Seeking needed services, Kansans with developmental disabilities left waiting years through backlog

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SHAWNEE, Kan. — A state-wide backlog is preventing Kansans with disabilities from gaining access to the services they need. 

Johnson County officials estimate over 4,500 people with intellectual and/ or developmental disabilities (I/DD) have been placed on a waiting list to receive Medicaid funded support waivers from the state. 

Mandy Flower is the Director of Johnson County Community Developmental Disabilities Organization (CDDO). CDDO is the single point of entry for Johnson County for I/DD services. 

“Currently the waitlist is about a nine-year wait. In Johnson County we have a little over 800 people on that waiting list,” Flower said. 

All support programs are customized to meet the individual’s needs. Home and Community Based Service (HCBS) waivers can be used to cover the cost of housing, in-home care, or tuition for a day-service program to help the individual develop social skills, continue their education or begin job training. 

Photo courtesy of Willow Tree Supports

Seth Kilber is an Eligibility Determination Specialist for CDDO. He works directly with families trying to apply for I/DD service funding.

“The hardest conversation I have to have with families is usually about the waiting list,” Kilber said.

Kilber said without financial help from the state, out-of-pocket costs for support services could cost families roughly $50,000 per person each year. Without continual support, he says many I/DD individuals lose the skills they gain during their time in school.

“It doesn’t make a lot of sense to have people come out of high school at 18 or 21 and have made all this progress through high school but not be able to get into a day program,” Kilber said.

“What ends up happening is we see a lot of regression if they are not able to continue to build on the skills they learned in their high school program. That ends up costing the state money in the long run.”

Photo courtesy of Willow Tree Supports

Steven Haack is the Quality Assurance Coordinator for Willow Tree Supports, a day service provider based in Shawnee. Haack said long periods of time without support services could potentially put I/DD individuals at risk.

“The damage that is done during this wait time can be detrimental. There could be difficulty with the law. There could be difficulty with mental health issues When the supports aren’t in place, things tend to happen and they’re usually not very positive,” Haack said.

“I’ve seen a lot of tragic situations that stem from those who are on the cusp of getting the support they need and having them fall to abuse, neglect and exploitation. Several instances where people were victimized by predators who would steal social security money. Those who would be sex trafficked. Those who would be exploited in other ways, sometimes even by family members.”

A boost in state funding 

Photo courtesy of Willow Tree Supports

Kansas Governor Laura Kelly signed the state budget bill allocating roughly $36 million in additional funding for I/DD services.

Flower said the 7% budget increase was the largest increase to I/DD service funding in Kansas history. The funding is earmarked for providers to increase wages for employees working directly with I/DD individuals in an effort to retain skilled employees. 

Flower said increasing pay for support workers is a good first step, the state must also consider ways to address system capacity. 

“While we have seventy providers in Johnson County that do a fantastic job. If our waiting list was funded tomorrow that means we would have about 400, 500 of those 800 people we would need to find service for,” Flower said. “Our providers don’t have the capacity to take that on right now because of staffing,”

Closing the Gap

Younger children with I/DD needs typically get services through their school district. Flower said since the waitlist is so long, many people graduate high school without access to critical services. Johnson County CDDO has launched the Close the Gap campaign to help individuals retain services during the transition after high school. 

Photo courtesy of Willow Tree Supports

“Since that nine years is so long of a wait, we are really trying to target families that maybe have loved ones in school or younger so we can get them on that list,” Flower said. “The social service industry knows only one of about five people with an I/DD that would benefit or qualify from these services. Our goal with Close the Gap is to find these folks and help them get the services they need to live the life of their choice in their community.” 

It will take action from the legislature to allocate funding to clear the backlog of people waiting to receive service funding. Haack said many of the individuals waiting on funding are actively seeking ways to become more independent. He feels additional funding for the program could bring long-term benefits to the state and local community.

“They want to work. They want to give back. By supporting them just a little bit now, we are building up our communities. We are not only giving them a foundation, but we are realizing something within ourselves that you can’t put a price tag on,” Haack said.

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