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Joint Letter to CDC on Wandering

6 Apr

Below is a letter signed by a number of disability groups, including the Autistic Self Advocacy Network (ASAN) on the issue of the proposed ICD-9 code for wandering. These organizations oppose the addition of the code, for the reasons given below.

This letter was sent to the CDC’s National Center for Health Statistics on Friday, April 1st.

Dear Ms. Pickett:

We are writing as a coalition of organizations representing a wide variety of different constituents in the disabilities field. The constituencies that we collectively represent number in the hundreds of thousands from every stakeholder group in the disability field. We include organizations run by people with disabilities as well as those run by parents, other family members, professionals, providers and many others. Our coalition also includes groups representing a wide array of different kinds of disability categories, including developmental disabilities, mental health conditions, physical disabilities and sensory disabilities. We are writing to express our profound concern about the proposed ICD-9-CM code for wandering discussed at the last meeting of the ICD Coordination and Maintenance Committee on March 9th-10th.

While wandering behavior leading to injury and death represents an important and legitimate safety issue for the disability community, we are concerned that the proposal put forward by CDC’s National Center for Birth Defects and Developmental Disabilities (NCBDDD) is not rooted in high quality research and has significant potential unintended consequences for people with disabilities and family members. We encourage the National Center for Health Statistics to reject an ICD-9-CM coding for wandering behavior as ill-advised and inappropriate.

First, a code for wandering behavior could limit the self-determination rights of adults with disabilities. The wandering coding has no clear operational definition and thus no limits to its application. The proposal makes no distinction between wandering behavior that would qualify for the coding and a rational and willful effort by an individual with a disability to remove oneself from a dangerous or uncomfortable situation. For individuals with significant communication challenges, attempting to leave a situation may be one of the only ways of communicating abuse, a sensorily overwhelming situation or simple boredom. We are concerned that if this coding enters the ICD-9-CM such attempts at communication will be disregarded as medical symptoms.

Second, a code for wandering behavior could lead to serious unintended consequences in professional practice for schools and residential service-provision settings for adults with disabilities. Restraint and seclusion in schools and in residential service-provision settings is already a persistent problem. The application of this coding may result in increased restraint and seclusion as a way of preventing wandering behavior, supplanting required active support, person-centered planning and appropriate supervision. In addition, we are concerned that this coding may enable other forms of overly restrictive interventions and settings. For example, individuals with disabilities who are labeled with a wandering coding may be less likely to be included in the general education classroom, more likely to be placed in large group homes or institutions and more likely to experience chemical restraint. Each of these issues already represents a critical problem for people with intellectual and developmental disabilities that this coding may exacerbate. For example, while only 18% of adults on the autism spectrum receiving developmental disability services have a diagnosis of mental illness, 41% of such individuals are receiving psychotropic medications, suggesting a high incidence of chemical restraint.

Third, the proposed ICD-9-CM code for wandering behavior lacks research support and is not based on evidence or a controlled examination of the issues involved. No research exists to look at wandering as a medical rather than behavioral issue. The research which CDC relies on to make the case for this coding is weak. For example, one of the statistics that CDC cites (that 92% of families of children on the autism spectrum report at least one or more incidents of wandering) comes not from a high quality research study, but instead from an online poll on the website of an advocacy organization. This is not in line with the high standards for research and evidence that the CDC bases its other decision-making on.

While we respect the good intentions behind the creation of this coding, we firmly believe that there are other ways of accomplishing the positive objectives of this coding without placing people with disabilities and our families at risk of the same unintended consequences. Other methods of data collection around wandering can and are being pursued by both public and private funders. In addition, a wide variety of human services and educational approaches hold significant promise in addressing the issue of dangerous wandering behavior outside of a medical context. As a result, we strongly urge you to consider and reject the proposed ICD-9-CM coding for wandering behavior.

Regards,

Access Living
ADAPT
American Association of People with Disabilities
American Association on Intellectual and Developmental Disabilities
Autistic Self Advocacy Network (ASAN)
The Arc of the United States
Brooklyn Center for the Independence of the Disabled (BCID)
Center for Self-Determination
Coalition for Community Integration
Collaboration for the Promotion of Self-Determination
Council of Parent Attorneys and Advocates (COPAA)
Disability Rights Education and Defense Fund (DREDF)
Disabled in Action of Greater Syracuse
Disabled in Action of Metropolitan New York
Disabled Queers in Action
Disability Network of Michigan
Disabilities Network of New York City
Hearing Loss Association of America (HLAA)
Independent Living Center of the Hudson Valley
Independent Living Council of Wisconsin
Independent Living Coalition of Wisconsin
Little People of America (LPA)
Kansas ADAPT
Montana ADAPT
National Association of the Deaf (NAD)
National Association of State Directors of Developmental Disability Services (NASDDDS)
National Association of the Physically Handicapped
National Council on Independent Living (NCIL)
National Organization of Nurses with Disabilities
New York Association of Psychiatric Rehabilitation Services
Options for Independence, Inc.
Pineda Foundation for Youth
Self Advocates Becoming Empowered (SABE)
Silicon Valley Independent Living Center
Statewide Parent Advocacy Network of New Jersey (SPAN)
SKIL Resource Center of Kansas
TASH
Topeka Independent Living Center
United Spinal Association
Wisconsin Board for People with Developmental Disabilities

Autism and Wandering

6 Apr

One issue which has been getting much discussion lately is that of wandering. Elopement. Autistics (and others) who get up and leave the home, classroom, or other place and wander. Anecdotally, it is more common amongst autistics. It is one of the first behaviors I was told about after hearing a diagnosis for my kid. One the one hand it is dangerous. A person can get lost or get into traffic or another unsafe situation. On the other hand, wandering can be an attempt to escape an inappropriate or harmful setting. While I hate presenting topics as unresolved “on the one hand/on the other hand” situations, there is a time critical discussion going on: should a new diagnostic code be implemented (ICD-9 code) for wandering. So I am presenting two pieces today: one by ASAN and other groups presenting their arguments against the ICD-9 code, and one by the Autism Science Foundation and others calling for participation in an IAN survey and support for the ICD-9 code.

My view so far is this:

As a means to collect data on wandering, I doubt this will be of much use, especially in the short term. Unless the code is a means to some end (some supports to address the cause of wandering), I don’t think the code will be used by physicians. If autism itself gives us any experience, we will see a multi-year increase in wandering. A wandering “epidemic” if you will. However, and more importantly to me, without this code, will there be funding from insurance and other sources to provide those supports?

There is much discussion of how prevalent wandering is amongst autistics. I don’t know if that is really the point. If wandering “only” occurs in, say, 10% of the population, does that mean there is no need for the code and for, hopefully, improved supports? No. If wandering is a major problem, one which puts some people at great risk of harm or death, that is where the focus should lie.

As I said, I am still forming my views on this and I welcome a good discussion.

Loving Lampposts video clips

1 Apr

Loving Lampposts is a new documentary film by filmaker and autism parent Todd Drezner. Here’s a blurb from their website to give you an idea about the film:

What would you call a four year old who caresses all the lampposts in the park? Quirky? Unusual? Or sick?

Such labels are at the center of the debate about autism: is it a disease or a different way of being—or both? In Loving Lampposts, we witness this debate and meet the parents, doctors, therapists, and autistic people who are redefining autism at a moment when it’s better known than ever before. Motivated by his son’s diagnosis, filmmaker Todd Drezner explores the changing world of autism and learns the truth of the saying, “if you’ve met one autistic person, you’ve met one autistic person.”

I put it on my Netflix list (you can too: link) right after reading the review on The Thinking Person’s Guide to Autism and the interview with the director on Neurotribes. Netflix doesn’t carry it yet, but with luck I may have a copy soon. One can purchase a copy as well.

If you are interested in what Todd Drezner has to say, he has the first in a series of articles up on the Huffington Post: Learning to Embrace Autism.

For more on what the film is about, here are a series of video clips the produces have made available:

Opening sequence with director Todd Drezner introducing autism spectrum disorder through his son, Sam

Loving Lampposts Clip#1 from Cinema Libre Studio on Vimeo.

Understanding autism through “Rain Man” and as described by author of “Unstrange Minds” Roy Richard Grinker

Loving Lampposts Clip #2 from Cinema Libre Studio on Vimeo.

Sharisa Kochmeister, autistic adult with a genius level IQ, and her father, Jay – “I don’t have a disease. I have a disability that causes unease…”

Loving Lampposts Clip #3 from Cinema Libre Studio on Vimeo.

Mothers Kristina Chew and Nadine Antonelli initially hoping to find a “fix” for their autistic children

Loving Lampposts Clip #4 from Cinema Libre Studio on Vimeo.

Simon Baron-Cohen, Director of the Autism Research Centre, explains definitions of autism and Asperger’s

Loving Lampposts Clip #5 from Cinema Libre Studio on Vimeo.

About the anti-childhood vaccination movement featuring actress and mother, Jenny McCarthy

Loving Lampposts Clip #6 from Cinema Libre Studio on Vimeo.

Blogger, mother, and activist Kristina Chew shares the joy of watching her son ride a bike

Loving Lampposts Clip #7 from Cinema Libre Studio on Vimeo.

Autistic adult, Dora Raymaker, using a computer to talk, explains how autism affects her ability to communicate

Loving Lampposts Clip #8 from Cinema Libre Studio on Vimeo.

Dr. Paul Offit discusses his involvement in the vaccine industry and the MMR vaccination

Loving Lampposts Clip #9 from Cinema Libre Studio on Vimeo.

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

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