Developmental disability (DD) refers to a severe, chronic disability attributable to a mental or physical impairment, or a combination of both. To be classified as DD, the condition must manifest before age 22, be likely to continue indefinitely, and result in substantial functional limitations in three or more major life activities. These activities include self-care, learning, mobility, language, self-direction, economic self-sufficiency, and independent living. Residential settings for adults with these conditions are highly varied and depend heavily on the individual’s support needs and resource availability. The question of where the majority of this population resides reveals a complex landscape of family care, state-funded programs, and personal choice.
The Dominance of Family Homes
The single most common residential setting for adults with developmental disabilities is the family home, where the individual lives with parents, siblings, or other relatives. Data from the Residential Information Systems Project (RISP) indicates that 61% of adults with intellectual and developmental disabilities (IDD) who receive long-term services and supports reside with a family member. This arrangement represents the primary, often informal, care network for this population across the United States.
Care in the family home is typically unpaid, relying on the dedication of family caregivers who provide daily support without formal compensation or professional training. Although this setting provides comfort and emotional connection, the financial and emotional burden on families is substantial.
The reliance on family care creates a major challenge known as the “aging caregiver crisis,” as one in three adults with IDD lives with a family member over the age of 60. This situation means a large number of individuals with DD are likely to outlive their primary caregivers, creating uncertainty about their future living situation. For many families, the current arrangement is not a choice but the only available option due to limited access to public funding and community-based alternatives.
Community-Based Supported Living
For adults with developmental disabilities who move out of the family home, community-based supported living represents the next largest category of residence. These settings are integrated into typical neighborhoods and characterized by personalized support designed to maximize independence and community participation. Various models exist, funded primarily through state and federal mechanisms, such as Medicaid Home and Community-Based Services (HCBS) waivers.
Small group homes are a common type of community residence, typically shared by six or fewer individuals with DD, where paid staff provide 24-hour supervision and assistance with daily activities. Approximately 15% of individuals receiving funded supports lived in these small group settings in 2020. Another model, the host or foster family arrangement, involves an individual with DD living in the private home of a paid non-relative, accounting for about 5% of the supported population.
The HCBS waiver program is the foremost funding source for these non-institutional services, enabling states to offer supports like personal care, skill-building, and therapies in a person’s home or community. This shift in funding priority reflects a national policy goal to ensure people with DD have the right to live in the least restrictive setting possible. While the goal is community integration, the system faces challenges, including long waiting lists for services and a persistent shortage of direct support professionals.
Independent Living Arrangements
A smaller but growing segment of the adult DD population lives in independent arrangements, such as in an apartment alone or with a roommate, receiving minimal or intermittent residential support. About 11% of individuals receiving funded support live in their own home, which they own or rent, and manage with a high degree of autonomy. This arrangement typically involves non-residential supports, rather than live-in or 24/7 paid residential staff.
Independence is maintained through intermittent services that target specific needs, such as employment coaching, managing finances, or occasional personal care assistance. These individuals often have milder intellectual disabilities or developmental disabilities that primarily affect areas other than cognitive function, such as cerebral palsy. The ability to live independently depends significantly on the availability and coordination of these essential non-residential services.
The Status of Institutional Settings
Large, state-operated facilities and institutions, once the dominant residential setting for people with developmental disabilities, now house a very small, specific population. This dramatic decline is the result of the decades-long deinstitutionalization movement, which gained legal momentum from the 1999 Supreme Court Olmstead v. L.C. decision. This ruling affirmed that unjustified isolation of people with disabilities constitutes discrimination under the Americans with Disabilities Act.
The number of people residing in state-run institutions has plummeted by over 90% since the late 1960s. Today, only about 1% of the total population receiving public services for DD resides in these settings. The remaining residents often have extremely complex medical conditions or severe behavioral support needs that are difficult to manage in smaller community residences.
While the trend is toward closing all state-run institutions, a small number of people still reside in facilities with seven or more residents. This includes large Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICF/IID), nursing homes, or psychiatric facilities. Policy continues to favor community integration, recognizing that people with DD thrive in smaller, personalized, and community-based environments.