AccessAbility

STIC welcomes some new and returning staff members, and says goodbye to others, as we continue to grow and change in response to the needs of people with disabilities. Several of these folks are part of the STIC family in more ways than one.

Mimi Reitsch, Service Coordinator

This will serve as my letter of introduction to the ranks of the STIC army of personnel. I am the newest recruit to the Service Coordination Department. I have a rather varied background; I was trained and practiced as a Genetic Counselor for seven years before hanging up my charts to enter the world of business as the owner of the CyberCafe West for the last seven years. Do you feel a trend? I have now circled back to work again with the families and children I have known and missed. It's great to be back. At least for the next seven years...

Jesse Bishop, Peer Counselor and Development Assistant

Jesse recently moved from Dundee, NY, where he was the Village Justice. He was also formerly employed at the Arc of Schuyler County in Watkins Glen. He's a newlywed residing in Binghamton with his wife Nadine, who is a service coordinator at STIC. Jesse is gradually taking over the editorship of this newsletter, grant-writing, and other writing-related tasks so Ken Dibble can focus on his growing workload as computer network administrator and programmer.

Carole Kramer, Benefits Advisement Coordinator and Employment Specialist

Carole replaces Ray Pierce, who has moved out of state, and Mia Ossorio, who has left to take a job as a UHS Hospitals discharge planner. Carole, brother of STIC Psychotherapist Charlie "Gotta Minute?" Kramer, has been with us before as a service coordinator, and is very happy to rejoin STIC.

Bob Bennett, Independent Living Skills Coordinator

Bob takes over from Demetrios Kiyimba. He'll be working to recruit, train, and supervise individuals to provide independent living skills training and community integration "bridging" services to people whom we assist to be released from institutions.

Welcome one and all!

April 17, 2002
Session 1: 1:00 - 3:00
Session 2: 5:00 - 7:00
Attention Teachers, Parents and Students:

This is an opportunity to have all voices heard and an important step toward improving inclusive education. The purpose of this public forum is to determine the current status of inclusive education in the Southern Tier.

If you are committed to inclusion, this is an opportunity to hear the experiences of others and/or to have your voice heard by a panel willing to listen. All testimonies must be no more than five minutes in length and can be oral or written.

Remember, effective communication is the first step toward effective change and it cannot be done without you.

If you would like to submit written testimony to have presented at the forum or have any questions, please contact Jennifer Ayala, Systems Advocate, at 724-2111 (voice/TTY) or advocate@stic-cil.org

Bush's Budget

President Bush's proposed 2004 federal budget contains both very good news and very bad news for people with disabilities. In this article we'll cover the items on which we've got reliable factual information so far. We're still sorting through speculation and interest-group bias on some other points, and we'll bring you more information in future issues of AccessAbility.

Good News

The most exciting proposal would provide $1.75 billion over five years to help states transition people out of nursing homes. The "Money Follows the Individual" Rebalancing Demonstration would pay 100% of first-year Medicaid waiver costs for each person with a disability who transitions out of a nursing home. After the first year, the state would pay its standard share for Medicaid homecare services.

This is actually even better than it sounds. New York spends, on average, over 5 times as much money to keep a person in a nursing facility as it would cost to support that same person in their own home-once they're set up in that home. The great thing about Bush's proposal is that it removes the only possible fiscal objection that state officials could make to getting people out of nursing homes-the relatively high initial cost of the move. The first year is the most expensive, because people need to cover costs for making a house or apartment accessible, for things like furniture, cooking items, and security and utility deposits, and for service coordination to manage the transition process, on top of the ongoing attendant services costs. In later years, all they'll need is the personal assistance services. For New York State to take advantage of this program, it needs to enact the new Most Integrated Setting waiver program described here.

The Rebalancing Demonstration is part of Bush's "New Freedom Initiative" for disability policy. Additional good--or at least okay--ideas from this initiative include:

$220 million over five years for demonstration projects, including demos of caregiver respite services and community-based services for children with mental health disabilities. We know this stuff works already, so "demonstrations" aren't needed--but the money is.

A spousal Medicaid eligibility exemption that would let spouses of people with disabilities who get jobs retain Medicaid eligibility. This will remove the threat that some people face in a society without universal health insurance that going to work will put their spouses in danger.

Presumptive Medicaid eligibility would be granted to people discharged from hospitals who would be nursing-home-eligible; this would let them use community-based supports immediately rather than being discharged to nursing facilities, where they may languish for months awaiting approvals while their health deteriorates and they lose their homes.

The Systems Change grant program would be expanded with another $40 million; states can use this to reform their long-term care service systems to eliminate institutional bias.

Bush also wants a $1 billion, 9.5% increase in Individuals with Disabilities Education Act (IDEA) funding. This is significant because most of the other non-defense-related increases he asks for are held to less than 4%. It's not the "full funding" for IDEA that Bush said he favored during his election campaign, but it would be very welcome in light of Governor Pataki's plans to pull IDEA money out of direct services for students and use it to fund the education bureaucracy instead.

Bad News

The most dangerous proposal in Bush's FY 2004 budget is his Medicaid "reform" plan, a revival of Newt Gingrich's failed mid-1990s attempt to end the Medicaid entitlement and block-grant the funds to the states. This time, though, it's being offered with a deceptive "hook" for states that are struggling with massive budget deficits. States would get a "choice"--they can opt for the block grant and get a lot of extra money to help with their deficits, or they can continue the present system without any extra federal help.

What is the present system? Medicaid is an "entitlement", meaning that it's available to as many people as are eligible for it, and services must be available statewide with comparable quality and quantity to privately-funded medical services. There are minimum eligibility standards and mandatory services that must be provided. Federal funds are provided for both the mandatory services and a broad array of "optional" services and recipients that a state can choose to support. States must contribute a "matching" payment. New York State's share is 50% (split with county governments in various ways for different services). In poorer states, it's less. The fiscal problem here is that the federal and state government must contribute the match for each recipient, and as the number of recipients and the costs of medical products and services increases, so does the state share. In the current economic climate, this is very tough for most states, which, unlike the federal government, must have balanced budgets. The human problem is that most of the "optional" services, such as the least expensive form of homecare, prescription medications, prosthetic devices, rehab services, service coordination, and the Medicaid Buy-In, are essential for the independence and productivity of people with disabilities. Without them, people with significant disabilities would be confined to nursing homes and hospitals, if they survived at all.

What is Bush proposing? The Medicaid entitlement would end. Federal money would go to states in two linked block grants--one for hospital and outpatient services, and one for long-term care. States could shift money back and forth between them to some extent. Percentage-based "matching" payments would be replaced by "maintenance of effort" rules whose purpose is allegedly to keep states from making drastic cuts. The reliability of this is doubtful, because the new system would be difficult to monitor and because the federal share would be capped for ten years, forcing states to deal with rising costs on their own. How would they do that? It appears that some services would remain mandatory, but states would be free to set their own eligibility standards for income and/or disability (including excluding people with "pre-existing conditions"), and the "statewideness" provision would be gone. Not only could states drop "optional" services, they could create systems where only the most basic emergency and preventive services are available, only to people without chronic medical needs, and only in easier-to-reach parts of the state, such as large cities. As for long-term care, states would be even more free than they are now to cater to nursing home lobbyists and public employee unions.

Few of these terrible things would happen soon. That is the sinister beauty of Bush's proposal. States that adopt this new system would get a big chunk of extra Medicaid money over the next few years to cushion their deficits ($3.5 billion total for the first year, and another $9.2 billion over the following six years). Most likely, no state would cut Medicaid services much while the politicians who made the decision were still in office. But all of this money is only a loan. States would have to repay the entire amount to the feds over just three years, beginning in 2011. That's when the big cuts would come, and even if the economy is in better shape then, between the large numbers of baby-boomers requiring long-term-care, and the loan repayments, in most states those cuts would be drastic. Asked about that, Health and Human Services Secretary Tommy Thompson perhaps unknowingly revealed the Bush Administration's deceptive strategy when he reportedly said, "I won't be around to solve that problem."

One would think that nobody who understood the issues would bite on this idea. But we must also understand politicians, who generally do not look beyond the next election to consider the long-term effects of their actions. There may be an element of strategy involved here too. The Bush Administration may be planning take the loan repayment off the table when the battle heats up, making the second choice look a lot better to some people. We have heard from a New York Congressman that Governor Pataki has publicly expressed support for the idea, and a showdown is shaping up between ADAPT and the US Governors' Association over the issue.

There is some bipartisan support for alternatives. NY Democratic Senator Schumer and Republican Senator Olympia Snow (ME) have introduced a $40 billion one-time aid package for states facing budget deficits. While this bill doesn't specifically target Medicaid costs, it would provide $2.5 billion to New York, to be split fifty-fifty between the state and county governments. Even more promising may be the "State Budget Relief Act of 2003", which has bipartisan support in the Senate and would increase the federal Medicaid rate. There is also a slightly different, but still bipartisan, version of this bill in the House. Any of these would be a better option than Bush's proposal.

Tech Act

Funding for the Assistive Technology Act would be completely eliminated in 2004; Bush feels the act has "served its purpose". This money funds STIC's Technology Related Assistance to Individuals with Disabilities (TRAID) program, which assists people to figure out what sorts of assistive devices they need and how to get them. It's a busy, well-used service that has benefited hundreds of people over the years.

by DBPC Members

The Disability Budget and Policy Coalition (DBPC) is a statewide organization that represents a broad range of disability advocacy groups. Principal members include the Eastern Paralyzed Veterans Association, Housing Works, New York State Independent Living Council, New York Association of Psychiatric Rehabilitation Services, Disability Advocates, Inc., New York Lawyers for the Public Interest, the Center for Disability Rights, and STIC. Many other organizations have endorsed the DBPC Agenda, which reflects the unified voice of New Yorkers with disabilities.

The mission of the nonpartisan DBPC is to work together to meet the needs of individuals with disabilities and their family members. Our focus is on cross-disability issues that foster greater community integration, promote consumer control and choice and empower people of all ages and disabilities to realize their dreams of inclusion and independence. We seek enactment of legislation and/or budgetary initiatives that will support and advance these goals.

Due to space limitations, we can't present the full agenda here. What follows is the full text of the highest-priority items, with brief summaries of the rest.

"MOST INTEGRATED SETTING" WAIVER PROGRAM
In 1999, the United States Supreme Court held in Olmstead v. L.C. that unnecessary segregation of individuals with disabilities in institutions constitutes discrimination based on disability because it perpetuates unwarranted assumptions that people with disabilities are incapable or unworthy of participating in community life. Confinement in an institution severely curtails everyday life activities, such as family relations, social contacts, work, educational advancement and cultural enrichment. People with disabilities are entitled to live freely and enjoy all of the same liberties as other Americans. They deserve to live in an environment best suited to their individual needs.

The court ruled in Olmstead that the Americans with Disabilities Act requires states to provide community-based rather than institutional services for people with disabilities. The Medicaid program is significantly biased toward funding long-term care services in institutions rather than in home and community-based settings. 75% of Medicaid long-term care funds pay for services in nursing homes and intermediate care facilities. Only 25% of Medicaid long-term care funds pay for home and community-based services. The Most Integrated Setting (MIS) law passed by New York State in 2002 was a first step to address this issue. The MIS law will help to ensure that New York plans its disability services in a comprehensive manner and with a common goal of maximum integration. However, we already know that New York has a critical gap in community-based services that needlessly inflates long-term care costs for many people with disabilities by over 500% note 1, by forcing them into nursing homes because no community-based alternatives exist. We can act now to end this fiscal and human nightmare, while empowering people to make real choices within the community and turning recipients into taxpayers.

New York State should establish a Medicaid waiver program to allow people with disabilities of any age currently not eligible for any existing Medicaid waivers to be served in the most integrated settings appropriate to their needs. The waiver would fund housing modifications, assistive technology devices and services, transition services, and personal assistance ("homecare") services. Essential features would include: Ability to terminate case management/service coordination once the person with a disability is stabilized in their own home with appropriate services; a choice of either consumer directed or traditional personal assistance services; persons who need safety monitoring or supervision due to a cognitive disability such as Alzheimer's disease could participate; one-time costs of setting up a household, including furniture, utility and security deposits, moving costs, and similar items would be fundable for people transitioning out of institutional settings.

Since any Medicaid waiver program must have costs equal to or less than those of institutional services, this program is guaranteed to be cost-neutral and could save money. Costs should be determined based on the aggregate program and not on those of any one individual, so that waiver participants with the most significant disabilities will be allowed to exceed the average cost of institutionalization. Money will still be saved because the overall average of those living in the community would be less than if they were in more segregated settings.

RECOMMENDATION:

Establish a Medicaid waiver program to allow people with disabilities of any age currently not eligible for any existing Medicaid waivers to be served in the most integrated settings appropriate to their needs.

FISCAL IMPACT: BUDGET NEUTRAL - ANTICIPATE COST SAVINGS

CONSOLIDATION OF SUPPORTED EMPLOYMENT PROGRAMS
FOR PEOPLE WITH DISABILITIES
DBPC is issuing this revised position on consolidating Supported Employment (SE) programs in response to Governor Pataki's proposal to move Vocational and Educational Services for Individuals with Disabilities (VESID) and the Commission for the Blind and Visually Handicapped (CBVH) to the Department of Labor (DOL). This is NOT what DBPC had in mind. DBPC does not propose the relocation or consolidation of any agencies. We ask that Supported Employment programs be fully consolidated--including those now overseen by OMRDD, OMH, CBVH, and VESID--with one uniform set of definitions, regulations, and reports, and solely administered by VESID. DBPC opposes the Governor's proposal. DOL does not have the necessary knowledge or experience to provide services to people with disabilities. They have traditionally focused on short-term services, which are very different from the complex array of ongoing services needed by people with a wide variety of disabilities. And the Governor's plan does not truly consolidate anything; it simply physically moves two of the four agencies to a different location.

67% of people with disabilities are unemployed and therefore dependent on government-funded income supports. At this time of fiscal crisis, New York must make better use of programs that can reduce such dependence.

Supported Employment (SE) programs do this for people with disabilities by providing concrete supports for finding and retaining jobs. However, New York's administration of these programs is inefficient and redundant. Depending on the disability, SE services are available through VESID, CBVH, OMH and OMRDD. Each agency has its own set of regulations, definitions of disability, and documentation requirements, which often conflict with one another, resulting in confusion and unnecessary duplicative paperwork for providers. Additionally, each state agency conducts its own fiscal and programmatic audits, wasting a great deal of time and resources of the state and provider agencies. New York State should consolidate all supported employment programs for people with disabilities under VESID, with significant involvement of consumers, advocates and providers. This would establish one set of regulations and requirements for all disability groups and streamline administration and service delivery, producing significant savings, some of which could support more services for consumers. VESID has the most expertise in providing SE services to people with all types of disabilities, and is the best choice to house these programs.

New York's funding priorities for sheltered vs supported employment also increase state spending by promoting, rather than discouraging, dependence. NY funds sheltered employment services for individuals at twice the rate it pays for supported employment, creating an incentive to keep people with disabilities in segregated workshops (which often pay sub-minimum wage) rather than transitioning them to integrated jobs with competitive wages that enable people with disabilities to reduce their use of government services and become productive taxpayers. Many sheltered employment programs have tried to transition from segregated to integrated competitive services. While their philosophies and policies have shifted, the funding mechanism has not changed, forcing them to maintain their better-funded segregated programs in order to survive. New York State should allow funds to follow consumers from segregated to integrated/competitive employment opportunities, creating incentives and adequate resources to serve New Yorkers with the most significant supported employment needs.

RECOMMENDATIONS

- Oppose Governor Pataki's proposal to move VESID and CBVH to NYSDOL.

- Consolidate ALL supported employment programs for people with disabilities under VESID, with involvement of consumers, advocates and providers.

- Allow funds to follow consumers from segregated to integrated/competitive employment opportunities.

FISCAL IMPACT: BUDGET NEUTRAL - ANTICIPATE COST SAVINGS

REPEAL HOME CARE COST-CUTTING TARGETS
Each year, since at least 1995, the legislature has enacted so-called "cost-saving" targets that have required certain counties and New York City to save a specified amount of money in the state share of Medicaid costs for personal care and, in some years, certified home health care. The penalty for a district that failed to achieve the specified cost savings has been a dollar-for-dollar budget cut in the amount not saved. For example, in 1995 the cost-saving target for personal care was a $53 million cut from the State share of Medicaid, L. 1995 ch. 81 _ 93. The state share of Medicaid costs for Personal Care is only about 40% of the total cost of services, with 10% paid by the local districts and 50% by the federal government. In order to achieve the state's $53 million cost-cutting target, districts had to cut over $100 million in personal care expenditures. The 1995 legislation, which enacted the cost-cutting targets, was drafted in a way to put most of the burden of meeting the targets on New York City, along with Nassau, Rockland and Putnam counties. Since 1995, similar legislation has been enacted nearly every year, mandating cost-saving targets in varying amounts.

Existing targets must be repealed, and no further home care cost-saving targets must be enacted. First, the targets are not cost-effective because they target only community-based long-term care, while ignoring institutional long-term care costs. The targets force local districts to reduce home care costs - under threat of harsh fiscal penalties - even though home care cuts result in increased nursing home placements and costs. Medicaid nursing home costs in New York State increased by 11%to $5.1 billion from 1997 to 1999. note 2 In the same years, the cost of the combined Medicaid home care programs increased by only 8% to $2.5 billion. This failure to consider the effect of home care cuts on global long-term care costs is a gross fiscal error. Moreover, cutting home care causes ripple effects in other medical care costs, with increased medical and hospital costs for malnutrition and dehydration, fractures, and medical conditions exacerbated by lack of care.

In addition to not being cost-effective, the targets are illegal, violating the Americans with Disabilities Act (ADA) as interpreted in Olmstead v. L.C., 527 U.S. 581 (1999). Under the Olmstead decision, states must provide long-term care services in the community rather than in nursing homes when it is not an "undue burden" to avoid discrimination. The targets have led the affected local districts to cut home care services and make these services less accessible in certain parts of the state, forcing people into nursing homes in violation of the ADA.

RECOMMENDATION:

Repeal cost-saving targets that require certain counties and New York City to save a specified amount of money in the state share of Medicaid costs for personal care and sometimes home health care.

FISCAL IMPACT: BUDGET NEUTRAL - ANTICIPATE COST SAVINGS

VITAL PERSONAL CARE SERVICES
FOR PEOPLE WITH
ALZHEIMER'S DISEASE AND OTHER COGNITIVE IMPAIRMENTS
The State Department of Health and various local Medicaid districts have incorrectly interpreted state Medicaid law to permit them to deny personal care services needed by people with Alzheimer's disease and other cognitive impairments. This is the result, in large part, to a policy change in 1996 that defined personal care services solely as help with physical tasks, excluding the supervisory care of aides that had long enabled people with Alzheimer's disease and other types of cognitive impairments to remain safely at home. The state claimed that the exclusion of supervisory care of aides was needed for "safety monitoring" of a person with Alzheimer's disease. Although this was an abrupt departure from decades of practice in New York State, it was upheld by the United States Court of Appeals for the Second Circuit in Rodriguez v. City of New York, 97 F.3d 611 (2d Cir. 1999).

New York State must ensure that its Medicaid program does not discriminate against people with Alzheimer's disease or other types of cognitive impairments. Personal care services should be equally accessible regardless of whether the individual's need is caused by a cognitive impairment or a physical impairment. Denial of adequate personal care for people with Alzheimer's disease or other types of cognitive impairments will force them to be institutionalized even when care in the community is the most appropriate setting. Unnecessary institutionalization is not only contrary to longstanding state policy, but violates the Americans with Disabilities Act (ADA), as interpreted by the United States Supreme Court in Olmstead v. L.C., 527 U.S. 581 (1999).

Moreover, state law must be made consistent with the recent amendments of the Federal State Medicaid Manual by the Health Care Finance Administration (now called the Center for Medicare and Medicaid Services), which oversees the Medicaid program nationally. As amended in January 1999, the definition of "personal care" in the State Medicaid Manual clarifies that "An individual may be physically capable of performing ADLs and IADLs note 3 but may have limitations in performing these activities because of a cognitive impairment. Personal care services may be required because a cognitive impairment prevents an individual from knowing when or how to carry out the task. For example, an individual may no longer be able to dress without someone to cue him or her on how to do so. In such cases, personal assistance may include cuing along with supervision to ensure that the individual performs the task properly," HCFA State Medicaid Manual Section 4480 (Jan. 1999).

The state law should track this federal definition in order to ensure that personal care assistance is equally accessible, regardless of whether the individual's need is caused by a cognitive impairment or a physical impairment. The current definition of personal care services in the state social services law is general, stating that they are services of an aide "...as determined to meet the recipient's needs for assistance when cost-effective and appropriate...and when prescribed by a physician..." SSL 365-a (2)(e). It must be clarified that personal care services are those services that "meet the recipient's needs for assistance WITH ACTIVITIES OF DAILY LIVING AND HEALTH AND SAFETY NEEDS DUE TO HIS OR HER PHYSICAL OR COGNITIVE IMPAIRMENTS..." (Changes are in CAPITAL LETTERS)

RECOMMENDATION:

Mandate that personal care services be equally accessible regardless of whether the individual's need is caused by a cognitive impairment or a physical impairment.

FISCAL IMPACT: BUDGET NEUTRAL - ANTICIPATE COST SAVINGS note 4

INCORPORATE TITLES II AND III OF THE ADA
INTO THE NEW YORK STATE HUMAN RIGHTS LAW
The Americans with Disabilities Act of 1990 (ADA) is the most comprehensive law ever passed to protect the civil rights of individuals with disabilities. The ADA enables people with disabilities to participate more fully in their communities, compete effectively for jobs, travel, and gain access to the goods and services that most Americans take for granted. The New York State Human Rights Law includes some, but not all, of the ADA's protections for people with disabilities, causing needless confusion for government officials in attempting to comply with both statutes. Conforming the state statute to the ADA will clarify the obligations of government officials to take reasonable steps to ensure that their services, programs and activities are available to constituents with disabilities. Incorporating Titles II and III of the ADA into the New York State Human Rights Law will impose no new or additional requirements upon local government, since the local government is already responsible for complying with the provisions of the ADA.

The Assembly has passed legislation for the past several years that would clarify the scope of protections against discrimination on the basis of disability in the area of government services by incorporating Title II of the ADA into New York State's Human Rights law. Title II of the ADA prohibits discrimination on the basis of disability by public entities and certain transportation providers. State and local governments and any of their departments, agencies, or instrumentalities are required to make reasonable modifications to their policies, practices, and procedures that deny equal access to people with disabilities. State and local governments must ensure the program accessibility of their facilities.

Existing buildings need not be fully accessible, but their programs must be. Public entities must furnish auxiliary aids and services when necessary to ensure effective communication and may not place a special charge to cover the costs. They must eliminate unnecessary eligibility standards that deny people with disabilities an equal opportunity to enjoy their services. They may not refuse people with disabilities the right to participate in a service, program, or activity and must maintain these offerings in an integrated setting.

Title III of the ADA should also be incorporated into State statute. Title III covers the accessibility of public accommodations such as retail stores, restaurants, theaters, etc. Public accommodations must make any modifications that are readily achievable to allow people with disabilities the opportunity for equal use of goods or services offered. Several other states have already incorporated Title III language into their state laws and it is time for New York to do the same. This will impose no new or additional requirements upon businesses.

In 1997, New York State became a national leader by passing the Reasonable Accommodations Act, which reiterated ADA employment regulations as state law. It is time for the state to implement Titles II and III of the ADA and utilize the state's enforcement mechanisms through the Human Rights Law. This will bring state regulations into agreement with the ADA and assure people with disabilities full access under state law to all government programs and public accommodations.

RECOMMENDATIONS:

- Incorporate Title II of the ADA into the New York State Human Rights Law.

- Incorporate Title III of the ADA into the New York State Human Rights Law.

FISCAL IMPACT: BUDGET NEUTRAL

WAIVE STATE SOVEREIGN IMMUNITY TO ADA
AND SECTION 504 CLAIMS
New York should be a leader to our citizens with disabilities who seek equality and justice under the law. The United States Supreme Court decided in February 2001 that states are immune from claims brought under Title I of the Americans with Disabilities Act (ADA) by state employees with disabilities who have been subjected to illegal discrimination. Other courts have since found that states are immune from claims under Title II of the ADA, which covers all activities of state and local government, and from claims under Section 504 of the Rehabilitation Act, which prohibits discrimination on the basis of disability by recipients of federal funds. Although New York State and its agencies have previously been found by courts to have violated the rights of New Yorkers under the ADA and Section 504, millions of disabled New Yorkers can no longer seek redress for such violations.

The businesses, schools, cities, counties, towns and villages of New York State cannot violate the ADA or Section 504 without the prospect of being held responsible by a court of law for their actions. It is anomalous, unjust, and unfair that people with disabilities are fully protected by federal civil rights laws if confronted with discrimination by New York City, but have significantly less protection if confronted with discrimination by New York State. In June of 2000, the Assembly and the Senate both enacted resolutions recognizing the importance of the ADA in providing equal rights and opportunities to New Yorkers with disabilities. Last session, the Assembly passed legislation that would amend the Civil Rights Law to waive state sovereign immunity to claims brought under the ADA. Identical legislation was introduced, but never voted on by the full Senate. Both bills were strongly supported by our two largest public sector labor unions, PEF and CSEA. New York State must now reassume responsibility equal to that of its public and private entities and be held liable for discrimination against its citizens with disabilities.

We urge Governor Pataki and the Legislature to demonstrate their commitment to equal opportunity for all New Yorkers by restoring the protections against discrimination granted to people with disabilities under the ADA and Section 504, and eliminating this unjust and inequitable barrier to their enforcement. A law must be enacted waiving the state's sovereign immunity to claims brought against it under the ADA and Section 504. We can afford no less.

RECOMMENDATION:

Waive New York State's sovereign immunity to claims brought against it under the ADA and Section 504 of the Rehabilitation Act.

FISCAL IMPACT: BUDGET NEUTRAL

STATE REGISTRY OF AFFORDABLE, ACCESSIBLE HOUSING
Affordable, accessible housing is in great demand by people with disabilities. As the housing market has grown increasingly tight, the difficulty for people with disabilities to find affordable housing has mounted significantly. According to 1990 Census data, one out of every three New York renters cannot afford housing. The National Low Income Housing Coalition identified New York State as the least affordable state in the nation for one- and two-bedroom units in 1996 - 1998, and one of the least affordable states in 1999 - 2001. note 5 Beyond the creation of more affordable and accessible housing, the Disability Budget and Policy Coalition recommends that New York State create its own registry of affordable, accessible housing, similar to the one established in Massachusetts.

RECOMMENDATION:

Create a New York State registry of affordable, accessible housing.

FISCAL IMPACT: TO BE DETERMINED

SOURCE OF PAYMENT ANTI-DISCRIMINATION LEGISLATION
The New York State Disability Budget and and Policy Coalition strongly supports legislation that would ban housing discrimination on the basis of tenants' source of income. Given the shortage of low-income housing, it is very difficult to find affordable housing. The need for wheelchair accessibility in affordable apartments makes finding suitable living arrangements next to impossible. With affordable and accessible housing in such short supply, landlords must be prohibited from denying an applicant the ability to rent a unit based solely on the prospective tenant's means of payment for the apartment. The fact that the applicant receives government assistance cannot be grounds for a landlord's refusal to rent a unit.

Banning source of payment discrimination protects citizens most in need to find the most suitable housing arrangement possible. This discrimination is also making it harder for people trying to transition from welfare to work, and for working families with low or modest incomes. Twelve other states currently prohibit "source of income/payment" discrimination or Section 8-discrimination.

RECOMMENDATION:

Ban source of income/payment discrimination in order to protect New York's most in need citizens to find the most suitable housing arrangement possible.

FISCAL IMPACT: TO BE DETERMINED

ELECTION REFORM: ACCESSIBLE POLLING SITES AND VOTING MACHINES
In 1999, the Office of New York State Attorney General Eliot Spitzer teamed up with advocates on Election Day and evaluated the accessibility of polling places statewide; almost every county had problems. Months later, in February 2000, a Federal Court decision mandated that counties be responsible for ensuring the accessibility of polling sites.

During the last presidential election, "53 million Americans with disabilities watched as inequities in our fundamental right to vote unfolded across the nation. The situation in Florida was a microcosm of what the disability community has been experiencing--and demanding change about--for years." note 6 Luckily, the federal Help America Vote Act of 2002 (HAVA, or "The Act") provides potential solutions to many--though not all--of the problems people with disabilities have long endured.

on Election Modernization released the report Voting in New York in the 21st Century, containing recommendations for modernizing the State's election process. This non-partisan Task Force examined the current methods of voting and administering elections in New York and recommended alternatives that could be implemented to improve the process.

In addition to enacting the Task Force's recommendations, we must also fully utilize the opportunity that the Help America Vote Act presents, and improve upon its provisions.

RECOMMENDATIONS:

- Ensure that New York conforms to all the provisions of the Help America Vote Act (HAVA) and take full advantage of all federal funding promulgated for machine modernization, voter and poll worker education, a statewide registration system, and improved provisional voting systems.

- Implement the recommendations regarding access found in the New York State Task Force on Election Modernization report, Voting in New York in the 21st Century.

- Amend New York State Election Law  4-104. Specify that counties are responsible for guaranteeing the accessibility of polling places and provide mandated accessibility standards to ensure consistent access along exterior paths, entrances, interior paths and for the machines themselves.

- Eliminate the "full face ballot" requirement so that more of the modern voting machines will comply with State requirements.

- Eliminate the fee for non-driver's identification cards.

- Provide matching funds to counties for accessible voting machines and assist communities applying for federal money pursuant to HAVA. Provide a matching fund program for counties over a period of five years to assist them in making their voting machines accessible to all citizens. Funds would be provided to counties that can verify that the exterior paths, entrances, interior paths and the machines themselves are fully accessible.

FISCAL IMPACT: TO BE DETERMINED

EXPANSION OF SCRIE TO PEOPLE WITH DISABILITIES
The Disability Budget and Policy Coalition urges New York State to expand the Senior Citizens Rent Increase Exemption (SCRIE) program to include people with disabilities, making them eligible for the senior citizens' tax abatement for rent-controlled and rent-regulated property. In order for people with disabilities to lead independent lives, they need safe, affordable, and accessible housing. Yet, in New York City and the surrounding suburbs, this goal has become increasingly difficult in recent years, as New York State continues to experience an affordable housing crisis of tremendous proportions. According to recent statistics from the Census Bureau, one in four households in New York City spend more than half its income on rent.

RECOMMENDATION:

Expand the Senior Citizens Rent Increase Exemption (SCRIE) program to include people with disabilities.

FISCAL IMPACT: TO BE DETERMINED

NOTES:

NOTE 1: According to the most recent available figures, New York's total weighted average annual per-capita cost for all forms of nursing facility services is $78,110. The state's total weighted average per-capita cost for all forms of community-based services typically provided to nursing-home-eligible people is $13,754.

NOTE 2: Source: NYS Dept of Health Office of Medicaid Mgt., On-Line SURS Information Retrieval System, Medicaid Reference Statistics Federal Fiscal Years 1997-1999, Dollars, Services, & Recipients by Age, Aid Category & Geography (October 2000)

NOTE 3: ADLs are "activities of daily living" such as eating, bathing, dressing, toileting, transferring and maintaining continence. IADLs are "instrumental activities of daily living" including personal hygiene, light housework, laundry, meal preparation, transportation, grocery shopping, etc. HCFA State Medicaid Manual Section 4480 (Jan. 1999)

NOTE 4: People with Alzheimer's disease and other types of cognitive impairments who are denied home care must be placed in nursing homes at a higher cost than home care.

NOTE 5: Housing Policy paper found on the website of the Neighborhood Preservation Coalition of NYS - www.npcnys.org

NOTE 6: The Independent (A Publication of the Capital Distric Center for Independence, Inc.) 12/00 Volume 2, Issue 3

As part of his proposed budget legislation, Governor Pataki has included language that would severely weaken the Most Integrated Setting (MIS) bill that he signed in September, and which has not yet been implemented.

The MIS bill was signed following a dramatic Albany sit-in by members of ADAPT. It requires the state to develop a comprehensive plan to ensure that people with disabilities are served in the most integrated settings possible, in compliance with the US Supreme Court's Olmstead decision. The law creates a Most Integrated Setting Council whose job is to assess the current state of community services for people with all disabilities, identify service gaps, and develop plans to close them. The sit-in successfully forced Governor Pataki to abandon attempts to insert weakening language into the bill.

Now, however, in an astounding demonstration of bad faith and contempt for the disability community, Pataki is attempting to amend the law and reinsert the weaker language. The changes would:

1. Eliminate the requirement that hard data be gathered on how many people are in more restrictive settings than they need.

2. Eliminate the requirement that all people seeking residential support services have their needs assessed using a uniform tool administered by a single point of entry in each county.

3. Eliminate the requirement that the various state agencies that serve people with disabilities ensure that their agencies comply with the plans developed under the law.

4. Let the Governor appoint his own chairperson for the Council instead of having the chair rotate quarterly among the heads of the state disability agencies.

Pataki claims that he's trying to "protect" the state from being forced to spend a lot of extra money while still providing an "opportunity" for people with disabilities to live in less restrictive settings. Since there is overwhelming hard evidence that the least restrictive settings are also the least expensive ones, this claim makes no sense at all. Given that Pataki is beholden to nursing home operators for his campaign financing, it's much more likely that he's trying to protect them.

New York is facing a record budget deficit. The total, including shortfalls in revenue in the current year and projections for Fiscal Year (FY) 2003-04, is about $11.5 billion. This is a national issue; due to the recession, every state government has massive deficits this year. New York has one of the largest, though, because we are very dependent on the weak stock market centered in New York City, and because of the Pataki Administration's multi-year tax cuts.

Governor Pataki's FY 03-04 budget proposal continues his counterproductive efforts to cut the most inexpensive and integrated supports and services for people with disabilities, and in some cases to directly increase funding for the most expensive and segregated programs, thereby ensuring massive increases in long-term care spending in future years. He continues to miss the point that not only is the state's institutional bias harmful to people with disabilities, it also wastes billions of dollars. And, while Pataki says he doesn't want to raise taxes, his budget transfers hundreds of millions of dollars of state costs to counties and school districts, forcing them to raise taxes instead.

This article summarizes the biggest issues for people with disabilities in the proposed budget; we don't have room for every item. It's not all about cuts, either; there is some good news here too. And we don't think all the proposed cuts are bad. In this nasty economic climate, cuts are going to happen, and they have to happen. Some programs should be closed to enhance the quality of life and civil rights of people with disabilities; the recession may actually be of benefit in this area. Nor are we just grousing without proposing alternatives. Elsewhere in this issue we describe several ideas that can save the state billions of long-term care dollars (see the DBPCoalition Disability Agenda 2003-04).

Items That May Affect People with All Disabilities

SSI

Supplemental Security Income (SSI) is a federal-state program that provides cash for living expenses to many low-income people with disabilities. For most New Yorkers with congenital disabilities, who are unemployed, it is the primary source of income. The current monthly payment for an individual living alone is $639. Such recipients may also get food stamps and housing subsidies and are likely to receive Medicaid--but may have to make co-payments for medications. The feds increased their share of SSI by $13 per month for the upcoming fiscal year. Pataki wants to cut the state share by that amount, resulting in level funding for recipients and saving the state $25.7 million in FY 03-04.

Medicaid Drugs/Co-Pays

Pataki proposes numerous Medicaid cuts. Among those most likely to directly affect consumers are changes to Medicaid prescription drug plans. Pataki wants to create a new "Preferred Drug Program". For many classes of drugs, only one would be available without special authorization (but certain medications for people with mental illness are exempted from this plan, meaning the state will continue to pay for them.) Medicaid co-pays on generic prescriptions would be doubled from 50 cents to a dollar; co-pays on brand-name drugs would be increased by 50%, from $2 to $3. And people on Medicaid managed care would be required to pay prescription co-pays.

County Impact

Although Pataki claims that his budget will provide $330 million in "relief" for counties and New York City, the counties say otherwise. Most of this appears to come from his proposal that the state should pay 100% of Medicaid costs for prescription drugs, which has been the fastest-growing Medicaid expense for counties in recent years. The counties, however, point out that the budget will also increase the county share of Medicaid payments for hospital outpatient and clinic services from 25% to 37%, will increase the county share of funding for in-home services for elderly people from 25% to 30%, and will cut funding for Empire Development Zones and community colleges. All of this, according to the NYS Association of Counties, will add up to a net loss for counties, which will have to increase property taxes to make up the difference.

Medicaid Buy-In

The Governor's budget proposal says the Medicaid Buy-In will be funded, but DOH has announced that it won't roll out the program on time on April 1 because it hasn't "had enough time" to develop the needed procedures and systems. As of this writing, DOH wouldn't say when it would do so, except that it would be "later this year". DOH, which is controlled by Pataki political appointees with close ties to the nursing home lobby, has had 15 months, and $500,000 in federal money, to set up this program. Many people with disabilities are enraged that they must continue to wait to make a decent living while retaining essential personal assistance and other medical services. Sadly, the Buy-In law contains a loophole; April 1 is not a firm deadline. It appears that civil disobedience will be forthcoming.

Independent Living

Pataki proposes to cut state funding for Centers for Independent Living (CILs) like STIC by $1.2 million. This would repeat his usual attempt to rescind an increase granted by the state Legislature several years in a row. Since CILs assist people with disabilities to leave expensive institutional settings and live and work in the community, this is another cut that will cost the state more than it will save.

Homecare

Homecare is a general term for several Medicaid and Medicare programs that provide personal assistance services to people with disabilities, including STIC's Consumer Directed Personal Assistance (CDPA) program. It's a complex system, and the proposed cuts are complex too. Overall, Pataki wants to cut Medicaid homecare spending by $39 million in FY 03-04. Included here are: A .6 % "assessment" (tax) on homecare provider revenues. The 2.4% cost of living adjustment (COLA) granted in the current 02-03 budget would be rescinded, apparently retroactively, for some forms of homecare provided by certain types of agencies. A new utilization review system would be created that may impose a cap on administrative costs charged by homecare providers. Counties that operate their own homecare agencies would no longer get partial state reimbursement for costs in excess of standard state rates. And the homecare cost-cutting targets imposed on New York City and Westchester, Ulster, and Nassau counties would be continued.

On average, New York State spends $78,110 annually to keep a person in a nursing home, as opposed to $13,754 for all supports, including homecare, to assist a nursing-home-eligible person to live in the community. Cutting homecare funding simply increases the likelihood that people who could use the service will end up in nursing homes instead. The overall result will be more Medicaid long-term-care spending in future years, not less..

Nursing Homes

Pataki expects to save $157.6 million in Medicaid funding for nursing homes by changing reimbursement formulas and canceling the 2.4% COLA.

Medicaid/Medicare Cost Sharing

Currently, if a person is eligible for both Medicaid and Medicare, Medicaid will pay Medicare co-payments. Pataki wants to put an end to this. This could have especially strong impact on people who receive psychiatric services under Medicare, for which the co-payment is 50%.

Child Health Plus/Family Health Plus

Pataki wants to lower the income thresholds for these programs, and shift about 200,000 children out of the comprehensive Child Health Plus "A" program to the limited "B" program. These programs serve some children whose disabilities do not qualify them for Medicaid waivers, including those with chronic diseases, who may need homecare services or expensive drugs. Governor Pataki has taken a lot of pride in these programs, and obtained much publicity for them. Advocates are concerned that his willingness to cut these programs suggests a dangerous change in his attitude toward the importance of health care services for people with disabilities.

OMRDD

NYS CARES

The multi-year plan to address OMRDD's waiting list for residential services would continue in FY 03-04 with 1,226 new "beds". Virtually all of them will be in the kinds of group homes that STIC has been reporting as unsafe and dehumanizing. The state's average total cost to support somebody in an OMRDD group home is $134,140 a year; the average total cost to support the same person in an integrated residential setting is about $65,000 annually. The excess operating cost for these new beds alone will be almost $85 million a year, and that doesn't include the huge capital cost of building them. So while this budget proposal nickels-and-dimes unemployed, low-income people with disabilities by hiking co-pays, canceling the SSI COLA, and cutting independent living and supported employment services, the state will waste hundreds of millions of dollars on a low-quality, outmoded segregated residential service model that people who are able to make informed choices don't even want.

Other

Fees for some OMRDD community-based support services will receive a 3.4% COLA, including service coordination (which has not seen a raise in at least 5 years) and Medicaid-waiver-funded supported employment. The service coordination raise is a good thing. However, our experience with OMRDD's new waiver-based supported work system has upheld our predictions for this "reform". That is, all of the "extra" money that was gained by converting supported work to Medicaid has been eaten up by vastly increased paperwork and administrative costs. And, 25% of that "extra" money was simply transferred from the state budget to county budgets, so counties have been forced to raise local taxes as a result. New York taxpayers would be better off with a return to 100% state-funded supported employment. And they'd be better off still if all supported employment services were consolidated and administered by one agency--VESID (see the DBPC position paper on supported employment consolidation).

OMRDD's Institute for Basic Research and its Youth Opportunity Program will be closed. STIC regards these as low-priority programs and supports their closure.

There is also a hiring freeze at OMRDD; only vacant positions affecting health or security will be filled.

DOH Early Intervention

The Early Intervention (EI) program serves children with disabilities aged 0 to 3, providing service coordination, diagnostic and medical treatment, and assistive technology. It's a critical program that can reduce the severity of developmental disabilities and, thereby, future support costs as these kids grow up. Pataki's proposals will deny these services to many children, and exemplify penny-wise, pound-foolish thinking. He wants to require medical insurance companies to pay the first $5,000 of EI costs for covered children without affecting lifetime coverage caps or service limits. This may boost insurance premiums for the relatively few families that have this kind of insurance coverage. Counties would be allowed to negotiate EI service rates lower than those set by the state. Since provider agencies can't afford to provide services to governments that won't pay the full cost, this will either reduce service availability or simply be impossible to implement. Worst of all, families with incomes greater than 160% of the federal poverty level would be required to pay 20% of the cost of EI services. This could easily amount to thousands of dollars a year, something which families at this income level can't afford. The result will be that their children will receive fewer, or no, EI services--and, therefore, the state will have to spend much more money on these kids in future years.

OMH

In the wake of the adult "home" and nursing-home psych ward scandals, Pataki has been forced to do something about mental health services in the state.

He proposes to resurrect the "Reinvestment Act", a mid-1990s law that closed psychiatric hospitals and "reinvested" the money in community-based supports. Pataki wants to close five hospitals over three years. There won't be any immediate benefits for the inmates; they'll just be transferred to other hospitals, as will the staff who work with them. However, closing any big institution is a net gain for disability rights. In FY 03-04, the money saved will fund the salary COLAs enacted for mental health workers last December. In future years, they will be used for "supported housing" of some sort for people with mental disabilities.

Pataki is also proposing $65 million in capital funds to construct 1,000 "beds" for people with mental disabilities in 03-04, and another 1,000 to be constructed in a more indeterminate future. It's unclear what sorts of facilities these will be. Some sources say they may include some individual supported apartments; others imply that they will all be group homes.

The basic idea--more housing supports for people with mental disabilities--is good, but we see problems with the details. 10% of these "beds" will be for children. We don't think separating children with disabilities from their families is a good idea except in rare cases. Instead, support services for the families should be beefed up, and this would be cheaper than building group homes. If moving a child out is really the best option, then the child should be integrated, with appropriate supports, into a residence for nondisabled kids who can't live with their parents. Since most of the people currently being neglected and abused in adult "homes" are in New York City and its suburbs, a region with a severe housing shortage, we strongly support construction of new individual housing for them. However, any new apartment houses should be integrated-people with and without disabilities should live in them. We don't support construction of new group homes under any circumstances. There are between 12,000 and 15,000 people with mental disabilities living in horrendous conditions in adult "homes", and it's not clear how many of these new "beds" will be reserved for them, as opposed to newly-diagnosed people or people released from psychiatric centers, general hospitals, or the illegal nursing home psych wards. This proposal is a drop in the bucket, compared to the overall need. More adult "home" inmates may die due to neglect or maltreatment in the next year than will benefit from this proposal.

That may be the case even though Pataki also wants $8 million in new state funds (with some matching federal and county Medicaid money) for more services to adult "home" residents, including assessments and medication management provided by DOH, and service coordination, advocacy, and activity programs provided by OMH. The proposed increase, even if fully matched by Medicaid, amounts to no more than $3.65 per person per day. That won't buy a lot of services, and it won't significantly improve the lives of people in adult "homes".

VESID

VESID (Vocational and Educational Services for Individuals with Disabilities) is the primary vocational rehabilitation agency for New Yorkers with disabilities. Pataki wants to pull VESID out of the State Education Department, and the Commission for the Blind and Visually Handicapped (CBVH, the voc rehab agency for people with visual disabilities) out of the Department of Children and Family Services, and put them both in the Department of Labor (DOL). Although this would seem to make sense, DOL is mostly a support agency for employers, not workers; it has no understanding of or expertise in ongoing job support services for people with disabilities. This is being billed as a cost-saving "consolidation" of services. In fact, there is no evidence that these two agencies would be merged (which would be a good thing); they would simply be moved. CBVH would be free to continue its heavy reliance on sheltered workshops and its wasteful "sweetheart" assistive technology purchasing deals. Large vocational programs would still remain in OMRDD and OMH, and the problems caused by turf battles, poor communication, and conflicting definitions and regulations between all of these agencies would continue. A true consolidation of all supported employment services, under VESID, within the State Education Department, would be a much better idea. (See the DBPC position paper on supported employment consolidation).

Pataki's budget will cut the $2 million increase for VESID case services that the Legislature has provided for the past few years. VESID "intensive" (job placement and training) and "extended" (ongoing support) supported work funding would be held level, but Pataki wants $5.5 million for around 1,700 people already receiving extended services from OMRDD, but whom OMRDD has deemed ineligible. OMRDD has dumped these people as it gradually moves away from serving people without significant intellectual disabilities (perhaps because they tend to be strong advocates for civil rights and real self determination, and against paternalism, overprotection, and group homes). OMRDD's tighter eligibility rules will continue to push more people into VESID extended services who would not have used them before, and VESID estimates that 650 people, costing $1.63 million that haven't been budgeted, will be in that group in 03-04.

Education

Education is slated to take a big hit in 03-04. Much of it will come out of aid to local school districts, and will affect students with disabilities.

Several items appear to transfer federal Individuals with Disabilities Education Act (IDEA) money from direct services to administrative costs, leaving school districts to make up the difference. Since the services are required by law, they can't be cut. Solution: School taxes will be raised.

"Private excess cost aid" is state money used to pay private schools to provide services to children with disabilities that their local public schools don't offer. Now, we believe that public schools should be offering these services so kids don't have to be sent to more-expensive private schools. But the State Education Department and our elected officials would rather do just about anything than actually get tough with local school districts about educating children with disabilities, so they've made this money available. Pataki wants to cut it by 43.8%--about $70 million. In a perfect world, this would force school districts to find ways to provide the services themselves rather than send kids to private schools. In the real world, the districts will just raise your school taxes and continue to do--or, more accurately, not do--business as usual.

Meanwhile, the state School for the Blind in Batavia will get level funding. This school is a travesty and should be closed.

Possibly the worst education proposal is the elimination of support for universal pre-school. Federal law requires that children with developmental disabilities aged 3-5 have pre-school available to them. All schooling for children with disabilities should be integrated, and the only really effective way to do that is to have large numbers of nondisabled children in pre-school also. So this proposal will largely put an end to integrated pre-school for kids with disabilities. This is likely to have an adverse impact on the employment status of welfare recipients too, since many may have to quit working to stay with their children.

Conclusion

Predictably, nobody is happy with the Governor's proposed budget. More interestingly, however, prominent Republican state Senators, including Senate Majority Leader Bruno, are not happy with it. Bruno was quoted as saying the final budget agreement will be "very different" from what Pataki has proposed. We can look forward to a very long and contentious spring and summer; nobody is predicting a budget before September.

Southern Tier Deaf Club
Bowling Tournament
March 21 - 23, 2003

Deaf and Hearing People Welcome!

March 21, 2003
Welcome Bowlers and Fans
Open House
Holiday Inn Ballroom
7:00 pm to Midnight
Refreshments Provided
FREE Admission!!!!!!

March 22, 2003
Men's & Women's Team Events
Midway Lanes
11:00 am and 2:00 pm

Buffet Dinner
Welcome Bowlers and Fans
Holiday Inn Ballroom
6:00 pm to 8:00 pm

March 23, 2003
Single & Double Teams
Midway Lanes
9:00 am to ???