In caring for those with disabilities, support professionals face their own challenges

Story by: Anne McDarris

Photos by: Will Melfi

Graphic by: Angie Shen

CHAPEL HILL, North Carolina — For the last month, Natalia Edwards Fouts has eaten alone in the front room.

The rest of her family is in the kitchen, getting ready for dinner in their home in Chapel Hill. Her mothers, Melanie Edwards and Elizabeth Fouts, are putting food on the table — avocados, clementine slices, fish, rice —alongside the cutlery and glasses of water.

Emily Danes sits in the kitchen too and looks up at where Natalia is standing on the stairs. “Are you going to eat with us?” Danes asks.

“No.”

“All right,” she says. And that’s that.

A timer goes off, reminding Natalia that it’s time to come down for dinner. They have to use timers, Edwards says, or else it takes forever for their daughter to sit and eat.

Dinner is relatively quiet, a bit of soft conversation over the scraping of forks. Natalia talks with them from the other room where she’s eating. She wanders through the living room and the kitchen and then back to her seat.

When they’re finished roughly half an hour later, Danes pulls out a blue binder. On one page she marks off goals — things Natalia did or responded to well. She goes through it with a practiced hand. Fouts sits next to her, legs crisscross in the chair, petting one of their cats. Another timer goes off. Natalia finishes up in the other room.

Danes has worked with Natalia and her family for almost two years as a direct support professional, or DSP. Natalia, who’s 17, has autism and a moderate cognitive impairment, and Danes works with her on emotional and behavioral skills.

She spends half her work week – roughly 20 hours – with them. There are many more good days than bad, but sometimes she faces a two-hour tantrum or the trappings of a teenager who has trouble regulating her emotions. On those days, Danes will come back exhausted to the house she shares with three other people, make dinner, and go to bed.

Together, Natalia and Danes go to the YMCA, horseback riding therapies and music lessons. They go to the malls sometimes or stay at home. Natalia would have fewer opportunities to get out in public without her.

“I have dinner with them like twice a week,” Danes says. “I know what’s going on with the grandparents and the neighbors. It’s definitely a very personal work and I enjoy that about it. It may feel honestly like a second family – I know that’s cheesy.” She laughs. 

Danes graduated in May 2019 from UNC-Chapel Hill. She wants to be an occupational therapist one day, and began working as a support professional as an undergraduate.

“Everything we’re doing is built on the rapport we have,” Danes says. She and Natalia are honest with each other. They have inside jokes. They have intense bonds.

But there’s also a multitude of difficulties. People with intellectual or developmental disabilities need stability in their lives, and finding qualified staff is difficult due to low pay, few benefits and a high-stress work environment. The high turnover and lack of capable support is a major problem when it comes to providing services for this vulnerable and growing population.

According to a 2018 report, almost 32% of North Carolina’s direct support professionals left their positions in 2018. By comparison, the national average turnover across all industries was 3.7%. Many outgoing DSPs cite low pay and stress as reasons for quitting — in 2018, the average wage was $11.60 an hour in North Carolina. There is little training for these positions.

“You’re really in someone’s life. You can’t take any ol’ person and plug them in and make it work,” says Corye Dunn, the director of public policy for the nonprofit Disability Rights North Carolina. “There’s a measure of personal matching that has to happen. I was a direct support professional for years before doing this work. I was deeply embedded in people’s lives and involved in places where they were really vulnerable.”

In 2017, Disability Rights N.C. and four individuals filed a complaint – Samantha R. v. State of North Carolina – alleging that the state was failing to provide essential services to those with disabilities.

On Feb. 4, 2020, the N.C. Superior Court ruled that services in the state were inadequate enough that people with intellectual or developmental disabilities (I/DD) were effectively segregated from society. The court has yet to pass judgment on what the state government will have to do to remedy these issues.

“There’s still a lot of details to work out,” Dunn says.

One aspect of the complaint is the waitlist for the Innovations Waiver, which allocates state and federal money for lifelong intellectual or developmental disabilities services and therapies for families. More than 12,000 people are on its Registry of Unmet Needs. Some have been waiting for almost two decades. Fouts and Edwards were fortunate; they received one for Natalia when she was 8 years old after seven years of waiting.

But the Innovations Waiver is not a golden ticket for North Carolina families. There’s also a question of whether qualified professionals will be available to provide those promised services. And as North Carolina’s population grows, so does the number of people in need of these services. Between 2014 and 2024, the estimated job growth for direct support professionals — 21% — is expected to be three times the national average according to a recent report.

“We have a direct-support care crisis in this country,” says Jennifer Mahan, the director of public policy at the Autism Society of North Carolina. “We can’t open the floodgates and say, let’s pay for a service and then not recognize that the people delivering the service are an important component in making sure that people have a good quality of life.”

The Autism Society of North Carolina and other service providers like it hire direct support professionals and provide support to people and their families. Because Medicaid is a primary funder for these positions, the rate at which DSPs are paid is set by the state, and service providers cannot negotiate those rates.

An exception to this is if a family decides to become an employer of record. If they jump through the right hoops, they take on the responsibilities and liabilities of an employee who continues to work for a different organization like the Autism Society. This means that families like Natalia’s who became employers of record in September 2019 — can pay people like Danes significantly more.

“We get to hire our own staff. We don’t have to go through another agency,” Edwards says.

These higher rates are attractive to people like 27-year-old Hannah Miles. She drives between her client’s house in Pittsboro and her home in Rocky Mount a few times a week. It’s nearly an hour and a half each way. She isn’t reimbursed for gas.

She doesn’t get any benefits either, or paid days off, or a retirement package. But Miles isn’t alone – in North Carolina, only 64% of provider agencies provide their direct support professionals with paid time off. A little more than 60% offer any kind of health insurance, and 51% an employer-sponsored retirement plan.

“Every time we as a state vote to not expand Medicaid, it affects my job and people like me,” Miles says. “You can’t keep good workers. You can’t keep reliable, employable people if you’re not able to offer them any kind of benefits.”

But Miles has known the family in Pittsboro and their two teenagers with I/DD, Josh and Shea, for years. She loves the kids, she says. She protects them and teaches them and helps them when they’re down. They go to Special Olympics track practices in the spring, where she sees Danes and the Edwards-Fouts family.

But in the two years that she’s been working with the Pittsboro family directly, she says at least five others who have been with them have come and gone as well.

“It’s also hard on Josh and Shea,” Miles says. “They rely on that same person to pick them up from the bus every day from school, they rely on that same person to talk to you when you’ve had a hard day. When you’ve got people working for three to six months at a time and quit, it’s very hard for the boys to adjust.” 

It even matters that people help to tie shoelaces differently, Miles says. Routine and consistency are key to disability therapies. Little things that someone may do intuitively are skills that another may have spent a lot of time on.

“There’s a lot to my job that I think people either don’t realize or they just take for granted,” she says. “A lot of things that are just instinctual to a neurotypical person, it’s not the same way with someone with special needs. As much as it’s an enjoyable job, it can be very emotionally exhausting.”  

When Danes leaves around 7 that evening, it’s a quiet thing. Natalia is still sitting in the front room when she goes to say goodbye. Danes says that she’ll see her later in a low voice. She walks back through the kitchen, says goodbye to Edwards and Fouts, then slips through the door.

They clean up from dinner. Fouts gives Natalia her pills and brushes her teeth in the hallway outside of her room while their old toothless, clawless, half-deaf cat Charlie looks on. She mentions that Natalia had been unwilling to bathe for the last week, but that Danes had convinced her into it. Laughing, Fouts says that she should just transfer her whole bank account over to her.

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Natalia turns and walks into her room. There are pictures on the wall, clipped to string above her bed, and in frames on her side table and dresser. Her adoption from Russia, a recent family trip to Alaska, herself holding a stuffed animal and face illuminated by sunlight.  

Danes, meanwhile, heads back to her house near UNC-CH’s campus. It’s a little yellow house on a street near the Chapel Hill-Carrboro line. Later that night, she goes salsa dancing with her boyfriend in Raleigh. She wears a green, long-sleeved top and sparkly dance shoes.

They stay out until midnight, and laugh, and dance.

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