Four basic residential options have been defined to describe the places where people with intellectual and developmental disabilities (ID/DD) live while receiving services and support under the auspices of state-managed programs for persons with ID/DD. These include the following:
1. Congregate care. A residence owned, rented or managed by the residential services provider, or the provider's agent, to provide housing for persons with ID/DD in which staff provide care, instruction, supervision, and other support for residents with ID/ DD (including certified Intermediate Care Facilities for People with Mental Retardation [ICF-MR]).
2. Host family/foster care. A home owned or rented by an individual or family in which they live and provide care and support for one or more unrelated persons with ID/DD.
3. Own home. A home owned or rented by one or more persons with ID/DD as their personal home in which personal assistance, instruction, supervision, and other support are provided to them as needed.
4. Family home. A home owned or rented by a family member of a person with ID/DD in which the individual with ID/DD resides and receives care, instruction, supervision, and other support from persons other than family members and/or from family members who are paid.
Distributions of service recipients by these four basic residential circumstances were reported by states for June 30, 1996, and June 30, 2006, and are shown in Figure 1. Congregate care settings have been further broken down into places with six or fewer and seven or more residents.
As shown during the 1996–2006 decade, the total number of persons with ID/DD reported to receive services and supports in state programs increased from an estimated 612,928 to 984,662 (a 60.6% increase). Of the estimated 371,734-person increase, 75.5% was accounted for by growth in the number of persons reported to be receiving services and supports while living with family members. The increase in Medicaid Home and Community Based Service recipients living with family members was equal to 60.2% of the total increase in people receiving services while living with family members. People receiving services while living in their own homes accounted for another 15.5% of the growth. The total number of persons reported to reside in congregate care settings changed relatively little (9.1%) between 1996 and 2006, but there was a notable shift from larger congregate care settings of seven or more residents to settings of six or fewer residents. In June 1996, 59.8% of 252,832 residents in congregate care settings lived in settings of seven or more residents; in June 2006, 43.1% of 275,954 residents of congregate care settings lived in settings of seven or more residents.
Table 1 provides a breakdown by number and percentage of service recipients with ID/DD living in various residential circumstances in June 2006. It also provides the total number of individuals with ID/DD receiving services and supports, indexed per 100,000 persons in each state's populations. Most states reported between one third and two thirds of all service recipients to be living with family members. States varied greatly in the number of people supported per 100,000 in their populations, with 11 states reporting more than 400 per 100,000 and 14 states reporting fewer than 200 per 100,000. When comparing states with regard to services and supports provided to individuals living with family members, it is important to recognize that among the states, there are some variations among the states in the types of services and supports provided under the auspices of state-managed programs for persons with ID/DD. This is particularly true with respect to services provided to children.
(Sources: Prouty, R., & Lakin, K. C. (1997). Residential services for persons with developmental disabilities: Status and trends through 1996. Minneapolis: University of Minnesota, Research and Training Center on Community Living; and Prouty, R., Smith, G., & Lakin, KC. (2007). Residential services for persons with developmental disabilities: Status and trends through 2006. Minneapolis: University of Minnesota, Research and Training Center on Community Living.)