Adult caregivers say hike in state funding ‘sorely needed’

DOVER — With most of the budget in place, advocates and caregivers for individuals with intellectual and developmental disabilities are worried.

Not included thus far in the spending plan for the fiscal year that begins July 1 is the monetary increase the caregivers — more formally known as direct support professionals — are looking for.

That, those in the field say, is a huge issue.

“If you talk to any of these families, their biggest fear is these communities services won’t be sustainable. And I think a lot of people believe the ultimate outcome could be institutional services could have to be created to meet the need,” said Thomas Cook, executive director of the Ability Network of Delaware.

For about 15 years, the state has subsidized services for people with developmental disabilities. But the rates have seen little change, Mr. Cook said.

In 2018, the General Assembly passed legislation calling for phasing in increases for caregivers 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.

But while supporters considered the measure’s passage a triumph, the bill does not bind the General Assembly to fund the increase — and that’s not the only problem.

A study released earlier this year reveals the need is bigger than was thought: $42.1 million, not $22.7 million, over three years would be required to achieve parity.

The need is technically, according to the study, about $93.6 million, but state spending triggers a federal match exceeding 1:1, so Washington would pick up the majority of the tab for direct support professionals if Delaware offers an initial investment.

The current budget contains more money for caregivers, and Gov. John Carney’s budget proposal includes an additional $2 million that would bump the state funding level from 81.2 to 83.3 percent of the 2014 market rate.

Under the updated rate included in the 2019 analysis, however, even with that $2 million, direct support professionals would end up at just two-thirds of the benchmark.

At 81.2 percent of the 2014 rates, direct support professionals make $10.35 per hour — $1.60 more than the state’s minimum wage. Fully funding providers to 100 percent of the 2019 study’s rates would bring them up to $14.11 an hour.

It’s an increase many say is sorely needed.

Direct support professionals help adults who have conditions such as autism, Down syndrome or cerebral palsy. They assist recipients in finding employment or even perform basic functions like feeding and bathing them.

It is, many speakers said in a February budget hearing, a demanding job but also a rewarding one.

But one thing it is not is lucrative.

Many caregivers work multiple jobs to make ends meet, and turnover is tremendous: 42 percent among Kent-Sussex Industries’ 30-plus direct support professionals last year, according to KSI CEO Craig Crouch.

Every year, KSI serves about 275 people with disabilities. More than 70 percent of those clients still live with family members, some of whom would have to give up their jobs and take care of their loved ones if not for state-subsidized direct support professionals, Mr. Crouch said.

The nonprofit has trimmed all the fat in its budget and is in desperate need of increased allocations from the state, said Mr. Crouch, who feels decision-makers are “kicking the can down the road.”

KSI’s situation is shared by other nonprofits that provide care to Delawareans, and both Mr. Crouch and Mr. Cook worry the state will be forced to assume the duties of caring for thousands of adults with disabilities if more funding does not become available.

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.

One of the many Delawareans with disabilities is Cindy Jenkins’ 32-year-old son Matthew, who has cerebral palsy and receives care from C.E.R.T.S.

Over the past year, she estimated, “six or seven” direct support professionals have come to the Jenkins’ home to assist her son, and there have been gaps in coverage because of the difficulty employers face in trying to hire caregivers in Delaware.

“What that does to us is it means we have to retrain and retrain and we don’t have continuity of care for Matthew, and that’s a big deal for him because he really needs to have people that he can get to know and get to know him,” she said.

It’s not just that her son, like so many others in need of assistance, is more comfortable with a caregiver he has had for a while and has built a rapport with. Matthew Jenkins is nonverbal and has epilepsy, meaning his direct support professionals need to be able to recognize when he may be having a seizure.

Learning the signs, of course, takes time, and with a seemingly constant flow of caregivers, the necessary stability simply isn’t there.

Appearing before JFC in February, many caregivers and parents of people with disabilities pleaded with lawmakers to raise pay, telling story after story that tugged at the heartstrings.

“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,” William Drake relayed to the committee. “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.’”

While Sen. Harris McDowell, a Wilmington Democrat who co-chairs the budget-writing Joint Finance Committee, said he appreciates the need felt by caregivers, “there are a lot of things” that could be funded as well.

The committee’s co-chairs, as well as the executive branch, have advocated for limiting budget growth to avoid building unstable revenues in the spending plan, which could result in cuts in the future.

A spokesman for the governor declined to comment on the caregiver issue.

A handful of advocates have attended all three budget markup sessions so far, and they’ll likely be back today as lawmakers put some of the finishing touches on the spending plan. While those spectators wait, they can only hope their prayers are answered.

“There’s money. There is,” Mr. Crouch said, alluding to the state’s extra revenue.

Should the requested funding not materialize, caregivers and family members of people with disabilities fear the problem will only become worse.

But don’t count on them giving up.

“The folks that we serve can’t advocate for themselves,” Mr. Crouch said.

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