Lack of Funding Leaves Vulnerable Families Waiting

When Christi Newendorp and her family moved to Oklahoma, she knew she would need help caring for her two sons who both have autism.

Newendorp called the Developmental Disability Services office in Oklahoma City and was told the boys, ages 7 and 4 at the time, would be put on a waiting list for services.

Thirteen years later, Evan and Schuyler are still waiting.

At ages 19 and 17, the boys need the help more than ever. Once they graduate from the special education program at Jenks High School, they will need assistance getting to work, running basic errands or possibly care at home.

Christi and her husband, Eric, both work full time – she as a special education teacher with Jenks Public Schools and Eric for the Tulsa Drillers. Unlike many families, as the boys have gotten older, things haven’t gotten easier for the family.

Christi can’t do simple things like get a haircut or go to the grocery store without lining up someone – a qualified someone – to watch the boys. While many parents look forward to their kids’ teen years when they can run an errand or go out to dinner without worrying about hiring a babysitter, it’s something the Newendorps will never experience.

And it’s exactly the kind of support Developmental Disability Services funding could have been helping with all these years.

Currently 5,500 people are on the waiting list for services in Oklahoma, with about 350 applying to be on the list each year. Newendorp said she hopes people can see past the number to realize that’s 5,500 real people with real families who have been waiting, in many cases, a really long time.

Why the long wait?

Lisa Turner, executive director of TARC, has helped many families deal with the complexities of care for those with special needs.

After receiving a diagnosis for a physical or developmental disability, families often turn to TARC for help. Turner said many families don’t know about the funding – though limited – available to help those with special needs. So the first thing she does is help get them on the waiting list. While families wait, TARC works to connect them with services. And these aren’t just services for children. TARC works with people through the lifespan, from birth to seniors.

“Right now it’s about a 14-year wait, which is ridiculous,” Turner said. “Some families hear that it’s going to be 14 years and they decide to pass. But we tell them you never know what’s down the road.”

So why is the wait so long? It all comes down to funding.

Years of flat state budgets have meant there’s no extra money to support programs like the waiver program through the Department of Disability Services (DDS).

“It’s like every year Oklahoma shrugs and says ‘sorry we don’t have the money for this,’” Newendorp said.

For the last two years, the Oklahoma Legislature has approved $2 million to DDS to use for granting waivers for access to services. That amount moves approximately 100 individuals off the wait list each year, which doesn’t even make up for the 350 being added each year

In the past DHS has not requested funding, but this year, Oklahoma’s new DHS director, Justin Brown, requested $16.2 million – a big jump from years past – for the program. That amount would move approximately 1,000 people off the list.

Though the $16.2 million is off the table, Gov. Stitt has proposed $6.2 million for DDS waivers in his state budget.

How do waivers help?

In-home care or group-home care with individualized assistance hasn’t always been the norm in Oklahoma. The move to grant waivers, which created such a big wait list, came as institutional care began to be phased out in the 1980s and 1990s. The biggest facility impacting the Tulsa area was the closure of Hissom Memorial Center, a state-run institution for individuals with developmental disabilities.

When Hissom was built in 1963, there were little to no community services for people with developmental disabilities. Many parents were encouraged to send their children there to live out their adult lives.

Hissom officially closed in 1994, leaving hundreds of residents of those facilities to go back into the community. Some returned to live with their families and others moved to group home facilities, but nearly all required some level of assistance.

“When they closed places like Hissom, there were no agencies providing those services to support someone living in a home or group home,” Turner said. “Some needs were minor, like needing help to manage money and write checks. But others need assistance with everything from toileting to getting dressed and brushing teeth.”

The state’s program to provide individual access to services – to develop a plan with case workers and then provide staff to deliver those services – was a result of the shift from institutional care to individualized, community care.

Today, once a family’s wait is up, a case worker determines the scope of services and hours per week needed. For some, it’s as little at 10 hours a week, but can be as much as 30 or 40 hours for others. No money exchanges hands between the state and the individuals. Rather, individuals receive access to waivered services, which may include in-home care, assistance with daily living activities like laundry and meal preparation, or help getting to and from appointments or work.

What are the economic costs?

Oklahoma is not alone in having such a wait list. The impact of institutional closings was felt across the country. Some neighboring states, including Texas, have waiting lists as long or longer than Oklahoma. But some states have solved the issue by appropriating more money into these special programs.

While advocates work to bring more money to these services, in the meantime, the economic cost of having individuals on the waiting list may be greater to the state than providing services, Tucker said.

That’s because families are often faced with having to quit a job to help care for a family member with disabilities.

“People quitting their jobs to become caretakers is a problem,” Tucker said. “If you don’t have the resources to hire someone, you’re forced to make the decision.”

It’s an issue the Newendorps are facing as they edge closer to moving into the waiver program and off the list. Their son, Evan, will likely graduate in May, and since he will not have the support and structure of the school day, he will require more assistance than Eric and Christi can provide.

“So who quits? Me? If I quit, I lose my salary, my teacher’s retirement,” Christi said. “There are a lot of parents who are going to have to drop out of the workforce because they have to take care of their kids. The state is just not aware or not acting with any kind of urgency to this problem.”

But there’s certainly a sense of urgency for the Newendorps.

“He’s being kicked out of high school, getting pushed off the services cliff. But once school services are done, how are you going to catch them? Where’s the soft landing. It’s like `It’s time to graduate and move you out to adult services,’” she said. “But those services don’t exist. It’s only a waiting list.”

Newendorp hopes Evan will be getting off the waiting list soon. But until then, she has to have a plan for him, including a complete daily schedule.

“It’s like having children who never grow up. We have to think about every minute of every hour of their days,” she said. “We go straight from work to caring for our kids. We need help.”

*In May, Tulsa Kids will further explore the complexities of what happens to kids with developmental disabilities once they’ve aged out of the school system.