Autism Society San Francisco Bay Area
PO Box 249
San Mateo, CA 94401
(650) 637-7772
California Department of Health Care Services
Via email to STP@dhcs.ca.gov
Long-Term Care Division, STP Comments
1501 Capitol Avenue, MS 4503
P.O. Box 997437
Sacramento, CA 95899-7437
July 30, 2015
Re: Public Comment on Statewide Transition Plan (STP): The Urgent Need to Remove the Chilling Effect on Desperately Needed Special-Needs Housing in California
Dear Department of Health Care Services:
We are writing with an urgent request.
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 supportive housing solutions. Nearly all of these people are incapable of caring for themselves or earning a living.
But tragically, as the need and desperation mounts, some people’s reading of the well-intended Medicaid Home and Community Based Services (HCBS) regulations (which are emphatically outcome-oriented and not settings-oriented) is having the completely unnecessary effect of quashing hope for innovation and proliferation of supported housing options in our state. Already regional centers are informing vendors and families of severely disabled children and adults that they will not support anything but generic, scattered-site urban housing. They claim unsubstantiated quotas limiting the number of people with DD who can live together, or even object to minor project design or program elements, citing nothing more than a vague and unsupported fear of the “heightened scrutiny” process. This unfounded fear, which has no support in the actual letter or spirit of the law, is having the devastating effect of holding hostage hopes for expansion of special-needs housing that address the intensive needs of California’s ASD adult population even as that population explodes.
We therefore ask that the STP explicitly and unequivocally recognize the appropriateness of intentionally autism-friendly supportive housing solutions, limiting its "heightened scrutiny" to the HCBS end goal of optimizing autonomy, independence, and consumer choice. Aside from the unprecedented explosion in our adult ASD population, here are just a few of the reasons why this is necessary:
• Basic Civil Rights. The word and spirit of HCBS is about removing coercion and forced isolation and segregation of people with developmental disabilities. This must also be California’s focus: our STP must focus on fulfilling the person-centered plan of the IPP and respecting the choices of the individual and, where applicable, the choice of those who love and care for him/her and are duly appointed to render decisions on the individual’s behalf. Any notion of basic civil rights requires that those with developmental disabilities must have available to them as many options as are available to those without developmental disabilities, including specialized settings that suit their needs. If a person without a disability chooses to live on a farm, a ranch, or in a congregate setting (as millions of non-disabled people chose to do), then people with disabilities must be able to avail themselves of the same options, without risking loss of basic, essential support services.1 Anything less than that is rank, intolerable deprivation of basic civil rights and equal protection. Respecting the choices of those with disabilities, including their conservators and others with the legal duty to act in their best interests, must trump any paternalistic mandate for particular types of setting.2
• The Imperative for Special Amenities. Many people with developmental disabilities, and particularly DDS-eligible autism, require special amenities due to the nature or severity of their disabilities. These specialized amenities may include outdoor space, distance from neighbors, safety fencing, room for aides and staff, behavior interventions, community rooms for onsite programs, outdoor proprioceptive and sensory equipment such as swings, trampolines, hot tubs, and swimming pools, and specialized materials and landscaping resistant to damage. Unlike scattered-site off-the-shelf housing, autism-friendly congregate housing can offer these crucial amenities, and these amenities must be encouraged in the STP, not extinguished by wildly overbroad interpretations of “institutional.” We cannot allow trendy disability euphemisms mask the often intensive support needs of this population.
• Generic Housing Can Isolate and Hinder Community Access. Adults with DDS-eligible autism often have limited capacity for self-directed involvement in the community without maximum support. Access to the community is emphatically an artifact of the IPP, staff training, program structure, funding, and transportation availability, not of “setting.” One can live on a 5-acre farm and have full access to the local community, or live in a 600 square-foot apartment and be essentially trapped inside it with a single underpaid and untrained caregiver, or no caregiver, and no transportation, all while the landlord threatens eviction for noise, disruption and property damage. Where one sleeps has nothing to do with the ability to take part in the greater community.
“Community” is not the mere physical presence of other buildings and people. It includes a safe and purposeful environment where individuals have needed support and safety, and the greatest freedom to live productive, connected lives according to their own desires.
• Adults with Severe Forms of ASD Need Built-in Protection from Abuse. Protection from abuse is critical: minimally verbal adults with more severe forms of autism often have functional abilities of toddlers, coupled with extreme sexual and physical vulnerability. Isolation in generic apartments or small homes can raise risk for abuse. With 80,000 people with significantly impaired verbal and functional skills in need of supportive housing, every effort must be made to encourage environments that promote transparency and reduce vulnerability to abuse, including customized settings providing open design and ample supervision, guided by a positive cultural mission (an element missing in scattered housing) and ongoing training (also missing in scattered housing).
• Financial Infeasibility and Discrimination. Another elephant in the room of California’s autism housing debacle is costs and discrimination. Due to prohibitive housing costs coupled with a failure of government programs to create any plan whatsoever for autism housing, there are currently virtually no viable options for creating new autism housing in the Bay Area and many other parts of our state, in spite of an ever-mounting need. Outrageous costs, coupled with discrimination against the autistic and developmentally disabled, means most ASD adults have no access to housing at all. This situation will only worsen as parents age and become incapable of providing housing and care for their adult children. Furthermore, fear of misguided “heightened scrutiny” now means vendors and families cannot create financially viable projects due to lack of economy of scale: it becomes impossible for vendors and parents to form collaborative efforts due to artificially elevated costs which are arbitrarily imposed for no citable legal or regulatory reason. This runs directly counter to the intent of the HCBS rules change and cannot be tolerated in a state with such pressing demand for more, not fewer, options for its burgeoning ASD adult population.
In sum, California’s handling of the STP thus far is unleashing a torrent of unintended consequences which are proving disastrous for California’s ever-growing population of dependent and disabled adults with autism. It is turning our growing ranks of severely disabled into second-class citizens by raising costs, limiting options, and requiring them to jump through additional bureaucratic hoops in order to live in the settings of their choosing, appropriate for their needs, and that meet their own person-centered selection criteria. Without any plans or budget to create new housing opportunities, coupled with the unintended chilling effect of HCBS, California’s ever-skyrocketing population of adults with autism face a truly horrifying future. California’s HCBS—to the extent it may de facto curtail housing choices—is amounting to a wholesale denial of services to adults with substantially disabling autism.
What is the solution? It’s simple. As the Center for Medicaid Services HCBS Fact Sheet states, “this final rule establish[es] a more outcome-oriented definition of home and community-based settings, rather than one based solely on a setting’s location, geography, or physical characteristics.” Our STP must clarify that disability-friendly housing options are welcome so long as they are the choice of the consumer and reflect their desired experience of community and inclusion. Regional centers should not be able to employ a baseless worry about “heightened scrutiny,” or arbitrary criteria not found in the regulations, to squelch exceedingly urgent new housing or program efforts.
Very truly yours,
PO Box 249
San Mateo, CA 94401
(650) 637-7772
California Department of Health Care Services
Via email to STP@dhcs.ca.gov
Long-Term Care Division, STP Comments
1501 Capitol Avenue, MS 4503
P.O. Box 997437
Sacramento, CA 95899-7437
July 30, 2015
Re: Public Comment on Statewide Transition Plan (STP): The Urgent Need to Remove the Chilling Effect on Desperately Needed Special-Needs Housing in California
Dear Department of Health Care Services:
We are writing with an urgent request.
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 supportive housing solutions. Nearly all of these people are incapable of caring for themselves or earning a living.
But tragically, as the need and desperation mounts, some people’s reading of the well-intended Medicaid Home and Community Based Services (HCBS) regulations (which are emphatically outcome-oriented and not settings-oriented) is having the completely unnecessary effect of quashing hope for innovation and proliferation of supported housing options in our state. Already regional centers are informing vendors and families of severely disabled children and adults that they will not support anything but generic, scattered-site urban housing. They claim unsubstantiated quotas limiting the number of people with DD who can live together, or even object to minor project design or program elements, citing nothing more than a vague and unsupported fear of the “heightened scrutiny” process. This unfounded fear, which has no support in the actual letter or spirit of the law, is having the devastating effect of holding hostage hopes for expansion of special-needs housing that address the intensive needs of California’s ASD adult population even as that population explodes.
We therefore ask that the STP explicitly and unequivocally recognize the appropriateness of intentionally autism-friendly supportive housing solutions, limiting its "heightened scrutiny" to the HCBS end goal of optimizing autonomy, independence, and consumer choice. Aside from the unprecedented explosion in our adult ASD population, here are just a few of the reasons why this is necessary:
• Basic Civil Rights. The word and spirit of HCBS is about removing coercion and forced isolation and segregation of people with developmental disabilities. This must also be California’s focus: our STP must focus on fulfilling the person-centered plan of the IPP and respecting the choices of the individual and, where applicable, the choice of those who love and care for him/her and are duly appointed to render decisions on the individual’s behalf. Any notion of basic civil rights requires that those with developmental disabilities must have available to them as many options as are available to those without developmental disabilities, including specialized settings that suit their needs. If a person without a disability chooses to live on a farm, a ranch, or in a congregate setting (as millions of non-disabled people chose to do), then people with disabilities must be able to avail themselves of the same options, without risking loss of basic, essential support services.1 Anything less than that is rank, intolerable deprivation of basic civil rights and equal protection. Respecting the choices of those with disabilities, including their conservators and others with the legal duty to act in their best interests, must trump any paternalistic mandate for particular types of setting.2
• The Imperative for Special Amenities. Many people with developmental disabilities, and particularly DDS-eligible autism, require special amenities due to the nature or severity of their disabilities. These specialized amenities may include outdoor space, distance from neighbors, safety fencing, room for aides and staff, behavior interventions, community rooms for onsite programs, outdoor proprioceptive and sensory equipment such as swings, trampolines, hot tubs, and swimming pools, and specialized materials and landscaping resistant to damage. Unlike scattered-site off-the-shelf housing, autism-friendly congregate housing can offer these crucial amenities, and these amenities must be encouraged in the STP, not extinguished by wildly overbroad interpretations of “institutional.” We cannot allow trendy disability euphemisms mask the often intensive support needs of this population.
• Generic Housing Can Isolate and Hinder Community Access. Adults with DDS-eligible autism often have limited capacity for self-directed involvement in the community without maximum support. Access to the community is emphatically an artifact of the IPP, staff training, program structure, funding, and transportation availability, not of “setting.” One can live on a 5-acre farm and have full access to the local community, or live in a 600 square-foot apartment and be essentially trapped inside it with a single underpaid and untrained caregiver, or no caregiver, and no transportation, all while the landlord threatens eviction for noise, disruption and property damage. Where one sleeps has nothing to do with the ability to take part in the greater community.
“Community” is not the mere physical presence of other buildings and people. It includes a safe and purposeful environment where individuals have needed support and safety, and the greatest freedom to live productive, connected lives according to their own desires.
• Adults with Severe Forms of ASD Need Built-in Protection from Abuse. Protection from abuse is critical: minimally verbal adults with more severe forms of autism often have functional abilities of toddlers, coupled with extreme sexual and physical vulnerability. Isolation in generic apartments or small homes can raise risk for abuse. With 80,000 people with significantly impaired verbal and functional skills in need of supportive housing, every effort must be made to encourage environments that promote transparency and reduce vulnerability to abuse, including customized settings providing open design and ample supervision, guided by a positive cultural mission (an element missing in scattered housing) and ongoing training (also missing in scattered housing).
• Financial Infeasibility and Discrimination. Another elephant in the room of California’s autism housing debacle is costs and discrimination. Due to prohibitive housing costs coupled with a failure of government programs to create any plan whatsoever for autism housing, there are currently virtually no viable options for creating new autism housing in the Bay Area and many other parts of our state, in spite of an ever-mounting need. Outrageous costs, coupled with discrimination against the autistic and developmentally disabled, means most ASD adults have no access to housing at all. This situation will only worsen as parents age and become incapable of providing housing and care for their adult children. Furthermore, fear of misguided “heightened scrutiny” now means vendors and families cannot create financially viable projects due to lack of economy of scale: it becomes impossible for vendors and parents to form collaborative efforts due to artificially elevated costs which are arbitrarily imposed for no citable legal or regulatory reason. This runs directly counter to the intent of the HCBS rules change and cannot be tolerated in a state with such pressing demand for more, not fewer, options for its burgeoning ASD adult population.
In sum, California’s handling of the STP thus far is unleashing a torrent of unintended consequences which are proving disastrous for California’s ever-growing population of dependent and disabled adults with autism. It is turning our growing ranks of severely disabled into second-class citizens by raising costs, limiting options, and requiring them to jump through additional bureaucratic hoops in order to live in the settings of their choosing, appropriate for their needs, and that meet their own person-centered selection criteria. Without any plans or budget to create new housing opportunities, coupled with the unintended chilling effect of HCBS, California’s ever-skyrocketing population of adults with autism face a truly horrifying future. California’s HCBS—to the extent it may de facto curtail housing choices—is amounting to a wholesale denial of services to adults with substantially disabling autism.
What is the solution? It’s simple. As the Center for Medicaid Services HCBS Fact Sheet states, “this final rule establish[es] a more outcome-oriented definition of home and community-based settings, rather than one based solely on a setting’s location, geography, or physical characteristics.” Our STP must clarify that disability-friendly housing options are welcome so long as they are the choice of the consumer and reflect their desired experience of community and inclusion. Regional centers should not be able to employ a baseless worry about “heightened scrutiny,” or arbitrary criteria not found in the regulations, to squelch exceedingly urgent new housing or program efforts.
Very truly yours,
Jill Escher
President
cc: Diana Dooley, secretary, California Department Health and Human Services
Members of the Developmental Services Task Force (via Jim Suennen)
Santi Rogers, director, Department of Developmental Services
Eillen Richey, executive director, Association of Regional Center Agencies
Tony Anderson, executive director, the Arc of California
Javier Zaldivar, executive director, San Andreas Regional Center
Jim Shorter, executive director, Golden Gate Regional Center
Jim Burton, executive director, Regional Center of the East Bay
Bob Hamilton, executive director, North Bay Regional Center
Beth Burt, president, Autism Society of California
Scott Badesch, executive director, Autism Society of America
Desiree Kameka, director of communication and advocacy, Madison House Autism Foundation
Lisa Goring, executive vice president, Programs and Services, Autism Speaks
Catherine Blakemore, executive director, Disability Rights California
Deborah Doctor, legislative advocate, Disability Rights California
Marty Omoto, CDCAN
President
cc: Diana Dooley, secretary, California Department Health and Human Services
Members of the Developmental Services Task Force (via Jim Suennen)
Santi Rogers, director, Department of Developmental Services
Eillen Richey, executive director, Association of Regional Center Agencies
Tony Anderson, executive director, the Arc of California
Javier Zaldivar, executive director, San Andreas Regional Center
Jim Shorter, executive director, Golden Gate Regional Center
Jim Burton, executive director, Regional Center of the East Bay
Bob Hamilton, executive director, North Bay Regional Center
Beth Burt, president, Autism Society of California
Scott Badesch, executive director, Autism Society of America
Desiree Kameka, director of communication and advocacy, Madison House Autism Foundation
Lisa Goring, executive vice president, Programs and Services, Autism Speaks
Catherine Blakemore, executive director, Disability Rights California
Deborah Doctor, legislative advocate, Disability Rights California
Marty Omoto, CDCAN
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