“These are necessary services for our well-being that we need in order to live,” said Independence Care System (ICS) member Stephanie Wallace. “You get angry and concerned. I have a family that can help me, but some people don’t have that and these services are vital for our survival.”
Wallace spoke as part of a group of protestors gathered on November 21 at New York State Gov. Andrew Cuomo’s office in Manhattan. The group, most of whom were in wheelchairs, were there to demand that the state stop cooking the books on Medicaid spending and fully fund essential services for people with disabilities. The demonstration was organized by the Civics League for Disability Rights (CLDR), a group of New Yorkers with disabilities who advocate for themselves and their community while sharing ideas, tools and information about how to effect change.
People with disabilities in New York State continue to face a number of ongoing challenges that threaten their independence. A recent report from New York State Comptroller Thomas DiNapoli highlights the state’s Global Cap on Medicaid spending. DiNapoli pointed out that while actual Medicaid spending last fiscal year grew at more than twice the state’s projections, rather than admit that the Global Cap is a failure, the state instead deferred $1.7 billion in Medicaid payments by three business days – artificially pushing last year’s spending into this year’s budget.
Advocates say that the state is cutting essential services rather than assessing the cost of Medicaid for New York’s rapidly aging population and its nearly one million residents with disabilities.
According to the Civics League, over the past several years, the state has forced two essential Managed Long Term Care programs for people with disabilities to close in order to save money. Then, in September, the state cut $75 million from the Consumer Directed Personal Assistance Program (CDPAP), which many depend on to maintain their independence. Though a court order called for those cuts to be reinstated, the state will likely pursue an appeal.
“We don’t want our existence to be compromised because of budget cuts,” Stephanie said.
Protesting to stop cuts in services
At the November 21 demonstration, protestors—including members of CLDR, ICS, and Disabled in Action (DIA) of Metropolitan New York called on Governor Cuomo to stop threatening their independence by cutting crucial services. Protestors sported signs with phrases including “The Medicaid Cap is Killing Us!” and “Stop Cutting Our Services,” and filled the street with chants of “Our homes – not nursing homes!” and “The Medicaid Cap has got to go!”
ICS member Kelly Irish noted that many people with disabilities feel the state exhibits a lack of responsiveness and understanding of their needs.
“We work, we pay taxes and they’re cutting our services,” Kelly said. “It’s horrible, and I can’t help but cry on most days. We need these services to stay mentally and physically healthy.”
CLDR and ICS member Iffat Mahmud expressed concern over the Medicaid Cap and threats to CDPAP, noting that eliminating services will severely affect people with chronic illnesses and those with disabilities, and that CDPAP cuts will impede on the independence and freedom of choice for people to select and appropriately train and manage their caregivers.
“It shouldn’t be about dollars and cents,” Iffat said. “Governor Cuomo is impeding our independence. It’s about our well-being, and being able to do what we want, as we want.”
CLDR advocating for people with disabilities
CLDR President Sharifa Abu-Hamda said that members will continue to take action to preserve services for people with disabilities as the group strives to garner new CLDR members.
“The more members who join, the more we can achieve as a group,” Sharifa said. We need to advocate for our services—health services, homecare, wheelchair services, things we need on a daily basis. We’re a minority that should be acknowledged.”
Others, including CLDR and ICS member Keith Brennan, echoed those sentiments, noting that with a new budget process about to begin in the state, there is a growing fear that matters will only grow worse. This is why, Keith said, members of the disability community must unite to protest to have their voices heard.
“The Medicaid Cap is killing us, and our independence is important,” Keith said. “My home care aide is my partner. If cuts continue, either I sit and die or go to a nursing home. But I won’t last long.”