Medicaid is the primary program for financing residential and other long-term care services for persons with intellectual and developmental disabilities (ID/DD). Medicaid provides federal reimbursement of between 50% and 78% of each state's expenditures for long-term care, varying according to the per capita income in the state. During the decade between June 1992 and June 2002, there was rapid growth in Medicaid long-term care programs for persons with ID/DD. During that period combined Medicaid Home and Community Based “Waiver” Services (HCBS), Intermediate Care Facility (ICF/MR) and Nursing Facility (NF) fiscal year (FY) expenditures for persons with ID/DD increased from about $12.4 billion to about $25.6 billion, and mid-year service recipients increased from about 245,700 to 524,000 persons. Figure 1 shows the distribution of Medicaid long-term care recipients with ID/DD in the United States by type of living arrangement in mid-year 1992 and 2002. The types of arrangements (with sources of Medicaid financing) include nursing facilities, state and nonstate institutions of 16 or more residents (ICF/MR), community residential facilities with 15 or fewer residents (HCBS or ICF/MR), host or foster family (HCBS), family home (HCBS), or own home (HCBS). In compiling the statistics in Figure 1, we used reports on all ICF/MR and nursing facility service recipients, but only on 62.5% of HCBS recipients in June 1992 and on 70.8% of the HCBS recipients in June 2002. We assumed for both years that the living arrangements for HCBS recipients for whom living arrangements were not reported were distributed in the same proportions as for those for whom they were reported.
The overall growth of 116% in Medicaid long-term care recipients between 1992 and 2002 was all the more notable given that there was a decrease of about 38,300 persons with ID/DD living in state and non-state institutions and nursing facilities. In addition to the four-fold increase in the number of Medicaid long-term care recipients in community settings between 1992 and 2002 (from 104,700 to 420,300), major growth occurred in each of four primary categories of community living arrangements. The number of Medicaid long-term care recipients living in community residential facilities (places operated by agencies) increased by about 121% to 173,100; host (or foster) family residents increased by more than 350% to 32,600; and, most notably, people receiving services in family homes or in their own homes increased by about 10-fold, to an estimated 149,500 and 65,100, respectively.
Table 1 presents the 2002 distributions of Medicaid long-term care recipients in each state by type of living arrangements. Proportional estimates have been made for all HCBS-financed long-term care recipients in states reporting living arrangements for more than 70%, but less than 100% of their HCBS recipients. States reporting living arrangements for less than 70% of HCBS recipients are indicated with “NA” in the distribution of Medicaid long-term care recipients in the community living arrangements. Table 1 shows the substantial variations among states in the use of Medicaid long-term care options to provide institutional versus community services and within the community to support people in different living arrangements. For example, in 10 states more than one third of all Medicaid long-term care recipients were in residential or nursing institutions, whereas in 14 other states, more than one third of Medicaid long-term care recipients were living with parents or other family members.
Sources: Mangen, T., Blake, E., Prouty, R., & Lakin, K.C. (1993). Residential services for persons with mental retardation and related conditions: Status and trends through 1992. Minneapolis: University of Minnesota, Research and Training Center on Community Living; Prouty, R., Smith, G., & Lakin, K. C (Eds.). (2003). Residential services for persons with developmental disabilities: Status and trends through 2002. Minneapolis: University of Minnesota, Research and Training Center on Community Living.