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.
TASK FORCE REPORT: RCEB Works Collaboratively with Community Partners to Examine Day Program Capacity
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.
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.
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
—Morgan Autism Center
—Cedars of Marin
—Arc of San Francisco
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.
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 firstname.lastname@example.org. Thanks so much!
President, Autism Society San Francisco Bay Area
Founder, Escher Fund for Autism, GermlineExposures.org
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
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,
by Diana Blank, LCSW
Parents of children with autism are under a considerable amount of stress, more than the average parent. The daily demands of caring for a child with significant needs, the ongoing case management, and the need to advocate for appropriate services can be taxing.
It takes a village to raise a special child. One piece of advice—don't go it alone and don't isolate yourself and your child. Isolation can lead to more stress and despair for parents. Plus, it is important that our children have plenty of opportunity for socialization and trying out new skills in "the real world."
Personally, I have found it is important for our family to have outlets in the special needs community and the typical, every day environment as well. For a while, I became overly focused on everything to do with autism—reading every article and Yahoo post about the latest treatment interventions, being consumed with what caused this condition for our son, spending countless hours advocating for every service or insurance reimbursement, preparing for IEP meetings and attending many autism workshops and community events.
I became overwhelmed, and in the process I was neglecting my own needs, my typically developing daughter's needs for her own activities and life outside of the special needs community, and nurturing my marriage. Now, having a considerable amount of babysitting assistance most days of the week, reinvesting in my career, attending to my own needs for self-care and getting back into the "real world" with my daughter, husband and son with autism have normalized our lives again and mitigated our stress levels.
It is still very important for me have regular time with my friends who share this autism journey but also to maintain my relationships with friends and family who don't have this challenge—we are able to relate about our life challenges which may be quite different.
If you are finding yourself consumed with worry or despair (what we generally refer to anxiety or depression in the clinical world) and it has become chronic (lasting over the course of a couple months or longer), be sure to seek out professional help. If you have a health insurance plan, you can call the mental health number on your insurance plan and look into your insurance benefits for professional counseling. It is often just a matter of being responsible for your co-pay while your insurance can pick up the rest of the cost. Get a list of mental health providers in your area.
While it may be ideal to find someone who has first hand experience with special needs or has worked with special needs families, this is difficult to find, unfortunately. If a therapist has a compassionate, non-judgmental approach and has significant experience working with overwhelmed parents, that can often be enough to find a clinician who could be a great fit. If you have Medi-Cal, it can be fully covered if you use a Medi-Cal contracted provider, often through a mental health non-profit agency in your area. Either type of plan can also cover psychiatry if one is possibly in need of medication support, to assist in alleviating symptoms of depression, anxiety, impulse control issues, insomnia, etc.
If one is having a difficult time functioning on a daily basis, interfering with getting adequate sleep, over-eating or loosing one's appetite, significant changes in concentration, mood, judgment are all good reasons to look at discussing the possibility of medication support with a psychiatrist, who specializes in psychiatric medication management. Of course, if you are having any thoughts of hurting yourself or someone else, be sure to seek immediate professional help.
Another common time when a special needs parent may experience a re- triggering of the grief process could be when a child with autism leaves home, to live in a group home, or assisted or supported living situation. Typical stages of coming to terms with any type of loss include denial, anger, bargaining, depression and acceptance. It is not necessarily a linear process and we may go back and forth between these stages of loss and grieving.
A major life event or stressor (ie: child moving out of the family home and having to accept that one's child requires this level of care) can send one back into the process of grieving. In an ongoing effort to keep working towards a more solidified sense of acceptance of our child and our role as a special needs parent, the ability to reach out and access the support we need in the community can be essential for most parents (ie: autism parenting support groups, personal therapy, regularly scheduled respite, etc).
Here are some helpful, local community resources, with a lengthier list at the Autism Society San Francisco Bay Area Support Group page: http://www.sfautismsociety.org/support-groups.html
Stanford Autism Parent Support Group http://childpsychiatry.stanford.edu/Parent%20Support%20Group.html
Parents Helping Parents www.php.com
Support for Families with Disabilities www.supportforfamilies.org
Counseling and other mental health support agencies www.pyramidalternatives.org www.star-vista.org
Yahoogroups (more listed at http://www.sfautismsociety.org/support-groups.html):
Autism Intervention Bay Area https://groups.yahoo.com/neo/groups/AutismInterventionBayArea/info
Peninsula Parents of Special Needs Kids https://groups.yahoo.com/neo/groups/PPSNK/info
Diana Blank is the Single Parents Coordinator and a special needs workshop facilitator at Jewish Family and Children Services as well as a Clinical Supervisor at Pyramid Alternatives. She is also the mother of two wonderful children, one of whom has autism.
From Autism Society of America:
The U.S. Senate has passed the Achieving a Better Life Experience Act (ABLE) -- a victory for grassroots advocacy for parents and people with disabilities. The Autism Society has worked with many partners in the disability community and with you, our members, to get this bill passed.
The ABLE Act allows for savings accounts for individuals with disabilities for certain expenses, like education, housing, and transportation, without jeopardizing certain important federal benefits such as SSI and Medicaid. The funds saved in these accounts, if managed correctly, can be another tool in planning for the lifetime support needs of an individual with disabilities. Up to $14,000 a year can be put in an ABLE account, with a cap of $100,000.
The bill must now be signed by the President to become law. Once the law is implemented in each state, the ABLE Act will allow the following:
1. Enable people with disabilities or family members to put up to $14,000 per year in the account, up to $100,000 total amount.
2. ABLE accounts could generally be rolled over only into another ABLE account for the same individual or into an ABLE account for a sibling who is also an eligible individual.
3. The funds must be spent on qualified expenses related to the individual's disability, such as health, education, housing, transportation, training, assistive technology, personal support, and related services and expenses.
Sadly, the man who conceived and worked tirelessly to pass the legislation, Steve Beck of Burke, Virginia, died suddenly last week. Steve was 44 years old and the parent of two daughters, including Natalie who had a disability. Steve, along with a group of parents around his kitchen table, conceived the idea of a savings account for his daughter, similar to the 529 account used for college savings. The passage of this Act is a wonderful tribute to the memory of Steve Beck.
As the process to open accounts for our family members with autism develops, we will keep our members informed as to next steps. See autism-society.org for more information.
Autism Society San Francisco Bay Area was delighted to help out at a recent pilot of an autism-friendly Nutcracker, at the dress rehearsal of Ballet San Jose's sumptuous and beautiful production, December 12, in cooperation with Autism Fun Bay Area, a nonprofit that sponsors performances where "all behaviors are welcome."
Through this pilot effort we hope to spawn a new holiday tradition where special needs families can engage in a cultural tradition without worrying about their kids' jumpiness, noises, or sensory issues. The families loved this experience, the kids and young adults were thrilled with the music and spectacle, and we can't wait to help bring this special event to a broader audience in 2015! Many thanks to Ballet San Jose and Autism Fun Bay Area for making this happen.
Autism Society San Francisco Bay Area is run by a volunteer board of directors, comprised of great folks from around the Bay Area. If you may be interested in joining the board, and want to learn more, please email president Jill Escher at email@example.com. Candidates must:
• Share our passion to improve community understanding of the autism explosion in our region, and the implications therefor
• Share our urgency about the dire need to expand options for adult services, programs, and housing in our region
• Share our passion for educating and networking the autism community in the Bay Area
• Be a strong team player, with a positive attitude
• Have strong organizational and/or advocacy skills
We have five board meetings per year, usually in Palo Alto, plus committee and regional meetings as may be needed. Board members are expected to volunteer at events and behind the scenes, engaging in strategic planning, planning meeting and events, developing our communications, writing letters, and meeting with community leaders.
If you are interested in learning more, please email us per above. Thank you!