AccessAbility

A Little on Alito

After our last issue went to press, US Supreme Court Chief Justice William Rehnquist died, and President Bush changed his nomination of John Roberts from Justice O'Connor's seat to that of the Chief Justice. Roberts (discussed in our last issue) was confirmed. Bush then appointed Harriet Miers to O'Connor's seat, but because she lacked a clear record on issues dear to the hearts of right-wing extremists and did not appear to be particularly bright or otherwise qualified to be a judge, there was a storm of protest from Bush's right-wing base. Miers withdrew from consideration, and Bush nominated Third Circuit Court of Appeals Judge Samuel Alito in her place.

Unlike Roberts and Miers, Alito has a long history as a judge involved in federal cases. He is applauded by conservatives as an outstanding candidate "in the mold of Justices Scalia and Thomas", as they like to say. Moderates and liberals in Congress and among various interest groups view him with considerable alarm--so much so that the Republican Chairman of the Senate Judiciary Committee has postponed hearings on the nomination until January, to give both sides time to gear up. It appears that this nomination will face a major battle in the Senate and there may be an attempt to filibuster it out of existence.

Last summer, seven moderate Republican Senators helped the Democrats head off the "nuclear option" (a rules change to disallow filibusters of judicial appointments). They may be critical to this issue. Two of them have already said they won't oppose such a change if push comes to shove over Alito. However, some of them might decide that Alito is too far right to be acceptable. Given his poor poll numbers, several corruption scandals in his administration and party, and growing unrest among fiscal conservatives over the ballooning deficit caused by his don't-tax/still-spend policies, Bush may not have the political strength to push this nomination through if it gets ugly.

Many disability advocates have come out strongly against Alito as a serious threat to civil rights in general and to the rights of people with disabilities in particular, based on his record in several cases. We have read the full opinions on as many of these cases as we could find, and what follows is our analysis.

The national disability rights group ADA Watch provided a list, prepared by disability lawyer Claudia Center, of summaries of 21 disability-related opinions involving the federal Rehabilitation Act, the ADA, IDEA, the federal Fair Housing Act, and others, that Alito either wrote or joined as a Third Circuit judge. We had enough information to evaluate 18 of those cases.

As we see it, nine of these opinions are unabashedly favorable toward people with disabilities.

Four cases were, in our view, correctly decided in light of the law though unfavorable toward people with disabilities. Among them were:

Doe v National Board of Medical Examiners: We don't agree with other disability advocates who object to this decision. We think it's quite possible that giving extra time to take a knowledge test to a person whose disabilities do not affect intellect, cognition, or learning could give that person an unfair advantage. We also agree with the Court on the following points: The ADA's specific provisions on access to tests, rather than Title III's general prohibition on discrimination by public accommodations, govern the case. There is nothing in the law that prohibits "flagging" test scores as "accommodated". And, since Congress put provisions to protect the confidentiality of a person's disabled status in Title I, but didn't in Title III, it's likely that Congress didn't intend Title III to confer such a protection. We also note that the opinion set forth ways in which Doe or others like him might present a case strong enough to overcome these points.

Rouse v Plantier: This class-action suit was brought by several diabetics in a prison who claimed that the facility violated the Eighth Amendment prohibition of cruel and unusual punishment. The facts in the case were in dispute and concerned what defines adequate medical treatment for diabetics. As a diabetic, I know that there is great variability in proper treatment depending on the individual. Unlike Center, I don't think it's "problematic" to find that diabetics whose blood sugar levels tend to be stable can't be included in the same class as those whose levels fluctuate wildly. A "one-size-fits all" treatment in order to be "safe" rather than "sorry" is not acceptable; the intensive regimen needed by people with unstable blood sugar is painful, time-consuming, hard to control, and expensive, and therefore wrong for those whose blood sugar is stable. This decision, authored by Alito, simply told the lower court to go back and rethink who properly belongs in the aggrieved class. A smaller class of plaintiffs could still show that the prison's medical care was insufficient, if their version of the facts is found to be true.

Four of the cases in Center's list were mixed decisions. These included:

Ford v Schering-Plough Corp.: The court found that the ADA does not prohibit unequal insurance coverage for mental and physical conditions. The majority decision found both that the ADA's explicit insurance "safe harbor" provision, which says that nothing in the ADA can be construed to require changes in "bona fide" insurance policies, voids Ford's claim, and that it is not illegal discrimination to differentiate between disabilities when offering insurance benefits as long as the same plan is offered to people with and without disabilities. Alito's concurring opinion supported the "safe harbor" rule but, interestingly enough, also said that the plain definition of "discrimination" likely applies to the mental vs physical health insurance benefits issue. We think this decision is correct in relying on the "safe harbor" provision. Alito did not have to bestir himself to defend the notion that unequal benefits for mental and physical conditions is discriminatory, yet he did.

Motley v New Jersey State Police: Motley, a policeman, was injured in the line of duty and then denied promotions because he couldn't take a physical test. Alito concurred with the majority in clarifying the court's widely-criticized McNemar decision, in light of the Supremes' Cleveland ruling, as follows: It's possible that a person's previous claim to be totally unable to work due to disability might disqualify him/her from claiming job discrimination under the ADA, but such previous claims must be considered in the light of the conflicting definitions of disability in Social Security law vs. the ADA, changes to the person's condition over time, and other factors. This clarification is an improvement. But Alito also supported the majority's conclusion that Motley was probably "playing fast and loose with the court" and perhaps being dishonest, despite a convincing and almost impassioned dissent by another judge, who strongly implied that the other judges played fast and loose with the facts of the case in order to reach that conclusion.

Caruso v Blockbuster-SONY Music Entertainment Centre: Caruso and others alleged that an indoor/outdoor amphitheater violated the ADA Title III requirement that public accommodations be accessible because the facility's wheelchair seating didn't enable people using wheelchairs to see over the heads of standing patrons, and because there was no access to a grassy outdoor seating area. This opinion, authored by Alito, in our view correctly affirmed that the US Department of Justice (DOJ) can't make a substantive change to a rule without subjecting it to public comment. DOJ considered a standing line of sight rule and decided to dodge the issue in formal rulemaking but later issued an "interpretation" calling for standing line of sight. However, in finding that the inaccessible grassy area violated Title III, Alito recognized that ADA equal access provisions are qualitative as well as quantitative; a facility can't refuse to provide access to an open grassy seating area by claiming that people who use wheelchairs would be better off using accessible indoor seating. Alito also expressed his personal opinion that, while DOJ can't just make up rules on its own, a rule requiring standing line of sight "has much to recommend it".

Lapid-Laurel v Zoning Board of Adjustment: This case concerns an application to build a nursing home and assisted living facility in a single-family residential neighborhood. The application was denied. Some disability advocates say that this weakened the Fair Housing Act's requirement that local authorities make reasonable accommodations to ensure that accessible housing is available to people with disabilities. We don't agree. Segregated congregate facilities are harmful to people with disabilities and are never an appropriate response to the shortage of accessible housing. Any defeat of a proposal to build such a facility, for any reason, is always a victory for people with disabilities. We also agree with the Court that an informal "interactive process" of negotiating reasonable accommodations between a Zoning Board and a real estate developer (as opposed to formal on-the-record proceedings) would be inappropriate due to the high potential for corruption. We think developers can request reasonable accommodations on the record and authorities can consider or grant them on the record. However, the opinion, which Alito joined, bought the developer's argument that some people with disabilities can only live in such facilities, and it accepted the notion that building them in a single-family residential neighborhood satisfies the right, established by the Fair Housing Act, of people with disabilities to live in such neighborhoods. We think that provision of the FHA exists to ensure that people with disabilities can live in their own single-family homes, and the opinion contains a disturbing distortion of that principle.

Only one of the 18 Alito disability-related cases that we could evaluate looks to us to be both wrongly decided and unfavorable in all respects:

ADAPT v US Department of Housing and Urban Development: ADAPT sued HUD, alleging that the agency has a consistent policy of failing to investigate housing access complaints or enforce its own regulations or Fair Housing Act requirements. The Court unanimously rejected the suit. The opinion took a very narrow view of the Supreme Court's Chaney decision, which creates a "rebuttable presumption that agency decisions not to enforce [requirements to investigate complaints] are unreviewable" by courts unless Congress put some "guidance" for such reviews in the law. We think there was clear plain language in Section 504 of the Rehabilitation Act and in the Fair Housing Act that provided more than enough "guidance" for review. This decision seems intentionally political in supporting the notion that a federal administration has broad discretion to refuse to enforce laws it doesn't like. However, that isn't only a right-wing notion; the suit was brought during the Clinton Administration. And in fairness, it seems likely that ADAPT could have presented a stronger case and might then have won.

Three of the summaries provided by Center did not provide enough information for us to assess; they involved unpublished opinions that we were not able to read:

Katekovich v Team Rent-A-Car: Center calls this "perhaps the worst disability rights decision associated with Judge Alito." A woman requested extended leave from work and entered a hospital for treatment for depression and sleep disorders. The employer fired her when she tried to return from the leave, in apparent violation of the ADA and the Family and Medical Leave Act. The Court sided with the employer. Center and other advocates allege serious and obvious errors in the opinion's discussion of the law, and say the decision is "grossly unfair" and "extremely troubling".

Dewyer v Temple University: This case involved failure to provide a handicapped parking space as a reasonable accommodation to an employee, and was decided against the person with a disability.

C.M. & R.M. v Board of Education of the Union County Regional High School District: A mixed decision in an IDEA case in which Alito, in a separate opinion, called for limited access to damage claims. The decision was at least partially favorable to a student with a disability, but Center's summary doesn't make clear whether the student's claims were affirmed in whole or in part.

We also read some other decisions in which Alito took part that were widely publicized after his nomination. Alito's supporters and critics both say these opinions are good indicators of his very conservative views.

Chittister v Department of Community and Economic Development: Alito wrote this opinion, which found that Congress did not have the authority to use the 14th. Amendment's Equal Protection Clause to justify abrogating states' Eleventh Amendment "sovereign immunity" when it enacted the Family and Medical Leave Act's requirement that states grant 12 weeks of unpaid leave for personal illness to state employees. Critics have made much of the fact that the Supreme Court overturned this decision; they say it means that Alito is "far to the right" of that Court's majority. In fact, the decision's language is neither original nor unusual. It is very similar to that which the Supremes themselves used in similar cases; it says that requiring the provision of 12 weeks of leave for personal illness as a remedy for sex discrimination is beyond the bounds of what is "congruent and proportional" to the problem. That's at least arguable, though we don't agree with the Supremes' Eleventh Amendment/14th. Amendment decisions in general. But it was reasonable for Alito to assume that he was faithfully following precedent; the big surprise here is not his opinion but that the Supremes overruled it.

United States v Rybar: This is the famous "machine gun" decision. Alito dissented from the majority's opinion that the feds can use the Constitution's Interstate Commerce Clause to outlaw the possession of machine guns even if the gun doesn't cross state lines. The majority opinion uses quite a bit of "out on a limb" reasoning to show that allowing individuals simply to own machine guns has a significant harmful impact on interstate commerce, but that sort of reasoning has been employed for years in a wide variety of Interstate Commerce Clause cases in which oxen on both the left and the right have been gored, and it's far too late to reign it in now. Alito's dissent is notable for its self-righteous, arrogant tone as well as for its argument for dropping 70 years of precedent.

Sabree v Houstoun: The Bazelon Center presented this case as evidence that Alito may favor the reversal of past cases that have found that the federal Medicaid law gives individuals the right to sue to enforce that law's provisions. This would be terrible if true, but we don't see the problem. This case involved several people with mental retardation who sued the state of Pennsylvania for failing to put them into ICFs. We don't like ICFs in the first place; they are segregated congregate living facilities. More to the point, though, the Court ruled in their favor, laying out a very carefully reasoned explanation of how recent Supreme Court decisions supported their position, and Alito concurred in the opinion. His separate one-paragraph concurrence agreed that the majority correctly represented the relevant precedents, but he added that other, unnamed Supreme Court rulings might indicate that the Supremes might move in another direction in the future. This isn't a lot to hang hats on, and, as always, we prefer analyses that rely on facts and logic rather than anxiety and conjecture.

Alito's record shows that he, like John Roberts, usually takes a narrow "conservative" approach to deciding cases. Unlike Roberts, though, he has a disturbing tendency to suddenly abandon this line and, using charged language, fly off into right field, dropping precedents like loose feathers on the way. He may have a right-wing policy agenda that he will promote any way he can--using precedent and careful reasoning when possible, but making up stuff out of whole cloth when necessary. However, we also must say that his disability-related decisions cast him as a rare bird: a federal judge who actually understands the civil rights underpinnings of laws such as the ADA, the Rehabilitation Act, and the Fair Housing Act, and who believes that discrimination on the basis of disability is both wrong and legally unjustifiable. Only time will tell for sure.

As we've reported, the Medicare Modernization Act of 2004 (MMA) is putting an end to Medicaid coverage of most prescription drugs for people who are eligible for both Medicaid and Medicare, and that end comes on January 1, 2006. As you read this in mid-December, it's crunch time for the transition of these "dual eligibles" to the new Medicare Part D prescription drug program.

Many medical service providers, state Medicaid officials, and advocates for low-income people with disabilities and the elderly, have predicted that this will be a disaster. The 6.2 million "dual eligibles" in the US are among the nation's most severely disabled people. About 40% have intellectual or cognitive disabilities, and 61% don't have a high school diploma. This means they are unlikely to understand much, if anything, about the confusing new Part D program or what's about to happen to their Medicaid drug coverage. Over 70% have some significant disability, so most of them need ongoing prescription drug treatment to maintain their ability to function or even to live. On average, each "dual eligible" has 3 or 4 prescriptions, 20 million of which will need to be filled in January 2006 alone. And by definition, all of them are on low, fixed incomes and can't afford to pay much, if anything, for medications.

The big worry is time. It takes a long time to train low-income, uneducated people with intellectual disabilities to use a new system for getting necessary drugs. It takes time for states and the federal government to communicate back and forth about who's eligible for what. It takes time for drug plan providers to get benefit cards out to customers. Yet the feds only began making useful information on the new rules and prescription plans available in October. Come January, hundreds of thousands of people may go into their usual drugstores expecting to fill essential prescriptions, hand over their Medicaid cards, and be told the cards won't work anymore. Or they may proudly produce their new Part D plan cards and be told that the prescriptions they need aren't on their plan's "formulary" (the list of drugs they cover) or that the drugstore isn't in the plan's "network". Or, if they do have the right card, the right plan, the right prescription and the right drugstore, they may be asked for co-payments of $1 or $3 per prescription that they didn't expect and aren't prepared for. Even if 95% of these transitions go smoothly, a 5% failure rate means that 310,000 people will not be able to get their prescriptions filled when they need them in January, and they may get sick, or die, as a result.

How likely is a 5% failure rate? When the feds created the SSI program in 1974, about 3.2 million people with disabilities were transferred from various state welfare programs to SSI. That process had an estimated failure rate between 2% and 5%. There were repeated computer overload crashes as Social Security Administration district offices received 3 times as many questions as they expected. Tens of thousands of people who were dependent on SSI payments to cover food, rent and utilities either did not get their checks at all or got the wrong amount in the first months of the program.

The Center for Medicare and Medicaid Services (CMS) has already made two major errors in its Part D rollout. CMS sent letters to "dual-eligibles" last June to tell them that their Medicaid prescription coverage would end this January. An unknown number of the envelopes were empty, and CMS couldn't find out who didn't get the notice so they could send another copy. And CMS's Medicare and You handbook contains a serious error concerning Part D premiums. People who are eligible for the "Extra Help" low-income subsidy won't have to pay monthly premiums for Part D plans whose premium rate is at or below a "benchmark" value (around $30.00 at the moment for New York State), but if they choose a plan whose premium is higher than the benchmark, they'll have to pay the difference out of their own pockets. However, the CMS handbook says that people who qualify for "Extra Help" won't have to pay any premiums for any plan, and CMS has refused to send out new copies of the handbook to correct the error. (The online version has allegedly been corrected, though we've spotted one apparent error in that version so far. In any case, contrary to popular belief among well-educated middle- and upper-class bureaucrats, most uneducated, low-income elderly and/or disabled Americans do not have computers with online access.)

Over the Thanksgiving holiday, CMS released information about a "contingency plan" to address "dual eligibles" who aren't enrolled in any Part D plan by January. According to CMS, when such folks try to get their meds, the pharmacy will be able to bill a special "single payer" account and fill the prescriptions. This will trigger a rapid "facilitated enrollment" of the person into a single basic "national plan". It's interesting that the only way CMS can come up with to fix this problem is to create a very limited single-payer health insurance program. This is, of course, how all health insurance in the US should be handled. In any case, this plan only addresses "dual eligibles" who weren't automatically enrolled in Part D. We don't know what's in the "national plan" formulary, but it probably won't cover all the drugs that all the "dual eligibles" use, and there's still the problem of people being randomly enrolled in plans that don't meet their needs, so this doesn't guarantee that all "dual eligibles" will get all of their drugs when they need them. CMS was just starting to put this plan in place at the end of November. They needed to find two national contractors to operate this system. Those contractors had to hire staff, furnish offices, and provide software to make the thing work. Pharmacies had to get information on how to do the billing. CMS's plan requires reliable, rapid communication between pharmacies, the two contractors, and CMS. It's pretty unlikely that this will all be up and running smoothly in time to prevent big trouble.

Bills were introduced in both houses of Congress in March to provide a 6-month extension of Medicaid for "dual eligibles" in order to work out the kinks in the system. Those bills have gone nowhere.

So it's critically important for people with disabilities and their advocates to know as much as possible about how this system is supposed to work, and who to contact when it breaks down. Here are the facts:

"Dual eligibles" who are not participating in managed care will automatically and randomly be enrolled in one of several plans that have been deemed suitable for this group. Eleven insurance companies offer such plans in New York State. (Most companies have more than one plan, typically covering different arrays of drugs for different premium rates.) By law, all of these plans must cover at least one drug in each of several approved drug classes. However, by law Part D plans do not cover benzodiazepines (such as Valium and Ativan), prescription vitamins, or over-the-counter medications.

Automatically: If you're a "dual eligible", by now you've probably already been enrolled in one of these plans. Although you were supposed to have been told what plan that is in late October, we don't know if everyone has been notified. We also don't know if all the automatically-enrolled people have received the benefit cards they'll need to show at drugstores beginning in January.

Randomly: There is no effort to ensure that you are enrolled in a plan that covers the drugs you currently take. You may very well now be in a plan that will not cover all of your prescriptions. All the auto-enrollment plans are supposed to have premium rates below the "benchmark" (see above) so "dual eligibles" won't have to pay a monthly premium if they stay in those plans. Fortunately, "dual-eligibles" can change their plans once a month (unlike other Part D participants, who can only do so once a year). Unfortunately, it's hard to see how folks who are just now learning that the plan they were forced into won't cover their meds can get this change done and a new benefit card in their hands before they have to start filling prescriptions in January.

Pharmacy "Networks": Each Part D plan has its own list of pharmacies where you can get prescriptions filled. You must use a pharmacy that's on your plan's list, unless your plan permits mail-order purchases (plans don't have to offer that feature). The feds say they've made it easy for pharmacies to "opt in" to various plan networks, but we don't know how this is going to shake out. If you live in a rural area, it may be tough for you to find a plan that covers the drugs you need and includes a pharmacy within a reasonable distance from your home.

The Medicare regulations require Part D plans to provide special help for people during this transition, but those regulations are very weak. CMS is supposed to have reviewed and approved all of the thousands of plans being offered by now. The plans must let you or your doctor "appeal" if they don't cover a drug you need, but there's no guarantee that you'll win any appeals. CMS "recommends" that plans have "fill first" policies to provide emergency one-time fills of prescriptions that are not in their formularies while you're waiting for an appeal decision, but this is only a recommendation. If a plan doesn't do this, then it must have some other way to "ensure" that the transition doesn't put your health at risk--such as pre-enrollment review and counseling, where you find out what drugs will be covered and get a chance to switch plans if necessary before you're enrolled. This does not happen during the automatic enrollment process; it only may happen if you change plans later. Suppose you've been dropped into a plan that doesn't cover all of your drugs. You pick a different one that appears to have what you need. You may or may not get pre- enrollment counseling from the new plan, and that plan may or may not have emergency fills. If you make an error and the plan doesn't cover all of your meds, won't work at your preferred drugstore, or has too high of a premium, and the plan doesn't have effective transition safeguards, you'll have to wait for a month to change plans again. Yes, such a plan would violate the law--but it's highly unlikely that any effective enforcement action or remedy will occur in time for you to get your medications. So you must make the right choice the first time--and if you aren't sure how to do that, you'd better get some help, and quickly.

By law, Medicaid cannot be used to pay Part D premiums, co-pays, co-insurance costs or deductibles. "Dual eligibles" and people enrolled in the Medicare Savings Program (MSP) are automatically eligible for the "Extra Help" income subsidy. This means they won't have to pay the $250 annual deductible and they won't be subject to the "donut hole"-the 100% of drug costs other Part D participants must pay annually between the first $2,250 and $5,800. If their plan's premium is at or below the "benchmark", these groups also won't have to pay monthly premiums, but they will have to pay any premium amounts above the "benchmark". People in these groups living in medical facilities won't have to pay co-pays for prescriptions. Other "dual-eligibles" will be required to pay $1 for each generic prescription and $3 for each brand-name prescription. Other people in the MSP will pay $2 for generics and $5 for brand- names. Generous pharmacists can waive these co-pays if you can't afford them, but they are not required to do so. Other low-income people outside these two groups may be eligible for some portion of the "Extra Help" subsidy, but they will have to apply for it.

If you used to spend a lot of your own money on medications but won't be doing that now that you have a Part D plan, this could affect your eligibility for food stamps or HUD housing assistance. It's been claimed that you'll still come out ahead, because you'll only lose 30 cents worth of assistance for each dollar in increased income, but that remains to be seen. However, reduced medical spending due to a Part D plan, with or without the "Extra Help" subsidy, won't affect your eligibility for HEAP or SSI.

Employers may opt to reduce or eliminate prescription insurance coverage for employees who are eligible for Medicare Part D plans.

So far everything we've said applies across the US. New York has some additional provisions in place.

First, in New York, if you're a "dual eligible" your enrollment in Part D affects your Medicaid eligibility. This is really sneaky. The federal law doesn't require anybody to participate in Medicare Part D--a big political issue for senior citizens. This includes "dual eligibles", but since the MMA eliminates Medicaid prescription coverage for that group, their choices are either to sign up for Part D or get no drug coverage whatsoever. In New York, "dual eligibles" have a different choice: you can enroll in a Part D plan or you can lose your Medicaid! ALL of it, not just the drug coverage. This applies to all "dual eligibles", including those who have prescription coverage from some other source, such as the Veterans Administration or an employer or union (if you used to work or you're on the Medicaid Buy-In). This creates a potential "catch-22": Some employers are saying they'll discontinue coverage for people who join a Part D plan. And "dual eligibles" in New York who don't join Part D will lose their Medicaid. Such people would be driven to join Part D and lose their private coverage--which will, of course, cost more taxpayer dollars. DOH says they'll make exceptions in these cases--but getting the exception involves dropping out of Part D, letting the state discontinue your Medicaid as a result, and then taking your discontinuation notice to your local DSS office and hoping the workers there have been trained to understand that they're supposed to restart your Medicaid. We don't know how long this "exception" process will take, but don't bet that it will be quick enough to ensure that you won't run out of medications.

Automatic enrollment is also supposed to occur for new "dual eligibles" when they qualify for Medicaid. DOH plans to give CMS a list of new "dual eligibles" entering the Medicaid program each month, and CMS is supposed to return a list of "dual eligibles" that it has automatically enrolled in Part D each month. Note that there is no guarantee that these lists will contain the same names each month--that is, that the process will be done within 30 days. Fortunately, New York will maintain your Medicaid prescription coverage until you are fully enrolled in a Part D plan or for the rest of the calendar year. In fact, NY will maintain your Medicaid drug coverage for the calendar year even if you lose your Medicaid eligibility (and that includes if you don't make your monthly spend-downs). Unfortunately, this may not be much help if you lose your Medicaid in November or December, or if your Part D enrollment process, begun in one of those months, doesn't go smoothly.

Here are some good things that New York State is doing:

If your plan doesn't cover a drug that a doctor says you need, and the plan denies your appeal, NYS Medicaid may pay for it. This was an optional feature in the MMA, and it's very good that New York State has decided to provide it.

NYS Medicaid will also cover medically necessary drugs that are excluded by law from Part D coverage, including benzodiazepines, barbiturates, and prescription vitamins.

NYS Medicaid will continue to cover the medical supplies and over-the-counter medications that it covers now.

If you have a Medicaid "spend-down", you can deduct the costs of Part D premiums, deductibles, co-insurance, and co-pays from your income in order to reach your spend-down amount. If a drug is covered by your Part D plan but you refuse to use the plan for that drug or if you buy it from a provider that's not in the plan's network, Medicaid won't pay for it, but you can deduct that cost from your income for spend-down purposes.

Here is more information, directly from DOH, on Part D and spend-downs. Since some of it appears to conflict with the above paragraph (why would you pay a deductible that can be deducted for your spend- down if having a spend-down means you don't have to pay a deductible?), we're printing it verbatim:

As we went to press the House had passed a budget bill containing big reductions in Medicaid service guarantees. We won't call them "cuts" because overall Medicaid spending will still increase. They're worse than simple spending cuts, because they would permanently reduce the quality of Medicaid coverage for the people who depend on it. The Senate had passed a much less harmful version. The ordinary next step would be for a House-Senate Conference Committee to iron out the differences and produce a bill for both houses to vote on. It's possible that nothing will be done before Congress adjourns for the year. They'd have to "start over" next year, but with much of the groundwork laid, if both houses are determined to get something done that won't delay things much.

The House bill would deeply weaken the benefits of, and limit eligibility for, the Medicaid program. It lets states impose "cost sharing" mechanisms such as premiums and co-payments up to 5% of the gross income of even the poorest individuals and families. People who fail to make these payments could lose their Medicaid. States would have to have provisions to waive these costs for "hardship", but such hardship waivers could be very hard to get in practice. States would be allowed to reduce their benefits packages to so-called "benchmark" levels for just about everybody who doesn't receive long-term care in an institutional setting. "Benchmarks" are defined as packages equivalent to the most popular, or the average-cost, private insurance plan in the state. This would essentially force people with disabilities into institutions in order to get more intensive or specialized medical services. The bill includes a provision to let states provide Home and Community Based Services (HCBS) without getting a Medicaid waiver, something that advocates have long wanted. But this is a sham. Advocates wanted HCBS services to be a simple Medicaid State Plan option instead of a waivered service because it would bring such services under the federal Medicaid law's "statewideness" rules. The House bill guts those rules. States could limit the geographic scope, or the number or types of recipients, of HCBS services, and impose per-capita caps on service amounts, without having to pass the federal scrutiny that is required for such measures today. The House bill also increases the "look back" period for asset transfers to 5 years, closes some other loopholes that enable wealthy people to hide assets in order to qualify for Medicaid, and requires Medicaid to pay a lower wholesale price for medications. The last two provisions, as we've reported previously, don't appear to be harmful. But the rest could severely damage the nation's most cost-effective medical insurance program. Medicaid enjoys vast popular support today. If the program is severely weakened, it could lose that support--and this could be the intention of the right-wing extremists who control the federal government, many of whom have said that they want the government out of the business of funding health care entirely.

The Senate's bill is much better. It does not include significant changes to the Medicaid program that would affect participants--no cost sharing, no reductions in benefits. It does include essentially the same drug pricing reforms as the House bill. It closes some asset transfer loopholes without significantly changing the look back period. It also includes funding for Bush's Money Follows the Person Initiative and to expand Medicaid eligibility for low-income families. It produces most of its savings ($10 billion) by canceling the Medicare Advantage Stabilization Fund. This fund is a form of "corporate welfare" for Medicare HMOs.

Both bills include some temporary expansion of Medicaid and other support services for hurricane survivors in the southern states. There is a need to pay for these unexpected expenses, but it would be quite possible to do so by foregoing Bush's latest $70 billion tax-cut plan rather than by dismembering the Medicaid entitlement.

What's the outlook? Let's look back first. The House bill only passed by 2 votes, at 2:00 on one November morning. The first attempts to pass it failed, as alleged Republican "moderates" held it up, claiming that the draconian cuts to Medicaid and food stamps, and a plan to allow drilling for oil in the Alaskan Wildlife Refuge, were unacceptable. House leaders took the oil drilling out of the bill and made some tiny changes to the food stamp provisions. Most of the alleged "moderates" came back to the fold and put the bill over the top. Later, House leaders smugly claimed that they'd get the drilling and food stamp cuts put back in the House-Senate conference committee.

The Senate passed its bill earlier in November. After looking at the House bill, some Senators introduced a "sense of the Senate" resolution stating that Senate conferees should not accept any conference committee bill that includes the House cuts. That resolution is awaiting a vote on the Senate floor, which may never happen.

Meanwhile, President Bush's "senior advisors" issued a statement that they would "recommend" that the President veto any bill that eliminates the Medicare Stabilization Fund. This was carefully crafted language; so far we don't think Bush himself has actually threatened a veto.

In retrospect, the performance of House Republican "moderates" looked like a dog-and-pony show for public consumption; few if any of them ever seriously intended to stand up to their leadership to defend Medicaid. Some of these same "moderates" also publicly thumped their chests about the inequities of Bush's tax cut plan, most of which benefits the nation's most wealthy people. Don't look for them to block that in the early hours of the morning either, though.

The Senate tends to be more independent than the House, its bill actually expands Medicaid eligibility, and there's a resolution on the floor to prevent the conference committee from gutting it. We should not be fooled by this, though. Several alleged "moderate" Senators have caved into their party's extremist leaders when push came to shove on past debates. Those leaders may be quite frightened by veto threats from the White House. The interpersonal dynamics of the more "collegial" Senate may result in delaying the conference committee's formation until the new year--forcing a "do- over". But they could very well pull together to let the House have its way before Christmas.

The only way that people who care about this can affect the outcome is to convince their Senators, in large numbers, that they know the difference between a dog-and-pony show and real dedication to defending Medicaid, and that difference consists of voting "NO" every time these radical cuts are proposed. Only when these waffle-prone "moderates" understand that they will not continue to be allowed to wear that proud mantle unless they actually dig in their heels and moderate this potential disaster will we be able to count on their ongoing support.

by Adam Cybulski

After six months of investigation Senator Mike Enzi, (R-WY), Chairman of the Senate Health, Education, Labor and Pensions Committee, and Senator Ted Kennedy (D-MA) held a hearing on federal programs that provide incentives for employment of people with disabilities, and released a report entitled Opportunities for Too Few? Oversight of Federal Employment Programs for People with Disabilities. The investigation and subsequent report demonstrated that two programs intended to provide opportunities for people with disabilities to achieve employment and self sufficiency, have instead provided excessive financial gains for a select few, and done little to improve the employment opportunities for most people with disabilities.

First, the Randolph-Sheppard Act, passed in 1936, gave contracting priority to vendors with legal blindness for food service vending in federal buildings. At first this was meant to mean vending machines, but was later amended to include cafeterias, including those on military bases. This effort, despite the fact that it pays out an incredible sum of money ($1.2 billion annually for the military cafeterias alone) has created very few opportunities. According to the report, "In 2004, there were 2,681 licensed blind vendors, which is less than 1% of the approximately 350,000 unemployed people of working age who are legally blind." The report further showed that the vendors often hired other employees to fulfill their contracts: in 2002 of the 7,122 employees hired by the blind vendors, only 615 were people with disabilities; that's less than 9%.

The Wagner-O'Day Act was passed in 1938 and required the federal government to purchase certain commodities from organizations in which 75% of the direct labor were people who were legally blind. It was amended in 1971 by efforts put forth by Senator Jacob Javits to include people with other severe disabilities, and the name was changed to the Javits-Wagner-O'Day Act. When the act was passed, it was considered an accomplishment for people with disabilities to have any job. However the report concluded that the JWOD Act was outmoded as it is "contract-first" and not "people-first". They found it does not mainstream people with disabilities. The statute requires 75% of the contractors' "direct labor" to be peformed by people with disabilities while it poses no requirement for management. This leads to sheltered workshops, where it is in the management's interest not to promote or outplace their workers. The report showed that in 2004, fewer than 6% of people in JWOD jobs were outplaced into competitive and supported employment positions. Furthermore, while many employees actually make less that the federal minimum wage because of their piecework pay structure, CEOs of these organizations are reaping salaries in the range of $350,000 to $700,000 annually.

The report showed that while these laws were well intended, they have failed. As the pie chart here shows [NOTE: chart not available in on-line version], the two programs have created a total of 48,300 jobs for people with disabilities. Compared to the remaining 15 million unemployed people with disabilities in America, this is less than half a percent. Furthermore, the positions these laws created are often in segregated workshops, and not conducive to creating self-sufficiency. The programs have been the victims of abuse and mismanagement for 7 decades, and they need to be drastically reworked. They need to be redesigned to place people first in their considerations and not money, and they need to create incentives for people with disabilities to move into supported and competitive employment positions. If these programs are to continue to give preferential treatment to organizations employing people with disabilities, then they need to stipulate a requirement for employees with disabilities at all levels of employment, including management and executive officers, not just the direct labor.

by Bob E. Ruane (aka Sid)

Since Asperger's Syndrome (AS) was recognized as an official disorder a decade ago, many individuals have been diagnosed with this condition. A great majority of these people have been children. I was an exception to the rule, having been diagnosed with AS as a 33-year-old, in 1995. However, I have had Asperger's all my life--it simply wasn't diagnosed until the mid-90s. Asperger's Syndrome is akin to higher-functioning autism. However, individuals with AS are better able to communicate with others than people who have autism. Still, AS is classified in the autism spectrum, as it is akin to autism in some ways. Some symptoms of AS include:

• Difficulty in interpreting nonverbal cues
• Difficulty in communicating one's wishes nonverbally
• Social interaction may be strained and inappropriate because of the difficulty in mastering the nonverbal world
• Generally good verbal skills, though a person with AS tends to interpret idiomatic expressions literally (e.g. a kid with AS may interpret the expression "forest for the trees" as referring to an actual forest)
• Pedantic, stilted manner of speaking; difficulty in mastering colloquial and slang terms
• May be the target of bullying from peers because of sensitivity to teasing
• Difficulty in motor/coordination skills, especially regarding sports
• Extensive knowledge in one or more specialized, esoteric areas (e.g. trains, cars, baseball, etc.)

Peers often ostracized me, especially during my teen years. Fortunately, I got along fairly well with my peer group from first through sixth grade. Looking back, I attribute this to the relatively open-minded attitude in society back then--the popular music charts were filled with socially conscious songs (e.g., "Walk a Mile in My Shoes", "Black and White", "Keeper of the Castle", "Love Train" and many others). Unfortunately, I entered junior high around the time the "Me" generation began to kick in and the shallow values of Madison Avenue were re-emerging.

I had Asperger's during this entire period, but I was fairly well liked in elementary school because I tried to be friendly and I was a "brain" without being arrogant. However, in junior high, coordination and athletic skills became very important, and needless to say, I was probably the worst football player in the county. In addition, I had transferred to an eight-grade Catholic school, where most of the kids had known each other for six years before I arrived. With the emphasis on sports, Asperger's kids aren't all that popular, to say the least. I can recall missing the ball many a time when it was kicked to me. Athletics is a rite of social bonding for males, so I was usually the odd one out. Unfortunately, in our culture, lack of athletic skills is often equated with effeminacy. The culprit in all this is society's worship of macho values at the expense of all else. In our normalophile culture, the football jock is held up as the epitome of all that is "good" and "normal".

In recent years, my Asperger's has seemingly morphed into a generalized anxiety disorder, as well as non- psychotic paranoia. To keep busy, I take one course per semester, write for online sites like Epinions.com, hike and walk frequently, take part in Team Trivia, and do some occasional volunteer work.

For a child with this condition, try to emphasize his or her strengths, rather than fretting over the kid's poor athletic skills. It is also important to work on the child's social skills, since kids with AS tend to struggle with nonverbal cues. I understand what this is like, because while I was verbally adept, I often could not tell the proverbial forest from the trees. AS kids tend to be regarded as both intelligent and deficient. As a classmate referred to me in third grade, "He's a dummy, but he's smart." There lies the peculiar dilemma of the Asperger's child--body language tends to go "in one ear and out the other", so to speak. It's important to work on these nonverbal issues while trying to utilize the kid's strengths. In addition, it is important to meet with your son or daughter's teacher to see how his or her social adjustment is progressing.

by Joy EarthDancer

For the first time, STIC's Consumer Directed Personal Assistance Program asked for letters nominating an outstanding worker. We realize that many personal assistants (PAs) go far beyond their job requirements, becoming an integral part of consumers' lives. For those of you unacquainted with the sort of work PAs do, duties range from light housekeeping to grocery shopping to complete personal care including bathing, toileting, feeding, and more.

While maintaining anonymity, we want to share with you some of the attributes described in the many letters we received:

"She greets me . . . with the sweetest `Good morning.' There is nothing she won't do for me. She is a true blessing from God."

"He goes well beyond his duties . . . taking SM for overnights, to ball games and picnics, to work out and to proctor a college class . . . spending many more hours per week than are paid for. He treats SM with respect and dignity and as an equal."

"Each morning she arrives with a big smile. My husband waves me off as they go for a walk. If I were a jealous woman, I would be upset. Instead, I am grateful to leave the man I love in such competent hands."

"She willingly and cheerfully tackles every task. She is an industrious self-starter who arrives each day, appraises the situation, and sets about doing her work. I need assistance with even the simplest of tasks and she delicately walks that fine line between helping and making me feel helpless. It is not always comfortable having a stranger come into one's home and be privy to private circumstances and surroundings. She always acts in a professional and respectful manner so that we feel assured that confidentiality will be kept."

And here is an excerpt from the letter describing Broome County's 2005 Outstanding Personal Assistant, Judith Duffek:

"She works nights. She gets me up as she is coming home from her night job and then she comes back to put me to bed before she goes in to work again. She has never been late nor has she failed to show up when expected. Not only does she keep my apartment perfectly clean, but she has brought me flowers from her garden, flowers she has purchased, has given me baked goods, and she leaves me little surprise notes where I will be sure to find them. She is always bubbly and tries to bring a smile to my face, even when I know she is very tired herself. For example, at Easter time she brought her camera and a pair of rabbit ears. I have a wonderful picture of myself as Mrs. Peter Rabbit. My family and I have come to depend on her. She goes out of her way to make my world a brighter place."

These letters describe the nature of the work and the quality of commitment personal assistants bring to it. On a personal note, I feel very fortunate to be associated with the many caring women and men who bring so much good into the world.

In the next newsletter we will tell you about Tioga County's outstanding personal assistant for 2005.