How Many People are Still Institutionalized?

DD Institutions -
How Many People are Still Institutionalized?
Information Bulletin #105



How well are we moving towards the goal of ending, as the Supreme Court stated in Olmstead, unnecessary institutionalization in the DD community? Braddock's 2005 State of the States in Developmental Disabilities (for FY 2004) provides an opportunity to measure where we are and to compare states.

Of the nearly 500,000 persons in the US with DD who are in "out-of-home residential placements":

21% (103,000) were in institutions with 16+ persons;
11% (55,000) in institutions with 7 -15 persons; and
68% (335,000) in 1 -6 persons settings (Table 4).
Few people argue that the 103,000 and 55,000 (nearly 37%) in settings with 7+ persons are unnecessarily institutionalized.

Let's breakdown the 335,000 persons in settings of 1-6 people:

While smaller living arrangements are, obviously, less institutionalized, there are 22,000 people who are in either public or private ICF/MR settings. ICF/MRs, whether private or public, have many of the restrictions of larger institutions and are unnecessarily institutionalized.
About 155,000 persons in "supportive living/personal assistance." These persons "choose where and with whom they live..., and the individual has a personalized support plan that changes as her or his needs and abilities change."
The remaining 158,000 are in a catchall called "group homes" - these persons are in either a MA waiver program, "host homes," or "foster care."
Let's look at costs:

The average financial costs of these different settings are dramatically different and quite expensive.

For the larger State operated institutions, the average cost is $146,000 per person per year and private ICF/MR cost $68,000 per person per year (Table 6).
For the smaller (15 or less), the private ICF/MR institutions cost $75,000 and the public (same size) ICF/MR institutions cost $86,000 per year.
In comparison with those settings of 6 or less persons, the supportive living/personal assistance cost only $21,000 and Medicaid Home and Community Based Waivers average $38,000 per year per person.

These different costs for institutional and noninstitutional settings raise questions:

Why are we continuing with costly unnecessary institutionalization in ICF/MRs and other large institutions when States could save money and integrate persons more cheaply?
How much of the high per capita costs are due to the significant needs of the population versus the professional/provider industry benefitting from alleged "needs" and not the real needs of the individual?
How many persons in each setting has a cognitive disability acquired prior to age 22, or a physical disability acquired prior to age 22, and how many have both labels?
Would not a system based on the needs rather than age of onset better serve the disability community philosophy of cross-disability cooperation premised in the ADA?
It is important, for both independence, civil rights and costs, to know by state how many persons with DD in your State who are NOT in supportive living/personal assistance or NOT in one of the "group homes," but are still in institutions (whether in a State institution, private or public ICF/MR regardless of the size, larger "other residential," or nursing home).

In many of the following states, the goal of ending unnecessary institutionalization is within reach, but it requires taking on the public and private ICF/MR institutions. In other states, why are there so many persons still institutionalized.

Here's a State by State breakdown of people who are institutionalized because they are in settings of 7+ or in ICF/MRs of 1- 6 years.

Alabama - 1,992 out of 4,295 are still in institutions, 46%;
Alaska - 7 out of 977 are still in institutions, less than 1%;
Arizona - 291 out of 7,454 are still in institutions, 4%;
Arkansas - 3,512 out of 6,176 are still in institutions, 57%;
Calif. - 16,241 out of 55,052 are still in institutions, 30%;
Colorado - 991 out of 7,748 are still in institutions, 13%;
Conn. - 2,057 out of 7,222 are still in institutions, 28%;
Delaware - 243 out of 970 are still in institutions, 25%;
D.C. - 1,114 out of 1,521 are still in institutions 73%;
Florida - 6,034 out of 16,198 are still in institutions 37%;
Georgia - 3,320 out of 7,954 are still in institutions 42%;
Hawaii - 182 out of 1,234 are still in institutions 18%;
Idaho - 835 out of 3,647 are still in institutions 23%;
Illinois - 11,339 out of 19,652 are still in institutions 58%;
Indiana - 5,845 out of 15,043 are still in institutions, 39%;
Iowa - 4,769 out of 10,663 are still in institutions 45%;
Kansas - 658 out of 5,139 are still in institutions, 13%;
Kentucky - 1,634 out of 4,063 are still in institutions, 40%;
Louisiana - 6,342 out of 8170 are still in institutions, 78%;
Maine - 830 out of 4,009 are still in institutions, 21%;
Maryland - 520 out of 6,865 are still in institutions, 8%;
Mass. - 3,127 out of 11,909 are still in institutions, 26%;
Michigan - 4,633 out of 16,424 are still in institutions, 28%;
Minn. - 2,572 out of 14,893 are still in institutions, 17%;
Miss. - 3,142 out of 4,970 are still in institutions, 63%;
Missouri - 3,886 out of 8,688 are still in institutions, 45%;
Montana - 681 out of 2,040 are still in institutions, 33%;
Nebraska - 715 out of 3,443 are still in institutions, 21%;
Nevada - 254 out of 1,570 are still in institutions, 16%;
New Hampshire - 122 out of 2,273 are still in institutions, 5%;
N.J. - 5,188 out of 12,509 are still in institutions, 42%;
New Mexico - 487 out of 2,894 are still in institutions, 17%;
New York - 24,633 out of 54,338 are still in institutions, 45%;
N.C. - 5,792 out of 18,178 are still in institutions, 32%;
North Dakota - 960 out of 1,921 are still in institutions, 50%;
Ohio - 4,272 out of 18,785 are still in institutions, 23%;
Oklahoma - 2,986 out of 5,451 are still in institutions, 55%;
Oregon - 650 out of 5,003 are still in institutions, 13%;
Penn. - 6,685 out of 24,415 are still in institutions, 27%;
Rhode Island - 331 out of 2,219 are still in institutions, 15%;
S.C. - 2,297 out of 4,785 are still in institutions, 48%;
South Dakota - 991 out of 2,550 are still in institutions, 39%;
Tennessee - 2,793 out of 6,862 are still in institutions, 41%;
Texas - 15,879 out of 23,310 are still in institutions, 68%;
Utah - 1,108 out of 3,409 are still in institutions, 33%;
Vermont - 33 out of 1,275 are still in institutions, 3%;
Virginia - 3,757 out of 7,373 are still in institutions, 51%;
Wash. - 1,983 out of 13,067 are still in institutions, 15%;
W.V. - 1,076 out of 4,572 are still in institutions, 24%;
Wis. - 3,515 out of 18,436 are still in institutions, 19%;
Wyoming - 250 out of 771 are still in institutions, 32%;

US - 179,194 out of 492,385 are still in institutions, 36%

[These were computed by subtracting the number of persons in the state's settings in "other residential" from the state's "Total persons served by setting."]


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Steve Gold, The Disability Odyssey continues