Care providers for the developmentally disabled struggle to keep workers

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When he’s not leading his gospel music group, Isaac Brown works 16-hour shifts at the Arc of Alachua County, a community care provider for people with developmental disabilities.

Brown, 36, of Gainesville, is a DSP, or direct support professional, whose responsibilities range from helping patients get dressed to administering seizure medication to office work.

“Your heart has to be in it in order to get the job done,” said Brown, who has two relatives with disabilities. “If you’re just looking for a paycheck, this is not a job or profession for you.”

DSPs are in demand across the country – and so Brown works 90-100 hours each week for about $12 an hour. Inadequate government funding, the Florida minimum wage increase and stressors related to the COVID-19 pandemic have led to the shortage.

The Arc of Alachua County is short 69 DSPs and is running an $11 million budget deficit – its largest in its 55-year history, according to a top organization official. 

Advocates across Florida say it’s the worst such shortage statewide in recent memory. 

Isaac Brown, 36, has worked for nine years at the Arc of Alachua County, a community care provider for people with developmental disabilities. An important part of his job involves administering medication to clients, but he also incorporates singing into his time with them. (Jack Prator/WUFT News)

On Nov. 4, the Florida Legislature’s Joint Budget Commission approved $1.2 billion requested by the governor’s office for home and community-based healthcare providers.

State Sen. Aaron Bean, R-Fernandina Beach, who sits on the budget committee, told the commission that this money is primarily for “providers who are struggling right now.” It will also include bonuses for employees who now make little more than minimum wage, Bean said.

The federal funds come from the American Rescue Plan Act, the $1.9 trillion stimulus package passed by Congress and signed into law in March. 

The Florida Agency for Health Care Administration will use care providers’ quarterly spending plans to guide funds distribution, said Tom Wallace, the agency’s deputy secretary.

Community providers are now waiting on AHCA to develop applications for the relief money before it can go out to employees and patients.

Arc of Florida CEO Alan Abramowitz said the nonprofit had been asking the legislature to increase wages for its DSPs even before the pandemic began.

“They are in extreme survival mode,” Abramowitz said.

He said the federal funds would help Arc and other similar organizations recoup money lost during the pandemic.

In April 2020, the Arc of Alachua County shut down its day programs, including six-hour classes that teach patients cooking, math, reading, writing, self-care skills and arts and crafts.

Yliana Eberts (left), shares a moment with her daughter Carmen in the daughter’s apartment in Gainesville. Carmen has Prader-Willi syndrome, a rare developmental disability that affects her hunger levels and behavior. (Courtesy of Yliana Eberts)

Yliana Eberts, 77, said her daughter, Carmen Eberts, 56, misses going to bingo nights and bowling events held at Arc, located on Northwest 83 Street across from Santa Fe College.

Carmen Eberts – who has Prader-Willi syndrome, a developmental disability that leaves her always hungry and causes behavioral issues – lives in an apartment in Gainesville with 24-hour care. Her Medicaid waiver plan covers three DSPs, but her mother said she can’t find reliable people to help her daughter.

But Yliana Eberts said only one of the caretakers shows up to work consistently.

“(Carmen) takes the television, and she throws it on the floor. She turns over furniture, she bites herself and she picks her skin until she bleeds,” Yliana Eberts said. “It’s very important to have the right kind of people who have a behavioral program to help to handle them.”

Yliana Eberts said those responsible for people with disabilities are neglecting the crisis.

“I can’t believe this,” she said. “This is almost like science fiction to me.”

Stacy Ward, family support director for the Prader-Willi Syndrome Association in Sarasota, said she hasn’t seen such a workforce shortage in her 20 years in the industry. Ward said “professionalizing” the work of a DSP is a big part of the solution.

“We live in a society that doesn’t value people who work in direct care,” she said.

Arc of Alachua County CEO Mark Swain said he needs 160 employees to run at full capacity, and that he cannot accept new clients despite group home vacancies. During summer 2020,  Arc gave DSPs $100 bonuses just to show up for their shifts.

“The ship is sinking right now,” Swain said. “And people can see the ship sinking.”

In October, Arc began to buy supplies like food and water in case the organization had to shut down its group homes. If it loses 10 more DSPs, current clients will have to live in the Arc office building, according to the nonprofit’s emergency plan.

“It hasn’t happened yet, but we’re at the point now where we have to have that plan in place,” Swain said. “It would be irresponsible not to.”

He said Arc is asking the legislature for a 16% increase to the state’s current provider rates, which could help get DSP wages to between $14-$15 an hour. If these rates don’t rise, he said, Arc might not be able to keep up with Florida’s annual minimum wage increase.

“It is 100% the responsibility of the state of Florida to fund these services, so people can be safe and healthy,” Swain said. “And right now, it’s not.”

The U.S. government funds about 60% of services arranged by community-based providers through the federal medical assistance percentage, with the remainder paid for by the state.

Swain said he hopes care providers can start applying for the recently approved funds soon. He also said Arc is also hurting from Florida’s minimum wage moving to $10 an hour.

After Gov. Ron DeSantis raised wages for state workers at developmental institutions in June, Arc has lost employees to disability care jobs at state institutions. 

“These are professionals who have a huge responsibility,” Swain said. “This was never a minimum wage job in the first place.”

Brown has cared for clients as a DSP at Arc since October 2012.

“The joy that I get out of it is seeing the smile on their faces after I’ve been a great help to them,” he said. “I just enjoy helping – enjoy making people laugh.”

Brown said he’s received job offers from other care providers but is content to work overtime.

“The grass may look greener on the other side and then when you get there, it’s not what it’s all made out to be,” he said.

About Jack Prator

Jack is a reporter for WUFT News who can be reached by calling 352-392-6397 or emailing news@wuft.org.

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