1.	Vermont	18.	Florida	35.	Maine
2.	Arizona	19.	Rhode Island	36.	North Carolina
3.	Alaska	20.	New Jersey	37.	Utah
4.	New Hampshire	21.	Oregon	38.	Kentucky
5.	Massachusetts	22.	Wisconsin	39.	Iowa
6.	Michigan	23.	West Virginia	40.	North Dakota
7.	California	24.	Kansas	41.	Virginia
8.	Hawaii	25.	Washington	42.	Indiana
9.	Colorado	26.	South Dakota	43.	Tennessee
10.	Connecticut	27.	Montana	44.	Nebraska
11.	New Mexico	28.	Wyoming	45.	Ohio
12.	Minnesota	29.	Missouri	46.	Louisiana
13.	Delaware	30.	Oklahoma	47.	Illinois
14.	New York	31.	Georgia	48.	Dist. of Columbia
15.	Idaho	32.	Maryland	49.	Texas
16.	Pennsylvania	33.	Alabama	50.	Arkansas
17.	South Carolina	34.	Nevada	51.	Mississippi

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What We Don’t Know but Should
Unfortunately, some of the most important outcome data is not nationally collected or reported regularly. For example, to more completely assess key outcomes, states should report regularly and be scored on:

• Are services self-directed and how many individuals are participating in self-directed services?
• Are individual budgets used?
• What is the pay and turnover rate of direct support staff?
• What school-to-work transition programming exists for this population?
• What are the detailed results of standard client satisfaction surveys?
• What is each state’s long term plan to close large institutions (public and private), if any?

But advocates should always be looking at quality of life for the individual, irrespective of rankings and overall scoring. Aggregate data is important, but the true key to a state’s performance is what quality of life each individual is living. The ideal is for outcomes to be reviewed at the individual level.

Hopefully, these Case for Inclusion reports, coupled with other advocacy initiatives, will encourage national groups to begin collecting and reporting on the above data measures so that a more complete picture can be presented and scored in future rankings.

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What the Rankings Revealed – More Work Needs to Be Done but Improvements Made within the Past Year
1) All states have room to improve outcomes and services for individuals with intellectual and developmental disabilities. 2) Too many Americans with intellectual and developmental disabilities still do not live in the community, although real and notable progress has been made in just one year:

• Now three states, up from two Vermont, Nevada and Alaska – have more than 95 percent of individuals served living in home-like settings (at home, in their family’s home or in settings with three or fewer residents).
  • Still 19 states – same as last year, but up from 16 in 2007 have more than 80 percent of those served living in home-like settings.
  • Positively, there are 1,536 fewer Americans living in large state institutions (more than 16 beds). This is a bigger drop than seen last year. However, there remain 169 large institutions (4 fewer) housing 36,175 Americans.
  • Now only nine states (down from 11) report more than 2,000 residents living in large public or private institutions – California, Florida, Illinois, New Jersey, New York, North Carolina, Ohio, Pennsylvania & Texas.
  • The number of Americans with intellectual and developmental disabilities served in their own home skyrocketed by about 11,000 (to 115,700 from 101,100 two years prior) and the number served in community settings, with one to six beds, remained almost the same.
  • Nine states – Alaska, Hawaii, Maine, New Hampshire, New Mexico, Rhode Island, Vermont and West Virginia, and the District of Columbia - have no large state institutions.Thirteen states have only one large state facility remaining.
  • While the overall number of people served in the community increased just 2 percent, several states had a large increase in number of Americans reached. Five states – Idaho, Louisiana, North Carolina, Ohio and Texas – as well as the District of Columbia had at least a five percent increase in people served in the community (HCBS waiver). Wisconsin reduced number of people served in the community (HCBS waiver) by more than five percent.

3) Too much money is still spent isolating people in large institutions, with nominal change from last year:

• Nationally, 16.5 percent (down from 19 percent in two years) of those living in institutions consume over a third of all Medicaid funding spent on those with intellectual and developmental disabilities.
• Seven states – Alaska, Arizona, Michigan, New Hampshire, Oregon, Rhode Island, and Vermont– direct more than 95 percent of all related funds to those living in the community rather than in large institutions. Colorado directs a very close 94.6% of funds.
• Nationally, 29 states direct more than 80 percent of all related funding to those living in the community.

4) Waiting list are increasing overall, but performance is quite mixed by state. Most states are not serving all those in need:

• Only seven states – California, Hawaii, Idaho, Massachusetts, Michigan, Rhode Island, and Vermont - report maintaining a waiting list with no one waiting for residential services.
• Fifteen states report having a residential services waiting list solarge that their programs would have to grow by at least 25 percent to accommodate the need.
• 24 states – up from 18 the previous year - report maintaining a waiting list with no one waiting for Home and Community-Based Services (HCBS).
• However, eighteen states report having a HCBS waiting list so large that their programs would have to grow by at least 25 percent to accommodate the need.
• There is a real divide among states – those meeting the need and those documenting the unmet need through a waiting list.

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Movers and shakers
Only five states shifted by at least five places in the rankings from 2008 to 2009. However, 15 states shifted at least five places in the rankings from 2007 to 2009. As previously noted, the variation in scoring among most states is very small. Therefore, small changes in outcomes can mean a significant change in rankings. In total, 15 states had a sizable change in rankings over last two years. These states include:

State	2009 Ranking	2008 Ranking	2007 Ranking	Change from 2007 to 2009 (positive=improved)
Idaho	15	18	25	10
Indiana	42	41	37	-5
Maine	35	30	24	-11
Minnesota	13	12	7	-6
Missouri	29	28	41	12
Montana	27	26	19	-8
Nevada	34	34	27	-7
New Hampshire	4	9	11	7
Oklahoma	30	36	35	5
Pennsylvania	16	15	29	13
Rhode Island	19	27	28	9
Washington	25	21	20	-5
West Virginia	23	20	16	-7
Wisconsin	22	24	31	9
Wyoming	28	25	17	-11

Why? The answer is different for each state.

• Idaho - improved so dramatically because it directs a larger share of funding directly to the community and it enacted a Medicaid Buy-In program
• Indiana - dropped in ranking due to the large increase in the number of individuals served in residential setting with 7-15 individuals and a large reduction in the number served in settings with fewer than 7 residents. Also, the percent of individuals with competitive employment dropped by more than half - to 22 percent in 2006 from 48 percent in 2004.
• Maine - no one measure explains the big drop in the rankings. States in the middle are clustered very closely and a slight change in total scoring (in Maine's case from 68.4 in 2007 to 66.9 in 2009) can result in a substantial difference in the rankings
• Minnesota - drop in rankings due to the substantial decline in portion of individuals in competitive employment - to 15 percent in 2006 from 29 percent in 2004.
• Missouri - ranking improved as a result of a dramatic increase in the portion of resources being directed at community services (to 78 percent in 2007 from 50 percent in 2005). Missouri is also beginning to participate in a noteworthy quality assurance program, the National Core Indicators. On the negative, Missouri repealed its Medicaid Buy-in program.
• Montana - drop in rankings mostly due to not keeping pace with national increases in the number of families receiving family support (although Montana already had a robust program).
• Nevada -dropped in rankings due to drop in the portion of people in competitive employment (to 16 percent of recipients from 33 percent) and due to growth in its waiting lists.
• New Hampshire - improved in rankings due to beginning to participate in a noteworthy quality assurance program and a drop in the number of individuals served having a reported abuse complaint
• Oklahoma - improved in rankings not due to any single factor but as a result of slight improvements almost across the board
• Pennsylvania - improved in rankings due to substantial improvement in several areas including a dramatic increase in the number of individuals served (to almost 52,000 from less than 30,000), a substantial shift in more individual in community settings (less than 7 residents per setting, to 92 percent from 85 percent), a drop in population in large settings of 350??? Confusing statistic, the closure of one state institution, fewer cases of reported abuse and a reduction in its waiting lists
• Rhode Island - improved in rankings due to adding a Medicaid Buy-in program and a drop in the number of cases of reported abuse
• Washington - change in ranking a result of a very modest change in overall score among several states that are closely clustered
• West Virginia - dropped in rankings mostly due to not keeping pace with the rest of the country and due to not serving more families in family support
• Wisconsin - improved in rankings due to a substantial increase in the number and overall portion of individuals served in the community and a higher share of spending directed toward community services.
• Wyoming - dropped in ranking as a result of modest change in overall score and mostly attributed to a drop in individuals in competitive employment (to 21 percent from 25 percent)

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