People with disabilities are currently facing several alarming budget and legislative proposals, including Governor Kathy Hochul’s proposed $125 million cuts to the Health Home program in the FY 2024-25 state budget and changes to Consumer Directed Personal Assistant Services (CDPAS) which would impact people with disabilities. Protecting our access to supports and services is essential.
A recent New York Post article, “How NY’s $6 billion CDPAP Medicaid program has been abused, overused for years,” is the perfect example—and reminder—of why people with disabilities must continue fighting and advocating for what we need. While the article addresses concerns about potential misuse and fraud with the Consumer Directed Personal Assistance Program (CDPAP), the editorial fails to recognize the broader context and the essential role that CDPAP plays in the lives of thousands of New Yorkers.
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. The program was created with the input of people with disabilities who could not receive services they need to live independently from home care agency aides, who are prohibited from providing certain types of care. Without CDPAS, people would need to receive these services either in a nursing home or from a nurse, with both options coming at a higher cost and restricting the autonomy of the consumer to direct their own care.
The New York Post article also highlights the increase in enrollment in CDPAP over the past years and emphasizes the potential for abuse, but neglects to acknowledge the critical shortage of home care workers in New York State, leaving thousands at risk. It’s easy to point fingers at the program, but it’s important to acknowledge the systemic issues that contribute to its challenges.
New York State currently faces the nation’s highest shortage of home care workers. Over 4.6 million New Yorkers will be over age 65 by 2035 — an increase of 29 percent in the next decade. These caregivers are often underpaid and work countless hours, yet provide vital support to individuals who need assistance to live independently. Without a wage increase, the home care worker shortage will hit 1.47 million workers by 2035.
The CDPAP program did not grow by accident. It filled a void simply because there is an absence of viable alternatives for individuals with disabilities or senior adults. The flexibility of the program has allowed many agencies to recruit family workers that otherwise took on caregiving responsibilities as unpaid work. In a population of aging New Yorkers, the numerous ads for CDPAP touting same day payment and getting paid for taking care of grandma made the program attractive and popular.
However, it is critical to note that for many New Yorkers, CDPAP is not a convenience; it’s a lifeline that allows them to remain in their homes and communities surrounded by loved ones.
Focusing on CDPAP enrollment figures without considering these important factors paints a distorted, incomplete portrait of the program’s overall impact and effectiveness. As someone with a spinal cord injury who uses CDPAP, the program, for me, isn’t simply a cost-saving measure—it’s the only option that allows me to maintain my independence and dignity while receiving necessary care in the comfort of my home.
Let’s not lose focus on CDPAP’s importance in providing essential care for an often overlooked and undervalued population. We have to ensure our voices are heard, and that the full story, the painting in its entirety, is on the canvas for all to see.
As co-leader of the Civics League for Disability Rights (CLDR), CDPAP is just one of a number of issues myself and my fellow members advocate for. We invite the community to join us and learn more about how we advocate for ourselves and the disability community, in order to stay engaged and informed on the issues that impact us.
Marcus Johnson is co-leader of the Civics League for Disability Rights (CLDR), an independent, volunteer-led group of New Yorkers with disabilities who advocate for themselves, their community and for change in the healthcare system for people with physical disabilities. To learn more, email civicsleague@gmail.com.
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.