Letter: California must allow for a full range of housing options for the surging population of adults with autism
Autism Society San Francisco Bay Area
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
October 6, 2014
Re: Public Comment for October 8, 2014 Developmental Services Community Task Force Meeting—Creating a Shared Understanding of the Enormity of the Autism Explosion in California, and the Sweeping Social Service Demands
Dear Honorable Secretary Dooley and Members of the Community Task Force:
We wish again to express our gratitude for your efforts to plan for community-based services to serve the more than quarter-million Californians with developmental disabilities.
Among other things, the task force is charged with examining services for the developmentally disabled in the community “in the context of a growing population.” We feel it important at this time that all stakeholders understand this phrase represents a considerable understatement, as it implies gradual and moderate increase. Instead, we have an almost-logarithmically and continually exploding population, primarily due to autism cases, that began in the early 1980s and continues unabated today.
For that reason—and to help create a foundational, shared understanding of the history and scope of this unprecedented, urgent problem entailing vastly larger social services, we provide the attached backgrounder, “72,000-and-Growing: California’s Autism Epidemic.” (Also available at sfautismsociety.org.)
Thank you for your consideration of our comments. We look forward to working with the Task Force to find innovative, robust, community-based solutions over the months and years ahead, and thank you again for your efforts.
Very truly yours,
Jill Escher President
Autism Society San Francisco Bay Area Public Comment on Goals of New Task Force on Community-Based Developmental Services
[Editor's note: In a quiet, yet potentially important, move, California's Secretary of Health and Human Services Diana Dooley has convened a task force regarding the future of community-based services and supports for the growing population of Californians with developmental disabilities. We are enthusiastic about the possibilities ahead and have submitted this letter.]
Autism Society San Francisco Bay Area
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
July 22, 2014
Re: Public Comment on Goals of New Task Force on Community-Based Developmental Services
Dear Honorable Secretary Dooley:
Autism Society San Francisco Bay Area advocates on behalf of thousands of families affected by autism within our region. We are grateful to you and the Task Force for your nascent efforts to plan for the future of the rapidly growing population of California’s adults with developmental disabilities, the vast majority of whom have never resided in institutions, and an escalating percentage of whom have autism.
Today DDS counts more than 70,000 individuals substantially disabled by autism, up from fewer than 5,000 only 25 years ago. To cite an example at a local level, Santa Clara County had 147 RC-eligible autistic individuals in 1990. Now it counts 3,007.
As we wrote in November, housing and caring for such a vast and unprecedented population of people incapable of caring for themselves, and often exhibiting complex behavioral, cognitive, communication and sensory challenges, will require new and customized community-based care programs and housing facilities.
We believe that planning ahead is necessary to ensure that the arrival of this large autism demographic will not overwhelm the existing care system, leading to mass numbers of dependent young adults without viable options for care or housing.
As the Task Force contemplates the path ahead, we would like to suggest three areas of reform for the group’s consideration:
(1) Promote the expansion of adult day programming options.
Day programs appropriate to meet the complex needs of the burgeoning population of young adults with autism are needed. Of particular concern are the increasing numbers of individuals who present significant behavior challenges, requiring more intensive staffing to keep them and others safe while allowing them to be productive.
The availability of appropriate day programs is a key element of addressing the statewide autism crisis, as success with these programs, particularly nonprofits that create a strong sense of community and provide a reliable support network for families, often alleviates pressure on other care areas.
Potential solutions to consider for creating more capacity in day programs:
• Offer adequate vendor rates adjusted to geographic realities.
• Offer specialized training and behavioral support to access community activities for the more challenging clients, using best practices such as those existing in the school system, facilitating community activities and meaningful engagement without seclusion or isolation.
• To provide suitable space for new programs, create long-term state lease commitments for DD-serving programs, subsidize new facilities, or at allow for priority lease or purchase of publicly owned properties for DD-serving programs.
• Offer loan programs and property tax waivers to foster creation of new centers.
• Expand creative employment options for those able to work, including below-minimum-wage jobs for those with limited skills.
• Expand employment programs available through the Department of Rehabilitation, allowing for work options for people with significant cognitive and behavior challenges.
(2) Promote options for community-based housing emphasizing public-private partnership.
We agree with a growing number of organizations that the time has come for the creation of a Community Development Plan for California’s adults with DD. In the current reality, particularly in expensive real estate markets such as ours, almost no viable options exist for adults with autism unless they come from wealthy families or have the right profile for one of the very few group home spots available. We face shrinking housing options amid skyrocketing demand.
To address the needs of adults with autism of all income levels and dimensions of functioning, nonprofits and general property investors must be empowered to create new housing solutions for ASD and DD adults, including collaborative homes, group homes, multifamily projects, and clustered communities. Public-private partnerships can help solve our housing dilemma.
Viable projects will require rental income, which is only possible with rental vouchers, given that this population by and large cannot earn income. They will also depend on reduction of costs, which can come in the form of property tax waivers, reduced mortgage costs, reduced utility costs, and costs for behavior-related repair and maintenance through a DDS fund.
The centerpiece of a new system should be meaningful choice. For many with autism, integration in a mainstream, integrated environment is not always possible due to challenging behaviors, social incapacity, sensory disorders, space needs, and safety and supervision considerations.
Potential solutions to consider for supported housing:
• Housing vouchers for RC clients through HUD 811, promoting a wide array in choice of appropriate housing type and location.
• Property tax waivers for all forms of autism/DD housing.
• Priority use of public lands or income from former DDS property to house RC clients.
• Allowing RCs to use Purchase of Service funds to seed new housing projects.
• Enhanced behavioral and aide supports for adults with substantial behaviors residing at home or shared settings.
(3) Reform community care regulations.
Creating community-based solutions for adults with autism is not just a matter of funding, it is also a matter of breaking new ground in programming types. We inherited today’s CCL regulations from an old era before the autism explosion, resulting in a mismatch between the old system and the nature of the intensive needs of tens of thousands of young adults with autism.
Potential solutions to consider for licensing:
• Convene an expert committee to revamp CCL and DSS regulations to reflect actual needs of adults with substantial autism.
• Authorize a wide variety of housing solutions with greater flexibility in operation. Many adults with ASD require highly structured and individualized programming when at home during the day, requiring a higher level of staff training and supervision, and substantial physical space.
• Cut unnecessary red tape to facilitate proliferation of parent-created group homes.
Finally, we would like to suggest that given the new scope of work before the Task Force that the chair consider adjusting the committee to emphasize individuals with experience in the field of community-based supports, programs and housing.
Again, we thank you for convening this Task Force to address such an urgent social need, and thank you for your consideration of our comments. We look forward to working with the Task Force in the months ahead, and can be reached at email@example.com.
Very truly yours,
This is the first installment of a new multi-author series, "The Impossible Adulthood," probing the lack of options for the skyrocketing population of dependent young adults with autism. As Susan says, "Why are we not focusing on creating opportunities for this age group – especially in light of the tidal wave of individuals now coming through the system?"
by Susan Houghton
The yellow school bus made its last stop at my house today. Forever.
With graduation ceremonies just ending, this milestone is typically a reason to celebrate. After all, most young people are heading off to college or to other programs or starting new jobs with hopes and dreams for the years ahead.
But for my son Robby and our family, it’s just the opposite.
Robby is one of 70,000 individuals in California diagnosed with autism –an alarming statistic from the California Department of Developmental Services (DDS).
The yellow school bus has been Robby’s lifeline to opportunity since the age of 4 – taking him to a world of caring teachers, academics, social interactions, job training and activities. But Rob celebrated his 22nd birthday this past spring. And for all special education students, that’s when public school access officially ends and their life becomes completely different. He was allowed to stay in school after his 18th birthday to learn job and life skills and to prepare him for the ‘real world.’ Rob thrived in this transition class.
But now there is no place for him to go.
I started our search for Robby’s next phase and essentially his life journey, more than a year ago. Feeling optimistic and confident about all he had learned while in school, I tried to enroll him in one of the most innovative programs for young adults with special needs. It was a special college program that ‘catered’ to individuals with autism and other developmental delays. Acceptance would mean a chance to live in a dorm, follow a routine, and learn life skills and more academics.
But due to the huge increase in individuals diagnosed with autism (1 in 68 nationwide - according to Autism Speaks), competition for these programs is now extremely fierce. Colleges can now be more selective in who they accept. And with higher functioning individuals applying, those with moderate disabilities and cognitive issues—like Robby—are often left behind.
But we did not give up. We tried two highly regarded local programs in the East Bay – only to find they both had two-year waiting lists.
And sadly, the only programs with actual ‘openings’ did not seem at all appropriate. Robby is capable of so much more than sitting all day watching television or doing puzzles. So now here we are…after 18 years in the public school system with structured days and opportunities, Robby, like thousands of other people with special needs, is being left behind.
I never really thought this would happen to us. In my mind, my son was going to be one of the success stories! After all, he had wonderful teachers and aides and loved everything associated with school. Robby was the honorary high school band drum major, worked in the cafeteria, student store and local gym and even volunteered at Camp Parks. He recently gave a speech before a large audience to honor his beloved teachers and he excelled at number of Special Olympics sports.
But our experience appears to be the norm. Post-high school programs for young adults with special needs are not readily available. Yet, DDS has documented that more than 93 percent of Californians diagnosed with Autism are under the age of 31. Think about what waiting lists will be like in a few years when more individuals come of age.
Thanks to the Individuals with Disabilities Education Act (IDEA), children with special needs are guaranteed a free and appropriate education up to the age of 22. IDEA also mandates students be trained for further education, employment and independent living. I believe that public school districts for the most part, do a good job of providing this. But what’s the point if there aren’t opportunities to use those skills? Why can’t there be a “life after high school” for all who want it? Why are we not focusing on creating opportunities for this age group – especially in light of the tidal wave of individuals now coming through the system?
A few years ago, I read a tragic story about a Bay Area mother who killed her 22-year old son with autism and then committed suicide. Neighbors and friends said she had struggled to find a program willing to take her nonverbal son, who had intense behaviors and the need for 1:1 supervision. Obviously this was a terrible and extreme reaction – but her frustration at finding a program was real. They don’t exist. And when you do find one, you’re faced with long waiting lists and stiff competition. I feel like I need a marketing campaign and dossier of why Robby deserves a chance to be accepted.
It is time for this to change. All stakeholders - parents, educators, legislators and community leaders need to start working together – and aggressively - to provide options. We need more work and day programs for young adults. We need housing opportunities and essentially more life choices. Programs should extend the premise found in IDEA to ensure life-long learning and social opportunities.
And we must act now – before those two year waiting lists become five years long.
I took a picture of Robby on the morning he boarded the yellow school bus for the last time. It was bittersweet for me. I am so grateful for all the aides and teachers who’ve encouraged Robby through out his school years to work hard and be his very best. Now, I just need to find a place where he can continue to do that.
Susan Houghton is the Board President for Sunflower Hill, a 501c3 nonprofit organization (www.sunflowerhill.org) working to change the paradigm of living options for individuals with special needs by creating a sustainable community similar to senior living. She lives in Livermore, California with her husband Larry and son Robby.
Susan Houghton (925) 321 5757
by Jill Escher, President, Autism Society San Francisco Bay Area
It’s autism awareness month, and you’re probably confused. Have the numbers really increased? Is it mostly due to better awareness? Hasn’t this brain disorder, with its notable social/communication/behavioral abnormality, always been around, and we just labeled it something else? Like geekiness or awkwardness?
Let me be clear where our media and government have failed: autism rates have, without any scintilla of doubt, exploded over the past 25 years. And as a consequence, we now have an unprecedented population of young adults incapable of caring for themselves and who will need often intensive lifespan care. And those numbers increase markedly every year.
In 1985, California, which has kept meticulous records of the developmentally disabled since the 1960s, counted just a few thousand citizens substantially disabled by autism. Today we have 70,000 — a staggering increase of more than 2,000% that nobody could have anticipated, and this number does not include the tens of thousands more moderately affected and not served by the state Department of Developmental Services, and it certainly does not include the merely socially awkward. In other words, for every one Californian rendered substantially disabled and dependent by autism in 1985, there are more than 20 today.
With ever-escalating numbers of dependent young adults, the time has come to reform our developmental disability housing and services system that was not designed to handle this many and with such intensive needs. Our current model, though well-intentioned, is beset by some significant bureaucratic hurdles, lingering paternalism and financial inefficiency, and had been based primarily on models serving milder disabilities.
Here are five things we can do today to begin to address the burgeoning adult housing and services needs:
-- Day Programs: Programs appropriate for adults with autism, particularly those with challenging behaviors and communication deficits, are bursting at the seams, with ever-growing waiting lists. Overwhelming costs, limited reimbursements and bureaucracy prevent programs from expanding and new programs from being created. Nonprofits are ready to invent the solutions if given a green light by stripping away red tape and providing reimbursement that cover the actual cost of care.
-- Housing: Our agencies provide few vouchers or other supports for autism housing. A comprehensive federal plan for autism housing across should be developed to include reasonable incentives, such as vouchers and tax breaks, to empower a broad menu of housing options. Given the surge in numbers of those severely disabled by autism, this should include “communities within our communities” that offer much-needed amenities such as protected open space, swimming pools, swings, and other therapeutic equipment, safety monitoring and fencing.
-- Transparency: Our developmental disability system now finds itself mired in an old paradigm where the government agencies paternalistically withhold information about community housing and services, giving parents and families little access. We need a transformation into the 21st century with online portals giving all families full information about the options in their communities.
-- Employment: Many people with higher-functioning autism are capable of supported employment if given the opportunity. The state should incentivize all employers to hire people with autism, in collaboration with nonprofits that can provide training and ongoing support and supervision. This must include making it legal to hire substantially cognitively disabled workers for lower than minimum wage.
-- What happens when we die? Our biggest challenge as a state will be finding ways to ensure the daily wellbeing of dependent and vulnerable adults with autism after parents have passed away or are no longer capable of providing care. We need to allow parents to create long-term proxy parents through innovative, new nonprofits. As most autism families cannot afford yet another bill relating to their children’s disabilities, seed-funding these vital nonprofits will require public support.
Today we face an astonishing range of challenges: the persistent mystery over what is causing abnormal brain development in a large portion of an entire generation; the lack of any effective treatments for the devastating condition; a shoulder-shrugging federal government that has yet to meaningfully address the autism crisis; the often massive emotional, financial, and physical toll on parents and families; and the lack of housing, programs and supervision to the ever-growing wait list of dependent young adults who cannot care for themselves and often have intense learning and behavioral challenges.
The adult autism crisis is here. The needs are intense and must be addressed, for many decades to come. This time has come for federal and state policy to unwaveringly empower the market, nonprofits and parents to invent a better future.
[From an op-ed written for the Community Newspapers in Silicon Valley]
by Jill Escher
When Scott Badesch, president of the Autism Society of America, visited San Jose last week, he addressed a crowd of concerned autism parents gathered at the Morgan Autism Center in the Rose Garden area.
The first wave of children of the autism epidemic has started to age out of the school system, Badesch said, and is entering an antiquated and fragmented adult housing and care system wholly unprepared to handle the vast numbers of affected individuals and their often complex and intensive needs.
Autism service providers here in the Bay Area are already feeling the heat.
Morgan Autism Center’s adult program, housed in two former classrooms at the Benjamin Cory Elementary School site, is “bursting at the seams,” says Executive Director Brad Boardman. Demand for adult autism program options is soaring, he added, but scant are the facilities or staff to serve them. Autism adult programs across the Bay Area are beset by waiting lists, short-staffed, and running out of space.
In the 1980s, when California made the decision to begin shuttering Developmental Centers –- including the Agnews Developmental Center in Santa Clara –- that had housed the developmentally disabled when institutionalization was the societal norm, no one could possibly have foreseen the coming explosion in cases of autism.
From the Department of Developmental Services, which has kept careful records regarding residents with developmental disabilities, we see that rates of substantially disabling autism alone, not including milder forms of the disorder, have soared more than 2,000 percent since the 1980s. That means that for every one Californian with substantial autism in 1985 (when autism by any name was largely unheard of), we have more than 20 today.
Compounding the problem, in California the adult autism services system is funded at one-quarter the rate of the educational system, but when a 21 year-old autistic person turns 22, and is no longer eligible for special education, the needs for space and staffing hardly diminish by 75 percent.
“Of course, no one wants to return to institutionalizing dependent adults,” Boardman says, “but we must provide as an alternative a menu of strong community-based alternatives, and we’re systematically failing to do that.”
Autism is a developmental disability that affects the neurodevelopmental functioning of the individual, resulting in significant impairments in language, social interaction and behaviors. It is considered a spectrum disorder with the nature and degree of disability varying from person to person. Some, like my children, are nonverbal and will require lifelong 24/7 care and supervision. Others have little cognitive impairment but substantial challenges with social functioning and abstract thought, for example.
In cooperation with organizations around the Bay Area, the Autism Society of the San Francisco Bay Area is leading a collaborative effort to provide tangible, viable answers to the adult autism crisis. We need innovative forms of autism-friendly supported housing in every community in the Bay Area, requiring rental vouchers for those with exceptional needs, reinvention of group homes to include autism-friendly amenities, and new all-abilities housing complexes that deliberately include people substantially challenged by autism as valued participants in our community.
But housing is just a start. We will need dozens of new day programs where adults with autism can find community, meaningful work and daily activities. But in the Bay Area, this requires real estate and staff, both of which are financially out of reach for even the best intended and most efficient of programs.
With autism rates now reaching 1 in 88, or according to the latest Center for Disease Control statistics, 1 in 50 in school-age children, autism is affecting us all. We invite you to learn more about our Autism and Developmental Disabilities: Adult Housing and Lifespan Care Solutions Initiative at www.sfautismsociety.org. For more information about Morgan Autism Center, visit www.morgancenter.org.
Jill Escher, a San Jose resident, is president of the Autism Society of the San Francisco Bay Area, the mother of two children with autism, and a noted autism causation science and programs philanthropist. She can be reached at firstname.lastname@example.org.