art show and reception // july 29, 2017, 1:00pm – 4:00pm
sorensdale recreation center - 275 goodwin street // hayward, california

Harambee Community Services in collaboration with The Harder Tennyson Area of Hayward is proud to present an exhibition of artistic works from adults and youth, with and without disabilities. Featured are group murals and individual paintings that share the diverse creativity of the artists. Now we would like to share them with you.

R.S.V.P by emailing - events@harambeekc.org
For more information call 510 599 0313
www.facebook.com/HarambeeCommunityServices
www.harambeekc.org

Refreshments will be served.

Art Places and New Faces is a program supported by a grant from The San Francisco Foundation
In support of our artists, each piece of art will have a suggested donation. Come early to submit your bid.

Vignettes
June 29 - September 2, 2017

Exhibition Opening: Thursday, June 29
Members' Preview: 11am-2pm
Main Event: 5pm-8pm
with Live Music by DJ MeGlow

Bar + SnacksAn entire world can be conjured with a series of brief expressions, a group of distilled moments, or a succession of brush stokes. In Vignettes, Creative Growth presents discrete bodies of work that provide a glimpse of something larger. We invite you to enter the narratives, discover the characters, and explore the ideas evoked by Creative Growth artists Joseph Alef, Rosena Finister, Rosa Giron, Zina Hall, John Hiltunen, Franna Lusson, John Martin, Laura Jo Pierce, William Tyler, Ron Veasey, Alice Wong, and Ying Ge Zhou.

Ying Ge Zhou and Ron Veasey each produce impressionistic portraits. Over her lucid line drawings of fashionable persons, Ying Ge’s watercolors bleed and mingle as if still in motion; the dynamic characters are just barely captured by the artist’s hand. The glances between the boldly depicted beings in Ron Veasey’s paintings pull the viewer into their lives. With each piercing gaze, side-eyed glance, or a flippant smile, a story is revealed.

Working in abstract mode, Laura Jo Pierce’s large-scale pastel text-scapes and Joseph Alef’s frenetic fields of color create impressions of shifting atmospheres and complex moods.

Other artists work in series. Like frames of a film, an idea is developed in the relationship of parts to a whole. Using a found flipbook and applying her characteristically vibrant swathes of paint, Alice Wong increasingly abstracts a banal moment in the life of designer Valentino while William Tyler iterates and re-iterates flags, figures, and forms, implying each still scene is but one moment in a world unto itself.

On the Ramp: Charles Smith
For the first time, Charles Smith, whose surrealist work blends scenes and figures from popular culture in different settings, will be featured on the ramp.

More information: http://www.creativegrowth.org/exhibitions/vignettes/?mc_cid=188100ddb8&mc_eid=a20eb3f2b6

by Connie Boyar Frenzel

Approximately 50% of Regional Center services are dependent on federal Medicaid funding. For adults with autism, this funding helps pay for essential services such as day programs, supported employment, supported housing, therapies, transportation, even adult diapers. These core, basic services for adults with autism are now at risk. California is already struggling with under-funded services for the disabled. Caps and block grants would make matters worse.

The Senate bill, the Better Care Reconciliation Act of 2017 calls for a huge drop in Medicaid spending. This would devastate adults with autism and all those with developmental disabilities. They are collateral damage in this bill that also targets services for the poor and elderly.

The Senate is delay its vote until after the July 4th recess. Five Republican senators are stating they will oppose the senate bill this week which would mean the bill will not pass. However they could change their minds. Public pressure can influence legislators. 

TAKE ACTION NOW

Call friends, relatives and colleagues in states below and ask them to advocate to their senators.

Ohio: Rob Portman
Tennessee: Bob Corker
Wisconsin:  Ron Johnson
Utah:  Mike Lee
Kentucky:  Rand Paul
Maine:  Susan Collins
Alaska:  Lisa Murkowski and Dan Sullivan
Nevada:  Dean Heller
West Virginia:  Shelley Moore Capito
Arizona:  Jeff Flake
Colorado:  Cory Gardner
Louisiana:  Bill Cassidy
Pennsylvania:  Pat Toomey
Montana:  Steve Daines
Nebraska:  Deb Fischer and Ben Sasse
Missouri:  Roy Blunt
Indiana:  Todd Young
Georgia:  Johnny Isakson
Alabama:  Richard Shelby
Florida:  Marco Rubio

Autism Society of America issued talking points and suggested letters, and social media suggestions through their toolkit just released. http://www.autism-society.org/wp-content/uploads/2017/06/ASASaveMedicaidToolkit2017.pdf

• DO NOT cut, change or restructure Medicaid.
• Any change to the structure of Medicaid or cuts would impact individuals with autism.
• Program cuts, along with block grant or per capita cap proposals would hurt individuals with autism who have no
alternative means of paying for essential services.
• These proposals will shift costs to states, beneficiaries and/or their families, and providers of services.
• States will have no choice other than to cut services and eligibility as they have fewer and fewer federal resources to address ongoing health needs for a growing and aging population, individuals with disabilities, and low-income communities.
• Changes to the funding structure of Medicaid could limit the availability of critical and cost-saving preventative care
• Medicaid provides critical health care services to children across the country in a variety of settings, including in schools.
• Do NOT allow states to opt out of requiring health plans to cover essential health care benefits
• DO NOT vote without a CBO score of the final version of the bill the Senate votes on and adequate time for Senators and the public to understand how it will affect the American people.
• Reject any bill that causes large coverage losses, ends the Medicaid expansion, caps and cuts the Medicaid program, or guts critical protections for people with health conditions.

Also:

• Call the Senate Finance and HELP Committees and demand they hold hearings BEFORE they bring the bill to the floor for a vote: Call the Senate HELP Committee at 202–224–5375 and the Senate Finance Committee at 202–224–4515

Here's how to contact your Senators:

• Telephone calls: Use the Congressional switchboard at (202) 224-3121 and ask to speak to your senator—tell them where you live and you will be directed to your senator's office
• By Fax: Use https://faxzero.com/fax_senate.php to find your Senator's fax number.
• Social Media: Use contactingcongress.org to find email addresses, Twitter names, and Facebook pages for your Senator.
(Credit given to DREDF for the above action alert)  

Thank you for your activism.

By Jill Escher

I am no expert on botany but is it my imagination or am I seeing a huge abundance of poison hemlock plants here in Northern Calif this year? Normally such sightings might be a mere curiosity, but for me, the mother of two children with autism who are known to chew and ingest any number or sticks, plants and leaves within grabbing distance, this seems like a major threat. Why? Hemlock is so toxic that even a small dose can be fatal.

As much as we might not like it, a lot of kids and adults with more severe forms of autism (mine are both nonverbal and severe) compulsively chew on or ingest inedible objects, including plants. For many of them, interventions, including behavior modification, fail to reduce the incidents. So when you take kids or adults of that persuasion on a hike, as I often do, some degree of plant grabbing-chewing-eating is fairly inevitable.

In my experience, this is almost always harmless. But now, enter poison hemlock, which blooms in the summer months.

The past winter and spring brought heavy rains. This, according to the Master Gardeners of Santa Clara County, has generated growth of all sorts of plants, including the hemlock. So no wonder I've seen stands of it nearly everywhere we hike and adventure, for example, in Rancho San Antonio, Alum Rock Park, Half Moon Bay Coastal Trail, and most recently, Seabright Beach in Santa Cruz. In fact, my daughter and I were exiting the beach when she grabbed at the plant and before I could even say "Stop!" or "Oh my frickin' gawd!" a piece of stalk was in her mouth. I quickly nabbed it and rinsed her mouth, and all was well. But, I thought, what if I was one of those autism parents who did not know about the dangers of hemlock? Well, my daughter might easily be dead, or on a ventilator.

Which is the reason for me writing this blog. Autism parents must learn how to spot this plant. This is a life or death matter. I know, what autism parent wants to ascend the learning curve of yet another topic, or impose on themselves yet another worry? But you must: just a few leaves, or other parts, of the hemlock plant can kill—a small dose can cause respiratory collapse. And according to news reports, hemlock is abounding all over the country, not just here in Northern California. If you spend time outdoors, as we do, please take just three minutes to familiarize yourself with this nasty plant.

There are two types of hemlock relevant for our purposes: poison hemlock (Conium maculatum) and water hemlock (Cicuta douglasii). These two are different plants, with different features, and that cause different types of poisoning. Though water hemlock is the more acutely poisonous, I discuss poison hemlock here because that's the species I've been seeing out on the trails.

Where it's found: Along trails, creeks, creekbeds, roadsides, and irrigation ditches. On edges of cultivated fields and in waste areas.

It flowers in June-July, when it is most toxic. But the dry plants retain toxins for a few years.

At left, the clump of poison hemlock growing by the Santa Cruz Harbor, at the entrance to Seabright Beach, in mid-June.

Flowers: The flowers are small, white, clustered in umbels up to 4–6 inches across. An umbel is a group of short flower stalks which spread from a common point, somewhat like umbrella ribs.

This is the flower and seeds when dried up. Still poisonous in this state, though apparently less so.

Leaves: The leaves have an arrowhead configuration. They are fern-like, toothed, finely divided and have a strong odor when crushed.

Stalks: The plant typically grows about 6-8 feet tall, it is notable for its smooth and not-hairy stalk. The stalk, which is hollow, is often purplish at the base, with some purple spots further up the stalk. However, I have seem some plants with a minimum of purple blush at the base and very few splotches up the stalk, so beware.

I've found videos more helpful than static websites at helping me identify the plant, here are a few:

• Someone called The Nature Dude: https://www.youtube.com/watch?v=NJ0pqziTb1Q
• Short video comparing poison hemlock and water hemlock: https://www.youtube.com/watch?v=22TUOjdGKII
• From Oklahoma, but still the same plant: https://www.youtube.com/watch?v=NyGMhtdbLQI
• About hemlock infestation on the Truckee River: http://www.kolotv.com/content/news/Poison-Hemlock-found-near-Truckee-River-423728634.html

Again, big disclaimer— I am just a mom and not a botanist, or even a gardener. I encourage you to do your research until you become comfortable identifying this potent bit of our local flora. Thanks for your attention, I have the deepest sympathy for all my fellow autism families where kids compulsively chew or eat plants, and I wish you happy and safe hiking and exploring.

Autism Society San Francisco Bay Area is a community partner with this year's San Francisco Jewish Film festival, which is screening two films with developmental disability/autism themes (see description below). Many more films with diverse subject matter are part of this festival running in various locations through August 6.   

Tickets and Passes are available for purchase  on line https://sfjff.org ; by phone  415.621.0523.  Monday - Friday, 6/20-8/4, from 11:00AM to 5:00PM. During the Festival, tickets are available to purchase at our Festival Box Offices located at any of our Festival  venues/theatres. Festival Box Offices open one hour prior to the first screening time of the day and close 15 minutes following the last screening of the day.

DINA- A CENTERPIECE DOCUMENTARY
Winner of the Sundance Film Festival's U.S. Documentary Grand Jury Prize

Dina and Scott are in love, moving in together and planning a wedding, a stressful time for most couples. But Dina and Scott are not a typical couple. Dina is a 49-year-old woman with a tragic past. Scott, who has never lived away from his parents, is a Walmart greeter. Both are adults with developmental differences, for whom love, sexuality and independence are fraught with challenges. Dina chronicles this poignant time in their lives and offers a glimpse into the world of people on the mental development spectrum.
Screened on Tuesday July 25 at 6.10 PM at Castro Theater, San Francisco
Sunday August 6 at 4.15 PM  Albany Twin Theater
Go to https://sfjff.org/films/film-guide/dina for more information and to buy tickets

KEEP THE CHANGE
Winner of Best Narrative Feature and Best New Narrative Director, Tribeca Film Festival
 
In a refreshingly honest way Keep the Change portrays two adults on the autistic spectrum. David desperately wants to be seen as “normal,” but Sarah accepts who she is. Together they navigate the vicissitudes of a burgeoning relationship. Writer/director Rachel Israel has an obvious affection for her characters, which infuses this poignant and funny film from the first frame to the last.
Screened opening nights
Sunday July 23,  6.40 PM  Cine Arts Palo Alto
Sunday July 23, Sunday July 30 at 6.15 PM  Albany Twin 
Saturday August 5,  6.45 PM  Christopher Smith Film Center, San Rafael
Go to https://sfjff.org/films/film-guide/keep-the-change for more information and to buy tickets

by Connie Boyar Frenzel, SFASA board member

There’s been a lot of press about the repeal and replacement of the Obama Affordable Care Act concerning affordability, access, premiums, and pre-existing conditions clauses. Yet far more dangerous to our children and adults with autism, developmental disabilities and the elderly poor are the massive changes proposed to the Medicaid system, called Medi-Cal in California, i.e. block grants and cost caps. 
 
What Medicaid/Medi-Cal pays for and why cutting this already lean program puts millions of elderly and disabled Americans at risk of losing vital services and medical care essential for their very lives.

Action you need to take  to Save MediCal and our services today

Action alert below  courtesy of Disability Rights and Education Defense Fund  (DREDF)

In California we need you to call your friends, relatives in the key states below and ask them to advocate on your family’s behalf  to their senators. We must put pressure on senators to oppose the AHCA!  The more constituents that call or fax or email the more they will listen.

Key States and Senators

Maine:  Susan Collins
Alaska:  Lisa Murkowski and Dan Sullivan
Nevada:  Dean Heller
West Virginia:  Shelley Moore Capito

Arizona:  Jeff Flake
Ohio:  Rob Portman
Colorado:  Cory Gardner
Louisiana:  Bill Cassidy
Pennsylvania:  Pat Toomey
Montana:  Steve Daines
Nebraska:  Deb Fischer and Ben Sasse
Missouri:  Roy Blunt
Wisconsin:  Ron Johnson
Indiana:  Todd Young
Georgia:  Johnny Isakson
Alabama:  Richard Shelby
Florida:  Marco Rubio

The Senate leadership plans to bring the AHCA to the floor before the end of June. Draft language may already have been sent to the Congressional Budget Office without any scrutiny by or input from the public or Democratic senators. This is not the way a democracy should work.

The fate of this bill is up to a few senators and hearing from their constituents will have an impact on them. They need to hear from their constituents.

The message: "I'm calling to ask the Senator to reject the parts of the AHCA that would convert Medicaid funding to a per capita cap or block grant, force people with pre–existing conditions into high risk pools, or allow insurers to put out worthless insurance products. No one should lose health insurance."

Lives and our services are at risk.

Don't live in one of the key states?

• Call the Senate Finance and HELP Committees and demand they hold hearings before they bring the bill to the floor for a vote:  Call the Senate HELP Committee at 202–224–5375 and the Senate Finance Committee at 202–224–4515

• Reach out to friends, family and your networks in the key states and ask them to call or email their senators.

Here's how to contact your Senators:

• Telephone calls: Use the Congressional switchboard at (202) 224-3121 and ask to speak to your senator—tell them where you live and you will be directed to your senator's office

• By Fax: Use https://faxzero.com/fax_senate.php to find your Senator's fax number.

• Social Media: Use contactingcongress.org to find email addresses, Twitter names, and Facebook pages for your Senator.
 
Thank you for your activism.

SFASA submitted the comments below on the proposed CalABLE regulations—it sounds like an arcane topic, but it could have sweeping negative impacts on the ability to open and manage CalABLE accounts for adults with significant intellectual disabilities. Please let us know your thoughts. —SFASA

Carrie Fisher Stone, Deputy Executive Director
California ABLE Act Board
915 Capitol Mall, Room 101
Sacramento, CA 95814
By email to: carrie.fisherstone@treasurer.ca.gov

June 12, 2017

Re: Comment on CalABLE proposed regulations—urgency to include conservators as Authorized Legal Representatives

Dear Ms. Fisher Stone:

Thank you for this opportunity to provide comment on the proposed regulations posted at http://www.treasurer.ca.gov/able/resources/regulations/proposed-regulations.pdf.

Autism Society San Francisco Bay Area (SFASA) is concerned about the lack of clarity regarding who can qualify as an "Authorized Legal Representative" (ALR) to establish and manage a CalABLE account on behalf of an Account Owner (person with a disability). If the ALR provision is construed narrowly, tens of thousands of California’s most severely disabled adults will be de facto excluded from participation in CalABLE, in clear contravention of the intent of a law crafted to make saving simpler and to reduce associated management burden and costs.

Adults with intellectual disabilities, including those with autism, often by necessity become subjects of limited conservatorships. In California, for an individual age 18 or older, a parent or other interested caregiver can petition the court to establish a "conservatorship of the person" and/or a "conservatorship of the estate."

The great majority of our autism families limit their petitions to those of the person, and not of the estate. This stems from two simple reasons: first, the conservatee has almost no prospects for earning income (the conservator is usually named a representative payee for SSI, and other savings held for the benefit of the conservatee are typically gifts and bequests in special needs trusts, if any) and, second, the conservatorship of the estate involves bonding and reporting to the court that imposes a significant and unnecessary administrative burden on the conservator.

As currently drafted, Section 9001(c) provides:

• The Authorized Legal Representative may be a parent or legal guardian of the Account Owner or may be a person granted a valid durable power of attorney to manage banking and investment matters on behalf of the Account Owner and to take all necessary actions on behalf of the Account Owner with respect to the account.

This proposed language is insufficiently clear regarding who may act as an Authorized Legal Representative. First, aside from the POA route, it refers only to "parents" or “guardians” as potential ALRs. The term “parent” may be construed as having legal meaning only as to minors, and not as to adults). While other states use the term “guardians” to refer to court-appointed individuals who make decisions of behalf of the disabled adult, the proper word in California is “conservator.” But the language makes no reference to conservators. The POA provision offers no lifeline, since these are often unavailable to our population owing to their lack of mental competence to execute such a document. Therefore, the language of the proposed regulation leaves open the question of the power of the conservators, who may or may not be parents or other family members, of intellectually disabled adults.  

In light of this serious omission, we suggest that the language (in caps) be added as follows:

• The Authorized Legal Representative may be (1) a parent or legal guardian of the Account Owner, (2) A CONSERVATOR (OR LIMITED CONSERVATOR) OF THE PERSON AND/OR CONSERVATOR (OR LIMITED CONSERVATOR) OF THE ESTATE FOR THE ACCOUNT OWNER, or (3) may be a person granted a valid durable power of attorney to manage banking and investment matters on behalf of the Account Owner and to take all necessary actions on behalf of the Account Owner with respect to the account.

Inclusion of conservators as ALRs is not only functionally necessary to effectuate these savings accounts for the subpopulation of persons with intellectual disabilities subject to conservatorships, it is altogether appropriate given the purpose and structure of the ABLE program, given the great many robust built-in legal protections for Account Owners already in place, to wit:

(1) Conservators have the legal and court-supervised duty to act in the best interests of the conservatee.

(2) The ALR is sharply limited in terms of investment discretion.

(3) The ALR has the legal duty to maintain complete records of distributions. Taxes and penalties apply for non-qualified distributions. Conservators and representative payees also have reporting duties to Social Security and the IRS.

(4) The ALR expenditures are limited to qualified disability expenses.

(5) ABLE accounts have low maximums ($100k, a low sum compared to true expenses to support an adult with a severe intellectual disability) in terms of what can be saved before loss of essential benefits.

(6) Finally, in the event that an amendment to the Probate Code may be considered necessary to solidify the rights of conservators of the person to serve as ALRs, such an amendment could be accomplished in a single line of text, eg, “Conservators of the person are granted the authority to serve as Authorized Legal Representatives for CalABLE Accounts, notwithstanding any other provision of the Probate Code pertaining to conservators of the estate.”

If obtaining requisite authority would require a potential Authorized Legal Representative to apply for formal conservatorship of the estate, we anticipate sharply reduced participation in the program, as this can entail additional court costs and ongoing and significant administrative burdens. Because of this, unless conservators of the person are authorized to serve as ALRs, paradoxically, the most severely impaired Californians would be de facto excluded from participation in CalABLE.

The ABLE Act was created to encourage and assist individuals and families in saving  private funds for the purpose of supporting individuals with disabilities to maintain health, independence, and quality of life. It would be tragic if a large portion of our most severely disabled adults were essentially barred from participation in the benefits of ABLE due to a conservatorship of the estate prerequisite—a tremendous burden that was clearly never intended by Congress when it passed the ABLE Act.

SFASA staunchly defends the rights of conservators to help create savings and administer funds to improve the quality of life of their severely intellectually disabled loved ones, particularly when it involves a type of account explicitly created to facilitate savings for this particular subpopulation. We thank you for your consideration, and please let us know if we can be of any further assistance.

Very truly yours,

Jill Escher
President

By Jill Escher

At the IMFAR pre-conference panel on "Meaningful Outcomes in Adulthood" this year I was pleased to see a brief presentation by UCSF's Janet Miller, PhD JD (left) summarizing the variety of public programs that can help support adults with autism. I asked her if SFASA could share her slides with our audience and she agreed. So, thanks Dr. Miller for, as I quipped at the conference, taking our day-long conferences and boiling them down to 15 minutes!

Please click on the slide above to download or view her PDF. A preview slide is below.

Got some downtime this summer, on a plane, on the beach, on the hiking trail, and looking to tune into some autism talk? Put on some earbuds and check these out:

• Autism Science Foundation Podcast. Each week, host and ASF Chief Science Officer Alycia Halladay, PhD tackles the latest autism research news with a layperson-friendly flair. Free here.

• Autastic: The Comedian's Guide to Autism Podcast. Each week, comedians Kirk Smith and Graham Kay, both of whom have loved ones with autism, discuss their lives and broader topics in autism in their trademark funny and heartfelt way. SFASA president Jill Escher makes an occasional appearance as their roving reporter. Free here.

• SFASA Spring Webinar Series. Tune into our 7 recent webinars, on employment, puberty, police encounters, ECT, UCSF research, social opportunities, and MIND Institute research. Free here.

• SFASA Conference Archives. Missed our past three conferences? All the main speakers continue to offer their wisdom via our archives. Free here.

• Attorney Steve Dale's Educational Videos. Local estate planning attorney Steve Dale has compiled a video channel packed with info about special needs planning and policy. Free here.

• UC Davis MIND Institute Distinguished Lecturer Series. Speakers from around the world, now in its 14th season. Free here.

• In a Different Key: The Story of Autism, by John Donvan and Caren Zucker, audiobook. (Fee) here

Yesterday we wrapped up our Spring Webinar Series, which included 7 webinars on a great variety of topics, and featuring a total of 22 outstanding speakers. All the archives are free, and here are the links to all of them.

The Autism Job Club: The Neurodiverse Workforce in the New Normal of Employment
with Michael Bernick, author and attorney

Watch the archive

Guy Stuff: Teaching Social Expectations around Hygiene and Puberty to Young Men with Verbal ASD and Aspergers
with Ryan Wexelblatt, LSW, Director of the Center for ADHD, Pennsylvania

Watch the archive

Autism and the Criminal Justice System: What Happens When Your Adult Child with ASD Is Detained or Arrested by Police?
with Emily Iland and Tom Iland, BE SAFE the Move

Watch the archive

ECT and Treating Dangerous Behaviors in the Developmentally Disabled
with Amy Lutz, journalist and author, founder EASI Foundation

Watch the archive

Inside UCSF: Latest Advances in Autism Research, and How You Can Help; Plus, an Intro to the UCSF Star Center for Autism
with Elliott Sherr, Robert Hendren and Vanessa Hus Bal, researchers, and Whitney Ence

Watch the archive

Panel on Social Opportunities for Bay Area Adults on the Spectrum
• Trudy Grable, The BFF Project  
• Liz Sandoval Kane, Shire House
• Greg Yates, AASCEND
• Trang Nguyen, Gatepath
• Meg Fields, Aspen Network
• Jan Johnston-Tyler, EvoLibri
• Katy Ankenman, MSW, LCSW, STAR Center UCSF
• Lance Scott, The Arc San Francisco (Friends Like Me program)

Watch the archive

Inside MIND: A Look into Research at the UC Davis MIND Institute
with David Amaral, Judy Van de Water, Christine Nordahl, Irva Hertz-Picciotto, and Sally Rogers

Watch the archive

Thank you to all our presenters and audience members!

Questions or comments? Email info@sfautismsociety.org.

What happens to adults with autism when they age out of the school system? The new mini documentary series #Imagine21 from Madison House Autism Foundation highlights the challenges and opportunities facing this new wave of young adults aging out of school and into a less supported adult system.

Each film profiles an individual with autism, aiming to help viewers come to a fuller understanding of the value they have to add to our lives when we as a community respond to the challenges they face. Watch all the videos at http://www.madisonhouseautism.org/imagine21-mini-documentary-film-series-autism-21/.

If you’d like to contribute to this project, please donate to Madison House Autism Foundation.