Laura Windom’s 26-year-old brother Jonathan relies on her as his guardian after both their parents died over the last year. Jonathan is autistic, nonverbal and also struggles with self-harming outbursts.

Jonathan bounced around from various care facilities for people with developmental disabilities starting in 2020, until his care needs became too much to handle for providers, Windom said. The facility he was in last August told Windom she had 30 days to come up with another solution before he had to move. 

Out of options, Windom built a tiny house for her brother in the backyard of her Ponca City home last fall with its own gate and porta-potty.

Jonathan’s tiny home in his sister’s backyard in Ponca City. Provided

“We’re out here surviving,” she said. “We’re just doing our best.” 

Jonathan has been on the Developmental Disability Services waitlist for several years. The Oklahoma Department of Human Services oversees the list to get individuals approved for waivers that provide funding for an array of helpful services beyond what regular Medicaid coverage offers, like employment support, home modifications and physical, occupational or speech therapy. 

Windom is hopeful the waiver will allow for more options for Jonathan’s care if his application is approved, but she worries that the right options still won’t be available. For individuals with special medical or behavioral needs, it can be difficult to find appropriate care even with a waiver. In Kay County, where Windom lives, there are only a handful of local providers available. 

Staffing shortages could pose a problem as the state aims to eliminate the roughly 4,663-person disability services waiting list over the next two years. Even though lawmakers approved funding for a historic 25% rate increase for direct care staff this year, it’s only about half of what is needed to offer competitive pay to recruit and retain workers, providers say. 

Oklahoma providers have faced a staffing crisis for years and struggled to provide care to the 5,600 people who are already receiving waiver services. The coronavirus pandemic and record-high inflation have made the shortage of direct care staff even more pronounced. 

Samantha Galloway, interim director of DHS, said the agency is aware of people with developmental disabilities who can’t get the level of services they need because of staffing shortages. 

“This job is much more challenging than serving in a restaurant, and this rate reimbursement doesn’t even become competitive to that,” said Elijah Blankenship, chief operating officer for the service provider Gatesway Foundation. “For me, it speaks to the long-term issue that Oklahoma has had of not prioritizing people with disabilities.” 

Local fast food restaurants are advertising $14-per-hour jobs while Gatesway can’t offer rates any higher than what the state has agreed to fund through Medicaid, Blankenship said. Care staff currently can make as little as $9 per hour before the rate increase, making it hard to attract workers for jobs that can sometimes be physically intense. 

Gatesway runs residential and employment services in eastern Oklahoma. The agency has about 132 direct care staff for 130 residential clients. Blankenship said he could easily hire 50 more staff members to work with the clients he already serves. The agency put in requests to the state government for a share of federal coronavirus relief money to better pay workers, but hasn’t heard back on its proposals

DHS said it doesn’t have data systems in place to know exactly how many direct care staff there currently are in the state and how many more would be needed to adequately provide services to those coming off the waiting list.

This year, the Legislature gave about $32 million in additional dollars to DHS to fund services for people on the 13-year waiting list and increase pay rates for direct care staff. Those funds are paired with existing DHS dollars and federal money, totaling $175 million, according to DHS. The rate increase begins Oct. 1 and will raise hourly wages to anywhere from $11 to $13 per hour. 

The new injection of funding is the largest push Oklahoma has made to clear the waiting list. Providers were thrilled with the increase, but say more will likely be needed in the future.

Pat Ownbey, director of Oklahoma Community-Based Providers, which lobbies on behalf of disability service agencies, said the state has been behind the curve on competitive pay for years. If the 25% increase hadn’t been approved, the state could have lost multiple providers, he said.

While not all of the people on the waiting list will actually be approved for disability services through Medicaid, providers still expect to need to double their staffing levels to care for waitlist clients. But with long hours and low pay, the field has high turnover rates. It’s also difficult to recruit and train new workers, providers say. 

“We are always hiring,” said Shannon Holcomb, director of Oklahoma’s home and employment services for Bios, headquartered in Sapulpa. The agency, which roughly serves about 300 people, always has a waiting list for its services.

The rate increase was a sigh of relief for Holcomb, who said managing staffing levels would have been “catastrophic” if the new rates hadn’t been approved. Holcomb said she hopes legislators see the rate increase as just the first step in providing services to more individuals. 

“As we look to serve more people, we’ve got to make sure that there’s a lure to get people into this field,” Holcomb said. “We’ve got to have people constantly looking and making sure that wages are competitive with retail and fast food. If they’re not, that’s a problem.” 

DHS was able to provide a temporary 20% rate reimbursement during the pandemic to address spiking overtime costs providers were facing while it waited for the Legislature to approve the permanent 25% rate increase, Galloway said. When they learned about the temporary rate increase, some providers were able to rehire direct care staff that had recently quit. That’s a good sign for future hiring success with the permanent rate increase, Galloway said, and she doesn’t expect this to be the last rate hike. 

DHS is encouraging providers to do what they can to bolster staffing in preparation for the waitlist being eliminated, and the agency is also working with higher education institutions to recruit physical therapists, speech therapists, psychologists and occupational therapists. 

“Eliminating the waiting list is going to be the greatest advancement in this system since it was created. But it’s also going to stress the system the most it’s ever been stressed,” Galloway said.

Oklahoma’s Department of Human Services plans to process the waiver applications of thousands of individuals through summer 2024 by splitting applicants up into cohorts. Provided

The state’s plan to process 13 years worth of waiver applications by summer 2024 ramps up in January, when the state will more than double the number of applications it processes each quarter. DHS contracted with health care group Liberty to call families on the waitlist to learn about their needs, and the agency used those assessments to put together the financial projections it presented to the Legislature earlier this year. 

The agency doesn’t currently plan to release aggregate data on what disabilities are most prevalent or what services are needed by those on the waitlist because of time and resource constraints. Instead, the agency has given providers a map of where waitlisted individuals are located and if they are children or adults — information providers have frequently requested, Galloway said. But some providers were hoping for more details.

“It feels like we don’t have all the information,” said Mary Ogle, chief executive officer for A New Leaf, a residential and employment provider in eastern Oklahoma. “Aggregate data would be very helpful.” 

Most people who receive waiver services from the state are adults who can get up to $28,000 a year for direct care and other services while living at home. It’s cheaper for the state than paying uncapped costs for people living in residential facilities. 

Wanda Felty, who coordinates a meeting for families on the waiting list and has a daughter receiving services, said the in-home waiver still relies heavily on families to provide care, even though professionals come to help. Even after the new funding, the system still needs to change, she said. 

“We haven’t built capacity,” Felty said. “I am so pleased they gave this historical money, but what happens when the family goes through all of this and still can’t find the help they need? Then we have hurt people.” 

Families with loved ones that have higher medical or behavioral needs are worried there won’t be appropriate care options for them as they get off the waitlist. 

Amber Boyer’s 14-year-old son Davin is autistic and speech-delayed. Davin receives some speech therapy through his public school in Newkirk, but the school has struggled to hire professionals in the rural area that can provide Davin the services he needs, Boyer said. 

By the third grade, Boyer said Davin had some maladaptive and aggressive behaviors. She’s replaced the windshield of her car twice and has erected an 8-foot metal fence around her house so her son doesn’t wander off. There are two different locks on her front and back doors each. Davin has severe headaches but must wait months until he can be seen at one of the few hospitals in the state that can do sedation for patients to get an MRI. 

“Until you actually live this life and understand everything it takes to get through the day and through the week and the month and the year, you don’t really know,” she said.

Davin’s high needs have made it difficult to find providers that are willing to work with him. Boyer, a single mom who works full time and has another child, said much of Davin’s care falls to her. Having a support system and more assistance navigating services would help, she said.

Davin has been on the disability services waitlist for about a decade. Boyer said she is looking forward to the state offering services soon, but she worries about where the services will be located and whether providers will be capable of taking care of her son. 

“Once you hit a limit where you are more severe, it’s like there’s not anybody that can handle those kinds of situations,” Boyer said. 

DHS is currently studying provider rates and has plans to begin a study on how Oklahoma’s services for those with intellectual or developmental disabilities compare nationally. Officials said lawmakers are aware that direct care staff will likely need another rate increase in the near future. 

“It’s important for families to know that we’re sincere about people getting services,” Galloway said. “I want families to trust us.”