On the Other Side of Graduation: Waiting for Services

Many students with developmental disabilities are graduating from high school with no safety net in sight.

The transition out of high school for students with developmental disabilities is an enormous weight on many Oklahoma families.

Students with developmental disabilities may graduate with a high school diploma, but not all are ready for work or a life away from their parents. Some still may not be able to recognize their own names or know the difference between the men’s and women’s restrooms.

The burden of finding appropriate programs or care for these young adults is up to their parents. State funding is available through waivered services, though the funding is limited. Currently 5,500 people are on Oklahoma’s Developmental Disability Services office waiting list, with about 350 applying to be on the list each year. The average wait time for services is 14 years.

For families who added children to the list as infants or toddlers, the waivers are likely to come up in time for support around the time of high school graduation. But for those who found out about the waiting list when their children were older, it may be several years after high school graduation before they receive support.

No money exchanges hands between the state and the individuals receiving the waivers. Rather, individuals receive access to waivered services, which may include in-home care while parents are at work, assistance with daily living activities or help getting to work or appointments. Other individuals use the waivers to participate in programs such as Goodwill or A New Leaf, which provide job training for those with developmental disabilities.

“People talk about children with autism or children with developmental disabilities. Well, guess what? They grow up. Developmental disabilities don’t stop at 18,” said Wanda Felty, community leadership and advocacy coordinator with the University of Oklahoma’s Center for Learning and Leadership.

Felty manages the state waiting list, holding monthly meetings that operate both for information and support for parents navigating the system.

Felty has seen all sides of the issue, both as an advocate for people with disabilities and as the mother of a daughter with developmental disabilities. Her 31-year-old daughter, Kayla, who is also blind and nonverbal, was in the public school system from age 3 to 21. By the time Kayla graduated from high school, she was off the waiting list and eligible for waivers to receive support at home.

“I remember her senior year…The black hole of change was so scary to me,” she said. “The fear of not knowing what’s on the other side of that graduation was so big.”

And though it did take some time to find what would work best for Kayla, in-home support has worked well for the Felty family.

Kayla is cared for in the home while her mom and dad are at work. Caregivers work with her on personal hygiene and self-care, as well as helping her with the concept of choice. For instance, they work with her on choosing what she wants to wear each day. Beyond that, caregivers help her to have purposeful, meaningful days.

That might mean walking in the park, going to the mall and interacting with people (something Kayla would rather avoid) or stringing beads to make a necklace.

Kayla is able to have this type of care because of the state waivers, but for children who have aged out of the public school system and have not yet received their waivers, there is no safety net.

Transitioning from high school

Helping parents through this transition is something Lisa Turner does as executive director of TARC. It’s also something Turner is facing for her own daughters, ages 19 and 15, who have developmental disabilities.

Turner said as Oklahoma parents have been suddenly forced into the role of home educator because of the Covid-19 crisis, you can imagine what it might be like to suddenly become a home educator to a special needs student. The structure and routine of school is gone, as are the routines that help children with developmental disabilities regulate their emotions.

Graduation from high school is another enormous change in routine for these students.

“They’re essentially graduating to home,” Turner said. “The structure is gone, but also all the special services like physical therapy, occupational therapy, speech therapy, behavior intervention plans – those are also stripped away. It can definitely impact the emotional well being of a student.”

This transitional time is a point when families might notice destructive or erratic behavior, she said.

Families who are still on the waiting list for waivers have few options for caring for graduating seniors with developmental disabilities. Turner said some individuals will be left home alone, which can be a safety risk, while their parents work. Others are cared for by siblings. And in some families, a parent must quit his or her job, leaving the workforce to care for the child.

Many families fight to keep their children with developmental disabilities in school for as long as possible, which in Oklahoma is age 21. Parents work with their child’s IEP team to determine how long the child will be able to stay in school. Because there are no official transitional services for young adults with developmental disabilities, Turner said staying in school is a way to postpone the inevitable, while also building skills some children will be able to use in vocational rehabilitation programs.

Students who are ready for work programs have options including A New Leaf in Broken Arrow, which provides horticultural-related job training for adults with developmental disabilities. A New Leaf, which began in 1979, serves more than 300 people with special needs. But entering into the program is costly. Most young adults who enter the program, and similar local job-training programs, do so using state waivers.

Those who were expecting more funding would be allocated to waivered services through Developmental Disability Services in this year’s state budget may be in for a longer wait. Felty and others don’t expect extra funding this year because of budget concerns due to the economic fallout from coronavirus.

This is Part II of a 2-part series on Developmental Disabilities Services in OK. Read the first part, “Lack of Funding Leaves Vulnerable Families Waiting,” here.