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The Uncertain Future of a New York Disability Program

HOST, CLAIRE DAVENPORT: The Consumer Directed Personal Assistance Program, or CDPAP, has provided almost half a million New Yorkers with severe disabilities medical assistance for daily activities. But now, after recent incidents of fraud abuse, it’s on the chopping block. It’s part of the state budget that lawmakers are negotiating. For people who rely on CDPAP like mother and daughter Mary and Anastasia Somoza, this change could upend their lives.

BYLINE, CLAIRE DAVENPORT: We're here right now with Mary Samoza. Mary, welcome to the show. and we're here to talk about the New York State budget and, some potential cuts to the Medicaid program. Are you able to tell me a bit about, what the Consumer Directed Personal Assistance Program is?

MARY SAMOZA: What we call and is commonly known as CDPAP is a Consumer Directed Personal Assistance Program. It was initiated about 40 years ago by younger people with disabilities living independently in the community who did not want to have traditional home care.

I am, for example, the parent of identical twins and they're 40 years old, they both have cerebral palsy. They both are wheelchair users. They both are quadriplegic. And yet they have very, very different needs. My daughter, Alba, for example, has a feeding tube, and she is nonverbal and yet she uses technology to communicate. Then Anastasia, for example, who is verbal, graduated from Georgetown University with a degree in political science with London School of Economics.

The original goal was for people who have significant physical disabilities and that need assistance with activities of daily living, meaning getting out of bed, preparing food, having a shower, going to the bathroom, all of those individual needs. That's what CDPAP was all about.


And it was phenomenal because for years, all across the state, at least one parent had to give up their job to stay home. I was a round-the-clock caretaker, an unpaid caretaker, even when they passed 21 and so on. And when I tried to get a job, when finally Anastasia, for example, went to university, nobody would hire me.

But as with all good things, it was abused, not by the families, but by agencies. They were unregulated. And all sorts of forms of abuse and they were luring people out seniors out of traditional home care to get CDPAP. So these pop-up agencies could provide the services. So, obviously, it became a nightmare.

So the government gets to a point where it completely got out of control. And so the governor decides we've got to do huge cuts to home care. And typical of government, they sometimes throw the baby out with the bathwater.

CLAIRE DAVENPORT: Tell me a little bit about where your hopes lie right now. This is Anastasia Somoza, um, daughter of Mary, also an advocate.

ANASTASIA SOMOZA: People with disabilities receiving the Consumer Directed Personal Assistance Services truly believe that there is a way to reduce the cost of the program in its entirety.

So that we can maintain our independence and continuity of care, quality of care. And stay in our communities. And at the same time, there's also a way to, work with the state to achieve the necessary goal of bringing down the cost of the program and eliminating bad actors and eliminating the bad actors.

CLAIRE DAVENPORT: Once again, this was Mary and Anastasia Samoza joining us today.


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