A Paper for my Introduction to Disability Studies Class
Housing for Adults with Autism in the Bay Area
Children with autism spectrum disorder (ASD) grow up to be adults with ASD, as autism does not magically go away in adulthood. The prevalence of ASD is rapidly increasing, with the CDC (2019) placing the diagnosis rate at 1:59 children. This means that there are an increasing number of autistics exiting the school system and entering the adult world (Marino, 2018). However, as I find when trying to navigate the adult world of autism, supports and services are not just inadequate but the existing supports are not prepared to deal with the varied and unique needs of adult autistics. The situation can be complex as there is a huge spectrum of profiles within autism itself, a factor that also comes into play in the case of housing. While many autistics function independently with little to no support, a significant number are not employed and need more support for daily living. This paper focuses on the housing challenges for adult autistics needing more support in the Bay Area.
Other topics in the adult ASD world that were considered during the web search were Adult Day Programs and employment. The first was concerning as many of my peers have not been accepted into any Adult Day Program due to “autism behaviors.” Adult Day Programs typically support people with disabilities (PWD) after they exit the special education system at age 22 (Escher, 2014) and range in the level of support provided. The second issue of employment is equally concerning as according to the National Longitudinal Transition Study only, “58% of young adults ages 20-25 with ASD who had been in special education in secondary school had ever worked during their early 20’s” (Marino, 2018).
As the process of deinstitutionalization began all over the US, an important piece of legislation in California that directly impacted housing for individuals with developmental disabilities like autism was the Lanterman Act of 1969. It opened the doors to the “right to get the services and supports [autistics] need to live like people without disabilities” (The Lanterman Developmental Disabilities Services Act, n.d.). It allowed for the creation of Regional Centers which are nonprofits that contract with the Department of Developmental Services (California Department of Developmental Services, 2018). Social workers at the Regional Centers help coordinate tailored services and supports including full or partial funding depending on the type of housing. Yet the housing situation in the Bay Area as summed up by Lisa Kleinbub, executive director of the Regional Center of the East Bay, is that there is, “a pent-up demand right now among young (special-needs) adults for housing...They’re housed in settings that really aren’t what they want.” (Kendell, 2019). Kleinbub goes on to add that there are fewer than 100 units for the 4500 units of housing needed in Alameda and Contra Costa counties. When it comes to Santa Clara, Santa Cruz, Monterey, and San Benito counties, Kleinbub states that almost eighty percent of the 17,500 clients live with their parents (Kendell, 2019).
In this research, it is useful to briefly look at some of the current housing options as listed by the San Francisco Autism Society. The most common and well known are the Group Homes or Community Care Facilities. The typical three-bedroom group home is privately owned and licensed by the state and can house up to six individuals with the state paying the group home for each individual depending on the level of care needed. Group homes provide an all-in-one solution (ASD Housing Options, 2019).
Apartments and co-ops are arrangements where an individual lives alone or with shared living space. Staffing support is provided through agencies or individuals that provide Supported Living Services (SLS) or Independent Living Services (ILS) (ASD Housing Options, 2019). The big advantage of using SLS and ILS is that the client, “retains separate control over housing choice and support staff...[even as they] need support to carry out choices” (ASD Housing Options, 2019). Rents are expected to be funded through social security income received by the individual and Section 8 vouchers which landlords can make use of to rent apartments at fair market value.
The autism community model is increasingly popular and is loosely based on a retirement community model, offering housing, community and sometimes programming options. Two of my peers will have a future home in the Clearwater Ranch in Sonoma county. Spread over 80 acres it will feature many single-family homes, each housing four ASD adults (with their own room) and two caretakers. Another example is the Sweetwater Community in Sonoma County and the soon to be completed Summer Hill project in Pleasanton (Kendell, 2019). Extra support needed for individuals would still have to be organized via SLS and ILS agencies (ASD Housing Options, 2019).
However, each type of housing option comes with its own set of challenges and more so in the context of the Bay Area. A small subset of these issues are discussed below.
The first issue is that “even in situations where PWD are not able to live independently, living in community settings is generally considered preferable to institutionalization (if adequate support is provided)” (Schur, Kruse, & Blanck, 2013, p. 124). Group homes and SLS/ILS housing are more in line with the principle of housing in community settings. So there is debate over whether the creation of exclusive communities for autism would be a form of “gilded” segregation. But Kleinbub feels that the community model may work as long as, “residents have opportunities to venture beyond the building” (Kendall, 2019). I also want to add that that it is worrying that so many autism communities are coming up in Sonoma county which is likely to be the site of recurrent wildfires as climate change is not likely to reverse course in the immediate future. As we learned in class, PWD are most at risk during rescue and evacuation attempts.
A fundamental problem is that many of the housing solutions for the disabled community were not envisaged for the behavioral issues that often accompany autism. Housing in the community is easier when there are fewer “disruptive” behaviors. Some autistics may find it difficult to share rooms in Group Homes or have close proximity, others may have frequent meltdowns or behaviors that other autistics may not be able to tolerate. A friend was sent back to his parental home from two different group homes as they could not manage his behaviors.
Training staff to the unique needs of the individual has been a challenge especially if an individual is seen as having more support needs. My friend Tyler Fihe, now in his 30s, has been living on his own in an apartment with SLS support since age 19. He states in a youtube video he made for the 1:59 Autism Spectrum Disorders DeCal class here at UC Berkeley, “I wish I could say that I have been fully in charge of my household...having trained, probably hundreds of staff over the years. I finally wrote an operations manual. It is hard work to keep it up to date, but it is harder to teach the same basics over and over again” (Fihe, 2019).
The Bay Area is very expensive to live in, making it almost impossible to find affordable housing for adult autistics. According to the Bay Area Market Reports, the median home price in the Bay Area is $980,000 compared to the California average of $609,000 and the United States average $279,600 (Bay Area Real Estate Markets Survey, 2019). Rents are also prohibitive, the national average at $1,465 compared to $3,240 in Berkeley, and $2,789 in San Jose (Bona, 2019). It is not without some irony that the social security income received by an adult, which averages $1000 a month, “is expected to fund the rent, utilities, food and living expenses“ (ASD Housing Options, 2019).
The high cost of living affects support services as well. In his video, Fihe adds, “Staff turnover has always been a major problem. The pay for staff is ridiculously low. It bugs me that my staff could make more money making lattes and mochas than helping me have a life. Our society values seem pretty screwed up to me" (Fihe, 2019). Two of Fihe’s SLS agencies have shut down in the last ten years due to staff not being able to afford to live in the bay area (Fihe, 2019). This is a continuing trend. Group homes are again paid a flat state fee which does not account for the geographical cost of living (ASD Housing Options, 2019). The group home of another friend is moving to a rural area to lower their cost of operation. When that happens either you live too far away from your family to visit or move back into the family home as you continue to search for other (almost non-existent) options.
Even in the case of solutions like the communities, either the cost of entry is prohibitive or the affordable ones have long waitlists. A family I know bought into Clearwater Ranch a few years ago for $200,000 and the other family recently at $350,000. It guarantees a room for the lifetime of the ASD adult. 300 individuals have expressed interest in the 31 units of the more affordable Sunflower Hill community project with rents from $300 to $1,500 a month (Kendell, 2019).
One of the concerns for adult autistics and their families is the potential for abuse and neglect in any housing option. The social worker for a severely impacted ASD friend paid a surprise visit to his SLS apartment and found his careworker on top of him. His horrified parents immediately moved him back to the parental home for now.
Group homes have the most oversight in that they are licensed. However, my social worker remarked that it was impossible to physically visit each client more than once or twice a year as she had a huge caseload, many of them in different group homes. According to the San Francisco Autism Society, some group homes may also choose to limit family involvement and oversight (ASD Housing Options, 2019). Historically, a lack of oversight and accountability contributes to neglect or abuse (UNICEF, 2005, p. 12).
A majority of adults continue to live in the family home for many years due to this housing crisis. There is some advantage to living amongst familiar friends and family which gives a sense of belonging (ASD Housing Options, 2019). While it is actually cost-effective for the state to have the adult continue to stay with their families into adulthood, there is currently a huge financial disincentive to do so (ASD Housing Options, 2019). The full range of ILS and SLS services cannot be accessed unless the adult autistic resides in a separate address. Aging parents simply cannot continue to provide the same level of care without access to significant SLS support, so autistics are often forced into housing options that are less than optimal. Changes in legislation to enable adults to continue living in the parental home with full SLS/ILS support could help alleviate some of this housing crisis until better alternatives can be found.
Families can indeed play an important role in the oversight process of “service delivery and monitoring of safety” (ASD Housing Options, 2019). My social worker had once mentioned that some parents are buying a smaller second home close by for their adult child so that the parents can better monitor service delivery. Buying a second home in the Bay Area is however impossible for most. Some family friends have bought two houses on the same street in cheaper areas like the outskirts of Sacramento, one for themselves and one for their adult ASD family member. A family I know in San Jose is working on converting their “in-law” unit through city permits into a separate address. Caseworkers in Marin County have also indicated to a family I know that the county was now encouraging the building of in-law units on existing properties and zoning them as separate addresses. It is part of the attempt by Marin county to address the housing crisis for adults and the hope is that more counties will follow suit.
Essentially the state has been unprepared for the exploding numbers of adults with autism which has rushed their housing needs into a crisis mode, more so in an expensive geographical location like the Bay Area. Changing legislation to build and rezone in-law units on existing properties as well as continued residence in the parental home with full SLS support may help alleviate some of this crisis. Thousands of affordable units also need to be built as well as other incentives to make rents affordable. Staffing is a critical component for this population so affordable housing for staff also needs to be addressed. In addition, there is the issue of addressing the unique and behavioral needs of the autistics themselves to consider, which impacts the type of housing they need. The overriding issue of disability rights still remains unresolved for the autism population - that of inclusion via community-integrated housing versus a new form of segregation with the creation of autism communities. There is clearly a housing crisis for this vulnerable population and currently no simple solutions.
Additional Note:
Additional Note:
Something which appeared almost like a conundrum to me (and Prof Marsha Saxton also hinted at this in class) was the Independent Living Paradigm. PWD (People with Disabilities) went from being dependent on their families to living and making decisions on their own; the shift in decision making towards self-determination is just amazing progress. It truly represents the disability rights mantra of, “Nothing about us, without us.” In my adult autism housing web paper, one of the options mentioned (or adults with more support needs is supported living, which is a form of independent living.
The concern is that independent living unless arranged properly can result in isolation. It could end up with just the autistic and a caretaker who will leave for their own family home when their shift ends. The thought of loneliness is one of the most terrifying fears for a lot of folks including me. Just parking a person in the middle of a community with personal assistants does not mean inclusion or a sense of community. A great irony is that the non-disabled neurotypical population places so much emphasis on being surrounded by family and friends yet the disabled are pushed towards becoming an “independent island” that has to live away from the family. Isn’t having some sort of self-determined, independent living arrangement in your family home or near your family a better option - so you continue to have access to that network of friends and family in your life rather than just a series of paid caretakers alone. Staff turnover is so high in the Bay Area and it is hard for a PWD to get a sense of stability or mental calm when you know 'paid people' around you will/can quit anytime.
We need hybrid housing options that allow for self-determination yet incorporate the opportunity for being included in the community and access to the family and friends network. Doing the paper both educated and worried me as it seemed to me that those of us with more significant disabilities will be at the mercy of caretakers and support agencies. It was no surprise to me to hear that some PWD got abandoned by their caretakers during the Paradise wildfire 2 years ago.
References for Web Paper.
ASD Housing Options. (2019). Retrieved October 14, 2019, from https://www.sfautismsociety.org/housing-options-for-adults-with-autism.html.
Bay Area Real Estate Markets Survey - Compass. (2019, October). Retrieved October 14, 2019,
Bona, S. (2019, July 22). Bay Area Rent Report - June 2019. Retrieved October 14, 2019, from
California Department of Developmental Services. (2018, June 8). Information About Regional
Centers. Retrieved November 11, 2019, from https://dds.ca.gov/RC/.
CDC. (2019, September 3). Data & Statistics on Autism Spectrum Disorder. Retrieved from
https://www.cdc.gov/ncbddd/autism/data.html.
Escher, J. (2014, January 22). Commentary: What happens when autistic children become
adults. Retrieved October 14, 2019, from
Fihe, T. [Tyler Fihe]. (2019, April, 9). Tyler Fihe [Video File]. Retrieved from
Kendall, M. (2019, May 21). Why the housing crisis hits this Bay Area group especially hard.
Retrieved from
The Lanterman Developmental Disabilities Services Act. (n.d.). Retrieved November 11, 2019,
Marino, S. A. (2018, September 13). The Special Ed Epidemic: What happens when they age
out of school? Retrieved October 14, 2019, from
Schur, L., Kruse, D., & Blanck, P. D. (2013). People with Disabilities: Sidelined Or
Mainstreamed? New York: Cambridge University Press.
UNICEF. (2005, July 28). Violence against Disabled Children: UN Secretary Generals Report
on Violence against Children Thematic Group on Violence against Disabled Children
(Summary Report) New York: United Nations. Retrieved November 11, 2019, from
