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

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

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

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

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

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

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

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

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.

 

Accessing autism services after age 21

A parent commented to the Easter Seals autism blog last week — she was asking for help for her son. He is an adult with autism, and he has aggressive tendencies.

The needs for services and supports for adults with autism is a growing crisis. Entitlement services typically end at age 21. The parent who commented has a son who is 22 years old, and accessing appropriate service and supports becomes increasingly more challenging after age 21.

Maybe there is hope now with the new administration. Changes in the White House mean there are also changes on the disability section of the White House Web site. The site now details the new administration’s commitment to families with autism.

President Obama and Vice President Biden are committed to supporting Americans with Autism Spectrum Disorders (“ASD”), their families, and their communities.

From there it lists the specifics, including

President Obama and Vice President Biden support improving life-long services for people with ASD for treatments, interventions and services for both children and adults with ASD.

In my work with children and adults with autism, I have found that parents of individuals with autism are often the most aware of useful services and supports. I encourage parents and caregivers to contact local support groups and engage in dialogue with other parents who may have been in a similar situation and found a solution. The Autism Society of America has a chapter locator which may be a good place to start.

One last thing — parents who have their children with autism still living with them as adults need to know that individuals with autism can learn to communicate effectively and do not have to resort to aggression towards themselves and others. Parents awaiting residential placement for their adult children can sometimes access behavioral health services to assist with their ability to communicate and reduce aggression. A brief description of Functional Communication Training might help. It is a shame that accessing services has been such a challenge for adults with autism. Here’s hoping things really do change.

 

A special home for a special son with autism

Yesterday’s Chicago Tribune featured a story about a house that was rehabbed especially for a young adult with autism.

Larry and Beth Markin have a 22-year-old son, Eric, who is autistic. Two years ago, because of his aggressive behavior and the problems involved in caring for him, Eric was declared a crisis case by the state. The Markins knew he could no longer live with them in their Buffalo Grove home. But neither of their options was acceptable in their eyes.

“One was to drop him off at an institution,” says Larry, who points out that that would have meant signing away his parental rights. “The state would take him and they’d spend $150,000 or $160,000 [a year] to manage him in a state institution. My other choice … was to take whatever money [government programs] would give me, about $55,000, and I’d have to house him with six other people” in a group home. Neither setting would be conducive to Eric’s well-being.

And so, the Markins bought Eric’s grandparent’s home — a place Eric had visited all his life — and hired a contractor to convert it into a home that takes Eric’s behavior and special needs into account. The house will also accommodate a second person with special needs plus a caretaker provided by an agency.

Attractive, accessible housing is essential for children and adults with disabilities as they go about their everyday lives. Parents who are thinking of retrofitting houses for their children with special needs will find help and advice at the Easy Access Housing for Easier Living Program on our website.

Easter Seals teamed up with the CENTURY 21 Real Estate Corporation to establish the Easy Access Housing for Easier Living Program — it provides homeowners with helpful educational brochures, an expert panel with additional resources and easy-to-implement tips for making an accessible home a reality.

CENTURY 21 has displayed unwavering commitment and dedication to Easter Seals for nearly three decades. Throughout the years, the CENTURY 21 System’s efforts have raised more than $91 million for Easter Seals. To see how Easter Seals and CENTURY 21 System’s Easy Access Housing for Easier Living Program might work for you, Take an Accessible Home Virtual Tour – there’s no place like home.