What’s behind the shortage of workers who support people with disabilities

Amna Nawaz:

They are the largest work force in the United States, the nearly five million direct care workers who support older adults and people with disabilities. But despite high demand, many are paid little more than minimum wage.

As Judy Woodruff reports, a longstanding work force shortage means people with disabilities who depend on those workers to live independently and access their community are left without the support they need.

It's part of our series Disability Reframed.

Judy Woodruff:

For the past 14 years, Luciana (ph) Offlee has been by Tyler Corkin's (ph) side. The 33-year-old has cerebral palsy and autism. He mostly communicates using sounds and hand gestures.

China Offlee, Direct Support Professional:

That's some good bacon?

Tyler Corkin, Louisiana Resident:

Yes.

China Offlee:

Yes.

Judy Woodruff:

Tyler depends on Luciana, who goes by the nickname China, for nearly every part of life in his Maurepas, Louisiana home.

China Offlee:

Feeding him, transporting him back and forth out of his chair, bathing him, giving him medication, his medication, and just keeping him comfortable.

Judy Woodruff:

So you do pretty much everything for him?

China Offlee:

Yes. And I also wash his laundry, make his bed. Yes, I do a lot.

Judy Woodruff:

She says the most rewarding part of her job is exploring the community with Tyler.

China Offlee:

Yes, you're getting excited, huh?

Judy Woodruff:

Who loves music and being around others.

China Offlee:

Just being able to take him out and just doing things with him is entertaining for him. And it's giving him a chance to get out and be around people.

Judy Woodruff:

But for each hour China is with him as a direct support professional, or DSP, she's paid $9. She works seven days a week, and even with overtime pay, still has to hold a second job to support her family.

There's a shortage of people who do the work you do, direct support professionals.

China Offlee:

Yes.

Judy Woodruff:

Why do you think that is?

China Offlee:

Because they're not paying enough. That's why they're leaving. It's no benefits, not enough pay. You have got to have a heart to do this kind of work.

Judy Woodruff:

What's the hardest thing about it?

China Offlee:

Just being away from my family is the hardest.

Judy Woodruff:

There's been a national shortage of DSPs like China for decades, largely because state officials have limited Medicaid funding that helps cover their wages and career advancement has been difficult.

The national turnover rate for DSPs is more than 40 percent, with rates reaching over 50 percent in some states. Advocates say a lack of investment in Medicaid nationwide drives the problem. It is the largest funding source for the services that many DSPs provide.

In Louisiana, those who hire DSPs say there is simply not enough money to pay them more. Those employers are expected to cover a range of costs that include wages, health insurance and training, typically paid for by Medicaid, at rates that state officials ultimately decide.

Two years ago, the Louisiana state legislature allocated the money that allowed for a $9-an-hour wage floor for direct support professionals, a work force that helps to sustain some of the more than one million people in this state with disabilities.

State Sen. Franklin Foil (R-LA):

It's hard to find people to come and take these difficult jobs when you have a rate that low. So we need to get the rates up to make it more competitive.

Judy Woodruff:

Louisiana Republican State Senator Franklin Foil has family members with disabilities, including a son with autism and a sister with Down syndrome.

From Louisiana's capital, Baton Rouge, Foil has pushed to increase the state's Medicaid rates and for DSPs to be paid more.

What do you think it would take to persuade some of your colleagues in the state legislature that they needed to improve the Medicaid reimbursement rate in Louisiana?

State Sen. Franklin Foil:

I think part of it was, there was always a pushback because it would cost more money. It's an easy issue to sell once you explain to people and give them the real-life experiences to get them on board. But it does cost money. And when you have limited funds, you have to allocate.

But this, in my opinion, is not an option. It's something that we have to do, because these people have no other way in many cases to get the support they need.

Judy Woodruff:

This is it.

State Sen. Franklin Foil:

This is it.

Judy Woodruff:

Eighty miles southeast, in New Orleans, 26-year-old Jakeel Abdullah has seen the DSP work force shortage firsthand.

Abdullah was diagnosed with bipolar disorder in high school and has chronic back pain after a surgery left him without feeling in his right leg. He uses a cane to get around the city and the community college where he takes classes in game design.

Jakeel Abdullah, New Orleans Resident:

When I wake up, I know I'm disabled. I can feel the pain constantly.

Judy Woodruff:

He says he's struggled to find a direct service worker, or DSW, as they're known in Louisiana, to help with basic physical needs, including personal hygiene and transportation to school and social activities.

Jakeel Abdullah:

Finding someone you can trust to come into your home and put your life potentially on the line to have them around you daily, it has been a struggle that makes me not even want to live here, honestly.

Judy Woodruff:

Abdullah also thinks there should be an increase in hourly wages and that all DSWs in the state should go through a certification program.

Jakeel Abdullah:

I have had DSWs tell me, this is more of a resume filler or a stepping-stone to more real work, such as working in hospitals and nursing homes. No one wants this to feel like a part-time job or it's not a career.

Judy Woodruff:

Over 1,000 miles away, in Brooklyn, New York, 25-year-old Fatimah Howard is just starting her career.

The mother of three was hired as a DSP in January. She works in a day habilitation program, where people with disabilities attend exercise classes, volunteer and visit community sites. Today, they're going to the library.

It's where Fatimah and her co-worker Nate teach a sign language class so their group can learn to communicate with a deaf peer.

Fatimah Howard, Direct Support Professional:

Exactly.

I love to do it because I know that they appreciate me and that they look for me to be here every day. So, the days I'm not here, they call my phone to ask if I'm here. They're like, am I coming, when I'm coming back. They depend on you. And I let them know that they can really depend on me for whatever they need.

I take it seriously. I love it.

Judy Woodruff:

Does that surprise you that there aren't enough people doing this?

Fatimah Howard:

I mean, it doesn't surprise me, because companies like this are underfunded, and the people who make decisions on how much we get paid doesn't see it. They don't play the role that we play every day, so they don't know how much work we actually do, which is sad for the people we support, because they love their staff.

They want to continue to hire the same staff, not just people come and go.

Judy Woodruff:

In her spare time, Fatimah takes courses as part of the E-Badge Academy, a DSP certification program. She says it gives her the chance to refine her skills.

Fatimah Howard:

It makes a difference, because we learn how to provide ethical support. And that's important. You learn about the safety. You learn advocating with and for the people we support and making sure they advocate for themselves as well.

Kerri Neifeld, Commissioner, New York Office for People with Developmental Disabilities: These are professionals. They're doing professional jobs and providing that credentialing and career pathways, so that people can continue to grow and develop their professional skills in our field.

Judy Woodruff:

Kerri Neifeld is the commissioner of the New York state Office for People with Developmental Disabilities. Last year, her office partnered with a DSP advocacy group to offer credentialing to those who do this work in New York state and bonuses up to about $2,000.

Kerri Neifeld:

What's happening for our providers is, it's changing the culture within provider organizations. It's letting staff know that OPWDD, the state, the providers respect the work that they're doing, treat DSPs as professionals and want to see them succeed.

Judy Woodruff:

Back in Maurepas, Louisiana, DSP China Offlee says she doesn't always feel that respect for her work.

China, what would you say to people who don't understand how hard this work is and who are not sure if more money should go into paying higher wages?

China Offlee:

I think they know. They know that we should be paid more. It's just that they're not giving it.

Judy Woodruff:

Money she says she and so many other DSPs need that allow people with disabilities to more fully live their lives and be part of their communities.

How would you describe your relationship with Tyler after all these years?

China Offlee:

Well, he considers me his person. He really does.

Don't you, Tyler? Yes.

Judy Woodruff:

So he considers you his person.

China Offlee:

Yes.

Judy Woodruff:

And what do you — how do you think of him?

China Offlee:

Well, I really consider him as one of mine, actually.

Judy Woodruff:

And she says she will keep caring for Tyler as long as she can.

For the "PBS NewsHour," I'm Judy Woodruff in Maurepas, Louisiana.