The two areas where Utah ranks lowest are in keeping families together and promoting independence. This should be surprising given Utahns' core values are family and self-reliance. What explains our dismal track record and what can we do to turn it around?
Fewer than 4 percent of potentially eligible Utah children and adults with intellectual disabilities received any support from the Division of Services for People with Disabilities (DSPD) in 2010. Additionally, according to DSPD's 2013 annual report, nearly 1,900 individuals are waiting an average of six years for services.
With numbers like these, it's clear why congregate care settings attracted more than 300 new residents over seven years. The opening of three new facilities within the last two years is also completely understandable when viewed from this perspective. Even so, there's growing worry we may be seeing the beginning of forced re-institutionalization.
What's harder to explain is the state's lack of will to respond by investing in less expensive alternatives. A group home can cost upwards of $56,000 a year. Conversely, a combination of provider-based in-home supports may run roughly $35,000 a year. Unfortunately, little more than two-thirds of DSPD's budget was dedicated to non-residential community-based settings in 2012. Similarly, fewer than three-quarters of DSPD's clients lived in a homelike environment (1-3 persons) at the time. The national standard is 80 percent. The money's obviously there, it simply needs to be redirected.
In another vein, a 2011 National Association of Councils on Developmental Disabilities report found that 88 percent of working-age adults with developmental disabilities were unemployed. Despite recently passed "Employment First Priority" legislation, Utah's numbers aren't much better. In fact, the number of DSPD clients in supported or competitive employment declined from 34 percent to 27 percent between 2004-2012. This while client satisfaction data indicates half of those surveyed want or may want a job in the community, and a quarter would like help with employment.
On a related note, last month the Department of Justice and Rhode Island signed a landmark consent decree. The decree is intended to remedy the fact that almost 80 percent of Rhode Islanders with developmental disabilities receiving state funds are in day programs or sheltered workshops, and that less than 5 percent of Rhode Island students with developmental disabilities leaving secondary school have jobs in integrated settings. Interestingly, a few Utah school districts have similar relationships with day programs and sheltered workshops to those of concern to DOJ. Adding to the urgency, DOJ says it views the decree as a model for the other 49 states.
On the bright side, the report highlights promising practices, such as Kansas' Medicaid managed care reform and Washington's "Working-age Adult" policy, designed to help individuals and families be as self-sufficient as possible and remain together. Let's learn from them and put a little more distance between ourselves and Mississippi.
Camille Coon coordinates the Disability Law Center's efforts to protect and advocate for individuals with developmental disabilities living in a facility or the community.