Editor's Note: This article replaces an article of the same title published in Trends and Milestones in the October 2010 issue of IDD. The earlier article is hereby retracted.—K. C. Lakin and D. Braddock.
Authors' Note: We regret the need to revise our earlier article. We are grateful to John Martin of the Ohio Department of Developmental Disabilities for his constructive review of the imprecision in the definitions used in the earlier study and their effects on the data reported by states. After reviewing the operational definitions employed in the initial 2009–2010 state survey, we concluded that we would need to go back to states to give them an opportunity to respond to a more complete operational definition. In January 2011, we sent a revised request to states. In that request congregate care facilities were defined as a “non-family residential setting of any size that provides housing for children and youth with intellectual or developmental disabilities in which rotating (or shift) staff members provide care.” We specified that the children and youth should not be included in the estimates if they were: (a) living with birth or adoptive parents or other family members; (b) living in family foster care settings in which no shift staff work; (c) living in other states; (d) living in residential schools operating on a 9-month academic year, correctional facilities, or nursing facilities (these are surveyed separately); or (e) receiving only respite services from a congregate care facility. We included the 1997, 2005, and previously reported 2009 estimates with the letter and asked states to either confirm that the information was correct or to send us a revised estimate.
In March 2011, we completed the follow-up surveys. As a result, 28 states changed one or more data reports for 2009. In addition, 10 states made changes to their 1997 data reports and 9 states reported changes to their 2005 data. States reported a variety of reasons for the changes. The most common reason for change was that states had initially included children living in family foster care as living in congregate settings.
The Healthy People 2010 initiative established goals and specific objectives for improving health in the United States. Among the Healthy People 2010 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).
Between July 2009 and March 2011, we asked state developmental disability agencies to report actual counts or best estimates of the number of children and youth (ages 0 to 21 years) with intellectual disability or developmental disabilities who lived in non-family settings. Settings included group homes, ICFs/MR, and other congregate care settings with rotating staff. We asked states to report children and youth who received publicly funded intellectual and developmental disabilities services, including state-only funding as of June 30, 2009, for three age groups: 0 to 14 years, 15 to 18 years, and 19 to 21 years. This survey was in response to a Centers for Disease Control (CDC) request to gather period data to assess progress toward the Healthy People 2010 Objective 64.7. Data reports and verification were completed in March 2011. All states and the District of Columbia provided data for at least part of the 2009 survey, with 11 states reporting partial data. National estimates were made for each data element by assuming the proportion of children and youth in non-family residential services was the same for nonresponding states as for those that did respond.
The total number of children and youth with intellectual disability/developmental disabilities living in congregate care settings decreased from 90,942 in 1977 to 23,870 in 1997 and 20,753 in 2009 (see Figure 1). The proportion of people with intellectual disability/developmental disabilities in congregate care settings who were 21 years or younger dropped from 37% to 5% during those years (see Figure 1). Between 1997 and 2009 (the target period for this Healthy People 2010 objective), the number of children ages birth to 14 years living in congregate care settings declined from 8,651 to 4,342, but the number of youth ages 15 to 21 years living in those settings increased slightly from 15,219 to 16,420. The total number of children ages 0 to 14 years in congregate settings declined by 42% between 1997 and 2009. Although the goal of having zero children with intellectual disability/developmental disabilities living in congregate care settings by 2010 was not met, states have reduced the number of children 14 years and younger living in congregate settings.
Between 1987 and 1997 and between 1997 and 2005, the proportion of all congregate setting residents who were children or youth decreased at a rate of 0.7% per year. Between 2005 and 2009, the proportion of all congregate care residents who were children or youth declined at a rate of 1.3% per year.
States varied substantially in the extent to which they made progress toward meeting the Healthy People 2010 objective (see Table 1). Although there was still an estimated 4,305 children ages 0 to 14 years in congregate settings nationally in 2009, 6 states (CO, ID, MD, TN, WI, and WY) reported housing no children ages 0 to 14 years in congregate settings that year. In 2009, 7 states (CO, HI, ID, MD, NM, TN, and WY) reported fewer than 20 children ages 0 to18 years in congregate settings. In 2009, 11 states (HI, ID, KS, MD, MA, NM, OH, PA, RI, TN, and VA) reported that fewer than 2% of all people with intellectual disability/developmental disabilities living in congregate settings were 21 years or younger.
Between 1997 and 2009, 33 states reported reductions in the number of children ages 0 to 14 years living in congregate settings. Between 1997 and 2009, 19 states reported reductions in the number of children and youth ages 15 to 21 years living in congregate settings; whereas 22 states reported increases for this age group. The total number of children and youth ages 15 to 21 years in congregate settings increased 24% between 1997 and 2009.
Although the United States did not accomplish its Healthy People 2010 Objective 6.7b, many states have made substantial progress toward this objective with regard to children ages 0 to 14 years, and 6 states have achieved this objective for that age group. Substantial challenges remain with regard to assuring that children with intellectual disability/developmental disabilities ages 15 to 18 years have an opportunity to mature in a family setting as was envisioned in the Healthy People 2010 objective.
(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, November). Healthy People 2010: Understanding and improving health (2nd ed.). Washington, DC: U.S. Government Printing Office. Retrieved from http://healthypeople.gov/2020/topicsobjectives2020/objectivelist.aspx?topicid=9
Preparation of this report was supported by Grant 90D0217/01 from the Administration on Developmental Disabilities 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, Research and Training Center on Community Living.
Edited by K. Charlie Lakin and David Braddock