The Dominant Trend: Living with Family Caregivers
For decades, the default housing solution for adults with intellectual and developmental disabilities (I/DD) has been the family home. Statistics consistently show that a significant majority—often estimated between 75% and 80%—live with parents, siblings, or other relatives. This arrangement is rooted in a history of love, dedication, and, at times, a lack of viable alternatives. The family home provides a foundation of stability, emotional security, and deep personal connection that is difficult to replicate.
However, this model faces a looming crisis. Over a million households in the U.S. are headed by a caregiver aged 60 or older who is caring for an adult with a disability. As these caregivers age, their ability to provide the necessary physical and financial support diminishes. This demographic shift has created an urgent need for sustainable, long-term housing solutions that can support individuals throughout their entire lifespan.
The Shift from Institutionalization to Community Living
It's crucial to understand the historical context. For much of the 20th century, large, state-run institutions were the primary option for individuals whose families could not care for them. These facilities often provided substandard care and isolated residents from society. The disability rights movement, culminating in landmark legal decisions like Olmstead v. L.C. (1999), established the right of individuals with disabilities to receive services in the most integrated setting appropriate to their needs. This ruling accelerated the closure of institutions and fueled the growth of community-based housing options.
Exploring Community-Based Housing Models
Today, a diverse range of community-based living arrangements exists, each designed to provide a different balance of independence and support. These models are typically funded through a combination of private funds, Social Security income, and, most critically, Medicaid Home and Community-Based Services (HCBS) waivers.
1. Group Homes
A group home is a residential home in a community setting where a small number of unrelated people with disabilities live together. Key features include:
- 24/7 Support: Staff are typically on-site around the clock to assist with daily living activities, medication management, and transportation.
- Shared Living: Residents have their own bedroom but share common areas like the kitchen, living room, and bathrooms.
- Structured Environment: The setting is often highly structured, providing routine and consistent support, which can be beneficial for individuals with significant needs.
2. Supported Living Arrangements (SLA)
Supported living, also known as supported independent living (SIL), is a model that prioritizes individual autonomy. In this arrangement, an individual (or a couple of roommates) leases their own apartment or house in the community. Support services are then brought to them as needed.
- Separation of Housing and Services: The individual holds the lease, giving them control over their home. They choose a provider agency to deliver support, which can range from a few hours a week to 24/7 care.
- Flexibility: Support is tailored to the individual's specific needs and can be adjusted over time.
- Full Community Integration: This model allows for maximum independence and integration into the broader community.
3. Host Homes / Shared Living
In a host home or shared living model, an adult with a disability lives in a private family home with a non-relative who is a paid caregiver. This can be an individual, a couple, or a family with children. It offers a more intimate, family-style environment compared to a group home while still providing consistent support.
4. Intentional Communities
Intentional communities are planned residential communities designed to integrate people with and without disabilities. These communities, sometimes called "disability-friendly neighborhoods," focus on creating a supportive and inclusive social fabric. They might include shared amenities, organized social activities, and a culture of mutual support among all residents.
Comparison of Common Housing Models
Choosing the right housing model depends on the individual's needs, preferences, and funding availability. Here's a comparison of the three most common options:
| Feature | Family Home | Group Home | Supported Living (SLA) |
|---|---|---|---|
| Level of Independence | Varies; often dependent on family dynamics. | Moderate; structured environment with staff oversight. | High; individual has control over their home and schedule. |
| Support Provided | Provided by family; can lead to caregiver burnout. | 24/7 on-site staff for all residents. | Customized support based on individual needs; can be 24/7. |
| Social Setting | Limited to family and existing social circles. | Socialization with a small group of peers. | Full integration with the broader community. |
| Cost & Funding | Primarily private; can strain family finances. | Funded by Medicaid waivers, private pay, SSI. | Funded by Medicaid waivers, private pay, SSI; rent paid separately. |
| Long-Term Stability | Uncertain; depends on the health of aging caregivers. | High; professionally managed and staffed. | High; individual has tenant rights and controls services. |
The Critical Role of Future Planning
The transition from living with family to a community-based setting requires deliberate, long-term planning. This process, often called person-centered planning, focuses on the individual's goals and desires for their future. Families should begin this process early, exploring local housing options, understanding funding mechanisms, and creating legal and financial plans to ensure their loved one is supported after they are gone. Authoritative resources like The Arc's Center for Future Planning® provide invaluable guidance for families navigating this complex journey.
Conclusion
While the majority of adults with developmental disabilities still live at home with family, the landscape of disability housing is evolving. Driven by a commitment to community integration and individual choice, a variety of supported living models have become the standard for long-term care. The challenge ahead lies in expanding the availability of these options, securing sustainable funding through mechanisms like HCBS waivers, and empowering individuals and families to plan for a future that is both secure and self-directed. The goal is no longer just to provide housing, but to build homes where individuals can thrive as valued members of their communities.
