An Innovative Housing Solution for Adults with Autism
Frequently Asked Questions:
1. What is Sweetwater Spectrum?
Sweetwater Spectrum provides a supportive living community for adults with autism, across the autism spectrum. The Sweetwater model, starting with our new campus in Sonoma, California, is designed to accommodate a range of safety and sensory needs and lifestyle choices. The extensive research that went into creating the model and operating the campus, in addition to ongoing evaluation into its efficacy, should provide a blueprint for replication.The nation’s growing population of adults with autism now has an additional option for living on their own terms, with purpose and as independently as possible in a home – and a community – of their own.
2. Why was Sweetwater Spectrum created?
More than 80,000 adults across the country are on waiting lists for residential autism facilities, with waiting periods as long as 8-10 years. Existing programs create safe environments but generally isolate those with autism, not taking into account the fact that adults with autism can and should have a range of choices and the ability to lead productive, fulfilling, independent lives. There also are few housing opportunities that fully address the behavioral, sensory, and communications challenges of those with autism.
The Sweetwater goal was to add another option into the existing range of quality living choices, address gaps in present services, and create a sustainable model that others can replicate.
Creating this model took extensive research, time and investments. All of these resources have been expended in order to make the best, most-informed decisions throughout the design and building.
3. How do you see Sweetwater making an impact in current models for assisted living and the debate over how to address housing for the increasingly large autistic adult population?
Sweetwater Spectrum expects to make an impact by gradual, step-by-step replication and refinement of a new model of supportive living for adults with autism. We are beginning to share what we are learning – about resident transition and community - formation, and collaboration among various broader community stakeholders. We are beginning to share what we are learning at Sweetwater Spectrum, and to assist others in their efforts to conceive and build housing for adults with autism – through consulting services, and eventually online resources, and participation in policy discussions. Our expectation is that we’ll provide a replicable model of best practices in supportive living housing for adults with autism, will eventually participate actively in policy discussions, and will expand our own housing management by developing other properties.
4. What is the biggest gap or problem missing from other housing models?
A central dilemma in conceiving of a community for people with autism is that the disorder at its core includes a social skills deficit; so a “community of autistics” seems almost an oxymoron. Our initial impressions at Sweetwater Spectrum are extremely encouraging. We are seeing increases in social interaction leading to real satisfaction for many residents.
Our resident population spans a broad range of levels of functioning. There are readers with deep interests in politics, medicine, cars, amusement parks, and astronomy; musicians familiar with some of the standard classical repertoire on their instruments; an artist actively producing sellable art. There are also residents who are non-verbal or barely verbal, who best express their vitality through physical exercise and other tangible activities. We believe that such a mix is a viable and uniquely valuable opportunity for individual self-expression and growth, what we call life with purpose.
5. What is the biggest misconception about adults with autism?
Even among families of people with autism, the drive for connection found in people with autism is underestimated. The social deficits mask what Sweetwater Spectrum believes is a real hunger for interpersonal connection. Typically, among children with autism, the strongest connections are with parents and other caregivers. We believe, and Sweetwater Spectrum is testing the assumption that true community formation can happen among adults with a broad range of levels of disability associated with autism.
6. What does your research and experience show is the biggest need of adults with autism and their families that is unmet in the current prevailing systems?
Community. There is a danger of isolation, particularly prominent in the thoughts and fears of aging parents with concerns about the ongoing well being of their adult children. If an environment can be provided which offers the needed security, opportunity for participation in the outside world through work and enrichment activities, and connection with a stable community, it’s addressing a significant unmet need. We believe Sweetwater Spectrum is creating such an environment, and breaking new ground in approaches to housing for adults with autism.
7. How is Sweetwater different than other available options? Specifically, how does it differ from group homes?
Sweetwater Spectrum is a supportive living community. Supported living alternatives differ from group home placement in many ways.
Group homes, also known as community care facilities, are privately owned and operated but licensed by the state. Owners are paid with public funds to provide housing, meals, staffing and services to disabled individuals at various levels of care set by the state. Individuals are placed in group homes by the Regional Centers (RC) based on the individuals’ type of disability and assessed level of need, not necessarily their compatibility with other residents or desire to live together. Caregivers are hired and supervised by the group home operator. Menus and activities are planned ahead and provided according to a schedule.
Supported living services (SLS) are much more flexible. Like any renter, residents choosing supported living select the housing from among the market rate units available for rent in their community. They sign the lease, pay rent and other fees directly to the landlord. They also select housemates, subject to the landlord’s right of approval. If the resident needs supportive living services to live successfully in that home, he/she requests these services from their Regional Center. In supportive living, just like settings for neuro-typical adults, individual choice is paramount. Residents plan and prepare their own meals, have access to the amenities on the property, entertain guests or come and go from the property, all at times of their own choosing, subject only to the community rules, and with the SLS support they need to access these choices.
The financial models for group homes and supportive living options are completely different. Licensed group homes are not allowed to charge residents for any aspect of the housing, meals, staffing and services they provide to residents. Instead, group home operators are paid a fee set by the state according to their level of care and funded with a combination of SSI and supplemental payments by the RC. Any difference between the actual cost of the services provided and the amount received from public funds may be retained by the group home operator. For owners who operate group homes as a for-profit business (the majority), this difference is their profit and their income. For group homes operated as not-for-profits, these amounts, if any, are retained by the operator.
In contrast, the owners or landlords of homes used for supported living by disabled residents provide housing only and do not provide meals, staffing or other services. They charge market rates for their housing and do not receive any direct public funds for such payments unless they choose to qualify under state or federal laws as “low income housing,” which Sweetwater Spectrum has not. If SLS residents are eligible to receive SSI and/or any RC supplements, these amounts are paid directly to the SLS residents who in turn may use them to pay rent or for any other permitted purpose. To the extent that the cost of rent exceeds the amount of public funds received by the SLS resident, the resident must pay the difference. In addition, the SLS resident must pay the cost of utilities, food, entertainment and personal items, just as a typical renter would. The only cost guaranteed to be covered in full by public funds under the SLS model is the cost of supportive living services. The number of hours and type of service provided to the resident and paid for by the RC is determined by the RC in consultation with the resident and the conservator, if applicable.
Because group homes must rely solely on public funding to pay for the housing and services they provide, group home operators in California are generally not able to provide the variety of living options such as single rooms, private bathrooms and on-property amenities like pools, exercise rooms, community rooms and gardens that SLS living options permit. In fact, state budget cuts have prevented fees paid to group homes from rising in-line with costs and many group homes are finding themselves under significant financial pressure to continue provision of even the basic services required. Although SLS housing arrangements require a significantly greater financial contribution from the resident or their family, this ability to keep up with current market costs allows the landlord to offer more living options, if the resident is willing to pay for them, and for the Regional Centers to focus their financial support on the provision of unique SLS services to the resident in whatever natural setting he or she chooses.
Sweetwater is different than other supported living options is its physical design and the range of opportunities offered. At Sweetwater, residents have a variety of enriching activities on-site and in the surrounding community from which to choose—from gardens to cooking and art classes to exercise and music programs—to help enrich their own daily activity choices. As Sweetwater welcomed its first residents, we are learning more and gather experiences to help inform future initiatives. We have engaged award-winning architects so the physical space is both environmentally sustainable and designed for the sensitivities of those with autism.
8. What are supported living service organizations and how do they interact with Sweetwater Spectrum?
In California, supported living service (SLS) organizations are vendorized (approved and paid for) by the State, though the Department of Developmental Services. The DDS operations are administered through local, county-based Regional Centers (RC). SLS organizations may be for-profit, or non-profit. They are tasked with providing support staff adequate to assist an individual client with his/her daily life. Through the evaluation process, it’s determined how many hours of support are required each week. The organizations hire, train and supervise the appropriate staff.
In supported living, the choice of SLS agency is made by the individual, or his/her conservator if the individual is conserved. If the support isn’t working out to the individual’s satisfaction s/he can elect to remain in his/her home but work with a different agency.
Sweetwater Spectrum, as the “landlord” and not the purchaser of SLS, has no formal role in relation to the SLS agency. However, Sweetwater Spectrum’s staff develops collaborative relationships with local SLS agencies with the communal goal of challenging each individual to reach his or her highest potential, and live life with purpose. At Sweetwater Spectrum, we place a high value on the hard work done by the support staff, though they are employed by SLS agencies, not by Sweetwater Spectrum. We provide them with continuing education opportunities, on and off site, a pleasant working environment, and a spirit of friendly cooperation.
9. Are there available spots at Sweetwater Spectrum in Sonoma, and if so, how do I apply?
All inquiries can be directed to firstname.lastname@example.org. The application process is extensive. The first step is to review the website to ascertain if you believe living at Sweetwater is appropriate for you (or your family member). The second is to fill out our applicant preliminary interest form. If, in the most preliminary way, you agree that this could work, you will be asked to fill out a full application. The application will include financial review includes determining whether or not a discount is needed, we ask all families to initiate financial planning to assure a resident’s long-term ability to remain at Sweetwater. Once those preliminary steps are complete, the prospective resident must arrange to have adequate staff support (through a supported living service organization) to live as independently as possible at Sweetwater Spectrum. An important aspect of supported living is the choice of where and with whom to live. Consequently, after service provision has been arranged, there remains the critical step of agreeing to live with house-mates at Sweetwater. Once those many steps are complete (plan on the process taking three-six months), residents and their conservators or guarantors, if appropriate, are invited to sign a lease.
10. If I want to start a Sweetwater Spectrum community near my hometown, how should I start?
Sweetwater is currently developing lessons-learned documents and other resources to help inform, encourage, and enable the establishment of future communities in the Sweetwater model. When it becomes appropriate for us to turn more of our attention to assisting with the export of our model, the Sweetwater team will be thoughtful about the best way to do that and most effective role for us to play.
The best place to start is to gather a small group of interested families and community members (we recommend a working group of three-four families), begin to think about how to raise capital funds, and contact us.
11. What geographical environment is suitable for implementing the Sweetwater model?
Sonoma is a uniquely beautiful and welcoming community, and we are fortunate to have found and been welcomed into this wonderful town. That said, there are many other places – rural, urban, or other – which can offer a suitable, comfortable, beautiful, and welcoming place for a community of people with autism.
12. What do you say to parents desperate for a solution for their child, but unable to get into Sweetwater and unable to start their own model in their community?
It is because of an explosion of need that Sweetwater Spectrum was conceived and built. We’re doing our part to research, build, demonstrate, share, and eventually replicate what works in the field of housing for adults with autism; but we recognize that whatever we do will be insufficient. Additional efforts, from policy to entrepreneurism, must be pursued, and we welcome the opportunity to be a partner in such efforts.
13. How can I help?
Fundraising remains critical in order to complete this model, and to develop and implement our replication strategy. Our ongoing investment in research and development, including design considerations and establishment of a new public-private collaborative model, will reap benefits in the years and decades to come. We are committed to supporting replication of our model nationwide.
If you have contacts with charitable foundations that might be interested in the project, please contact our development committee through the main email address (email@example.com).
We are also looking for local volunteers to help with our farm, and to lead enrichment activities for our residents. Contact firstname.lastname@example.org to learn more about volunteer opportunities.
See also http://www.sweetwaterspectrum.org/donate1.aspx
14. What are relevant community resources?
North Bay Regional Center
The purpose of North Bay Regional Center is to assist people in the North Bay area with, or at risk for, developmental disabilities to obtain services and supports they need to live as other people live in the community.
North Bay Housing Coalition
The North Bay Housing Coalition through its services seeks to support inpiduals with developmental disabilities (and their families) and to enhance their lives as they live within their chosen community.
Sonoma County Housing Authority (HUD)
The purpose of the program is to provide rental assistance to very low-income families and inpiduals to enable them to rent decent, safe and affordable housing.
PROGRAM/SUPPORTED LIVING RESOURCES:
Since 1954, Lifehouse (formerly known as MARC) has opened the doors of opportunity and independence to inpiduals with developmental disabilities through life-skills training, community integration, advocacy, referrals and information.
Bayberry provides supported living and residential services for people with intellectual and developmental disabilities in Lake, Napa, Solano, and Sonoma Counties. The State of CA contracts with the Department of Developmental Services (Sacramento) who then contracts with 21 Regional Centers statewide. North Bay Regional Center and Redwood Coast Regional Center vendor Bayberry, Inc. to provide Supported Living Services and Residential Services in Napa, Solano, Sonoma, and Lake Counties. Bayberry is also funded by Medi-Cal.
More than 1,300 men, women and children, all living with a variety of disabilities, seek their own paths to personal fulfillment and independence with the help of programs and opportunities made available at Becoming Independent.
Oaks of Hebron
Oaks of Hebron is a Christian non-profit agency providing residential and recreational services for persons with developmental disabilities. They are a vendored agency of North Bay Regional Center, which is the local organization that receives funds from the California Department of Developmental Services. They provide services to any person referred to us through the Regional Center. Inpiduals and families seeking services may request Oaks of Hebron as their service provider through the regional center.
A residential Independent Living program in Napa, offering Transitional Living Services for those leaving home or Boarding School for the first time. Independent living skills are taught along with social skill development and emphasis is put on successfully integrating in to a job or taking classes at Napa Valley College. In our Community Living program individuals live in their own homes and receive support from our case managers to ensure active socialization in our community while living as independently as possible.
Sonoma County SELPA - Transition Services
The Sonoma County Special Education Local Plan Area (SELPA) is a state-mandated association that oversees and facilitates educational services for students with disabilities in Sonoma County.
Collaborative Autism Training & Support (CATS) Program
Developed in 2005 in response to the growing, urgent need for support of North Bay children with autism spectrum disorders and their families - a collaboration with Sonoma State University.
UC Davis Mind Institute
The UC Davis MIND Institute (Medical Investigation of Neurodevelopmental Disorders) is a collaborative international research center, committed to the awareness, understanding, prevention, care, and cure of neurodevelopmental disorders.
Arizona State University Stardust Center
Research undertaken by faculty and students at the ASU Stardust Center and ASU's School of Architecture led to the formulation of evidenced-based design goals and guidelines to directly future housing design and development for adults with autism..
ADD SF Autism Society
The Autism Society of the San Francisco Bay Area is a grass-roots organization of parents, family members, friends and professionals concerned about the well-being of local autism families, with an emphasis on expanding the limited lifespan care options for the dramatically increasing numbers of adults with autism.
Autism Speaks is dedicated to increasing awareness of autism spectrum disorders, to funding research into the causes, prevention and treatments for autism.
Area Board 4 – State Council on Developmental Disabilities
The State Council on Developmental Disabilities (SCDD) is established by state and federal law as an independent state agency to ensure that people with developmental disabilities and their families receive the services and supports they need. Area Board 4 covers Sonoma County.
City of Sonoma
Located in the heart of one of the world’s premier wine producing regions, Sonoma is a working town with about 9,500 residents and a rich cultural heritage.
The Cypress School
Provides non-public school services for children with autism and other developmental disabilities - located in Petaluma, CA.