Autism Society San Francisco Bay Area
PO Box 249
San Mateo, CA 94401
California Department of Health Care Services, via email to [email protected]
P.O. Box 997413
Sacramento, CA 95899-7413
December 8, 2014
Re: Public Comment on Statewide Transition Plan
Dear Department of Health Care Services:
We appreciate this opportunity to provide additional comments on the Statewide Transition Plan. Over time, all 73,000 individuals with DDS-eligible autism — and the number is now growing by nearly 5,000 every year — will need supported housing sustained at least in part by Medicaid waivers.
We therefore ask that the STP recognize the appropriateness of intentionally autism-friendly supportive housing solutions, some of which may be congregate in nature. This is why:
1. Unlike scattered-site housing, autism-friendly congregate housing can offer crucial amenities such as programming, an environment of acceptance of behaviors, structured activities or vocational opportunities, onsite supervision, staff training, safety features, social opportunities, and physical amenities such as sensory equipment, pools, swings, and ample open space.
2. The assumption that someone with autism will have the automatic opportunity for community immersion by simply living in a generic home or apartment in the community is inaccurate. In our experience, generic housing units, while appropriate for many with autism who live with caregivers, can be isolating and dangerous for others.
3. Protection is a critical factor: minimally verbal adults with more severe forms of autism often have functional abilities of toddlers, coupled with extreme sexual and physical vulnerability. Protection of these adults must be a paramount concern, and that may require highly supervised and protected residential settings. Some of these may be congregate in nature.
4. Another crucial issue is costs. Due to prohibitive housing costs coupled with a failure of government programs to provide for autism housing, there are currently virtually no viable options for creating new autism housing in the Bay Area, in spite of an ever-mounting demand. Any “chilling effect” on new, innovative housing projects created by a restrictive STP could be catastrophic for the adult autism community. 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—to the extent it may essentially requires this form of setting to qualify for services—could amount to a wholesale denial of services to adults with substantially disabling autism, particularly those in the middle to lower SES.
The STP should support full access to the greater community. But community access is a matter of programming, training, and transportation, and not of “setting.” The STP should acknowledge that person-centered planning requires a very broad range of housing solutions, including those that may exist in a cluster, on a farm, in a gated community, or within a caring group home. These are not equivalent to old-style “institutions” and should not be presumed in violation of anyone’s civil rights so long as the individuals is thriving in that setting and desirous of remaining there.
Let’s put our energies in assuring quality of supports, opportunities and care, as well as an ample array of options suitable for every need, and not into restricting types of housing available to severely disabled adults, the numbers of whom are skyrocketing throughout our state.
We would also like to suggest that a representative from Autism Society San Francisco Bay Area serve on the survey teams that will be completing the assessments of settings.
We appreciate your consideration of our comments.
Very truly yours,