Editor's Note: The editors of Trends and the authors of this article have retracted it due to imprecision with the operational definitions. An article with the same name is in the June 2011 issue of IDD.
The Healthy People (HP) 2010 initiative established goals and specific objectives for improving health in the United States. Among the specific national objectives reported in Chapter 6: Disability and Secondary Conditions (U.S. Department of Health and Human Services, 2000) was Objective 6.7b: “Reduce to zero the number of children aged 17 years and younger living in congregate care facilities” (pp. 6–17). Congregate care facilities were defined for children as an out-of-home facility of any size that provides housing for people with disabilities, in which rotating staff members provide care, excluding foster care, adoptive homes, residential schools, correctional facilities, and nursing facilities (pp. 6–25). To measure progress toward meeting this objective, state developmental disabilities program agencies were asked in 2009 to report the numbers of children (0–14 years), youth (15–18), and young adults (18–21 years) with intellectual and developmental disabilities (IDD) in “out-of-home residential placements.” Out-of-home residential placements were defined as places other than a parental, adoptive, or relative's home where children and youth with intellectual and developmental disabilities received residential supports.
In 2009, 36 states and the District of Columbia reported all of the requested information, and 49 states reported the number of people ages birth to 21 year and/or the number of people ages birth to 18 with IDD living in places other than their family home. Estimated U.S. totals were derived by applying the national average percentage of children for a given data point to each state with missing information.
The total number of children and youth with disabilities living in congregate care settings dropped from 90,942 in 1977 to 26,028 in 1997, and the proportion of people with disabilities in congregate care settings who were 21 years or younger dropped from 37% to 8% during those years (see Figure 1). However, these declines did not continue. Between 1997 and 2009 (the target period for this HP 2010 objective), the number of children ages birth to 14 years living in congregate care settings declined slightly from 10,243 to 9,734, but the number of those ages 15 to 21 years living in those settings increased from 15,785 to 19,696. Similarly, the proportion of children 14 years and younger with IDD living in congregate settings declined slightly (from 3.0% to 2.2%) between 1997 and 2009, but the proportion who were 15 to 21 years increased slightly from 4.6% to 4.7%. The goal of having zero children with disabilities living in congregate care settings by 2010 was not met. In fact, the estimated total number of these children and youth (birth to 21 years) living in congregate care settings increased from 26,028 in 1997 to 29,430 in 2009. The proportion of all people with IDD in residential care settings who were 21 years or younger declined only slightly from 7.6% in 1997 to 6.9% in 2009. The estimated number of children ages birth to 18 years old living in congregate settings was not reported in 1997 but increased from 16,421 in 2005 to 19,052 in 2009. This included an increase of 1,808 in the number of children ages birth to 14 years and an increase of 823 in the number of children ages 15 to 18 years living in congregate care settings.
States varied dramatically in the extent to which they made progress toward meeting the HP 2010 objective (see Table 1). Comparisons of changes in the use of congregate residential care for children and youth with IDD are summarized here only for those states that provided the necessary data for both 1997 and 2009. Of the 44 states with data for both years, 24 states reported a decrease in the total number of children and youth ages 21 or younger living in congregate care settings between 1997 and 2009. As a percentage, the greatest decreases were reported in Colorado (91%), Delaware (80%), New Mexico (79%), and Virginia (71%). Numerically, the largest declines were in Illinois (730), Louisiana (316) Indiana (310), Virginia (275), and Texas (275).
By contrast, the number of children and youth with IDD ages 21 years and younger reported to be living in congregate care settings increased in 20 states between 1997 and 2009. Eight states reported more than doubling the number of children and youth with disabilities living in congregate care settings between 1997 and 2009 (West Virginia, District of Columbia, Washington, Ohio, Vermont, Nevada, Kansas, and Oregon). The estimated number of children and youth with IDD living in congregate care settings grew by more than 500 in Ohio, Florida, West Virginia, Washington, and Oregon, and by between 100 and 435 in 8 additional states between 1997 and 2009.
Although some of the year-to-year differences in state estimates may have been due to changes in state data sets and administrative arrangements, it is clear that the United States did not accomplish its Healthy People 2010 Objective 6.7b. In fact, the nation added an estimated 3,402 children and youth with IDD to the total number living in congregate care settings between 1997 and 2009. Most of this increase occurred between 2005 and 2009. In all, 24 states reported overall decreases in the number of children and youth with IDD in congregate care settings, whereas 20 states reported increases between 1997 and 2009.
(Sources: Prouty, R., Lakin, K. C., Coucouvanis, K., & Anderson, L. (2005). Progress toward a national objective of Healthy People 2010: “Reduce to zero the number of children 17 years and younger living in congregate care”. Mental Retardation, 43, 456–460; U.S. Department of Health and Human Services (2000). Healthy people 2010: Understanding and improving health (2nd ed.). Washington, DC: U.S. Government Printing Office. Retrieved September 8, 2010, from http://www.healthypeople.gov/document/pdf/Volume1/06Disability.pdf.)
Preparation of this article was supported by a grant from the Administration on Developmental Disabilities (Grant 90D0217/01) of the U.S. Department of Health and Human Services and a cooperative agreement with supplemental support from the National Institute on Disabilities and Rehabilitation Research, U.S. Department of Education (Agreement H133B080005-09) to the University of Minnesota's Research and Training Center on Community Living. Pat Salmi gathered most of the 2009 data for this report.
Edited by K. Charlie Lakin and David Braddock