A publication of the Kentucky Center for Public Service Journalism

Report ranks Kentucky fifth in efforts to serve those with intellectual and developmental disabilities 

Kentucky has made significant strides to improve policies that help individuals with intellectual and developmental disabilities lead more independent and productive lives, according to a just-released report.

The evaluation propels the Commonwealth from 40th in 2007, to fifth in state rankings this year, one of the most significant climbs in the nation.

The report was compiled by the ANCOR Foundation and United Cerebral Palsy (UCP).

The ANCOR Foundation exists to expand the commitment and capacity of providers and communities dedicated to improving the quality of life of people with intellectual and developmental disabilities.

United Cerebral Palsyeducates, advocates and provides support services through an affiliate network to ensure a life without limits for people with a spectrum of disabilities.

The Case for Inclusion 2019 ranks all 50 states and the District of Columbia on how well state programs, primarily Medicaid, serve those with intellectual and developmental disabilities (I/DD).

The states are ranked in five key areas critical to the inclusion, support and empowerment of individuals with I/DD and their families: Promoting Independence, Promoting Productivity, Keeping Families Together, Serving Those in Need, and Tracking Health, Safety and Quality of Life.

Kentucky showed particularly notable improvement since the 2016 Case for Inclusion in the portion of those with I/DD living in large, state-run institutions.

The state still operates two of these facilities, but the percentage of residents with I/DD living in such settings declined from just over five percent to 2.3 percent in the 2019 Case for Inclusion, while the number of individuals living in such settings dropped from 304 to 132.

Despite these important improvements, Kentucky, like most others, struggled in two critical areas:

*The number of people on waitlists for residential and community services, and

*The number of individuals with I/DD working in competitive employment, meaning they work alongside people without disabilities at a market-driven wage.

The number of people on waiting lists for Home and Community-Based Services was up to 2,276 in Kentucky, compared to 1,000 in the 2016 report. The state also had just 10 percent of working-age individuals with I/DD working in competitive employment—about half the national average of 19 percent.

Nationally, the number of people on waiting lists for Home and Community-Based Services was up 75,000 from the 2016 report to almost 424,000. Just seven states, down from 10 in 2016, reported at least 33 percent of working-age individuals with I/DD working in competitive employment.

“Individuals with I/DD, including the young and the aging, want and deserve the same opportunities and quality of life as all Americans. Yet some states do much better than others in demonstrating the needed political will and in implementation of the sound policies and focused funding necessary to achieve this ideal,” the report states.

The Case for Inclusion, which has been published regularly since 2006 by UCP, compiles the most recent data available (generally from 2016 for this report) and analyzes 30 outcome measures in the five major categories. The ANCOR Foundation joins UCP this year in publishing the report.

Among the other findings on Kentucky’s performance:

•By moving up 35 spots in the rankings, Kentucky has seen the third-largest improvement in the rankings in the nation since the Case for Inclusion began publication. Only Ohio and Missouri saw bigger gains.

•97 percent of Kentuckians with I/DD—a rate consistent with the 2016 report—were receiving Medicaid waiver-funded services.

•When it comes to the number of dollars the state spent per family to keep families together, Kentucky outpaced all but one other state (Iowa), with an average spending of $32,919 per family.

•Kentucky’s biggest area for improvement is in the category of Promoting Productivity, where it ranked 46th in the nation. Beyond its low competitive employment rates, Kentucky saw lower-than- average rates of participation in Vocational Rehabilitation (48 percent of residents with I/DD, compared to a national average of 54 percent) and rates of participants continuing to be employed one year after receiving Vocational Rehabilitation supports (18 percent, compared to a national average of 29 percent).

Nationally, the report found that notable advances in the support of individuals with I/DD have stalled. For instance, just 29 states—two more than in the 2016 Case for Inclusion—report that at least 80 percent of these Americans are served in home-like settings, such as a family home, their own home or a small group setting—a number that hasn’t budged from the 2016 Case for Inclusion findings. And decades after states embarked on efforts to close large institutions that warehouse the intellectually and developmentally disabled, just 15 states have eliminated all such facilities, a number that is also unchanged from 2016.

Factors driving the stagnating or downward trends include states forgoing Medicaid expansion and growing shortages in Direct Support Professionals (DSPs), the frontline workers who help those with disabilities integrate into the community.

“The DSP workforce crisis may be the most significant challenge we face in improving the outcomes tracked by the annual Case for Inclusion,” said ANCOR and ANCOR Foundation CEO Barbara Merrill. “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.”

The full Case for Inclusion 2019 report, along with scorecards for each state and additional resources, can be downloaded here.

The ANCOR Foundation

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