New York's 37 Centers for Independent Living
DISABILITY ACTION AGENDA 2001
ADOPT A SOUND AND EFFECTIVE MEDICAID BUY-IN PROGRAM
The Buy-In is a Medicaid option made available to the states by the federal Work Incentives Improvement Act of 1999. It enables people with disabilities who want to work to "buy in" to Medicaid on a sliding scale when their income exceeds Medicaid eligibility limits.
Numerous Legislative leaders, including Assembly Speaker Silver and Assemblyman Stringer, and Senators Libous, Meier, Seward, Hannon, Larkin and Marchi, have sponsored legislation to implement this program. More recently, Senate Majority Leader Bruno voiced support for the concept and Governor Pataki's 2001 State of the State message proposed such a program. New Yorkers with disabilities are pleased and excited by this support. However, the details must be worked out in order to enact a program that achieves the goal of putting tens of thousands of people with disabilities to work in good jobs.
What is an effective Medicaid Buy-In?
The Buy-In must be immediately available to all eligible people with disabilities who go to work and earn up to 400% of the federal poverty level and retain up to $40,000 in personal assets. It must provide coverage for all items now covered by NYS Medicaid that are not covered by the participant's employer-provided health insurance, if any. It must not be "phased in" over a period of years or limited to a "demonstration project". It must take effect no later than April 1, 2001.
Why is this so important?
Description of chart--`Medicaid Buy-In'
People with disabilities can't take well-paid jobs without losing Medicaid coverage. Medicaid is the only medical insurance, public or private, that provides unlimited, lifelong coverage for medical equipment and supplies, prescription drugs, and personal attendants. It is not unusual for the costs of these items to reach or exceed $28,000 per year for a person with significant disabilities. The best private health insurance puts lifetime limits on coverage that people with disabilities would exhaust within a few years, and doesn't pay for attendants at all.
Won't this increase NY's Medicaid costs?
The Medicaid Buy-In can actually pay for itself, when all costs are considered:
* New York already pays Medicaid costs for hundreds of thousands of people with disabilities who aren't working or don't earn enough to affect their Medicaid eligibility. Data from other states that have implemented a buy-in indicate that no more than 10%, and as little as 2%, of buy-in participants are people who are not already receiving Medicaid.
* Many participants will reduce their use of Medicaid funds because their employer-provided health insurance will cover some costs previously paid by Medicaid.
* The program is a buy-in, not a "give-away". Participants whose incomes exceed the standard Medicaid threshold pay a premium for coverage, on a sliding scale up to 7.5% of their annual income.
* People with disabilities who earn up to 400% of the federal poverty level while keeping Medicaid will pay income taxes and use fewer public benefits. The US Census Bureau estimates that there are about 1.24 million working-age New Yorkers with disabilities. 70%, or 868,000, of them are jobless, according to the Harris Poll. If each one earns the average annual salary for people with disabilities in integrated jobs cited by NY State's Annual Status Report on Integrated Employment--$289/week--they'll pay annual NYS income taxes of over $286 million on total annual income of over $13 billion, pay up to $975 million in premiums, and reduce government benefits costs by $1.6 billion. This will make some $2.4 billion available annually to pay for the Buy-In (see chart).
* The Work Incentives Improvement Act makes available additional Medicaid funds that states can use over five years to cushion the initial costs of offering the Buy-In.
CREATE A MOST-INTEGRATED-SETTING PLAN
* Pass legislation to require all state disability service agencies to develop coordinated plans and timetables to comply with the Americans with Disabilities Act (ADA) requirement that people with disabilities be served in the most integrated setting appropriate to their needs.
More than ten years after passage of the ADA, New York State still has thousands of people with disabilities in institutions, nursing homes, sheltered workshops, and segregated school programs that are more restrictive than necessary to meet their needs. The Supreme Court's 1999 Olmstead decision found that the ADA requires states to serve people with disabilities in the most integrated setting. Thereafter, the US Department of Health and Human Services sent a memorandum to all state Medicaid Directors addressing how states can comply with the Olmstead decision and suggesting development of a state Olmstead Compliance Plan with input from people with disabilities and advocates. New York has not developed such a plan. As a result, the state faces a growing risk of potentially expensive and disruptive lawsuits.
Every state department/agency that operates, funds or regulates residential institutions and/or segregated congregate programs, including but not limited to: Department of Health, Office of Mental Health, Office of Mental Retardation and Developmental Disabilities, State Education Department, should be required to move people into the most integrated setting. A minimum of 1% per department/agency should be transferred from excessively segregated settings to more appropriate integrated services in FY 2001-2002.
The plan must be comprehensive and include:
1. Mandated reforms of state agency information systems to track consumer requests to move from restrictive state-operated or -funded programs to more integrated settings
2. Effective methods to directly inform every eligible individual, including those now in voluntary-operated facilities, of their right to a more integrated setting and the availability of services
3. Removal of all legal, regulatory, or administrative requirements that segregated settings be "backfilled" before people can leave them for more integrated settings
4. Removal of fiscal incentives that provide more funds to support segregated programs than to serve people with the same needs in integrated settings (e.g. the SSI "Congregate Care Level II" rate)
5. Long-range planning for the inevitable downsizing and closure of segregated facilities, including plans to support and compensate voluntary providers who make good-faith efforts to reduce their use of congregate settings
6. Sufficient oversight of local or regional jurisdictions, and where necessary, funding differentials, to ensure that movement to more integrated settings occurs with equal speed and in numbers equally proportionate to population density in every locality in the state
There is no acceptable rationale for keeping people in segregated settings. Public policy should support the fullest possible independence, inclusion, and participation in the community for adults and children with disabilities and elderly persons. Such a policy will cut government spending because integrated community-based supports are, on average, less expensive than restrictive, segregated programs. It will increase government revenue because people who live in their own homes with the support they need to travel in their communities are more likely to get jobs, pay taxes and contribute to the economy. It is the right thing to do. And it is the law!
CUT LONG-TERM CARE COSTS THROUGH
COMMUNITY-BASED SERVICES
Description of chart--Options for Living Supports
* Provide $1.59 million to Centers for Independent Living (CILs) to assist people to leave nursing homes and other institutions and move into their own homes and communities.
On average, CILs expend about 10 staff hours per week to assist a person to leave excessively restrictive settings and/or remain in the most integrated setting. For about $43,000--less than the cost of one year in a nursing home for one person--each CIL could create a new full-time Community Re-integration position and move 4 people back into the community annually, or 148 people statewide. With each such person served saving the state, on average, $46,000 each year, $6.8 million could be saved in expenditures on restrictive programs. Deducting CIL costs produces $5.2 million in net savings for disability services in New York State each year. These funds must be provided in addition to the cumulative cost-of-living increases requested by CILs.
* Pass legislation to mandate the Department of Health to seek and implement a Medicaid waiver to support people with any disability of any age who wish to leave congregate-care facilities and live like anyone else in the community.
This waiver must include funding for:
* Housing
* Assistive technology
* Personal assistance and/or safety monitoring at home or in any work or community setting
It should also fund other services to facilitate transition into the most integrated setting and maintenance of community living, including but not limited to "startup costs" to set up a household. It should permit variable levels of consumer responsibility for arrangement and oversight of services based on consumer preference. Waiver services must have state-wide uniformity. Development of the waiver must involve input from people with disabilities and advocates.
On average, homecare costs New York State 1/3 of annual institutional costs for persons with similar needs. The federal 2000-01 budget contains new funds to support state efforts to reduce use of segregated services for people with disabilities, and our State should take advantage of these opportunities. $50 million in systems-change grants are available from HCFA for states to eliminate institutional bias in their Medicaid programs, with no state-funds match required. An additional $20 million are available from HCFA for state projects to transition people out of nursing homes. This is another chance for the Department of Health to obtain funding for a waiver planning process similar to one DOH proposed two years ago, and which was rejected because the federal Department of Health and Human Services gave priority consideration to less wealthy states.
INCREASE JOB PLACEMENT FOR PEOPLE WITH DISABILITIES
* Provide $8 million in additional funding for VESID supported employment services in 2001-02.
This proposal would put an additional 1,250 people with disabilities into integrated jobs at competitive wages in 2001-02, as the first step in a 3-year plan to place 5,000 people who have been identified as ready to leave sheltered workshops. Supported employment costs less than any other "day" or vocational program in New York, and provides a measurable return on investment in the form of increased income tax revenues and decreased benefits costs.
EDUCATE STUDENTS WITH DISABILITIES FOR PRODUCTIVE LIVES
* Provide $2,775,000 to enable each of New York's 37 Centers for Independent Living (CILs) to implement School-to-Work Transition Services.
* Provide funding and authorization to enable students with disabilities aged 16 and older to receive supported employment and placement services for after-school and summer jobs.
CILs have proven their ability to: 1) get more high school graduates with disabilities into integrated homes and jobs; 2) cut the drop-out rate of students with disabilities by up to 50%; 3) reduce juvenile crime. Three CILs are in Year 3 of a VESID-funded pilot project to demonstrate Independent Living approaches to transition services. These projects have already achieved the above outcomes. Solid data indicate that the majority of youthful criminals have learning and/or emotional disabilities, and successful transition from school to work and integrated living substantially decreases the crime rate. Each CIL can operate such a transition program for $75,000 per year. This amount must be provided in addition to the cost-of-living increases requested by CILs.
REPEAL KENDRA'S LAW
* Repeal Kendra's Law (Mental Hygiene Law, Section 9.60) establishing Assisted Outpatient Treatment (AOT).
Recently, New York State enacted a law that enables court-ordered assisted outpatient treatment (AOT) for people who, due to their treatment history and present circumstances, are "unlikely to survive safely in the community" without supervision. This law is a knee-jerk reaction to the horrific death of Kendra Webdale. These incidents are random acts of violence that will not be eliminated by this law. They have been distorted to promulgate the misconception that people diagnosed with mental illness are threats to society. Most of the people involved in these incidents weren't resisting treatment; rather, they had repeatedly sought treatment and were denied it.
AOT, a form of preventive detention applied only to people with mental health disabilities, grossly violates the civil rights of citizens. Involuntary outpatient commitment has not been shown to improve people's mental health. Controlled clinical trials, including the Bellevue Involuntary Outpatient Commitment Pilot Study conducted by Policy Research Associates right here in New York, that compare people who have been forced into outpatient treatment to people with similar diagnoses who received similar treatment on a voluntary basis, show that AOT does not work better than voluntary treatment. A national study published recently in the National Institute for Mental Health's Schizophrenia Bulletin found that fewer than half of the patients treated for schizophrenia are receiving proper doses of antipsychotic medications or appropriate psychosocial interventions. The study showed that psychosocial treatments are often prescribed at the point of hospital discharge but follow-through in the community is low. It's the treatment that works, not the force.
Our state must accept responsibility for guaranteeing the availability of effective voluntary treatment, instead of blaming the people who can't get that treatment. New York must increase investment in recovery-oriented community-based mental health services that preserve the dignity of the individual. Research like the Bellevue study shows that self-help works. What makes a difference is greater scope, flexibility, responsiveness and coordination of community-based psychiatric treatment and psychosocial services. Such services exist in consumer-run programs across the state; we need only expand them to achieve the goals that Kendra's Law envisions but pursues through oppression and force.
ENHANCE AND CLARIFY THE AMERICANS WITH DISABILITIES ACT
* Pass legislation requiring that all state and local government programs be accessible to people with disabilities.
While New York State's Human Rights Law extends many of the same protections to people with disabilities as the ADA, some specific ADA requirements are only implied by New York law. This causes needless confusion for state agencies and operators of public accommodations. Putting the ADA's requirements for governments into state statute will strengthen the law and help to lessen confusion.
* Pass additional legislation requiring that public accommodations also be accessible.
Another law incorporating ADA public accommodations requirements will ensure continuity of regulations for business owners and make compliance easier. In 1997, our state became a national leader by passing the Reasonable Accommodations Act, which reiterated ADA employment rules as state law. It is again time for NY to blaze a trail, building on resolutions supporting the ADA passed by both houses of the Legislature, and add other facets of ADA to state law.
CONTINUE WORKING TO PROPERLY FUND INDEPENDENT LIVING
*Provide $500,000 in remaining cumulative cost-of-living increases owed to CILs through FY 1999-2000.
* Provide a 2.7% COLA, or $285,000, (based on the federal 1999 CPI) to recoup last year's losses to inflation.
* Provide $570,286 to bring NY's 3 newest CILs (Harlem, Cortland, and Center for Disability Rights in Rochester) up to the current minimum base level for state CIL funding, and incorporate Cortland and CDR into NYS Independent Living law.
* Include CILs on the permanent list of programs that receive annual COLAs.
After nearly ten years without a cost-of-living increase, NY's last two state budgets provided an additional $2.5 million for Centers for Independent Living (CILs). We're thankful to those who supported this welcome development. However, that amount still falls short of the $3 million total that CILs need to recoup losses from ten years of inflation, and it does not take into account ongoing increases in operating costs. In today's tight labor market, many CILs are losing valuable, experienced personnel to better-paid jobs at a growing rate. Employee health benefit costs continue to rise, and many CILs are still unable to restore staff training budgets.
CILs assist people with disabilities to leave segregated or restrictive programs and live safely, productively, and independently in the most integrated settings possible. In doing so, they provide major savings to New York taxpayers. The average annual savings when CILs help people move from excessively restrictive settings to the most integrated environments--taking into account all public costs for supports provided in both segregated and integrated settings--is about $46,000 per person. Yet CILs still only have the capacity to serve about 4% of those who could benefit. Here are some recent examples:
* A CIL advocated in court for a woman who was facing commitment to a state hospital. She was released and returned to living independently in her own apartment with ongoing peer support services, at a cost of $500.
Annual Savings: $137,000
* A CIL provided information and advocacy services to a family whose child was facing discharge from a Home and Community Based Waiver. Without waiver support, the child would be placed in an in-patient psychiatric unit. The parents successfully appealed the discharge. Assuming average annual Medicaid Waiver costs of about $40,000, plus CIL costs of $1,000:
Annual Savings: $96,500
* Due to inefficiencies in local service systems and her own limited self-advocacy skills, a woman who left a nursing home was experiencing difficulties in obtaining suitable personal assistance and physical therapy services. She was in danger of being returned to the nursing home. CIL advocates provided ongoing advocacy and skills training, and helped her win a Fair Hearing and remain in her home with appropriate supports for a total cost to the CIL of $7,000. Assuming average annual homecare costs of $16,000:
Annual Savings: $23,000
Description of chart--`Total Requested CIL Increases'
CILs are free-standing, locally-controlled, non-residential non-profit agencies that are governed and operated by people with disabilities. They assist people with all disabilities of all ages to be as independent as possible. They also help families, businesses, agencies, and governments to better meet the needs of people with disabilities. Centers provide a broad range of services, such as architectural barrier, assistive technology, and housing assistance, benefits advisement, life skills training, peer counseling, advocacy and information/referral. Some Centers also provide sign language interpreters, supported employment, service coordination, personal assistants and more, depending on the needs of their communities.
