A group of protestors, some in wheelchairs, holding signs that say "Save CDPA"

People with disabilities, advocates and seniors gathered in Albany February 11 to protest proposed changes to the Consumer Directed Personal Assistance Program.

Personal assistance needed

A NYS budget proposal threatens to cut funding for a program that has helped the elderly and people with disabilities
“It was also depressing because, ‘Is this my life?’ I can adjust to being mostly bed bound, but to be mostly bed bound and not feel safe in my own home was hard.”

NEW YORK—Michele Kaplan is afraid to go back to life without CDPA.

Her aides were strangers. Not all of them spoke English, so Kaplan couldn’t communicate her needs. Once she needed to bathe, but she didn’t feel comfortable with the weekday patient care assistant, one of several assigned to her by an agency. “I asked her to help me bathe while my friend was there,” Kaplan said. “She was so absurdly rough with me that the shower was painful and overwhelming on a sensory level. Even my friend who saw what was happening said ‘Why are you being so rough with her?’ I cried after it was over and refused to shower till I got CDPA again and felt safe again.”

The Consumer-Directed Personal Assistance Program (CDPAP), is a Medicaid-funded program that allows the elderly and people with disabilities to choose and manage the people who care for them. That means, said Kaplan, “getting individualized care with people you trust,” and with whom you feel safe.

Kaplan, who lives in New York City, describes herself as “a proud disabled human,” an artist, writer and an intersectional activist.

Her personal care assistants, whom she now chooses for herself, help her with meal prep, at doctor’s appointments, with cognitive exercises, light cleaning, getting dressed if needed, filling up the humidifier and getting around her home, either by foot or in the manual wheelchair Kaplan uses. Kaplan’s been through the gamut of caretaking services. After developing a second brain cyst, she had to spend time in a nursing home. She then transitioned to in-home caretaking not through CDPAP.

“My experience with traditional services was a bit a like a glorified upgrade from being in the nursing home,” Kaplan said. “It was also depressing because, ‘Is this my life?’ I can adjust to being mostly bed bound, but to be mostly bed bound and not feel safe in my own home was hard.”

Kaplan isn’t able to be at many protests, but she voiced her support for the many who gathered in Albany on February 11, Lobby Day. They were there protesting a move by Gov. Andrew Cuomo that, by charging Medicaid a standard fee rather than a percentage of cost, could slash $75 million from the CDPAP. The New York State Department of Health says it won’t affect the program or the more than 70,000 people who use it to find aides and caregivers. Many people involved say they find that hard to believe.

“[The government is] not thinking about the ramifications of this. We’re lifelines to people who need it.”

What is the CDPAP and why is it being targeted?

The CDPAP was created in 1992, formally called the Patient Managed Home Care Program until a name change three years later.

In 2000, there were 1,000 people using it for in-home healthcare. Two years later, more than three quarters of county health departments had active CDPAP services, and by 2008 the number of people using the program had increased by 60%. The enrollment numbers have grown since then. The beauty of the program, say those who use it, is that it allows care recipients who are on Medicaid—called consumers—to choose their aides, hiring and firing them as necessary. The alternative is to allow a home health agency to do the choosing for you. Under the CDPAP, even friends and certain family members can be trained to serve—and be paid—as aides.

Hiring your own personal assistant is like being in charge of personnel in a small business, says Joseph Policastro, manager of the organization Community Care in Smithtown.

“Part of the big issue and what Cuomo is [focusing] on is a misconception of what a CDPAP agency does. The technical word for a CDPAP agency is a fiscal intermediary (FI), so in other programs and common knowledge, a FI just by the name means payroll—just kind of being the person that sends the paycheck,” Policastro said. “We’re not simply a payroll program. We don’t just send out checks... it really is a personalized program.”

Currently there are about 550 FIs in the state. The Department of Health notes four in Sullivan County: the Independent Living Center and Independent Home Care, both in Newburgh; Access: Support for Living and Any-Time Home Care in Middletown.  It is not immediately clear whether any or all of these agencies would be affected.

A group of protesters in neon orange shirts that say #SAVECDPA
Disability rights advocates, along with people who use CDPAP, gathered in Albany February 11 to protest the potential cuts. 

Gov. Cuomo’s office has not responded to TRR’s requests for comment on why they’re making alterations to the program.

However, in June of last year, the U.S. Department of Health and Human Services’ Office of the Inspector General published a report that said New York had improperly claimed at least $74.8 million in Federal Medicaid reimbursement during an audit period under review. “New York’s lack of effective monitoring of the CDPAP leaves the program vulnerable to misuse of federal funds and could potentially place beneficiaries at risk of harm.”

Cuomo’s proposal could root out anyone abusing those funds, some say.

Those who work for CDPAPs, or FIs, in the area, say that’s not the case. That actually, FIs help to eliminate fraud by checking logs and making sure that personal assistants are working when they claim to be.  Bryan O’Malley, executive director at The CDPA Association in Albany, said that the program has been a victim of its own success. “CDPA was a small program that was predominantly used by the non-elderly disabled population. With the shift to managed care, the senior population began utilizing it much more.”

The ‘consumers’

Matt Youngfrau is a former journalist and visually impaired cancer survivor who lives in South Fallsburg. He has been using CDPAP for home healthcare for seven years.

“With my home health aide, I have become physically, mentally and emotionally healthier,” he said.  “She got me eating well—I’ve lost a tremendous amount of weight. Through guidance and assistance, my diabetes is under control. In fact, I am now a Diabetes Peer Mentor... Without her, I would be mostly alone.”

Being able to control who cares for her has also been critical for Kaplan—disability rights advocates call it being in control of “who touches your body.”

“You don’t want to spend eight hours a day with someone who clearly would rather be getting a root canal than spend time with you,” she said. “The PCAs that I have hired are emotionally invested in their work, they care,” Kaplan continued.  “At the end of the day, if you got to a point with your health where you needed assistance with... things that are very personal and intimate—wouldn’t you want a say in who comes into your home and does these things?”


Mary Ackerman, center, with her children. Her
son, right, requires round-the-clock care that
was hard for Ackerman to manage before the CDPAP.

The caretakers

 
Mary Ackerman from Elmira is a single mom with a lot to manage.

Her son Brady, almost 20, has been diagnosed with a developmental disability, autism, OCD, a severe anxiety disorder and agoraphobia. He requires round-the-clock care.

“I completely rely on this program for our survival,” she wrote in a letter to Gov. Cuomo protesting cuts to CDPAP.  “[Before CDPAP], I was basically trapped in the home with him 24/7. He was often angry and sometimes violent due to medications… My world revolved around his care and I suffered for that. I had to rely on family and neighbors for simple things like getting my mail and food staples from the store.”

The program changed everything, she said. Brady now helps to choose his own staff. “I am able to spend time with my daughter, my parents and even some friends on occasion,” Ackerman wrote.  “It’s been several years since I’ve been afforded such a luxury.”

Joyce Simons, a friend of Ackerman’s whose daughter also needs in-home care, wasn’t sure what to predict. “Either [her daughter] will have to go into a home, or I would have to quit work,” she said. Dawn Allen, who works for Companion Care of Rochester, in Monroe County, looks out for a long-time friend with MS. “Our daughters grew up together,” she said. The hours are long—more than 100 hours a week. That’s what it takes to care for someone who is cognitively sharp but needs help to do everything physically.

“I take her to the doctor, cook, make sure she takes her meds.” Plus Allen acts as her companion, who finds out what would make her friend happy or comfortable and does her best to provide it. “People depend on these aides,” Allen said. “[The government is] not thinking about the ramifications of this. We’re lifelines to people who need it.”

Those involved in the program from all ends—personal assistants, those who need in-home care, mothers and aides—don’t know what to expect as Cuomo moves forward with his proposal. “The fight [is] to kind of keep it as the top priority,” Policastro said. “New York State fought so hard back in the ‘70s and ‘80s to have this program… the fact that they’re trying to make cuts…It could definitely be a crisis.”

 

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