For many Hudson Valley residents, the arrival of the novel coronavirus has transformed everyday life. There’s the toggle between panic-gripped hand washing and irrational moments of peace, and the odd sensation of days bleeding into one another, confined as we are to our homes. But for Sage Jobsis of Rosendale, who uses a wheelchair due to having multiple sclerosis, being stuck indoors is familiar. What’s unnerved her is the realization that everyone else is pent up, too.
“I always felt like, ‘I have to do this, but the world will go on,’” Jobsis says. “And now, the world’s not going on.”
Adding to her anxiety is the fact that New York State is poised to undercut a Medicaid program that she relies on. Known as Consumer Directed Personal Assistance (CDPA), it allows elderly and disabled people to hire and train home health aides or personal assistants of their choosing, such as family members or friends, rather than be assigned one by an agency. Jobsis hired her partner, Mark Ressl, to help her with everyday tasks like showering, cooking, and getting from her bed into her wheelchair. Her vision is shaky, and she can lose her balance easily, but being cared for by someone she knows and trusts “lets me be a little bit in charge of my life, which is amazing because a lot of things have been taken out of my control,” she says.
But a proposal revealed on March 19 would cut $400 million from state Medicaid over the next year, as part of $2.5 billion in cuts over several years. The slashing of Medicaid, which currently supports the health of an estimated one in three New Yorkers, according to the domestic workers advocacy group NY Caring Majority, would shrink CDPA. And with the coronavirus ripping through New York City and its suburbs and into the Hudson Valley, advocates worry that seniors and people with disabilities could be forced to leave their homes for vulnerable institutional settings.
“I don’t think anyone is ready, particularly in light of where we are now,” says Bryan O’Malley, executive director of the Consumer Directed Personal Assistance Association of New York State. “If anything, nursing-home beds are going to start being converted for other more pressing needs.”
Care From Someone You Know
CDPA began as a grassroots movement in the late 1990s to deinstitutionalize people with disabilities. Today, it serves an estimated 70,000 consumers, and 100,000 personal assistants throughout New York State, including more than 3,000 people in the Hudson Valley. Among them are Jobsis and Ressl. After her diagnosis about a decade ago, Jobsis left New York City and returned to her hometown to be closer to family. Since then, her condition has become more difficult to manage, which has led her to advocate for a more accessible Hudson Valley through an organization she and Ressl started called Thrive HV. Along with the help he provides at home, Ressl also accompanies Jobsis to twice-weekly physical-therapy sessions in Albany.
“I get to hang out in the car with someone that I know. And it lets the physical therapist interact with Mark, who lives with me,” Jobsis says. That means he can guide her through daily stretching exercises correctly.
Ressl is paid $13 per hour for 21 hours a week of caregiving, but he said he ends up working many more than that, in addition to side jobs in carpentry and teaching woodworking to kids. A recent in-home assessment determined that Jobsis needs about twice as many hours of in-home care as Ressl is being compensated for. They’d been eagerly awaiting confirmation and the go-ahead for more paid hours.
“Instead of that, we’re getting ambiguous information about how programs are getting cut,” Ressl says.
The Rush to Redesign Medicaid
Governor Cuomo has a budget to balance, a task made all the more difficult with the economic hit that COVID-19 will inflict, and trimming Medicaid—and the very popular CDPA program—is one way to help do it. In laying out its proposal, the governor-appointed Medicaid Redesign Team II wrote that “spending on long-term care—more specifically, personal care and consumer-directed personal-care services (CDPAS)—is growing at an unsustainable rate and is the single largest cause of the state’s Medicaid structural deficit.”
It’s true that total Medicaid spending statewide grew by about 23 percent between 2011 and 2019, but the growth in New York State has happened at about half the rate as the nation, and it’s mostly because of new enrollees under the federal Affordable Care Act. Nonetheless, CDPA has been on the state’s radar as a potential cost-cutting target for months.
For Douglas Hovey, president and CEO of Independent Living Inc., the Medicaid redesign is “absolutely necessary.” Hovey’s company provides services and advocacy for people with disabilities and the aging population in New York State, including the Hudson Valley, and runs a CDPA “fiscal intermediary” (which processes payments for caregivers) called Independent Home Care. He only wishes that “folks with disabilities who utilize those services” had been invited into the discussions.
“This is really an ugly time for people with significant disabilities who desperately depend on in-home support for the most basic necessities of life,” Hovey says.
How CDPA Could Change
The billions of dollars in additional Medicaid funds included in the federal stimulus bill would only be available to New York if the state’s current Medicaid program remains intact. Governor Cuomo had been trying to get around that by lobbying Congress to strike a provision known as the “maintenance of effort” clause, but his efforts appear to have failed. Reports suggest he’s also seeking greater authority in the budget to make changes in the months to come, as the financial fallout of coronavirus becomes clearer.
At that point, CDPA could fundamentally change. For example, people who only need help with housekeeping tasks, like laundry and grocery shopping, but who can handle their own personal care, like bathing and walking, could be ineligible. That would be disastrous for many working people with disabilities, according to O’Malley, citing people his organization has advocated for, including a visually impaired man who needs his shirts ironed for work, and a woman with very frail limbs who can’t do laundry on her own.
Medicaid Matters New York, which advocates for New York State residents who receive health care through the Medicaid program, has collected stories from numerous people who could lose their CDPA eligibility with the proposed cuts.
“It gets very dicey when the state steps in and says you’re not disabled enough to receive services. Everyone’s life situation is different. That’s why we do assessments,” O’Malley says.
But the change that O’Malley says “terrifies everyone with any kind of significant disability” is a proposed independent review process to determine if people receiving more than 12 hours of in-home care through CDPA are “safe to live in the community.” Under the provision, someone could be deemed unfit to live at home, and forced into an institutional setting.
“And really what that means is, ‘You cost too much to live in the community,’” O’Malley says.
Left ‘High and Dry’
CDPA is popular for a reason. The thought of a stranger showing up at your home to help you bathe or prepare your lunch can feel especially unnerving to those with limited mobility or impaired vision. And as Jobsis noted, hiring and training an aide empowers people to mold their caregiving to their specific needs, whether that’s cleaning their tracheostomy tube or washing their hair. As for caregivers, many have given up other jobs or switched careers to help take care of their loved ones or friends.
“People have changed their lives,” says Ressl.
For now, he and Jobsis don’t know what will happen. Things could work out, they acknowledge. But even if they don’t lose access to CDPA, it’s just as hard knowing that others will, if Governor Cuomo gets his way.
“If it works out for me, that also means it’s not working out for an awful lot of other people who also didn’t do anything to deserve it, and are still being left high and dry,” Jobsis says.