PO Box 249
San Mateo, CA 94401
Hon. Secretary Diana S. Dooley
California Health and Human Services
1600 Ninth Street, Room 460
Sacramento, CA 95814
December 15, 2014
Re: Public Comment for December 16, 2014 Developmental Services Task Force Meeting
Dear Honorable Secretary Dooley and Members of the DS Task Force:
Thank you again for your efforts to plan for what will inevitably be a massive expansion of community-based services to serve the more than quarter-million Californians with developmental disabilities, only a small fraction of whom have ever resided in institutions, and an ever-growing percentage of whom have autism. We would like to submit the following comments regarding the four general workgroup topics presented by the Secretary:
Rates/Rate Structure (December 2014 and February 2015)
In the San Francisco Bay Area, the inadequate, long-stagnant rates and “median” rate structure has been disastrous for our service providers. Group homes are shuttering, day programs are running at deficits, and, absent massive capital campaigns to access scant private funds, autism-serving organizations cannot afford to expand or enter the field despite ever-mounting demand, particularly for services for young adults with autism.
Developing a dependable adult autism infrastructure rests upon realistic vendor rates. Adult autism care can be extremely difficult work requiring highly trained and supervised staff, and high staff:client ratios. Our rate structure must reflect this reality while also considering cost-of-living and cost-of-real-estate in regions such as the Bay Area. A system relying on usual and customary rates based on the geographic area could be applied in lieu of the median rate structure. In addition, because high-quality providers need a sustainable business model, we support Senator Beall’s call for a 10% rate increase as a short-term fix.
Caseload Ratios/Regional Center Operations (January and March 2015)
As adults with autism age out of school in ever-growing numbers, and as their aging parents
increasingly cannot provide day-to-day care, we request that Regional Center staffing and philosophy be returned to the original concept as a social service agency providing hands-on, caring and individualized case management. Funding cuts have reduced RCs, which are meant to safeguard the lives of California’s cognitively and functionally dependent adults, to the mere role of overwhelmed gatekeeper of a stressed budget. The pressing need for vigorous case management also means the new Self Determination law should be available to fill the gaps caused by the de-facto dismantling of the caseworker system.
Medical & Mental Health Services & Supports (discussion date TBD)
Our generic medical system is clearly unprepared to serve the medical, dental, and mental health needs of the growing population of adults with autism. Primary care providers and specialists are generally not trained to serve those with extremely low cognition, disruptive behaviors, aggression, or lack of communication. Adults with autism often end up in emergency rooms that are unequipped to handle their behaviors or disruptions. These disabled adults are often restrained, drugged, provided inadequate medical care, incarcerated, or placed under 5150.
Our collective negligence in providing a responsive medical care system has in essence criminalized the biological phenomenon of neurodevelopmental abnormality. But the more than 73,000 Californians with more severe forms of autism are obviously not criminals, and they need responsive community-based medical care for their lifetimes. The Blue Ribbon Commission on Autism discussed the appalling lack of services in this area, especially mental health and behavioral crisis services for adults. Yet, to date, nothing has been done.
Housing & Employment (discussion date TBD)
Fundamental to creating a statewide plan for supported housing, adult day programs, and employment is conducting a Statewide Adult Autism Needs Assessment based on DDS data. Within ten years, if not sooner, autism will represent nearly half of all RC cases. How many clients with autism age out of the school system each year? Statewide, and within each county? How many are considered difficult-to-serve, with severe behaviors and in need of intensive supports and day programs, including 1:1 ratios? How many are expected to need supported housing over the next 20 years? What type of housing, with what supervision and supports? This information is essential, easy to access through DDS, and should be provided to the public and the Task Force members in the form of a Statewide Adult Autism Needs Assessment.
Thank you, as always, for your consideration of our comments.
Very truly yours,