Missouri scores high in serving intellectually, developmentally disabled

Missouri ranks fourth in how well it uses Medicaid programs to serve people with intellectual and developmental disabilities, according to the Case for Inclusion Report 2019.

The report - which has periodically been published since 2006 - is intended to show how well each state is performing, how each matches up against others, and whether policies and practices are meeting states' expectations.

The report considers 30 measures in five categories - promoting independence; promoting productivity; keeping families together; serving those in need; and tracking health, safety and quality of life - to illustrate how well states are doing.

"Missouri is one of the success stories," said Sean Luechtefeld, communications director for American Network of Community Options and Resources. "You all have been one of the most successful states in the country."

Missouri, he said, was ranked 41st in the inaugural report. The ranking hovered near the mid- to high-20s through 2013, when the state was ranked 29. There was a change in 2014, when the state ranking surged up to 10.

In recent reports, the state has ranked from third to eighth.

The sudden rise probably reflects significant changes within the state, Luechtefeld said.

"They may not have happened in 2013 and '14, but that's where the data started reflecting a change," he said. "Possibly reallocating the state's budget so there was more money going toward those smaller Intermediate Care Facilities."

How well states do really depends on policies they implement, he said.

The 2019 report found nationally, 424,000 people with the disabilities were on waiting lists to receive Medicaid-funded home and community-based services. That was an increase of 75,000 from 2018.

The waiting list (and the increased number of people on the list) are serious concerns for the United Cerebral Palsy Foundation and ANCOR, Luechtefeld said.

The ANCOR foundation is dedicated to expanding the commitment and capacity of providers and communities dedicated to improving the quality of life for people with disabilities, according to its website. Cerebral Palsy Foundation focuses on the eventual prevention of cerebral palsy and developmental disabilities, and also research and knowledge that can change lives.

A critical issue for providers who deliver services to people with developmental disabilities is recruiting and maintaining workforce and support staff.

"If you ask 100 providers, 99 would say the work force is the most difficult part," Luechtefeld said. "They find it nearly impossible to recruit people to fill those jobs. A high number of support professionals leave their jobs in the first year."

Direct support professionals (DSP) work directly with people with physical or intellectual disabilities, in efforts to help them become integrated into a community. There's not a lot of data concerning direct-support professionals because they're not classified as their own profession, he said. The job is low-paying and high-stress, he said.

"We anticipate that if states were making strides toward helping solve the DSP crisis, they would have a better outcome," Luechtefeld said. "Without nationally coordinated efforts and efforts toward communities, turnover problems will continue.

"We could take more people off of the waiting list, if not for a lack of those professionals."