Disability nonprofits fear crisis because state doesn't fully fund workers

Sharuanda Robinson has known she wanted to work with people with intellectual and developmental disabilities since she was 7, inspired by watching her mother do it.

Even though her mother had to work an additional full time job to support the family, Robinson was not deterred from also becoming a direct support professional.

The connection she feels with the people she serves at C.E.R.T.S., a day program for those with disabilities, has always trumped low pay and other drawbacks, she says. 

But that low pay is creating a huge churn in the staffing of such jobs, and nonprofits that provide disability services say they haven't been able to increase employees' salaries because of lack of state funding.

While the state Joint Finance Committee approved a hike of $4.7 million for the agencies, it's only a quarter of what the agencies say is needed to reach market level pay,and the agencies worry that the increase may not make it through the full Legislature.

Jim and Patty Clarke of Hockessin worry about their daughter Amanda, who goes to C.E.R.T.S. day care. The 26-year-old is nonverbal, in a wheelchair and is fed through a feeding tube. Since she has fragile bones, the Clarkes are afraid inexperienced workers who aren't on the job long enough to be thoroughly trained could accidentally break one of Amanda's bones when lifting her out of a wheelchair. 

“It’s a matter of time almost before we think something is going to happen, because it’s a tough situation," said Jim Clarke, who is on C.E.R.T.S. board. "These people have a passion for what they do. They want to take care of people like Amanda. But they want to make a decent wage."

80 percent turnover

C.E.R.T.S., which stands for Collaborative Effort to Reinforce Transition Success,
provides occupational and physical therapy as well as activities such as art therapy, group outings and adaptive sports for the disabled. Robinson has worked there for more than a decade, almost the entire time the agency has been open.

She knows participants' favorite colors, songs and hairstyles. She can translate the meaning of their kissing faces and squeals. She can even tell when their bowel movements might be irregular.

She is one of the few direct support professionals to have worked at C.E.R.T.S. that long.

In the past year, the agency has experienced a turnover rate of 80 percent among direct support workers. 

"We had a few years when it was real rough," she said. "I was training 10 staff members within six months." 

Direct support professionals are on the front lines of care for 5,000 Delawareans with intellectual and developmental disabilities. They help feed and bathe people in group homes and work with them at day programs like C.E.R.T.S.

Right now, the average pay for a DSP working in Delaware is $11.50 an hour — below the starting pay for a cashier at Walmart, advocates say.

Nonprofits say they haven't increased salaries because the funding rate the state uses to subsidize these services has not kept up with inflation or the rising cost of health care, according to the industry group Ability Network of Delaware.

Right now, the agencies are receiving 75 percent of what a state report said they should be getting to fully fund their work. The last time the Delaware Legislature fully funded these nonprofits was in 2004.

These groups have asked for an additional $9 million in funding this year, which they say is less than half of the money needed to reach the market rate. Last week, the Joint Finance Committee allocated an additional $4.7 million to improve services. 

Advocates say this is not enough to fix the problem. 

The current pay scale has required some agencies to hire employees who don’t have previous experience working with people with disabilities, which would be their preference. It has also forced current employees to take second jobs. 

"Nonprofit providers, we’re used to making do," said Vivian Turner, executive director of C.E.R.T.S. "We’re used to getting by, we’re used to stretching the dollar as much as we can. But at some point, when you stretch, say a rubber band, it’s going to break.

"I hate to think of what sort of catastrophe could happen."

C. Thomas Cook, executive director of Ability Network of Delaware, said the government funding goes toward the agencies' wages, benefits, supervision, training and the costs of running a business. 

In 2014, the Department of Health and Social Services commissioned a study that found Delaware would need to pay an addition $20 million a year to reach the fully funded market rate for DSPs. 

Advocates hope the state will pass legislation mandating that services are fully funded by fiscal year 2021.  

At C.E.R.T.S, the lack of funding has created a $300,000 budget shortfall, Turner said. She hasn't been able to give raises to her staff for several years, fill vacancies or purchase new equipment. 

In fiscal year 2017, Turner's agency hired 14 people. Eleven people left.

She said pay was often the reason why they quit. The nonprofit’s starting salary is $12.75, she said.

Hiring people without experience isn't always bad, she said. It allows them to train their employees the way they want and not have to correct any bad practices.

“We much prefer they have some experience or exposure with people with disabilities, but we’ve had to be a little flexible with that,” she said.

Melissa MacCord, the C.E.R.T.S. program manager who hires DSPs, said it has been tough for both employees and participants to see people leave. She said participants can tell when morale is low and when DSPs are having a bad day.

Sometimes, they think it's their fault.   

Lisa Elias' brother Eric Sovde, who had intellectual developmental disabilities, considered the DSPs at Mosaic in Delaware to be his second family. When they left for higher-paying jobs, Sovde, who died at age 68 in 2016, would become extremely stressed and distraught, Elias said. 

He often called her crying on the phone. Sometimes, Sovde would experience panic attacks and try to hurt himself, she said. 

"It was very difficult," she said. "Luckily there were a few folks who hung in there."

Since 2012, Elias, of Townsend, has become involved with disability rights advocacy and met other people whose family members have disabilities. She's heard stories from mothers who noticed small bruises on their adult children's legs, likely from having their diaper roughly changed.

Elias said parents attribute this to inexperience. 

"Imagine if that was a baby in daycare," she said. 

Sharuanda Robinson, the DSP who has worked at C.E.R.T.S. for a decade, admits she has thought about leaving for a better salary. But she said leaving work she's passionate about wouldn't be fair to herself — or the participants she cares for. 

Robinson and her husband aren't able to afford daycare for their young children. So when Robinson works during the day, her husband takes care of the children. He works an overnight shift. 

She wants others to dream about going to into this line of work, just like she did when she was a girl, because it is rewarding in many ways. But she fears the pay could hold people back. 

“I really hope DSPs are given the opportunity to make the money they need to survive," Robinson said. "I would love to see in the future that a DSP is what a lot of individuals want to do in terms of their career.”

Contact Meredith Newman at (302) 324-2386 or at mnewman@delawareonline.com. Follow her on Twitter at @merenewman.