Impact Feature Issue on Children with Disabilities in the Child Welfare System

The Adoption Assistance and Child Welfare Act of 1980 (P.L. 96-272) made permanency planning national policy. This policy was designed to respond to the sense of Congress that too many children and youth were being placed outside their family homes; that too many once placed never returned home; and that too many were growing up without the social, cultural and developmental benefits of family living. At its foundation permanency planning is a commitment to honoring the important role of family life in child development.

Within developmental disability service systems permanency planning for children and youth with disabilities has been promoted for the social, cultural, and developmental benefits of family life, and as a means of overcoming an unfortunate history in which out-of-home placements for children with intellectual and/or developmental disabilities (ID/DD) were common and widely viewed as beneficial to both the family and child. These placements occurred through both the developmental disability and child welfare service systems.

Beginning in the mid-1970s a number of social reforms began to give substance to the idea that children with disabilities, like their non-disabled peers, deserved the benefits of family life. These reforms, which took foothold primarily within the developmental disability service system, included Supplemental Security Income (SSI) for low-income families of children with disabilities (1974); free and appropriate educational programs for children with disabilities in their own communities (1976); a range of state family support and subsidy programs with respite care, personal care, and other services and cash assistance; and a rapidly growing number of children, youth and families supported within Medicaid Home and Community Based Services (1981).

A quarter century after its introduction as national policy, permanency planning remained an important concept in the formulation of Healthy People 2010, a national initiative to establish goals and specific objectives with regard to health in the United States. The overarching goals of Healthy People 2010 are: “1) increasing the quantity and quality of life for Americans, and 2) eliminating the disparities in health among us” (National Center on Birth Defects and Developmental Disabilities, 2001, p. 1). Among the 13 objectives established for national performance in effective support of persons with disabilities is “Objective 6.7: Reduce the number of people with disabilities in congregate care facilities, consistent with permanency planning principles” (p. 89). The specific measurable national objective established around permanency planning was “Objective 6.7b: Reduce to zero the number of children aged 17 years and younger living in congregate care facilities” (p. 89). Congregate care facilities were defined as “settings in which children or adults with disabilities live in a group of 4 or more people with disabilities, in order to receive needed supports and services” (p. 89).

In an effort to establish the national performance related to Objective 6.7b, in June 2005 state developmental disabilities program agencies were requested to report the numbers of children (0-14 years), youth (15-18), and young adults (18-21 years) with ID/DD in “out-of-home residential placements.” Out-of-home residential placements were defined as individuals receiving residential supports who are not living with parents or other relatives. State reports included children placed out-of-home by developmental disabilities programs, and did not necessarily include children with ID/DD placed through the child welfare system.

Between June 1977 and June 2005 children and youth with ID/DD in out-of-home placements through the developmental disability service system decreased from an estimated 90,942 (36.7% of all persons in residential settings) to an estimated 26,395 (6.2% of all persons in residential settings). To be sure these changes were the product of important national and state commitment to families of children with ID/DD. Braddock et al. (2005) report that $1.98 billion in service and subsidy expenditures were provided for various family supports and cash assistances in FY 2004, excluding SSI and Medicaid health benefits. While such statistics give reason for satisfaction, the number of children in congregate care settings far exceeds the national objective and the rate of decrease appears to have slowed substantially in recent years. In 1997, an estimated 26,028 persons with ID/DD 21 years or younger received out-of-home residential supports (.98 per 1000 persons 21 and younger in the general population); in 2005 the number was 26,395 (about .90 per 1000 persons 21 years and younger). Along with the modest decrease in the number of out-of-home placements indexed for population, there was also a decrease in the proportion of persons 21 and younger among all persons receiving out-of-home residential services for persons with ID/DD (from 7.6% in 1997 to 6.2% in 2005). The trend toward decreasing numbers of children 14 years and younger continued between 1997-2005 (from an estimated 10,243 to 7,926), but was offset by an increase in the number of youth 15-21 in out-of-home settings.

In general, then, it appears that within the developmental disability service delivery system great progress has been made in the past three decades in reducing out-of-home placements of children and youth with ID/DD, and, unfortunately, this progress has substantially slowed or halted in recent years, depending on the measure selected. The nation clearly has considerable distance to go in accomplishing its national permanency planning objective for young people with disabilities, especially in light of the data from the U.S. Children’s Bureau reporting that child welfare agencies have placed children with disabilities more than twice as often in foster care than children without disabilities (U.S. Department of Health and Human Services, 2005a), and that there is a scarcity of appropriate placement options through the child welfare system for children with ID/DD (U.S. Department of Health and Human Services, 2005b).