by Connie Boyar Frenzel

Autism families can use all the breaks we can get, and that includes opportunities to save money. Here are some ideas to help us keep our money in our piggy banks.

1.  DMV handicap placard. Many children and adults with autism qualify for DMV handicap placards due to disabling intellectual/functional disability, physical disability or both. These permits allow you and the permit-holder to park in metered spaces with no charge, or exceed time limits, or park in designated handicapped spots. They are also helpful for supported living or group home staff to use on behalf of their clients. The disabled person must be in the car to use this permit. To learn more, see https://www.dmv.ca.gov/portal/dmv/detail/vr/disabled

2.  National Parks. Allows people with permanent disabilities to have a free lifetime pass for our national parks and recreation areas. This includes Yosemite, Muir Woods, etc. To learn more, see https://store.usgs.gov/pass/access.html

3. California State Parks. A 50% discount for people with disabilities. See https://www.parks.ca.gov/pages/737/files/dpr818a.pdf

4. Save on taxes. IHSS providers who live with a disabled person may not have to pay taxes on their earnings. To learn more, see http://ihssadvocate.com/news/ihss-income-not-federally-taxable

5. Discounts on public transit. For example:
VTA: http://www.vta.org/getting-around/paratransit/regional-transit-connection-rtc-discount-cards-for-passengers-with-disabilities 
Clipper Card:  https://www.clippercard.com/ClipperWeb/discounts/rtc.do
Muni:  https://www.sfmta.com/getting-around/transit/fares-passes/free-muni/free-muni-people-disabilities
More info:
http://www.disabilityrightsca.org/advocacy/Clipper/QA.htm  Attendants can also get a discounted rate when accompanying a person with disabilities using mass transit

6. Tax-free savings. ABLE Accounts grow tax-free. California will be rolling this out hopefully in the early fall.  A possible alternative to, or addition to, a special needs trust. Google ABLE Account in California for the latest information.

7. Free or cheap events. Autism Fun Bay Area offers a year-round calendar of free or very inexpensive concerts, performances and hikes. See autismfunbayarea.org. A variety of other low-cost events are listed on the sfautismsociety.org/events site, including Special Needs Jump Sky High, and sensory friendly hours at The Tech and Children's Discovery Museum.

8. Energy savings. The PGE Energy Savings Assistance Program helps low-income households save energy and lower their bills.

9. AT&T Lifeline. Low-cost phone service for low-income households.

Have fun saving money! What other penny-pinching tips do you have?

Connie is the mother of a young man with autism and is a member of the Autism Society San Francisco Bay Area board of directors.

by Cristina Moretto

During a lunchtime run along the Bay Trail in Foster City, I came across a white van in one of the trailhead parking lots. The driver stepped out, opened the rear door as he lit a cigarette, and out came five severely developmentally disabled adults. I stopped running because I wanted to see what would happen next. What happened next was, well, nothing. The driver smoked his cigarette and the five passengers meandered aimlessly around the parking lot. I saw no engagement between the driver and his charges. While I can’t say what happened after I resumed my run, my sense was that wandering around the parking lot was a large part of the “outing.” 

Because my 20 year-old son Justin, who is severely affected by autism, has slightly less than two years left in the school system, I am in the process of finding him an appropriate adult day program. Due to the scarce number of viable options, my mind sometimes conjures a Dickensian nightmare of neglect, with attendees left to rock on the floor in dirty clothing, or at least something like what I glimpsed during my run: just-killing-time style babysitting.

While there are great programs for high-needs adults like Justin, they have waiting lists, sometimes many years long. It’s not that the other day programs are operated by bad people, but the current climate makes it extremely difficult, if not next to impossible, to provide sufficient staff and stimulating curriculum appropriate for the clients.

Day programs are subject to shrinking federal and state funding that fail to keep up with actual costs. Staff is generally paid little more than minimum wage for difficult, and what should be considered skilled, work. I made more money as an unskilled college student working in retail 25 years ago. As a result, it is very difficult to draw people who would be excellent candidates into working with this vulnerable and special population.  

If things don’t change, the situation will only get worse, with increasingly crowded conditions, lower staff ratios and substandard facilities. The direct result could resemble the Dickensian scene to which I alluded. Given the increase in autism cases aging out of school, It appears this image is not so terribly far-fetched. The Association of Regional Center Agencies did not call our system “On the Brink of Collapse” for nothing.

It is easy for us as autism parents to be complacent and assume “things always work out.” They don’t. Adult autism programs don’t just magically happen. We need to find more ways to fund essential human services like housing and programs for adults with severe developmental disabilities, instead of, for instance, forking out obscene amounts for a border wall. This means increasing awareness about the staggering numbers and the adult autism crisis; activism to reform old policies; or boots-on-the-ground actions to create more opportunities for these very needy young adults. As with any political or systemic change, it will require action from those willing to band together to make the difference.

By Irma Velasquez

Soon after my 60th birthday, I became more sensitive to the truth of my mortality. The question my father asked me days before he died kept echoing in my head: “What will happen to Aaron when you’re gone?”

My son Aaron is 23, nonverbal and autistic. When I am gone, he will need a home, a constant stream of supports, and a community that cares about him​ and for him​.

"Home and community" are hot topics in autism today, as federal policy threatens to sharply restrict congregate options where adults like my son can live and receive services. But for Aaron and many with severe disabilities like his, “community” is a many-layered thing, and just living in a solitary apartment with a caregiver for him is not community.

The first layer is personal space. For Aaron it starts with small and private spaces. He has claimed two rooms in our house, his bedroom and a room we call the library. His bedroom is the place he retreats to when he senses the onset of a seizure. It’s there where he cuddles under a blanket with his iPad or a book and where he finds a quiet place away from unfamiliar visitors. The library is a small room lined by bookshelves. Aaron has a mysterious connection ​with books​, one that only he understands.​ He signals his need for privacy by closing the door, sometimes leaving just a crack open, other times the door is firmly closed, depending on his mood. When he’s wants company, he gestures “come on in.” It’s his place. The place where he goes when he feels like listening to music, be with his books or just ​to ​be alone.

The next layer is the micro-community of family, friends and helpers that share Aaron’s life. During dinner parties Aaron circles the table several times, observing the guests as they pour red wine into their glasses or reach for another bowl of rice. He smiles and sometimes claps. When friends visit, he greets them with a clap and sometimes a hug. While Aaron loves his quiet spaces he also thrives ​around company and a ​likes a social whirl. He is part of a larger world with the energy and nourishment of social contact, and where he is accepted and can be himself. ​This layer of community is crucial: studies show that social and emotional support is a significant predictor of better cognitive function and a protector of functional decline as one ages. This is as true for Aaron as it is for the rest of us.

The third layer of community is the macro-community hubbub and activity of the world outside, with strangers and community institutions like schools, employers, parks, shopping centers, and the Y. I have always cherished engagement with community which brings to mind the time I lived in San Francisco in an apartment on Russian Hill with many attractions. It was a convenient distance to work, the health food store was visible from my cozy studio window and the smell of my favorite restaurants on North Beach and Chinatown was ever present. It was also a place where my friends, local and foreign, were eager to visit. El Salvador was home for me during the first ten years of my life. Our house was busy with daily visits from grandmothers, aunts, cousins and neighbors. They came to share the latest gossip, or to bring a basket of avocados picked from their back yard or just to sip a cool glass of agua fresca. In both places, I had community on all three levels.

A few years ago I met Larry Grotte, the father of a son with special needs, who asked me the “after you’re gone” question. I could no longer place the topic on the shelf hoping that the answer would jump out at me. Peter, Larry’s son, is non-verbal with a long list of disabilities. In the process of discussing a solution to our mutual quandary Larry and I began to design Rident Park, a home for our sons, where they would live and enjoy the warmth of all layers of community after we are no longer on this earth.

As we plan Rident Park, we intentionally take the multi-layered approach, because that is the human norm: private spaces and homes, opportunities for social engagement with a broader group of friends, supporters and caregivers in a safe enclave environment, and ample everyday access to the riches of the local community at large. For those with severe disabilities who lack ability to create their own micro-communities or interact on their own in the macro-community, intentionality of design and operation is imperative.

For adults like our son, there is no​ one​ simple answer or approach. As we plan for their individual needs, we hope all families ​will ask questions and seek answers that will meet all layers of community needs for their adult children. We must build communities​ that are structured to provide care, love, support, and health​y alternatives. All adults with disabilities deserve to live in community through their lifespan.


Irma Velasquez is a long-time member of the Autism Society San Francisco Bay Area board of directors, a mother, artist, writer, life coach, and entrepreneur. She and her husband Sherman Chan founded the school Wings Learning Center in 2001.

Thank you Jan Johnston-Tyler of Evolibri for her presentation at Autism Society San Francisco Bay Area's "Into the Future" conference held December 3, 2016 at Stanford. Her presentation addressed developing transition plans for non-regional center clients. You can also find the video here: https://www.youtube.com/watch?v=v4AS92_fvBI

Also, see the Postsecondary Transition Guide from OSERS which describes students' rights regarding transition planning:
https://www2.ed.gov/about/offices/list/osers/transition/products/postsecondary-transition-guide-2017.pdf?utm_content=&utm_medium=email&utm_name=&utm_source=govdelivery&utm_term=

Autism Society San Francisco Bay Area
PO Box 249
San Mateo, CA 94401
info@autismsociety.org
sfautismsociety.org

Centers for Medicare & Medicaid Services
Department of Health and Human Services
Attention: CMS-2404-NC
P.O. Box 8013
Baltimore, MD 21244-8013

January 9, 2017

Re: Response to CMS Request for Information on Home and Community-based Services

Dear CMS staff:

Thank you for this opportunity to provide input into home and community-based services. The availability of HCBS long-term care services for the burgeoning population of adults disabled by autism is one of the most pressing issues, if not the most pressing issue, facing our autism community and one of the greatest social services challenges of our time. Children with autism become adults with autism, and here in California the numbers of adults with severe forms of autism who would require institutionalization absent community-based alternatives is surging dramatically: state data show this population will fully quadruple in the next 20 years, reaching about 100,000 individuals (in contrast, there were only a few hundred such adults in the early 1980s).

This autism tsunami is unprecedented and potentially catastrophic as parents of the autism boom age, grow infirm, and die. Our children are often individuals who cannot care for themselves and will be perpetually dependent on care provided by others, owing to severe deficits of functioning, cognition and behavior. The autism community needs a federal funding stream that is responsive to this dire reality and flexible enough to address a wide range of needs, while also retaining as much efficiency and leveraging of other resources as possible.

With that unprecedented reality in mind, here are our responses to CMS’ questions:

A: What are the additional reforms that CMS can take to accelerate the progress of access to HCBS and achieve an appropriate balance of HCBS and institutional services in the Medicaid long-term services and supports (LTSS) system to meet the needs and preferences of beneficiaries?

Value person-centered diversity of options. The needs of adults with autism are extremely diverse and range from full institutionalization to independent living in generic residences with occasional coaching. Medicaid-fundable options should include the full array of services in the settings as driven by the beneficiaries’ particular choices and circumstances, including congregate and disability-specific settings. Policies that favor generic “any old apartment” solutions plainly penalize those with more significant disabilities and support needs.

End arbitrary limitations that drive up costs and drive away options. Here in the Bay Area living costs, real estate costs and personnel costs are extremely high. We desperately need Medicaid funding that that is supportive of the reality that exceedingly few housing and program options are available to adults with autism. We must smash barriers to access, not erect new ones. Arbitrary limitations on settings are discriminatory, squelch the development of new options, and can compromise the health, safety and happiness of adults with developmental disabilities. Individual choices, clinical needs, and residential realities must be paramount

End any “settings” requirement as applied to private properties. Under law, Medicaid must presume private settings to be compliant with regulations. Neither CMS nor the states possess any no legal authority to review and de facto license private residences for compliance with any laws. To the extent a person-centered plan is not being effectuated, that review takes place at the level of the individual PCP and not at the level of the property itself (over which CMS has no jurisdiction).

CMS must adhere to the actual language of Olmstead. Militant advocates have distorted the plain language of Olmstead in a way that threatens significant harm to many of our most disabled citizens. Many adults with autism have lifelong needs that require high levels of care and autism-specific programming, set-up and design—nothing in Olmstead restricts access to these options. Many adults with autism are plainly incapable of engaging in competitive employment and will continue to rely on sheltered workshops and facility-based day programs. It is dangerous, reckless, immoral, and illegal under the ADA to eliminate important options, including ICFs/IID, sheltered workshops and facility-based day programs – that many of our most disabled individuals rely on and prefer. From Olmstead: “We emphasize that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings . . . . Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it." Olmstead v. L.C., 527 U.S. 581, 601-602 (1999).

Heightened scrutiny must be eliminated.  Heightened scrutiny is an unlawful mechanism and example of government overreach whereby CMS retains unbridled closed-door administrative discretion to disapprove services delivered in a setting deemed too congregate or disability-serving. This process does not comport with basics of due process, was not subject to proper vetting under applicable federal administrative procedures, and only serves to discourage important and viable options for adults with autism. Instead of heightened scrutiny of settings (over which CMS has no jurisdiction anyway), CMS should emphasize the important idea that each Medicaid funded plan contain the appropriate person-centered elements and that no adult with autism or I/DD should be forced to reside, work, or receive services in a congregate or disability-specific setting unless the individual prefers that setting.

B: What actions can CMS take, independently or in partnership with states and stakeholders, to ensure quality of HCBS including beneficiary health and safety?

The person-centered plan is the ideal way to ensure beneficiary health and safety.  Every plan should include the list of safeguards to ensure the beneficiary does not become the subject of physical, sexual, financial, emotional, or nutritional abuse or neglect, is receiving proper medical care, and has multiple layers of supervision on “eyes” on him or her at all times.

Those too cognitively impaired to report abuse should have the option of an Abuse Prevention Plan, or APP, listing, among other elements, the following measures:

• The identities of the staff supervisors ultimately responsible for ensuring safety on a day to day basis

• Training program for all staff working with the beneficiary

• Methods for staff to cope with severe behaviors and aggression of adult autistic beneficiaries

• Technology, including cameras and recorders, to track the 24/7 activities of the beneficiary

• Day to day activities to ensure the beneficiary is not social isolated and has access to plentiful enriching activities either with others with disabilities or in the general community, as may be desired and appropriate

• Daily nutrition logs to prevent nutritional neglect

• The APP should also put in place measures to prevent financial neglect, theft, and other non-physical harms

• For severely impaired females, Rape and Abuse Prevention Plans (RAPP) must be created to protect the most vulnerable members of our society from molestation, rape and pregnancy

C: What program integrity safeguards should states have in place to ensure beneficiary safety and reduce fraud, waste, and abuse in HCBS?

Here in Northern California we have not witnessed fraud and waste in HCBS programs serving adults with autism. To the contrary, the vast majority of our adult autism-serving nonprofits are operating on a shoestring, doing heroic work providing essential life services to some of the most difficult to serve members of our society, running a deficit. They are unable to attract new workers or expand their services (in spite of swelling demand) due to the abysmal reimbursement rates.

D: What are specific steps CMS could take to strengthen the HCBS home care workforce, including establishing requirements, standards or procedures to ensure rates paid to home care providers are sufficient to attract enough providers to meet service needs of beneficiaries and that wages supported by those rates are sufficient to attract enough qualified home care workers.

This is probably the single most important issue we are facing—the dismal pay rates for direct service providers. We regularly hear from our families and professionals of the impossibility of finding staff for day programs or home programs, the high turnover, the lack of funding for training, and the nonexistence of funds to pay staff for overtime. Minimum wage is insufficient to attract qualified staff given the high stress, isolation, and physical dangers of many of these jobs. Applicants would rather work at Starbucks or in janitorial or in the restaurant sectors.

CMS needs to be region-sensitive. The SF Bay Area is exceptionally expensive yet we have as many autistic adults as any other area. CMS rates need to be competitive with other professional caregivers in our area.

Thank you for this opportunity to provide our comments.

Very truly yours,

Jill Escher
President

Immersed: Our Experience with Autism
Text by Valerie Hall
Photographs by Bruce Hall

By Jill Escher

I’ll start this review with a fitting quote from the late galactic princess, actress and author Carrie Fisher. Talking to Charlie Rose, she said, "I like the truth in any form. It only bothers me if I'm asked the truth about other people, I cannot tell their truth. I will tell mine in any form."

When it comes to the difficult subject of autism, personal truths are hard to come by these days. The media tends to emphasize the small-victory stories like the spectrum boy whose 3-point shots brought his team to victory, the quirky, withdrawn young men who land specialty jobs at tech companies, or the troubled autistic girl belting out a holiday song on YouTube. And in advocacy circles, one is hardly allowed to mention the unremitting turmoil, exhaustion, and despair present in many autism homes without incurring the wrath of a militant minority that has anointed itself with the job to paint an infinitely rosy picture of this mysterious and often incapacitating brain disorder.

But Valerie and Bruce Hall, a couple living in Southern California who have twin boys with severe autism, take the Carrie Fisher approach and rather than trivializing or minimizing the tragic dimensions of their boys’ disorders or pretending to speak for all with “autism,” the talented duo steadfastly tell their own truth. And they tell it hard, in both words and pictures in this unusual large-format art book, acknowledging that autistic kids like theirs “generally do not make inspirational news stories.” Bruce, a photographer who has been legally blind since birth, tells his truth in photographs, while Valerie, a gifted writer with a poetic bent, shares her painful reality in poignant prose accompanying the images.

Immersed is not the first to take the art-book approach to portraiture of classic forms of autism. I know of Echolilia, by Bay Area photographer and autism dad Timothy Archibald, and Understanding Stanley by UK autism mom Rosie Barnes. Photography fans should also check out photographer Mel Lindstrom’s artful series on Elevators, created in honor of his autistic son’s obsession. Immersed is a jewel in this subgenre, for it vividly opens the world’s eyes to an all-too-often hidden tragedy, and invites the broader society to understand, and to help. As autism rates skyrocket (up 40-fold in California over the past 30 years, soon to reach an astonishing 100,000 severe cases) each autism story should not only be told, but considering the vast societal implications, should also be considered front-page news, adorned with blazing neon lights, clanging alarms and giant arrows flashing “READ THIS! ” I wish all autism families had the ability and drive (and time) to tell their stories as the Halls have done, for the public deserves to hear hard truths about autism that will affect us as a society for decades to come.

As I first leafed through the book, seeing picture after picture of the twin boys James and Jack with vacant expressions and engaged in the most simplistic of repetitive of behaviors (jumping, splashing, screaming, spinning, swinging, for example), my favorite definition of the word “autism” came immediately to mind. The late Bernie Rimland, in his seminal book “Infantile Autism,” published 52 years ago, offered perfect terminology when he called the central dysfunction of autism a “closed loop phenomenon.” He likened autism brain circuits to a track lacking switches and sidings that would promote integration of complex information. Instead “raw material comes and goes, but the parcels are never opened and their contents are not mixed to form any useful compound.” In autism, said Rimland, “stimuli are apprehended but not comprehended,” resulting in profound learning disability and behavioral abnormalities that are the outward manifestation of an inner world stuck on a closed loop rather than a flourishing web of connections fundamental to meaning, cognition and development (Infantile Autism, 50th Anniversary Edition, p. 111).

This exasperating and stubbornly intervention-resistant closed-loop phenomenon is the core of the autism portrayed in Immersed. While the likes of author and inventor Temple Grandin may get all the attention, she and other highly articulate and intelligent people do not come close to representing this catastrophic core mental dysfunction. Indeed, Jack and James are poster children for classic closed-loop autism. They appear in the photos to be virtually imprisoned inside the misfiring loops of their funky-wired brains. While their typically developing older sister Christina peers from the pages with a sparkling intelligence that connects effortlessly to the people and things around her, the boys are lost in small worlds, or circularities, of their own. James stares at a spinning top. He plugs his ears to keep out sounds. In spite of many efforts to curtail the behavior, Jack bangs his head, leaving a red bruise.

The photos are at once in-your-face and immediate—probably a byproduct of Bruce’s visual limitations and inability to see from a distance—but also remarkably non-intimate in the sense that the subjects never connect to us through the camera. Typical boys of Jack and James’ age clown for the camera, gesturing, sticking out their tongues, showing off, smiling, or otherwise performing kid antics. But these young subjects have no awareness of the camera’s function, they never pose or react or are seen doing anything remotely purposeful in response to their father’s clicking of the shutter.

Those of us who live with severe autism can easily relate to many of the pictures as scenes ripped straight from our own lives. The miserable therapist fruitlessly trying to teach a basic “feed the baby” task as the oblivious autistic student instead flicks plastic utensils. A helpless grandfather going through the joyless ritual of a birthday party that means nothing to the boys except for the pleasure of being able to fiddle with new mylar balloons. Boys wearing Halloween costumes but not having a clue what the outfits mean. A boy jumping high and flapping his hands at the sight of a wave at the beach. The boys are seen alternatively biting a swing, ripping out plants, splashing in water, staring intensely at their hands or plastic rings, screeching, scribbling, running about naked. These private scenes, artfully captured with originality and multi-layered meaning, are all too familiar to me and so many other families.

The visions of daily chaos and surreal disconnection are matched by Valerie’s uncanny ability to capture on paper the despondent interior ruminations that clearly occupy her—and the heads of many other autism parents. In one of those “We’ve been there, too” moments, Valerie describes when Jack escaped out the back gate and was found some minutes later in a recliner in a neighbor’s garage, rocking back and forth, holding a newspaper. She writes:

I’ve heard variations of this sudden-escape story from dozens of autism parents, but rarely is this story told so well, capturing the simultaneous joy and heartbreak of the moment. In spite of the gritty-reality approach, the book never loses respect for the boys and is never without love. In a theme common to autism parents, two narratives play tug-of-war in her heart: “Every day, I embrace the reality of who Jack is. I close up the wound, tell it to heal. Every day, Jack grows, and does not grow. And the wound is reopened. As long as he is here, as long as the days keep coming, the losses recur and evolve and accumulate. I see and love Jack for who he is. I see and mourn Jack for who he will never be….”

Valerie expresses a fairly universal autism-mom experience when she describes going through daily life feeling almost alien “among all these people with their normal lives, normal concerns, normal frustrations and problems.” But it’s the lack of growth, development and learning that most distresses her. Every day is Groundhog Day at the Hall residence, with precious few skills achieved over the years in spite of endless therapies and interventions. The stunted development is in sharp contrast to the hyperabundance of caregiving, cleaning and chaos.

For me, the book also provokes important questions. Why do Jack and James have autism in the first place? (The book does not address this, but from a public health and social services point of view, it’s clearly an urgent question, and since my main focus in autism is crafting pilot research projects examining causes of genomic disruptions I could not help but wonder.) Why have cases like these, once so exceedingly rare that pediatricians would see one or two in the entire course of a career, been surging in number since the 1980s? Who will care for the boys and the countless thousands like them as they age into adulthood and parents become infirm and die?

It also begs the question, what is "autism"? Valerie voices a simmering resentment toward trendy Pollyanna views of autism and the euphemism-mongers of the neurodiversity movement, who consider autism just a difference, or even a gift, and not a disability. She writes:

Her words reminded me of a panel at the Autism Society of America conference last year, featuring parents who felt abandoned and ignored by autism advocacy movements which chose to emphasize happier narratives, or disregard the severe side of autism, not to mention countless other parents with whom I work each day. Valerie is hardly alone in her sentiments: autism is a term now used so broadly that it has prompted ridiculous infighting and needless confusion.

The book ends on a slightly hopeful note with James finally, at age 10, learning how to say a word, reminding us that people with autism, even profound autism, do have potential to learn and develop. And the besieged family is finally afforded some relief when they find placements for their boys in a group home. Many parents like the Halls, including those on the ASA panel mentioned above, who lived the same tumultuous existence found sanity and peace only when they placed their children in the hands of staff trained and equipped to care for them in group homes. For those parents, as for the Halls, the placements, however imperfect, were godsends that enabled the families to survive; parents who had seriously considered suicide or murder-suicide after years of exhaustion and anguish found a relief valve. For her part, Valerie finds her time with the boys can now be spent focusing on nurturing connections rather than drudgery: “Before the boys were placed in a group home, we were so worn down by the many and varied challenges of autism that we could only rarely actually enjoy being with them.”

This is possibly the ultimate message of the book: autism can be so hard and demanding that no family can go it alone, and it must be seen and treated as a shared social responsibility. It is art serving as a cry for help. It will take more than a village to create solutions for this burgeoning population of severely mentally disabled individuals who need lifetime care. In the meantime, it is urgent for parents like the Halls to share their own truths.

Buy the book: http://a.co/0vIaSTx

Bruce Hall's website: www.brucehallphoto.com