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Advocates say caregiver staffing for people with disabilities is a crisis lawmakers must fix

Jerri Lynn Sparks (left) with her son, Jared Kaiser (wearing hat), and S
Photo provided
Jerri Lynn Sparks (left) her son, Jared Kaiser (wearing hat), and Shamia Nicholson, Jared's direct support caregiver, enjoy Thanksgiving brunch with Sparks' extended family. Sparks considers Nicholson part of the family and said she joins them on Thankskgiving Day each year.

Gov. Kathy Hochul's proposed budget does not go far enough to address a worsening shortage of caregivers for people with intellectual and developmental disabilities, advocates say.

Worker pay is not keeping up with inflation. Starting pay is just over $16 an hour. And the nonprofits that employ the caregivers claim the 1.5% funding increase Hochul is seeking won't even help them cover the costs of inflation.

According to data from the Arc New York, the average wage for caregivers was twice the minimum wage 15 years ago. But years of disinvestment led to a workforce crisis.

There is currently a 20% statewide vacancy rate among direct support professionals (DSPs) who work for nonprofit service providers, said Erik Geizer, CEO at the Arc New York. 

"Many have to take multiple jobs just to make ends meet. Many are food and housing insecure," Geizer said. "This should not be acceptable to the governor; it should not be acceptable to anyone." 

These are skilled workers who attend to the social, emotional, physical, and psychological needs of people with a range of disabilities.

While Hochul outlined plans for additional employment, housing, and services for that population in her budget proposal, providers want the caregivers assisting them to get a $4,000 raise to help to address the staffing crisis. 

"We cannot staff the services that exist today, let alone be able to staff the new opportunities that she's proposed for tomorrow,” Geizer said. 

The worker shortage has forced some of the residential homes and programs operated by the Arc New York to close or reduce the number of hours they provide services. 

Research shows that providing uncompensated care for a parent, sibling or other close relative or friend can be a drain on one’s bank account.

Jerri Lynn Spark's son, Jared Kaiser, lives in a group home in Macedon that is managed by Hillside Family of Agencies.
Kaiser, who is 26, has autism and cannot live independently, his mother said. She considers Jared's direct support team to be members of her family. 

“Jared has a lot of trust in them," she said. "There’s mutual respect.” 

But Geizer warned that staff shortages threaten to disrupt those important relationships and the continuum of care. And that directly affects the people receiving the services. 

"They are often getting care and support and services from people they are not familiar with," he said. "I think you can imagine, some of the care we provide is intimate care, and obviously, working with people you're not familiar with, comfortable with ... that's not something that is fair or just." 

Sparks said Jared learned this himself a few years ago when he encountered a fill-in support worker. 

"Those caregivers, not being familiar with my son's triggers or with the rules of that group home, actually placed Jared in a face-down hold, which is illegal,” she said.

Sparks’ fears about what will happen to her son when she is no longer alive keep her up at night, she said.

"So, I'm trying really hard to get policies and budgeting in place now," she said, "because Jared has a right to live with dignity." 

Sparks and other advocates are counting on state lawmakers to approve additional funding to attract and retain more caregivers and stabilize New York's DSP workforce. 

Providers also are asking for a 3.2% budget increase to overcome inflation, and to support their programs and services.

Last year, the Legislature boosted funding by 4% — 1.5% more than Hochul's original proposal.

The next state budget is due on April 1.

This story is part of Dialogue on Disability Week -- a partnership between WXXI and Al Sigl Community of Agencies -- in conjunction with the Herman and Margaret Schwartz Community Series.

Beth Adams joined WXXI as host of Morning Edition in 2012 after a more than two-decade radio career. She was the longtime host of the WHAM Morning News in Rochester. Her career also took her from radio stations in Elmira, New York, to Miami, Florida.