State must raise pay for adult caregivers, advocates say

DOVER — In 2018, the General Assembly unanimously passed legislation to raise the hourly rates the state pays to subsidize services provided by caregivers for individuals with intellectual or developmental disabilities.

The bill phases in increases for the caregivers, who are also known as direct support professionals, so that over a three-year period the reimbursement would grow from 75 percent of the hourly market wage established in a 2014 study to 100 percent.

Advocates hailed its passage, with one nonprofit calling it a “milestone” and supporters speaking of the good it would do in helping attract and retain direct support professionals, benefiting both those employees and the population they care for.

But the measure does not bind the General Assembly to fund those increases, and Gov. John Carney’s proposed budget marks only a small increase in the rate.

His plan for the fiscal year starting July 1 would bump the state funding from 81.2 to 83.3 percent of the market rate at a cost of just under $2 million to Delaware’s General Fund.

That hike, many advocates said during a Joint Finance Committee hearing Thursday, is not enough.

Officials from the Division of Developmental Disabilities Services detailed to lawmakers on the committee their agency’s work and budgetary needs, followed by testimony from more than a dozen members of the public. Both direct support professionals and parents of individuals with disabilities urged JFC to increase the rates beyond what Gov. Carney recommended.

“I have faced many hardships throughout the years, too numerous to mention all,” Tamika Crosell, who has worked as a direct support professional since 1995, said. “I have had times where I had to choose whether I should pay my rent in full and chance having my car insurance canceled or buying unhealthy, cheap foods just so I can stretch my paycheck. …

“I have also left this field once or twice because there were other jobs that pay more, and I know of many others who have done the same. Those of us who are passionate about supporting individuals with disabilities are being forced to look elsewhere for employment even though that is not where our hearts are.”

Direct support professionals help adults who have conditions such as autism, Down syndrome or cerebral palsy. Care can include assisting them in finding employment or something as basic as feeding or bathing them. It is, many speakers said, a demanding job but also a rewarding one.

One thing it is not is lucrative.

At 81.2 percent of the 2014 market rate, most direct support professionals are subsidized by Delaware to the tune of $10.35 per hour — just $1.60 more than the state’s minimum wage.

The low pay creates tremendous turnover and necessitates some direct support professionals work two jobs to make ends meet. That turnover can be difficult for care recipients, many of whom need a stable routine.

“My son Eddie’s agency recently lost a couple of highly qualified individuals who had to leave to make a living wage for a family. Eddie asked me why they left. I told him they needed more money. He told me, ‘I need them. I have money. I can share with them,’” said William Drake.

As of December, the Division of Developmental Disabilities Services was serving slightly more than 4,900 individuals, about 74 percent of whom lived at home. According to a 2015 study from the University of Colorado, about 26 percent of Delawareans with intellectual or developmental disabilities lived with a family member who was at least 60 years old.

“These aging parents, including my wife and me, cannot provide a place to live for our adult children indefinitely,” said Jehangir Vevai, whose daughter Katy has special needs. “This is a terrifying thought for all of us.

“What will become of our beloved children? Where will they live when we can no longer care for them? Will they be able to keep their jobs and live in their local communities? Or will the state have to reopen institutional beds to meet the future need for residential services?

“Our feeling of dread for the future grows worse when we think of the DSPs who work for very little pay, because we wonder if there will be enough of them to care for the thousands of children who are going to outlive us.”

The Department of Health and Social Services last month completed a study recommending raising the wage benchmark from $12.75 to $14.11 for caregivers offering residential- and facility-based services and to $15.06 for those providing outside daily care. For employees in the fields of community participation, supported living and supported employment, it calls for increasing the hourly pay from $17 to $18.84.

Counting the $2 million in the governor’s recommended budget and the federal funds it would leverage, the state would subsidize caregivers at about 66 percent of the 2019 benchmarks.

“The rates all still increased, it’s just a matter of being further away from the goalposts,” division Director Marie Nonnenmacher told JFC.

Fully subsidizing the market rates would cost about $93.6 million more, and although federal funding would cover more than half of the increase, the added expense to the state would still exceed $40 million.

While pricey, it’s a cost Delaware must pay, several people said Thursday.

“Let this be the legislature that does the right thing, the legislature that funds the system as necessary and preserves a workforce that benefits us all,” said Micki Edelsohn, whose son Robert has intellectual and developmental disabilities as a result of an injury at birth.

“Until that happens, I, like thousands of other family members across the state, will remain awake at night worrying what will happen to our loved ones when we are gone.”

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