In New York State, 4 out of 9 disabled people are insured by Medicaid. It is typically the only insurance that covers home and community based services that keep our people out of institutions. Yet, these services are far from perfect, and even though it has been over 20 years since Olmstead, we are still fighting for our right to live in the community with access and dignity.
Please see our 2025 white pager for a detailed list of our issues:
Supporting Home and Community Based Services
Under Medicaid, disabled people can enroll in Personal Care Services (PCS) through an agency, or Consumer-Directed Personal Assistance (CDPA), where they are able to hire their own PCAs (Personal Care Assistants) and direct their own care. New York State and the DOH has not only been making severe budget cuts to these programs, but also continually try to change regulations and eligibility criteria to make it harder to secure care.
The Risk of Institutionalization
It has been over 20 years since Olmstead, but we are still fighting for our right to live in the community and not locked away in a nursing home. Currently across the U.S., 1.4 million Americans live in nursing homes with no access to otherwise accessible housing, home care, or mental health care services.
ADAPT’s slogan has always been to #FreeOurPeople — and we have been around for 40 years because it still speaks to a need.
Olmstead was a ruling in 1999 that stated unjust segregation of disabled people in institutions is discrimination and in direct violation of the ADA. It mandates that public entities must provide community-based services to disabled people when they are appropriate, when the consumers want such services, and when it can be reasonably accommodated. Twenty years later, and we are still fighting.
What are our activism strategies?
Our working group takes a multi-pronged approach to advocacy. We have meetings with our State Senators, Assemblymembers, and liaisons at the Governor’s office. We engage in letter-writing campaigns, social media advocacy, and coalition building. When all else fails, we organize protests!
Image description: Protestors with signs that read “Restricting home care eligibility is an act of violence,” and “Home care restrictions kill people like me. How can you ignore us and still sleep at night?”, and “Restricting access to home care saves nothing! Nursing home care is more expensive, and disabled people lose their jobs!”
Interested in what you see here?
To join our Save CDPA and Medicaid working group, fill out our membership form or shoot us an e-mail. Have any ideas on what the Downstate NY chapter of ADAPT could be doing in our fight for Medicaid reform? We would love to hear from you.
Downstate New York ADAPT 