One Voice From a Cast of Millions

by Randy Rosenkranz

I am considered to be 100% disabled because of injuries that I sustained when I was younger, as well as surgeries that ended up causing nerve damage that is permanent. Up until recently I was collecting SSI, which gave me a limited income and no chance of ever getting ahead, let alone keeping up on my bills. But at least I had the medical coverage that I needed; otherwise I do not know what I would have done. Someone was finally nice enough to give me a break and I found employment at the Southern Tier Independence Center. This was the first employer who didn't look down upon my disabilities. They actually seemed to welcome them.

But without having my Medicaid in place when I did, the transition from unemployed to employed would not have occurred nor would I be able to maintain my position at STIC. I am required to see specialists in different areas of the state and I have medications that are very very expensive. It is safe to say that without the Medicaid coverage I would be spending a lot of time in emergency rooms and hospitals where the bills would just keep piling up because I wouldn't be able to pay for them all, and there is no way that I would have any type of normal decent life. If my services were to be cut back or taken away, I am not sure if I would be able to maintain my lifestyle let alone remain employed. I would probably end up having to have the full support of the government once again which I do not wish at all.

Medicaid And Social Security Facts

There's a lot of misinformation being spread by people who want to weaken the nation's safety nets for people with disabilities and senior citizens for ideological reasons. Let's set the record straight:

  • Nationally, 70% of federal long-term care dollars go to nursing homes and other institutions; only 30% goes to community-based supports (ADAPT)
  • It costs New York State, on average, 5 times as much to keep a person in an institution than to provide appropriate supports to the same person in the community (VESID/CIL Deinstitutionalization Cost Savings project)
  • National increase in average annual per person private health insurance percentage change for all US citizens from 2000 to 2003: 12.6% (Kaiser Commission)
  • National increase in average annual percentage change per person in the Medicaid program, 2000 to 2003: 6.9% (Kaiser Commission)
  • In 2004, on average, Medicaid cost 30% less than private insurance for adults and 10% less for children (Kaiser Commission)
  • Date at which Social Security uses interest earned on trust funds to pay benefits: 2018
  • Date at which Social Security uses trust funds assets to pay benefits: 2028
  • Date at which Social Security trustees say Social Security will require general funds: 2043
  • Date at which Congressional Budget Office says Social Security will require general funds: 2053
  • Share of benefits that Social Security trustees say can be paid in 2043 without general revenue finances: 72%
  • Share of benefits that Congressional Budget Office says can be paid in 2053 without general revenues finances: 81%
  • Social Security shortfall over next 75 years as share of gross domestic product (GDP), according to Social Security trustees: 0.7%
  • Social Security shortfall over next 75 years as share of GDP, according to Congressional Budget Office: 0.4%

March 2005


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Bush's Medicaid Plans:
A First Look

The first glimpses of the Bush Administration's much-feared plans to cut Medicaid came this winter. New Health and Human Services Secretary Mike Leavitt made a speech that described Medicaid as "inefficient" and "not meeting its potential". He outlined ideas for cutting Medicaid's growth rate, while noting that total Medicaid spending will continue to rise by about 7% a year. A few days later, President Bush released his proposed Medicaid budget, which closely mirrored Leavitt's speech. It was reported that Bush plans to cut between $45 and $60 billion out of Medicaid spending over ten years. In the information we have, only about $35 billion in cuts is accounted for. We don't know where the rest will come from.

Some of these proposals don't appear to harm Medicaid recipients at all. Others clearly will. We don't have the full story, and the Bush Administration is capable of fudging the facts, or even outright lying, on policy issues (as they have done with the alleged Social Security "crisis", see Medicaid and Social Security Facts). But here's how it looks to us:

Changing how Medicaid pays for prescriptions

Currently Medicare pays a lower rate for prescription drugs than Medicaid does. As best we can tell, the difference is that Medicare pays actual market wholesale prices, but Medicaid uses a "list price" that's not related to market prices. Leavitt and Bush say the feds can save $15 billion over ten years by changing this. We don't see any harm to people with disabilities here.

Closing the "asset transfer" loophole

The details are vague on this. It appears to target people with high incomes who make fake transfers of assets to relatives in order to qualify for Medicaid long-term care. The expected savings are $4.5 billion over ten years. If the changes only affect people running this scam, we don't see a problem. However, many people with middle-class incomes have been forced into grinding poverty simply to get long-term care services, including homecare. This is wrong. The right answer is to let them pay a premium to buy into Medicaid. We don't know if this proposal also affects "spousal impoverishment" and "spousal refusal" provisions (see Pataki's Budget).

Eliminating "double dipping" and other alleged "abuses" by states

States can get a larger share of federal Medicaid funds than they are strictly entitled to in several ways. One way is to project a certain amount of state Medicaid spending and collect the federal matching share on it, then make providers, including local governments and private agencies, "kick back" some of the Medicaid funds they receive. The kickback includes both state and federal money, so the state ends up spending less than it told the feds it would. Bush expects to save $11.9 billion by ending such practices.

This is a controversial issue. One of Governor Pataki's favorite Medicaid cut proposals has been to impose kickbacks like these on Medicaid providers. This reduces availability of Medicaid services, and is clearly a bad thing. On the other hand, if the feds stop this, New York will get less federal Medicaid money-also a bad thing. Note that these practices are not illegal. NY gets the lowest federal Medicaid matching share in the US (50%), even though we have a higher percentage of poor citizens than most other states. Most states get 55% or more; some get over 70%. As a result, NY uses these kickbacks more than any other state. It would be grossly unfair for the feds to stop this without also increasing our Medicaid match.

Case Management Cuts

Bush wants to reduce the Medicaid match for "targeted case management" services to 50%. He expects this to save $4 billion over ten years. It doesn't look like this would affect New York since our matching rate is already at 50%.

Block Grants?

Leavitt stated emphatically that "There will be no block grant system for Medicaid." However, in other remarks he suggested that "optional" Medicaid services may be cut or capped. Few details were given, but some advocates say this can only mean block grants. The only optional services mentioned so far extend some Medicaid coverage to families or children whose income is above the usual eligibility cut-off. However, there are other optional services, including personal care and services, such as private duty nursing and podiatry, that Governor Pataki keeps trying to remove from our state plan.

As we went to press there was little support in either party for Bush's proposals. Members of the National Governors' Association strongly opposed any measures that would cut Medicaid funds to states. And some leading Republicans in Congress were heard to say that Bush's budget was "dead on arrival". This does not mean that at the end of the day, the federal government won't cut Medicaid. Bush's don't tax/still spend policies, and the war in Iraq, will continue to force cuts in all discretionary federal spending as long as they continue. However, it does appear at this early date that the most dangerous and frightening Medicaid-cut scenarios may be avoided.

Courts Watch

Spector v Norwegian Cruise Line

On February 28, the Supreme Court heard arguments in this case involving cruise ship access.

Spector booked a Caribbean cruise out of Houston, TX on Norwegian Cruise Line. He requested accessible facilities and was told he would get them. However, when he got onboard, he found a step between his stateroom and his bathroom, another step up into the shower, doors on public restrooms that opened outward, making it impossible for him to get inside, and various steps and obstructions that made it impossible for him to get into or use facilities of the ship's restaurants, entertainment venues and other public areas. The cruise line does have accessible ships, but the ship Spector boarded was an older one that had not been modified. In addition, the company charges extra for accessible rooms, does not permit people with disabilities to cruise alone, and requires them to have a doctor's note to travel, among other outrages.

Spector and others sued under Title III of the ADA, which requires public accommodations to be accessible when readily achievable. The 5th. Circuit ruled against him, while in a similar case the 11th. Circuit ruled that cruise ships must be accessible. Both sides urged the Supreme Court to resolve the conflict.

Norwegian Cruise Line contends that the ADA doesn't apply to cruise ships because they are not registered in the US and thus aren't subject to US domestic law. There is ample precedent for this view in maritime law. Other major players in the cruise industry have filed a brief in support of Norwegian, even though their track records for accessibility are fairly good.

However, the case isn't quite open-and-shut. For one thing, Norwegian Cruise Line, despite its name, has its main offices in Florida and for practical purposes can be considered an American company. For another, the company's contract with customers explicitly states that any disputes will be resolved under US law. And during the Super Bowl festivities in Jacksonville, FL in February, several cruise lines docked ships in the harbor and publicized them as "floating hotels" for the overflow crowd. Hotels are clearly subject to the ADA.

Several advocacy groups and the Bush Administration's Department of Transportation have signed on in support of Spector. We should get the court's ruling on this sometime this spring.

IDEA Case on Burden of Proof

The Supreme Court has taken on a long-running case concerning who has the burden of proof in disputes over Individual Education Plans under the Individuals with Disabilities Education Act (IDEA).

According to the Washington Post, In 1997 Brian Schaffer was a 7th. grader with attention deficit disorder in Maryland. When he moved from primary to middle school, his parents objected to the large class sizes in the school he first enrolled in. The school district offered the opportunity to attend a different middle school with smaller class sizes. The parents rejected this offer and enrolled him in a private school instead. Then they went to a fair hearing to force the school district to pay the tuition. We don't have enough information to discuss the merits of Shaffer's case.

IDEA requires public school districts to pay private school tuition if they can't come up with appropriate special education services themselves. However, there has long been confusion over whether the district has the burden for proving it offered adequate services, or the parents have the burden for proving that the services were inadequate.

Shaffer won in federal District Court, but the school district appealed and won in the 5th. Circuit Court of Appeals. Shaffer appealed to the Supremes. During this process the Clinton Administration supported Shaffer. The Bush Administration hasn't said what position it will take.

Bush Tries Again with Appointments

With a new Senate in session, President Bush has trotted out 20 of his previously-rejected federal court appointees for reconsideration. Among them are William Pryor and Terence Boyle. Both are noted for extreme "states' rights" positions in opposition to federal civil rights law, including the ADA. As a federal district judge, Boyle's decisions have been overturned over 150 times by the 4th. Circuit Court of Appeals, to which Bush wants him appointed. This is an unusually high number of reversals, and many of them have been for "plain error", which suggests that the man is not only vicious but incompetent. Pryor is being proposed for the 11th. Circuit.

The Senate Judiciary Committee planned hearings on both appointees for March. New Democratic Senate Minority Leader Harry Reid said that Senate Democrats are not likely to treat previously-rejected candidates differently simply because Bush has resubmitted them. Reid also promised to filibuster any such appointments that reach the Senate floor. If no Democrats defect, such filibusters can't be broken and the appointments won't go through. Republican Senate Majority Leader Bill Frist has threatened to change the Senate rules to prohibit filibusters of judicial nominees. Reid vowed that if this happens, the Senate Democrats will bring all work in the Senate to a halt. Several Republican Senators also opposed Frist's idea.

Feds Fix Medicare Glitches

Medicare Prescription Plans and "Dual Eligibles"

It appears that the federal Centers for Medicare and Medicaid Services (CMS) have fixed the coverage gap for "dual eligibles" in Medicare's new "Part D" prescription drug program.

"Dual eligibles" are people who are eligible for both Medicare and Medicaid. They usually have congenital disabilities and get Medicaid because they are low-income and eligible for SSI, and Medicare because they worked at one time and get SSDI, or are beneficiaries of a family member's Social Security coverage.

As we've reported, the Medicare Modernization Act will force all "dual eligibles" into the Part D program. Unlike NY Medicaid today, Part D is not guaranteed to cover every prescription, and most people will pay big deductibles and monthly premiums for those it will cover. States are forbidden to use Medicaid to pay Medicare Part D deductibles and co-pays. (Note that if Pataki gets his "preferred drug" and co-pay plans approved, NY Medicaid will also no longer cover all prescriptions and will impose co-pays on those it does cover.)

This was bad enough, but there was a "glitch" in the law: "Dual eligibles" would lose Medicaid prescription coverage on January 1, 2006, but would not automatically be enrolled in a Part D plan until May 2006. Millions of "dual eligibles" have intellectual and/or cognitive disabilities and live in poverty, and it was unlikely that they would voluntarily enroll in Part D before they lost their Medicaid. They would go months without medications, which could kill them.

Advocates deluged CMS with complaints, and in January CMS released final rules that appear to correct the problem. Here's what they say they're doing:

All "dual eligibles" will automatically be given the Medicare Low Income Subsidy. This subsidy applies to people with incomes under 135% of the poverty level and assets under $6,000 for individuals or $9,000 for couples. People in this category don't have to pay premiums or deductibles for Part D coverage. It's not clear that any person with a disability who is on the Medicaid Buy-In would actually be "dual eligible", since SSDI/Medicare ends when a person starts making significant money, but presumably, people on the Buy-In would not need or get the subsidy. CMS says it will work with states during the first half of 2005 to find every "dual eligible" and enroll them in the subsidy. We doubt they can find everybody that fast, and New York should provide safety-net coverage with state dollars for those who don't get enrolled.

In early fall, CMS will notify "dual eligibles", and organizations that assist them, about the transition to Medicare and offer guidance on how they can enroll in a plan of their choice. Once again, we think it's unlikely that CMS will reach everybody in a timely manner.

"Dual eligibles", like other Part D recipients, can choose the standard government plan or a plan offered by the private sector during the 11/15/05 - 12/31/05 open enrollment period. Somehow, though, CMS has interpreted the law to let it automatically enroll "dual eligibles" before their Medicaid coverage ends. It looks like they'll do this early on, but "dual eligibles" will be able to change the plan they're put into during this period. Once most people are in a plan, they can only change it at a specific time once a year. However, "dual eligibles" will be allowed to change their plan on a monthly basis--at least for the first year. All this is intended to ensure that the automatic-enrollment safety measure doesn't deprive "dual eligibles" of a real choice of plans.

CMS reminds states that they can still use federal Medicaid dollars to pay for drugs that a "dual eligible" person's Part D plan doesn't cover. This is optional for states, though, and it's not clear what New York will do.

The Final IDEA

The smoke has cleared and we have a new Individuals with Disabilities Education Act (IDEA). What's in it, and what can children with disabilities and their parents expect in coming years?


First, fewer children will be classified as having disabilities for the wrong reasons. The new law says that a simple discrepancy between a child's reading or expressive abilities and the "norm" for his or her age is not necessarily a disability. Most such discrepancies are caused by poor teaching and/or neglectful parenting. School districts dominated by white teachers and administrators have used such discrepancies to label excessive numbers of impoverished black and Hispanic children "disabled" and send them to the "special class". These kids' skills can be brought up to speed with proper early intervention. Now, school districts can spend up to 15% of their IDEA money to work with them so they'll never have to be labeled as disabled. We don't see anything in the law that requires school districts to re-evaluate these kids and de-classify them--but there's nothing to prevent it, either. Re-evaluations can be done whenever a parent or school official thinks it's necessary. The law doesn't say that such a discrepancy can't ever be used to classify a child as disabled, it says that it can't be the only reason to do so and that schools don't have to consider such discrepancies when making classification decisions.


Individual Education Plans (IEPs) are going to change a lot.

There is no more requirement that short-term benchmarks and objectives be set for all children with disabilities. This makes sense because the simple fact that a child has a disability doesn't mean s/he learns differently, or more slowly, than a child without a disability. The federal No Child Left Behind Act (NCLB) requires schools to improve evaluation for all students. In most cases, NCLB and IDEA will ensure that schools treat children whose disabilities don't involve intellectual functioning as well as they do nondisabled kids in terms of academic progress monitoring. IDEA still requires short-term objectives and benchmarks for children with significant intellectual disabilities--and they are the most likely to need them. And, nothing in IDEA forbids an IEP from using short-term objectives; if parents and advocates fight for them, they can be included for any child. We suggest that you do not insist that your child be treated differently when it comes to academics unless it's absolutely necessary. If you do, it's much more likely that the child's program will be "dumbed down" to ensure that "progress" is measured, than that anything extra will be done to help him/her keep up with the other kids.

The IEP Team must take into account any need for "positive behavioral supports" for children with challenging behaviors. It is absolutely essential that parents and teachers frankly and fully discuss the child's behavioral issues and needs, if any, and get them on record in the IEP. This is because the new IDEA's disciplinary procedures aren't as forgiving as they used to be.

We have seen claims by advocacy organizations that there is no longer a requirement to consider assistive technology in the IEP. This is wrong; the requirement is still there.

Welcome new language has been added that requires IEP Teams to--wonder of wonders--actually address the child's academic needs--not just behavioral, developmental, or support issues. The language requiring braille instruction in most cases for blind children is also there, and the idea that children with hearing loss need opportunities for direct communication with peers at school has been added--perhaps easing access to deaf-only schools when appropriate.

The IEP process has been streamlined. There aren't many hard and fast rules on how often IEP meetings must occur, who must attend, and how they are structured.

IEP meetings must occur at least once a year, and schools must have the student's individual program in place when the school year begins. Parents or the school may call a meeting at any time if something changes. There are also new requirements to ensure better coordination when a child moves from one district to another, or when s/he transitions from pre-school to school.

The team must include: the child's parents; at least one regular education teacher of the child if s/he is in, or may be in, a regular class; at least one special education teacher, preferably one who works with the child; a school district representative who provides, or supervises those who provide, special ed services; someone who is qualified to interpret evaluation results (may be the same person as one of the other school members); anyone else who has knowledge or expertise about the child or his/her needs and services whom the parent or school district wishes to invite; and the child "where appropriate". There is no longer a formal "parent advocate". Districts could still bring in other parent "ringers" to support the district line--but they wouldn't have an official "advocate" role, so they probably won't bother. Parents remain free to bring their own advocates, though. The law says that additional attendees are "at the discretion of the parent or the agency". We interpret this to mean that neither side can keep out any person who is qualified to be there.

Any IEP team member can be excused from any meeting, with the written consent of the parents. School members must provide written input in such cases. There are rules that ordinarily, unless excused, the child's regular education teacher should take part in all aspects of planning and review. Members can also attend by phone rather than in person, with written parental consent.

States can apply to participate in a pilot program to demonstrate 3-year IEPs. Such IEPs would require written parental consent to implement. We don't know if New York State plans to apply.

Conflict Resolution

The new IDEA offers mediation and binding arbitration processes in addition to fair hearings for resolving complaints. It also imposes a 2-year "statute of limitations" for filing complaints. Such complaints must be in writing and contain specific information, and states must provide a model form to help parents properly prepare a complaint. Some sources say that if a fair hearing is sought, the parents are "required" to attend a pre-hearing meeting with members of the IEP team. That is not strictly accurate. A school district must hold such a meeting unless both the district and the parents agree to waive it. Parents can avoid such a meeting if they opt for mediation as well. A district might use such a meeting to intimidate parents, but it's our impression that if they haven't already scared the parents away from filing a formal complaint, one more meeting won't change anything. We hope districts will understand that and not waste everybody's time.

There's a big change to rules concerning a child's behavior. Schools can suspend children with disabilities, or move them to an "alternate setting", for up to 10 days regardless of the behavior's cause, if that's what would happen to a nondisabled child who behaved the same way. Kids with disabilities can't be suspended for longer than 10 days; they must be "alternately placed" and continue to get appropriate special ed services. Unless the behavior involved weapons, drugs, or serious bodily injury, such long-term moves can only be made if the behavior was not caused by (a "manifestation" of) the disability, or by the school's failure to implement the IEP. Within 10 school days of a decision to make such a move, the IEP Team must decide if the behavior was due to the disability. If it was, the Team can return the child to the previous setting, and/or revise his/her behavioral program, and/or order a new setting. Our reading of the law suggests that the child may not actually be moved until after the "manifestation determination", unless the behavior involved weapons, drugs, or serious bodily injury. Some sources say the burden of proof of a "manifestation" has been shifted from schools to parents, but we don't see that. The big change we see is that the move can occur immediately after the Team finds that the behavior was not disability-related, and the child will stay in the new setting during any appeals process. This is why it's vital to get behavioral issues and positive behavioral support plans into the IEP. It will reduce the chances that school officials will move your child for the wrong reasons.

Transition Services

There is no longer any mention of transition planning beginning at age 14. Instead, the IEP that will be in effect when the child turns 16 must address transition needs, including employment and/or continuing education and/or independent living issues. It looks like the Senate's proposal to beef up the Voc Rehab Act's transition services was not included in the final bill.


We were glad to see that House language that forbids schools to require kids with disabilities to take prescription drugs as a condition of getting special ed services made it into the final bill. New language also ensures that schools can't label a child as having a disability and force him/her into special ed if parents don't consent. There is specific language allowing (but not requiring) districts to use IDEA money to develop better services for children with autism.

The law allows states to apply to participate in a "paperwork reduction" pilot program. We think New York might apply, but we don't know what, if any effect this would have. At present, the state's record on enforcement of IDEA couldn't get much worse; perhaps if procedures were simplified, there might be better enforcement.

All the new IDEA requirements discussed here take effect on July 1, 2005. It's not clear that either the feds or the state will have final regulations in place by that date. Still, it's a good idea to plan ahead and assume the new rules will be in effect when your kids go to school this fall.

Good Budget Things

The state budget news isn't all bad.

Governor Pataki has proposed $1 million to fund the new Nursing Facility Transition and Diversion Medicaid waiver in fiscal year 2005-06. These funds are to set up the waiver's Regional Resource Development Centers (RRDCs), which will be similar to the RRDCs used for the state's Traumatic Brain Injury waiver. $1 million isn't a full year of funding, but by the time the budget is approved, much of the fiscal year will already have passed.

The Governor is calling for up to 4 demonstration projects to provide enhanced rates to Certified Home Health Agencies to serve people with "more complex needs" for up to 60 days after discharge from a hospital or nursing home. The idea here is to encourage early releases from institutions. There are also provisions to pay for respite services or to pay family members for personal care services. The latter is an attempt to cushion the income loss that results when people have to quit working or go part-time to care for family members with disabilities.

There are three proposals in the Governor's budget to expand in-home supports for people with disabilities who aren't eligible for Medicaid. The Expanded In-Home Services for the Elderly Program would have its budget doubled, from $25 to $50 million. The Community Services for the Elderly program would get a $250,000 increase. Both of these programs provide non-medical assistance to elderly people, such as personal care and help with shopping and housekeeping. The Governor has also established a new "Access to Home" program, with $10 million for access modifications to homes and apartments of people with low or moderate incomes. Access to Home does not require legislative approval; the program has already started.

Some proposals for OMRDD services are also positive. Included are funding increases for important waiver services such as Service Coordination and Residential and Day Habilitation, which will address not only cost-of-living raises but increasing health benefits costs; measures to reduce sheltered workshop funding and provide incentives for workshop operators to transition people to real jobs, and increased funds for local Community Service Planning. Many OMRDD Medicaid Waiver services provided to new recipients will not require a county share of funding.

These are all good things. Please note, however, that they don't begin to compensate for what would be lost if the Governor's Medicaid service cuts and program changes are approved.

Is HUD Under Demolition?

by Darlene Dickinson

Well folks, if you think the housing shortage for low and moderate income people with disabilities is bad now it seems that the worst is yet to come. The Bush Administration's budget proposals for Fiscal Year (FY) 2005 have clearly aimed the proverbial wrecking ball squarely at the department of Housing and Urban Development (HUD). And, Congress has cut HUD Section 8 rent subsidy program funds for FY 2005. I'm sure most of you are aware of the crucial importance of HUD programs for people with disabilities. If you're a bit out of the housing loop, here's a quick refresher.

First, the majority of people served by Centers for Independent Living (CILs) get less than 30% of the national median income. In other words, they're poor. Second, demand for affordable housing far exceeds the available supply. Third, the availability of affordable housing that is also accessible to people with disabilities is practically non-existent. As a result, waiting lists for accessible HUD subsidized apartments are long. You can expect to wait up to two years for an accessible apartment in the Greater Binghamton area, and longer in larger urban areas across the nation.

While logic would seem to dictate increased funding for HUD, two programs that are critical to keeping people with disabilities in the community are facing substantial cuts. On January 21, 2005, David Vargas, HUD's director of housing voucher programs, issued a letter to all Public Housing Authorities (PHAs) stating that Section 8 funding is being cut by 4%. Vargas explained that the congressional appropriation of $13.4 billion for Section 8 housing vouchers fell short of the $13.9 billion that HUD had calculated to renew all existing vouchers. What's more, Congress has required that housing agencies must stay within their allocations for the entire year.

The 4% cut to Section 8 has left PHAs with hard choices. Some individuals and families may lose their vouchers altogether while others will incur higher costs to stay in the program. PHAs with open Section 8 programs are likely to close their waiting lists, which means they won't accept any new applications. Those that do accept new applicants are likely to lower voucher payment amounts, resulting in fewer and poorer housing options for tenants. Other possible results may include limiting portability of vouchers and shorter time frames for new voucher holders to find suitable housing.

To find out what this means for folks in the Greater Binghamton area, I spoke with Mike Atchie, Systems Director of Planning, Housing and Community Development at Binghamton Housing Authority (BHA). "There are two factors at play in the changes that HUD made," Atchie said. The first is that BHA is no longer given a specific allocation of units to subsidize. In the past, HUD allocated funds to subsidize 437 units in the City of Binghamton. Now, the program is budget-based. In other words, BHA gets a lump sum of money. From that, they've had to work backwards, dividing the average cost of one subsidy into the pot of money they've been given. Atchie has found that BHA can issue 400 Section 8 vouchers in 2005. When asked if BHA has had to discontinue any vouchers for families already in the program, he said that they had some idea that cuts were coming and opted not to bring new clients onto the program as others left. As a result, no families or individuals lost their vouchers. The overall impact, says Atchie, is that the waiting list will stay closed for an additional six months and will accept applications for a shorter period of time. Of BHA's 400 vouchers, Atchie estimates that 40 to 50 percent are held by people with disabilities. As you can see, cutting Section 8 has had, and will continue to have, a significant impact on whether people with disabilities will obtain affordable, accessible housing, or remain in institutions and/or substandard housing that does not meet their needs.

President Bush has also proposed big changes to another key HUD program that affects people with disabilities in many ways. Each year, HUD disburses billions of dollars to states, counties, cities and other entities in Community Development Block Grants (CDBG). CDBG funds a broad scope of projects and programs, many of which benefit people with disabilities. In FY 2004, HUD disbursed $3.5 billion in CDBG monies. Why are these programs important to people with disabilities? I went to HUD's website to see how New York State was spending its allocation of CDBG funds. Here's what I found.

The latest figures were for FY 2003. In that year NY spent $20.9 million on projects such as demolishing derelict buildings, rehabilitating existing single and multi-family homes and constructing new housing units. $16.6 million was allocated for public improvement projects such as street and sidewalk repairs and new curb cuts. CILs got $400,000 for various projects, including $23,000 to STIC from the City of Binghamton for a Housing Coordinator to assist people leaving nursing homes to obtain appropriate housing and offer information to Binghamton residents with disabilities who need housing assistance.

In addition, the federal report listed the following figures:

$5.9 million nationally went to Fair Housing programs to assist people who have been discriminated against, including people with disabilities, when applying for rental units. $54,572.12 paid security deposits for people who would otherwise be precluded from renting because they couldn't put up the first month's rent and security. $2.3 million went for removing architectural barriers that limit access for people with disabilities to housing, public buildings, etc. $10.6 million went to providers of services to people with disabilities and $41.6 million to programs that benefit seniors.

In FY 2005 HUD has $4.7 dollars in CDBG funding. Bush has proposed to cut this by 50%, and the changes don't stop there. The President also wants to move the CDBG program from HUD to the Department of Commerce. This could mean less emphasis on housing-related services in future years.

Does this spell the beginning of the end for HUD? That remains to be seen. However, if current trends continue, people with disabilities could lose many of the programs and services that they have counted on to live independently in the community. The question now is: will we allow this to happen? Will you?

MISCC Stalls over Disputed Reports

We have received few details on the recent progress of the NYS Most Integrated Setting Coordinating Council (MISCC) over the last few months.

As we predicted, MISCC members allied with the disability community raised serious objections to some draft committee reports. They said the Data Committee had seriously over-represented the extent of true community-based services for people with disabilities in the state, and underrepresented the numbers of people who want to leave institutions and/or are underserved. They also objected that recommendations concerning a single point of entry for needs assessment weren't strong enough, and continued to cite the failure to address housing issues.

When they brought these concerns to MISCC Chairman Tom Maul, he suggested that they meet with each of the committee chairs to try to get changes made. The last we heard, they were doing so and it was possible that modified draft reports would result.

Meanwhile, it appeared that Governor Pataki and his Department of Health were moving forward to design dangerous sweeping changes to NY's long-term care programs on their own, bypassing the MISCC and its legislated role to provide a consumer-influenced venue for such planning.

The New York Association on Independent Living
New York State Independent Living Council

2005 Disability Priority Agenda
by Association and Council Members

(This abridged version of the Agenda omits issues extensively covered elsewhere in this newsletter and briefly summarizes other issues to save space.)

Centers for Independent Living Funding Priorities
  • Restore the 2004-05 cut of $536,600 to the Centers for Independent Living (CILs)

  • Provide an additional $5 million to the CIL state appropriation

Despite a 35% growth in demand for our services, CILs have not received an increase in state funding for the last five years. In fact, our funds were cut by 5%, totaling $536,600, in 2004-05.

CILs assist individuals of all ages with disabilities in transitioning from or avoiding unwanted institutional placement. From October 1, 2001 through September 30, 2003, 15 CILs diverted 1,216 people from institutional placements and transitioned 281 from institutions into the community. Using the most conservative figures, and deducting the entire budgets of the centers involved, VESID and the CILs calculate that these efforts saved NY taxpayers $110,508,283. That amount is approximately ten times the total state allocation for the centers.
Health Care Priorities
  • Expand coverage of NY's Elderly Pharmaceutical Assistance Program, EPIC, to people with disabilities under the age of 65

Too often, people with disabilities who are only insured by Medicare must choose between buying food or buying the prescription drugs they need. Expanding the EPIC benefit to cover people with disabilities will ensure that people with disabilities will have access to the medications they need without having to compromise their health and well-being in other ways.

  • Pass Timothy's Law for mental health parity

According to the National Institute of Mental Health, more than 50 million American adults are diagnosed with a mental disorder. One in five children have behavioral and/or emotional symptoms resulting from psychiatric disabilities or mental health difficulties. Without mental health services, these problems may result in school failure, chemical dependency, family disruption, criminal activity, violence, and/or suicide.

In New York State, insurers currently limit the number of inpatient and outpatient mental health visits per year and charge higher deductibles, co-payments, and/or co-insurance for mental health and chemical dependency treatment than they do for all other health care services. As a result, families are often left with the cruel choice between depleting their financial resources to access only the sporadic treatment that they can afford, or relinquishing custody of their child to the state in order to access publicly funded services.

New Yorkers overwhelmingly support parity of mental and physical health coverage by insurance providers. In a recent Zogby poll, 81% of New Yorkers said they were willing to pay the estimated $1.26 more per month for full insurance coverage for mental and chemical dependency health care needs.
Americans with Disabilities Act (ADA) Priorities
  • Incorporate Titles II and III of the ADA into NYS Human Rights Law

  • Pass legislation to waive the state's sovereign immunity to ADA and Section 504 discrimination suits in federal court

In Alabama v Garrett ( 2001), the US Supreme Court ruled that individual states cannot be sued for money damages in federal court for discriminating against persons with disabilities in violation of the ADA. This decision immediately ended effective protection against employment discrimination against people with disabilities by state governments, and has led to other court decisions that have seriously weakened the protections afforded under ADA Title II, which mandates that state and local governments must provide equal access to their facilities, programs, services and employment opportunities.

By passing legislation to waive New York State's sovereign immunity to ADA and Section 504 discrimination suits in federal court, lawmakers would be mandating equal treatment of New Yorkers with disabilities in employment and access to government programs and services. In conjunction with legislation to waive the state's sovereign immunity from federal lawsuits, disability rights advocates continue to ask legislators to put the protections defined by Titles II and III of the ADA into state law. This would guarantee the civil rights of New Yorkers with disabilities in the event that the Supreme Court should strike down the rest of the ADA.

Without this legislation, our state is sending the message that it's okay for New York to discriminate against persons with disabilities. Sometimes inaction speaks louder than words!
Housing Priorities
As the housing market grows increasingly tight, people with disabilities are finding themselves left out in the cold. Obtaining affordable, accessible housing is difficult under the best conditions; however, the rapid growth in demand for housing has made it all but impossible for people of low income to find places they can afford, notwithstanding the need for units that meet their accessibility needs. A report entitled Priced Out in 2002, published by the Technical Assistance Collaborative, documented that the average rent in NY state ranged from 120% of SSI income to more than 160% in the Metropolitan New York City area.

  • Incorporate housing provisions of Section 504 of the Rehabilitation Act of 1973 into NYS law

Section 504 of the Rehabilitation Act of 1973 mandates that 5% of newly constructed, federally assisted homes be accessible to individuals with mobility impairments and that 2% be accessible to individuals with sensory impairments. In addition, Section 504 requires that these units be proactively marketed to eligible individuals with disabilities. Despite these provisions, advocates have noted that some single and multi-family projects that have received federal monies through the NYS Division of Housing and Community Renewal, local participating jurisdictions, and the Housing Finance Agency are not in compliance with Section 504.Even in circumstances where these federally funded projects have been in architectural compliance, developers have not marketed the accessible units to eligible individuals with disabilities. Legislation to incorporate Section 504 into state law would greatly assist in the enforcement of these provisions in NY.

  • Create a Housing Trust Fund for people with disabilities

Due to the extreme crises in affordable, accessible housing for people with disabilities, a housing trust fund with dedicated funds needs to be established in NY. The purpose of the trust fund would be to assist people with disabilities of low and moderate income with obtaining and maintaining accessible housing through grants, loans and other housing supports and services. The trust fund would be used for rental subsidies, down payment and closing costs assistance, moderate rehabilitation, accessibility modifications, assistive technology, and ongoing maintenance.

  • Pass legislation to ban source of income payment discrimination in housing

With affordable and accessible housing in such short supply, landlords must be prohibited from refusing to rent units to prospective tenants based solely on the source of their income. Many landlords specify in their ads for rental units that they will not accept SSI, SSDI, public assistance or HUD vouchers as sources of rent payment. This form of discrimination cannot be allowed to continue!

  • Create a NYS registry of affordable accessible housing

At present, there is no central database listing the availability, location and cost of affordable, accessible housing throughout New York State. Creating a centralized registry would not only ease the arduous task of finding affordable, accessible places to live for people with disabilities, it would also assist landlords in finding reliable tenants who tend to stay in accessible apartments for many years. A pilot project to develop a voluntary registry is being funded by the NYS Developmental Disabilities Planning Council with the Center for Independence of the Disabled in New York. This project will provide the foundation for a mandatory system.

A registry of affordable, accessible housing for people with disabilities already exists in Massachusetts. Additional information on that state's housing registry can be found at:

Election Reform
  • Ensure full and equitable implementation of the Help America Vote Act (HAVA) in NY

  • Eliminate the full-face ballot requirement in NY election law

Accessibility surveys conducted by CILs throughout the state have revealed that as few as 10% of polling sites are fully accessible to voters with disabilities in many counties. Additionally, people who are blind/visually impaired, cognitively impaired, or who have significant mobility disabilities are prevented from casting private, independent ballots because existing voting machines are not accessible to them.

In order for NY to fully comply with the mandates of HAVA, all waivers of accessibility issued by the state to inaccessible polling sites must be revoked and objective accessibility surveys following accepted standards must be conducted by CILs with appropriate compensation. HAVA also requires the replacement of voting machines that do not allow people with disabilities to vote independently. Unfortunately, NY's use of the full face ballot precludes the purchase of the most accessible, technologically refined voting machines. Therefore, we are calling for the elimination of the full face ballot, which widens the range of possible voting machines that the state can purchase with HAVA funds to include those that are more accessible to people with disabilities and less costly for taxpayers.
Education Priorities
  • Provide $3,000,000 to the centers to expand the CIL Transition Projects statewide

Significant gaps in academic and life achievement persist between students with disabilities and their non-disabled peers. Without services to support successful transitions from high school to adult life, young adults with disabilities will almost certainly face lives of dependency on SSI and other benefit programs at the expense of NYS taxpayers.

Both the federal Individuals with Disabilities Education Act (IDEA) and NY's education law recognize the importance of transition services that help students with disabilities acquire the skills they need to live successfully in the "real world". In a pilot project, CILs partnered with schools to provide vital links to the adult world of higher education, vocational training, and work. As a result, the students who participated in the program enjoyed many successes and greatly improved their odds of becoming self-sufficient, taxpaying citizens. Unfortunately, the pilot project will no longer receive state funding after June 30, 2005, which means that school-to-life transition services will end. Continued funding for these types of programs makes good economic sense for New York State. The taxes paid by working people with disabilities are a very good return on the state's initial investment in transition services. Therefore, it is only common sense to provide the necessary funding to continue the programs established by the CILs and to offer incentives to schools that partner with CILs to provide services.

Pataki's Budget:
An Old Game with New Rules?

As perennial as the daffodils about to rise from the moist spring earth, is the dismal round of budget squabbling in New York State. Here we are again. Haven't we been here before?
Health Care
This year Governor Pataki wants to cut between $2.5 and $3 billion out of Medicaid spending for fiscal year 2005-06. When it comes to spending cuts, not much new is proposed. However, there are some very dangerous new program changes in his budget bill.

Medicaid Spending Cuts

There's another plan to end or reduce Medicaid State Plan private duty nursing, audiology, dentistry, podiatry and psychology services. (What's new is that some of the services would be available at public clinics only, not from private providers. These clinics don't exist in all localities and have long waiting lists. This could violate federal Medicaid "statewideness" rules.) It's always a mistake to cut preventive services, because it increases the state's costs for acute emergency services. A Pataki staffer told advocates that their figures prove it will be cheaper to pay emergency rooms and hospitals to treat people with massive infections than to pay dentists to cure the abscesses that led to them, but would not provide the figures.

Last year's proposal to increase co-payments on prescription drugs--from $.50 to $1 for generics, and from $1 to $3 for brand-names--is back, along with the "preferred drug" list, with last year's exceptions for AIDS drugs, antipsychotics and antidepressants. As was the case last year, there is not enough consumer oversight of this plan and it would probably be cheaper for the state just to buy drugs in bulk for Medicaid recipients.

Pataki again wants continued or increased Medicaid kickback "assessments" on hospitals and some homecare providers--a kind of "double dipping" that the Bush Administration plans to eliminate.

Back for a return engagement are two proposals to limit Medicaid eligibility. Pataki wants to extend the eligibility "lookback" period to 5 years, to keep people from transferring assets in order to qualify for Medicaid. This requires a federal waiver, but since Bush has targeted this issue also, approval would likely come quickly. And Pataki again wants to end "spousal refusal". Ordinarily when determining Medicaid eligibility, your and your spouse's income and assets are taken into account. But it's different with Medicaid long-term care. If you're trying to get into a nursing home, some of your spouse's income and assets aren't considered, so that when you move out your spouse will still have enough to live on. This is the "spousal impoverishment" provision. There is no such provision if you want homecare. Instead, there is a "spousal refusal" option; your spouse can formally refuse to contribute to your support. Then only your income is considered for figuring eligibility, and both of you can afford a home for you to get the care in. It's just a different way to do what "spousal impoverishment" does for people in nursing homes. But Pataki wants to eliminate "spousal refusal" without touching "spousal impoverishment". This will lead spouses of people with disabilities to push them into more expensive nursing homes or get "divorces of convenience". As we said last year, the best way to handle long-term care for people of more than modest means is to let them pay a premium to buy into Medicaid.

There's a plan to charge co-pays, ranging from $25 to $215 a month, to families of children receiving Early Intervention services. This isn't as drastic as last year's EI proposal, but it's still unaffordable for very-low-income families, so it's another case of increasing long-term costs by cutting preventive programs. Short-term EI services reduce people with congenital disabilities' need for expensive life-long assistance.

A new twist this year is a plan to gut "Family Health Plus", which provides limited benefits to families with incomes somewhat above the poverty line who can't get Medicaid or employer-based coverage. Pataki wants to reduce the benefits package by eliminating mental health services and homecare, and impose co-pays, and he wants to make it unavailable to people who work for employers of 50 or more people whether they offer medical benefits or not. A lot of kids with disabilities get their only medical and homecare services through the program. Last year the Legislature agreed to cuts of this nature.

Medicaid Program Changes

Aside from Family Health Plus, we already know from the last several years of budget infighting that the Legislature is not inclined to accept very much, if any, of this. So why is Pataki trotting it out yet again? It's because this year he thinks he has two new secret weapons.

One is a decision by the state's highest court that may affect the balance of power in budgeting. Allegedly the court made it illegal for the Legislature to "rewrite" the Governor's budget as a substitute for his proposal. They can tinker with monetary amounts but they can't change "program" language that controls how the money is spent. Early on the Legislature issued dire warnings that it would have no choice but to pass Pataki's budget as is or reject it entirely and let him try again, thereby causing a government shutdown. As we went to press this rhetoric had faded with no public agreement between Pataki, Assembly Speaker Silver and Senate Majority Leader Bruno on what the decision actually means, but negotiations were moving along.

The other "secret weapon" is more dangerous. Pataki's proposal includes a plan to gradually shift the county share of Medicaid costs to the state over 3 years. But the proposal states that this cost-shifting won't occur unless the full budget package is enacted. Pataki wants county executives, many of whom are hopping mad over the growing bite that Medicaid takes out of their budgets, to pressure the Legislature to cave in. The county execs have gotten a lot of sympathetic press. What they fail to recognize is that the fact that Medicaid is a huge part of their budgets means it's also a huge part of their local economies. In some counties healthcare is the top industry; in most it's a major employer. If Medicaid services are cut, thousands of jobs will be lost. The counties' tax bases will be eroded, perhaps leaving them no further ahead than they were before the cuts. This is apparent even to some Republicans, including our own Senator Libous, who has made this point publicly. It's important for the state to take Medicaid off the counties' shoulders, but it would be self-destructive to do so by cutting Medicaid services.

Last year we reported that the Governor proposed to combine most of Medicaid (excluding OMRDD's huge chunk) into "one big waiver". There is no such proposal in the Governor's budget this year. However, plans for this idea are still going forward behind the scenes, and Pataki did make a proposal that, if passed, would let him drastically change New York's Medicaid system without any opportunity for approval by our elected representatives.

There is a real need to reform NY's Medicaid long-term care system to focus on less expensive integrated community-based services. Last year the Governor's Working Group on Health Care issued recommendations to achieve this. There are good ideas here, including a single-point-of-entry for eligibility and need assessments, expanded private long-term-care insurance options, and incentives for downsizing and closing nursing homes. However, not everything in this plan is good. And Pataki has never backed up the plan's best ideas with concrete proposals, but he has enthusiastically promoted its more destructive provisions.

The plan pushes the idea of putting people with significant disabilities into managed care and adding long-term care to managed care plans. The state's Medicaid Managed Care Bill of Rights requires minimum levels of service from managed care plans for people with disabilities, and a choice of plans. So far, outside New York City virtually no managed care providers offer plans that meet these requirements, because the state won't pay a reasonable rate for them. That won't change, because Pataki's budget freezes Medicaid managed care rates at this year's levels. The only way the Working Group proposals to enroll large numbers of people with disabilities in managed care can work is if the state greatly increases rates or substantially weakens the Managed Care Bill of Rights. Which do you think Pataki is more likely to support?

"Ah," you say, "but legislators will never buy that, and anyway, it's not in the Governor's budget proposal." Well, it's not there specifically-but his proposal would give broad authority to the Department of Health to apply for waivers and make other changes to the state Medicaid program without legislative approval. This is the most dangerous thing in Pataki's budget this year. It will have far more lasting impact than any specific service cuts-because if he gets his way, in future years he won't have to run things like eliminating services or eligibility changes by the Legislature any more. He could enact his entire "one big waiver" plan all by himself. Even if disability advocates don't win any other battle this year, they must win this one.
Other Matters
In addition to Medicaid, Pataki has targeted the other usual suspects again this year.

He wants to cut community-based services for people with mental disabilities by $3.9 million.

He wants to cut $2 million out of VESID case services.

He'd like to transfer control of intensive supported employment services for people with developmental disabilities from VESID to OMRDD. This is probably not even legal; federal law says the State Vocational Rehabilitation Agency must administer such funds. In any case, our view is that the supported employment system needs to be fully consolidated within VESID without regard to the diagnoses of its clientele, not further fragmented and subjected to turf wars.

He's revived his proposal to move VESID out of the State Education Department (SED) and into the Department of Labor (DOL). While SED hasn't done a great job for people with disabilities, this would be a big mistake for two reasons. SED has a wealth of experience in dealing with vocational training and education for people with disabilities. DOL has no such experience, and its primary role is to provide services to employers, not to assist people to get or keep jobs. Under SED, appointments to the NY State Independent Living Council (NYSILC), which oversees planning and budgeting for some Independent Living programs, including STIC's Systems Advocacy project, are shielded from political maneuvering by the Board of Regents. At DOL, Pataki would have direct appointment authority and the ability to hamstring NYSILC's highly successful advocacy efforts, which have included opposing efforts to water down building code access requirements and to violate the voting rights of citizens with disabilities.

Pataki also wants to merge the state's Office of Advocate for People with Disabilities with the Commission on Quality of Care (CQC). The CQC, while never an enthusiastic supporter of community integration, has exposed some of the worst abuses in state institutions. The CQC's independence is enforced by its role as the state administrator for various federal protection and advocacy programs for people with disabilities. The tiny Advocate's Office provides a meager information and technical assistance service, focused largely on assistive technology, and is entirely subject to the Governor's control. Such a merger would likely reduce the CQC's ability to promote and protect the civil rights of New Yorkers with disabilities.

While there are some good proposals for the OMRDD budget (see Good Budget Things), much of it represents more of the same institutional bias. OMRDD continues to call its closed system of large segregated group homes and day programs "community based", which is false, and which may result in grossly inflated assessments of the state's support for real community integration for people with disabilities when the MISCC report is released. Further, OMRDD plans to build more group homes for children as its cruel response to parents' cries for help with kids with significant developmental disabilities. OMRDD projects that 76 people will move out of developmental centers and 30 people will move out of more "specialized" large institutions. However, most of these people will move into smaller institutions--group homes--not into the community. And there will be 40 new "slots" for people in "specialized" facilities.

Power Wheelchairs Back on the Road

A while back CMS announced a crackdown on power wheelchair purchases by Medicare, citing "fraud and abuse". They began strictly enforcing the standard that only people who can't get out of bed or a chair themselves and who can't use a manual wheelchair could get a power chair. The result was that people who can't walk more than a few feet safely and don't have the strength to operate a manual chair couldn't get power chairs. This drastic change caused many adaptive equipment providers to stop selling power chairs or go out of business entirely.

There was a major outcry from disability advocates, and CMS started looking at changing the rules again. In February they released a new draft rule that should ease the situation for Medicare recipients. The rule lets people get power chairs if they're needed to enable a person to do any of several "mobility related activities of daily living", such as eating, grooming, or using the toilet.

However, this is not yet ideal. Still in the rules is a provision that only people whose disabilities are so severe that they need a power chair to get around in their homes are eligible. This excludes lots of people who can get around a small apartment that's fully accessible for them, but can't walk long distances safely and don't have the stamina to use a manual chair for long periods of time. With power chairs, such people could leave the house to run errands and get jobs. They could reduce their need for personal assistance services and contribute to the cost of the services they need. Advocates pointed this out to CMS and hope the final rule will remove this restriction.

Note that this applies to Medicare only; nothing here will change what NYS Medicaid has done over the last year to slow down approvals for power wheelchairs for Medicaid-eligible people.


Jobs on Ice

by Sue Ruff

Ever feel like a character in a Jack London novel? Picture crawling into a snow bank and giving up? Winter, especially this one, seems to demand our endurance and survival skills as we try to shovel walks, start cars, maneuver through frozen slush, or find enough layers of clothes to stay warm at the bus stop. For people who are unemployed, the harsh winter symbolizes hard times, poverty, rejection, or depression. For some of our readers, being unemployed has surrounded them with layers of ice.

It is easy for those of us who are employed to say, "Stay hopeful--spring is coming." Or, to say to them, "Maybe with the new jobs coming to Owego there will be something you can do--or maybe there will be work for other employers as dollars come into the area."

Technology has changed the way many businesses recruit employees. Filling out applications online has become commonplace. Not knowing how decisions are made (or by whom), has cast another layer of ice around those who submit computerized applications and receive no calls for interviews. We all know that having a network--knowing people, being able to meet and communicate with those who can hire--is the best way to get an opportunity to convince an employer, "I can do this job, please give me a chance."

This past week I saw co-workers (some with disabilities, most without) cheer one another on at a competition for people who serve customers at a store. The mutual respect, affection, admiration, and camaraderie as workers tested their skills were wonderful to see.

At another time this past week, I watched several people reach out with deep love and respect as they offered support and tenderness to a disabled co-worker, who had lost a parent to cancer.

The relationships I observed were made possible because two employers had opened their doors to hiring people with disabilities.

Work defines us. It is our chance to participate and give our talents, skills, and dedication. But it is the relationships with our co-workers that can become the sun that melts the ice, the hope that becomes spring.

Are you an employer? How do people get hired at your business? Is your human resource department in the business of making or melting ice?

What is the Million Dollar Message?

by Amber George

The disability community has been in an uproar about the newly released film Million Dollar Baby. I was pretty sure it would make my blood boil but I knew I had to see what Clint Eastwood was up to now.

For those of you who have not wasted your money, I must provide some plot details to put my outrage in perspective. Million Dollar Baby is about a legendary boxing trainer named Frankie (played by Eastwood, who directed and produced the film), who reluctantly takes on an enthusiastic fighter named Maggie (Hilary Swank). The first half of the movie is the story of a female boxer compelled to become a champ in a non-traditional female sport. She trains and works doubly hard because not only is she female, but an older woman determined to be the best. As Maggie escalates up the boxing championship ladder, fighting women and often knocking them out in the first round, we see Frankie eventually grows very fond of her.

Despite my disinterest in boxing, the movie held my interest up until the last 30 minutes. It is in the last half-hour that the hyped-up "surprise ending" is delivered. Contrary to other movie critics, I plan to reveal the ending. We must think critically about what this film means for people with disabilities. Nondisabled people may interpret it as the truth for all people with disabilities.

A crucial scene occurs during one of Maggie and Frank's bonding sessions on the road. Maggie told Frankie about her father's dog that had lost the strength in its hind legs. The dog was unable to walk without dragging its legs behind. Maggie and her brother laughed at the dog as it struggled to move itself forward. When her father neared his death, realizing that no one would care for his pet, he decided to take the dog for a car ride. When her dad returned he no longer had the dog. This foreshadows the end of the story.

Maggie fights her final opponent in the boxing championship of all championships. Her opponent is a rough woman who is known to fight dirty. Maggie seems to be winning after several rounds, and the bell sounds the end of another round. At this point, Maggie's opponent launches a crushing blow to the back of her head. As Maggie dramatically falls to the floor, she lands hard on the resting stool, contorting and breaking her neck.

Next we see Maggie lying pitifully in a hospital bed preparing to tell Frankie the horrific news, that she's a "complete C1 C2" and will be "frozen" like this for the rest of her life. She can only breathe with the use of a trachea tube and cannot be moved without assistance. As Maggie endures the prolonged agony of rehab in what appears to be an upscale nursing home, she develops severe pressure sores on her arms and legs. One of these wounds becomes so life threatening that her leg must be amputated. Through Maggie's anguish Frankie is by her side, taking care of all the important issues and keeping her company.

After a couple scenes, Maggie is quiet and distant. She appears to be depressed and fearful of what may come next in her life. Eventually she voices to Frankie that she does not want to live this way. She reminisces about her fame and fortune as a boxer and has decided that life is not worth living without being able to fulfill her dreams. In a melodramatic scene, Maggie asks Frankie to do for her what her dad did for his dog.

The rest of the movie focuses on Frankie's moral and ethical dilemma; should he fulfill Maggie's wish and kill her or should he allow her to live with the pain and suffering of paralysis? By this time, I couldn't decide whether I wanted to vomit or get up and slap every one of the sympathetic blubbering sobbing nondisabled people in the audience. I could hear the pounding of my heart through all the sniffles and nose blowing.

In the end, Frankie decides to "assist" Maggie with her final wishes. In the middle of the night, he enters the facility, says his good-byes, shuts off the ventilator to induce sleepiness, and then injects her with enough adrenaline to put her into a death sleep. Maggie obliges and quietly slips away.

This isn't the way I'd like to die. In reality, Maggie would suffocate when the ventilator was turned off. As the adrenaline entered her bloodstream she would experience a series of heart attacks, until her heart finally stopped beating. Does this seem like a peaceful death to you?

Well-known film critic Roger Ebert said this film presents the murder/suicide of a disabled person as a moment of "clarity and truth" providing the viewer with the "deepest secrets of life and death". He proclaimed the film the best of the year! All the top-notch critics agreed that Million Dollar Baby should be bronzed as a masterpiece. Sure, why not? It presents euthanasia as the best solution for disabled people. After all, isn't it better to be dead than disabled? This is what society believes and this is what they've come to expect. I think the moviegoers I saw leaving the theater were saddened but relieved that this woman was taken out. They thought Eastwood's character was heroic and selfless. Maggie lived a fulfilling life before so it's ok if she dies now. Little did my fellow moviegoers know that Eastwood has a negative reputation in the national disability community. He's quite open about his opposition to some of the protections afforded by the ADA.

As mayor of Carmel, CA, he fought requirements for curb cuts and other access improvements to the city. In 1997, after refusing to put accessible bathrooms in his $6.7 million resort, he was sued for violating the ADA. This marked the beginning of Eastwood's crusade to weaken the law. He campaigned for legislative changes to protect big businesses from being sued. He demanded that businesses be notified 90 days before suit is filed. In 2000 he testified before Congress in support of this legislation. Doesn't he understand that public places should have been accessible starting way back in the early 90s? It is indisputable. It's the law! Eastwood lost his case and was required to make his resort accessible. Boy that must have made him angry, eh? What would have happened had Maggie asked to spend some of her recuperation time at his resort? Would he have made the restrooms accessible? It makes you stop and wonder. After his long battle against the ADA, what was it that fueled his cinematic motivation?

In January, Hillary Swank won the 2005 Golden Globe for best actress in a drama. As she accepted her award she thanked her castmates and gushed over their talent for making this the best film of the year. As I watched her walk off the stage in her elegantly flowing gown I wondered if she truly understands why a newly injured person would want to take his or her life.

In the movie no one bothered to mention that newly injured people are often without hope because of the fierce discrimination and dehumanization they must contend with. I am certain that a spinal cord injury is a traumatic, life-changing event. Not only must the person grieve the loss of former abilities; s/he is also forced to live in a world that does not value people with disabilities. I can see how some people at first may decide that death may be a better choice. But I can't understand how, after only a few months of rehab and then a very painful amputation, Maggie was not supported and encouraged to wait it out to see how things would heal. I cannot believe no one came to her side, looked her squarely in the eye, and said, "You are a valuable person and you must live. Life may seem bad now, but things will be brighter once you get through this difficult time. We need you to live." Not every spinal cord injured person lives each day with excruciating pain. Not every such person feels he or she would be better off dead. This movie does not represent every disabled person's outlook on life! As expected, however, this movie manipulates the audience to believe that once disabled, there is nothing but death to look forward to.

You probably wonder why a nondisabled person like myself would feel compelled to, perhaps controversially, express my displeasure at this ignorant and bigoted film. Plain and simple: it makes me angry! I can't imagine living my life without some of the people I've met over the years. Spinal cord injured or not, they are of extreme value to me. I would never support anyone dying because they have a disability. The logic of this film tells me that if I become disabled tomorrow, I should expect that someone who loves and cares for me should step up to the plate and put me out of my misery. This is the status quo, the requisite, and the norm. Henceforth, I am disabled, I have no future, and I have nothing left of me except a wheelchair and a trachea tube. My life is over. Does this not sound absurd? The frightening fact remains that in Hollywood there are no other feature films that come close to combating the strong message this film portrays about people with disabilities.

Eastwood's message undermines all the work we've done to undo prejudice against people with disabilities. While I know that this article is much like preaching to the choir, I feel it is important to shed light upon this in a consequential way. Our society must not sentimentalize the killing of a person with a disability. It puts us all in mortal danger.


Housing Comes to the Town of Union

by Kim Gulick

Home sweet home...Unless you can't find one...

We can help you get there!

Introducing the Town of Union CDBG Housing Program:

Currently, there is a large housing shortage for people with disabilities in Broome County. There simply are not enough accessible apartments to meet the needs of people with disabilities in our community.


Have you had trouble finding housing that is accessible and affordable?

Do you need assistance with obtaining information about rent subsidies?

Would you like to know how to access information about Section 8 and other housing programs?

Are you a landlord looking for more information on how to attract reliable and long-term tenants?

Would you like more information on how to make your existing rental apartment accessible?

If you answered yes to any of these questions, then this is the program for you!

The mission of this program is to assist individuals with disabilities in finding affordable, accessible housing within the Town of Union. We seek to enable people to live independently in their own homes and in the community.

Who's eligible?

  • People with disabilities who currently live or would like to live in the Town of Union.

  • Rental property owners who have apartments in the Town of Union.

This program is made available through a Community Development Block Grant (CDBG) from the Town of Union. STIC is the recipient of the grant and the provider of the services.

People deserve to live in the most integrated setting possible--in their own homes, and in their own communities.

For further information or any questions call me, STIC's Town of Union Housing Coordinator, Kim Gulick, at (607) 724-2111 (voice/TTY). I will be more than happy to assist you.

TBI Neurobehavioral Program

We are proud to announce that STIC is the new home of the NYS TBI Neurobehavioral Program. This statewide program, under the direction of internationally-recognized TBI authority Dr. Tim Feeney, is funded by the NYS Department of Health. It provides consultation and support to family members, service providers, and people with disabilities to enable individuals with traumatic brain injuries to address challenging behavioral issues and remain in the community.

If you live anywhere in New York State and this sounds like something you could use, contact your TBI Waiver Service Coordinator or RRDC for more information.

TBI Support Group Returns

by Randy Rosenkranz

This is to let all interested parties become aware of a support group for adults with brain injury. The Adult Brain Injury Support Group meets monthly at STIC, 24 Prospect Ave. in Binghamton, in the fourth floor conference room. We hope that you will be able to attend, and look forward to seeing all interested parties there. If there are any questions please feel free to contact Beth or Randy at (607) 724-2111 (voice/TTY).


Spring 2005
Issue No. 78