Waiting list puts life on hold for those with developmental disabilities

After nearly two years of the COVID-19 pandemic, the whole world now knows what it is like to put life on hold. It is a similar feeling for my daughter Madison and the 5,800 Oklahoma families who are waiting an average of 13 years to receive developmental disability services (DDS) through Medicaid waivers managed by the Department of Human Services.

While there seems to be an end in sight for the pandemic, I can’t say the same for the DDS waiting list after a recent state government report shows not much has changed in the last eight years even with the legislature’s $9 million investment to help serve Oklahomans with intellectual and developmental disabilities.

Madison is a 19-year-old with Down syndrome who has been waiting eight years to receive support and services that will help her live a more independent life. Like many others, we only learned about the waiting list for these services by word of mouth from other families who are connected through disability-related organizations.

Our story is different than some because Madison does not require the same level of support as many Oklahomans with disabilities. She hopes to attend RiverHawks Scholars, a college program designed for students with developmental disabilities at Northeastern State University.

Madison could even work with the help of a job coach provided through developmental disabilities services. The supports are a means of survival for many, but for Madison it is a means to thrive as a contributing member of our community. At our state’s current pace of providing services, she’s got at least five more years to wait for her life to truly begin.

Look at what pandemic life has done to us in less than two years. Now imagine compromising the way you live for 13 years. That more-than-a-decade wait takes an incredible toll on Oklahomans with disabilities and their families who fill in the gap while they wait for services that support their loved one’s full inclusion and participation in the community.

Whether these services are used to help someone with disabilities get out of bed or help them get a job, the bigger picture is that these waivers are helping a group of Oklahomans realize their full potential. It is something we do for many other marginalized groups without a 13-year wait.

There may not be a lot of parents making noise about this waiting list report, but I would offer that it is not because it does not matter to them. It is because many are too busy keeping up with the daily living needs of their loved one with disabilities. That is why it is important for those of us who can to speak up for those who will never have time to read the full 66-page waiting list report, go to the State Capitol or call their legislator to ask about the follow up.

Our state is long overdue in addressing the wait time for services and supports for Oklahomans with developmental disabilities. This report is a wake-up call for all of us, families, legislators and DHS, to work on solutions to help better serve our disability community that has been seriously impacted by the pandemic. With relief funds available to make real progress right now, why are Madison and nearly 6,000 more Oklahomans with developmental disabilities still waiting?

Dena Fabian-Moore is a Muskogee resident and parent of a child with Down syndrome.

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