Accessing autism services after age 21

by Patricia Wright

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

by Beth Finke

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.

Horses and monkeys out, autism assistance dogs in?

by Beth Finke

The New York Times featured an article about service animals in their Sunday Magazine on January 4. After the article was published, the writer (Rebecca Skloot) received documents that were leaked from the Department of Justice (DOJ). The leaked documents outlined some changes the DOJ is proposing to redefine service animals — all part of a major overhaul of the Americans with Disabilities Act (ADA). Skloot posted the leaked documents on her Culture Dish blog — the documents define a service animal as

any dog that is individually trained to do work or perform tasks for the benefit of an individual with a disability, including a physical, sensory, psychiatric, intellectual, or other mental disability. Other species of animals, whether wild or domestic, trained or untrained, cannot be service animals.

While these documents limit the sort of animal a person with a disability can use for assistance (only dogs), they expand the sort of disability that would qualify.

The Justice Department’s rulings have been sent to the White House’s Office of Management and Budget (OMB) for final approval. Word has it, though, that the controversial language excluding all animals but dogs was removed before the document went to the OMB. Guess we’ll all just have to stay tuned for the final verdict.

Change in the autism blog world, too

by Beth Finke

With so many other things in the country changing these days, I guess it should be no surprise to hear of changes in the autism blog world, too.

Last November, Change.org advertised a part-time blogger position to manage its autism portal. Important note here: Change.org has no relation to the Obama-Biden transition team or the website Change.gov. In fact, Change.org was talking about change even before the Obama campaign coined the word.

Change.org is a social entrepreneurship venture based in San Francisco, CA. The company was founded by Ben Rattray in the summer of 2005, and with the support of a friend from Stanford, Mark Dimas, and a founding team of Darren Haas, Rajiv Gupta, and Adam Cheyer, Change.org launched the first version of its site in 2007.

The Change.org ad for the new blogger ran like this:

Previous blogging experience is a plus but not required; we’re most interested in someone with passion for autism activism, excellent writing skills, and the drive to lead an online community of like-minded people working for change.

A blog called Left Brain/Right Brain – Autism News and Opinion reported that Change.org’s ad worked well:

I doubt very much if Change.org were quite prepared for the utter deluge of applications that hit them. I have it on good authority that applications ran into the thousands and has been by far the biggest launch Change.org have held.

On January 1, Change.org announced who they had hired: Kristina Chew and Dora Raymaker.

Kristina is a Classics professor in Jersey City, New Jersey, a blogger (formerly at Autism Vox), a translator (of Virgil), and an advocate every day for her son, Charlie.

Dora is committed to improving quality of life for individuals on the autistic spectrum–including herself!

Though I am not yet familiar with Dora Raymaker, I have been following — and admiring — Kristina Chew’s Autism Vox blog ever since we started our autism blog here at Easter Seals. Now I’ll be adding another blog to my list — I send Kristina Chew all good wishes at her new post on Change.org.

Teaching kids with autism the art of conversation

by Beth Finke

A National Public Radio story I heard the other day talked about a program at Baltimore’s Kennedy Krieger Institute that teaches social skills to kids with autism.

For children like Alex with autism, social interactions are a struggle. But Freedman is part of a team of researchers at Baltimore’s Kennedy Krieger Institute that has developed a course to help these kids improve their social skills. The program is called Building Up Development of Socialization, or BUDS.

Alex says he is doing better than he used to since starting the program several months ago.

“I had a perfect week last week,” he tells Freedman. “I was never going into the red zone.” That refers to a number of behaviors that get Alex in trouble.

Alex and several other children with mild autism have been meeting every week with Freedman and autism specialist Elizabeth Stripling. The idea is to teach the social skills that most kids pick up without even thinking about it.

The story follows Alex and another student, Joseph, as they go on field trips and learn to talk and listen to each other. What I liked best about the piece is how it emphasized that when it comes to kids with autism, it’s all about coaching and practice, not just rules.

“One of the problems that kids with autism can run into is that when they’re taught very rigid rules, they only stick to those rules,” Freedman explains. “So we try to help them understand some nuances within interaction.”

If you missed the story, you can hear it online. Check it out!

Help kids with autism and other disabilities get health care coverage

by Katy Beh Neas

Wow — it’s busy in Washington these days. The House and Senate are preparing legislation to extend the State Children’s Health Insurance Program (SCHIP) and hope to have a final bill to present to President Obama this month.

SCHIP is a program that provides health insurance to children living in families that make less than $45,000 for a family of four. Easter Seals is committed to helping all families find health insurance, and it seems to us that shoring up the SCHIP program is an outstanding place to start.

If you want to tell your Senator and Representative to vote for the SCHIP bill, go to the Easter Seals Legislative Action Center to learn more about SCHIP and add your voice so that millions more children — including those with autism and other disabilities — can get the health care coverage they need.

If not now, when? If not us, who?

by Jim Leiker

I started my morning last Wednesday with a visit to KMAJ-AM radio in Topeka. Julie Smrha (Easter Seals Capper Foundation Marketing Coordinator and Marketing Partner) joined me to talk with radio host Jim Cates about the key findings of the Easter Seals Living with Autism Study. After that we spent another 40 minutes on the Topeka Talks with Deb Goodrich radio show.

That evening, we presented the key findings of the Easter Seals Living with Autism Study to more than 50 parents, educators, state legislators, Kansas Autism Task Force Members and interested community members at Easter Seals Capper Foundation in Topeka, Kansas.

This was the first of many Easter Seals Living with Autism Study community forums planned across the country, and our experience tells us there is great interest in the findings — a mother of a child with autism who coordinates an autism support group in western Kansas (Hays) drove about three hours to attend this forum. She told me it was important to her to know about this study and network with others attending. As I shared the study findings, individuals in attendance frequently nodded their heads in agreement. I asked if the findings fit their experiences, and they confirmed that they did indeed.

Margi Colston from the Autism Society of America joined us and shared her personal story of her son’s life with autism and the glaring need for supports and services. She also spoke about meeting with the Obama Transition Team along with Easter Seals and other national disability organizations. Bill Robinson, President of Autism Society of the Heartland shared some of the challenges his grandchild living with autism faces as well as his vision of the advocacy and family support efforts of this Kansas City-based group.

MassMutual SpecialCare planners Peter Dawson and Scott Hepler addressed parents’ concerns reported in the study and shared information about the tools and professional guidance available to plan for the future for children, adults and families with special needs.

I took the podium again after that and provided an autism advocacy update, including the Kansas Autism Task Force recommendations to the Kansas Legislature. Mike Wasmer, Founder of the Kansas Coalition for Autism Legislation (KCAL), introduced a powerful video that has been sent to each member of the Kansas Legislature. The video urges legislators to vote YES for S.B. 398, the Accessing Autism Services Bill. Named after the Wasmer’s 9-year-old daughter, “Kates Law” would require insurance carriers to cover the diagnosis and treatment for autism spectrum disorders in Kansas.

Debby O’Neill, Vice President of Programs and Services at Easter Seals Capper Foundation, was next. She shared information about the range of supports and services we provide for individuals with autism and their families. Debbie also provided copies of our Autism Resource Directory, featuring national, regional, state-wide and area county resources.

Everyone attending our Community Forum appeared to be energized by the presentations, interaction and data. Many expressed interest in becoming more engaged and involved — they want to build greater awareness, advocate for changes in attitudes and policies, and ensure that appropriate services are available and accessible. In this new year with new challenges and new opportunities, we all want this call to action for change from this study to result in individuals with autism to have the opportunity to live meaningful, purposeful lives.

If not now, when? If not us, who? Let’s make it happen and have a truly happy new year!

Read Jim Leiker’s biography.

Another “Extreme Makeover” for Easter Seals

by Beth Finke

Remember our blog post last March about the Extreme Home Makeover show? Back then, actress Marlee Matlin had appeared on Extreme Makeover: Home Edition to present a $50,000 college scholarship to Stefan Vardon. Stefan’s parents are both deaf and his younger brother has autism. Matlin is an amazing advocate for people with disabilities and is an Easter Seals Honorary Board Member.

This weekend another member of our Easter Seals family will be featured on an Extreme Makeover: Home Edition episode. Eight-year-old Jake Grys has brittle bone disease and receives services at Easter Seals Peoria-Bloomington. One of Jake’s therapists at Easter Seals is Angie DeLost. Angie nominated the Grys family, and on October 28, 2008 they were told their dream of a lifetime was coming true. They were getting a new home.

After a week long vacation at Disney World, the family came back to Illinois to see their brand new home. You can hear the family’s story and view their new place this Sunday, January 11 on ABC TV. Extreme Makeover: Home Edition airs at 7:00 p.m., Central Time.

And this just in: our 2005 Easter Seals national adult representative, Mary Ann Riojas, has just been chosen to receive a brand new home, too!You can visit the Extreme Makeover: Home Edition site to find out more about Mary Ann Riojas and her family,
and while you’re there you can go ahead and sign the guest book, too.

We don’t know exactly when the Riojas’ story will air – they are on their vacation this very moment and demolition of their old house is underway.

Extreme Home Makeover improves the lives of deserving families across the country through the generosity of thousands of volunteers. All materials and labor are donated for every house that is built. Easter Seals has long known the power of its volunteers. Watching this show reinforces in a meaningful way the lesson that Easter Seals volunteers have demonstrated for years – together, we can accomplish great things.

Special ed advocates tout Living with Autism Study

by Beth Finke

The first post published on the Special Education Advocates For Learning Disabilities blog this year is about our Easter Seals Living with Autism Study.

Having a child with autism can be a huge financial strain, with 52 percent of parents saying the family’s finances are drained. Three quarters of parents of children with autism worry that their child won’t ever get a job or won’t have enough money to get by after the parents die.

These sad numbers come from a new survey of 1,652 parents of children with autism up to age 30, as well as 917 parents with typically developing children. The survey was conducted by Easter Seals.

Easter Seals plans to use these findings to raise awareness of and advocate for the life-long services families living with autism desperately need.

Easter Seals will be holding workshops around the country at which parents can learn how to make that happen. It’s time for those parents to hear that they can dream those dreams, too.

Stay tuned for more information about our upcoming community forums.

One thing Blagojevich got right

by Beth Finke

While Roland Burris spends the week trying to get accepted into the U.S. Senate, the Illinois governor who picked him remains on bond after being arrested on corruption charges. Illinois legislators are working on Rod Blagojevich’s impeachment. President-elect Barack Obama and other politicians have urged him to step down.

Somehow, in the middle of all this, Governor Blagojevich managed to do something right. A press release on December 12 announced that he had signed “Brianna’s Law” (Senate Bill 934) into law, requiring insurers to cover autism treatment.

Families of children with autism have a right to access the treatment their children need and today that has finally become a reality in Illinois. I have continued to fight for this cause and I am pleased to sign this bill into law today.

The bill mandates insurance companies provide “individuals under 21 years of age coverage for autism spectrum disorders to the extent that the diagnosis and treatment of autism spectrum disorders [who] are not already covered by the policy or plan.”

Here’s an understatement: it’s been a busy month for Illinois Governor Rod Blagojevich. In the midst of it all, somehow he managed to sign a bill that could better the lives of children with autism and their families. I sure hope it sticks.