SOAR has sat down with multiple providers, self-advocates, caregivers, and other stakeholders in the I/DD ecosystem. Across the ecosystem, SOAR’s team has experienced the disjointed service roadmap, the general confusion, and the hunger for clear answers that characterize the experience of those who are on or who interact with the waitlist for services. Feelings of discouragement and isolation are rampant within the caregiving community, especially given the workforce crisis that exists in the provider industry due to underfunded state reimbursement rates to pay for caregivers. Our first article in the Social Impact Perspective series highlights this challenge in SOAR’s home state, Oklahoma.

We are releasing this on March 1 – the first day of Developmental Disabilities Awareness Month – as a cry for the state of Oklahoma to consider the I/DD community in its pursuit to be a Top Ten state. See the university research project on which this article is based here.

The Waiting List

Oklahoma Governor Stitt is known for making the call for Oklahoma to become a “Top Ten” state in a variety of areas. The vision of being Top Ten is thrilling – who wouldn’t want to be in a state known for being one of the top ten places to live in the United States? The idea brings up images of a thriving state filled with Oklahomans, excited about their home and confident in the place they live. Chasing this ideal is a worthy goal – and one SOAR Partners wants to ensure is inclusive of Oklahomans with intellectual and developmental disabilities (I/DD). It is vital that the voice of Oklahomans with I/DD and the voice of their caregivers is included in the narrative of Top Ten.

The waitlist for services for individuals with I/DD (classified as individuals with IQ below 70), which exists as a metaphorical holding room for those who have applied for State services and are waiting on funding for said services, has recently become an explosive topic across the state of Oklahoma. This list, which is currently over 5400 people long, has existed for over 15 years; only recently, however, is it beginning to gain the attention of the larger Oklahoma community.

While the number of people on the waitlist is frustratingly large – larger even than many towns –the real priority should not be on shuffling people off the list, but on identifying how to best match the services required by each person on the waitlist to service providers across the state. OKDHS, the department responsible for delivering services to the extremely vulnerable Oklahomans on the waitlist, has begun investigations to determine exactly how much funding will be needed to reduce the waitlist. Essential to answering the funding question is thoroughly grasping the magnitude of the direct care provider staffing crisis.

Frustrations have been at an all-time high for self-advocates and caregivers, as the questions most of them have been asking for years make their way into popular discussions and they continue to await the solutions – solutions that some have them have been waiting on for 13 years or more.

Jane*, a resident at one of Oklahoma’s Intermediate Care Facilities, told SOAR Partners, “Waiting for services is really difficult. I would like to live more independently, but I have to wait until I’m approved for a group home … I want to make more friends and be more active in the community. I don’t like the term disabled and when there are so many ways the state of Oklahoma could help me become more abled, I get frustrated.”

Finding Solutions

In searching for solutions for this community, it has become apparent that one of the greatest barriers providers and problem-solvers face is a lack of consolidated research and information. This realization is what prompted us to commission a research project with Oral Roberts University’s College of Business – Graduate Competitive Business Intelligence Class. Working with these students, we sought to understand the state of the Oklahoma waitlist and available I/DD services, as compared to other states. Our real questions: How does Oklahoma currently rank? What does it look like for us to be part of the Top Ten states that lead the way in caring for an often voiceless sector of society, one which has been especially hard hit during the pandemic?

Oklahoma ranked very low on the team’s findings for its care for individuals with I/DD, with a waiting list that is the seventh largest in the nation per capita (stated differently – Oklahoma ranked 44th in the nation for providing individuals with services). This surprised no one – only confirming what individuals with I/DD and their caregivers already experience.

One such caregiver, Ginger Hendricks of Tulsa, OK, shared with SOAR about her own families’ experience with Oklahoma services for her son, Griffin. Griffin was inexplicably removed from the waitlist after waiting for over 10 years. Ginger placed him back on the waitlist in 2017, knowing that this change means he may have to wait until 2030 to receive any kind of services, when he was originally expected to receive those services in 2020. “What I am frustrated about as a Mother, Caregiver, and Taxpayer is why is there such a long wait (10+ years) especially as other states do not even have a wait list? …  State representatives, please consider when in session how the decisions you make this session will make a huge impact, positive or negative, on your constituents and their futures.”

Noting their findings, ORU’s team committed itself to asking the right questions to uncover solutions. They wanted to understand which states had been successful in caring for this sector of the population, which is often looked over and rendered voiceless within their communities and states. The team’s project presented the “best in class” states and provided a reflection on what inputs and approaches have helped each top state succeed.

The research provided by ORU’s team highlights the possibilities for technology to change the experience of individuals on the waitlist and their families. The right solutions can increase independence, community engagement, and workforce access, among many other things. Even amongst the very real frustrations that exist regarding the waitlist for services, SOAR applauds OKDHS for its research and adoption of enabling technologies as a solution to improve the lives of individuals with I/DD. If these technologies can be rolled out throughout the state, a great many more individuals may be able to be served in a way that is non-intrusive, person-centered, and efficient. (To read more about OKDHS’s enabling technologies and remote supports program, click here.)

Reimagining

The ORU student research confirms that, when it comes to I/DD services, Oklahoma is indeed a Top Ten state, but only for its waitlist size. At SOAR, we confidently believe that Oklahoma can and must do better, and we want to join with others across the State to be part of that solution. We are committed to reimagining I/DD services in order to see Oklahoma become a Top Ten state for support of members of the I/DD community – members of our community.

This looks like advocating for more funding for the I/DD community. It looks like adoption of innovative technologies that can disrupt our current understanding of how to deliver services. It looks like a marketplace exchange where self-advocates, families, and a provider network can easily and efficiently connect individuals with I/DD to an appropriate provider.

Most importantly, it looks like neighbors across the state, with and without I/DD, knowing about the issues and committing themselves to a Top Ten vision that includes every Oklahoman.

Read the ORU research project here for more information on this topic. For questions about how to get involved in making a difference alongside the Oklahoma I/DD community, reach out to SOAR at bfredricks@soar.partners.

*the name “Jane” is used as a pseudonym

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