that when people with disabilities, including those who are elderly, say they want to be served in their own homes and communities, they mean the single-family homes and apartments in integrated communities where they are living now--not in specialized segregated congregate facilities, no matter how new or open they are. That is where the real demand for community-based services is coming from.

The Legislature has to the end of the year to accept or reject the recommendations in their entirety. If they don't act, the recommendations will be adopted. At press time, some hospital operators and health industry and union lobbyists were predictably upset and threatening lawsuits, and Assembly Health Care Committee Chairman Gottfried was planning to hold hearings around the state on the issue. Both outgoing Governor Pataki and incoming Governor Spitzer urged the Legislature to accept the recommendations.

F-SHRP requires all of the recommended closings and reconfigurations to be carried out. It looks like the state plans to spend nearly a third of its $3 billion contribution to compensate hospital and nursing home operators for these actions--with only about 13% for nursing home closures or downsizing. The state must spend $600 million on "reform initiatives", including such institutional "right- sizing", in each of the 5 project years. If it doesn't meet the spending targets, the unspent portion will be cut from the federal share.

Increasing Use of Community-Based Long-Term Care Services

Among the "reform initiatives" the state must undertake are some to "shift" the long-term care system from institutional to community- based services. Specifically mentioned options are beefing up the state's Expanded In-Home Services to the Elderly and OMH community- services, but the state is not limited to those areas. We hear that $50 million will go to home modifications and housing accessibility, but we have no details. About $125 million will be spent to reimburse operators of downsized or closed nursing homes, and for related "labor costs". If the latter means higher wages for community-based workers, we're all for it. But these amounts, spread over 5 years, are pretty small and won't meet the growing need for home and community-based services.

F-SHRP requires NY to establish a single point of entry for Medicaid long-term care services, at least in one region of the state. Advocates are concerned that the state's planning for this, which has been ongoing for a couple of years, will create a system that lets counties control spending--which will result in denials of needed services.

The Forecast

Some people say it will be impossible to get the incoming Spitzer Administration to cancel F-SHRP, because they won't want to forfeit that extra $1.5 billion. It's hard to see why anybody but hospital and nursing home operators would think it's a good idea to spend $3 billion to get back $1.5 billion. It will be the job of advocates to convince Spitzer to drop this bad deal and re-open negotiations with the feds-who will have a new Democratic Congress breathing down their necks-and get off on the right foot.

by Steve Gold
(Taken from Gold's email Information Bulletin 180)

Federal Department of Housing and Urban Development (HUD) Secretary Alphonso Jackson recently wrote a "Dear Executive Director" letter to each Public Housing Authority (PHA) regarding how they could implement both the Money Follows the Person legislation and the President's New Freedom Initiative. See:

www.hud.gov/offices/pih/publications/medicareinitiative.pdf

Jackson wrote that HUD "strongly supports expanding accessible, affordable, and integrated housing options to promote the transition of people ... out of institutional settings and into the community."

He "encourage[s] all PHAs, under existing authority to set local preferences" to use their programs to transition persons out of institutions to the community. The importance of "under existing authority" is that your local Housing Authorities have the legal authority--but not necessarily the political desire or will--to "set local preferences" to "use [1] Public Housing Units, [2] Housing Choice Vouchers and [3] Mainstream Vouchers to join with state Medicaid offices and aging and disability agencies ... in promoting the [Money Follows the Person] Rebalancing Initiative."

This means that your local Housing Authority must really have "at least" 5% of its units fully accessible and if not, can use the capital allocations HUD issued recently to make the units fully accessible. It means that Housing Authorities should ensure that residents living in accessible units are disabled and require the accessible units. If they do not require an accessible unit, those residents should be transferred to non-accessible units and persons in institutions could be given a "local preference" for those units.

It means that your local Housing Authority should review their Housing Choice Vouchers and set a "local preference" for a certain percentage of unused or returned vouchers to assist persons to transition from an institution to the community.

The Secretary means that your Housing Authority should ensure that its Mainstream vouchers are being used by persons with disabilities. If they are not, then a "local preference" should be to assign the Mainstream vouchers to persons leaving institutions.

Secretary Jackson wrote that "such actions would allow ... PHAs, as recipients of federal financial assistance, to meet, in part, our obligations under the Supreme Court's Olmstead decision, to allow services to be provided in the most integrated settings."

As we reported last time, due to widespread publicity about abusive practices at the Judge Rotenburg School, the NYS Education Department (SED) proposed emergency regulations to stop those abuses and create a reasonable framework for use of "aversive treatments" for students with disabilities in exceptional situations.

SED sought public comment on the regulations, and got a very strong response from people with disabilities, their families, and advocates. Responders overwhelmingly insisted that nearly all "aversives" are inappropriate. Many advocates were eloquent in expressing their belief that it is absolutely unacceptable to do things to children with disabilities that would never be done to nondisabled children to improve their behavior.

SED took much of this to heart and in late November released revised proposed regulations, with another public comment period to end on December 15. While the new version is better, it is still unacceptable to disability advocates. Here are the highlights:

1. Specific "techniques" now prohibited

The first draft listed a few dozen procedures, most of which would be considered brutal torture if practiced on nondisabled people, in its definition of "aversives", and then said that a school could apply to be allowed to use any of them through a special process. As we suspected, this was largely an oversight.

The new draft specifically prohibits the following techniques at all times:

"ice applications, hitting, slapping, pinching, deep muscle squeezes, use of an automated aversive conditioning device, the combined simultaneous use of physical or mechanical restraints and the application of an aversive intervention; withholding of sleep, shelter, bedding, bathroom facilities, denial or unreasonable delays in providing regular meals to the student that would result in a student not receiving adequate nutrition; the placement of a child unsupervised or unobserved in a room from which the student cannot exit without assistance or actions similar to these interventions at the discretion of the Commissioner [of Education]."

However, despite the demands of many outraged people with disabilities and their parents, electric shock, use of noxious chemical sprays, and withholding food or water for long periods are not prohibited. This is the most objectionable part of the regulations, and it is absolutely unacceptable. These forms of torture must be categorically prohibited.

2. No aversives of any kind can be used on pre-school children

This is a definite improvement.

3. Much greater specificity on how behavioral plans must be written

The first draft required that aversives can only be used for severe self-injurious or aggressive behavior, and only after a carefully designed behavioral intervention plan not involving aversives has been tried and did not work.

The new version includes many more details on how these plans are to be created. It emphasizes that they must include positive behavioral supports, must include input from, and be approved by, parents, and must consider different ways the child may behave in different environments and attempt to put into place at school environmental supports that are effective in controlling the child's behavior in other places.

4. Authority to approve aversives shifted to the CSE

The original draft required all aversive treatment plans to be approved by a statewide panel of experts.

The new version downgrades that panel to an advisory role. It must review and make recommendations on every application to use aversives n a specific child from the child's CSE, but the CSE can ignore the recommendations and approve aversives even if the panel opposes them.

This is a bad mistake. Local CSE members can be pressured by teachers and school administrators to "untie the hands" of people who are dealing with a difficult child and who may be under-trained and overworked. These decisions must be made on purely scientific grounds in an environment free from influence, by people who have no personal or job-related stake in the outcome.

5. CSEs must review every aversive treatment plan at least every 6 months

6. Limited trial period for use of aversives

The use of aversives is available only for a 3-year "trial" period. Apparently SED wants to watch this issue and revisit it when it has more data. However, aversives may be continued for individual students beyond the trial period if they were approved for that student during the trial period.

7. Human Rights Committees and other impediments

Schools that want to use aversives must set up Human Rights Committees that include people from outside the school to review and monitor their use. There are additional procedural and reporting requirements for schools that want to do this. Taken together, they will cost schools some money, increase workloads for some staff, and in other ways be very inconvenient. It may be that SED wants to make these procedures so unattractive that most schools won't bother. That would be good.

8. Stiff regulation of time-out rooms

The new draft adopts very restrictive language on the use of time-out rooms. It looks much like the regulations followed by OMRDD and OMH-- something that we urged SED to consider.

Time-out can only be used as part of a pre-approved behavioral plan, in response to specific targeted serious misbehaviors. The rooms cannot be locked, and must be large enough for the student to lie down comfortably. They must be appropriately ventilated and heated or cooled. Students must be placed in them for pre-determined lengths of time, and must be under observation by staff at all times while in them.

As you can see, SED did listen to the input it received and produced a much-improved document. However, they have not yet captured the spirit of what the vast majority of people with disabilities, their family members, and behavioral scientists believe.

Instead, as we suspected, SED seems determined to compromise with a small number of desperately militant parents who have been traumatized by years of ineffective services from incompetent educators, and who as a result have been bamboozled into believing that their children, terrorized with electric shocks, ammonia sprays, and similar outrages, are actually "improved" by such procedures.

By the time you read this, the public comment period will be over. Before then, we got the word out so that SED would once again get an earful. We'll keep you informed.

In November the media reported that the federal Medicaid Reform Commission planned to release its report by the end of the year. Some of its contents were leaked to the press.

In the spring of 2005, Congress and the President agreed to create the commission to recommend long term systemic "reforms" to the Medicaid system. This was Bush Administration "now you see it, now you don't" sleight-of-hand that got influential Senate Republicans to agree to cut at least $10 billion out of Medicaid. The Senators believed they were getting a truly bipartisan commission out of the deal, when in fact the bipartisan aspect was limited to non-voting members. All of the voting members were appointed by Bush, through his Secretary of Health and Human Services, Michael Leavitt, whose anti-Medicaid bias was public and well-known.

The report will emphasize increased use of managed care for Medicaid recipients, including people with disabilities, as well as increased "flexibility" (deregulation) for states in how they administer Medicaid programs. It will also call for tax incentives for people to buy long-term care insurance, and urge the government to, in the words of the commission's vice-chairperson, former Maine Governor Angus King, "reverse Medicaid's institutional bias".

Early response was predictable. The incoming House Energy and Commerce Committee chairperson, Democrat John Dingell, quite accurately called the panel "a hand-picked commission stacked against working families." Health providers endorsed the call for more managed care, and Leavitt praised the idea of more "flexibility" for states. The only Commission member to vote against the report was the American Association of People with Disabilities representative, who pointed out that managed care has historically been bad news for people with disabilities.

The Commission was created when Republicans controlled both houses of Congress. Now that the Democrats have control, they can easily ignore the Commission's findings, as well as the Bush Administration's anticipated proposals for more deep cuts to Medicaid in 2007. They may do so--which would also mean that Medicaid's institutional bias would march merrily onward. Or they may not; it's important to remember that significant numbers of Democrats voted for Bush's last two rounds of Medicaid cuts.

Remember when late November and December used to be about togetherness and giving? That all changed when the Medicare Part D prescription program was created. Now this joyous time is known as the "Annual Open Enrollment Period", when Scrooge-like Part D plans and incompetent bureaucrats work together to take away drug benefits from people who don't, or can't, pay attention.

You'll recall that people eligible for both Medicaid and Medicare, the "dual eligibles", were forced into Part D last year. They were randomly enrolled in "benchmark" plans with premium costs at or below a federally-set amount. These enrollments were done without regard to whether the plans covered the drugs the people actually needed. Many dual-eligibles had to scramble to get into different benchmark plans.

Well, it's going to happen again. Between raised rates and federal recalculations, six of the benchmark plans will no longer be benchmark in 2007. Dual-eligibles in those plans will be randomly re- assigned. These folks should get a letter announcing this, but if last year is any guide, many won't get it before they're suddenly unable to fill a prescription.

Then there are dual-eligibles who lost their Medicaid for some reason--either their incomes grew or some official botched some paperwork. Because they were enrolled in benchmark plans whose premiums were automatically subsidized, and they're no longer eligible for that subsidy, they may be disenrolled and have no Part D plan in January. They may have to apply for the Part D low-income subsidy as well as re-enroll in a plan.

If you're a dual-eligible or you work with them, watch the mail for announcements of Part D plan changes.

For the rest of you on Part D: many, many plans are changing their "formularies" (lists of covered drugs), as well as their premiums and co-pay rates. Do not assume that the plan you're in now will work for you in 2007. Your current plan should inform you of any changes. Watch your mail also, and choose a new lan by December 31, 2006. If you miss that deadline, you'll be stuck in your current plan for another year.

by Adam Cybulski

The federal Center for Medicaid and Medicare Services (CMS) issued a new Power Mobility Device (PMD) Coverage Policy, which was slated to take effect on November 15. The new policy contains reimbursement cuts of up to 40% and makes the criteria for receiving a power chair much more restrictive.

The new regulations don't allow for progressive loss of function, meaning that if a person doesn't need a power chair or scooter today, but will likely need one in a year, they don't get one. Furthermore, the new regulation only authorizes a PMD if it is needed to get around inside the house. So a person who can get about her apartment with a manual chair, but needs a scooter to go to the store down the block, or to bingo at the senior center, can only get a manual chair. This policy change will have an immediate and direct result of isolating people with disabilities and imprisoning them in their own homes.

Disability advocates have been working to get this change delayed beyond the November 15 start date, and ultimately to get it removed. If you would like to learn what you can do to help fight to maintain the rights and independence of people with disabilities, please contact Adam Cybulski at STIC at 724-2111 (voice/TTY), or advocate@stic-cil.org.

Unfortunately, by time this newsletter is published, the policy may already be in effect. Be sure to look for a follow up article in the next newsletter.

On November 20, 2006, the NYS Most Integrated Setting Coordinating Council (MISCC) performed an amazing feat: it released a 175-page document that contains almost nothing. Entitled "Addressing the Service and Support Needs of New Yorkers with Disabilities", it's the MISCC's very late response to its legal mandate to produce a comprehensive and detailed action plan to ensure that every single New Yorker with a disability lives, works, learns, and plays in the most integrated settings possible.

We've described what's supposed to be in the plan that way to keep this article short. But we're not exaggerating what the law required the MISCC to do. The plan should have contained concrete, detailed descriptions of barriers and needs in each area of disability-related service, accompanied by clear, detailed explanations of exactly what will be done to address them. It should have delineated current waiting lists for all types of services and described how the state will ensure that people get off those lists at a reasonable and continuous rate. And it should have stated, as the law requires, that "each commissioner and director serving on the council shall ensure that his or her agency implements every aspect of the plan ... which falls under the responsibilities of his or her agency."

The plan does none of this. Instead, it summarizes input from consumers and advocates. It lists most of the known problems and gaps in the system. These lists are lengthy but provide no insight as to why the problems exist. There are also "recommendations", in highly general terms, for the agencies to carry out. And the report shows that the MISCC is abdicating its legal responsibility to ensure that the recommendations are carried out: it says each agency will only do those things that are "appropriate and feasible".

Now why on earth would Tom Maul and his Commission make recommendations that weren't "appropriate", when the rest of the Commissioners were sitting right there at the table when they did it? They are all appropriate. And the Council was supposed to find out why doing what is appropriate isn't always feasible today, provide specific directions on how to make it feasible soon, and require that those things be done. Instead, whether or not any changes are made to the system is left to the discretion of the agency heads, who have been busily not making those changes for several years already.

This was, of course, inevitable. The planning process was overseen by (now former) OMRDD Commissioner Tom Maul, who was just one of several top disability-service-agency bureaucrats who were dragged, kicking and screaming, to the table to produce this plan. Most of these people (barely) participated, with an attitude that was both snidely self-congratulatory concerning what little had already been done, and sourly cynical regarding the future. These people had no intention of producing a workable plan. And they are trying to avoid responsibility for their inaction by failing to meet another requirement of the MISCC law--hiring independent consultants to evaluate their work.

The reason why we don't have an adequate plan is structural. New York's disability-related services are provided by 11 separate and sovereign bureaucratic fiefdoms, each headed by administrators who are allowed to do virtually whatever they want. Naturally, they won't do anything that would reduce the size of their agencies or their personal administrative discretion. And, like most administrators in the public and private sectors, they also won't do anything that would make their key underlings (each of whom is lord of all they survey within the fiefdoms) unhappy.

The answer to this problem is leadership-from the top. We have a new administration in Albany. Will Eliot Spitzer have the guts to do what really needs to be done--consolidate these programs and services under one agency whose commissioner will take orders from him? Probably not. Will he at least realize that he must provide a uniform disability service policy focused on the single outcome of getting everyone into the most integrated settings? Perhaps. Will he then accept responsibility for making his department heads implement it, and fire them if they don't? We'll see. He has a historic opportunity here, and the disability community stands ready to help him make the most of it.