As pedestrians paced down the sidewalk passed New York State Gov. Andrew Cuomo’s office on Third Avenue in Manhattan, the day—August 29—seemed like any other. The sunny summer day was marked by a cloudless sky, employees with coffee or cell phone in hand racing to their destinations, and tourists excitedly absorbed by the city’s skyscrapers and attractions.
Amid the usual, however, were chants of “Our homes, not nursing homes,” as more than 25 demonstrators gathered at Governor Cuomo’s office to protest, calling on him to reverse New York State Department of Health budget cuts that will adversely affect the Consumer Directed Personal Assistance Program (CDPAP).
CDPAP—a Medicaid-funded program—allows people with chronic illnesses and physical disabilities to hire, train and supervise their own caregivers. Medicaid then pays these hired caregivers for their services through a fiscal intermediary (FI), an organization responsible for handling administrative costs of the program such as management of employee benefits, payroll and tax processing. A total of 600 FIs exist across New York State.
Governor Cuomo’s most recent budget, which took effect September 1, cut $75 million from the program. With cuts to CDPAP now in effect, FIs are now expected to receive less Medicaid funds to handle administrative costs which could force many to close down, in turn resulting in people with disabilities potentially losing their consumer-directed caregivers and quality of life services.
CDPAANYS sues State
Disability rights advocates and nonprofit organizations have estimated that cuts will significantly impact CDPAP—a program serving 70,000 people and employing more than 100,000 others. As advocates and supporters continue to protest, resulting in the birth of #SaveCDPA, the Consumer-Directed Personal Assistance Association of New York State (CDPAANYS)—which represents FIs—sued the State Department of Health. The New York State Association of Health Care Providers (HCP) and the New York Association on Independent Living (NYAIL) are also co-plaintiffs in the lawsuit, which alleges that the State Department of Health instituted a Medicaid reimbursement structure for FIs administrative costs that would bankrupt FIs. The current reimbursement system will result in some FIs losing roughly $2 million per year.
In requesting permission from the federal government to implement the system, DOH officials had to specify remedies they would implement if rates were insufficient to ensure for required access levels for consumers. Officials stated they are “not aware of any access issues; particularly since there is excess bed capacity for both hospitals and nursing homes.”
New York Honorable Judge Christina Ryba recently denied the organizations’ request for a preliminary injunction, on the premise that it could not be proven that FIs would close on September 1. She did, however, rule the lawsuit can proceed. Parties will return to court on September 13.
Protesting to stop CDPAP cuts
At the August 29 protest sponsored by Long Island ADAPT—a local chapter of ADAPT, a national grassroots organization that strives to assure civil and human rights of people with disabilities are upheld—many called on Governor Cuomo to reverse the CDPAP cuts. Protestors—including members of Long Island ADAPT, Independence Care System (ICS), Brooklyn Center for Independence of the Disabled (BCID), and Disabled in Action (DIA) of Metropolitan New York, among others—chanted slogans and sported signs with messages including “Our homes means our independence” and “CDPA gives me freedom.”
Long Island ADAPT Co-Facilitator Sophia Ardi, who has a disability and uses CDPAP, said that cuts to the program will have far-reaching consequences for people with chronic illnesses and disabilities and will put FIs out of business.
“When my aide doesn’t come to work, I don’t have a life that day,” she said. “I don’t want to move out of my house. I have 24/7 care. How dare anyone tell me I can’t live the life I want.”
ICS member and BCID employee Milagros Franco echoed those sentiments, noting that she has had her personal caregiver for three decades. “If they cut hours to save money, I may lose her,” she said. “That’s like taking away a part of my family.”
‘CDPAP is changing lives’
Though the State has said that cuts will not result in reduced hours or enrollment in the program, Long Island ADAPT volunteer Marie Hickey, who led the protest outside Governor Cuomo’s office, said the program should remain untouched.
“The DOH even said ‘Don’t worry, if people lose CDPA, there are plenty of beds in nursing homes and institutions for them,’” she said. “That’s totally against the law. This is unconstitutional. It’s a prison in a nursing home.”
ICS member and BCID employee Jessica Delarosa said that consumers, disability rights advocates and nonprofit organizations need to stand together to preserve life-sustaining services for people with disabilities.
“Don’t turn a blind eye to services you may have to utilize when you’re older,” she said. “CDPA is changing lives for so many.”