OH Adult Home Scandal Blows Up
Many people, when they hear the term "adult home", imagine a home-like atmosphere for a few people with disabilities living at one address and receiving individualized supports and assistance. In fact, the adult homes in New York City that were the subject of the Times expos, are huge warehouses ranging in size from 60 to over 350 beds. In many of them, two or three people live in each room with no reliably-provided support or assistance; when provided, such supports rarely go beyond basic room, board, and medication.
In its exhaustive, year-long investigation, the Times found that adult homes are typically extremely understaffed and what staff they have are untrained, unskilled workers making little more than minimum wage. There do not appear to be many enforced requirements concerning supports and services for the residents. As a result, they often have nothing better to do than sit in their rooms, wander the halls, or brawl violently with each other. Most do not receive assistance to work or volunteer in the community, learn new skills, or develop integrated social lives. Many whose symptoms could be significantly improved with modern medications, peer support, and psychosocial treatment apparently do not receive any regular services at all. It is common for residents to experience uncontrolled seizures, outbreaks of paranoid delusion, or paralyzing depression without any intervention or even regular observation by staff. Adult home residents die at an appallingly high rate, but the circumstances--or even the simple fact--of those deaths are rarely reported to DOH. When they are, DOH typically does not investigate. Despite a 1994 law requiring adult homes to report deaths, out of nearly 1,000 deaths over 6 years that the Times documented, only three appeared in DOH records. Some of these deaths are due to natural causes, but many more result from overheating, suicide, or easily-treatable illness or injury. The bodies may not be discovered by facility staff for hours or days, and are buried in paupers' graves marked only by numbers. These journalistic findings were foreshadowed by reports issued by the NYS Comptroller and the state Commission on Quality of Care that state officials ignored. When confronted by the Times reporter, DOH officials promised to issue specific regulations informing adult home operators that the death notification law must be obeyed. Seven weeks later, no such regulation had been issued.
Here are just a few examples of what the Times found:
Research conducted by New York State indicates that people with psychiatric disabilities are twice as likely to die during heat waves as members of the general population. This is because their medications often reduce their ability to sense heat or to sweat, and those with severe symptoms are less likely to take precautions such as drinking more fluids. However, there is no requirement that adult homes in New York City, where summer temperatures can reach the upper 90s or higher for days at a time, be air conditioned. In one incident, a resident in a top floor room died of overheating because the facility's staff refused to check on her; they said it was too hot for them to go up there. In July 1999, 17 adult home residents died of overheating alone.
Another resident experienced heart attack symptoms, including chest pain and shortness of breath, for over 48 hours. She complained repeatedly and was examined by both a nurse and a physician, both of whom misdiagnosed her symptoms as "anxiety". She called her sister, told her that she thought she was having a heart attack, and that the staff were ignoring her. Her sister called the home and the staff told her the resident was fine. The next morning she was found dead on the floor of her room; the autopsy showed heart failure.
In one home, a man with a history of violent attacks (he had stabbed and beaten up several members of his family) lived in a tiny room with two roommates, both of whom he repeatedly threatened with knives. The man's dangerous behavior was well-known by the staff, who were afraid to deal with him. His behavior and threats were documented by various psychiatrists who treated him for short periods but apparently had no ongoing responsibility for his care. One day he stabbed one of his roommates 20 Times in the chest and neck, killing him. The roommate usually called his mother twice a day. When he missed the first call, she called the home to check on him and was told everything was fine. When he missed the second call, she went to the home but the staff wouldn't let her in. It wasn't until much later that night that the police told her that her son had been murdered.
The Times also found several cases of people who killed themselves, many by jumping out of facility windows or off roofs, whose suicide threats had received no special attention and whose deaths were not investigated. Residents were frequently seen unbathed, naked, and/or immobilized by psychosis or depression and sitting in their own wastes. One staff person whose job was to dispense medication was found to be nearly illiterate.
A lot of this information came from deficiency reports filed by DOH inspectors. While the operators of a couple of homes were forced to sell the facilities to new owners and get out of the industry, it appears that in most cases no significant follow-up or enforcement measures to address these deficiencies were undertaken.
Following the Times expose, the Village Voice ran its own investigation of the politics of adult-home regulation. They found that in the late 1990s, the Empire State Association of Adult Homes and Assisted Living Facilities (ESAAHALF) was paying $150,000 a year for the lobbying services of Coppola, Ryan & McHugh. This was one of the top ten largest lobbying contracts in the state in 1997. The wife of the firm's Patrick McHugh is Martha McHugh, a former Director of Scheduling for Pataki, and now the DOH Assistant Commissioner for Intergovernmental Affairs; she makes $104,000 per year. Patrick McHugh's brother is Republican Congressman John McHugh, but in a possible indication of moral character, when interviewed by a Voice reporter, Patrick denied any relation to the Congressman and said he didn't know when his wife started working at DOH. The Voice also found that a former Executive Director of the McHugh lobbying firm, Susan Peerless, now gets $97,000 a year as a special assistant to DOH Commissioner Antonia Novello for "long-term care and advising on adult home matters". Peerless had earlier served on a Pataki-created task force to evaluate long-term care financing. The Voice reported, "Sources with firsthand knowledge of the Empire State's lobbying pitch say its primary message was simply: `Leave us alone.'" McHugh and other members of his firm have donated almost $18,000 to Pataki's campaigns and state Republican committees since 1995. ESAAHALF itself has made some $31,000 in contributions to Republican organizations. The association fired McHugh's firm in 2001 and hired two other lobbyists, one of which donated $68,000 to Republicans. The other has given $25,000 to Democratic Assembly Speaker Sheldon Silver's campaigns.
Although the state Comptroller reported in 1999 that New York's system for monitoring adult care homes was broken, and disability advocates have been criticizing the facilities for much longer than that, the Pataki Administration took no significant action until the Times began its 4-day front-page expose in April. On April 26 the Governor issued a press release announcing a proposed bill to address the problem. The bill would make it illegal for hospitals, nursing homes, and state institutions to release or refer people to adult homes that have been cited for serious and uncorrected violations affecting health, safety or welfare, or that do not have valid operating certificates. State agencies including OMH and OMRDD would have an additional responsibility to document that any such facility to whom a person is being released is able to provide services consistent with the person's needs. The maximum fine per single violation would be raised from $1,000 to $5,000, and a repeat violation within 2 years would carry a $10,000 fine. Facilities would no longer be able to escape fines by correcting problems within 30 days. Lists of cited facilities would be widely distributed to agencies and made public on the internet. The bill would attempt to beef up adult home monitoring by providing for "dedicated" staff to conduct unannounced visits and reviews; however, the press release did not mention any new funding, so it is unclear whether these "dedicated" staff would represent a real increase in monitoring activity. The press release also mentioned measures to improve medication management, provide more services to assist people with mental health disabilities to become more independent, and to increase consumer participation in the operation and oversight of adult homes. Again, however, no new funding for these measures was mentioned. Some disability advocates responded positively to this proposal.
STIC agrees that these are positive steps, but they fall woefully short of an appropriate solution to the problem. The problem is the very existence of these human warehouses. It has been repeatedly demonstrated that people with mental health disabilities respond well to effective individualized, peer-based integrated community supports. In these programs, people with severe mental illness and histories of non-cooperation with medication regimes have flourished--getting jobs, forming lasting social bonds, and achieving much greater levels of independence. Huge institutions, even with better monitoring and some more services, will never achieve these kinds of results. New York State blew its opportunity to create a high-quality community-based mental health system when it transferred money saved from its historic closures of psychiatric centers to the general fund and spent it on such things as education aid to wealthy school districts, multi-million-dollar pork-barrel projects like sports stadiums and cheese museums, and corporate welfare. It is time for New York's leaders to acknowledge that this policy was wrong, and reverse it. The Willowbrook scandal forced our state to accept responsibility not just to feed and house people with developmental disabilities, but to make strong efforts to improve their lives. The Willowbrook response was not perfect; it has made it hard to flexibly address the individual needs of "Willowbrook Class" members. But the principle of responsibility for providing high-quality services must be extended to people with mental health disabilities. Nor will much new funding be required. The Times reported that New York spends an average of $40,000 annually to keep a person in an adult care home. For that money, the state could rent a nice apartment and cover most of the cost of appropriate individualized supports for each of those inmates. A band-aid approach to fixing a corrupt and fundamentally segregated and inhumane service system is unacceptable. New York should adopt a phased plan to close all congregate facilities for people with mental health disabilities, including adult care homes, and transfer all of the money to peer-based individualized, integrated support services.
We've cancelled our "Find the Facts" contest. The original idea was to get more people to read the newsletter more carefully. We don't know if it ever had that effect, but we do know that, over time, we began to see entries from the same small handful of people over and over. Since we already know you folks are reading, it doesn't make much sense to continue.
Still, we thank all of you who participated, and offer our congratulations once again. And, of course, congratulations also go out to our last--and final--winner:
EDITOR: KEN DIBBLE
24 Prospect Avenue
Binghamton, NY 13901
Annual Campaign Strikes Again
Each year at this time we come to you to ask for your financial support. While it's true that STIC gets a lot of funding from various fees and government contracts, most of that money is earmarked for special purposes and specific services, and it doesn't fully cover the costs of running this place. The money that you freely give us has no strings attached, and that means we can use it to support our strong advocacy efforts, respond rapidly to the changing needs of consumers, and keep our building standing and in good condition.
If you prefer to give where you work through the United Way or State Employees Federated Appeal (SEFA), you can make STIC your "donor option" and your contribution will come directly to us. (If you work at IBM it may not be obvious how to do this; rest assured it is possible, and you should ask your supervisor for assistance.) If you work for the Postal Service or other federal agency, you can't do this through the Combined Federal Campaign (CFC); we hope you'll make a direct gift to STIC instead.
We're proud to say that with your help, we exceeded last year's goal of $5,500, with a final total of $5,707. Good work, folks! So this year, we've upped the ante; the goal for STIC's 13th. Annual Campaign is $6,000. If you've still got the form and return envelope, please use them to send in your gift; it makes it easier to track progress toward our goal. But you can just write "annual campaign" on the memo line of your check too. The form also lets you say if you want us to publicize your gift here in our newsletter; we won't do it unless you specifically say we can.
Thanks in advance, and have a great summer!
STIC awarded DOH TBI Regional
Resource Center Contract
The primary role of the RRDC is to meet and assist individuals who have sustained a traumatic brain injury in applying/establishing eligibility for DOH TBI waiver services, and provide a list of approved providers for the program and ongoing review of the individual's services. In addition, the RRDC provides information, technical assistance and quality assurance oversight to approved DOH TBI waiver providers, develops new providers of services in the region and offers the community an information/referral source for TBI-related issues.
The Department of Health TBI waiver program is designed to assist individuals who have sustained a TBI to live independently in the community. The program offers a wide variety of services that are specifically designed to assist the individual to remain in their own home and circumvent an institutional/nursing home placement. These services include Service Coordination, Independent Living Skills Training/Development, Community Integration Counseling, Intensive Behavioral Programs, Home and Community Support Services, Respite, and Environmental Modification. An individual may choose to receive one or all of these services and, in addition, may augment the TBI waiver with services from the Consumer Directed Personal Assistance Program, a visiting nurse service, Personal Care Assistance and/or community and natural supports. The program also offers rental assistance, utility subsidy and housing supports to those individuals in need who meet the specific housing qualifications.
Individual eligibility requirements for the TBI waiver program include:
- Has sustained a traumatic brain injury between the ages of 18 and 64 but is currently under the age of 65 (if the TBI was sustained between the ages of 18-22, the person must seek assistance from OMRDD first)
- Has NYS Medicaid
- Is eligible for a nursing home level of care as determined by a Patient Review Instrument/Screen (PRI/Screen)
- Chooses to live in the community rather than a nursing home
- Has an identified residence in the community that meets the individual's needs
Although only in existence since 1995, the TBI waiver program has assisted countless individuals to relocate back to their home communities, often from out-of-state nursing homes and/or other institutional-type care. Supporting the individual to re-establish their relationship with family, community and work are the core values of the TBI waiver program. This philosophy, along with a strong commitment to individual choice of service providers, personal objectives and valued outcomes, enables the program to currently assist over 1,000 NYS citizens to live independently in their home communities.
For more information on the TBI waiver program in the Binghamton Region or for a referral for TBI services throughout the state, contact Rhonda Bennett (Regional Resource Development Specialist) or Beth Hall (RRD Assistant) at (607) 724-2111 (voice/TTY).
Souther Tier Independence Center's
Five Year Advocacy Plan
2002 - 2007
Obj. A.1.a. Meetings are held with BOCES and school administrators, and school districts agree to include STIC staff as presenters in ongoing teacher trainings.
Obj. A.3.a. A position paper is developed recommending appropriate policy, regulatory and legislative changes to promote and enforce inclusion in schools.
Goal A.1. STIC staff will be presenters/trainers for teachers/administrators ongoing trainings.
Obj. A.2.a. Resources are acquired to fund a part-time position to coordinate student peer mentoring project.
Obj. A.3.b. Position paper is circulated to advocates, law/policy makers, the Board of Regents and key SED officials.
Obj. A.3.c. Establish a work group to develop/implement strategies for achieving the goals in our position paper.
Goal A.2. Implement a mentoring project which would match students with disabilities of all ages with youths or adults with similar disabilities in Broome, Chenango and Tioga Counties.
Obj. A.3.d. Legislative sponsors are recruited and a bill is developed.
|Obj. A.3.e. A bill is introduced in the state legislature to change the education funding formula so that money follows students from segregated to inclusive settings.||Goal A.3. State legislation is adopted which changes the funding formula so that money follows students from segregated to inclusive settings.|
Obj. B.1.a. An agreement is reached with VESID allowing STIC to provide supported employment services to high school students in Broome, Chenango and Tioga Counties.
Obj. B.2.a. A position paper is developed making recommendations for appropriate policy/regulatory/legislative changes to effect transference of employment support funding from segregated to integrated programs.
Obj. B.2.b. The Disability Budget and Policy Coalition adopts transference of employment support funding from segregated to integrated programs as part of their advocacy agenda.
Goal B.1. Supported employment services will be available to high school students with disabilities in Broome, Chenango and Tioga Counties.
Obj. B.1.b. STIC hires a part-time job developer to work with high school students.
Obj. B.2.c. Legislative sponsors are found to hold public hearings on transferring employment services funding from segregated to integrated programs.
Obj. B.2.d. The Statewide Systems Advocacy Network adopts transference of employment supports funding from segregated to integrated programs as one of their issues.
|Obj. B.2.e. Legislative hearings are held on issues related to transferring money from segregated to integrated employment supports and a report is issued on the results.||Obj. B.2.f. Legislation is introduced which requires the money to follow individuals from segregated to integrated work settings.||Goal B.2. State legislation is adopted changing funding distribution so that the dollars follow individuals from segregated to integrated employment settings.|
|C. Health Care||Obj. C.1.a. A comprehensive Olmstead Plan is implemented statewide with the supports necessary to achieve successful deinstitutionalization of people with disabilities.||
Obj. C.1.b. STIC hires a half-time Integration Specialist to coordinate efforts to transition people out of institutions and into the community.
Obj. C.1.c. A waiver for people with physical disabilities is fully implemented.
|Obj. C.1.d. Integration Specialist increased to _-time.||Obj. C.1.e. The EPIC Program is revised to cover people with disabilities as well as senior citizens.||Goal C.1. Achieve the goals of the Disability Budget and Policy Coalition (DBPC), the Statewide Systems Advocacy Network (SSAN) and Americans Demanding Access (ADAC).|
Obj. D.1.a. Assembly and Senate sponsors are found for Sovereign Immunity legislation.
Obj. D.1.b. Assembly sponsorship is found for a Public Entities bill.
Obj. D.1.c. Assembly sponsorship is found for a Public Accommodations bill.
Obj. D.1.d. Senate sponsorship is found for a Public Entities bill.
Obj. D.1.e. Sovereign Immunity Legislation is adopted.
Obj. D.1.f. Senate and Assembly sponsors are found for a Public Accommodations bill.
Obj. D.1.g. A Public Entities Bill is adopted.
|Obj. D.1.h. A Public Accommodations Bill is adopted.||Goal D.1. Achieve the goals of DBPC, SSAN and ADAC.|
Obj. F.1.a. STIC staff will develop a syllabus for a Binghamton University course on disability issues/rights/philosophy.
Obj. F.2.a. An advocacy network/ infrastructure is established with organized teams of trained consumer advocates available to address issues as they arise.
Obj. F.3.a. Funding is established to hire a part-time paralegal.
Goal F.1. The School of Education/ Human Development at Binghamton University will have disability issues integrated into all pertinent social sciences curricula.
Obj. F.1.b. STIC staff will teach a Binghamton University course on disability issues/rights/philosophy.
Obj. F.2.b. STIC's Systems Advocate becomes full-time.
Obj. F.2.c. Consumers will be active participants on policy/planning boards in our service area.
Obj. F.3.b. A «-time paralegal is hired.
Obj. F.2.d. Sponsors are found for election reform legislation in both the Senate and Assembly.
Obj. F.3.c. Paralegal is increased to _-time.
Obj. F.2.e. Election reform legislation is adopted which includes provisions for mandating accessible polling sites and voting machines.
Obj. F.3.d. An attorney is put on retainer to assist with advocacy issues.
Goal F.2. Achieve the goals of DBPC, SSAN and ADAC.
Goal F.3. In order for the community to have a local resource to address disability rights issues/concerns, STIC will have a full-time paralegal on staff and an attorney on retainer.
Maria Dibble, Executive Director
firstname.lastname@example.org - x318
Frank Pennisi, Program Coordinator
email@example.com - x320
Paula Bartlow, Fiscal Manager
firstname.lastname@example.org - x327
- ADA Services:
Frank Pennisi - x320
- Benefits Services:
Ray Pierce - x348
- Deaf Services:
Linda Greeno - x311
- Interpreter Services:
Carrie Watkins-Smith - voice x338
Emergency Beeper - 774-4780
- Peer Counseling:
Sue Link - x323
Danny Cullen - x325
Mark Hildebrant - x331
- Personal Assistance Services:
Joy Earthdancer - x310
- Psychotherapy Services:
Charlie Kramer - x309
- Service Coordinators:
Jo Anne Novicky (supervisor) - x326
Jess Arnold - x355
Valerie Fulton - x307
Nadine Olshefski - x350
Kathy Sas - x322
Jen Summers - x339
- Supported Employment:
Sue Ruff (supervisor) - x333
Lidia Conde - x334
Amber George - x332
Stacy Richards - x335
- Systems Advocacy:
Jen Ayala - x353
- TBI Resource Center:
Rhonda Bennett (supervisor) - x347
Beth Hall - x336
- Technology/Access Services:
Darlene Dickinson - x346
Andy Sedor (12:30 - 3:30, M-F) - x312
- Transition Services:
Julie Epply (supervisor) - x357
Qassem Al-Nadi - x351
- Wingspan Center:
Jennifer Groves - x329
NEWS & ANALYSIS
ADAPT Challenges the
New Freedom Initiative
The week began on Mothers Day, when ADAPT members in Washington and Texas presented huge Mothers Day cards to First Lady Laura Bush and President Bush's mother Barbara. The cards praised both women's work on behalf of oppressed women in Afghanistan and elsewhere, and reminded them that 75% of people in nursing homes are women, most of whom have been separated from their families simply because they could not get the assistance they need at home.
The next day, activists blocked doorways and intersections for five hours around the Office of Management and Budget (OMB) offices in Washington. They demanded a meeting with OMB Director Mitchell Daniels, Jr., who keeps saying the federal government can't afford MiCASSA, even though that bill would do nothing more than transfer existing Medicaid dollars from nursing homes to community-based services. Daniels agreed to meet with ADAPT before July 15 to discuss several ideas to put community services on an equal funding basis with institutional services, including providing an increase in the federal portion of Medicaid dollars for community services, more grants to help states transition from institutionally-biased to community services, and a national 5-10 year demonstration project in at least 5 states to coordinate community-based services for persons eligible for both Medicaid and Medicare.
On Tuesday the target was big public employee unions that oppose deinstitutionalization out of fear for the jobs of their members. The disability rights community's message on this has been consistent for decades: people with disabilities don't exist to provide jobs for institutional workers and must be allowed to live their lives as they see fit, and a proper transfer of funding from institutional to community-based settings will create new, well-paid jobs for experienced workers. Protesters at the national offices of the AFL-CIO and the two largest public-employee unions, AFSCME and SEIU, quickly got to union officials, who agreed to arrange formal meetings with union leaders within 60 days. The AFL-CIO's Director of Legislation provided a written letter of commitment which stated that the union "supports the effort to move care for people with disabilities into the communities where they live and work." Later that afternoon, 500 protesters showed up outside the HUD office to remind workers as they left for home that the disability community remains disappointed in HUD's failure to follow through on promises to ensure greater availability of accessible public housing.
On Wednesday, ADAPT held a press conference attended by MiCASSA principal sponsors Senators Tom Harkin (D-IA) and Arlen Specter (R-PA) and Representatives Danny Davis (D-IL), and John Shimkus (R-IL), plus several other members of Congress and many national disability leaders. Speakers rallied the troops, who then headed off to meet with their legislators to promote MiCASSA and real implementation of Bush's New Freedom Initiative. Also on Wednesday, the Chairman of the Democratic National Committee formally endorsed MiCASSA--something neither Gore nor Clinton ever did.
Bush's initiative received sharp criticism as "just a bunch of pretty words" throughout the week. The New Freedom Initiative is a package of modest proposals that President Bush announced early in 2001 to increase community integration and independence for people with disabilities. It included a Presidential Executive Order to swiftly implement and enforce the Supreme Court's Olmstead decision, which says that failure by state governments to provide services to people with disabilities in the most integrated settings possible is illegal discrimination under the ADA. As we reported last issue, several federal departments are working on this, but the work consists mostly of unfunded rhetoric about "coordination" and "promotion", and some poorly-funded pilot projects to demonstrate ideas that are already proven effective. Advocates charged hypocrisy when Bush reneged on his New Freedom promise to fully-fund the Individuals with Disabilities Education Act (IDEA), and when he undermined his pledge to support and defend the ADA by appointing several anti-ADA judges to the federal bench.
Just before the ADAPT actions, the Bush Administration released a progress report on the Initiative that provided further ammunition for critics. A brief analysis follows:
Technology: The Administration claims to have "expedited" implementation of Section 508 of the federal Rehabilitation Act, which requires all federal government information technologies to be accessible to people with disabilities. It's unclear what the "expediting" accomplished, but most of the work on this was already done under the Clinton Administration. Bush also obtained some new funding for technology research, but none for critically-important dissemination.
Education: The Administration did support and obtain a large increase in IDEA funding and is requesting another, somewhat smaller increase, next year. However, both amounts still fall far short of the promised full funding. A "comprehensive reading program" was established for primary school children: it includes some promotion of intensive reading remediation programs for kids with specific learning disabilities. A Presidential Commission on Excellence in Special Education was created, but the man appointed to lead it is a former Iowa Governor who has said he believes that many children with disabilities can't learn and money should not be spent trying to teach them.
Employment: Bush says he's promoted swift implementation of the Social Security Administration's Ticket to Work program, which provides vouchers ("tickets") that SSI and SSDI recipients can use to purchase vocational rehabilitation services without going through state VR agencies. However, implementation of this program has been anything but swift. VR provider agencies aren't much interested in participating because of the program's funding mechanisms: agencies can get higher levels of funding, but only several months after they've placed and kept someone in a job; if they want cash on hand to actually pay for the services as they go, they will get a smaller total payment. The first option poses unacceptable risks that discourage working with the people who need the services most; the second doesn't provide enough money to work with any but the easiest-to-serve consumers. Bush also got $20 million in new money to help states buy computer equipment and software for people with disabilities who get telecommuting jobs, and increased funding for state VR agencies.
Community Access: Bush was successful in getting some small pilot programs for community-based services for children with mental health disabilities and for adults with physical disabilities funded, but this is a far cry from a comprehensive solution such as MiCASSA, which he continues to refuse to support. He also claimed credit for a HUD program to let people use Section 8 housing subsidies for mortgage payments on their own homes, a project that actually began under Clinton. The progress report also says Bush requested funding for several other projects that was not approved by Congress, but leaves out the fact that the main reason for this was the irresponsibly massive federal tax cuts he obtained last year.
Assembly Passes One House Bills
A. 4884-a: Adds lease, purchase, rental and maintenance of a motor vehicle to the list of services to be provided by voc rehab agencies when necessary to enable a consumer to achieve his/her employment goals.
A. 4885-a: The "public entities" bill, which inserts the ADA's Title II provisions prohibiting discrimination on the basis of disability by state or local government into NYS Human Rights law.
A. 5971-b: The "sovereign immunity" bill, which formally waives New York State's immunity against lawsuits under the ADA.
A. 7536-a: Creates an interagency coordinating council for services for people who are deaf or hard-of-hearing.
A. 9913-a: The "most integrated setting" bill (see "Could We Actually Be Getting 'Most Integrated Setting'?").
We've covered most of these bills in recent issues of AccessAbility, and we've also explained one-house "show" bills (Summer 2001). What's interesting this time is that all of these were passed on June 12, the Assembly's Disability Awareness Day. In contrast, the Senate's Disability Awareness Day took place unannounced, unnoticed, and without any legislation being passed, in May.
Could We Actually Be Getting
"Most Integrated Setting"?
The bill would create a "Most Integrated Setting Coordinating Council" to evaluate all of the state's disability service systems and develop a plan to ensure that people with all disabilities of all ages will have the opportunity to "reside and function in the most integrated setting possible." The written plan would have to be completed within one year of when the bill takes effect. The plan would also be evaluated by an independent agency with experience in the field of community-based supports, to determine whether it is adequate, within three years of enactment. The plan must: include counts of people with disabilities now in institutions who are eligible for community-based services and the number of those already in the community and receiving services; consider how well current systems are working for people in various disability groups; and describe any improvements necessary to ensure that anyone who is eligible for community-based services can get them. Service gaps would be identified and solutions recommended to close them. The plan would have to propose a system to have a single agency in each county use the same uniform assessment tool to determine the needs of people with all disabilities of all ages who are seeking support services.
The Council would include the commissioners of all NYS agencies that serve people with disabilities or senior citizens. It would also include 3 people with disabilities (one each appointed by the Governor, Assembly Speaker, and Senate President), 3 experts in community-based services for people with disabilities, and 3 experts in community-based services for senior citizens.
What does this mean? Disability advocates are rightfully skeptical about "plans" that contain no definite actions. However, this bill could produce important results: For the first time our leaders would have to think about virtually every disability-related issue all at once, in an organized way, with the single goal of maximizing integration. Done right, it could put an end to agency turf wars, inconsistencies in eligibility processes and requirements, and the creation of new segregated facilities or programs out of misguided paternalism or as "pork" for powerful constituents. At last, everybody will be on the same page. The single uniform assessment system could ensure that local agencies will no longer be able to line their pockets by using misinformation to channel people with disabilities into the segregated programs that they operate. The inclusion of senior citizens means that a very powerful sector of society will be involved in developing and promoting integration-oriented policies and programs. The huge gap in community-based services for people with physical disabilities that are not developmental or the result of traumatic brain injury could be eliminated, and more individualized and truly-integrated supports for people with mental disabilities or forms of dementia would be developed.
What's the downside? Well, there's no requirement that the plan to be created must ever actually be implemented. While it's clear that nothing of importance could get done without having the top decision-makers from each agency involved, the limited participation by consumers on the Council could result in back-room deal-making that doesn't really move the integration agenda. The bill's language does not clearly indicate that group homes are segregated institutional settings or directly address OMRDD's failure to track people in its group homes who want to move out. There is no money attached to the bill, but inevitably the plan will state that new services must be developed and paid for. Of course, the money should come from a phased plan to close segregated programs, but that has been a very difficult idea to sell. And finally, because it would force politicians and agency heads all to march to the same drummer without regard for what nursing home lobbyists, campaign contributors who run segregated residential programs, and public employee unions want, and it would require state agencies to reform policies in ways that reduce the independence of bureaucratic fiefdoms, there will be powerful lobbyists, politicians and officials trying to kill or fatally weaken this bill.
However, the tide is turning, at both ends of the age spectrum. The new generation of parents wants nothing to do with segregated programs for their children with developmental disabilities. And the baby boomers who are rapidly expanding the ranks of the senior community--and the AARP--want nothing to do with nursing homes. Stay tuned: major fireworks to follow.
Election Reform Down to the Wire
The Senate bill requires that all voters be able to review and change their voting choices before committing them. It also requires that voters whose eligibility is in dispute must be allowed to cast "provisional" ballots on election day; if it is later found that a voter is not eligible, his/her ballot would not be counted. The Senate's accessibility provisions include: at least one accessible voting machine in every polling place, fully paid-for with federal funds, by 2007; people with disabilities, including those who are blind, must be able to cast secret ballots (which implies that voting machines as well as voting booths must be fully accessible); the federal Access Board will set voting access standards; $100 million (80% federal, 20% state) will be made available to make polling places accessible; the federal disability protection and advocacy system will get $10 million to provide technical assistance and monitoring on polling place access. However, in a major setback, the Senate approved an amendment that exempts communities of fewer than 50,000 from the accessibility requirements. In the Southern Tier, this could mean that only Binghamton would be guaranteed accessible polling places. Some advocates are also concerned about the bill's voter identification requirements, which are intended to prevent voting fraud. There is confusion about the extent to which the bill would actually require photo IDs from first-time voters, and some groups believe the requirement will be used to discriminate against people of color.
As we went to press, a House-Senate conference committee had been appointed to produce a compromise bill. Disability advocates were fighting hard to get rid of the small-communities access exemption. Meanwhile, in New York State, there was no progress on election reform because, as usual, all attention was focused on the budget. There is still concern that state officials will require voting machines that are both less accessible and more expensive than those recommended by disability advocates.
Institutional vs Community Costs in
New York State
|OMH State Psychiatric Center||
|OMRDD ICF/Developmental Center||
|Nursing Home/Skilled Nursing Facility||
|OMRDD Group Home (IRA)||
|OMH Adult Home||
|OMH Community Residence||
|OMRDD/DOH TBI HCBS Waivers||
We Have an IDEA, But Do We Really Have a Clue?
There is much discussion about whether the current IDEA is effective and what, if anything, should be done to change it. Like most American public debates today, this one comes down to whether government should do more or less. Those on the "less" side feel that IDEA has been a tremendously expensive paperwork nightmare that lets dangerous kids get away with violence, lets crafty parents finagle more than their fair share of school support for their not-always truly disabled children, encourages people with disabilities to believe they are entitled to special treatment throughout their lives, and creates an adversarial relationship between educators and parents. Those on the "more" side believe IDEA is basically a good law that has been poorly funded and enforced, and that this should be corrected by the reauthorization.
We at STIC agree with some of the points on both sides. However, agendas other than getting a better law seem to be driving the debate. Many politicians just want to push a states' rights/local control ideology regardless of its practical effects on real schoolchildren, and many disability advocates are responding by manning the barricades with a "don't change anything" defense. Based on past IDEA debates, we'd bet that those behind the barricades will win, but the result will be a tragically squandered opportunity to finally get special education right.
Our extensive experience with special education over the past 20 years has revealed a very serious and stubborn problem that manifests itself in three related ways:
The problem is that IDEA forces parents to negotiate for every aspect of educational services for children with disabilities, but guarantees nothing. The only real, enforceable requirement is that paperwork documenting these negotiations must be created. Unfortunately, most of the parents we see are ill-equipped to negotiate successfully. Many are low-income, two-earner, not-well-educated families who can't get enough in-home supports for their children; some of their marriages are under serious stress or have ended as a result. Most are dealing with school districts that regard students with disabilities as a problem and a burden; these districts' routine response is to send the kids off to segregated programs run by BOCES. We constantly see parents who want their kids to get individualized supports in regular classrooms ganged-up on, manipulated, demoralized and defeated by CSEs that are stacked with school officials who are under orders to minimize costs. Many regular-education teachers don't like and don't want to teach children with disabilities; many more are well-meaning but can't get adequate training or support from their districts.
Like everything else in IDEA, the LRE is only a "suggestion", not a requirement. Districts need only provide a written explanation of why they are exiling students to the "special school" or the "resource room"; there are no significant consequences for failure to integrate. Overprotective and misinformed parents are permitted to send children with behavioral or communication disabilities to special programs without even trying to see if they can succeed in a regular class with truly proper supports. When a savvy parent manages to get an inclusive placement, the supports are often so haphazard, the staff so poorly trained, and the willingness of teachers and administrators to make changes to resolve problems so completely absent, that many families give up and send their kids to segregated programs where, they think, they will at least learn something. Without a non-negotiable, militantly-enforced requirement that a high-quality, good-faith effort be made to include every child in a regular classroom unless and until it is clearly demonstrated that it won't work, districts have no incentive to properly train, support, and, when necessary, discipline their staff.
IDEA also lets schools get away with not providing basic, uniform access for students with disabilities. As we have said repeatedly: all blind children MUST learn braille beginning in first grade (this has been rectified in New York, though not in all states); all deaf children MUST have qualified sign-language interpreters or sign-language-fluent teachers (and culturally-Deaf children MUST have the option of attending high-quality Deaf schools); all school buildings MUST be fully accessible; all children who cannot read ordinary paper books or use ordinary writing implements MUST have access to appropriate assistive technology. These things should never be matters for negotiation; they should be black-letter law.
Now let's look at the issues in the national debate:
Learning, behavioral, and emotional disabilities: Most kids in special education today are there because they are classified in these categories. Our experience supports the scholarly researchers who say that these categories are dumping grounds for an expanding group of children who are misunderstood and difficult to teach for a variety of reasons. Not all of those reasons meet a layperson's definition of "disability," but that doesn't mean a school isn't responsible for doing whatever is necessary to teach these kids. We know that impoverished households, uneducated or neglectful parents, and ineffective teaching actually cause some forms of specific learning disabilities, because what and how you learn, beginning at a very early age, permanently changes the structure of your brain. We also know that the home environment plays a central role in how kids behave, and drugging kids is not a substitute for teaching, and expecting, them to control their behavior. Research has shown that there are some very effective, if expensive, early intensive intervention strategies that can largely correct these problems in young children so they won't spend their lives being labeled and hobbled by reduced expectations. But as long as schools can permanently send such kids to segregated programs, many regular classroom teachers will try to get them "classified" in order to get rid of them.
The "less" side says, "Okay, so let's not classify these kids as disabled at all, and maybe schools will provide the appropriate intervention out of the goodness of their hearts." The "more" side says, "Don't change IDEA's requirements for these kids in any way, and beef up enforcement."
STIC says: Everyone would be better served if schools treated all students, not just those with disabilities, as individuals, and provided whatever level of intervention and support is necessary for them to learn. However, it is naive (and probably a deliberate strategy to distract people while IDEA is fatally weakened) to argue that such a result is going to be achieved by any federal education law passed in the current political climate. So let's try this: IDEA should require every child with a medical/psychiatric/psychological diagnosis in these categories to undergo intensive individualized early primary-school intervention, at school district expense (fully funded by federal IDEA money), for a reasonable period of time. Such interventions may require some "pull-out" from regular classrooms. They may also require strong family involvement, and districts must provide effective outreach and training for these kids' families. After the intervention, the children will be evaluated to decide whether they'll be "classified". If a child is classified as having a disability, that child will have an IEP and receive effective supports in a regular classroom setting. If the child does not make significant progress on IEP goals, the state government will be required (on pain of loss of federal education funds) to impose a progressive disciplinary process on the district, beginning with requiring a plan of corrective action, and ending with regular education aid (don't penalize the child for the school's failure), being cut.
Racial/ethnic discrimination and incidence of disabilities: The evidence clearly shows that a higher proportion of minority kids are classified as having disabilities than white kids. However, evidence also strongly indicates that school districts that serve mostly minority kids classify them at a substantially lower rate than non-minority districts, while districts that are mostly white classify minority kids at a much higher rate than average. It looks like there is some simple racism going on in these white districts. It also is likely that many minority children, who are disproportionately low-income and living in poorer districts, are having their learning/emotional disabilities created by their home and school environments, as described above. Fortunately, the solution suggested above should work for both racism and environmental issues.
Discipline: The "less" side has claimed for years that IDEA's requirement that schools must educate all children with disabilities, including those whose disabilities can cause violent behaviors, disrupts school life and creates double standards whereby disabled kids get away with things that nondisabled children do not. Actual research indicates that in an overwhelming majority of school districts, that is simply not true. It's quite likely that districts with these problems are simply incompetently run. It is certainly true that if a child, disabled or not, "acts out" in order to escape schoolwork or the school environment, then letting him or her escape through suspension, expulsion, or transfer to a "special school" is precisely the wrong thing to do. Since the majority of these problems occur in kids with emotional or behavioral disabilities, early intensive intervention should, over time, greatly reduce the number of kids who are dangerous in our schools. In the meantime, STIC agrees with the "more" side that no ground should be given on this issue, and that full federal funding of IDEA should make it possible for problem districts to get the training they need to handle these issues appropriately. STIC also agrees with the "less" side that schools should be evaluated on the outcomes of their special education programs, and that schools that can't successfully help kids with emotional or behavioral disabilities learn to manage their behavior should have their funding cut--however, regular education aid is what should be cut, not IDEA money targeted for these kids.
Vouchers: The "less" side has been on a school voucher kick for years, and is now suggesting that parents of children with disabilities should be given vouchers so they can have a "choice" of which school to send them to. It is said that this will help reduce adversarial tension between parents and schools and let parents find what they need on the open market. STIC agrees with the "more" side that this is a bad idea. First, it would mean that no one is held accountable for delivering a quality FAPE to a child with a disability. Vouchers might enable families to send their kids to the best available option, but voucher programs do not require any school to actually provide good services. The "best available" in many regions may be quite bad, and without outcome standards and enforcement, may stay that way. Second, no voucher program today provides enough money for a family to "choose" the best schools, and voucher promoters, whose real goal is often simply to cut government spending and school taxes, constantly shrug this off. The experience of most families with voucher programs is that the only "choices" their voucher will pay for are the public school or the cheapest and shabbiest religious schools. There is no reason to believe that a voucher program for children with disabilities will work any better. In fact, since private schools cannot be required to accept students with disabilities under current law, they may work far worse.
Both the House and Senate have held IDEA hearings in recent months, and have heard a balanced variety of views. The Senate hopes to introduce a bipartisan IDEA bill on the floor in June. House leaders say they plan to get a bill through various committees sometime before the end of the current session, but won't predict when it will come to the floor. It is unlikely that any House bill will be a bipartisan effort. This being an election year, it's fairly certain that if both sides dig in and fight hard, Congress will postpone action until next year rather than passing something that will alienate voters on either side. Meanwhile, advocates have targeted New York Senator Hillary Clinton because she seems to be in favor of weakening IDEA discipline requirements; she has been saying that many New York teachers, who have to deal with large classes of culturally and economically diverse children, have too much on their plate and should not be expected to handle behavior problems.
SELF HELP ISSUES & ANSWERS
Making the Best of a Bad Situation
Sometimes, though, the nursing home becomes inevitable, at least for a short while. If that happens, it's critical for the friends and family "on the outside" to take steps to make sure that the experience isn't more miserable than it absolutely has to be. These steps don't just come from STIC's pro-integration mindset; these are hard lessons learned by actual people who used to believe that nursing homes aren't such bad places. And if, after looking over these steps, you get the idea that maybe the nursing home isn't such a good idea after all, so much the better!
- Don't sell the house for as long as possible. One of the biggest problems for people who want to leave nursing homes is that they no longer have a home to return to. Fixing that takes a lot of time and money; it's much better to keep the house in case the opportunity arises for the person to go home.
- Before choosing a facility, not only should you visit it several times, you should thoroughly check out its reputation in the community: find out about its financial stability and support, who is on its Board of Directors and what are their connections. Find out if it offers activities and social events that your relative actually likes. Is it near good public transportation and/or cultural and entertainment places that your relative enjoys, such as libraries, theaters or sports stadiums? Insist that background checks be performed on all staff who will have anything to do with your relative. If the home doesn't do that, find another home, immediately! You are looking for a financially stable, professionally-run place that looks--and smells!--clean, that provides high-quality staff, proximity to the outside community, and plenty of social and mental stimulation for your relative. When you've collected all this information, sit down in a quiet place with plenty of time for thought, and ask yourself, honestly: Would I want to live in this place for an indefinite period of time? Would I want to eat there? Sleep there? Socialize with the people there? If the answer to any of these questions is no, look at more places.
- Once your relative is inside, monitor the nursing home constantly. Live near it so you can make frequent unannounced visits at all hours of the day and night. Nights can be especially revealing; are there a lot of confused people wandering the halls with no staff around? Work near it too, so you can get there quickly in an emergency. Go there on holidays to make sure they have enough competent staff. Stop in unannounced for all three meals: Is the food properly warm or cold? Are the meals balanced? Do they comply with doctors' orders and your relative's preferences? Are the dishes and tables clean? Use your relative's bathroom, not the one for visitors, while you're there. Is it clean? Is there an emergency call bell? Is it accessible? Is the floor slippery when wet? Get to know the other residents; find out who your relative's friends--and enemies--are. Don't make all these visits yourself; the staff may start to recognize you and make things look better than they are when they see you coming. Instead, recruit relatives and friends to spot-check. And, if you can, become friends with a nursing home employee so they will watch out for your relative when you aren't there.
- Don't rely on the home's medical staff. Make sure you have the time and money you need to take your relative to their own, trusted, doctors. Be sure that a good-quality major hospital isn't too far away, and that your relative is taken there for specialized care; that's especially important in most smaller towns in upstate New York. You're okay around here if your condition isn't unusual or complicated, but if it is, you'd best go to one of the big cities.
- Give your relative a phone with large numbers and program a single button to call your number; this may help him or her feel safer.
- Keep records of all the medications your relative receives, including purpose and dosage, and check their chart frequently to make sure that they are actually given. If there is a sudden change in your relative's emotional demeanor or physical appearance or abilities, the first things to look for are medication interaction problems and errors. It's common for two or more doctors to prescribe meds that should not be combined because they aren't keeping track of everything your relative takes. It's also common for the staff who dispense the meds to be poorly trained and paid; that's a recipe for serious error or worse.
- Give your relative a lockable safe or chest where they can keep treasured valuables--not just money, but photos, letters, and other personal mementos. This won't stop the staff from stealing the key and getting into the box (that's what unannounced visits and background checks are for), but it will keep confused, wandering residents from taking stuff that they think is theirs.
- If you talk about your relative's old home and they start crying or become depressed, it isn't a sign of dementia. It means they want to go home and you should do everything in your power to get them out. If you can't get them out, then you shouldn't bring up the subject with them.
- Take your relative out for meals and other things often; everyone needs a change of scenery and these outings can be rejuvenating.
- Remember, none of these steps is going to make the nursing home a "good" place for your relative. The only good place for your relative is in their own home in their own community. But following these steps can help prevent some of the worst horrors of institutional living.
If you don't show up for your medical or other appointment, you are not showing your respect because the office you are supposed to go to has to pay an interpreter for nothing and they don't get paid for your business. The more you miss appointments, the more they don't have respect for you and the Deaf community. Every Deaf person represents the whole Deaf community. If one Deaf person doesn't show respect, it does affect all the Deaf community. Please be respectful and let your appointment know if you can not go, not one hour before, or after the appointment. Let them know one day before, or early in the morning would be much appreciated, but tell them ahead of time so they can cancel the interpreter and not waste time and money.
Now Carrie's job is to get you an interpreter and she always does her best to do her job to make sure you all have an interpreter for your appointments. We have more than 300 deaf people in our community--including Tioga, Broome, Chenango, other counties and PA. We only have less than 10 free-lance interpreters for 300 deaf people who need interpreters every day. You have to understand that 10 interpreters are not enough to make 300 deaf people happy. We must work together to make everyone's life easier. If Carrie calls you back or emails you that there is no interpreter available, do not get mad! You need to be very understanding and change your appointment so you can have an interpreter. Remember, Carrie and all the interpreters have family at home too. Please respect their privacy. If it is an emergency, call the emergency interpreter pager, (607) 774-4780. Don't call them at home, emergency or not. Be respectful.
So far, I have been very busy learning and doing advocacy for you all. I am enjoying my job. Every day I'm learning something new. My job is to make sure everyone is independent, not dependent on me. My job is also confidential and if you feel I'm not doing my job, you can let me know or talk to my supervisor, Sue Link. Call either of us at 724-2111 (voice/TTY), email me at email@example.com, or email Sue Link at firstname.lastname@example.org. Thank you for your respect!
New Dental Service
Issue No. 67
- OH Adult Home Scandal Blows Up
- Find the Facts!
- STIC NEWS
- Annual Campaign Strikes Again
- STIC Awarded DOH TBI Contract
- STIC's Five Year Advocacy Plan
- STIC Staff
- NEWS & ANALYSIS
- ADAPT Challenges the New Freedom Initiative
- Assembly Passes One House Bills
- Budget Update
- Could We Actually Be Getting 'Most Integrated Setting'?
- Election Reform Down to the Wire
- Institutional vs Community Costs in New York State
- We Have an IDEA, But Do We Really Have a Clue?
- SELF HELP ISSUES & ANSWERS
- Nursing Homes: Making the Best of a Bad Situation
- DEAF NEWS
- Linda Land
- COMMUNITY PROGRAMS
- New Dental Service