Conference Wrap-Up
Three top lessons from our first all-day housing conference:
Lesson 1: We ended institutionalization (good), but neglected to create a statewide plan for housing people with developmental disabilities in the community, even as the autism/DD population began to sharply increase (not good).
We are clearly not prepared to serve the supported housing needs for the skyrocketing population of adults with autism and related developmental disabilities. Not only is there no plan for provision of the four-walls housing itself, funding for needed support services is at unsustainably low levels, causing staff instability and provider shut-down.
Housing costs in the Bay Area, prohibitive even under the best of circumstances, mean Social Security checks, at $900 or so a month, can’t cover rents. Meanwhile there is no voucher/Section 8 programs to serve the developmentally disabled.
Other government policies erect further barriers, making it necessary to for innovative housing projects to be privately funded. New Medicare policy may further restrict options owing to a potential chilling effect on support-rich housing deemed “congregate” in nature. (More on that below—we need your help writing to the state about this.)
Given the high barriers to supported housing, it is hardly surprising that California has barely added any community-serving developmental disability beds over the past decade. Right now, the only DDS-funded housing option for dependent adults with autism is group homes, but those are now few and far between, and growing fewer by the month due to inadequate funding.
Lesson 2: Despite formidable barriers, we have permission to invent, dream, and ask, and indeed, many people find workable solutions.
We learned about a great variety of housing models around the country and about existing and planned alternatives here in the Bay Area: shared living, group homes (adult residential facilities), transition homes for young adults with Asperger’s, co-ops, adult foster care, farmsteads, supported-living apartments, intentionally supportive mini-communities within communities, and more.
We learned that community-based housing can sometimes be affordable with low-income “set-asides” in new developments (though those have years-long waitlists) or with vouchers/Section 8, but there is currently no program to provide these vouchers to adults with developmental disabilities.
We learned that groups can partner with municipalities to obtain rights to surplus government land. We learned of ways families can use their own property to serve the the long-term good of disabled children and/or pool their resources.
We learned that around the Bay Area, parents are forming regional networking groups to learn from each other and local experts, and also new nonprofits to create new collaborative housing projects. We learned that online tools are being developed to help parents understand options, and that a group in LA (FRED) is actively working to bring the supported housing issue to the fore.
We learned that sometimes parents just sort of close their eyes and take a risk on a piece of property, or start small and grow over time. Sometimes they get miracle donors or engage in vigorous fundraising. Parents have several options to start new organizations, be they private LLCs or public-serving not-for-profits, or a hybrid mix of the two. Or they can partner with existing nonprofit developers, or create a “constellation” of supported housing across various settings without a central hub. We learned that an explicitly positive mission and culture is critical to success in any setting.
Lesson 3: We must advocate for change
Notable opportunities for advocacy:
(1) We must advocate to new state Developmental Services Task Force. See our past letters to the Task Force on our Blog: http://www.sfautismsociety.org/blog. We encourage you to write to this newly created Task Force to voice your own concerns and vision for the future, particularly advocating for a “Community Placement Plan” to address the long-term housing needs for the 270,000 DD individuals in California who are not exiting institutions.
(2) We must expand, not restrict, housing options. We must ensure California’s implementation of new Medicaid policy does not have a chilling effect on future supported housing opportunities. Please write an email to the state today—our suggested talking points are here: http://www.sfautismsociety.org/hcbs-talking-points.html
(3) Subsidies are essential. At a local level, we must ask that Section 8 housing vouchers be made available for adults with DD, that we expand DD-eligible affordable housing units, and end DD-prohibitive zoning restrictions.
A great way to get involved is to engage with regional housing groups. Click here for more info.
Lesson 1: We ended institutionalization (good), but neglected to create a statewide plan for housing people with developmental disabilities in the community, even as the autism/DD population began to sharply increase (not good).
We are clearly not prepared to serve the supported housing needs for the skyrocketing population of adults with autism and related developmental disabilities. Not only is there no plan for provision of the four-walls housing itself, funding for needed support services is at unsustainably low levels, causing staff instability and provider shut-down.
Housing costs in the Bay Area, prohibitive even under the best of circumstances, mean Social Security checks, at $900 or so a month, can’t cover rents. Meanwhile there is no voucher/Section 8 programs to serve the developmentally disabled.
Other government policies erect further barriers, making it necessary to for innovative housing projects to be privately funded. New Medicare policy may further restrict options owing to a potential chilling effect on support-rich housing deemed “congregate” in nature. (More on that below—we need your help writing to the state about this.)
Given the high barriers to supported housing, it is hardly surprising that California has barely added any community-serving developmental disability beds over the past decade. Right now, the only DDS-funded housing option for dependent adults with autism is group homes, but those are now few and far between, and growing fewer by the month due to inadequate funding.
Lesson 2: Despite formidable barriers, we have permission to invent, dream, and ask, and indeed, many people find workable solutions.
We learned about a great variety of housing models around the country and about existing and planned alternatives here in the Bay Area: shared living, group homes (adult residential facilities), transition homes for young adults with Asperger’s, co-ops, adult foster care, farmsteads, supported-living apartments, intentionally supportive mini-communities within communities, and more.
We learned that community-based housing can sometimes be affordable with low-income “set-asides” in new developments (though those have years-long waitlists) or with vouchers/Section 8, but there is currently no program to provide these vouchers to adults with developmental disabilities.
We learned that groups can partner with municipalities to obtain rights to surplus government land. We learned of ways families can use their own property to serve the the long-term good of disabled children and/or pool their resources.
We learned that around the Bay Area, parents are forming regional networking groups to learn from each other and local experts, and also new nonprofits to create new collaborative housing projects. We learned that online tools are being developed to help parents understand options, and that a group in LA (FRED) is actively working to bring the supported housing issue to the fore.
We learned that sometimes parents just sort of close their eyes and take a risk on a piece of property, or start small and grow over time. Sometimes they get miracle donors or engage in vigorous fundraising. Parents have several options to start new organizations, be they private LLCs or public-serving not-for-profits, or a hybrid mix of the two. Or they can partner with existing nonprofit developers, or create a “constellation” of supported housing across various settings without a central hub. We learned that an explicitly positive mission and culture is critical to success in any setting.
Lesson 3: We must advocate for change
Notable opportunities for advocacy:
(1) We must advocate to new state Developmental Services Task Force. See our past letters to the Task Force on our Blog: http://www.sfautismsociety.org/blog. We encourage you to write to this newly created Task Force to voice your own concerns and vision for the future, particularly advocating for a “Community Placement Plan” to address the long-term housing needs for the 270,000 DD individuals in California who are not exiting institutions.
(2) We must expand, not restrict, housing options. We must ensure California’s implementation of new Medicaid policy does not have a chilling effect on future supported housing opportunities. Please write an email to the state today—our suggested talking points are here: http://www.sfautismsociety.org/hcbs-talking-points.html
(3) Subsidies are essential. At a local level, we must ask that Section 8 housing vouchers be made available for adults with DD, that we expand DD-eligible affordable housing units, and end DD-prohibitive zoning restrictions.
A great way to get involved is to engage with regional housing groups. Click here for more info.
Presentation Videos
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Jill Escher, president of the Autism Society San Francisco Bay Area, discussed the big picture of the skyrocketing numbers of young adults with DD (a growing percentage of whom have autism) and the limited public planning and resources available.
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Desiree Kameka is the director of communication and advocacy at the Madison House Autism Foundation based in Maryland. She is also director of the Autism Housing Network and Coalition for Community Choice (CCC). In her presentation, Desiree described a variety of housing models across the country that serve adults with developmental disabilities. She was also joined by special guest Denny Rogers, Safe Haven Farms, Ohio.
Links to videos shown during Desiree's presentation: L’ Arche Washington DC: http://vimeo.com/64176669 CoHousing: https://www.youtube.com/watch?v=t87KjgKnfOA Noah’s Nest: http://youtu.be/4ii5Vhw9FqA?t=1m40s Arc Village: https://www.youtube.com/watch?v=8P3g9kSgaJ0 Brookwood Networking Days: https://www.youtube.com/watch?v=yj8AeMZ3Fxs Down Home Ranch: https://www.youtube.com/watch?v=75tw8hnmoIY CA Person-Centered Planning Guide: http://www.dds.ca.gov/RC/docs/IPP_Manual_Chap4a.pdf Coalition for Community Choice: http://www.autismhousingnetwork.org/advocacy/take-action/ |
Showcase: What’s happening in the Bay Area now.
This was a series of rapid-fire mini-presentations showcasing some of the plans and projects around the Bay.
This was a series of rapid-fire mini-presentations showcasing some of the plans and projects around the Bay.
Bricks-and-Mortar
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Jan Stokley of the Housing Choices Coalition described the new affordable apartments for adults with disabilities in Mountain View. Housing Choices Coalition was created in 1995 by parents and professionals to address the acute need for suitable housing for people with developmental disabilities.
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Darin Lounds is the executive director of the Housing Consortium of the East Bay. HCEB creates inclusive communities for individuals with developmental disabilities or other special needs through quality affordable housing in Alameda and Contra Costa Counties. HCEB
provides housing outreach and support services, develops affordable housing, partners with other nonprofit and for-profit companies to secure set-asides within larger rental communities, and owns and operates special needs housing. |
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Dana Hooper works with Life Services Alternatives, a nonprofit that provides care and support to adults with special needs through licensed, community-based homes and individual programs. He talks about the Cypress Home in San Jose, and making plans for their 11th adult residential home.
Link to video about LSA's Cypress home: https://www.youtube.com/watch?v=4ISjC75fv5w |
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Liz Sandoval Kane is the founder and director of the Shire House in San Jose. The Shire House is a transition home who's mission is to provide a safe, healthy and active residence for young adults with Asperger's, HFA, and challenging behaviors, while promoting the development of self management skills, social skills and independent living skills.
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Jill Escher, president of the Autism Society San Francisco Bay Area, discussed the Claradon Properties, LLC, two disability-serving properties in Santa Cruz (and the importance of section 8 vouchers, and a mention of Friends of Children with Special Needs).
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Connie Boyar Frenzel (connieboyar@gmail.com) is the parent of a 26 year old man with autism and the SFASA Vice President. Here she talks about a home in Milpitas.
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Getting Shovel-Ready
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Lisa Zuegel is the mother of 15 year-old son with developmental delays. She and a group of other parents in the lower peninsula are cooperating on a new vision for creating a sense of community among several properties in and around Mountain View.
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Irene Litherland is a board member of SFASA and the mother of an 18-year-old boy with autism. She is the leader of the East Bay Autism Housing Networking Group (see sfautismsociety.org).
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On the Drawing Board
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Irma Velasquez, the treasurer of SFASA, is the mother of a young man with autism. Larry Grotte is the father of an adult son with special needs seeking to develop better quality-of-life solutions for those individuals who require life-long support and principled compassionate care.
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Susan Riggle Waterson is the mother of 13 year-old boy with nonverbal autism who loves nature and food. With 57 years of experience providing recreation for the special needs community (Camp Krem), Alex Krem has a strong interest in creating rural and agricultural living options for adults with developmental disabilities. Contact them at letsbuythefarm@gmail.com.
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Costanoa Commons is a non-profit that began with a small group of parents raising children with developmental and physical disabilities in Silicon Valley. Their goal is to create permanent, high quality homes for 18-40 adults, including live-in assistants, that are integrated with a small-scale organic farming and aquaponics component. You can contact Heidi at hcartan@costanoacommons.org.
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Rachel Goldstein is a member of the Facing the Housing Dilemma Parent Group in San Francisco, which was launched in January 2014 and continues to provide a platform for parents of children with developmental disabilities to learn, network, and advocate together.
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Ready for more?
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David Grady is the Executive Director of the Area Board on Developmental Disabilities 7, helping families understand housing options in our area.
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Mari-Anne Kehler is the director of the FRED Conference in Los Angeles. FRED is dedicated to the idea that all individuals deserve to determine their futures. The conference brings top thinkers: experts, families, and self-advocates together to share leading practices and accelerate approaches to building those futures.
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Denise Resnik, founder of the renowned Southwest Autism Research and Resource Center, or SARRC, in Phoenix, describes her in-progress housing project for young adults with autism. First Place is an innovative transit-oriented mixed-use development, leveraging the benefits of a supportive urban area. Located in the heart of Greater Phoenix, First Place includes 50 apartments for residents, separate suites for transition academy students, and a 10,000-square-foot leadership institute. It will connect residents and students to jobs, friends, lifelong education, the arts, recreation, and their community. Please see the website and the video to learn more.
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Deirdre Sheerin is the CEO/Executive Director of the Sweetwater Spectrum. Sweetwater Spectrum in downtown Sonoma is a pilot community-within-a-community designed to meet the extraordinary need for appropriate, high-quality housing choices for adults with autism. It is a place where they have safety and a sense of community and belonging.
More
than anything, parents want their children to be safe, active, engaged and
happy in their community of choice. Deirdre described the importance of a
positive mission and culture, no matter what residential settings.
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Natalie Gubb is a partner of the firm of Gubb & Barshay in Oakland. Gubb & Barshay is widely-known as one of the top law firms specializing in the field of affordable housing. Based in San Francisco Bay Area, the firm is recognized nationally for its expertise in the low income housing tax credit program and in other affordable housing finance programs. Natalie conducted
a "mini law school class" to explain the operational and practical
differences between different forms of ownership.
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This panel discussed how parents can utilize their own assets, including retaining the family home as a permanent residence for their DD child(ren), or collaborating with other parents on purchasing a property. Michael of Gilfix & LaPoll, Tracey of Bay Area Housing Corporation, and Dana, director of Life Services Alternatives, Inc., shared their experiences and ideas.
Michael Gilfix is a nationally known speaker, author, and practitioner with an exceptional understanding of tax and other "real life" problems in special needs practice. Gilfix & LaPoll is an estate, special needs, and tax planning law firm in Palo Alto that has been addressing special needs planning for 30 years. Tracey Chew is the associate director at the Bay Area Housing Corporation. BAHC is a nonprofit that develops community-based housing for adults with developmental disabilities. BAHC owns and manages dozens of special-needs properties, primarily in Santa Clara County. Dana Hooper works with Life Services Alternatives, a nonprofit that provides care and support to adults with special needs through licensed, community-based homes and individual programs. |
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Susan Houghton, Sunflower Hill
Darin Lounds, Housing Consortium of the East Bay Bill Pickel, Brilliant Corners (Formerly West Bay Housing) Barry Benda, Brilliant Corners Brilliant Corners is a nonprofit supportive housing provider with offices in San Francisco, Los Angeles, and, soon, San Diego. It develops, owns, and manages both licensed and unlicensed housing, with roughly 100 properties open or in development. In addition to owned properties, it is California's leading manager of scattered-site supportive housing programs for people transitioning from institutionalization and homelessness. The panel discussed formidable barriers we face and what's needed to overcome them. The barriers are both financial (huge costs and lack of government planning and subsidies) and programmatic (many federal and state policies restricting housing options for adults with DD). |
Other Conference Materials
Links to conference presenter slides:
[to come]
Links to conference presenter websites:
Madison House Autism Foundation, Desiree Kameka: http://www.madisonhouseautism.org/
First Place, Denise Resnik: http://firstplaceaz.org/
Safe Haven Farms, Denny Rogers: http://www.safehavenfarms.org/
Housing Choices Coalition, Jan Stokley: http://housingchoices.com/
Housing Consortium of the East Bay, Darin Lounds: hceb.org
Life Services Alternatives, Dana Hooper: lsahomes.org
Shire House, Liz Kane: shirehouse.org
AspenNet, Meg Fields: aspergersteam.com
The Big Wave Project: bigwaveproject.org
Sunflower Hill, Susan Houghton: sunflowerhill.org
Rident Park, Irma Velasquez and Larry Grotte: irmaevelasquez@gmail.com
“Let’s Buy the Farm!” Susan Riggle and Alex Krem: letsbuythefarm@gmail.com
The FRED Conference, fredconference.org
Sweetwater Spectrum, Deirdre Sheerin: http://sweetwaterspectrum.org/
Gubb & Barshay, Natalie Gubb: http://gubbandbarshay.com/
Gilfix & LaPoll, Michael Gilfix: http://gilfix.com/
Brilliant Corners, William Pickel and Barry Benda: http://www.westbayhousing.org/
Bay Area Housing Corporation: ___
[to come]
Links to conference presenter websites:
Madison House Autism Foundation, Desiree Kameka: http://www.madisonhouseautism.org/
First Place, Denise Resnik: http://firstplaceaz.org/
Safe Haven Farms, Denny Rogers: http://www.safehavenfarms.org/
Housing Choices Coalition, Jan Stokley: http://housingchoices.com/
Housing Consortium of the East Bay, Darin Lounds: hceb.org
Life Services Alternatives, Dana Hooper: lsahomes.org
Shire House, Liz Kane: shirehouse.org
AspenNet, Meg Fields: aspergersteam.com
The Big Wave Project: bigwaveproject.org
Sunflower Hill, Susan Houghton: sunflowerhill.org
Rident Park, Irma Velasquez and Larry Grotte: irmaevelasquez@gmail.com
“Let’s Buy the Farm!” Susan Riggle and Alex Krem: letsbuythefarm@gmail.com
The FRED Conference, fredconference.org
Sweetwater Spectrum, Deirdre Sheerin: http://sweetwaterspectrum.org/
Gubb & Barshay, Natalie Gubb: http://gubbandbarshay.com/
Gilfix & LaPoll, Michael Gilfix: http://gilfix.com/
Brilliant Corners, William Pickel and Barry Benda: http://www.westbayhousing.org/
Bay Area Housing Corporation: ___
Also featuring Bill Pickel, Brilliant Corners, Barry Benda, Brilliant Corners, Darin Lounds, Housing Consortium of the East Bay, Jill Escher, Autism Society San Francisco Bay Area, and Elizabeth Sandoval Kane, Shire House, David Grady, Area Board on Developmental Disabilities 7
To learn about sponsorship opportunities, please email jill.escher@gmail.com.