Ask Congress to improve services for people living with autism

by Beth Finke

Right now, lawmakers in Washington are working on critical autism legislation. Who better than us to help them understand how vital this issue is? Congress votes on autism legislation in early March, and our online form makes it easy to send an email to your representative and senators. Tell them that in order to help the children and adults living with autism live better lives, autism legislation must include:

• Increased research funding for autism intervention and services.
• Expansion of health insurance to cover vital autism-related services.
• Establishment of a National Autism Family Resource and Information Center, to provide families with accurate, trustworthy information about intervention and other services.

Send an email this weekend! Together, we can improve services for children and adults living with autism.

What can we do? How Easter Seals North Texas responded to budget cut threat

by Jennifer Friesen

Easter Seals North Texas has an Autism Treatment Program (ATP) that is primarily funded through a $1.25 million grant contract with the Texas Department of Assistive and Rehabilitative Services (DARS).

In 2008, we, along with three other service providers in Texas, received the funding to provide applied behavioral analysis (ABA) services to children with Autism Spectrum Disorders (ASD). The funding was supposed to continue through August 2009, but on February 10 our affiliate received a phone call from DARS stating that Governor Perry had asked all state departments to cut at least 2.5% of the budget for the current fiscal year. We were told that the ABA funding for autism was potentially going to be cut entirely, effective March 31, 2009 — five months prior to the anticipated end date.

We knew that if this cut was approved by the Texas Senate Finance Committee, it could have potentially devastating results — not just to our budget and staff, but more importantly to our clients.

So when we got this news, our team took immediate action. We contacted staff at Easter Seals Headquarters, CEOs of the other Easter Seals Affiliates in Texas, our local Autism Society of America chapter, and our contacts at the University of North Texas (UNT)
— we collaborate with UNT for our Autism Treatment Program. Our team also initiated contact with the other three service providers that would be affected by this cut.

When Easter Seals North Texas management team members informed the staff, their first question was, “what can we do?” When staff informed our clients’ parents, their first question was also, “what can we do?”

Our team organized a letter-writing campaign. We provided contact information for the members on the Texas Senate Finance Committee and helped letter-writers send their messages to each committee member. Our families wrote dozens of personal, heartfelt letters to members of the Texas Senate Finance Committee.

Additionally, I travelled with Monica Prather, ESNT President and CEO, over to Austin. Five families came along with us — two families brought their children who were receiving services in Autism Therapy Programs and one family brought the older sibling of a child receiving services. Our intent was to provide testimony during the committee meeting on the importance of the program and the negative impact a five-month break from services would have on the clients.

Apparently, it worked! I’m happy to report that the funding for Autism Therapy Services has been maintained. As one of our family members was providing testimony, Senator Ogden, Chairman of the Senate Finance Committee, announced that the funding was NOT going to be cut.

From this experience, we realize how important collaboration and advocacy are for programs, particularly those supported by state funding. We are waiting to hear the final decisions of the budgetary cuts, but we are confident that our grassroots efforts have paid off.

I am so proud to be surrounded by such a talented, hardworking and enthusiastic team — from the families we serve to the staff at Easter Seals HQ, to our management team, to the therapy providers, to the support team. Each played an integral part in maintaining the funding for this program. I’m humbled to be a part of an organization that truly does believe in the purpose of bringing positive changes to the lives of people with disabilities and their families!

Read Jennifer Friesen’s biography.

The stimulus plan: what’s in it for people with autism?

by Beth Finke

Here’s an understatement for you: that stimulus package President Obama signed into law last week is huge. It’s a bit daunting, too. To help sort through all the changes, the Disability Policy Collaboration (The Arc of the United States, combined with United Cerebral Palsy) lists the amount of increased spending disability specific programs will receive from the time the bill is enacted through 2010. The list highlights different topics — health, unemployment insurance, housing, etc. Here are some of the changes I think could especially affect people with autism and other disabilities:

* NIH Biomedical Research: $10 billion for increased research.

EDUCATION

* Special Education: $11.3 billion for the IDEA State Grant Program and $500 million for the IDEA Part C Early Intervention Program. $400 million for the pre-school program.

SOCIAL SECURITY

* SSI: A one-time emergency payment of $250 to people who receive Supplemental Security Income (SSI), Social Security, disabled veterans, and other selected benefits. SSA Disability Backlog and Claims: $500 million to help the Social Security Administration reduce the processing time for claims and appeals decisions.
* SSA Modernization: $500 million to replace the antiquated National Computer Center.

Employment

*Vocational Rehabilitation: $540 million for VR State Grant.

For more information go to the DPC website.

Autism, adulthood … and love

by Patricia Wright

Autism, adulthood, and love. Those are three words I rarely hear spoken together in my work providing service and support to individuals with autism. So it was great to read a story called They’re Autistic — and They’re in Love in this month’s Glamour Magazine. The article shows how two young adults can work together to compensate for their challenges, celebrate their differences and emerge into a high quality life — including a loving relationship, employment and living arrangements of their choosing.

Contrary to stereotype — the Rain Man-esque loner who’d rather count toothpicks than make friends — adult autistics often know what they’re missing out on and hope to find love, like anyone else. Since hanging in a crowded bar or going on a blind date can be terrifying, many connect through social-networking websites. Still, successful relationships aren’t very common, especially relationships in which both partners have autism.

Lindsey and Dave have experienced their fair share of heartache: at school, among so-called friends, in their search for partners. Yet both have also summoned the courage to take a risk, perhaps the biggest risk of their lives, for each other. Theirs is a still-unfolding tale — an unconventional story about unconditional love.

Autism is a lifelong disability. When a person is given proper supports, though, autism does not have to diminish a person’s capacity to live, learn, work and … love.

Surfing and autism

by Patricia Wright

It must be the weather … living here in Chicago in the dead of winter makes me want to talk about warm weather sports! Last year at about this time, we posted information about Surfer’s Healing, and now I just saw a great video on the Ocean Psychology blog about surfing and individuals with autism.

From that blog post, you can watch a CBS interview — professional surfer Israel Paskowitz’s son Isaiah has autism, and Israel gave a great interview about his son’s experience in the water. Israel was raised in a surfing family, and his childhood experiences were captured in the film Surfwise. When Isaiah was diagnosed with autism, there were questions about whether the surfing legacy would continue in the next generation.

Thanks to programs like Surfers Healing, Isaiah and others with autism are able to experience the thrill that surfing provides!

“What’s wrong with you?” … how people with autism answered this question

by Beth Finke

A friend of mine who has a son with Asperger’s syndrome sent me a link to a story in the journal Psychotherapy and Psychosomatics. The story was called What Can We Learn about Autism from Autistic Persons? and described a study that analyzed 16 autobiographical writings and conducted five interviews with people who have autism.

The most striking observations were that all of them pointed out that unusual perceptions and information processing, as well as impairments in emotional regulation, were the core symptoms of autism, whereas the current classifications do not mention them

If you ask me, the study didn’t interview enough people. Only five interviews? Still, if you’re curious and want to read it for yourself, the entire report is available online through a Pay-per-View service.

The friend who sent me this link in the first place also read a review of the study in Science Daily. That review was called “What Happens When We Ask Autistic Persons What is Wrong With Them?” and my friend told me she was a bit offended by that title. I don’t blame her! As she says, “It’s like saying, ‘you’re defective, tell me what is defective about you.’ “

Autism bill likely to pass in Wisconsin

by Bob Glowacki

I’m so excited to share news from the great state of Wisconsin! We have a governor and legislature that will vote to cover autism through health insurance — it’s one of the first action items of the new legislature. The passage of this bill means that the current waiting list for autism treatment can be cut by one third. That would provide more kids access to the services they deserve — sooner.

I was able to meet with staff from the speaker of the assembly’s office, and the one thing that struck me from that visit was his view that this could have happened earlier if the autism community had been unified. In the last session, various professional, therapeutic and parent groups split. This caused confusion among the legislators. They were not sure. Who should they believe? What was the best course of action? As a result, the bill failed the last time it came up.

To me that was an important reminder. We need to speak with a unified voice that educates elected officials on the needs of families living with autism. We also need to realize how vital it is that we find ways to bridge gaps in communication between groups — and find common ground. We all have a special obligation to the children of our state, and Governor Doyle’s proposal will help provide the care and support children living with autism need and deserve!

Thanks for saving our SCHIP

by Beth Finke

On February 4, 2009, the reauthorization of the State Children’s Health Insurance Program (SCHIP) was signed into law by President Barack Obama. Your advocacy and on-going support now make health insurance coverage possible for 11 million uninsured children from low-income working families, including children with autism and other disabilities.

SCHIP was a top legislative priority here at Easter Seals during the two years the legistlation was debated in the House and the Senate. Easter Seals advocates sent over 6,000 emails and faxes to Congress, and SCHIP reauthorization was the message that over 300 clients, staff and volunteers took to their members of Congress for Capitol Hill Day, in October of 2007.

Keeping this program available and adequately funded has taken on a new importance in recent months — one million children enrolled in Medicaid and SCHIP in the 12 months ending October 2008 as a result of lost parental employment. The difficult economic conditions only make this program all the more important to struggling families and communities. Thank you for all you did to help get it signed!

Autism in Obama’s stimulus plan

by Beth Finke

Wondering how the proposed stimulus plan might affect your child with autism? An article in last week’s New York Times called Stimulus Plan Would Provide Flood of Aid to Education says that some of the money would go towards special education for children with autism and other disabilities. The story reported that President Obama’s Stimulus Plan allocates $150 billion to new federal spending on education, with $17 billion of that going specifically towards special education.

The bill would increase 2009 fiscal year spending on Title I, a program of specialized classroom efforts to help educate poor children, to $20 billion from about $14.5 billion, and raise spending on education for disabled children to $17 billion from $11 billion.

Those increases respond to longtime demands by teachers unions, school boards and others that Washington fully finance the mandates laid out for states and districts in the Bush-era No Child Left Behind law, and in the main federal law regulating special education.

An AP story called Education chief: Schools crucial to recovery quotes Education Secretary Arne Duncan saying that in order to recover and succeed, we need to invest several billion dollars in education.

Money for education makes up about one-sixth of the $819 billion stimulus measure approved by the House.

The measure would pump an extra $26 billion into two long-term programs — No Child Left Behind and the Individuals with Disabilities Education Act, an increase that critics say will be impossible to roll back when the economy improves.

Duncan said the money would be “righting a huge, historic wrong,” because Congress has never spent what it promised for the programs.

“There is going to be this huge outpouring of joy because this has been a desperately unfunded mandate for far too long,” he said.

ARTHUR needs a new friend

by Beth Finke

Calling all ARTHUR fans! CVS Caremark All Kids Can, a program dedicated to making life easier for kids with disabilities, and ARTHUR, the award-winning PBS KIDS GO! television series, are teaming up to announce the Arthur/All Kids Can Character Search!

From February 1 to March 31, 2009, kids 6 to 12 years old can draw their character and describe what makes the character special. The character should be one who can show that having a unique ability, character trait, or disability might make life a little bit different, but not any less fun.

One grand-prize finalist, along with his or her character, will be featured in a live-action segment on an ARTHUR show. The finalist will also receive a visit from ARTHUR creator and author Marc Brown at the child’s school, local library, or PBS station. Nine additional finalists will receive CVS gift cards and ARTHUR merchandise.

The Arthur/All Kids Can Character Search is designed to educate children about the importance of inclusion and how children of all abilities can play together and learn from each other. The search is made possible by WGBH Boston and CVS Caremark All Kids Can.

Created by the CVS Caremark Charitable Trust, All Kids Can is a five-year, $25 million commitment to making life easier for children with autism and other disabilities. Through this signature program, CVS Caremark helps nonprofit organizations like Easter Seals raise awareness in schools and in local communities about the importance of inclusion. In 2007, $350,000 in All Kids Can Fund grants went to support Easter Seals affiliates across the country. Last May, CVS Caremark Charitable Trust awarded another $350,000 in grants to Easter Seals’ autism programs. This means the CVS Trust has now donated a total of $1 million to support Easter Seals’ autism services nationwide.

For more information and to download an entry form, go to pbskidsgo.org/arthur/allkidscan.

Good luck!

ARTHUR is produced by WGBH Boston and Cookie Jar Entertainment, Inc. ©2009 WGBH. Underlying TM/© Marc Brown. All Kids Can is a registered trademark of CVS Pharmacy, Inc. All other trademarks are the property of their respective owners. Used with permission.