2000 is shaping up to be a watershed year, and that's not just because it's a new millennium (which some say it really isn't, but I won't get into that debate). This year is singular because Independent Living has finally begun to get serious attention for our ideas of integration, inclusion, and self-reliance from NY State government. It was also very nearly the year when the Americans with Disabilities Act (ADA), already weakened and teetering from repeated legal assaults, could finally have been destroyed by the Supreme Court. Both of these events are reasons why you as advocates need to be aware, vigilant and ready for action.
This year's Disability Action Agenda (see Disability Action Agenda 2000) has gotten quite a reception in the State Legislature. The Agenda was produced by the 35 Centers for Independent Living (CILs) in NY State. It sums up ideas from a December summit meeting in Albany, where nearly a hundred CIL representatives and consumers, and a few state agency officials and members of disability advocacy groups, debated and honed issues in the categories of Health and Long-Term Care, Education, Mental Health, and Employment.
At the top of everyone's list was getting NY to adopt the Medicaid Buy-In program in the Work Incentives Improvement Act (WIIA). This program would enable people with disabilities who work to keep Medicaid to pay for the equipment, prescriptions and attendant services that make it possible for them to work, and for which no other public or private medical insurance pays. Those above a certain income level would pay a premium for this coverage on a sliding scale. And, the Buy-In does not cost anything. Well, almost nothing. It doesn't increase Medicaid service costs, because all the people who would use it already get those services through Medicaid; without the Buy-In, they would still do so. The Buy-In just lets them earn a decent living, which puts them in a position to pay some of the costs of their coverage, as well as income taxes. It will cost something to run the program and collect premiums, but WIIA makes federal money available to the state to cover those costs for five years. After that, consumer premiums and income tax payments will more than offset them.
The no-cost factor is probably why there is serious interest in the Buy-In in the Senate Insurance Committee, and why Assemblyman Brennan is introducing a bill for its adoption.
Assembly Task Force on People with Disabilities Chair Scott Stringer is working on a bill to advance other Agenda issues. It would authorize and support the Department of Health in seeking a new Medicaid Home and Community Based Services waiver to get people out of nursing homes and into their own homes with attendant services. It would also require all state disability service agencies to develop and implement plans to comply with the ADA's requirement that states serve people with disabilities in the most integrated settings. That means getting everyone who wants to leave out of nursing homes, developmental centers, psychiatric centers and sheltered workshops, in an orderly, systematic way, with goals and timetables for completion, and it means transferring the money from those institutions to appropriate individualized integrated community supports.
So it's ironic that in this first year when that lofty, central goal of the Independent Living Movement is finally being taken seriously, the federal law that is making it possible came very close to being declared unconstitutional.
You may recall in our last issue we reported on lower court challenges to the ADA, and predicted that the Supreme Court would eventually review them. The Court was slated to take on one of those challenges in April, a direct attack on ADA's Title II, which includes the "most integrated setting" mandate. That crisis was staved off at the last minute (see Saved by the Ballot!), but probably only temporarily. For reasons of "states' rights", the Court may eventually decide Congress overstepped its bounds in ordering states to integrate disability services and stop discriminating due to disability in hiring. If it does, we may be left with an ADA that requires nothing of state or local governments, not even accessibility for buildings, sidewalks, or transit systems. Add that to other recent Supreme Court rulings, and we'll have an ADA that only outlaws job discrimination by private companies, only against people with the most severe disabilities who don't use prostheses or assistive technology (show me one), and that can only force real access improvements from the largest companies. No longer a civil rights law, ADA would be little more than a building code.
How do you like them apples? If you don't, then you need to go to work. We've been given a year's head start, and we've got three suggestions for what you can do to defend the ADA (see Protect the ADA!).
And even though things look positive in New York State this year, it's no time to rest. Your legislators will still need to hear from you that you support their efforts to enact our agenda. Write, call or email them with that message right away.
The laws you save may be your own.
People with disabilities want to work but 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. A lower-middle-class income won't pay for a $10,000 power wheelchair (which must be replaced every 3-5 years), $1,000/month in prescriptions, or $13,520/year for attendant services (based on 40 hours/week at $6.50/hour, the least one can expect to pay a minimally-qualified attendant in upstate NY). Even the best employer health insurance puts lifetime limits on coverage that people with severe disabilities would exhaust within a few years, and often doesn't pay for attendants at all.
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 far more restrictive than necessary to meet their needs. The recent Supreme Court LC v Olmstead decision and Department of Health and Human Services policy statements have made it clear that this is illegal discrimination. States must have a real, functioning plan to ensure that every person with a disability who desires it can receive necessary medical and support services in the most integrated living, working, and learning environments possible, with all deliberate speed. States that do not have such a plan are out of compliance and face a growing risk of potentially expensive and disruptive lawsuits.
After nearly ten years without a cost-of-living increase, NY's 1999-2000 budget provided an additional $1.5 million for Centers for Independent Living (CILs). We're thankful to those who supported this welcome development. However, that amount was only half of what CILs needed to recoup losses from ten years of inflation. In today's tight labor market, many CILs continue to lose valuable, experienced personnel to better-paid jobs. Employee health benefit costs continue to rise, and many CILs are still unable to restore staff training budgets or update aging computer technology.
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: