AccessAbility

by Maria Dibble

The post-9-11 news from our state government has been full of stories about cutting costs and holding spending increases down, but the reality is that our leaders have no interest at all in saving money. They want to look like they are acting responsibly to keep the budget in check, but it's all appearance and no substance. Our officials are fond of telling us that there must be "personal responsibility" for our actions, but they do not apply this concept to themselves.

Why this accusation?

Overwhelming evidence proves that segregated programs for people with disabilities (including all institutions and sheltered workshops) are far more expensive than their equally safe and more effective integrated community-based alternatives, yet funding streams and policies continue to support and actually encourage segregation, as well as programs that keep people on benefits rather than providing incentives for them to work.

For years we pushed for a Medicaid Buy-In. Advocates presented irrefutable evidence that over time it would save money and actually bring in revenues by putting people to work. Yet it took a massive and concerted advocacy effort to force its adoption (the key word here being "force").

How many times over the last eight years have you heard about the need to get people back to work? Yet recently the state Comptroller (who is running for Governor) and the Governor's Division of the Budget forced VESID to put out a contract application for supported employment services that originally offered an inadequate one-shot maximum of between $4,900 and $8,400 per person (depending on the disability) to assist people with disabilities to get jobs, while segregated alternatives for the same people cost from 20% to 200% more, every year of their lives, with no productive end result. Advocates had to fight to stop this.

Now let me bring this down to the local level. Did you know that the actual cost of keeping someone at Broome Developmental Center is approximately $861,000 per year? No, that's not a typo. My guess is the cost is so high because so few people live there anymore but they still have to cover all the infrastructure costs. Yet they make one excuse after another for why they can't afford to integrate people into the community, or provide consumers with assistive technology or home modifications. The entire budget for technology and home modifications for the six counties served by the Broome DDSO is $30,000. The average total cost, for all services, of supporting a person in the community using Medicaid Home and Community-Based Services waivers is only $64,744 a year (see "NYS Disability Service Costs Revised").

For the last two years, advocates have been asking for a new Medicaid waiver for people with physical disabilities, similar to those in Kansas and other states, which would assist people to leave nursing homes and other institutions, and provide adequate supports for them in the community. Our officials claim they need time to study the situation, gather and evaluate data, and other such bureaucratic doublespeak. They ignore two simple but extremely pertinent facts: By law, waiver costs cannot exceed those of institutional care. And, in the overwhelming majority of cases, waivers cost less than keeping people imprisoned in segregated environments. They need only look to New York's very successful traumatic brain injury waiver for proof. So, I ask you, what is there to study? We already have all the information we need to move ahead.

We need a comprehensive statewide plan that incorporates policies and funding streams to reverse this grossly expensive institutional bias in favor of more cost-effective, efficient and humane integrated alternatives. We don't need more money in our budget, we just need to reallocate our resources in a responsible manner. There is more than enough money to go around. All we are missing is the will and desire to make the necessary changes.

The evidence presented here seems clear. Maintaining the status quo, or in some cases moving backward in time to more oppressive and discriminatory policies and practices, will not save money. It will, in fact, cost more. So what is behind these apparently irrational policies? Consider the following possibilities and decide for yourselves:

Could it be malice and vindictiveness? Harsh and biting words I know, but how else can we explain policies and laws that actually favor segregation, the more expensive choice, over integration, the less expensive and more empowering option? When we have demonstrated repeatedly that our proposals would actually save tens of millions of dollars and we are ignored and dismissed, what are we supposed to think? Those of us who have experienced discrimination, imprisonment in institutions and a myriad of barriers thrown in our paths when we want to live inclusive lives in our communities, can only think that someone is trying to hold us back, possibly to retaliate against us for our rising activism and persistent demands.

Could it be self interest? Certainly many of our officials get big campaign donations from people whose interests are best served by maintaining a policy of segregation. For example, one of Governor Pataki's regular campaign donors was the person who owns the Northeast Center for Special Care, an institution cited for numerous instances of malfeasance, abuse, and violating patients' rights. Yet they are still in business. Then there are the adult home industry lobbyists who were appointed to high positions in the Department of Health, where they looked the other way while hundreds of people with disabilities were neglected and abused, and died, in huge human warehouses in New York City, and the state's nursing home monitoring system fell apart.

Or is it simply incompetence? At STIC, we regularly examine our finances and create long-range plans for fund and program development to grow our agency and meet the needs of consumers in a fiscally sound manner. We consider the entire budget and the effects of each program or funding source on the whole, when allocating funds. To do otherwise would be irresponsible and our auditors would raise a red flag. Yet year after year, our officials keep proposing to cut this or that disability service line item while ignoring the fact that such cuts will force increased spending elsewhere that will exceed the amounts "saved". They resist following a long-range strategy that makes small investments now to reap great savings later. Cuts are highly visible and popular with some people, while the increased costs they create down the road aren't so easy to see. Politicians and other officials only care about how they can make things look today, two months before another election.

We, the citizens who pay their salaries and fund these programs, are the ones who suffer because of their bad decisions, incompetence or lack of interest in seeing things change. It's time to coin a new phrase, "Government Responsibility". See you at the polls this November.

(edited from an obituary provided by Justice for All)

Justin Dart, Jr., a prominent leader in the national disability rights movement for three decades, died on June 21, 2002, at the age of 71, of complications of post-polio syndrome and congestive heart failure.

Dart was born on August 29, 1930. His grandfather was the founder of the Walgreen's drugstore chain, his father a successful business executive, his mother a matron of the American avant garde. Dart contracted polio in 1948, which left him a wheelchair user. He earned bachelor's and master's degrees in political science and history from the University of Houston and wanted to be a teacher, but the university withheld his teaching certificate because of his disability.

Dart went into business in 1956, building successful companies in Mexico and Japan. In Japan, where he met his wife Yoshiko, he took people with severe disabilities out of institutions, gave them paying jobs, and organized some of them into Japan's first wheelchair basketball team.

He visited Vietnam in 1966 to investigate the status of rehabilitation in that war-torn country. At a rehabilitation center for children with polio, Dart found squalid conditions where children were left on concrete floors to starve. A dying young girl took his hand and looked into his eyes. "That scene," he wrote, "is burned forever in my soul. For the first time in my life I understood the reality of evil, and that I was a part of that reality." The Darts terminated their business interests and dedicated themselves to the cause of human and disability rights.

Dart became chair of the Texas Governor's Committee for Persons with Disabilities. His work there became a pattern for what was to follow: extensive meetings with the grassroots, followed by a call for the radical empowerment of people with disabilities, followed by tireless advocacy until victory was won.

In 1981, President Reagan appointed Dart vice-chairman of the National Council on Disability. Dart and the Council drafted a policy that called for national civil rights legislation to end the centuries-old discrimination against people with disabilities.

In 1986, Dart was appointed to head the federal Rehabilitation Services Administration. He called for radical changes, and for including people with disabilities in every aspect of designing, implementing, and monitoring rehabilitation programs. Resisted by the bureaucracy, Dart dropped a bombshell when, at a public Congressional hearing, he called RSA "a vast, inflexible federal system which, like the society it represents, still contains a significant portion of individuals who have not yet overcome obsolete, paternalistic attitudes about disability." Dart was asked to resign, but remained a supporter of both Presidents Reagan and Bush. In 1989, he was appointed chair of the President's Committee on Employment of People with Disabilities.

Dart is best known for his work on the Americans with Disabilities Act. In 1988, he was appointed co-chair of the Congressional Task Force on the Rights and Empowerment of Americans with Disabilities. The Darts toured the country at their own expense, visiting every state, holding public forums attended by more than 30,000 people, and promoting the ADA. Dart also met extensively with members of Congress, as well as President Bush and his Cabinet. The ADA was signed into law on July 26, 1990.

Next, Dart threw his energy into the fight for universal health care. Later, he was among the first to identify the coming backlash against disability rights, and resigned all his positions to become "a full-time citizen soldier in the trenches of justice." With the conservative Republican Congress elected in 1994 calling for amending or repealing the ADA and the Individuals with Disabilities Education Act, Dart co-founded Justice for All, which he called "a SWAT team" to beat back those attacks. Dart tirelessly traveled, gave speeches, testified, held conference calls and meetings, and criticized media distortions of the ADA. Both laws were saved. Without his leadership, the outcome might have been entirely different.

In 1996, Dart said the Republican Party, of which he was a lifelong member, was in "retreat from Thomas Jefferson, Abraham Lincoln democracy." In a personally difficult "decision of conscience," he campaigned for Bill Clinton. Once again, the Darts toured the country, telling people to "get into politics as if your life depended on it. It does."

Dart sustained a series of heart attacks in 1997 that curtailed his ability to travel. He continued to lobby for the rights of people with disabilities, attending rallies, demonstrations and public hearings. Toward the end of his life, he worked on a political manifesto on "the revolution of empowerment." In its conclusion, he urged his "Beloved colleagues in struggle, listen to the heart of this old soldier. Our lives, our children's lives, the quality of the lives of billions in future generations hangs in the balance. I cry out to you from the depths of my being. Humanity needs you! Lead! Lead! Lead the revolution of empowerment!"

New Federal Disability Office

In July the federal Health and Human Services Department (HHS) announced creation of a new Office on Disability "to oversee the coordination, development and implementation of programs and special initiatives within HHS that impact people with disabilities."

More fallout from Bush's "New Freedom Initiative", it is unclear what powers this office would have to bring real change to federal disability policy. It is described as a way to "centralize" HHS's implementation of its plans under that initiative. Since most of those plans consist of offering pilot project grant funds for stuff that we already know works, it may have little effect. It does not appear to be the grand consolidation of all federal disability-related programs and services under one roof envisioned in ADAPT's "Administration on People with Significant Disabilities" recommendation that we reported on last year (see AccessAbility, Fall 2001).

Margaret Giannini, a former federal administrator in the orthotics/prosthetics and disability research fields, was appointed to head the office, which should open this fall.

Bush Supports Mental Health Parity

As part of his ongoing "New Freedom Initiative" for federal disability policy, President Bush announced in May that he would support mental health parity legislation.

Due primarily to outmoded attitudes about the nature of mental illness and the effectiveness of medical treatments for it, many employer-based health insurance plans provide less coverage for mental illnesses than for physical ones. The federal Mental Health Parity Act of 1996 required that when an employer offers mental health coverage, annual or lifetime spending caps for that coverage must not be lower than those for physical health services. However, the law still allowed caps on the number of therapy sessions and length of hospital stays, higher co-payments and deductibles, and tougher definitions of "medical necessity", for mental health services. The result of this huge deliberately-created loophole is that the law has done virtually nothing to improve access to mental health coverage.

No specific legislation has been proposed yet. Bush's announcement stated that he planned to work with the sponsors of the 1996 bill on the issue. His press release did say that "The legislation must prevent plans from applying less generous treatment or financial limitations on mental health benefits than are imposed on medical or surgical benefits." This at least seems to imply that he would be in favor of removing the service caps loophole.

Federal Caregiver Respite Bill

Last spring S. 2489, the "Lifespan Respite Care Act of 2002" was introduced in the US Senate. In July a bipartisan group of 35 members of the House of Representatives introduced it in that body as HR. 5241. "Lifespan" respite is defined as, "coordinated systems of accessible, community-based respite care services for all caregivers of individuals regardless of the individual's age, race, ethnicity or special need." The information that we have about the bill is vague, but it appears that it would provide funding to states for a variety of respite care initiatives. These would include: development of state and local lifespan respite programs, based on models and best practices; evaluation of such programs; planned or emergency respite care services; training and recruitment of respite care workers and volunteers; and caregiver training.

There is no question that respite services are lacking in our state. As is often the case with disability services, respite is theoretically available everywhere, but the rates the state pays are too low to allow providers to offer enough of it to meet the need.

If passed, this is likely to be another federal program where state governments must agree to apply for the funds, so advocates in New York State might face a battle similar to the one we fought for the Medicaid Buy-In before respite services are expanded here.

In June we summarized the IDEA reauthorization situation. As this issue went to press, both the House and Senate were out on "summer break" and no bills had yet been drafted. It is fairly unlikely that any will be passed before November, so we still have time to affect the outcome.

The summer's big event was the President's Commission on Excellence in Special Education's report of its findings, A New Era: Revitalizing Special Education for Children and Their Families. The report accurately describes several problems but doesn't recommend specific solutions for many of them. It addresses the controversial "discipline" issue simply by supporting the mandate that school districts must continue to educate students with disabilities who are placed in "alternative" settings. It wasn't received with much enthusiasm by anyone--not even the President--and it's not clear how many of its ideas will be adopted.

Over the summer a group of advocates led by the Disability Rights and Education Fund (DREDF) has maintained a nationwide alert network on IDEA issues. This is a broad-based group. Some of its members seem to be "special children" parents who don't think their kids can be integrated or achieve on the same level as nondisabled children. That may explain the group's support for IDEA's weak language on "least restrictive environment" and for "process requirements" that emphasize parental involvement and de-emphasize student achievement. Other members are disability rights lawyers and advocates. They probably penned this quote from one of their alerts: ".parents have much experience with districts not doing the right thing or making educational decisions based on antiquated ideas, stereotyped notions of disability, outdated pedagogy, inexperience, and more. With the law in effect, we see widespread and deep areas of non-compliance. Daily, we see poorly written and developed IEPs, children placed in special education programs based on funding concerns and administrative convenience, children who have no or little access to the general education curriculum, children who are taught by unqualified teachers.--all of the factors specifically prohibited by IDEA." This coalition has kept the community informed on the issues, but its analyses of those issues have not shown much creativity or understanding. That quote demonstrates that the "law in effect" isn't working, but mostly what DREDF's coalition does is defend the current law.

The President's Commission report's most striking passage is the following: "Children should not be identified for special education without documenting what methods have been used to facilitate the child's learning and adaptation to the general education classroom." This is precisely what STIC has said for nearly 20 years: A good-faith effort to integrate every child with a disability, with appropriate supports, should be made before any segregated program is evenconsidered. We applaud this statement.

The most problematic passage is this: "General education and special education share responsibilities for children with disabilities. They are not separable at any level--cost, instruction, or even identification." The biggest single problem with special education is that the existence of separate funding streams has led to separate teachers, programs, classrooms and buildings for children with and without disabilities. For good reasons, DREDF has criticized the report's implied suggestion that special and general education funds should simply be combined and spread around. Do that and every high school in the midwest will suddenly sprout a 20,000-seat basketball stadium. But these advocates have shortsightedly refused to acknowledge the reality that using special education funds effectively to promote integration must necessarily result in some sharing of benefits between children with and without disabilities. It's not just special education that needs reform. In order to educate children with disabilities effectively, the nature of general education must also be changed.

The solution is to tell schools that they are no longer allowed to use special education funds to operate separate buildings, classrooms, or programs for children with disabilities. Instead, they must use the money to:

• 1. Train general education teachers to work with students with disabilities.
• 2. Hire special education teachers--never to operate separate classrooms, only to work with general education teachers to develop specialized interventions and provide additional help in general education classrooms.
• 3. Hire and train aides, at wages high enough to attract thoughtful and careful people who will stick around awhile, to assist children in general education classrooms.
• 4. Provide assistive technology to children in general education classrooms.
• 5. Reduce the number of nondisabled students in general education classrooms that specifically contain children with emotional disorders and/or autistic conditions, so those children can feasibly be educated in them.
• 6. Screen all children in the first grade for reading problems and emerging emotional/behavioral issues.
• 7. Pay 100% of the cost of intensive interventions to prevent or reduce emerging emotional/behavioral issues discovered by the screenings, and a percentage of the cost of intensive interventions to prevent or reduce reading problems that is equivalent to the proportion with which children identified by such screenings have historically, without intervention, gone on to be classified as having learning disabilities.

Items 5 - 7 are real bugaboos for DREDF. One of their alerts said, ".how you serve more children (general education students) with special education funds when special educators are begging for more money for special ed students is a mystery to us." It's no mystery to us. Kids with autism or emotional disorders have trouble in large, busy classes. But it's a mistake to segregate them at a young age and hope that they can be integrated later. Segregation itself creates bad behaviors and attitudes that can't easily be erased. It would be far better to reduce the size of a few general education classes and put these kids in them with good supports. A huge number of kids get "classified" as having learning or developmental disabilities simply because they can't read, either because English is their second language or because they live in poor neighborhoods with crummy schools, and because culturally-biased IQ tests are part of the process. Early screening and intensive intervention programs will fix many reading problems, and dropping IQ tests will put an end to cultural bias. Do these things and many of these kids won't have disabilities any more-because they never really did. After a year or so, they won't need special ed money, and that money will be freed up for the kids who need it long-term. These ideas are among the Commission report's best, in our view.

• 8. Provide individualized integrated school-to-work transition activities, especially supported part-time and summer work, and effectively connect students with disabilities with integrated social activities and groups.
• 9. Conduct valid assessments not primarily in order to "classify" children with disabilities but to see what services and supports they need to succeed in general education.

IDEA's enforcement system consists of putting states through compliance review processes with 814 indicators and lots of niggling over the language of policy documents. Almost none of it has anything to do with whether the state does an effective job of forcing the actual schools that do the actual educating to actually comply with the law. The report recommends that this be replaced by requiring states simply to provide written assurances that they comply. 814 indicators is absurd for any human organization. Even if they were all important, it would be impossible to devise a functional system to monitor and enforce them. It is equally absurd, however, to let states off with a simple written assurance. Governments issue false assurances often. For example, some years ago New York counties were asked to assure that their polling places were 100% accessible to people with disabilities. Several counties with many inaccessible polling places happily filed the assurances, and nobody from the state checked them. Somebody has always got to look at what government is doing in person.

Clearly, though, IDEA's requirements for state governments must be simplified, and even more importantly, they must focus on whether states do their primary job of enforcing the law in the schools. Let's look at how many inspectors the state has; how often and thoroughly districts are inspected; how many are cited (the feds admit that nobody fully complies with IDEA, so if a state is doing its job, there should be many citations); what they get cited for; how quickly the state responds to complaints from students and families; how quickly districts make corrections; and whether anything really bad happens to districts that don't comply.

The report's approach to enforcement is only a beginning. Its main method is to evaluate the academic progress of students with disabilities and cite districts that don't achieve it. This is good as far as it goes, but it gives short shrift to the importance of integration in the formation of young children's personalities, and to school-to-work transition. Schools should be evaluated on what happens to students with disabilities after they graduate--how many go on to higher education or to well-paying, stable, integrated jobs? How many end up living in integrated individualized settings? The report does recommend that districts that don't meet requirements for three years in a row should have their special education programs taken over by the state, and if problems continue, by the US Education Department. We think it would hurt even more if such schools had their state general education aid cut as well, but it's a start.

The report also calls for simplifying paperwork for school districts. The Commission was upset because, on average, special ed teachers spend 5 hours a week on IDEA-related paperwork. That doesn't sound like much to us. Ask an OMRDD service coordinator or a VESID supported employment worker if they'd like only 5 hours of paperwork a week. And special ed teachers make a lot more money than those folks do. The report proposes making "benchmarks and short-term objectives" in Individual Education Plans (IEPs) optional instead of required, for example. That's not a good idea because kids could potentially go a full year without making any progress before there would be a basis for charging the school with incompetence. However, it's clear that the language of the law and the regulations that implement it are so complex and convoluted that it's hard for district officials and teachers to understand what they're supposed to do.

The DREDF coalition has mounted a strong defense of IDEA's mostly mindless "process" requirements. They say they don't need to be changed, just enforced. But as their own alerts point out, the law isn't working very well. That's because when laws get too complex, they simply can't be enforced.

One interesting idea in the report is to require states to modify their standardized tests to make it possible for students with a variety of disabilities to take them without individualized accommodations. In essence, all students in the state would take the "accommodated" tests. That way there will be no questions about whether test scores for children with disabilities are valid.

The report strongly supports "school choice" ("vouchers"). It does say that special education funds should follow children with disabilities to any school their families choose, and that any school that receives them should be subject to the same special ed standards, evaluation and monitoring as public schools. It even takes the position that vouchers need to be adequately funded to ensure real choice. However, it is silent on the fact that private schools cannot be required to accept students with disabilities under current law.

We are still concerned that neither Congress, the President's Commission, nor the organized advocates are properly addressing the real problems with education for children with disabilities, and we strongly urge people who really understand those problems to get involved with the IDEA reauthorization process, before it's too late.

Disability advocates have been trying to change Medicare's "homebound rule" for many years. The rule says that people with disabilities who physically leave their homes on a regular basis for anything other than medical appointments, religious services or "day care" programs are not eligible for Medicare-funded personal assistance services. The rule was written in the 1960s, when an ability to leave the home was a good indicator that a person did not have a severe disability. The idea was to prevent "abuse" by people who didn't really need the service. Today, though, medical and assistive technologies have advanced to allow people with very severe disabilities to leave their homes regularly for work, education, and social purposes. It was never anybody's intention to prevent people from doing that, but as former Senator Bob Dole said in a Washington Post op-ed piece, "the awful reality of those receiving these services is that they must either lie or cheat just to enjoy fundamental liberties."

Medicare is the only source of long-term care services for many people with progressive adult-onset disabilities such as multiple sclerosis or "Lou Gehrig's disease". Many such people have work experience and skills and are good candidates for returning to work and self-support if they can have personal assistance with bathing, dressing, eating and other tasks that people need to do before, during and after work. Nor is there a cost issue, because these people will certainly get the services if they don't work.

In recent years, Medicare homecare recipients have increasingly had their benefits cut off for leaving the home for virtually any reason, even when the law allows it. This is due to stepped-up monitoring in the wake of the government's embarrassment over several publicized Medicare fraud cases. (Nearly all Medicare fraud is committed by medical providers, not consumers.) Disability advocates have turned up the heat on this issue, and now it seems they are being heard.

On the 12th. anniversary of the signing of the ADA, President Bush announced that he was "clarifying" the homebound rule to ensure that "people who are considered homebound can occasionally take part in their communities." While some advocates welcomed this announcement, most criticized its results. The Centers for Medicare and Medicaid Services simply created a list of "occasional" activities that Medicare homecare recipients can do without losing their benefits. Advocates say that the purpose of personal assistance services is to enable people with severe disabilities to participate in meaningful activity. The rule should be changed to let Medicare recipients use personal assistants if they need them regardless of whether, how often, or for what reasons they leave their homes, and assistants should be able to accompany them outside the home for shopping, work, education, or wherever else they are needed.

Bills were introduced in the House and Senate to correct this problem. The Senate version, S. 2848, is fairly conservative; it would remove the homebound rule for people with very severe permanent disabilities only, not for all who are eligible for Medicare homecare. In early August, advocates worried that even more conservative language would be approved instead of this bill, and they organized consumers to contact the Senate Finance Committee to get S. 2848 passed. At press time, the Senate is on summer break, and we don't know if they were successful.

Following a dramatic--and quite brief--sit-in in Senate Majority Leader Joseph Bruno's office by members of ADAPT in June, the Senate passed the Most Integrated Setting bill.

The bill, passed by the Assembly earlier this spring, would create a NY State Most Integrated Setting Council to study all state disability service systems and policies, identify barriers to integration as well as service gaps and needs, and create a plan to ensure that people with disabilities are able to receive services in the most integrated settings possible, in compliance with the Supreme Court's Olmstead decision.

Over the summer, with different aides to the Governor providing different stories about whether he would sign it, disability advocates in Watertown and Albany confronted Pataki at campaign appearances and urged him to sign the bill. At a fundraising dinner in Albany, Pataki said he was "99% sure" he would sign it.

At this writing he had still not signed it, and advocates were in the midst of a statewide phone and letter campaign to convince him to do so.

More evidence came to light this summer of the New York State Department of Health (DOH)'s continuing inability and/or unwillingness to prevent neglect and abuse in institutions for people with disabilities. In July, the Binghamton Press & Sun-Bulletin published a series of stories describing its intensive investigation of nursing home oversight in the state. It found that DOH "has responded to serious--sometimes lethal--lapses in care with secrecy, slow investigations and token penalties." Several of those lapses were in nursing homes in our region.

DOH violated the state's Freedom of Information Law by delaying release of records to the newspaper for a year and a half. Once received, a review of 761 cases dated between 1998 and 2000 revealed, among other things, that a patient in Endicott's Ideal Senior Living Center died because an aide failed to provide proper care, DOH didn't investigate until almost two years later, and when they did, they fined the aide $150. In another case, a woman who fell at the Susquehanna Nursing Home was not immediately examined and given treatment; instead she was propped up in a chair to wait for an ambulance. She died and it took DOH almost a year to issue a report. Four months passed before an investigation was begun of an incident in a Waverly nursing home in which a 92-year-old woman fell and broke her hip and the nurse in attendance didn't report it. In two incidents at Valley View Manor Nursing Home in Norwich, aides who behaved negligently, resulting in injuries to residents, were fined less than $200 and allowed to keep their jobs.

The state maintains a registry of nursing home workers who have been cited for misbehavior. Nursing homes are supposed to check this list before hiring staff. One consequence of the long delays in investigations is that workers who get fired for misconduct often don't get added to the list for months or years, and in the meantime they get hired by other nursing homes.

The number of complaints of abuse or mistreatment of nursing home inmates in New York State has more than doubled since 1996. Cuts in state Medicaid reimbursement rates have made it harder to hire and train good workers, and DOH's monitoring system has not expanded to meet the need. The state has also failed to publicize home-based alternatives to nursing homes, including Consumer Directed Personal Assistance, or create incentives for counties to promote them and citizens to choose them. State Comptroller and gubernatorial candidate H. Carl McCall released an audit in July that supported the Press & Sun-Bulletin's findings. According to the paper, McCall said, "We uncovered thousands of cases where nursing home complaints were not handled properly, leaving nursing home residents and their families to wonder whether anyone was paying attention to them."

DOH's performance in this area was criticized by the federal government two years ago, and in 1999 its own inspectors reported that the monitoring system was understaffed and had deficiencies of "quality as well as quantity." Under this pressure, DOH increased the number of deficiency citations at nursing homes, but apparently did not beef up its incident investigation apparatus. Around the time that these revelations emerged publicly in July, DOH announced that it had hired a former FBI agent to oversee complaint investigations.

Meanwhile, most of the nursing home operators and lobbyists contacted by the Press & Sun-Bulletin took a defensive stance, charging state inspectors with nit-picking, hostile attitudes and harming staff morale.

Last issue we published a chart showing New York State costs for various integrated and segregated service settings for people with disabilities. Since then we've received some better numbers, and some people were confused by our presentation, so we are providing an updated version.

How We Got the Numbers

These numbers resulted from a long process to estimate New York State's average total annual costs for keeping a person in each of these settings. In most cases, the figures include amounts from several sources. For example, everyone who lives in an OMRDD IRA also gets the state's Level II SSI subsidy, and nearly all IRA residents are also on the OMRDD HCBS Waiver. So our OMRDD Group Home (IRA) figure includes the average state IRA cost plus Level II SSI plus the average OMRDD waiver cost. Level II subsidies (currently $5,211 per year) apply to anyone living in an OMRDD or OMH facility. To be fair, we've also assumed that everyone living in an integrated setting would also receive the much smaller Level I SSI subsidy, even though some would not due to their income or disability type.

The letters in the chart's second column indicate the type of setting: "S" for segregated, "I" for integrated. A very small number of IRAs are actually not group homes, but so far that number is so tiny that it doesn't significantly affect the average costs.

Here's what Vermont Governor Howard Dean told the Senate Special Committee on Aging at a hearing inJune. His remarks were made on behalf of the National Governors Association.

"Let me talk about the institutional bias in long term care....

Nursing home care is an entitlement under the Medicaid Program while people who would prefer to be on the Home and Community Based Waiver program must wait, often for a long period of time, on waiting lists. This means that elderly and disabled Americans are entitled to receive the highest cost and least desirable service, yet they must wait in line for the cheaper and more desirable service. There is something very wrong with this picture.... When it comes to long term care, we put the most expensive and least desirable service first.

This calls for a complete paradigm shift. We need to treat nursing homes and other institutional care as the last option, after all other options have been tried and failed.... Experience has shown that we can serve many more people with the same funding, and serve them in the setting they prefer, when we are able to keep them at home and avoid institutional costs. Perhaps more importantly, we can provide a higher quality of life by avoiding institutional services whenever possible. People who need long-term care want it to be provided at home. No one wants to spend their last days or even years surrounded by strangers, separated from their families and friends, enduring constant changes in staff and regular changes even of the people who are in their nursing home room.

Consumers are demanding more alternatives and rejecting institutional care. All we have to do is listen to them and follow their lead. If we do, we will have a better system of care and one which provides for more people for the same dollars.

Some people insist we will need more nursing homes. They are wrong. Baby boomers today are looking for alternatives for their parents.... We can't afford to protect the status quo. We need to listen to our people and act boldly to develop those services they want and which are more affordable."

The Pfizer drug company is offering a special discount plan on its products to people who meet certain eligibility requirements. If you qualify for the "Share Card", you can get a 30-day supply of various Pfizer drugs for only $15.

To qualify, you must be enrolled in Medicare, have no prescription drug coverage, and have an annual gross income of less than $18,000 for an individual or $24,000 for couples.

To apply, you must provide proof of your Medicare enrollment and income.

These are stories about real people in real group homes in STIC's service area. As always, identifying details have been changed.

Group homes are "people-maintenance machines": they have standard routines that keep people alive--though not always in good health--but they simply don't respond to individual needs. A few years of this and the people in them stop being individuals. They turn into needy, attention-seeking, acting-out "residents". Here are two examples:

Sheila uses a power wheelchair. Until a couple years ago, she lived at home with her family, where she had a fully accessible bathroom and could do her own bathing and hygiene. She needed a lot of assistance with other things, including regular physical therapy and help with eating. She was on OMRDD's Home and Community Based Services (HCBS) waiver, but she couldn't get enough assistance to meet her needs.

HCBS waivers can provide all the assistance someone like Sheila needs, but only if they're fully funded. It's getting harder and harder to find people to provide personal assistance because of the low wages and limited benefits that waiver rates force providers to offer. OMRDD spends, on average, twice as much to keep someone in a group home as it does to support a person in an integrated setting and, as we'll see, the group home usually provides inferior service (see "NYS Disability Service Costs Revised" for more on these costs). Yet the state keeps opening new group homes while restricting availability of funds for integrated supports.

Sheila had to go to a group home to get the services she needed. Except that she doesn't get them there, either. What she gets is jerked around. The bathroom is not accessible, so now people have to help her bathe when she used to be able to do it alone. And they don't do that great a job. She wants to learn how to cook and do laundry. She can't learn to do laundry because the house's laundry facilities are in the inaccessible basement. Not only that, but the staff who do her laundry routinely lose it or mix it up with that of other residents. Sheila likes to look good, but the staff don't iron her clothes and, when helping her dress, don't even pay attention to whether her colors match. Sheila can't learn about cooking because they don't really cook anything in the house, they just throw stuff in the microwave.

Sheila had some personal information tacked up on the wall of her room as a reminder to herself and the staff to assist her with money management. The OMRDD inspectors called this a violation of her privacy, and made her put it away in a drawer. Now neither she nor the staff remembers to work on it.

Sheila likes to go out and do things and meet people. She gets out once a month on the usual group-home restricted basis--everybody goes to the same place, and they leave early. After Sheila decided to go somewhere on her own one day, the staff had her wheelchair's speed reduced so she couldn't "get away" from them any more. This is like breaking somebody's legs so they can't walk so fast. It's faster to push her in her shabby, worn-out manual chair now, so that's what they do.

The group home has stolen Sheila's independence in two of the most basic human activities--staying clean and moving around. They've turned a sharp-looking, spirited, friendly woman into a shabbily-dressed, messy, very unhappy person.

Adam is a young man whose disabilities took a temporary turn for the worse. Once pretty independent, he now needs a lot of support and supervision. Over time, his condition will probably improve-but only if he is allowed and expected to do as much as he can for himself. Once again, the HCBS waiver could not meet his needs, not because it is poorly designed, but because the state would rather fund group homes than waiver services. So he went to a group home.

Adam tries hard to be independent. He's good at using checklists to remember things, but needs help to keep them up to date. The house staff don't bother with this, so Adam has pretty much lost his "memory". Since he can't remember to do things for himself, the staff do them for him-haphazardly, if and when they remember.

Adam can shave with a blade razor. The staff won't let him do so for "safety" reasons and insist on an electric razor, which he doesn't like or know how to use. When it comes to laundry, Adam is in the same boat as Sheila-his clothes get lost, mismatched, or damaged, and they won't keep his clothing or personal items organized so he can find and match them himself.

There is little for Adam to do but sit on the couch and watch TV. Often, he gets shifted from his alleged "home" to some other house due to staff shortages.

The only individual touches in his life are provided by family members who take him out of the home frequently. When they don't see to his preferences in personal products, hairstyle, clothing, and the subtler aspects of personal hygiene, he is unkempt and poorly-dressed.

Adam likes to exercise, but can't do so in the tight and crowded spaces in the house. He takes medications that improve his weight and energy level when administered properly. But the staff follow a standard medication schedule for everybody, so Adam doesn't get his meds at the optimum time. As a result of all this, he's gained a lot of weight and is having trouble with dressing, using the bathroom, and moving around.

Naturally, Adam is not happy, and has begun making that clear. As a result, he's on a "behavior plan", which the staff don't follow consistently, so they say it "doesn't work". Some of the staff are becoming hostile to him-accusing him of stealing without evidence, complaining about him in front of the other residents.

Adam is a young adult who doesn't want to live with his parents. He has friends in the group home and wants to be with them. But the home is failing him miserably, and hampering his recovery from his temporary condition. The end result will be that it will be impossible for him to stay there with his friends.

Both of these people were pretty independent, when enabled to do things their own way. But group homes are cookie-cutter mini-institutions; the staff only do things their way. People who live in them get squashed into the standard mold for the convenience of the staff and the efficiencies demanded by the system. If they lose their independence, their personalities, or even some of their health as a result, the system just shrugs. They are, after all, alive, and they, and their written records, can be produced when inspectors want to see them. When it comes down to brass tacks, that's all that is expected or required by those who pay the bills.

by Linda Greeno

Not long ago, a deaf patient went to the emergency room. He was there for more than 6 hours. He was found freezing cold and very thirsty. He had no way to communicate with any of the medical staff because he had no interpreter. The hospital didn't call for an interpreter for him because he couldn't write or speak, so he wasn't able to speak up for himself.

Can you believe that the hospital never called to get an interpreter to find out what is wrong with him!

The Deaf patient stayed in the hospital for a week, he was never provided with an interpreter so they could find out what was wrong with him. I went to the hospital to advocate for him but still the hospital staff did nothing, even though they had no idea what was wrong with the Deaf man. The nurses felt they could communicate with him just fine without interpreters. How? This Deaf man could not speak or write so how could they communicate with him? The Deaf patient did try to communicate by yelling to get attention but the medical staff did not know what he wanted. They could not understand him at all!

I know all this because I was there almost every day to advocate for him, but the hospital staff ignored me too. It's hard to watch a person who can't speak for themselves. If only he was able to write to request an interpreter, maybe they would listen. But why do things have to be this way?

The hospital staff should call in an interpreter as soon as a Deaf person arrives. Once they have clear communication they can decide when they will need an interpreter and when they can do without. Those of us who can read and write need to fight for the rights of all Deaf people and not let medical authorities oppress us.

by Linda Greeno

Who decides if we need an interpreter or not?

You have a right, by law, to have an interpreter when you need one to communicate with government, service agencies, medical providers, employers and most private businesses. You have a right to request an interpreter to communicate with your doctor, hospitals, lawyers, schools, police, at community meetings, and many more places.

Don't be afraid to ask for an interpreter.

Here is a suggestion for a nice and easy way to start out asking:

"I am requesting an interpreter for this appointment. You can contact the Interpreter Coordinator at Southern Tier Independence Center, the phone number is 724-2111 Ext. 338. Thank you."

Many times, the secretary has no idea how to get an interpreter, so it's best and easiest for all of us for you to give all the information to them at the same time. But! I would recommend everyone to call STIC yourself after you made a call for your appointment to let the Interpreter Coordinator know about your appointment and that you requested an interpreter. If you tell the Interpreter Coordinator this information she can support you by following up and asking why they haven't called since it has been a few days since the Deaf person requested an interpreter for their appointment. Make sure you leave all the information with STIC: your name, date and time of your appointment, name of the person who you will see, address where the appointment will be, the office phone number where your appointment will be and any other information you can think of. Be sure to leave your own phone number in case the Interpreter Coordinator needs to call you back.

An example: "Hi, this is Jane Smith and I have an appointment with Dr. Joe Brown on June 15, 2003 at 3:00 pm at 12345 Main St., Binghamton, NY 13906 and the doctor's phone number is 555-1234. My phone number is 555-6789. Thank you."

You have a right to have an interpreter. You can say who you feel comfortable with and who you understand the best. Don't depend on other people to tell you who you should or should not use as your interpreter. An interpreter who works well for one person might not be the right person for you. It's your job to make your life easier and get all the necessary information. Don't listen to gossip either. It's your life, not theirs; you take charge of your life.