PO Box 249
San Mateo, CA 94401
(650) 637-7772
California Department of Health Care Services, via email to [email protected]
P.O. Box 997413
Sacramento, CA 95899-7413
October 18, 2014
Re: Public Comment on Statewide Transition Plan to meet Federal HCBS parameters
Dear California Department of Health Care Services:
We appreciate this opportunity to comment on the Statewide Transition Plan emanating from the new federal Home and Community-Based Setting requirements. The STP comes at a time of crisis as California begins to address the challenge of providing a wide array of lifespan supports for the massive new population of dependent individuals disabled by autism. This large population bubble, now aging into adulthood, requires a flexible, diverse range of choices, and especially the option of congregate, autism-friendly customized housing solutions.
Since the 1980s, California has experienced a massive surge in autism cases. Today the Department of Developmental Services counts 72,000 individuals substantially disabled by autism, up from fewer than 5,000 only 25 years ago. At a local level, the greater Bay Area had about 800 RC-eligible autistic individuals in 1990, but now counts about 12,000.
Over time, all these 72,000 individuals — and the number grows by about 4,000 every year — will need supported housing. In particular, for the 31% considered by DDS to have severe behaviors, what realistic options are we providing? Given the challenges ahead, we cannot afford to create policy that ignores the intensive needs of the most rapidly growing swath of the developmental disability population, and one primarily suitable only for the higher functioning portion of the DD population.
Generic solutions are inappropriate or dangerous for many adults with autism
Autism often involves complex behavioral, cognitive, communication and sensory challenges that cannot be served in generic, lightly supported, isolated housing. For many with autism, an off-the-shelf housing environment is not always achievable owing to any combination of:
• Disruptive behaviors and aggression
• Risks of wandering and elopement
• Extremely low cognition and vulnerability
• Continuous property damage
• The need for a intentionally created, “built-in” social environment
• Risk of harm to self and others
• Loud noises and tantrums, sometimes at all hours
• Need for physical amenities such as yards, protected space, swings, sensory equipment, locked gates and other accommodations
• Need for ongoing supervision at multiple levels and specialized programming
• Pervasive and intense community opposition to having these residents as neighbors
• Landlords unwilling to rent units to those with disruptive behaviors or who damage property
• Limited options for transportation, and tremendous but unfunded transportation expenses
• Extreme sexual vulnerability, particularly for lower functioning nonverbal ASD females
• Abuse prevention is a key concern: wrap-around supervision and services provides a vehicle for preventing abuse
Given the realities of the need for supported autism housing for the intensively disabled, we ask that California recognize the appropriateness of intentionally autism-friendly supportive housing solutions, some of which may be congregate in nature. Unlike scattered-site housing, autism-friendly housing can offer crucial amenities such as:
• Onsite programming
• An environment of acceptance of extreme behaviors
• Structured activities or vocational opportunities
• Onsite supervision, staff training, and safety features
• Physical amenities such as sensory equipment such as pools and swings, and ample open space
Importantly, these housing solutions can offer protection, programming, and safety while at the same time permitting residents to engage in community life with the assistance of their caregivers. An autism-friendly living environment is in no way mutually exclusive to the concept of community access. While we agree that serving adults with autism in apartments or homes in urban or suburban neighborhoods is often an excellent solution for a portion of the autism population, an ever-broader array of intentional, custom solutions offering both onsite and offsite involvement are also clearly needed. fn1
Due to prohibitive costs, there are currently virtually no viable options for creating new autism housing in the Bay Area
Any HCBS implementation must also recognize that in certain parts of our state, including the Bay Area where one-bedroom apartments now rent for $2,400 per month, urban housing is so expensive that, absent government intervention that has thus far not been forthcoming, virtually no new community-based autism housing is currently viable.
Given that almost no RC-eligible autistic adult has sufficient income to own or rent his or her own apartment or home in the Bay Area, the HCBS program—by threatening to essentially require this form of tenancy as a prerequisite for services—could amount to a wholesale denial of services to adults with substantially disabling autism.
HCB settings in California must include intentionally autism-supportive living environments
In sum, we agree that HCBS should support full access to the greater community. But we disagree that this must translate into a de-facto mandate that all options for autism housing be restricted to scattered-site apartments and homes. We must provide the massive new population of individuals with autism and their families the right to select from among various setting options, including customized and congregate autism-friendly housing developments.
If a restrictive reading of HCBS is implemented, it could lead to the disaster of mass numbers of dependent, cognitively and behaviorally challenged young adults without viable, safe options for care or housing. Therefore, the centerpiece of a new system must be meaningful choice.
We appreciate your consideration of our comments.
Very truly yours,
/s/
Jill Escher
President
cc:
Santi Rogers, Department of Developmental Services
Developmental Services Task Force, via Jim Suennen
Diana Dooley, Secretary, California Department of Health and Human Services
Fn 1 Ironically, our region’s most popular housing projects for adults with developmental disabilities, such as Cedars of Marin and Kainos in Redwood City—places where developmentally disabled adults have lived enriched, safe, well-supervised and community-integrated lives for decades — could be rendered ineligible for funding under the new rules.
San Mateo, CA 94401
(650) 637-7772
California Department of Health Care Services, via email to [email protected]
P.O. Box 997413
Sacramento, CA 95899-7413
October 18, 2014
Re: Public Comment on Statewide Transition Plan to meet Federal HCBS parameters
Dear California Department of Health Care Services:
We appreciate this opportunity to comment on the Statewide Transition Plan emanating from the new federal Home and Community-Based Setting requirements. The STP comes at a time of crisis as California begins to address the challenge of providing a wide array of lifespan supports for the massive new population of dependent individuals disabled by autism. This large population bubble, now aging into adulthood, requires a flexible, diverse range of choices, and especially the option of congregate, autism-friendly customized housing solutions.
Since the 1980s, California has experienced a massive surge in autism cases. Today the Department of Developmental Services counts 72,000 individuals substantially disabled by autism, up from fewer than 5,000 only 25 years ago. At a local level, the greater Bay Area had about 800 RC-eligible autistic individuals in 1990, but now counts about 12,000.
Over time, all these 72,000 individuals — and the number grows by about 4,000 every year — will need supported housing. In particular, for the 31% considered by DDS to have severe behaviors, what realistic options are we providing? Given the challenges ahead, we cannot afford to create policy that ignores the intensive needs of the most rapidly growing swath of the developmental disability population, and one primarily suitable only for the higher functioning portion of the DD population.
Generic solutions are inappropriate or dangerous for many adults with autism
Autism often involves complex behavioral, cognitive, communication and sensory challenges that cannot be served in generic, lightly supported, isolated housing. For many with autism, an off-the-shelf housing environment is not always achievable owing to any combination of:
• Disruptive behaviors and aggression
• Risks of wandering and elopement
• Extremely low cognition and vulnerability
• Continuous property damage
• The need for a intentionally created, “built-in” social environment
• Risk of harm to self and others
• Loud noises and tantrums, sometimes at all hours
• Need for physical amenities such as yards, protected space, swings, sensory equipment, locked gates and other accommodations
• Need for ongoing supervision at multiple levels and specialized programming
• Pervasive and intense community opposition to having these residents as neighbors
• Landlords unwilling to rent units to those with disruptive behaviors or who damage property
• Limited options for transportation, and tremendous but unfunded transportation expenses
• Extreme sexual vulnerability, particularly for lower functioning nonverbal ASD females
• Abuse prevention is a key concern: wrap-around supervision and services provides a vehicle for preventing abuse
Given the realities of the need for supported autism housing for the intensively disabled, we ask that California recognize the appropriateness of intentionally autism-friendly supportive housing solutions, some of which may be congregate in nature. Unlike scattered-site housing, autism-friendly housing can offer crucial amenities such as:
• Onsite programming
• An environment of acceptance of extreme behaviors
• Structured activities or vocational opportunities
• Onsite supervision, staff training, and safety features
• Physical amenities such as sensory equipment such as pools and swings, and ample open space
Importantly, these housing solutions can offer protection, programming, and safety while at the same time permitting residents to engage in community life with the assistance of their caregivers. An autism-friendly living environment is in no way mutually exclusive to the concept of community access. While we agree that serving adults with autism in apartments or homes in urban or suburban neighborhoods is often an excellent solution for a portion of the autism population, an ever-broader array of intentional, custom solutions offering both onsite and offsite involvement are also clearly needed. fn1
Due to prohibitive costs, there are currently virtually no viable options for creating new autism housing in the Bay Area
Any HCBS implementation must also recognize that in certain parts of our state, including the Bay Area where one-bedroom apartments now rent for $2,400 per month, urban housing is so expensive that, absent government intervention that has thus far not been forthcoming, virtually no new community-based autism housing is currently viable.
Given that almost no RC-eligible autistic adult has sufficient income to own or rent his or her own apartment or home in the Bay Area, the HCBS program—by threatening to essentially require this form of tenancy as a prerequisite for services—could amount to a wholesale denial of services to adults with substantially disabling autism.
HCB settings in California must include intentionally autism-supportive living environments
In sum, we agree that HCBS should support full access to the greater community. But we disagree that this must translate into a de-facto mandate that all options for autism housing be restricted to scattered-site apartments and homes. We must provide the massive new population of individuals with autism and their families the right to select from among various setting options, including customized and congregate autism-friendly housing developments.
If a restrictive reading of HCBS is implemented, it could lead to the disaster of mass numbers of dependent, cognitively and behaviorally challenged young adults without viable, safe options for care or housing. Therefore, the centerpiece of a new system must be meaningful choice.
We appreciate your consideration of our comments.
Very truly yours,
/s/
Jill Escher
President
cc:
Santi Rogers, Department of Developmental Services
Developmental Services Task Force, via Jim Suennen
Diana Dooley, Secretary, California Department of Health and Human Services
Fn 1 Ironically, our region’s most popular housing projects for adults with developmental disabilities, such as Cedars of Marin and Kainos in Redwood City—places where developmentally disabled adults have lived enriched, safe, well-supervised and community-integrated lives for decades — could be rendered ineligible for funding under the new rules.
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