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Loving Lampposts: synopsis and director’s statement

31 Mar

Loving Lampposts, the new documentary by filmaker Todd Drezner, takes a look at autism and parts of the autism communities in America today. After my initial piece on the documentary, I read the press kit again and thought that the synopsis and director’s statements really should be up here on LeftBrainRightBrain.

Synopsis:

As autism has exploded into the public consciousness over the last 20 years, two opposing questions have been asked about the condition: is it a devastating sickness to be cured? Or is it a variation of the human brain — just a different way to be human?

After his son’s diagnosis, filmmaker Todd Drezner visits the front lines of the autism wars. We meet the “recovery movement,” which views autism as a tragic epidemic brought on by environmental toxins. Operating outside the boundaries of mainstream medicine, these parents, doctors, and therapists search for unconventional treatments that can “reverse” autism and restore their children to normal lives.

We meet the ‘neurodiversity’ movement, which argues that autism should be accepted and autistic people supported. This group argues that the focus on treatments and cures causes the wider society to view autistic people as damaged and sick. Acceptance is the better way, but how do you practice acceptance of autism in a world where the very word can terrify parents? And we meet a too often ignored group: autistic adults. It’s these adults who show just how tricky it is to judge an autistic person’s life. Is an autistic woman who directs academic research about autism recovered? What if the same woman has trouble speaking and uses text-to-speech software to communicate? Is an autistic man who lives in his own apartment recovered? What if his mother must hire people to do his laundry and take him out in the evenings?

This wide angle view of autism makes clear what’s at stake in the autism wars. Will we live in a world dominated by autism conferences where vendors hawk vitamins and hyperbaric chambers to parents desperate for a cure? Or will we provide the support that autistic adults need to lead the best lives they can? And can these two worlds possibly co-exist?

Director’s Statement:

One afternoon in August of 2007, I was pondering possible documentary subjects as I brought my son Sam home. We had just finished walking the circuit of lampposts that Sam liked to visit in Prospect Park.

At the time, Sam’s diagnosis of autism was a few months old, and he was about to start at a special needs school in Brooklyn. His diagnosis still felt strange to my wife and me, especially because we didn’t seem to be reacting like many autism families that are depicted in the media. We didn’t feel like Sam had been “stolen” from us. He wasn’t sick. He hadn’t lost any skills. We didn’t think his life was doomed to be a tragedy. Certainly, we were concerned about how best to support Sam, but he was very much as he had always been. It was just that his differences from typical children now had a name attached to them.

My wife had been exploring the autism community on the Internet and had come across a group of autistic adults and parents of autistic children who supported “neurodiversity”–the idea that autism is both a disability and a difference, a natural variation of the human brain. This idea felt right to us, and yet I wondered: Sam did not have many of the most difficult behaviors associated with autism. Would we still believe in neurodiversity if Sam was banging his head on the wall or rocking endlessly in a corner? Was a parent’s view of autism simply a function of how difficult his child was? On that August afternoon, I realized that such questions would be a perfect subject for a documentary, and Loving Lampposts was born.

In the more than two years since, I’ve immersed myself in the world of autism at the same time that the world at large has paid more attention to autism than ever before. Never has a community been less ready for its cultural moment than the autism community. Indeed, there is disagreement about whether autism is a disease, about how to treat it, about whether it is an epidemic, about whether it can be cured, and even about what it is.

These disagreements are on full display in Loving Lampposts. And yet, at the end of the process, I can’t help but be optimistic. I’ve met parents of severely autistic children whose patience, acceptance, and support of their kids are truly inspiring. I’ve met autistic adults–whose voices are too often ignored in the autism debate–who lead rich, full lives even as they struggle with the challenges of their disability. And I’ve seen Sam progress in ways I couldn’t have imagined two years ago.

He’s still profoundly different from other children. But in making the film, I’ve seen that there may be a place in the world for Sam and those like him. I hope that audiences that view Loving Lampposts will see that, too.

Loving Lampposts can be purchased here.

Seeking Organizations & Informal Groups to Sign-on: Support IDEA Fairness Restoration Act

24 Mar

From Wrightslaw: Seeking Organizations & Informal Groups to Sign-on: Support IDEA Fairness Restoration Act.

The Council of Parent Attorneys and Advocate’s (COPAA) and the Autism National Committee (AutCom) have drafted a letter to present to legislators in support of allowing families to be reimbursed for expert witness fees when they prevail in due process hearings.

They are looking for sign-ons to the letter from formal and informal groups:

Organizational sign-ons are welcome from disability organizations and groups, formal or informal; informal networks of attorneys and advocates and others; parent support groups; health, civil rights, and other related organizations or groups; nonprofit organizations, public interest law firms and organizations, associations, and any other supportive groups.

Here is the letter:

We, the undersigned organizations, urge Congress to pass the IDEA Fairness Restoration Act, S.613 and H.R. 1208. The bill would overturn the Supreme Court decision in Arlington Central School District v. Murphy by restoring Congress’ original intent in enacting the Handicapped Children’s Protection Act of 1986 that parents who prevail in administrative hearings and court actions be allowed to recover expert witness fees as well as attorneys’ fees.

Under the IDEA, schools are required to provide a free appropriate public education (FAPE) to children with disabilities. Congress recognized long ago that there will be times when parents and school districts differ as to what constitutes FAPE and that in those situations parents should be allowed to seek a hearing before an impartial administrative hearing officer. In those hearings parents must provide testimony from such expert witnesses as psychologists, doctors, therapists, and educational experts to prove that FAPE was not provided to their children. However, nearly 36% of children with disabilities live in families earning less than $25,000 a year; over two-thirds in families earn less than $50,000 a year. For both low and middle income parents, the right to due process is real only if the fees of these experts are shifted when they prevail.

Prevailing plaintiffs in ADA, Title VII, and other civil rights have the statutory right to recover expert witness fees. We ask Congress to take action to restore its original intent and provide this same right to parents who prevail in IDEA cases.

Nor would this bill be burdensome for school districts. Parents proceed to litigation only as a last resort. In 2003, the GAO reported that there were only 5 hearings per 10,000 special education students. Only parents who prevail could recover fees; parents who do not prevail could not.

We ask Congress to pass the IDEA Fairness Restoration Act, S. 613 and H.R. 1208. Restoring Congress’ original intent the Handicapped Children’s Protection Act is important to ensure that parents are not deprived of their right to due process because they cannot afford expert witnesses. Thank you very much for your support.

Please contact either of us if you have questions. Thank you very much for your support.

Jessica Butler, Congressional Affairs Coordinator, Autism National Committee (jessica@jnba.net)
Bob Berlow, Co-chair, COPAA Government Relations Committee (govrelations@copaa.org)

Please don’t hesitate to SHARE THIS with others.

To sign-on you must email your name, the name of your organization or group, and your city, state, zip code, and email address to – jessica@jnba.net (Jessica Butler, Congressional Affairs Coordinator, Autism National Committee)

The Urgent Next Step in the Fight to Save the Lanterman Act

16 Mar

The Arc and United Cerebral Palsy of California have put out an urgent action alert for residents of California. And by urgent they mean now. Their is a meeting at 1pm that they want to impact (<5 hours from when this was published).

Dear Friends,

Our community’s overwhelming turnout in the Capitol and numerous calls and visits to legislators, asking them to save the Lanterman Act, paid off. The Legislature so far has rejected most of the developmental services service cuts that the Brown administration proposed.

But the fight continues. We need your advocacy again — this morning.

Here’s where we stand. The Legislature’s budget committees, with both Democrats and Republicans voting for us, reduced the size of the cut to community services for people with developmental disabilities by $386 million. But that leaves $147 million in cuts that have to come from someplace.

The administration wants the $147 million to come from purchase-of-service “standards,” or “best practices” as the Legislature has started calling them. Either way sound good, but what they really mean is that arbitrary limits and not IPPs and IFSPs would determine what services people with disabilities receive.

The Legislature is set to meet at 1 p.m. today to vote on the state budget and bills to cut spending to balance the budget. One of the bills, AB 98, would direct the administration (specially, the Department of Developmental Services) to develop “best practices” and recommend them to the Legislature by May 15. There are two calls I’m asking you to make before then help head off that threat — one to each of you two local state legislators, your state senator and assembly member.

If you don’t know who they are, go to http://capwiz.com/thearc/state/main/?state=CA&view=myofficials , enter your ZIP code, scroll down to “state senators” and “state representatives,” and click on their names.

If you already have talked to staff members in your legislators’ local or Capitol offices, call those staff members again. Otherwise, call their Capitol offices.

Here is what you might say to each of them

1. Ask to talk to someone about the development services budget.
2. Write down the staff member’s name.
3. Introduce yourself, give them you address, and tell them why you care. For example, if you’re the parent of someone with a developmental disability, say so.
4. Tell them that you are against Section 1 of Assembly Bill 98, the developmental services budget “trailer bill” (they’ll know what that means). That’s the section about “best practices.” Ask that the legislator try to get it removed from the bill.
5. Even more important, whether or not Section 1 stays in the bill, ask the legislator to make a statement when the bill comes up for discussion today. Ask that the legislator say, when the Department of Developmental Services presents its recommendations for “best practices to the Legislature on May 15, the Legislature should consider the community organizations’ alternatives for ways to make savings in the budget while doing less damage that the administration’s recommendations would do. The idea is serve notice now that the Legislature will consider our community’s recommendations equally with the administration’s.

I know this is complicated. I wish I could make it simpler. I think that, if you stick to the five things I’ve suggested, your legislators will get the message. God knows we’re been working hard enough here in Sacramento to get it to them since the Assembly Bill 98 came out yesterday.

If you want to read the bill for yourself, go to www.leginfo.ca.gov/pub/11-12/bill/asm/ab_0051-0100/ab_98_bill_20110314_amended_sen_v98.html . Section 1 starts on page 5.

Thank you for your advocacy.

Greg

Greg deGiere
Public Policy Director
The Arc and United Cerebral Palsy in California
1225 Eighth Street, Suite 350
Sacramento, CA 95814
916-552-6619, ext. 16
916-223-7319 (mobile)
916-441-3494 (fax)

Autism Science Foundation announces IMFAR stakeholder travel grant recipients

10 Mar

The Autism Science Foundation has announced the recipients of this year’s stakeholder travel grants for IMFAR.

The press release is below:

AUTISM SCIENCE FOUNDATION ANNOUNCES
IMFAR STAKEHOLDER TRAVEL GRANT RECIPIENTS

IMFAR Stakeholder Travel Awards will Support Parents, Individuals with Autism, Teachers & Students

(March 10, 2011—New York, NY)–The Autism Science Foundation, a not for profit organization dedicated to supporting and funding autism research, today announced the recipients of its IMFAR Stakeholder Travel grants. ASF will make 11 awards of up to $1000 to be used to cover expenses related to attending the International Meeting for Autism Research in San Diego in May 2011. After the conference, grant recipients will be expected to share what they’ve learned with families in their local communities and/or online.

This year’s recipients are:

Geraldine Bliss–Parent
Matthew Carey–Parent
Shannon Des Roches Rosa–Parent
Mark Fornefeld–Self Identified Individual with Autism
Abby Hare–Graduate Student
Erin Lopes–Parent
Molly McGrath–Self Identified Individual with Autism/MIT Media Lab
Brianna Miller–Special Ed Teacher, Newark Public Schools
Sharman Ober-Reynolds–Parent/Senior Research Coordinator, SARRC
Megan O’Boyle –Parent
Max Rolison–Undergraduate Student

IMFAR is an annual scientific meeting, convened each spring, to promote exchange and dissemination of the latest scientific findings in autism research and to stimulate research progress in understanding the nature, causes, and treatments for autism spectrum disorders. IMFAR is the annual meeting of the International Society for Autism Research (INSAR).

“We are thrilled to be able to give back directly to the autism community in a research-focused way”, said Alison Singer, President of the Autism Science Foundation. “We are confident that the award recipients will all do a great job of bringing critical new research information to their communities, improving the speed with which the latest data are shared with the broader autism community.”

The Autism Science Foundation is a 501(c)(3) public charity launched in 2009 whose mission is to support autism research by providing funding to those who conduct, facilitate, publicize and disseminate autism research. ASF also provides information about autism to the general public and serves to increase awareness of autism spectrum disorders and the needs of individuals and families affected by autism.

The International Society for Autism Research (INSAR) is a scientific and professional organization devoted to advancing knowledge about autism spectrum disorders. INSAR was created in 2001. The society runs the annual scientific meeting – the International Meeting for Autism Research (IMFAR) and publishes the research journal “Autism Research”.

Contact Info:

Julie Martin
Events and Media Manager
Autism Science Foundation
jmartin@autismsciencefoundation.org
419 Lafayette Street, 2nd floor
New York, NY 10003

The Arc Action Alert – Do You Want “Congregate Care”?

25 Feb

The Arc sends out periodic Action Alerts. I just got this one in my email inbox. Do you think the government should go back to segregated living and institutions for people with intellectual and developmental disabilities? Now is your chance to add your comments and be heard.

Do You Want “Congregate Care”?
Then now is the time to counter calls for institutions and other segregated settings

institution for people with intellectual and developmental disabilities. The Administration on Developmental Disabilities (ADD) has just extended the deadline for submitting testimony for its national listening sessions. And people who support institutions are wasting no time in letting ADD know what they want. In fact, VOR is calling on its membership to “Tell ADD to support Choice” in residential settings for people with intellectual and developmental disabilities.

Please take a minute to provide your comments to ADD and let them know that segregated, congregate living for people with disabilities should NOT be a choice. We know all too well that abuse, neglect and other forms of denigration are far more likely to occur in large congregate settings. Integrated, community based housing is the only policy the federal government should be supporting.

It’s critical that ADD hear from many people with intellectual and developmental disabilities or their family members. Please submit your comments before March 4 at:
http://www.envision2010.net/comment_submit.php

Thank you in advance for your advocacy.

Another Big Day in Sacramento – And the Fight Goes On

11 Feb

An action alert from The Arc of California and United Cerebral Palsy. Yesterday was one of the hearings on the proposed budget cuts for the disabled in California. Due to good advocacy, there was a big turnout.

The fight goes on. If you are in California and you haven’t called your representatives yet, do so.

Dear Friends,

We had another great turnout in the Capitol yesterday, even bigger than last week.

The members of the Senate subcommittee conducting the developmental services budget hearing – Senators Mark DeSaulnier, Elaine Alquist and Bill Emmerson — listened to us attentively. The hundreds of you who talked to them were, if anything, even more articulate and compelling than last week, and they heard you.

And everyone in the Capitol was aware of our presence. They could hardly overlook it when the security people had to close off admission to the 4th floor.

Neither the Senate nor the Assembly budget subcommittee took votes on Governor Brown’s proposed $1.1 billion cut in the budget for community services for people with developmental disabilities. (The governor’s proposal calls it a $533.5 million cut, and we’ve been estimating it at $750 million including lost federal funds, but the new Senate staff analysis put the total cut at more than $1.1 billion.)

So the fight goes on. The Senate and Assembly budget committees could start making real decisions as early as next week.

Here are two things you can do now:

1. If you haven’t called your own local state senator and assemblymember to protest the cuts, please call today.

The most important thing when you call is to speak from your heart. Tell them why you care and what the end of Lanterman Act services could mean to you and those you care for.

If you’re worried that they might think you’re being alarmist, you can quote the Senate budget subcommittee staff’s comments from yesterday’s hearing agenda. In dry government language, the staff member says the same thing we’ve been saying:

“Subcommittee staff believes that the overall [proposed budget cut] is not fully feasible…. Significant reductions have occurred within the developmental services system over the past several years. These reductions have included some eligibility changes, significant changes to services, increasing family cost-sharing, reducing rates, and related actions. As a result, reductions of the magnitude that are proposed are not achievable if the Lanterman Act is to be maintained.”

And again, if you don’t know who your local state senator and assemblymember are, click on http://capwiz.com/thearc/state/main/?state=CA&view=myofficials, enter your ZIP code, click on “Go,” scroll down to “My Elected Officials,” and click on “State Senators” and then again on “State Representatives.” Call their Sacramento offices unless you already know someone who works in one of their local offices. And be sure to get the name of the staff person you talk to, so you can call or email the same person in the future.

2. Forward this Action Alert to everyone you know who you can ask to make the calls and also join UCP-Arc Action E-List, our most important tool for mobilizing support at critical moments.

To join the list, click on http://capwiz.com/thearc/state/main/?state=CA&view=myofficials (the same place you go to find out who your senator and assemblymember are), scroll down a little to “California Legislative Action Center,” click on “Action E-List,” and fill in your contact information.

And thank you for your advocacy.

Greg

Greg deGiere
Public Policy Director
The Arc and United Cerebral Palsy in California

More on the Stark Threat to Our Community

9 Feb

Below is an action alert from The Arc and United Cerebral Palsy in California. There is another hearing to discuss budget cuts for services for the disabled in California. That meeting is tomorrow. Now is a good time to act. Call. If you can, attend the hearing.

If you don’t know who to call, the Arc and UCP make it easy to find out:

If you don’t know who your state senator and assembly member are, they probably don’t know who you are, either, and it’s time for you — and them — to find out. Go to: http://capwiz.com/thearc/state/main/?state=CA&view=myofficials , enter your ZIP code, click on “Go,” scroll down to “My Elected Officials,” and click on “State Senators” and then again on “State Representatives.”

This is local to California, but there are likely similar decisions being made in your country, your state. Find out how to act.

More on the Stark Threat to Our Community
Action Alert from
The Arc and United Cerebral Palsy in California

Dear Friends,

The stark threat to the existence of the Lanterman Act system of supports and services for people with developmental disabilities is becoming clearer.

I hope you’re planning on coming to Sacramento tomorrow (Thursday) to tell the Legislature that Governor Brown’s proposed cut to our system is just too big. And I hope that you plan to call your local state senator and assembly member today with the same message, if you haven’t called them yet.

If those are your plans, here’s some information that might help you decide what to say to them. If not, I hope this information will convince you to at least make the calls today.

Our friends at Keeping the Lanterman Promise have posted some simple figures showing examples of what the governor’s proposed $750 million cut would have to mean to real services. They helped me wrap my mind around how crushing the cuts would have to be to reach that total. Here they are: http://keepingthelantermanpromise.net/inform/governor-browns-2011-budget-proposal-what-every-family-member-needs-to-know

And just in case anyone thinks we’re just being alarmist, look at the Brown administration’s own proposed bill spelling out how they want to make a lot of these cuts: http://www.dds.ca.gov/Budget/Docs/201112_620RCPOSStandards.pdf

The first time you read it, you can skip the soothing words in the paragraph that begins “(a).” After you read on and see what the bill would really do, you can reach your own conclusion about whether the Lanterman Act would still exist in anything other than name.

When you get down to “(b),” you’ll see that the Brown administration wants the Legislature to commit itself to “standards” that limit “the type, scope, amount, duration, location, and intensity of services and support purchased by regional centers for consumers and their families.” The “standards” could even “prohibit the purchase of specified services” — whether the consumer needs them or not.

These arbitrary “standards” would turn the Lanterman Act on its head, taking the decision-making away from the people with disabilities, their families, and the rest of their IPP/IFSP teams.

So, if you can, please come to Sacramento tomorrow to tell the Senate budget subcommittee what you think of these cuts. We need to fill not just the room but the Capitol building, like we did for the Assembly hearing last week. The hearing starts at 9:30 a.m. or later in Room 4203. The Assembly budget subcommittee, which held last week’s hearing, may be voting on the cuts later in the morning across the hall in Room 4202.

And whether or not you can come to Sacramento, please call your local state senator and assembly member today. Tell them your address, why you care, and what you think about these cuts. Call their Sacramento offices unless you already know someone in one of their local offices. And whoever you talk to, save their names so you know who to call next time. Please believe me, there will be a next time.

If you don’t know who your state senator and assembly member are, they probably don’t know who you are, either, and it’s time for you — and them — to find out. Go to: http://capwiz.com/thearc/state/main/?state=CA&view=myofficials , enter your ZIP code, click on “Go,” scroll down to “My Elected Officials,” and click on “State Senators” and then again on “State Representatives.”

And finally, when you testify to the subcommittee or talk to your legislators’ staff, be sure to mention that you’re a registered voter — if you are. If you’re not, it’s time to register. Go to: http://www.sos.ca.gov/elections/elections_vr.htm

Thank you for your advocacy.

Greg

P.S. Your probably noticed a new banner at the top of this Action Alert. That’s because United Cerebral Palsy and The Arc have joined forces to strengthen our community’s voice in California public policy struggles. Just in time, don’t you think?

Greg deGiere
Public Policy Director
The Arc and United Cerebral Palsy in California
1225 Eighth Street, Suite 350
Sacramento, CA 95814
(916) 552-6619 x16

Arc of California action alert: call your state representative now

1 Feb

Budgets are tight in California, with a multi billion dollar deficit projected. The current plan is to cut developmental services budgets by $750 million dollars. Now is the time to call or, if you can, attend hearings in Sacramento.

If you can call, here are the instructions:

* Click on The Arc’s Legislative Action Center: http://capwiz.com/thearc/state/main/?state=CA&view=myofficials.
* Enter your ZIP code and click on “Go”
* Scroll down to “State Senators,” and click on it.
* Click on “contacts” and call your senator’s Sacramento office (unless you know someone who works in the senator’s district office).
* Do the same with “State Representatives.”

If you aren’t from California, my bet is your governments are facing tight budgets too. Now is a good time to find out where and how you can support your communities during these tough times.

Dear Friends,

Thank you sincerely to everyone planning to come to Sacramento this Thursday and again next Thursday, and to everyone who has phoned your local state senator and assemblymember.

For those who haven’t yet planned to come or haven’t called yet — the developmental disability community needs your advocacy now!

If you already know about the very real threat facing our community, please just scroll to the bottom of this Action Alert for the specifics about what you need to do to help fight it. If not, read on ….

Governor Brown’s proposed budget cuts would gut the Lanterman Act’s promise that people with developmental disabilities will get the services and supports they need to live full lives in the community.

If the cuts happen, you could lose all of your services. There is no way to know until after they pass, if they do. This is serious.

The Arc and other disability organizations are fighting in the Capitol to protect our community’s services. To limit the damage, we need a strong show of support from the community. That means you and the people you know throughout the state.

The threat is caused by the state’s massive budget shortfall, probably the worst since the Great Depression. To balance the budget, Governor Brown has proposed more than $12 billion in cuts and about the same amount in revenue increases by continuing some existing taxes by five years.

In developmental services, that would mean cuts to services of more than three quarters of a billion dollars — real, new cuts, over and above continuing the much smaller 2009 and 2010 cuts. The total cut this year would include the federal matching funds we would lose as a result of the state fund cuts.

It’s hard to grasp how much a cut that large would reduce the Lanterman Act services, especially because the governor hasn’t said exactly where the ax would fall. This is more than twice the disatrous cuts we suffered in 2009.

We do know that most of the cuts probably would come from imposing what are called statewide “service standards.”

“Service standards” sounds good, doesn’t it? But what it means is simply eliminating the IPP team’s ability to pick the services and supports that the person with the disability needs, the key promise of the Lanterman Act. The 2009 caps on respite care and Early Start are the most recent examples of “service standards.”

Under the Lanterman Act, IPP teams write plans to reflect the specific needs of individuals, but with the cuts being proposed this process would certainly be harmed dramatically.

Real life consequences to real life people throughout the state are the kinds of things you should communicate to the legislative committees in Sacramento and to your local state senator and assemblymember. Tell them the cut is just too big to bear!

What You Need to Do!

The Legislature has scheduled just two public hearings in the cuts before taking action. Here is when and where:

* 9:30 a.m. or later, this Thursday, February 3, Room 4202, State Capitol, Sacramento. This is the Assembly heating
* 9:30 a.m. or later, next February 10, Room 4203, State Capitol, Sacramento. This is the Senate hearing.

We need to fill the rooms with people who can briefly tell the legislators what elimination of services would mean to you and those you care for.

And whether or not you can come to Sacramento, please make two calls to your local state senator and assemblymember this week. When you call, get the name of the person you’re talking to, so you can cal him or her again next time. Think of this as the beginning of a relationship. Tell him or her why you care, and that Governor Brown’s proposed cut in developmental services is just too big.

If you already know someone who works for the senator or assemblymember, either in Sacramento or in your local area, call him or her. If not, please call their Sacramento offices. here’s How to get their numbers:

* Click on The Arc’s Legislative Action Center: http://capwiz.com/thearc/state/main/?state=CA&view=myofficials.
* Enter your ZIP code and click on “Go”
* Scroll down to “State Senators,” and click on it.
* Click on “contacts” and call your senator’s Sacramento office (unless you know someone who works in the senator’s district office).
* Do the same with “State Representatives.”

And I hope to see you in this week and next week.

Thank you for your advocacy.

Greg

P.S. Thanks, too, to everyone who forward my last Action Alert to others. Please forward this one to everyone you know too! We need a very strong show of support to reduce the size of these cuts.

Greg deGiere
Public Policy Director
The Arc of California
1225 – 8th Street, Suite 350
Sacramento, CA 95816
916-552-6619 x16 (office)
916-223-7319 (mobile)
916-441-3494 (fax)

More like you than not

25 Jan

Newsweek has a piece, Autism Finds Its Voice, which discusses a documentary about autistic adults, Tracy Thresher and Larry Bissonnette, and their travels and advocacy (which are combined for this film).

In the documentary Wretches & Jabberers, Tracy Thresher and his friend Larry Bissonnette, who is also autistic, travel from Vermont to Sri Lanka, Japan, and Finland to meet with other autistic adults. Both men grew up not speaking: Larry spent his childhood in institutions, while Tracy attended special-education classes where he passed his days doing puzzles. As adults they learned to type and acquired some verbal abilities. Today they are advocates for their condition, speaking (with the aid of their keyboards and assistants) at conferences about the myths and realities of autism. The goal of the tour, Tracy types in the film, is to “make a difference in the lives of people who can’t talk but are intelligent.”

http://c.brightcove.com/services/viewer/federated_f8/271557391

A short, related piece in Newsweek, And if Autism Were a Song, It Might Sound Like This, discusses the music used in the movie.

The music for Wretches & Jabberers was written by composer and musician J. Ralph, who scored the Academy Award–winning documentaries The Cove and Man on Wire. After watching the film, Ralph asked his musician friends to collaborate on the soundtrack. The catch was they couldn’t hear the songs first. Ralph wanted to capture the musicians discovering the music in the same way the subjects of the film discover language as they learn to type and communicate. Several of the songs borrow the phrases of the film’s subjects for their lyrics.

This piece ends with the positive note:

“I have friends that are on the spectrum, but for me this film is about basic human rights.” Including the right to be heard, even when the process is killingly hard.

I hope the film lives up to the message.

The tour so far for the movie is listed here, with more video clips here (which I’ll probably embed soon in a new post, but go look anyway).

Arc of California Action Alert: people needed to show support in Sacramento

25 Jan

This is a California local issue. At the same time, it is not. Budgets are tight all over in these tough economic times. My guess is that organizations quite near you are looking for people to help support actions to preserve funding for services for the developmentally disabled. The Arc has chapters all over the country. The U.K. has the National Autistic Society and other excellent organizations. Now is a time when they could use your help.

Greg deGiere of the Arc of California sent out the action alert today. The economic situation in California is poor, and Governor Brown has suggested large cuts in addition to those the Department of Developmental Services has already absorbed under Governor Schwarzenegger.

Now is a time when we should show support for developmental services in California. The Arc is calling for people to come to Sacramento on February 3 and February 10 for public hearings on the developmental services budget.

Dear Friends,

Our community is facing its most serious threat in many years.

Governor Brown’s proposed budget cuts would gut the Lanterman Act’s promise that people with developmental disabilities will get the services and supports they need to live full lives in the community.

If the cuts happen, you could lose all of your services. There is no way to know until after they pass, if they do. This is serious.

The Arc and other disability organizations are fighting in the Capitol to protect our community’s services. To limit the damage, we need a strong show of support from the community. That means you and the people you know throughout the state.

I’ll tell you more about the threat, but first, here’s what I’m asking you to do:

· Come to Sacramento on Thursday, February 3, and Thursday, February 10, the dates of the Legislature’s only public hearings on the developmental services budget. We need to fill the hearing rooms with people who are ready to tell the legislators what the real effect of the earlier cuts has been and what the likely categorical reductions and service eliminations would mean to them and the ones they love.

· Call your local state senator and assemblymember this week and give them the same message.

The threat is caused by the state’s massive budget shortfall, probably the worst since the Great Depression. To balance the budget, Governor Brown has proposed more than $12 billion in cuts and about the same amount in revenue increases by continuing some existing taxes by five years.

In developmental services, that would mean cuts to services of more than three quarters of a billion dollars — real, new cuts, over and above continuing the much smaller 2009 and 2010 cuts. The total cut this year would include the federal matching funds we would lose as a result of the state fund cuts.

It’s hard to grasp how much a cut that large would reduce the Lanterman Act services, especially because the governor hasn’t said exactly where the ax would fall. The state could eliminate all the regional centers’ operating budgets and still not cut that much.

We do know that most of the cuts probably would come from imposing what are called statewide “service standards.”

“Service standards” sounds good, doesn’t it? But what it means is simply eliminating the IPP team’s ability to pick the services and supports that the person with the disability needs, the key promise of the Lanterman Act. The 2009 caps on respite care and Early Start are the most recent examples of “service standards.”

Under the Lanterman Act, IPP teams write plans to reflect the specific needs of individuals, but with the cuts being proposed this process would certainly be harmed dramatically. Let the policymakers know how the services and supports benefit you and the real consequences to your life and the lives of your family members.

Real life consequences to real life people throughout the state are the kinds of things you should communicate to the legislative committees in Sacramento and to your local state senator and assemblymember. Tell them the cut is just too big to bear.

Here is the best information I have as of today on the committees’ public hearings:

· Assembly Budget Subcommittee on Health and Human Services, 9:30 a.m. or later, February 3, Room 4202, State Capitol, Sacramento.
· Senate Budget Subcommittee on Health and Human Services, 9:30 a.m. or later, February 10, Room 4203, State Capitol, Sacramento.

And here’s how to call your local state senator and assemblymember, if you don’t know who they or how to call them:

* Click on The Arc’s Legislative Action Center: http://capwiz.com/thearc/state/main/?state=CA&view=myofficials.
* Enter your ZIP code and click on “Go”
* Scroll down to “State Senators,” and click on it.
* Click on “contacts” and call your senator’s Sacramento office (unless you know someone who works in the senator’s district office).
* Do the same with “State Representatives.”

When you call, get the name of the person you’re talking to. Think of this as the beginning of a relationship. Tell him or her why you care, and that Governor Brown’s proposed cut in developmental services is just too big.

And I hope to see you in Sacramento next week and the week after.
Thank you for your advocacy.

Greg

P.S. Please forward this Action Alert to everyone you know. We need a very strong show of support this time.

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