Developmental disabilities (DD) are conditions involving severe, chronic limitations in physical or mental function that manifest before age 22 and require extensive, individualized support. For adults with DD, residential settings depend heavily on their support needs and the availability of state-funded resources. The housing landscape ranges from living in a family’s home to highly structured residential centers. Over the past few decades, there has been a significant movement shifting the focus from large institutional care to smaller, community-integrated living options.
Living with Family and Informal Supports
The most common residential setting for adults with developmental disabilities is the family home. Statistics indicate that a large majority, often between 60 and 80 percent of adults with intellectual and developmental disabilities (IDD), reside with a family member, typically an aging parent or guardian. This high percentage highlights the enduring role of informal supports as the primary care system in the United States. In 2020, 61% of individuals receiving long-term services and supports (LTSS) lived in a family home.
This arrangement often continues because of a lack of affordable and accessible formal housing options in the community, alongside the emotional preference for a familiar environment. The reliance on family, however, creates significant challenges as the caregivers themselves age. Approximately one in three adults with IDD lives with a family member who is over 60 years old, meaning the caregiver is often facing their own health and mobility issues.
Aging parents frequently experience stress and financial strain while navigating complex support systems. A major concern is the lack of a clear plan for future care, especially as they worry about what will happen when they can no longer provide support. This situation is compounded by extensive waiting lists for publicly funded residential services, such as those provided through Medicaid Home and Community-Based Services (HCBS) waivers. In 2019, an estimated 194,983 people living with family were waiting for HCBS-funded LTSS, illustrating the shortage of formal support structures.
Community-Based Residential Models
When adults with developmental disabilities transition away from the family home, they most often move into a variety of community-based residential models, which offer varying degrees of autonomy and support. Among the most common are small group homes, which typically house three to six unrelated adults with disabilities. These residences are situated within traditional neighborhoods and are staffed 24 hours a day, seven days a week, providing continuous support and supervision.
Group homes offer a structured environment where residents can learn independent living skills like cooking, budgeting, and community participation. In 2020, about 15% of people with IDD receiving supports lived in these small group settings. This model is largely funded through Medicaid HCBS waivers, which cover the cost of support staff and services. Rent is often paid for by the individual using their Supplemental Security Income (SSI).
Another prominent option is Supported Independent Living (SIL) or Supported Living Arrangements (SLA), which prioritize individual choice and greater independence. In this model, individuals live in their own apartment or home and receive scheduled staff visits rather than 24-hour on-site supervision. The support is highly personalized, focusing on specific needs like managing finances or coordinating medical appointments. Approximately 11% of individuals receiving supports lived in their own home in 2020, reflecting a growing preference for greater autonomy and suitability for those requiring less intensive, consistent assistance.
Specialized and Larger Residential Centers
A smaller, yet significant, portion of the adult population with developmental disabilities lives in larger, specialized residential centers, often due to their complex needs. The most common of these facilities are Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICF/IDD), which are Medicaid-funded settings designed to provide long-term support and comprehensive health or rehabilitative services. These facilities are highly regulated and typically serve individuals with the most severe intellectual disabilities, significant behavioral challenges, or complex medical conditions requiring 24-hour nursing care.
The trend of deinstitutionalization over the last several decades has drastically reduced the number of people living in these larger settings. For example, the number of people residing in large state-run IDD institutions fell significantly between 1967 and 2019. Despite this decline, as of June 2019, about 67,200 people still resided in ICF/IIDs.
In 2020, about 8% of individuals receiving supports lived in IDD facilities of seven or more people, nursing homes, or psychiatric facilities. While federal policy strongly favors community-based care, ICF/IDD facilities remain a necessary option for a small population. These facilities serve individuals whose intensive medical or behavioral support needs exceed the capacity of smaller community-based group homes.