Overview of Current Adult Autism Housing Options
The Autism Society of the San Francisco Bay Area supports the Autism Society's Options Policy, which emphasizes the uniqueness of each individual with autism and the right of each family and individual with autism to learn about and select the options they conclude are most appropriate. We embrace all forms of housing and supports that provide a positive, safe, caring environment for the individual in question. Here we discuss eight community-based ASD housing options that exist in the Bay Area.
THE FAMILY HOME
The majority of young adults with autism remain in the family home for many years before moving into separate housing. Because the state offers less support to ASD adults remaining in the family home with parents, there are unintended disincentives to keeping the child at home.
In-Home Support Services (IHSS) through the county may pay for in-home workers or pay the parents to be IHSS providers themselves at rates varying from $10-12.50/hour, for up to 283 hours a month if Protective Supervision is needed. Independent Living Services (ILS) funded by the Regional Center may be available if warranted to provide life skills training and assistance with some tasks of daily living.
Pros: Proximity of parental supports; cost savings to government; parental oversight of service delivery and monitoring of safety.
Cons: Burden and stress on family caregivers is common; transportation options may be limited; does not prepare the individual to live independently of his/her parents or other family members; not an option for ASD adults whose parents have passed or are no longer capable of care due to aging, ability or health issues.
The majority of young adults with autism remain in the family home for many years before moving into separate housing. Because the state offers less support to ASD adults remaining in the family home with parents, there are unintended disincentives to keeping the child at home.
In-Home Support Services (IHSS) through the county may pay for in-home workers or pay the parents to be IHSS providers themselves at rates varying from $10-12.50/hour, for up to 283 hours a month if Protective Supervision is needed. Independent Living Services (ILS) funded by the Regional Center may be available if warranted to provide life skills training and assistance with some tasks of daily living.
Pros: Proximity of parental supports; cost savings to government; parental oversight of service delivery and monitoring of safety.
Cons: Burden and stress on family caregivers is common; transportation options may be limited; does not prepare the individual to live independently of his/her parents or other family members; not an option for ASD adults whose parents have passed or are no longer capable of care due to aging, ability or health issues.
GROUP HOMES
Also called Community Care Facilities, group homes privately owned single family homes with a for-profit or non-profit operator. They are licensed by the state of California, and typically have three bedrooms, housing up to six developmentally disabled adults, or about 1 to 2 residents per bedroom. Regional Centers pay the operator a monthly rate that covers both housing and staff services. Tenants can attend day programs outside of the group home, funded by Regional Centers.
Based upon the types of services provided and the persons served, each CCF vendored by a regional center is designated one of the following service levels:
Also called Community Care Facilities, group homes privately owned single family homes with a for-profit or non-profit operator. They are licensed by the state of California, and typically have three bedrooms, housing up to six developmentally disabled adults, or about 1 to 2 residents per bedroom. Regional Centers pay the operator a monthly rate that covers both housing and staff services. Tenants can attend day programs outside of the group home, funded by Regional Centers.
Based upon the types of services provided and the persons served, each CCF vendored by a regional center is designated one of the following service levels:
- Service Level 1: Limited care and supervision for persons with self-care skills and no behavior problems. (These are not vendorized by Regional Centers)
- Service Level 2: Care, supervision, and incidental training for persons with some self-care skills and no major behavior problems.
- Service Level 3: Care, supervision, and ongoing training for persons with significant deficits in self-help skills, and/or some limitations in physical coordination and mobility, and/or disruptive or self-injurious behavior.
- Service Level 4: Care, supervision, and professionally supervised training for persons with deficits in self-help skills, and/or severe impairment in physical coordination and mobility, and/or severely disruptive or self-injurious behavior. Service Level 4 is subdivided into Levels 4A through 4I, in which staffing levels are increased to correspond to the escalating severity of disability levels.
Pros: Some families prefer the relatively comprehensive all-in-one services offered by group homes, which often feature structured daily routines, transportation, social opportunities, and recreation/programming; more oversight by state and Regional Centers; must follow strict regulations regarding staffing, care, safety, and reporting, and issues are investigated, documented and available for public review; some owners and staff are often very committed to providing care and see their work as a mission, not just a job;
Cons: Some group homes can be poorly run, with tenants somewhat neglected and essentially excluded from community integration. This model was generally not set up for adults with autism, and new models are needed: owners and staff often reticent to adjust home operations to accommodate behaviors and needs of residents with autism. Lack of staff training specific to autism and individualized planning. Room sharing, close proximity to others, and group planning do not often suit individual needs of those with autism. State pays a very low flat state median rate for cost of care (which varies according to the service level, and when the group home was licensed), rendering it difficult to comply with staffing and other regulations; no cost of living allowance made for geographic location, low pay (minimum wage or just above) impacts availability of qualified staff and a high turnover rate is common; long-term viability is a problem because many group homes are operated for profit, with the residential owner’s retirement built into equity of the home–when home is sold, residents sometimes must move; the joint provision of housing and services can be a problem when the DD client prefers one but not the other; some group homes limit parental involvement, though Regional Centers support parent involvement.
Pictured: The Cypress home in San Jose operated by nonprofit Life Services Alternatives, Inc., houses five young men with mild to moderate developmental disabilities. Despite some successes, some group homes have been highly impacted or have had to close due to inadequate vendor rates that fail to cover rental and staff costs, particularly in the expensive Bay Area, and insufficient supply of properties.
Cons: Some group homes can be poorly run, with tenants somewhat neglected and essentially excluded from community integration. This model was generally not set up for adults with autism, and new models are needed: owners and staff often reticent to adjust home operations to accommodate behaviors and needs of residents with autism. Lack of staff training specific to autism and individualized planning. Room sharing, close proximity to others, and group planning do not often suit individual needs of those with autism. State pays a very low flat state median rate for cost of care (which varies according to the service level, and when the group home was licensed), rendering it difficult to comply with staffing and other regulations; no cost of living allowance made for geographic location, low pay (minimum wage or just above) impacts availability of qualified staff and a high turnover rate is common; long-term viability is a problem because many group homes are operated for profit, with the residential owner’s retirement built into equity of the home–when home is sold, residents sometimes must move; the joint provision of housing and services can be a problem when the DD client prefers one but not the other; some group homes limit parental involvement, though Regional Centers support parent involvement.
Pictured: The Cypress home in San Jose operated by nonprofit Life Services Alternatives, Inc., houses five young men with mild to moderate developmental disabilities. Despite some successes, some group homes have been highly impacted or have had to close due to inadequate vendor rates that fail to cover rental and staff costs, particularly in the expensive Bay Area, and insufficient supply of properties.
CO-OPS
Co-ops are typically single-family homes owned by a landlord, parents or nonprofit where 3 or 4 developmentally disabled tenants live in separate bedrooms but share the living space. Co-ops are unlicensed, DD tenants typically rely on SLS or ILS support. Property management can occur via a parents or a nonprofit such as Housing Choices Coalition or Housing Consortium of the East Bay.
Pros: Good for consumers who can make their own choices about activities and daily living, but need support to carry out choices. Tenants can choose their own support services, unlike in a group home; stronger parental involvement possible. A co-op can be a “legacy home” donated by parents to a nonprofit, with a life estate for the child, plus roommates for cash flow to cover expenses; as a nonprofit it would not be subject to property tax.
Cons: Tenants' quality of life may be impacted by poor supervision and poorly trained direct service providers from some ILS or SLS support agencies; limited support from regional centers; rental cost can be prohibitive unless subsidies are provided; limited availability of co-op properties; requires strong operational supervision, typically by parents or a nonprofit.
Co-ops are typically single-family homes owned by a landlord, parents or nonprofit where 3 or 4 developmentally disabled tenants live in separate bedrooms but share the living space. Co-ops are unlicensed, DD tenants typically rely on SLS or ILS support. Property management can occur via a parents or a nonprofit such as Housing Choices Coalition or Housing Consortium of the East Bay.
Pros: Good for consumers who can make their own choices about activities and daily living, but need support to carry out choices. Tenants can choose their own support services, unlike in a group home; stronger parental involvement possible. A co-op can be a “legacy home” donated by parents to a nonprofit, with a life estate for the child, plus roommates for cash flow to cover expenses; as a nonprofit it would not be subject to property tax.
Cons: Tenants' quality of life may be impacted by poor supervision and poorly trained direct service providers from some ILS or SLS support agencies; limited support from regional centers; rental cost can be prohibitive unless subsidies are provided; limited availability of co-op properties; requires strong operational supervision, typically by parents or a nonprofit.
APARTMENT/RENTAL HOME
An ASD adult can rent a unit with help from a rental subsidy, if available, and receive daily living support from an SLS or ILS agency, funded by a combination of IHSS and Regional Center. Sometimes two or more DD adults can share a unit as roommates with separate or overlapping staff supports. SLS and ILS staffing is typically funded through state funds plus a federal match of Medicaid dollars. Social Security (SSI) is expected to fund the rent, utilities, food and living expenses. However, in the Bay Area, SSI, at roughly $1,000 per month, seldom covers even a quarter of the costs.
Pros: The ASD client retains separate control over housing choice and support staff; good for consumers who can make their own choices about activities and daily living, but need support to carry out choices. Good for consumers who can communicate if they feel mistreated by a support person. Depending on the nature of the SLS agency, the parents can remain involved in aspects of daily living and programming.
Cons: Rental subsidies are scarce, thereby limiting community housing options for those with ASD; most landlords refuse to accept vouchers, even when they are available; managing SLS for an ASD adult can be extremely complex and expensive; some risk of isolation for both caregivers and the client. If consumer is not able to express own choices, choices are left to the support workers to define or interpret for the consumer. Much depends on the skills and commitment of the support staff. More likely that a consumer would spend time alone with one staff, so risk of neglect or abuse may be higher than when living with a larger group and more staff.
Pictured: An ASD tenant with Section 8 or other subsidy may afford an apartment with ILS or SLS support. Unfortunately, most ASD adults are not provided with rental support and are priced out of the market. Below-market rate “affordable housing” units are scant and cannot possibly meet the surging demand for ASD housing. Expansion of rental subsidies for those with exceptional needs such as ASD is imperative.
An ASD adult can rent a unit with help from a rental subsidy, if available, and receive daily living support from an SLS or ILS agency, funded by a combination of IHSS and Regional Center. Sometimes two or more DD adults can share a unit as roommates with separate or overlapping staff supports. SLS and ILS staffing is typically funded through state funds plus a federal match of Medicaid dollars. Social Security (SSI) is expected to fund the rent, utilities, food and living expenses. However, in the Bay Area, SSI, at roughly $1,000 per month, seldom covers even a quarter of the costs.
Pros: The ASD client retains separate control over housing choice and support staff; good for consumers who can make their own choices about activities and daily living, but need support to carry out choices. Good for consumers who can communicate if they feel mistreated by a support person. Depending on the nature of the SLS agency, the parents can remain involved in aspects of daily living and programming.
Cons: Rental subsidies are scarce, thereby limiting community housing options for those with ASD; most landlords refuse to accept vouchers, even when they are available; managing SLS for an ASD adult can be extremely complex and expensive; some risk of isolation for both caregivers and the client. If consumer is not able to express own choices, choices are left to the support workers to define or interpret for the consumer. Much depends on the skills and commitment of the support staff. More likely that a consumer would spend time alone with one staff, so risk of neglect or abuse may be higher than when living with a larger group and more staff.
Pictured: An ASD tenant with Section 8 or other subsidy may afford an apartment with ILS or SLS support. Unfortunately, most ASD adults are not provided with rental support and are priced out of the market. Below-market rate “affordable housing” units are scant and cannot possibly meet the surging demand for ASD housing. Expansion of rental subsidies for those with exceptional needs such as ASD is imperative.
NONPROFIT INTENTIONAL COMMUNITY
Parents of autistic children have become increasingly interested in creating intentional communities modeled loosely on retirement villages or farmsteads that offer not just housing but a community and programming aspect not available in individual apartments or group homes.
Pros: Opportunities for socialization, work and recreation; options for autism-friendly amenities, such as a pool, and design; onsite monitoring; regular maintenance; if owned by a nonprofit, stability of ownership with no or little property tax; a popular option for parents who can no longer provide regular monitoring or supervision; housing and services can be provided separately—Regional Centers can provide ILS or SLS support services.
Cons: Monthly rent can be high; high cost of entry due to site acquisition and construction; complexity of development and permits; difficulty obtaining donations to pay for significant initial costs which can run into the many millions of dollars; some object to the clustering of ASD people in one site.
Pictured: Dozens of nonprofit intentional communities for people with ASD are in development across the country. Sweetwater Spectrum opened several years ago in Sonoma, designed to house 16 adults (four homes with four tenants each), all of whom have their own support staff and day programs separate from the housing element. See sweetwaterspectrum.org.
Parents of autistic children have become increasingly interested in creating intentional communities modeled loosely on retirement villages or farmsteads that offer not just housing but a community and programming aspect not available in individual apartments or group homes.
Pros: Opportunities for socialization, work and recreation; options for autism-friendly amenities, such as a pool, and design; onsite monitoring; regular maintenance; if owned by a nonprofit, stability of ownership with no or little property tax; a popular option for parents who can no longer provide regular monitoring or supervision; housing and services can be provided separately—Regional Centers can provide ILS or SLS support services.
Cons: Monthly rent can be high; high cost of entry due to site acquisition and construction; complexity of development and permits; difficulty obtaining donations to pay for significant initial costs which can run into the many millions of dollars; some object to the clustering of ASD people in one site.
Pictured: Dozens of nonprofit intentional communities for people with ASD are in development across the country. Sweetwater Spectrum opened several years ago in Sonoma, designed to house 16 adults (four homes with four tenants each), all of whom have their own support staff and day programs separate from the housing element. See sweetwaterspectrum.org.
INVESTMENT-BASED INTENTIONAL COMMUNITY
An intentional community can also be privately owned by investors, who may or may not be parents and family members. In this model, the investors pool their funds as an LLC to acquire or build a multifamily property with the specific intention of renting at least a portion of the units to adults with developmental disabilities. The investors earn income through rental payments, which cover mortgage, operations, and maintenance. The LLC does not provide services or supports, which would need to funded separately through the Regional Centers.
Pros: Parents can invest in nearby housing for their ASD children, retaining some control over the money including the option to withdraw, rather than donating it to a nonprofit, which involves many uncertainties. Parents, as owners, remain active in assuring the quality and care of the property. ASD-friendly amenities can be built into project plans.
Cons: Requires a cooperative group of investors and strong, visionary leadership; some object to the clustering of ASD people in one site, though a mix of ASD and standard units is also possible; if Section 8 or other subsidies are unavailable, may be unaffordable to ASD adults.
Pictured: The Peralta Apartments in Fremont provide an example of an investment-based intentional community. Privately owned by an LLC composed of parents, there are ten units with four bedrooms each. The complex is adjacent to the FCSN center, which provides ongoing programming and recreation. See fcsn1996.org.
An intentional community can also be privately owned by investors, who may or may not be parents and family members. In this model, the investors pool their funds as an LLC to acquire or build a multifamily property with the specific intention of renting at least a portion of the units to adults with developmental disabilities. The investors earn income through rental payments, which cover mortgage, operations, and maintenance. The LLC does not provide services or supports, which would need to funded separately through the Regional Centers.
Pros: Parents can invest in nearby housing for their ASD children, retaining some control over the money including the option to withdraw, rather than donating it to a nonprofit, which involves many uncertainties. Parents, as owners, remain active in assuring the quality and care of the property. ASD-friendly amenities can be built into project plans.
Cons: Requires a cooperative group of investors and strong, visionary leadership; some object to the clustering of ASD people in one site, though a mix of ASD and standard units is also possible; if Section 8 or other subsidies are unavailable, may be unaffordable to ASD adults.
Pictured: The Peralta Apartments in Fremont provide an example of an investment-based intentional community. Privately owned by an LLC composed of parents, there are ten units with four bedrooms each. The complex is adjacent to the FCSN center, which provides ongoing programming and recreation. See fcsn1996.org.
FAMILY HOME AGENCY
A Family Home Agency, a nonprofit vendorized by a Regional Center, approves family homes which offer the opportunity for up to two adult individuals with relatively mild developmental disabilities to reside with a family and share in the interaction and responsibilities of being part of a family. The family home arrangement allows the sharing of food, shelter, experience, responsibilities and love. FHAs are responsible for recruiting, training, approving and monitoring family homes. Social service staff employed by the FHA make regular visits to the family home to ensure that necessary services and supports are in place, and that the match between the family and the new family member is viable, and continues to be viable.
FHA and family home services and supports are a new option which enables adults with developmental disabilities to enter into partnerships with families that promote self-determination and interdependence.
Pros: Takes advantage of existing real estate, possibility of nurturing and supportive home environment close to the client’s family, which can continue sharing in the care for the adult child.
Cons: Very limited supply; potential for burnout for foster caregivers if adult clients have ongoing behavior challenges; no staff and little training. Only appropriate for ASD adults needing minimal supports (those with aggression or who damage property are often not eligible for FHA).
A Family Home Agency, a nonprofit vendorized by a Regional Center, approves family homes which offer the opportunity for up to two adult individuals with relatively mild developmental disabilities to reside with a family and share in the interaction and responsibilities of being part of a family. The family home arrangement allows the sharing of food, shelter, experience, responsibilities and love. FHAs are responsible for recruiting, training, approving and monitoring family homes. Social service staff employed by the FHA make regular visits to the family home to ensure that necessary services and supports are in place, and that the match between the family and the new family member is viable, and continues to be viable.
FHA and family home services and supports are a new option which enables adults with developmental disabilities to enter into partnerships with families that promote self-determination and interdependence.
Pros: Takes advantage of existing real estate, possibility of nurturing and supportive home environment close to the client’s family, which can continue sharing in the care for the adult child.
Cons: Very limited supply; potential for burnout for foster caregivers if adult clients have ongoing behavior challenges; no staff and little training. Only appropriate for ASD adults needing minimal supports (those with aggression or who damage property are often not eligible for FHA).
FAMILY TEACHING MODEL
In this model, a family teaching couple lives next door to 3 consumers with an internal adjoining door between the two housing units (as in a duplex). The couple provides 75% of the support for the consumers, manage the building, and are the first to respond in an emergency. They build a close relationship with the consumers and work on behavior as well as training in areas promoting independence. The family teaching model is a teaching program focused on building independence with appropriate support.
Pros: A community-based supportive living arrangement appropriate for high functioning consumers with only mild behaviors and without extreme medical or nursing issues.
Cons: This option was offered to former residents of the Agnews Developmental Center and is not currently being offered to other Regional Center clients; potential for burnout for caregivers if adult clients have ongoing behavior challenges.
In this model, a family teaching couple lives next door to 3 consumers with an internal adjoining door between the two housing units (as in a duplex). The couple provides 75% of the support for the consumers, manage the building, and are the first to respond in an emergency. They build a close relationship with the consumers and work on behavior as well as training in areas promoting independence. The family teaching model is a teaching program focused on building independence with appropriate support.
Pros: A community-based supportive living arrangement appropriate for high functioning consumers with only mild behaviors and without extreme medical or nursing issues.
Cons: This option was offered to former residents of the Agnews Developmental Center and is not currently being offered to other Regional Center clients; potential for burnout for caregivers if adult clients have ongoing behavior challenges.
SFAS is committed to boosting quantity and quality of ASD housing in our communities.
What needs to be done? Among other things:
For more area groups involved in ASD/DD housing issues, please click here.
- Provide priority rental subsidies, such as Section 8, for those with exceptional needs, including substantially disabled ASD adults and their aides.
- Increase vendor rates for group homes to reflect actual cost of living in the Bay Area.
- Increase vendor rates for supported living services to ensure viable community-based living options.
- Create a new model of small, custom group home living tailored to the specific sensory, movement, and space needs for adults with substantial autism. Autism presents unique challenges to staff and programs (see summary of Unique Challenges of Serving ASD Adults).
- Provide incentives for investors to provide housing units to those with ASD, including project-based Section 8 vouchers and/or property tax waivers.
- Use public property and old Developmental Center sites for mixed-used developments that include a strong ASD-friendly component.
- Prioritize ASD housing for new low-income housing developments and set-asides.
- Ending restrictive zoning practices that deny the developmentally disabled access to community-based living options.
For more area groups involved in ASD/DD housing issues, please click here.
The Autism Society of the San Francisco Bay Area provides information but it does not constitute medical or legal information. Referrals provided are suggestions to organizations that might help, but do not constitute a recommendation. The Autism Society cannot be held responsible for consequences that arise from individual dealings with a professional or organization. The Autism Society provides an I&R service but individuals must assume personal responsibility for what they do with the information provided. Inclusion of any organization does not imply endorsement, and omission does not imply disapproval.