As of June 30, 2006, there were an estimated 224,264 individuals with intellectual and developmental disabilities (ID/DD) receiving Medicaid Home and Community Based Services (HCBS) while living with their parents or with other family members. This estimate is based on reports of the place of residence of HCBS recipients provided by 47 states representing 448,864 of 479,196 (93.7%) of all HCBS recipients with ID/DD on June 30, 2006. The steadily growing number and proportion of HCBS recipients living in their family homes have been evident for more than a decade but have been accelerating in recent years. As shown in Figure 1, on June 30, 1992, an estimated 13,200 of 62,462 HCBS recipients lived with family members. On June 30, 1999, 82,264 persons were receiving HCBS while living in the same home as other family members. By June 2006, the number of persons living with family members while receiving Medicaid HCBS had increased to 224,264 persons. Not only was the 2006 total number of persons with ID/ DD receiving HCBS while living with family members 17 times greater than it was just 14 years earlier, their proportion among all HCBS recipients also grew steadily, from 21.1% in 1992 to 31.4% in 1999 to 46.8% in 2006. Between 1999 and 2006, 65.4% of the increase of 217,266 in total HCBS recipients (from 261,930 to 479,196 persons) was accounted for by the increase of 142,000 people living with family members. As a proportion of all participants in the Medicaid HCBS and ICF/MR programs for persons with ID/DD, persons living with family members increased from 6.3% in 1992 to 21.7% in 1999 to 38.8% in 2006.
Table 1 presents state-by-state statistics on participants in Medicaid HCBS and ICF/MR programs with ID/DD who were living with family members on June 30, 2006. It shows general consistency in direction with national trends, but to different degrees in different states. Although 46.8% of all HCBS recipients in June 2006 were living with family members, 8 states reported less than 15% living with family members, and 6 states reported more than 60%. Including both HCBS and ICF/ MR service recipients with ID/DD showed the same general tendencies, although a somewhat lower total proportion (38.8%) living with family members. Only 12 states reported less than 20% of their total Medicaid HCBS and ICF/MR recipients living with family members. Between June 1999 and June 2006, all but 4 states reported increases in the number of HCBS recipients living with family members, with the largest numerical increase being in California (an increase of 28,731 persons). In 2006, California was among only 4 states with a majority of the combined total of HCBS and ICF/MR recipients living with family members. Its 41,359 HCBS recipients living with family members made up 18.4% of the estimated national total of 224,264.
A notable policy trend in the provision of Medicaid HCBS to people with ID/DD living with family members is the growth of Medicaid “Supports Waiver” programs. Although HCBS Supports Waivers limit total expenditures to amounts that are typically considerably less, on average, than is provided in the regular HCBS program, it also provides greater flexibility to the individuals and families enrolled. The cost savings associated with the Supports Waivers derive primarily from the unpaid services and supports provided by the family members with whom people with ID/DD live. A recent comprehensive study of Supports Waivers was conducted by the Human Services Research Institute (Smith, Agosta, & Fortune, 2007). Smith et al. found that 17 states with Supports Waivers in 2006 served 27.6% of all their HCBS recipients in Supports Waiver programs with 9.3% of their HCBS expenditures. Clearly, the increasing reliance on family-based living in the support for Medicaid service recipients demands much more attention to the characteristics and needs of the individuals and families supported, the adequacy of the supports received, and the short- and long-term outcomes for individuals, families, and HCBS programs.
Sources: Prouty, R., Smith, G., & Lakin, K. C. (Eds.). (2007). Residential services for persons with developmental disabilities: Status and trends through 2006. Minneapolis: University of Minnesota Research and Training Center on Community Living; and Smith, G., Agosta, J., & Fortune, J. (2007). Gauging the use of HCBS supports waivers for people with intellectual and developmental disabilities. Research Triangle Park, NC: RTI International.