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California DDS Hits 75,000 Autism Cases; Now Approaching 5,000 DDS-Eligible Autism Births per Year

1/31/2015

According to state data, the California Department of Developmental Services as of December 2014 exceeds 75,000 cases of substantially disabling autism, a 2,500% increase over rates in the early 1980s. The is the strict definition used in the DDS system and does not include the broader spectrum of higher functioning individuals. Here we chart the growth over time, with notations from DDS official reports:

DDS data also indicate the state is nearing 5,000 DDS-eligible autism births per year, in other words, more than 13 autism births per day. These are developmentally disabled individuals with substantial functional limitations who are expected to need lifelong support. The system is completely unprepared to meet the lifespan needs of such a massive population of very significantly disabled persons, and the autism surge continues, unabated.

Note: The slight drop-off in the 2008 birth cohort is likely due to a usual delay in cases entering the system.

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Behaviors make the transition to adult living even more challenging

1/27/2015

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by Anne Blenman Hare

John Hare, 28, is a young adult well along on the autism spectrum. He is pictured here alongside his 3 neuro-typical siblings. Despite a life that presented challenges to every member of his family, and a very rough stage in John’s early 20s, when he was prone to aggressive “outbursts” that could include self-injurious behavior, he remains extremely close to his family and siblings, and they to him. “Young adult autism” is how we refer to that stage, because it seems to be a part of all too many lives on the spectrum. These kinds of behaviors can be a lifelong issue for many. Perhaps it’s simply the adult-sized individual that makes these so profoundly difficult, but these behaviors make the burden of transition to an adult living situation all the more challenging.

John and his family are searching for that living situation for him now. A meaningful life – one that allows him the opportunity to make a contribution to his community, and provides a place where he can live safely and with the benefit of community -- has not yet been found in the bay area. Although we feel extremely fortunate that these behaviors are now rare, they remain a possibility when the sensory overload provides no other outlet than physical, and they limit his options all the more.

After each episode, John grieves for hours, and it is a heart-wrenching experience. He sobs openly, apologizing in his own way, repeatedly saying “sowwy,” and it becomes all the more obvious how little control he has over his situation. Months, even years, may go by when John lives as John, enjoying “Blues Clues,” long walks with family and friends, outings to restaurants and the theater, and participation in the few opportunities he is afforded to make his own way in the world. Still, the possibility of his loss of control weighs upon us, and we acknowledge the challenges this brings to underfunded and overly burdened service organizations and the Regional Center.

When John was born in 1986, one in 10,000 was diagnosed with autism. The number now is one in 68. Regional Centers are dealing with the swelling numbers of young adults leaving the school system, and entering “adult services,” with profoundly little support from the state.

We firmly believe that with the right support and in the right place, John could make his contribution to his community. We also firmly believe that purpose and activity provide meaning to John, and to his peers. It is considered a “spectrum” because autism can present in so many different ways. Those with behavioral challenges require specialized and appropriate support and services, yet even as the numbers entering adult services grow, services are cut.

I often wonder if the outbursts are despair and grief that manifest physically, as he makes his way in a world that cannot accommodate him. The loss of his school community, of education and the daily, meaningful activities afforded when in school, also plays a part. Once school ends, the young adult seemingly falls off a cliff – families are left to sculpt something together from the “warehousing” programs that pass for a day’s activities, and with nothing from 2:00 pm or 3:00 pm onward, when they are shipped back home. The programs that do offer more are full to capacity, with impossibly long waiting lists.

Surely, we can do better than this, and I urge all parents with a child or children on the spectrum to become more politically active and make your voices heard. Information is available at sfautismsociety.org. Look for a list of specific things you can do in upcoming blogs.

John's family continues to search for an appropriate place for him. His family would very much like to hear from others facing similar challenges.

Anne Blenman Hare, the mother of a young man with autism, lives on the Peninsula. She can be reached at abh.hare@gmail.com.

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My Futile Search for an Adult Day Program for My Autistic Son

1/23/2015

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"Sadly, the day programs have not been kept current, and are out of touch with the behavioral and social challenges presented by autism."

"To get anywhere in this system... caregivers must have Mensa IQ’s, the sheer will of Samson, the luxury of time, and boundless tenacity."

"Every door that might lead to enrichment, meaning and security is locked, bolted and reinforced so that we as parents/caregivers are forced to attempt to plead our case and 'prove' how (very obviously) incapacitated our special needs loved ones are."

by Joanne Wickersham

I'm the mother of a 21 year-old man with autism who is soon transitioning out of his post-secondary program. Last year, I visited more then 15 different adult day programs in Santa Clara County through the Santa Clara County Office of Education.

The vast majority of day programs I found depressing and archaic both in terms of philosophy and implementation. All speak of "opportunities" such as life skills, "vocational/community service," physical fitness/recreational and the like, but were in fact more institutional, generic, One Flew Over the Cuckoo's Nest-style, reminiscent of containment and macaroni art.

While all appeared to be well staffed, most staff looked bored and uninterested and seldom engaged with their charges. Only one of the 15 programs appeared thoughtfully prepared, challenging and individualized. But that program is full, and we are on a waiting list. We did not see all programs in the county, and I'm told ones of reasonably good quality are full.

I came away with abject depression at the pure futility of all the time and money and manpower the school districts directed towards my son's academics, IEP enforcement, various therapies like ABA, speech, occupational therapy, vocational and the like. Apparently, after age 21, the best I could hope for was 5 hours a day, 5 days a week of merely keeping my son contained and safe.

While that is important, I want his life and future to be "Person Centered" and currently what is available in Santa Clara County just isn't—it’s warehousing.

Furthermore, supported living assessment and training are so impacted with clients and waiting lists that who knows how and when and where anyone will receive attention. I am told that there is only ONE provider for Tailored Day Services, which is shocking. As of now, our only choice is a warehouse where my son is essentially babysat and without any legally mandated person-centered planning.

I do hope the new Self Determination law will allow clients and caregivers to carve out a meaningful life with "choices" that truly serve the clients.

I know funding is short, but while most school districts have really tried to keep up with cutting-edge programs, therapies and interventions, sadly, the day programs have not been kept current, and are out of touch with the behavioral and social challenges presented by autism.

And housing options for this new wave of young adults with autism like my son are of course nonexistent. There are no rental vouchers available to people like him, even though he is severely disabled. The ones who need help most are the ones with the softest voice.

To get anywhere in this system, with the fragmented web of IHSS, Regional Center, Medi-cal, SSI, and housing authorities, caregivers must have Mensa IQ’s, the sheer will of Samson, the luxury of time, and boundless tenacity. Every door that might lead to enrichment, meaning and security is locked, bolted and reinforced so that we as parents/caregivers are forced to attempt to plead our case and "prove" how (very obviously) incapacitated our special needs loved ones are.

Joanne Wickersham is the mother of a 21 year-old son with autism, and lives in San Jose.

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TASK FORCE REPORT: RCEB Works Collaboratively with Community Partners to Examine Day Program Capacity

1/20/2015

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Findings show impact of systemic challenges.

A Day Program Capacity Task Force Report was issued in December 2014 looking into the capacity of adult day programs within Contra Costa and Alameda Counties. Some of the Report findings include:

• A very high percentage of day programs reported they are full or very close to full. The longest waitlists seemed to be associated with program specialization and level of community engagement.

• A need for increased capacity for “high functioning” individuals who are capable academically and vocationally but need support with social skills and/or have mental health needs.

• A need for more individualized, flexible programs.

• Some individuals/families are still unprepared to identify and transition to an adult day program. For example, some individuals/families don’t begin to explore programs until the last minute, some individuals/families are unclear on the range of service options, some individuals/families are surprised when programs are full, etc.

• Insufficient capacity for non-ambulatory individuals.

• Non-English speaking individuals and families are currently receiving fewer services on average than English speaking individuals and families.

• Program development and transportation needs are not keeping pace with client population growth in most areas.

The Report recommendations included:

• Start-up funding to create new programs, including programs to address increasing numbers of autism cases.

• A regular needs assessment to determine day program capacity and identify resource development needs. It is important to quantify how many adults are without programs and why.

• Regional Center should provide training for case managers to ensure that they are up- to-date with their knowledge of day service options. Case managers should be encouraged to share the full range of options with individuals/families, especially during transition years. Some individuals may consider college or employment instead of a traditional day program, if they are given the opportunity to make an informed choice. Some trainings for case managers can be provided by existing community partners, with little or no cost to RCEB.

• Regional Center should explore the creation of additional day service options for “high functioning” populations, especially those who need support with social skills.

• Regional Center and community partners (e.g. DD Councils and Area Board) should begin preparing service providers and the local community for federal push toward integrated services (e.g. by hosting public information meetings).

• Improved coordination with school districts to more effectively prepare students for the transition to adult services.

• Regional Center should target underserved populations with future resource development (e.g. non-English speakers).

• Increased capacity for non-ambulatory individuals in local programs

The report emphasizes the systemic nature of these problems: “[C]ommunity-wide engagement is necessary, if we are to ensure that quality day services are available for all people with developmental disabilities in the future.” As the Task Force that developed this Report continues its work we will offer more information on this Blog. 

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The Statewide Adult Autism Needs Assessment

1/6/2015

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Autism cases in California have spiked dramatically since the early 1980s. California's Department of Developmental Services had about 3,000 autism cases in the early 1980s, but today counts 73,000. This number only reflects those deemed eligible for Regional Center services and excluded many tens of thousands who are disabled by autism but considered insufficiently incapacitated to warrant eligibility.

Approximately 5,000 new autism cases enter the DDS system each year. Though once a rare disorder, autism cases now represent about 70% of Regional Center intakes.

Our Developmental Services system was not designed to serve such a large population of adults with autism, mainly because so few adults with autism existed in the state until fairly recently. Day programs, housing solutions, and case management were designed for intellectual disability, Down's syndrome and CP primarily. The system has not caught up with the breathtaking reality of the autism explosion and has failed to do any comprehensive needs assessment for this ever-growing population.

The California Adult Autism Needs Assessment will help address this urgent need for long-term planning so government and private entities can collaborate to provide lifespan care for this dependent and often difficult-to-serve population.

A Needs Assessment would have at least four sections:

1. Overview of DDS autism population, segmented by birth year cohorts and general level of support needs (from minimal support to maximum support).

2. Overview of non-DDS autism population, estimated based on Department of Education records.

3. An assessment of average annual costs to support DDS autism adults, via Purchase of Service through Regional Center, IHSS, medical, affordable or subsidized housing. Average costs based on functional level of the adult, and based on living in family home with parents or living outside family home in a licensed facility or with supported living.

4. A projection of Adult Autism Services needs from 2015-2025, based on population characteristics and average costs per case.

Autism Society San Francisco Bay Area looks forward to collaborating with entities throughout the state to promote the Needs Assessment, and we will keep you apprised of our progress.

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Autism needs institutions (but no, not capital-I Institutions)

1/6/2015

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Agnews Hospital

Only a few decades ago it was routine for states, including California, to essentially incarcerate children and adults with developmental disabilities in state-run institutions, many of which were horrific dens of abuse, neglect, and systematic deprivation of civil rights.

So it's no wonder most people today recoil from the idea of placing our grown autistic children in such places. And that much of current policy is aimed at "de-institutionalization," including new Medicare regulations.

But given the autism explosion — the skyrocketing numbers of young adults unable to care for themselves, and often exhibiting challenging behaviors — what we need today are in fact, more and more and more institutions.

How dare I say such a thing? Am I cruel, evil, heartless and nuts? No, here's the rub: the word "institution" has multiple meanings, encompassing both the asylums of the past, where we shunted disabled people to keep them out of sight and out of mind, as well as the nonprofit stalwarts of today, which provide ongoing support and programs for people who need it most.

In its more beneficent guise, an institution is the latter, an "organization founded for a social purpose," including serving people with special needs. Here are some examples of Bay Area "institutions" serving adults with autism and other developmental disabilities:
—Pacific Autism Center for Education
—Hope Services
—Morgan Autism Center
—Cedars of Marin
—Arc of San Francisco
—Abilities United
—PARCA

These are all vital and cherished organizations providing core and necessary social services, including day programs, employment, residential support, and housing. But when we closed the capital-I "Institutions," we seemed to forget that we needed to develop small-i "institutions" to replace them. California's budget has not expanded to provide reasonable rates to allow established nonprofits to grow, or new ones to take root. These organizations run at constant deficit, in some cases losing tens of thousands of dollars per year per client.

With thousands of dependent autistic young adults aging out of the school system and into an underfunded, overburdened adult system each year, we need to let hundreds of stable, mission-driven, autism-serving "institutions" bloom in California. These "institutions" need to be steeped in autism programming, provide strong supervision and training, be expert in abuse prevention, and provide in loco parentis services with caring, warm hearts. Without funds, how can such institutions proliferate, as they must? Let's support the establishment of more stable, high-quality, lifespan-serving autism "institutions," aware of the profound difference between Institutions and institutions.

—Jill Escher

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SFASA President Appointed to Autism Speaks Community Advisory Board for Science

1/5/2015

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Dear Bay Area Autism Families,

I recently had the honor of being appointed to the first Autism Speaks Community Advisory Board (CAB), which serves in an advisory role on science-related matters to the Board of Directors, Science Committee of the Board, the Autism Speaks President, the Science Leadership Team, and other relevant Autism Speaks science bodies such as the Science AdvisoryBoard and grant review groups. The CAB members are expected to be highly informed on autism science while being widely networked to the wider community. We are meant to bring the voice and urgency of families and individuals impacted by autism so that Autism Speaks science makes a substantive impact on families.

I look forward to helping Autism Speaks leadership evaluate future science work and priorities. To represent the interests and needs of the autism community, I invite all autism community members to contact me any time to share ideas and concerns. Topics could include, for example:

• Research into causation
• Epidemiology; autism rates
• Research into medical treatment, therapies, and intervention
• Assistive technology
• Science communications
• Anything else of concern as it relates to Autism Speaks science efforts

Please feel free to email me any time at jill.escher@gmail.com. Thanks so much!

Jill Escher
President, Autism Society San Francisco Bay Area
Founder, Escher Fund for Autism, GermlineExposures.org

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Intentionally Autism-Friendly Housing Solutions Are a Must

1/5/2015

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Our December letter to the California Department of Health Care Services emphasized that Medicaid dollars in California should support a wide variety of supported housing solutions, not just scattered-site generic housing:

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
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.

These cases of more severe forms of autism often involve substantial functional deficits marked by complex behavioral, cognitive, communication and sensory challenges. A portion of this wave of dependent adults cannot be served in generic, lightly supported, isolated housing, and have limited capacity for self-directed involvement in the community without maximum support.

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,

Jill Escher
President

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California DDS Hits 75,000 Autism Cases; Now Approaching 5,000 DDS-Eligible Autism Births per Year

Behaviors make the transition to adult living even more challenging

My Futile Search for an Adult Day Program for My Autistic Son

TASK FORCE REPORT: RCEB Works Collaboratively with Community Partners to Examine Day Program Capacity

The Statewide Adult Autism Needs Assessment

Autism needs institutions (but no, not capital-I Institutions)

SFASA President Appointed to Autism Speaks Community Advisory Board for Science

Intentionally Autism-Friendly Housing Solutions Are a Must

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