Highlights




Significant takeaways from the 2013 ranking:

 

All states still have room for improvement, but some states have consistently remained at the bottom since 2007, including Arkansas (#50), Illinois (#48), Mississippi (#51) and Texas (#49). While these states need real attention, they are not reflective of the real improvement in Inclusion for the vast majority of states, as highlighted below.

 

38 states now meet the 80/80 Community standard, which means that at least 80% of all individuals with ID/DD are served in the community, and 80% of all resources spent on those with ID/DD are for community support. Those that do NOT meet the 80/80 standard are Arkansas, Illinois, Iowa, Kentucky, Louisiana, Mississippi, Nebraska (very close), New Jersey, North Carolina (very close), Oklahoma (very close), Texas, Utah (very close), and Virginia (very close). This measure has improved hugely over the life of the Case for Inclusion. For the 2007 Ranking, only 14 states met this 80/80 Community standard.

 

As of 2011, 13 states have no state institutions to seclude those with ID/DD, including Alabama (new this year), Alaska, Hawaii, Maine, Michigan, Minnesota (which closed its last remaining institution in June 2011), New Hampshire, New Mexico, Oregon, Rhode Island, Vermont, West Virginia and DC. Another 10 states have only one institution each. Since 1960, 209 of 354 state institutions have been closed leaving just 149 remaining, according to the University of Minnesota's Research and Training Center on Community Living. This measure has improved substantially over the life of the Case for Inclusion. For the 2007 Ranking, only 9 states had no state institution, another 13 states having just one facility, and there were 176 state institutions open.

 

 

21 states now meet the 80% Home-like Setting standard, which means that at least 80% of all individuals with ID/DD are served in settings such as their own home, a family home, family foster care or small group settings like shared apartments with fewer than three residents. The US average for this standard is 79%. Just eight states meet a 90% Home-like Setting Standard, and these top performers include Alaska (new this year), Arizona, California, Kentucky (new this year), Nevada, New Hampshire, New Mexico (new this year) and Vermont. This measure has improved only somewhat over the life of the Case for Inclusion. For the 2007 Ranking, only 17 states met this Home-like Setting standard.

 

 

 

34 states participate in the National Core Indicators (NCI) model a comprehensive quality assurance program that includes standard measures to assess outcomes of services (nationalcoreindicators.org). In January 2012, the Obama Administration made available grant funding so that even more states could participate and ensure that their quality assurance efforts were benchmarked and comprehensive (NCI has more than 100 measures; see Endnote #3 for more details). This measure has improved dramatically over the life of the Case for Inclusion. For the 2007 Ranking, only 24 states were NCI participants.

 

Only 15 states were supporting a large share of families through family support (at least 200 families per 100,000 of population). This is important, because those support services provide assistance to families that are caring for children with disabilities at home, which helps keep families together and people with disabilities living in a community setting. These family-focused state programs were in Alabama, Arizona, California, Delaware, Louisiana, Minnesota, Montana, New Hampshire, New Mexico, New York, Pennsylvania, South Carolina, South Dakota, Vermont and Wisconsin. This measure has improved dramatically over the life of the Case for Inclusion. For the 2007 Ranking, only 10 states met this benchmark.

 

Just ten states have at least one-third (33%) of individuals with ID/DD working in competitive employment, which best recognize and support work as key to a meaningful life. These states include Connecticut, Louisiana, Maryland, Nebraska, New Mexico, Oklahoma, Oregon, Vermont, Virginia, and Washington. DC and Pennsylvania were very close. This measure has plummeted over the life of the Case for Inclusion. For the 2007 Ranking, 17 states were meeting this standard.

 

 

Waiting lists for residential and community services are high and show the unmet need. More than a quarter of a million people (268,000) are on a waiting list for Home and Community Based Services. This would require a daunting 44% increase in states' HCBS programs! However, 20 states report no waiting list or a small waiting list (requiring less than 10% program growth). This measure has gotten much worse over the life of the Case for Inclusion. Since the 2007 Ranking, the size of the waiting list nationally has almost doubled from 138,000 to 268,000.

 

 

Most Improved and Biggest Drops in Rankings:

17 states have moved at least 10 places in the rankings from 2007 to 2012. Nine states improved dramatically, while eight states dropped significantly.

Alabama – improved 12 places since 2007 - closed a state institution and made modest gains in most measures.

Alaska – dropped 29 places since 2007 – fell so dramatically because the number of people being served in a family home was previously estimated (by the state) at 3,700 for the 2007 ranking. Beginning with the 2010 ranking, it was reported accurately at around 200 people served. It is also important to note that Alaska does not participate in NCI.

Colorado – dropped 24 places since 2007 – fell so dramatically because of a significant decline in competitive employment participation, (from 53% to 25%) and the state does not participate in NCI.

Delaware – dropped 14 places since 2007 – dropped out of the National Core Indicators and declined in competitive employment participation from 30% to 19%.

District of Columbia – improved 13 places since 2007 – increased the portion of individuals served in home-like settings (from 48% to 74%)

Kansas – dropped 19 places since 2007 – had a drop in the number of individuals served in their own homes and family homes, has had a drop in families served through family support, does not participate in the NCI and has had their waiting list grow significantly.

Louisiana – improved 23 places since 2007 – had huge improvement in the portion of individuals (from 49% to 65%) and resources (from 41% to 79%) dedicated to community services over institutions, and it had large drop in the portion of individuals served in large institutions (from 18% to 7%).

Maine – dropped 14 places since 2007 – stopped participating in the National Core Indicators and increased the size of their waiting list (from 105 people to 930 waiting for residential services)

Maryland – improved 18 places since 2007 – closed two state institutions and reduced the population at state institutions by 61%. The state also began participating in NCI and added a Medicaid Buy-in Program to support individuals as they go to work, increase their productivity and raise their incomes.

Minnesota – dropped 18 places since 2007 – does not participate in the National Core Indicators and slightly decreased the portion of individuals served in home-like settings (compared to the national trend in the opposite direction)

Missouri – improved 12 places since 2007 – dramatically increased the share of individuals (to 82% from 63%) and resources (from 50% to 82%) dedicated to the community, closed a state institution, reduced by half the portion of individuals served in large institutions (from 18% to 9%), started participating in NCI and reported on its waiting list which was of average size.

New Jersey – dropped 19 places since 2007 – did not change significantly but as the states improved overall, NJ's stagnation meant it fell in the rankings.

North Carolina – dropped 11 places since 2007 – dropped due to decline in the number of individuals served in their own homes or a family home and a drop in competitive employment participation from 22% to 17%.

Ohio – improved 26 places since 2007 – dramatically increased the share of individuals (to 83% from 63%) and resources (to 80% from 50%) dedicated to the community, closed a state institution and decreased number of people there by 24%, reduced by two-thirds the portion of individuals served in large institutions (from 18% to 6%), and started participating in NCI.

Oregon – improved 18 places since 2007 – starting participating in the National Core Indicators, increased portion of individuals served in home-like settings (from 75% to 82%), and increased competitive employment ( from 35% to 42%).

Pennsylvania – improved 18 places since 2007 – substantially increased the portion of resources dedicated to people in the community (from 70% to 81%), dramatically increased the portion of people served in home-like settings (from 58% to 83%), reduced by almost half the portion of people served in large institutions (from 11% to 6%) and closed a state institution.

Washington – improved 14 places since 2007 – closed a state institution and accurately reporting on its waiting list, which is relatively small.

West Virginia – dropped 17 places since 2007 – dramatically increased the share of resources going to the community (from 77% to 99%), does not participate in NCI and had a drop in competitive employment.

Wisconsin – improved 17 places since 2007 – dramatically increased the share of resources (from 72% to 87%) and people (88% to 96%), reduced the number of individuals at large state institutions by 22%, and joined National Core Indicators.

Wyoming – dropped 17 places since 2007 – primarily due to the fact that it does not participate in NCI and resulting from a large drop in competitive employment (from 25% to 13%).

2013 report comparisons are from 2007 rather than 2006, because that year's index was slightly different.









An Analysis of Medicaid Outcomes for Americans with Intellectual & Developmental Disabilities

United Cerebral Palsy (UCP) releases The Case for Inclusion each year, tracking the progress of community living standards for Americans living with intellectual and developmental disabilities (ID/DD). The report examines data and outcomes for all 50 states and the District of Columbia (DC), ranking each on a set of key indicators, including how people with disabilities live and participate in their communities, if they are satisfied with their lives, and how easily the services and supports they need are accessed. By taking these factors into account, UCP is able to develop a comprehensive analysis of each state's progress or failures in providing critical services to individuals living with disabilities.

The findings for 2013 reveal that: 1) All states have room for some improvement, but some have consistently remained at the bottom of the rankings; 2) Despite economic strains, many states have made real improvements in the quality of services being provided; 3) There is still work to be done in ensuring that people with ID/DD can enjoy the same freedoms and quality of life as all Americans.

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