By LEXI CHURCHILL, ST. LOUIS POST-DISPATCH
JEFFERSON CITY • The Show-Me state’s intellectual and developmental disabilities services have improved from one of the worst in the country to No. 4 overall — all within barely more than a decade.
These findings are compiled in the latest Case for Inclusion report, generated by the ANCOR Foundation and United Cerebral Palsy. The nationwide survey evaluates the effectiveness of each state’s disability services based on how well they reach those in need, promote productivity and independence, keep families together and measure quality of life.
The 2019 study, using mostly 2016 data, highlights Missouri’s short waiting lists and transition away from housing those with disabilities in large state-run institutions. Instead, the state now serves 97 percent of disabled residents through community-based programs.
Plus, based on a national survey, those participating in state programs say they are maintaining a positive quality of life. A statewide questionnaire asked about 400 individuals in community-based environments questions about relationships, daily tasks and negative feelings, according to Missouri’s National Cores Indicator coordinator Caitlin Bartley.
When the Case for Inclusion study was first published in 2006, Missouri was ranked No. 41 nationally. At the time, nine large state-run institutions housed over 1,000 people, while nearly 500 individuals and families sat on a waiting list for residential services.
Valerie Huhn, Missouri Department of Mental Health’s Director of Developmental Disabilities, attributes much of the state’s progress since then to the Partnership for Hope waiver. The program, launched in 2010, allows individuals and families with disabilities to use the waiver for needs amounting to about $12,000 or less.
Huhn says the original thought was that people would use the program as a first step before proceeding to more expensive services like the Comprehensive Waiver, which costs $80,000 per person.
Instead, people have used the short-term waiver for immediate needs such as transportation and personal assistance services, then returned a few years later when they needed more help. By addressing these “easy issues” upfront, the department is better able to prevent them from turning into “big expensive crisis issues in the future,” according to Huhn.
“That helped us eliminate our wait list which now allows us to serve people before they’re in a crisis situation and that’s a really big deal,” Huhn said.
Partnership for Hope also proved to be economically savvy according to a comprehensive evaluation of the program published by the University of Missouri-Kansas City’s Institute for Human Development in 2017.
“The unique structure of PfH allows the state and counties to split the state Medicaid match amount, providing the state more funding for services than traditionally funded Medicaid programs, where specifically, for each $1 spent by the state and counties, Missourians with DD received about $5.34 worth of supports and services,” the study found.
The program has served more than 4,000 people, according to the 2017 findings.
Missouri’s disability service advances can also be traced to its transition from state institutions toward community-based residential programs. About 64 percent of the people accounted for in the original Case for Inclusion report have left Missouri’s larger facilities.
While the survey commended the state for closing three of its institutions, the report pushes to eliminate them altogether, as 14 other states and the District of Columbia have done.
“Nationally, (eliminating institutions) is clearly the goal, but we still find value in them,” Huhn said.
Huhn said the state sometimes leans on the facilities as temporary housing for those experiencing “crisis placements where someone will be left in a hospital, left in a jail.
“So then occasionally we will utilize the institutions for those individuals but the goal the entire time they’re there is to get them back out in a community placement,” Huhn said.
The Department of Mental Health’s growing budget has helped expand disability services as well. Over the past eight years, the funding for the Division of Developmental Disabilities alone has increased from around $600 million to over $1.1 billion.
Gov. Mike Parson’s recently released budget recommendations included an additional $100 million in general revenue for the department.
A need for jobs
Despite its strides toward improved disability services, Missouri is still struggling with some of the same issues that are recognized nationally. For the Show-Me state, it comes down to jobs — jobs for those with disabilities and jobs for those assisting them, also known as direct support professionals.
Brianna Washington, a St. Louis resident, has been attending classes and volunteering at Paraquad, an independent living center for residents with disabilities, for years. This past year, she decided she wanted to start being paid for her work.
Washington applied to the state’s job program for those with disabilities through Paraquad and landed a gig at Bloom Cafe. While in the training phase of the program, Washington has started with short shifts on Friday afternoons, working her way up to expanding her hours.
Though Washington has enjoyed the program, many other Missourians with disabilities have not participated in the state’s employment programs. The Case for Inclusion study found only 10 percent of residents with intellectual and developmental disabilities are competitively employed, or working alongside those without disabilities — amounting to about half the national average.
The Missouri Department of Mental Health is aiming to enroll 35 percent of individuals between 16 and 64 in employment services, “which is a stretch,” Huhn admits.
Since the department launched its Empowering through Employment program in October 2016, the number of those enrolled jumped to 960 from 367 as of December. Still, Huhn says that makes up only about 7.5 percent of the targeted population.
“We’re far from where we need to be, but that’s okay,” Huhn said. “We continue to work on it. We talk about it every month because getting people employed is the best thing we can do for individuals with disabilities.”
Missouri’s low employment of residents with intellectual and developmental disabilities stems in part from another shortage.
The latest Case for Inclusion report labeled the nationwide direct support professional deficit as “A Workforce in Crisis.” DSPs help individuals with disabilities with day to day tasks like driving and getting dressed.
In Missouri these hands-on employees make an average of $10.56 an hour, according to a 2015 NCI report. The same data showed a 49.1 percent turnover rate in Missouri, with 8 percent of jobs remaining vacant from time to time.
Nearly 90 percent of former DSPs said they left their jobs because of inadequate wages, according to a survey included in the Case for Inclusion report.
ANCOR and ANCOR Foundation CEO Barbara Merrill said the crisis could have damaging effects on disability services across the country.
“Without the professional staff needed to provide the supports and services that enable people with I/DD to be integrated into the community, provider agencies have little hope of maintaining and expanding on any progress they’ve seen in the past decade,” Merrill said in a press release.