Wait List Reaches All-Time High for Developmental Disabilities Services

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Home health nurse Rita Nuss reads a book to 9-year-old Josiah Melton, who has a number of chromosomal disorders and is on the Developmental Disability Services waiver waiting list.

Clifton Adcock / Oklahoma Watch

Home health nurse Rita Nuss reads a book to 9-year-old Josiah Melton, who has a number of chromosomal disorders and is on the Developmental Disability Services waiver waiting list.

Oklahoma Watch is reporting a year-long series on mental-health issues in Oklahoma. The project is enabled by a grant from the Anne and Henry Zarrow Foundation and the Zarrow Families Foundation.

Oklahoma Watch is reporting a year-long series on mental-health issues in Oklahoma. The project is enabled by a grant from the Anne and Henry Zarrow Foundation and the Zarrow Families Foundation.

After decreasing last year, the waiting list for a state program that provides services to Oklahomans with developmental and intellectual disabilities has grown again, to the highest level ever.

As of Oct. 15, the wait time for those seeking state-paid services for their developmental disabilities was nearly a decade, according to Oklahoma Department of Human Services figures. The number of people on the waiting list grew from 6,992 in July 2014 to 7,239 in October this year.

The list could grow longer as increasing numbers of people apply for services and the state looks at more cuts in funding for programs because of an expected budget shortfall next year.

“When we got on the waiting list, they said it would be several years, so I knew going into it,” said Broken Arrow resident Olivia Morgan, whose son Josiah Melton, 9, has been on the waiting list since April 2008. Josiah is non-verbal and has chromosomal disorders. “Hopefully, we’re getting close, because we’re seven years in.”

Oklahoma uses state and federal Medicaid funds to pay for various services for the developmentally and intellectually disabled in provider-run community homes or their family’s home. Those needing services have conditions such as autism, cerebral palsy, Down Syndrome, brain injuries and intellectual disabilities. About half are children. Services can be long-term case management, home health aides, personal or medical care, therapy, vocational training or retrofitting of homes and vehicles for the disabled.

There have been some efforts during the past decade to lower the wait time. The biggest occurred when the state Legislature appropriated a total of $3 million over the last three fiscal years to address the issue.

The additional funding seemed to work. The number of people on the list dropped slightly, from 7,064 in August 2013 to 6,992 in July 2014, according to records from the DHS developmental disabilities services division. However, the Legislature cut off the additional money for fiscal 2016 because of a budget crunch. A more severe budget shortfall is projected for fiscal 2017, so hopes are diminishing that the waiting list can be reduced again, said DHS spokeswoman Sheree Powell.

Interactive table by Nate Robson.

“It’s looking less likely,” Powell said. “None of us can truly predict what’s going to happen, but every month that we get these revenue reports back, it’s not looking good.”

A total of 5,610 Oklahomans were receiving services through the program in June.

The state pays for services through a waiver granted by the federal government that allows Oklahoma to use Medicaid funds to cover treatment of the developmentally disabled in home settings instead of large institutions. The waivers stemmed from federal court rulings in the late 1980s that led to the closure of Hissom Memorial Center in Sand Springs.

In 2012, Oklahoma decided to close its two remaining institutions for people with developmental disabilities and switch to a total community-based approach. Gov. Mary Fallin formed a panel in 2013 to reduce the waiting list.

In March, the panel issued recommendations to improve services, including finding a way to prioritize those on the list, which is now basically first-come, first-serve.

Fallin has since created two new groups. The current panel is charged with developing policy proposals, and an inter-agency council composed of government officials and cabinet members is to implement the proposals.

Wanda Felty, who served on Fallin’s panel and is an advocate for developmental disabilities services, said that for every $1 million put toward the waiting list, about 300 people were taken off.

But only around half of those actually were given waiver services, Felty said. The rest were removed after the department was unable to make contact with them.

“If you’ve been on the waiting list for nine years and come to the top, how many times have you moved in nine years? Many of them are at the poverty level, and change phone numbers several times,” Felty said. “(DHS) does a good effort to try and find them, but after so many attempts, they close the case as not eligible.”

At the same time, the pace of applications has increased as more people learned of the waiting list on the Internet and through social media, Felty said. With that trend, and the loss of the $1 million in annual funding, the number of people on the waiting list has grown to a record high.

Powell, the DHS spokeswoman, said while most of those on the list are also covered by Medicaid, the waiting-list program covers additional services that are often needed by families with adult children.

“Obviously, for some families, even regular Medicaid isn’t enough. It pays the medical bills, but not the direct-care staff members,” Powell said. “While families are working trying to make a living, who is going to care for their adult son or daughter at home?”

In addition, the state’s Medicaid program cut provider rates this year by 3 percent to 5 percent, resulting in cuts to some services and to provider worker pay, and causing some providers to pull Out of the market, Powell and Felty said.

“This has been extremely hard. We’ve had several provider agencies give notice. They just went belly-up,” Powell said, adding that DHS has tried to work with the providers to lessen the blow.

Morgan said she, too, has seen a reduction in some of the services her son Josiah receives through Medicaid, such as the amount of time he is able to attend certain therapies and longer approval times for items like wheelchairs. Morgan said when her son finally gets off the waiting list, one of the first things she hopes to obtain is a wheelchair lift for her van.

“We try not to take his big wheelchair because it’s very heavy, and I’m expecting another child,” Morgan said.

She hopes that the eventual delivery of services will bring stability.

“Better to wait and get what you need for your family member than the stress of trying to figure out how you’re going to do this without it, without the equipment you need, or on your own,” Morgan said. “You get used to it, being a wait.”

  • Bill Bynum

    Still asking “Why?”

  • Betty Simmons

    Very informative.

  • Laughing Hombre

    Its amazing our governor is looking for ways to fix all these issues with menatal illness when all we had to do was expand medicaid and instantly give medical and mental health coverage to every single oklahoman making below 30ish K a year. Oh with 90% of it payed for by the feds…. But it would be to terrible to go along with Obamacare on anything..so… she makes a political decision and allows these problems to continue and then acts like its not her fault. Im not supporting or endosing obamacare in any way, but if you can suddenly get full healthcare 90% covered for your most needing and vulnerable constituents OR make a political “stance”, just what is in the best interest of oklahomans?

  • X-Man Mom

    Unless you are a caretaker, directly, or indirectly involved with someone who is special needs,,, they just don’t get it! That’s the “Why”,, they just don’t get it! Lets form an advisory committee for the oversight committee who looks over the governing board who looks over,,, ohh Pft! I realize funding is always the hot topic, but it just seems to me that certain funding shouldn’t take as big of a hit.

    I’m fortunate that my 23 yr old son was finally able to get into a vocational program,, wait list is not even related to white list. Now he has a productive life with friends, coworkers and staff. But for almost 4 years after graduation Mon – Fri he had to be home alone and stayed in his room watching TV or sleeping. Nothing we could do about that and as parent we felt like crap.

  • Oklahoma Watch

    X-Man Mom, it sounds like your persistence as a parent paid off. Our hats off to you.

  • X-Man Mom

    In part me, but the one who deserves most of the credit in getting it done is a staff member at the Gatesway Foundation.

    I grew up listening to my mother balk at Dr Spock’s baby handbook. As a parent of a special needs child, someone should have told us, ingrained, seared in our brains the importance of the wait lists and staying on top of that. You can’t fully comprehend until your faced with a challenge or see another go through the red tape struggles.