Autism Society San Francisco Bay Area
PO Box 249
San Mateo, CA 94401
Senate Committee Members:
Ed Hernandez, Chair
Mike Morrell, Vice Chair
Joel Anderson
Jim Beall
Isadore Hall, III
Mark Leno
Mike McGuire
Holly J. Mitchell
Bill Monning
John M. W. Moorlach
Jim Nielsen
Richard Pan
Lois Wolk
Assemby Committee Members:
Rob Bonta, Chair
Brian Maienschein, Vice Chair
Catharine B. Baker
Susan A. Bonilla
Nora Campos
Eduardo Garcia
Marc Levine
Chad Mayes
Miguel Santiago
Marc Steinorth
Mark Stone
Tony Thurmond
Jim Wood
August 17, 2015
Re: Public Comment for Senate and Assembly Hearings, Special Session, August 18, 2015
Dear Members of the Special Session Legislative Committees:
We are writing to address the elephant in the room of today’s efforts to save California’s Developnental Services system from collapse: our state’s autism explosion. California’s population of dependent and disabled adults with autism is soaring. The Department of Developmental Services (DDS)-eligible numbers of autistic adults age 22 and up will double over the next five years, and triple over the next ten, to 42,000 individuals. And within 20 years our state will have more than 80,000 such adults with these severe forms of autism, and in need of a wide variety of services and housing. That’s up from about 3,000 just 25 years ago.
Our DDS system has not remotely kept pace with the staggering scope of this epidemic of severe disability—a disability that will soon represent nearly half of all DDS cases. Please understand that for the most part we are talking about mentally disabled individuals incapable of caring for themselves, incapable of earning a living, and often exhibiting difficult behaviors and severe functional limitations requiring 24/7 care and supervision. For the burgeoning adult autism population, Developmental Services are not a luxury or even a civil rights issue, but a basic, fundamental lifeline without which this population simply cannot function or survive. Expanding our Developmental Services system to address their needs is not a question, it’s an imperative.
We realize there is nothing politically sexy in spending money on expanding provision for basic, necessary human services for the severely disabled. But this is exactly what we must do; there is really no pragmatic, legal or moral choice. Given that the general fund will only cough up so much toward such an overwhelming bill, and the unequivocal need to fund ever more community-based services and housing (and/or to make services and housing cost a lot less), we suggest these out-of-the-box proposals to boost the bottom line for community-based DD services and housing:
(1) Exempting all adult DD-serving housing and programs from property taxes (conferring a distinct and important advantage of Developmental Centers of no property taxes for developmentally disabled adults incapable of earning a living). This would decrease the cost of services while the incentives and benefits would be shared by all communities without a general tax increase.
(2) Creating a state policy giving priority for HUD and other housing vouchers to adults with severe developmental disabilities, and ensuring sufficient quantity of vouchers (again, conferring a distinct advantage of DC’s, subsidized rent, on community-based facilities). This is legal and permissible pursuant to HUD Guidance, Notice PIH-2012-31 (HA) issued June 29, 2012, granting discretion to give priority to residents deemed to be at serious risk of institutionalization.
(3) Invigorating the DD-serving nonprofit sector through income tax credits. Our autism- and DD-serving adult day programs and housing programs provide urgent, basic human services, which are in notoriously short supply. To strengthen the organizations that provide essential services to the severely disabled, we must create special tax incentives for private donors. Tax credits are a simple way to effectuate this.
(4) Other incentives for private investors and nonprofits to create community-based DD services and housing, including priority, below-market lease of public lands. Social Impact Bonds may provide another incentive for investors. Also, policies allowing parents to donate homes to nonprofits providing DD housing, while still allowing the DD adult child to remain in the home (“Legacy Homes”), should be created. Our Government Code could also be amended to require municipal set-asides for adults with severe developmental disabilities.
(5) Eliminate costly and unnecessary barriers to community-based living. For example, the current policy prohibiting supported living services in the home of an autistic adult, if also occupied by parents, has the effect of requiring the parents or government to expend huge sums of money on rental or owned housing apart from the parental home. This policy also has the bizarre and plainly unjust effect of focusing SLS services on wealthier clients who can afford their own residences. Another cost reduction tools would be legislation protecting DD families and group homes from costly lawsuits which are commonly used by community members to thwart creation of disability or group homes in neighborhoods. Finally, it’s essential that California implement Medicaid HCBS to maximize all options and opportunities for housing—more restrictions pile on more obstacles and cost; the bottom line must be broadening individual choice, not limiting allowable settings.
(6) A dedicated funding stream for DDS services. Due to the growing impact of the autism explosion, it’s time to identify a source of dedicated funds, perhaps through a sales tax or property tax, going directly to fund DDS adult services. In addition, though a smaller source of funds, all DC property proceeds and income should be dedicated to support the DDS community population.
(7) Our state can’t do it alone, and California, like any other state, has an interest in not attracting service-seeking immigration, especially given the extremely high costs of supporting adults with autism. At the end of the day, funding for the intensive lifespan needs of adult autism must be primarily a federal task. The state should appeal directly to the federal government to augment its programs to support the crush of autistic adults in need of programs and housing.
California maintains the best autism data in the country, data the paints a shocking, terrifying picture. Yet the state has done precious little to share its powerful data with decisionmakers at the federal level. This must change: we are suffering a state of emergency in a near-complete, inexcusable, silence. Part of the Legislature’s job of boosting Developmental Services must be communicating the scope of our growing social services disaster to the federal government.
Thank you for your consideration of our comments.
Very truly yours,
Jill Escher
President
cc: Diana Dooley, secretary, California Department Health and Human Services
Santi Rogers, director, Department of Developmental Services
Eillen Richey, executive director, Association of Regional Center Agencies
Tony Anderson, executive director, the Arc of California
Beth Burt, president, Autism Society of California
PO Box 249
San Mateo, CA 94401
Senate Committee Members:
Ed Hernandez, Chair
Mike Morrell, Vice Chair
Joel Anderson
Jim Beall
Isadore Hall, III
Mark Leno
Mike McGuire
Holly J. Mitchell
Bill Monning
John M. W. Moorlach
Jim Nielsen
Richard Pan
Lois Wolk
Assemby Committee Members:
Rob Bonta, Chair
Brian Maienschein, Vice Chair
Catharine B. Baker
Susan A. Bonilla
Nora Campos
Eduardo Garcia
Marc Levine
Chad Mayes
Miguel Santiago
Marc Steinorth
Mark Stone
Tony Thurmond
Jim Wood
August 17, 2015
Re: Public Comment for Senate and Assembly Hearings, Special Session, August 18, 2015
Dear Members of the Special Session Legislative Committees:
We are writing to address the elephant in the room of today’s efforts to save California’s Developnental Services system from collapse: our state’s autism explosion. California’s population of dependent and disabled adults with autism is soaring. The Department of Developmental Services (DDS)-eligible numbers of autistic adults age 22 and up will double over the next five years, and triple over the next ten, to 42,000 individuals. And within 20 years our state will have more than 80,000 such adults with these severe forms of autism, and in need of a wide variety of services and housing. That’s up from about 3,000 just 25 years ago.
Our DDS system has not remotely kept pace with the staggering scope of this epidemic of severe disability—a disability that will soon represent nearly half of all DDS cases. Please understand that for the most part we are talking about mentally disabled individuals incapable of caring for themselves, incapable of earning a living, and often exhibiting difficult behaviors and severe functional limitations requiring 24/7 care and supervision. For the burgeoning adult autism population, Developmental Services are not a luxury or even a civil rights issue, but a basic, fundamental lifeline without which this population simply cannot function or survive. Expanding our Developmental Services system to address their needs is not a question, it’s an imperative.
We realize there is nothing politically sexy in spending money on expanding provision for basic, necessary human services for the severely disabled. But this is exactly what we must do; there is really no pragmatic, legal or moral choice. Given that the general fund will only cough up so much toward such an overwhelming bill, and the unequivocal need to fund ever more community-based services and housing (and/or to make services and housing cost a lot less), we suggest these out-of-the-box proposals to boost the bottom line for community-based DD services and housing:
(1) Exempting all adult DD-serving housing and programs from property taxes (conferring a distinct and important advantage of Developmental Centers of no property taxes for developmentally disabled adults incapable of earning a living). This would decrease the cost of services while the incentives and benefits would be shared by all communities without a general tax increase.
(2) Creating a state policy giving priority for HUD and other housing vouchers to adults with severe developmental disabilities, and ensuring sufficient quantity of vouchers (again, conferring a distinct advantage of DC’s, subsidized rent, on community-based facilities). This is legal and permissible pursuant to HUD Guidance, Notice PIH-2012-31 (HA) issued June 29, 2012, granting discretion to give priority to residents deemed to be at serious risk of institutionalization.
(3) Invigorating the DD-serving nonprofit sector through income tax credits. Our autism- and DD-serving adult day programs and housing programs provide urgent, basic human services, which are in notoriously short supply. To strengthen the organizations that provide essential services to the severely disabled, we must create special tax incentives for private donors. Tax credits are a simple way to effectuate this.
(4) Other incentives for private investors and nonprofits to create community-based DD services and housing, including priority, below-market lease of public lands. Social Impact Bonds may provide another incentive for investors. Also, policies allowing parents to donate homes to nonprofits providing DD housing, while still allowing the DD adult child to remain in the home (“Legacy Homes”), should be created. Our Government Code could also be amended to require municipal set-asides for adults with severe developmental disabilities.
(5) Eliminate costly and unnecessary barriers to community-based living. For example, the current policy prohibiting supported living services in the home of an autistic adult, if also occupied by parents, has the effect of requiring the parents or government to expend huge sums of money on rental or owned housing apart from the parental home. This policy also has the bizarre and plainly unjust effect of focusing SLS services on wealthier clients who can afford their own residences. Another cost reduction tools would be legislation protecting DD families and group homes from costly lawsuits which are commonly used by community members to thwart creation of disability or group homes in neighborhoods. Finally, it’s essential that California implement Medicaid HCBS to maximize all options and opportunities for housing—more restrictions pile on more obstacles and cost; the bottom line must be broadening individual choice, not limiting allowable settings.
(6) A dedicated funding stream for DDS services. Due to the growing impact of the autism explosion, it’s time to identify a source of dedicated funds, perhaps through a sales tax or property tax, going directly to fund DDS adult services. In addition, though a smaller source of funds, all DC property proceeds and income should be dedicated to support the DDS community population.
(7) Our state can’t do it alone, and California, like any other state, has an interest in not attracting service-seeking immigration, especially given the extremely high costs of supporting adults with autism. At the end of the day, funding for the intensive lifespan needs of adult autism must be primarily a federal task. The state should appeal directly to the federal government to augment its programs to support the crush of autistic adults in need of programs and housing.
California maintains the best autism data in the country, data the paints a shocking, terrifying picture. Yet the state has done precious little to share its powerful data with decisionmakers at the federal level. This must change: we are suffering a state of emergency in a near-complete, inexcusable, silence. Part of the Legislature’s job of boosting Developmental Services must be communicating the scope of our growing social services disaster to the federal government.
Thank you for your consideration of our comments.
Very truly yours,
Jill Escher
President
cc: Diana Dooley, secretary, California Department Health and Human Services
Santi Rogers, director, Department of Developmental Services
Eillen Richey, executive director, Association of Regional Center Agencies
Tony Anderson, executive director, the Arc of California
Beth Burt, president, Autism Society of California
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