The 1994/1995 National Health Interview Survey on Disability (NHIS-D) offered a rare opportunity to estimate the number of people with intellectual or developmental disabilities (IDD) in the noninstitutionalized U.S. civilian population (see Larson et al., 2001). Analyses of that data set were combined with the annual state-by-state data collection from the Residential Information Systems Project (RISP) to estimate a combined prevalence of intellectual or developmental disabilities of 14.9 per 1,000 (1.49%) in 1995. Of the estimated 4.25 million persons with intellectual or developmental disabilities in the United States, 334,430 persons (7.8% of the total) lived by themselves or with an unrelated person such as a roommate or partner (Larson, Doljanac, & Lakin, 2005). An additional 261,260 (6.1%) reported being married and living with a spouse. An estimated 3,291,167 persons with intellectual or developmental disabilities lived with parents, siblings, or other relatives (77.5%). The remaining individuals lived in congregate-care settings (266,247; 6.2%) or in nursing homes or state institutions (95,911; 2.3%). Subsequent annual NHIS surveys have not included the variables needed to identify persons with intellectual or developmental disabilities reliably, leaving us without a current estimate of prevalence of intellectual or developmental disabilities or information about living arrangements for those persons not in institutional or other congregate settings.

Since 1998, RISP has collected annual data from state agencies about the number of service recipients with intellectual or developmental disabilities living in homes they own or lease, and about the number of service recipients living in the homes of family members. In 1998 an estimated 325,650 people (48.3% of the total identified as service recipients by the IDD system) were receiving services while living in the home of a family member (see Table 1). An additional 285,725 (42.4%) lived in residential facilities owned, rented, or managed by an agency that staffed the home; in host family– family foster homes; or in other residences not owned by the person with the disability. Only 62,669 persons (9.3%) lived in homes of their own (places owned or leased by a person with intellectual or developmental disabilities).

Table 1

Living Arrangements for Service Recipients With Intellectual or Developmental Disabilities, 1998 to 2007

Living Arrangements for Service Recipients With Intellectual or Developmental Disabilities, 1998 to 2007
Living Arrangements for Service Recipients With Intellectual or Developmental Disabilities, 1998 to 2007

Between 1998 and 2007, the total number of persons with intellectual or developmental disabilities reported to be receiving supports from the IDD system increased from 674,044 to 990,266 (an increase of 31.9%; see Figure 1). The number of persons receiving supports in “other residential” settings grew 11.3% during this period, whereas the number receiving supports while living with family members grew 41.1% and the number receiving supports while living in homes of their own grew 45.8% (from 62,669 to 115,659). The proportion of persons with intellectual or developmental disabilities receiving supports who lived in homes of their own increased from 9.3% to 11.7%.

Figure 1

Living arrangements for service recipients with intellectual or developmental disabilities, 1998– 2007

Figure 1

Living arrangements for service recipients with intellectual or developmental disabilities, 1998– 2007

Persons living in homes of their own received supports from a variety of funding sources, the most common of which was the Medicaid Home and Community-Based Services (HCBS) program. Between 1998 and 2007, the number of persons with intellectual or developmental disabilities living in homes of their own who received supports financed by the Medicaid HCBS program grew from 35,958 to 81,380 (an increase of 55.8%), whereas the number of people living in homes of their own whose services were funded by other state or local sources increased from 26,711 to 34,279 (an increase of 22.1%). The proportion of service recipients who were living in homes of their own with supports funded by Medicaid HCBS increased from 57% in 1998 to 70% in 2007.

There were substantial state-by-state differences in the total number of service recipients with intellectual or developmental disabilities living in homes of their own between 1998 and 2007 and in whether their services were funded by the HCBS waiver program (see Table 2). The total number of service recipients living in homes of their own declined in 8 states (DE, WY, AR, CT, MN, AL, NE, and SD) between 1998 and 2007. Conversely, 9 states reported that the number of service recipients living in homes of their own nearly doubled (growing 80% or more in MD, NY, RI, KY, NC, GA, and DC between 1998 and 2007). In 1998, 16 states reported that fewer than half of all service recipients living in their own homes received services funded by Medicaid HCBS compared with only 10 states in 2007.

Table 2

State Changes in Service Recipients With Intellectual or Developmental Disabilities Living in Their Own Homes, 1998 to 2007

State Changes in Service Recipients With Intellectual or Developmental Disabilities Living in Their Own Homes, 1998 to 2007
State Changes in Service Recipients With Intellectual or Developmental Disabilities Living in Their Own Homes, 1998 to 2007

In 1995, using the NHIS-D data combined with the RISP data, we estimated that 595,690 people with intellectual or developmental disabilities lived alone or with a spouse, considerably more than the 62,669 people with intellectual or developmental disabilities reported to be receiving services while living in homes they owned or rented in 1998 or the 115,659 such persons in 2007. This difference exists because the NHIS surveys a sample drawn from all persons in the civilian, noninstitutionalized U.S. population, not only persons who receive services under the auspices of state developmental disabilities program agencies.

Since 1995, we have not been able to estimate the size of the U.S. population with intellectual or developmental disabilities who live in their own homes, with spouses, or in family homes and are not receiving services from state developmental disabilities service systems. However, it is clear from the available data that the number of service recipients with intellectual or developmental disabilities who live in homes of their own continues to increase steadily, as does the participation of the federal Medicaid program in financing their support.

(Sources: Larson, S. A., Doljanac, R., & Lakin, K. C. (2005). United States living arrangements of persons with intellectual and/or developmental disabilities in 1995. Journal of Intellectual and Developmental Disability, 30, 248–251; Larson, S. A., Lakin, K. C., Anderson, L., Kwak, N., Lee, J. H., & Anderson, D. (2001). Prevalence of mental retardation and developmental disabilities: Estimates from the 1994/1995 National Health Interview Survey Disability Supplements. American Journal on Mental Retardation, 106, 231–252; Prouty, R. W., Alba, K., & Lakin, K. C. (Eds.). (2008). Residential services for persons with developmental disabilities: Status and trends through 2007. Minneapolis: University of Minnesota, Research and Training Center on Community Living.)

Table 2

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