AccessAbility

In July the House of Representatives passed a FY 2006 appropriations bill that restored all funding to the HUD Section 8 facility-based housing subsidy program (that provides subsidies to people living in HUD projects) and increased the Section 8 tenant-based Voucher program (which lets tenants use housing subsidy vouchers with any landlord who accepts them) by over $100 million compared to 2005. Also, the House soundly rejected the Bush Administration's "Flexible Voucher" program that would have seriously weakened the Section 8 program's ability to assist people with very low incomes. This was a major victory for disability advocates.

At press time we didn't have any information on Senate plans for Section 8. We'll let you know when we do.

by Chris Zachmeyer

The Catskill Center for Independence, located in Oneonta, was recently awarded a grant to promote the successful implementation of the Help America Vote Act (HAVA) of 2002. This four-year project, Project HAVA, funded by the NYS Commission on the Quality of Care, will allow the Center to expand its efforts to ensure all New Yorkers are afforded the opportunity to privately and independently cast their vote at the ballot box on Election Day. One of the major goals of HAVA is to ensure full and equal voting access to voters with disabilities, something the Catskill Center has been working on since the early 1990s.

Other goals of Project HAVA include outreach to voters across 52 upstate New York counties to provide information and technical assistance on HAVA, the rights of voters with disabilities, voter registration and absentee ballots, polling site access and voting machine accessibility.

Currently, four regional trainings across the state are being planned to provide information about HAVA, voting rights of citizens with disabilities, how to file a discrimination complaint, and other voting related information to eligible voters with disabilities. These trainings will also include instructions for assessment of polling place accessibility. In addition, similar trainings will be provided for Board of Elections officials, polling site workers, politicians, and others with a responsibility for and an interest in the voting process. Facilitation of private and independent voting for people with disabilities will be addressed along with the previously mentioned topics.

The Center has developed an interactive website with information on accessible voting, registering to vote, filing a complaint, HAVA implementation, current news articles about HAVA and accessible voting, links to other resources, a voter pledge site, and a bulletin board listserv to ask voting related questions and have voting related discussions. In addition, a voter information hotline has been established to provide technical assistance and answer questions:



To learn more about the project, or to find out how you can become involved, visit the Center's website at www.ccfi.us, email us at:

Mr. Roberts Goes to Court

"Maybe that's why we're on this ship, cause we're not good enough to fight." - Doug Roberts, in Mister Roberts

Out of all the possible centrists, conservatives, and religious reactionaries George W. Bush could have picked to replace Sandra Day O'Connor on the Supreme Court, he chose John G. Roberts, Jr.. Roberts, a baby-faced baby-boomer, clerked for Chief Justice William Rehnquist. He has split his career between stints as a lawyer for Republican administrations and private practice. He has just two years' experience as a judge--on the federal Circuit Court of Appeals for the District of Columbia, to which Bush appointed him in 2003. Roberts is widely regarded by people of all political stripes as a smart, charming, cute, and funny guy. It's also been said that it's hard to know what he really believes. We agree, but here's what our research shows:

While he does belong to a couple conservative lawyers' groups, Roberts never joined the radical right-wing Federalist Society, as was widely and wrongly reported in the media.

Roberts argued in favor of several very conservative positions before the Supreme Court as a Justice Department lawyer working for Presidents Reagan and Bush I. But it's important to remember that lawyers argue the positions they're paid to argue--and most of the hard-right social policy beliefs attributed to him by opponents come from that period of his career.

As one of the most highly-regarded and in-demand appellant lawyers in the US, he argued many cases before the Supreme Court, representing a wide range of political and philosophical views. Unlike many rigidly socially conservative lawyers, he chose this variety of cases on purpose and is proud of it. He did argue against Williams in the Toyota v Williams case, in which the Supremes found that carpal tunnel syndrome doesn't meet the ADA definition of a disability that substantially limits one or more major life activities. That was not a happy day for the disability community, but as we said at the time, that's due at least as much to flaws in the ADA's approach to defining disability as it is to the Court's misinterpretation of it. And as a Circuit Court judge he later upheld Section 504 of the Rehabilitation Act's applicability to programs that get federal money. There's not enough evidence to say that Roberts is anti-disability rights.

His brief record as a judge suggests only that he tends to make the most narrow ruling possible on a given set of facts and law. Such a tendency is "conservative" in judicial terms, but it's neither "liberal" nor "conservative" in public policy terms; in some cases it benefits the Left, in others, the Right. With his narrow focus, he has ignored judicial precedents that call for broader interpretation at times, such as in the famous "hapless toad" environmental case, when he said that the federal government can't use the Constitution's Interstate Commerce Clause to protect an endangered species that lives in only one state. When he has taken such positions, he's been reversed by the Supremes--the same Justices he'll be working with if he is confirmed, including Scalia in at least one case. (In the toad case, Roberts also said there were other valid legal arguments not involving the Interstate Commerce Clause that could have been used to support the environmentalists' position. Whether that's right or wrong, it suggests that he was simply following the law as he saw it and not trying to advance an anti-environmentalist agenda.)

If we leave out the positions he's been paid to take, there's little evidence for claims by the Left or the Right that this guy is a public-policy conservative in the molds of Justices Scalia and Thomas. When Bush the First appointed David Souter to the Supreme Court, he, like Roberts, was called the "stealth conservative". Souter had a much longer record as a judge than Roberts does, and on that basis some right-wingers confidently predicted that he'd be another Scalia. They were wrong. Justice Souter turned out to be a moderate who has supported many progressive positions. Then there was Harry Blackmun, the "strict constructionist conservative" appointed by Richard Nixon whose opinion in Roe v Wade legalized abortion. Bush has sworn to appoint people to the Supreme Court who will echo Scalia's and Thomas's radical views, and he probably thinks Roberts is that guy. On the other hand, he could be confusing "conservative approach" with "social conservative", as Nixon and Bush I did.

In any case, in late August it seemed unlikely that any Senators would seriously try to block Roberts' confirmation. If they did, Bush would just appoint someone else who he thinks agrees with him--perhaps, as the mid-term elections approach, an avowed social conservative, in order to energize religious right voters. As long as the Republicans control the Senate, we're going to get Court appointees who are at least billed as very conservative. It might be better just to take Roberts than to stage a doomed fight that will push Bush even farther to the right.

Goodman v Georgia

Tony Goodman is not a nice guy. He's been convicted of violent assault, illegal gun possession and drug-dealing, some of which he did after he became a paraplegic. He's nobody's poster boy for disability rights. Of course, neither is George Lane (of Tennessee v Lane).

Even so, civilized nations don't punish criminals by making them sit in their own bodily wastes and risk injury every time they take a shower. But the Georgia State Prison had no accessible bathroom facilities, and Goodman's cell was too small to get around in his wheelchair. Given an accessible toilet and shower, and space to maneuver, most paraplegics can transfer themselves between their wheelchairs and the necessaries. Without them, they need help, and Goodman said the guards wouldn't help him even after he complained to their supervisor and the warden. He was injured while trying to transfer himself, and several times was left lying in his own waste for hours. So he sued the state, its prison department, the warden, and anybody else he could think of, alleging violations of the 8th. Amendment of the US Constitution (which forbids cruel and unusual punishment) and Title II of the ADA, which requires state governments to make programs and services, including prisons, accessible to people with disabilities.

The federal District Court said he couldn't sue for money damages under the ADA for the now-familiar reason that most such claims against states are unconstitutional on 11th. Amendment grounds. In fact, it held that he couldn't sue at all: because he'd been transferred to a different prison, his case was "moot".

The Eleventh Circuit Court of Appeals agreed that Goodman can't sue for money damages under Title II, but it overturned the District Court's holding that the case was moot, because the state had moved Goodman back and forth between the inaccessible prison and other prisons a few times and was likely to do so again. The appeals court also said that, even without the ADA, Goodman probably has a good 8th. Amendment case. This didn't satisfy Goodman, who still wanted compensatory and punitive damages, so he appealed to the Supreme Court. The Bush Administration supported him (as it did Lane's appeal), and the Supremes agreed.

This complicated and ugly case matters to people with disabilities for two reasons: First, the appeal to the Supremes cites the precedent they set in Lane: that is, if a state violates a person's fundamental civil rights due to that person's disability, and those rights are guaranteed by other parts of the Constitution, the ADA's remedies for such violations apply and can be enforced even if Title II itself is unconstitutional under the 11th. Amendment. Second, if Roberts is confirmed, this may be his first ADA case, and he may not agree with his predecessor on this point.

This case will probably be heard in November and we'll get the results next spring.

Title III Takes On Water but Stays Afloat

The US Supreme Court issued its decision in Spector v Norwegian Cruise Line in June. We reported this case last spring: It's a class action filed against the cruise ship company under ADA Title III for failure to make some ships physically accessible, and for discriminatory policies, including higher ticket prices, requirements for nondisabled traveling companions and waivers of medical liability, and a provision that passengers with disabilities could be removed from ships if they "endangered other passengers' comfort".

The federal District Court ruled that Title III applies to cruise ships, but its barrier-removal rules couldn't be enforced because at the time of the suit, a federal agency had not issued suitable access guidelines. The 5th. Circuit Court of Appeals said that US laws don't apply to foreign-flagged ships so no part of Title III was enforceable.

The flags in this case were "flags of convenience". Norwegian Cruise Lines is incorporated in the Bahamas and its ships fly that nation's flag, but its headquarters is in the US and it picks up passengers in, and returns them to, US ports. Its cruise ships are floating hotels, nightclubs and restaurants, and its policies state that any disputes with customers will be resolved under US law.

So it went to the Supremes, who did not grant a clear victory to either side. Justice Kennedy wrote an opinion containing several sections, and the "judgment of the court". Six Justices supported the judgement that the Circuit Court was wrong and must reconsider the case. There was no majority supporting the entire decision, but five Justices agreed with most of it, taking a weaker view of Title III applicability to foreign-flagged ships than disability advocates wanted.

The case law shows that the US can regulate foreign-flagged ships. Some cases suggest that US law governs only shipboard matters that "disturb the peace of the port" the ship is in. For example, we prosecute crimes committed on foreign-flagged ships in US waters. Others show that we can regulate anything that isn't purely a ship's "internal affair". So while US labor law doesn't apply to sailors on a foreign ship, it does apply to dealings between such ships and US-based longshoremen. Laws governing ships may conflict with those of other nations in whose waters ships sail and could affect US relations with other governments. Courts have ruled that Congress can take that risk if the law makes a "clear statement" that it applies to foreign-flagged ships. The case hinged on the fact that Title III, which covers public accommodations like hotels and restaurants, and public transportation, including passenger ships, contains no such statement.

Kennedy's opinion, with which four other Justices concurred, takes the "internal affairs" line. It says that things like ticket prices and rules that passengers with disabilities need nondisabled "minders" are company practices, not internal to ships, and therefore governed by Title III, but physical access issues that affect a ship's design, construction and safety may not be covered. Justice Ginsburg, with Breyer concurring, said that barring a real threat to international relations, "asserted internal affairs of a ship should hold no greater sway than asserted management prerogatives of a landlocked enterprise." Justice Scalia's dissent, joined by O'Connor and Rehnquist, insisted that without the "clear statement", no part of Title III applies to foreign-flagged ships.

Scalia may have gone overboard with that dissent, but he did point out that an international treaty governs passenger ship safety, and some of its provisions conflict with access design standards. For example, watertight doors must seal all the way around, and the treaty requires all such doorways to have a 3-to-6-inch-high "coaming" (threshold) to ensure a good seal. It might be possible to design a ship whose doorways can seal with thresholds no higher than 1/2 inch (the US access standard), but it's unlikely that existing ships could be retrofitted "without significant difficulty or expense", as Title III requires. In any case, such a ship would violate the treaty. There are limits on how much physical access can reasonably be expected from international ship operators-at least until disability activists start rewriting international treaties.

Maybe the plaintiffs should have tried to prove that "Norwegian" Cruise Lines is essentially an entirely US company and its "international" pretensions are fraudulent, having been adopted purely in order to avoid this kind of regulation by the federal government.

So what does this mean for travelers with disabilities? Some newer ships and cruise lines are more accessible than others, and people should shop around. In any case, these companies can't legally tack a surcharge onto your ticket price, make you bring a "babysitter", or throw you off the ship if some other passenger claims that looking at you makes her "uncomfortable". It would also seem reasonable to expect them to fully disclose in advance the access features of a particular ship and make an effort to book you on the most accessible of their vessels. And there could be further litigation on this issue, though that may just further muddy the waters.

This summer saw several developments in the struggle over Medicaid "reform" and cost-cutting at the national level. Disability advocates and the Bush Administration agreed on some general cost-cutting strategies but were at odds on others. At press time there was no clear picture of how things will end up.

You'll recall from our last issue that Congress passed an allegedly binding budget resolution that called for cutting federal Medicaid spending by $10 billion over 5 years, and created a Medicaid Reform Commission to figure out how to do it.

In June committees in both the House and Senate held Medicaid hearings. Governors Mark Warner (D-VA) and Mike Huckabee (R-AR) presented the National Governors Association (NGA)'s proposals. They called for: higher co-pays; letting states offer different packages of services to different groups of people, perhaps based on diagnosis; "relief" from court orders requiring states not to cut or limit Medicaid services; changes to federal drug purchasing rules; limits on asset transfers by people who use them to hide income in order to qualify for Medicaid; and tax incentives and creation of insurance pools to increase coverage for uninsured people.

Although Congressional Democrats said they'd boycott the Reform Commission because it isn't truly non-partisan, the Commission is operating, and some public health advocates are on it. It issued a request for ideas this summer. The National Council on Independent Living (NCIL) proposed several: Substitute lower-cost home and community-based services for institutional long-term care where possible; demedicalize support services to end the use of expensive medical professionals for tasks that paraprofessionals or attendants can do; step up measures to detect and punish Medicaid fraud; cut prescription costs by changing purchasing rules, emphasizing generic drugs, creating multi-state purchasing pools, and tapping expected savings from transfers of "dually-eligible" people from Medicaid to Medicare prescription coverage; and consolidate programs to cut administrative costs. NCIL strongly opposed any co-pay increases.

Around the end of July, two Republican Senate committee heads said they were looking seriously at four ideas that resemble NGA and/or NCIL and/or Bush Administration proposals to meet the $10 billion target: changing drug reimbursements to reflect actual market prices more closely; restricting asset transfers; better Medicaid fraud detection and prevention; and savings resulting from the new Medicare drug program. They also said that Medicaid providers are pushing hard for rate increases, and they were non-committal on the subject of co-pays.

The "relief" from court orders that the NGA wants may come from a bill introduced in the House and Senate this spring: the "Consent Decree Fairness Act". It would automatically cancel consent decrees affecting state and local governments if they aren't renewed by a court every 4 years, or whenever a new official is elected. We aren't sure how dangerous this really is; if a consent decree is still relevant to current conditions, the court that imposed it will be monitoring it and it shouldn't be hard to get it renewed. Consent decrees may be settlements negotiated between parties to lawsuits over deinstitutionalization, education services, or civil rights violations, in order to save time and money, before a court rules. However, some federal courts have ruled that states violate federal Medicaid law if they don't pay providers enough to ensure that high-quality Medicaid services are readily available to meet the needs of all eligible people throughout a state. We don't know if the NGA also wants "relief" from such decisions. That could only be provided by changing parts of the Medicaid law, which would be bad news for people with disabilities.

On August 9 the Bush Administration presented its Medicaid proposals for the FY 2006 budget to Congress. These included both "New Freedom Initiative" and cost-cutting ideas.

The "New Freedom" items included the previously-proposed "Money Follows the Person" demonstration project as well as demo projects for respite and home and community-based children's psychiatric services; letting states opt to provide up to 90 days of home and community-based services to people while their Medicaid eligibility is being determined; and letting people with disabilities keep their own Medicaid coverage if their disabled spouse loses eligibility after returning to work. These are all good ideas, but Congress has repeatedly ignored many "New Freedom" proposals and the Bush Administration has never fought for them.

Bush's cost cutting plan includes some quite interesting things. It's also notable for what it doesn't contain; there is no effort to eliminate any optional services or increase co-pays, as had been feared. Here's our analysis (quotes are from the Administration's proposal summary):

1. "...limit the federal reimbursement to states for Medicaid pharmacy payments (including drug costs and dispensing fees) to the amount the state would have paid, in the aggregate, for covered outpatient drugs based on the manufacturers average sale price for such drugs (as determined under Medicare)."
   
   This is the drug pricing reform that almost everyone has called for.
   
   
2. Change the existing Medicaid ineligibility period resulting from a transfer of assets "for less than fair market value" to begin either on the date of the transfer, or the date when the person would otherwise become eligible for Medicaid (say, via a spend-down or termination of private insurance benefits) while "receiving long-term care services either in an institution or, in certain circumstances in the community", whichever is later.
   
   We don't know what "certain circumstances in the community" means, but it implies that the new rule might not be as tough on people who remain in their own homes.
   
   Some disability advocates oppose this. STIC's position is that people who can afford to pay for health care while keeping a decent standard of living, whether directly or by buying insurance, should be expected to do so. We'd prefer a universal single-payer system, with sliding-scale premiums based on income, but we don't have one. So the proper role of government-funded health insurance today is to pay for needed services that private insurance won't cover, and for services for people who can't afford or can't get private insurance, or who would be impoverished after purchasing the services. We see no reason in most cases to let well-off people give away large amounts of money or property and then expect the government to pay for their health care. An exception might be made for parents who set up special-needs trusts to provide a home for a child whose disability is so severe as to make earning enough money to buy and keep up a home unlikely.
   
   
3. "reduce from 6% to 3% the percentage of provider revenues (attributable to a designated class of health care services) which a State can collect through a tax on such revenues... The new 3% limit would be effective immediately for [new] tax[es] ..." For existing taxes, the rate would be reduced gradually over 3 years.
   
   This limits "kick-back" schemes that let states collect more federal matching dollars than their actual Medicaid spending would justify, as applied to private providers. Fewer Medicaid dollars would be paid back to states as taxes and could be used for services instead. Of course, it also might force states to cut those services in response to the loss of tax revenue.
   
   
4. Allow states to tax all types of managed care programs.
   
   This looks like an attempt to compensate states for the above cut in allowable tax percentage so they won't have to cut services. Of course, getting any such new tax on private businesses past the current crop of mostly conservative state legislators and governors might be pretty tough.
   
   
5. "...preclude Federal matching payments for any portion of State payments to State or local government providers that (1) is not retained under the ownership and control of the provider for purposes of furnishing Medicaid care and services, or (2) as a condition of the provider's receipt of Medicaid payment, is either returned by the provider to the State or local government or used to supplant other State or local funding obligations."
   
   This completely ends "kick-back" schemes as applied to government-operated health care services. Again, it could force service cutbacks by states.
   
   STIC's position is that New York's federal matching share for Medicaid services should be increased; currently we get the lowest match rate in the nation to serve a disproportionately high percentage of people who qualify for Medicaid. Even if these "kick-backs" make more funds available to states for services, we think they waste money on paperwork and accounting--maybe even more than they save--and should be discontinued.
   
   
6. Redefine "... 'rehabilitation services' to clarify that such services are those necessary for the achievement of specific, measurable outcomes related to restoration of an individual to his or her best possible functional level, so long as they are prescribed and furnished by (or under the supervision of) a physician or other licensed practitioner and are not provided as an intrinsic element of another program.... also ... disallow ... State expenditures ... if such services are routinely provided in the State without charge, are not billed on a fee schedule, or are not provided with respect to a specific individual."
   
   
7. Redefine Medicaid "case management services" in similar ways to those described above.
   
   We aren't sure, but these two items might stop states from converting some existing non-Medicaid programs to Medicaid purely in order to get the feds to pay for them. Recent examples in NY included OMRDD's transfer of extended supported employment services to its Medicaid HCBS Waiver, and the OMH PROS initiative that made its supported employment program a "clinical" service.
   
   State officials and some advocates claim that on balance these conversions are good because they bring the state more money to provide more services. This may be the intent, but as experienced service providers we can testify that, in at least these two cases, all the "new money" has been or would be eaten up by the massive increase in regulatory requirements that comes with Medicaid funds. Those requirements also slow down service delivery, reduce consumer control, and cut the number of eligible people in some cases. Whatever the intent, in reality these conversions make things worse, not better. Providing more of the wrong services is not a net benefit, it's a net loss for both people with disabilities and all taxpayers. Instead of letting states cram non-medical services into a medical model to get more federal money, the feds should create fiscal incentives for states to consolidate and demedicalize these services.
   
   
8. Cut the federal matching rate for both State plan "targeted" and HCBS waiver case management services to 50%.
   
   This wouldn't affect NY because our maximum Medicaid federal matching rate is already 50%.
   
   
9. Set "... a State-specific limit on the amount of Federal matching funds available for the costs of administering the State's Medicaid program, by establishing an administrative costs allotment for each State. Such costs allotments would be based on the administrative costs for each State for a base year, increased for each successive year by the percentage increase in the consumer price index plus 4.5%."
   
   This might save money. We're all for cutting administrative costs, especially by consolidating NY's wide array of separate programs that do the same things for people with different disabilities at different ages into one office with one set of rules. However, in the wake of the Medicaid fraud scandal reported by the New York Times, which resulted from the state's failure to spend enough on administrative oversight, there could be trouble here (see this issue's editorial and this article).
   
   

Congress will probably be back from summer recess by the time you read this, and they'll be busily grinding all of these ideas, good and bad, into some kind of mish-mash whose shape we can't yet predict. Stay tuned.

Disability rights advocates failed to keep the state Legislature from re-authorizing Kendra's Law this year. However, they did defeat attempts supported by both Governor Pataki and gubernatorial candidate Elliot Spitzer to make it permanent and even more restrictive.

"Kendra's Law", or the Assisted Outpatient Treatment Act, allows medical and social service professionals to drag certain people with mental illness into court to force them to take medication, participate in therapies, and/or enter an institution. It's named after Kendra Webdale, a woman who died after being pushed in front of a subway train by a man with mental illness who desperately wanted and asked for treatment that was repeatedly denied.

Research has shown that the real issue is failure of state and local governments to make adequate mental health treatment and support services available, not people refusing such services. The only good thing about the law is that it also forces governments to provide the services.

Not only does the law violate people's human and civil rights to be free of coerced medical treatment and unnecessary incarceration; program data show that it is used disproportionately to lock up and drug people of color in numbers far beyond the relative incidence of mental illness among them.

Here's a summary of the most important new parts of the law:

It will expire on June 30, 2010 if not renewed. The state Office of Mental Health (OMH) must provide annual reports to the Governor and Legislature on activities under the law, including demographic and cost data on those forced into treatment. OMH must also arrange for an "independent research organization" to evaluate the effects of the law by June 30, 2009 and make the evaluation public so we can have an informed debate on whether to renew the law again. Licensed psychologists and clinical social workers are added to the list of people who can request forced treatment from a court (they were already doing so under the supervision of agency directors who had that ability). OMH and the Office of Court Administration must provide mental health issues training to Supreme and County court judges and personnel.

The destructive proposals defeated by advocates included, along with the attempt to make the law permanent, an amendment to convert voluntary treatment plans, agreed to by people with mental illness as part of the court hearing process, to forced treatment, and an effort to increase the term of forced treatment from 6 months to a year.

As far as we can tell, neither the Most Integrated Setting Coordinating Council (MISCC) nor its permanent committees have met since last fall. Last time, we reported that an ad-hoc committee had revised the committee reports in response to disability community advocates' objections. MISCC Chairman (and OMRDD Commissioner) Tom Maul had then sent the revisions to the state agency heads for comments. In July, Maul wrote to MISCC members to tell them what was going on. STIC has a copy of his letter. Maul said that he expected that with the annual budget fight out of the way, the agency heads would be able to review the reports and he would "convene a series of meetings to include ad hoc committee members, MISCC committee chairs and members and top leadership personnel from each state agency" to get the final report done. To date, we have not heard that any of these meetings has been scheduled or held.

The rest of the letter described activities of the Pataki Administration that Maul called "significantly MISCC-related". Many of these were small funding increases for various home and community-based support programs that we reported in previous issues. One was the state Department of Health's ongoing work to prepare an application to the feds for the new Nursing Home Transition and Diversion Medicaid Waiver. During the battle to pass the MISCC law, disability advocates said that such a waiver was consistent with the plan for compliance with the Supreme Court's Olmstead decision that the MISCC was supposed to produce, and that the need was so clear that the state should go ahead with it before the rest of the plan was written.

That was not the case for two other "MISCC-related activities" listed by Maul. One was the state's shadowy hospital and nursing home "right-sizing" initiative, whose details both the state and the federal Centers for Medicare and Medicaid Services have tried to keep secret and which may be tied to Pataki's avowed desire to shove all New York Medicaid-funded programs (except those controlled by Maul at OMRDD) into one big managed care waiver. The other was the State Office For Aging's work to develop a single point of entry system for disability support services.

Certainly downsizing institutions and providing a single point of entry are important pieces of a good Olmstead plan; in fact, the latter is specifically mandated by the MISCC law. But both of these activities are far-reaching, potentially highly-destructive efforts to change the way long-term care services are delivered in our State. Planning and program development in these areas is the mission the MISCC is legally mandated to carry out, and depends critically on the data the MISCC is required to gather. The MISCC is the state's legally adopted mechanism for long-term care reform and the only one that has formal continuous input from the disability community. Yet these activities have been conducted entirely outside the MISCC.

Governor Pataki's political campaigns have been financed by segregated facility operators and lobbyists, and he clearly considers input from the disability community to be unpalatable. These developments are consistent with his Administration's previous attempts to render the MISCC's work meaningless and the disability community irrelevant.

The conclusion of Maul's letter states, "With these developments and many other state agency initiatives, New York is clearly moving forward with the most integrated setting agenda." That may be true, but the larger question is, "Whose agenda?"

You may have received a letter this summer from the Social Security Administration (SSA) or the Center for Medicare and Medicaid Services (CMS) that talks about "Extra Help" with the new Medicare prescription program. We hope you read the letter and are acting on it. If you threw it away, you need to talk to STIC's Benefits Coordinator, or your Medicaid or Social Security caseworker, because this stuff is important.

This "Extra Help" is really the Medicare Part D Low Income Subsidy. It's what will protect many people from large deductibles and co-pays in the new prescription plan.

If you get both Medicaid and Medicare ("dually eligible"), you'll automatically get this "Extra Help". But remember that on January 1, 2006, your Medicaid drug coverage will end. Instead, you'll get prescription coverage from the new Medicare Part D program. This fall you'll get another letter reminding you that you can choose one of many prescription plans under Part D. If you don't choose a plan, you'll automatically be enrolled in one. There may be several very different plans that cover different drugs and have different rules. You really need to learn about these plans so you can pick the one that will work best for you.

If you're on Medicare but aren't "dually eligible", you'll also get to pick the Part D plan that's best for you. And if your income is low you may still be able to get the "Extra Help" but you'll have to fill out an application for it. The application isn't simple, and you may need help. If you don't fill it out, you may find that you either must pay between several hundred and several thousand dollars per year for medications, or not receive the medications you need.

New York State has promised to use Medicaid to pay for necessary drugs that "dually eligible" people need but that their Part D plans don't cover. But the new Medicare law won't let New York use Medicaid to help you pay deductibles and co-pays for medications. So please, don't ignore this issue. Read those letters and get the help you need.