Erin Taylor with a portrait of her son
Erin Taylor, of Oklahoma City, shows a portrait of her son, Henry Weathers, now 15 years old. Weathers was born with a congenital heart condition that has required multiple surgeries and led to an intellectual disability. Credit: Jeff Raymond / Epic Text Books
An ongoing series that explores how Oklahoma’s severe human-needs issues affect the lives of children.

As the number of people waiting for developmental disabilities services has reached an all-time high, the Oklahoma Department of Human Services is considering abandoning the first-come, first-served approach to the developmental disabilities services waiting list.

Instead, it would prioritize the list according to need, meaning families who have waited for help for years could be moved back in line while others are shifted to the front.

But how that system would work, and whether it would be fair and effective, is unclear. DHS officials said the change will take years to implement. The agency has made relatively little progress during the past two years.

In the meantime, the waiting list for government-paid services for those with intellectual and developmental disabilities continues to grow, hitting a record 7,560 this year.

In 2015, a state panel formed by Gov. Mary Fallin recommended ways to improve services for developmentally disabled people and proposed ranking those on the waiting list according to their situation and need.

Personnel changes at DHS and the agency’s attention to other matters, however, have delayed changing the first-come, first-served approach, a DHS official said.

Under the current system, individuals on the waiting list receive a Medicaid “waiver” for services as soon as their name reaches the top of the list. The waiver allows Oklahoma to use Medicaid funds to pay for treatment of the disabled in families’ homes or community homes instead of large institutions.

The approach has left more than 1,000 families waiting for a decade or more for services, which can include therapy, vocational training, home health aides and long-term case management. Those on the list have conditions such as autism, cerebral palsy, Down Syndrome, brain injuries and intellectual disabilities. About half are children.

The state panel recommended creating ranking criteria that include factors such as the applicant’s condition, age and risk of institutionalization, and the age and medical condition of the caregiver.

Currently, applicants who have extreme needs can receive emergency waivers.

An Expanding List

Over time, dwindling state funding has caused the waiting list to swell. An influx of state funding in 2014 allowed DHS to shorten the list a bit, but as money for developmental disabilities services has become scarcer, the waiting list has become a scroll.

After hitting a peak of about $238 million in fiscal 2014, funding for developmental disabilities services dropped to about $224 million in 2016. During the same time period, the waiting list grew from 6,980 to 7,405.

“I think that the waiver is very important to most individuals,” said Marie Moore, DHS’s interim director for developmental disabilities services. “It allows them to be more independent, and it allows them to be in the community more so than they would without that service.”

The funding issue could become more critical should the Medicaid program be cut as part of a congressional and White House effort to repeal and replace the Affordable Care Act.

Moore said any Medicaid reductions could threaten individuals’ eligibility for services or result in elimination of some services.

“Our concern is any type of reduction to Medicaid could threaten the safety, health and welfare of our clients,” Moore said.

Parents’ Perspective

Since 2010, Erin Taylor’s 15-year-old son, Henry Weathers, has been on the disabilities waiting list. Weathers was born with a congenital heart condition that required multiple heart surgeries and led to an intellectual disability.

When Taylor, an advocacy and training coordinator for the Oklahoma Developmental Disabilities Council, a state advocacy agency, added her son’s name to the list, she wasn’t sure of what services he would need down the line.

“I didn’t know what I wanted, but I knew I didn’t want him to live in an institution,” she said.

Over time, she’s gotten a clearer picture of what she’d like for her son. She expects him to need case management – someone who can coordinate his medical and vocational needs and check on him several times a day.

“I want Henry to live in a home and a community of his choice,” said Taylor, of Oklahoma City. “I want his days to be safe, but I also want them to be meaningful and enjoyable for him.”

Erin Taylor with paperwork
Erin Taylor, of Oklahoma City, thumbs through paperwork she had to fill out for her son to qualify for Medicaid and be placed on the state waiting list for individualized services.

Moore said about 1,200 of the waiver applicants, or 16 percent, have been on the waiting list for 10 years. By the time some applicants’ names reach the top of the list, their contact information has changed, and DHS employees aren’t able to reach them, she said.

Wanda Felty’s 28-year-old daughter, Kayla White, spent time on the waiting list before becoming one of the first in the state to receive care and independence-skills training at home through the waiver. A habilitation training specialist works with Kayla six days a week to develop skills ranging from personal care to daily living.

“The bottom line is, without this support I would not be able to work, and I’d be home with Kayla,” said Felty, of Oklahoma City, an advocate who served on the waiting-list recommendation panel. “Kayla would not be gaining in independence. Where she is now and where she started from is completely different.”

Why the List Grew

Ann Trudgeon, executive director of the Developmental Disabilities Council, said advocates like herself bear some responsibility for the length of the list.

“I feel like parents would come to us and say, ‘I have child with a disability,’ and the first thing we’d do is say, ‘Get on the waiting list,’” she said.

Another reason for the lengthy list is that some parents sign up before their child needs the services, figuring the need will arise years later, when their number on the list finally comes up. When they reach the top of the list, some may decline services, only to sign up again, Trudgeon said.

“What that means is we’re not meeting people where they are,” Trudgeon said.

Since the state panel recommended revamping the list, Moore, of the DHS, said the agency has been “in discovery mode,” examining how other states prioritize program applicants by need. Along with a new system would come training personnel to assess applicants and the new assessment system itself.

“It would evaluate the applicant’s situation,” Moore said. “It would take into consideration who is providing support for that individual now … as well as the health of the individual,” Moore said.

DHS has looked at several states, including Missouri, New Jersey, Pennsylvania and Utah, to determine how they run their waiting lists and what criteria go into prioritization assessments, Moore said. Missouri, for instance, changed its requirements so that fewer people were eligible for the disabilities services.

“We began with their information but moved in a different direction,” Moore said.

New Jersey’s waiting list is organized into two categories – a priority list and a general list. The state places applicants on the priority list if they meet certain criteria, such as being at risk for abuse or neglect, or both of their parents are age 55 or older.

Other states use more categories to prioritize their wait list applicants. Florida’s wait list has seven categories that rank their needs. The highest level is a crisis due to homelessness, being a danger to themselves and others, or losing their caregiver. The lowest category is made up of clients under age 21 who, in addition to meeting other standards, aren’t in crisis or the child welfare system and have a caregiver.

When asked why DHS hasn’t yet overhauled its wait list, Moore, said, “We’ve had quite a bit of personnel changes, and the prior director had a focus on closing down the facilities, and she left 18 months ago. I don’t think that it was something she didn’t want to do. It’s just that we had other needs. We’re just working on it as we get information.”

Once DHS sets a direction, it will spend time working with families and other stakeholders to develop a process that is believed to be fair, she said. Then it will take at least three years to establish the new system.

Would It Be Fair?

Trudgeon, of the disabilities council, supports a prioritized wait list, describing it as a “triage” for applicants. She pictures a system with multiple categories based on need, ranked 1 to 5 with 1 the greatest need. It would require regular assessment of applicants to reflect their changing situations, she said.

For families on the waiting list, the idea of a new priority system can bring up complicated feelings. What if someone who had been on the list for 10 years is shuffled toward the bottom because DHS determines their need is a low priority? What if DHS fails to connect families with other available services while they’re waiting?

“First of all, when Kayla was on the waiting list, I felt like no one knew about the waiting list and no one cared about it, so I put myself back in that place,” Felty said. “I’d think Kayla would never get services and we’d never get help, and then the hope would go away. The biggest (concern) for me is families, for them to lose hope.”

Both Felty and Trudgeon expressed concerns that under a needs-based waiting list, some applicants will linger near the bottom of the list.

“How do you tell someone who has been on the list for seven years that someone who has been on the list for two years is ahead of them?” Trudgeon said. “That’s the downside of that system. It is going to look unfair, and I’d like to think that my fellow Oklahomans understand who most needs support, but I think it will be a challenge.”

Reach Mollie Bryant at or (405) 990-0988. Follow @MollieEBryant on Twitter.

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