Five years ago, New York State tested out a hypothesis: placing people with disabilities receiving services from one managed long term care (MLTC) provider, Independence Care System (ICS), into a larger plan would reduce costs by finding “efficiencies.” I attended a meeting in September that confirmed what many in our community already knew about this hypothesis: some of our costs, like homecare, are fixed, and there is no legal, member-centered, ethical way to cut these costs without significantly affecting our health and safety. This five-year experiment with my life is now over and I implore New York State to do something different. The consequences are dire.
A 2024 study by Dr. Scott D. Landes from Syracuse University reviewed data from the National Health Interview Survey Linked Mortality Files. It confirmed that the risk of mortality is nearly twice as high for disabled adults as for non-disabled adults, with the likelihood of death increasing with each additional disability type the person experienced.
New York State has been slowly eroding our ability to live in the community. A few months ago, I was on a call with a legislative staffer who pointed out that in every budget cycle over the past nine years, there have been cuts to funding for services for people with disabilities. It has become harder to get MLTC services, with New York State now requiring that, in order for a person to receive help, they must need assistance with three conditions instead of two. It is harder than ever to get 12-24 hours of care (and it was never easy) as individuals with high homecare needs are sent to a second review panel before being approved for services. It has also become more difficult to stay in the Health Home program, as New York State applied a new assessment to try to shrink the number of people in the program. NYS has proposed a single fiscal intermediary to administer the Consumer Directed Personal Assistance Services (CDPAS) program, a program designed for and with people with physical disabilities to allow aides to perform life-sustaining services in the community. If I were a different, less optimistic person, I would guess that New York State wants me to live in a nursing home— or wants me dead.
Luckily, we have tools to fight the trends. The first and most relevant right now is voting. If you need assistance registering to vote, visit nycvotes.org for more information.
I know many of you are cynical about voting. Think of it as a way to give your elected officials a report card. For our community, where so many of our basic rights are driven by government policy, voting is essential. It allows us to elect officials who understand the lived experience of disability, and maybe even vote people with disabilities themselves into office. For instance, there is no doubt that U.S. Senator Tammy Duckworth, who has a physical disability, thinks about accessibility, the Americans with Disabilities Act, and home care differently than her non-disabled peers.
Voting is a numbers game. In a time when elections are often decided by razor-thin margins, no matter which way you vote, your vote matters.
Another way to make a difference is by getting involved! As the co-leader of the Civics League for Disability Rights (CLDR), I encourage more people to join our fight for better healthcare for people with physical disabilities. Getting active in policy and politics is imperative for our community; our lives literally depend on it. On October 8th from 2:00-4:00pm, the CLDR will have a meeting focused on member action. Our goal: to make sure every member knows who their elected officials are, who the chairs of the committees most crucial to our health are, and how CLDR members can contact them. We are also working with ICS to convene a qualitative study, which will include several focus groups with consumers and advocates, to document the challenges of the current health care and long-term care systems in New York State. We will document the outcomes to advocate for a statewide plan for people with physical disabilities.
Are you scared, frustrated, and angry about the state of health care and long-term care in New York State? Me too. But together, we have power! Get out and vote on November 5th. And join us for the CLDR meeting on the second Tuesday of each month from 2:00-4:00pm. Reach out to me at civicsleague@gmail.com for more information.
Opinions expressed are solely those of the writer(s) and do not necessarily reflect the opinions of Able News at The Viscardi Center and/or The Viscardi Center.