Autism Society San Francisco Bay Area
PO Box 249
San Mateo, CA 94401
(650) 637-7772
[email protected]
Hon. Secretary Diana S. Dooley
California Health and Human Services
1600 Ninth Street, Room 460
Sacramento, CA 95814
(via [email protected])
June 5, 2015
Re: Public Comment for June 5, 2015 Developmental Services Task Force Meeting
Dear Honorable Secretary Dooley and Members of the DS Task Force:
Thank you again for your efforts to lay conceptual groundwork to fortify and expand community-based services for the more than quarter-million Californians with developmental disabilities, an ever-growing percentage of whom have autism.
Given the staggering growth in California’s adult autism cases (doubling in next five years, tripling in the next ten, to about 42,000), combined with the already severe strains on our beleaguered community-based system, we are facing a social services crisis of the highest order. The DDS autism population are not high-functioning individuals like Temple Grandin, Ari Ne’eman, or John Robinson. They are for the most part devastatingly 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 population incapacitated by autism, community services are not luxury items, but necessary for fundamental stability and basic survival. Parents can and will help, but as they age will become increasingly unable to provide basic care and oversight for their grown children who need assistance with nearly every aspect of their lives, including meals, dressing, communication, hygiene, finances, basic life skills, work and recreation.
The Task Force has broad discretion over its advisory output. We urge this group to not merely reshuffle cards in the DDS system — a system that was not only designed for a much smaller DD population, but one without the complex, intensive needs presented by the autism tsunami — but instead to take a bold stance about the need for change.
What change? We must simultaneously reduce the costs of taking care of these people in the community and find new sources of funding. The economics of the current model lead to the impoverishment of families and the disabled adults vulnerable to re-institutionalization at the mercy of the state. Indeed, the DDS community has already noticed that as this wave of ASD adults is hitting, our current model is breaking.
Without question, adult autism is expensive, usually between $25,000 and $250,000 per case per year. Note that in 10 years, with 42,000 DDS adult (age 22+) autism cases, the annual DDS bill, at a conservatively estimated $50,000 average per capita, will easily exceed $2 billion per year.
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 the advantage of DC’s of no property tax requirement on community-based programs). 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).
(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 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 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 Task Force 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.
Thank you, as always, for your consideration of our comments.
Very truly yours,
Jill Escher
President
PO Box 249
San Mateo, CA 94401
(650) 637-7772
[email protected]
Hon. Secretary Diana S. Dooley
California Health and Human Services
1600 Ninth Street, Room 460
Sacramento, CA 95814
(via [email protected])
June 5, 2015
Re: Public Comment for June 5, 2015 Developmental Services Task Force Meeting
Dear Honorable Secretary Dooley and Members of the DS Task Force:
Thank you again for your efforts to lay conceptual groundwork to fortify and expand community-based services for the more than quarter-million Californians with developmental disabilities, an ever-growing percentage of whom have autism.
Given the staggering growth in California’s adult autism cases (doubling in next five years, tripling in the next ten, to about 42,000), combined with the already severe strains on our beleaguered community-based system, we are facing a social services crisis of the highest order. The DDS autism population are not high-functioning individuals like Temple Grandin, Ari Ne’eman, or John Robinson. They are for the most part devastatingly 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 population incapacitated by autism, community services are not luxury items, but necessary for fundamental stability and basic survival. Parents can and will help, but as they age will become increasingly unable to provide basic care and oversight for their grown children who need assistance with nearly every aspect of their lives, including meals, dressing, communication, hygiene, finances, basic life skills, work and recreation.
The Task Force has broad discretion over its advisory output. We urge this group to not merely reshuffle cards in the DDS system — a system that was not only designed for a much smaller DD population, but one without the complex, intensive needs presented by the autism tsunami — but instead to take a bold stance about the need for change.
What change? We must simultaneously reduce the costs of taking care of these people in the community and find new sources of funding. The economics of the current model lead to the impoverishment of families and the disabled adults vulnerable to re-institutionalization at the mercy of the state. Indeed, the DDS community has already noticed that as this wave of ASD adults is hitting, our current model is breaking.
Without question, adult autism is expensive, usually between $25,000 and $250,000 per case per year. Note that in 10 years, with 42,000 DDS adult (age 22+) autism cases, the annual DDS bill, at a conservatively estimated $50,000 average per capita, will easily exceed $2 billion per year.
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 the advantage of DC’s of no property tax requirement on community-based programs). 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).
(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 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 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 Task Force 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.
Thank you, as always, for your consideration of our comments.
Very truly yours,
Jill Escher
President
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