Statistics on Adults with Disabilities Living with Parents or Family

Statistics vary by disability type, age group, and source, but a significant portion of adults with disabilities, particularly those with intellectual and developmental disabilities (I/DD), live with parents or family members. Below is a breakdown by key categories.

Intellectual and Developmental Disabilities (I/DD)

An estimated 7.3 to 8.38 million people in the US have I/DD. Among adults with I/DD:

• Approximately 75-80% live with their parents, family members, or aging caregivers. This figure is commonly cited across sources, including reports from The Arc, Disability Scoop, and state-specific analyses (e.g., 75% in Delaware, where nearly 30% of caregivers are over age 60).
• In a survey of 599 adults with I/DD (2021-2024), 40% lived with children, parents, or extended family overall; this rose to 60% among those with Medicaid.
• Co-residence rates decrease with age: 51.4% during midlife (ages ~40-60) and 38.6% in early old age (ages ~60+).
• Nearly 1 million households include adults with I/DD living with and supported by an aging caregiver.
• Among older adults with intellectual disabilities (ages 40+), about 75% reside with families.

The 75% figure often traces back to studies like Williamson & Perkins (2014) and reports from organizations such as The Arc and the University of Kansas State of the States project.

Autism Spectrum Disorder

For adults with autism (a subset of I/DD):

• 87% of young adults (early 20s) on the autism spectrum live with their parents. This comes from a 2015 report by the A.J. Drexel Autism Institute.
• Only 19% of young adults with autism have lived independently (without supervision) in their early 20s.

Housing and Living Arrangements

A major concern is housing instability. Many adults with IDD live with aging caregivers (estimates suggest hundreds of thousands of caregivers over 60 nationwide provide home-based care). When the caregiver dies:

• Without a plan, individuals may enter institutional settings (e.g., nursing homes or larger facilities), especially if community options are unavailable or waitlists are long. Studies show adults with IDD are significantly more likely to end up institutionalized if no care plan exists.
• Some transition to group homes, supported living, or other community-based options funded by Medicaid waivers (e.g., Home and Community-Based Services). However, these often involve long waitlists—sometimes years—and shortages of spots.
• In crises, temporary placements (e.g., respite care or emergency housing) may occur while permanent arrangements are sought.
• A severe housing crisis exists nationwide for people with IDD, with limited affordable, accessible options. This puts many at risk of homelessness, “worst-case” housing (overburdened or substandard), or reliance on overburdened systems.
• In some cases, siblings, extended family, or other relatives step in, but shrinking family sizes and other commitments make this less common.

Advocates highlight that poor planning increases the risk of institutionalization, even as the U.S. has moved toward deinstitutionalization since the 1970s–80s.

Financial and Support Systems

• Individuals often rely on government benefits like Supplemental Security Income (SSI), Social Security Disability Insurance (SSDI), and Medicaid for basics like housing, healthcare, and daily needs. These may not fully cover costs without supplemental planning.
• If no special needs trust or similar vehicle exists, inheritance or assets could affect eligibility for means-tested benefits (e.g., Medicaid might seek reimbursement).
• Without legal safeguards (e.g., guardianship, powers of attorney, or advance directives), decision-making can become complicated, leading to court involvement or state guardianship.

Role of Planning

Many families delay planning due to emotional stress, financial barriers, or daily demands—surveys show fewer than half of parents of children/adults with disabilities create long-term care plans. Proactive steps include:

• Establishing special needs trusts to protect assets.
• Setting up guardianship or supported decision-making.
• Applying for Medicaid waivers early to reduce wait times.
• Documenting preferences for housing, medical care, and end-of-life wishes.

Organizations like The Arc emphasize advance planning to avoid crises. Some states offer priority access or supports for aging caregivers to ease transitions.

In summary, while systems like Medicaid provide a safety net, gaps in housing, staffing shortages, and waitlists mean outcomes can range from stable community living (with good planning) to institutional placement or instability (without it). The “time bomb” of aging caregivers underscores the need for better resources and preparation to support dignity and independence. If this relates to a specific situation, consulting local disability advocacy groups, legal experts in special needs planning, or state agencies can provide tailored guidance.

Risk Factors and Context

Murder-suicide (also known as homicide-suicide) involving parents or caregivers of disabled adults and children is a rare but tragic phenomenon that is becoming more common.

Specific rates for caregivers of disabled individuals are not uniformly tracked nationally, and data often come from targeted studies, media analyses, or violent death reporting systems like the National Violent Death Reporting System (NVDRS). These events are underreported and influenced by factors like caregiver stress, mental health issues, and access to firearms (used in ~88% of cases).

Common precipitants include caregiver burnout, mental illness (e.g., depression in 50% of cases), financial strain, and lack of support. For disabled individuals, abuse/neglect is a key trigger (27–38% of homicides). Males perpetrate ~75–91% of cases, often using firearms. Prevention focuses on supporting caregivers through mental health services, respite care, and early intervention. Data gaps exist, especially for adults, with calls for better tracking.