Sibshops help brothers and sisters with autism

by Bob Glowacki

You might remember the post I published last February about Sibshops and how they support families with autism.

One of the new programs we, at Easter Seals Southeast Wisconsin, are offering in the Milwaukee area is called “Sibshops.” Sibshops were developed by the Sibling Support Project in Seattle and are used throughout the country. The workshops recognize the many contributions made by brothers and sisters of kids with special needs.

We just received surveys back after one of our latest Sibshops. This particular session was dominated by siblings who had brothers with Autism. The Sibshop had very positive ratings. One response from the survey came from a 10 year old girl who attended our Sibshop, and it especially struck a chord with me.

Question: Is there something you want to know that we could learn during a Sibshop?

“Why our brothers have Autism?”

Her response to our survey question reminds me again of how important our services are for families living with Autism. Families have to live with that question “why” everyday.
Unfortunately, we don’t have an answer. We do provide services that can help, but we can’t always answer the “why.” Some of that question begs the eternal question men and women have: why do bad things happen to good people? Or why does any malady strike an innocent child?

I don’t have answers to those questions; I only hope our services can help. And I hope we can create a network and a community that respects the challenges families who have children with Autism or any disability face. And that our community provides the love and support our families need. We must remember these boys are our brothers. Their sisters are our sisters, and they need us, too. A Sibshop is one avenue we can take to make a difference.

Sen. Hillary Clinton’s keynote mentions autism

by Beth Finke

Patricia Wright’s post yesterday talked about how heartened she is “that the needs of people with autism and their families have taken a place on the candidates’ agendas.” If I didn’t know better, I might have thought Patricia had previewed last night’s keynote speech from the Democratic national Convention!

In her speech last night, Sen. Hillary Clinton (D – NY) referred to a woman with two adopted children who have autism as an example of how America’s health care system needs to change. The mother, Mary Worden-Fielder, cannot get health insurance for these two children.

You can read the transcript of Sen. Clinton’s speech Here, and if you link to Hillary’s Bloggers you’ll find out that Mary Worden-Fielder has adopted more than two children.

Worden-Fielder has four adopted children and one is foster daughter she hopes to adopt. Two have autism and one has fetal-alcohol syndrome.

Katy Beh Neas, Vice President of Government Relations here at Easter Seals, knew last year that autism would be an issue in this presidential election. She quoted Easter Seals President and CEO Jim Williams in her Autism an issue in presidential campaign post last November, and I think Jim Williams said it best:

It’s not enough to support research aimed at finding the cause and cure for Autism Spectrum Disorders. We must also increase the availability of services to help meet the needs of people with autism today.

McCain and Obama on autism

by Patricia Wright

It seems ages ago that I posted a blog about the Democratic primaries and Hillary Clinton and Barack Obama’s ties to Illinois, the state where I live. Now the Democratic and Republican conventions are finally starting, and suddenly, after a seemingly endless primary season, the presidential election is right around the corner.

To help with your decision, the Autism Society of America (ASA) invited the presidential candidates to submit statements about their views on autism. Both major candidates responded, and ASA posted those statements on their Web site.

An excerpt from John McCain’s response emphasizes the economic and emotional cost of autism:

More than one in 150 children born today will be diagnosed with autism. It now affects almost 1.5 million Americans, and costs the U.S. $90 billion each year. Autism has a significant impact on families — bankruptcy and divorce rates of parents of children with autism are well above the national averages. Worse, there is no quantifiable way of determining how many future doctors, lawyers, teachers, or scientists autism has taken from society. Autism is a national crisis and the federal government must respond accordingly.

Barack Obama’s statement focuses on ending disability discrimination. After a paragraph discussing research and education, Obama wrote:

I also support the adoption of a comprehensive plan designed to provide lifelong supports and resources to Americans with ASD and other disabilities. This plan would ensure that their needs are met by:

• Reclaiming America’s global leadership on disability issues by becoming a signatory to — and having the Senate ratify — the UN Convention on the Rights of Persons with Disabilities;
• Providing Americans with disabilities with the educational opportunities they need to succeed;
• Ending discrimination and promoting equal opportunity; and
• Increasing the employment rate of workers with disabilities, and
  Supporting independent, community-based living for Americans with disabilities.

Issues shape and define campaigns, and it’s heartening that the needs of people with autism and their families have taken a place on the candidates’ agendas, along with foreign policy, our economy and global warming. Whatever the election’s outcome, all of us in the autism community look forward to working to keep autism on the presidential radar after next year’s inauguration.

MassMutual’s SpecialCare helps families with autism set up special trusts

by Beth Finke

In my “Adults and autism: Our kids might outlive us” post last year, I told readers that
Mass Mutual, one of Easter Seals’ national corporate partners, offers helpful resources for people with disabilities and their families when it comes to estate planning.

Now I’m starting to think, hey, maybe a Chicago Tribune columnist is reading our blog! Humberto Cruz mentions MassMutual and Easter Seals when answering a reader’s question in yesterday’s Chicago Tribune about special trusts for children with autism.

Q: My 10-year-old son has autism and will need care the rest of his life. This has put quite an emotional and financial strain on my husband and me. His parents and mine are willing to help, but we’ve heard it’s not a good idea to put our son in their will because it might affect his ability to qualify for financial aid. Can you shed light on this?

Take it from me: it’s true. Experts recommend families prevent assets from going directly to a child with a disability. Our son Gus was still a teenager when my husband and I set up a special trust for him — when people with disabilities or special needs own or inherit property above a certain dollar value (generally $2,000) they risk becoming ineligible for certain government programs, such as Supplemental Security Income and Medicaid.

“The government doesn’t go out and advertise it. A lot of times families are not aware of that fact,” said Joe Eppy, a special-care planner in Florida with the MassMutual SpecialCare program, which assists people with disabilities and other special needs, and their families.

A better solution, experts in the field say, is to set up a special-needs or supplementary-needs trust that allows families to safeguard the child’s eligibility for benefits while also providing for additional needs not covered by government programs.

Understandably, for many families dealing with the day-to-day struggles of caring for a disabled child, “the last thing in their minds is planning for the future,” said Joanne Gruszkos, founder of the MassMutual program.

But it is important for parents to take the right steps to make sure their child is cared for after they die. That’s particularly the case with autistic children: People with autism tend to have a longer-than-normal life expectancy, Gruszkos said, and therefore could need care longer.

After turning to those experts at MassMutual, the Tribune columnist goes to other experts — us!

Easter Seals, which offers services to people with disabilities and their families, recommends that in addition to setting up a special-needs trust, parents of disabled children draft a “letter of intent.” This letter, while not legally binding, provides a guide for the child’s caregivers or the courts on how the parents would like the child to live after they die.

“With Open Arms,” an informative 72-page guide by Easter Seals and the National Endowment for Financial Education, includes a worksheet to help parents begin writing such a letter.

You can download With Open Arms for free at our web site.

For a printed copy, send a $5 check (for shipping and handling, payable to Easter Seals) to:

With Open Arms/Easter Seals
230 W. Monroe St.,
Suite 1800
Chicago, IL 60606.

The printed guide can also be ordered free from the MassMutual SpecialCare site, where parents and caregivers can also request a free compact disc containing a fillable Word document template for a letter of intent.

Read more about MassMutual’s SpecialCare program.

Do social skills define autism?

by Beth Finke

I just read a blog post questioning the emphasis put on “social skills” when defining autism.

Yes, autism affects how autistic people socialize. We don’t do it like neurotypicals. But that isn’t the root or sole effect of autism, nor is it even enough for a diagnosis. Having a hard time socially is something many, if not most, of us experience. But many people without autism have a hard time socially, too.

There is no one thing that every autistic has, that distinguishes autism from anything else. Instead, autism is defined by people having several of a set of characteristics – not all the characteristics, but enough to be significant, and enough to distinguish autism from many other neurological differences.
Having just one characteristic (for instance, “social trouble”) is not autism.

The blogger’s web site identifies him as “an autistic adult who wants to see my people succeed and prosper in this world.”

Unfortunately, there are a lot of difficulties we experience, only some of which have anything to do with our actual autism. Many of them deal with the way society sees and treats us.

The site encourages readers to explore the difficulties people with autism experience, and it features resources that might help people with autism overcome some of those difficulties.

Please note that I enjoy being autistic. I am happy to be who I am, and that I consider autism to be a key part of my existence. You will not find self-pity here, nor will you find information on how to cure my kind of person. I hope you stick around long enough to learn why I feel this way!

I did stick around his site for quite a while, and felt rewarded for taking the time.

Pragmatic pediatrician ponders autism

by Beth Finke

I just read a post titled “Kids with Autism” on a blog called the Pragmatic Pediatrician. The Pragmatic Pediatrician works in a remote area with few healthcare providers – I bet that being able to blog helps her feel more connected to others in the field. Hers is a federally-funded community health center that accepts all insurance plans and all Medicaid plans. The clinic also has a sliding fee scale for those without insurance.

Imagine!

Her “Kids with Autism” post referred to recent stories of families with autism being asked to leave church services.

I spent a summer working at a camp for people of all ages and abilities with autism. I also worked in a group home for five men with autism and did some research on the topic. Having experienced the enormous range of abilities or disabilities, I was wondering what I would have done in the above situation. My gut reaction would be to find a church that had a service that was perhaps adapted to my child, and such a church was mentioned. I think I would be hurt that my family was rejected. Then again, some of the behaviors associated with autism can be very challenging to handle in public. And, they are not always predictable.

Thoughts?

College-bound with autism

by Beth Finke

The focus on kids who have autism sometimes makes it easy to forget … they grow up! The first big wave of children diagnosed with autism spectrum disorder is moving beyond high school, and an Associated Press article outlines the challenges college students with autism might face.

Many students with Asperger’s or other autism-like disorders face new challenges in a college setting. The syndrome hampers communication and social skills, so along with difficulties staying on top of their studies, these students may struggle with making friends and living more independently. They also may be more reluctant to ask for help.

After highlighting a few colleges that have special services for students with autism and mentioning groups that are forming to address the needs of these students, the story gives this bit of advice:

Families looking for the right college for autistic kids should ask whether a school has a counselor who specializes in autism, if professors receive training about it, and what academic accommodations, such as additional time for taking tests, can be made, experts said. Students also should inquire about social opportunities: Does the school have an autism organization for students? Would the university help find a peer mentor?

I was glad to see media coverage of this aspect of autism. Higher education institutions usually make accommodations for students with disabilities, but universities are not legally bound to provide the extent of services that students receive between kindergarten and 12th grade.

Thumbs down for “Tropic Thunder,” thumbs up for Maurice

by Patricia Wright

I love going to the movies. Everything from Batman to Juno will get me to a theater. There is nothing better than sitting in anticipation with my popcorn and waiting for the big screen to light up.

But I won’t be in the theater this week when the feature film Tropic Thunder opens.

I get it. Ben Stiller’s new movie is meant to lampoon the Hollywood film industry. But it is just NOT necessary to have people who live with intellectual disabilities become the objects of such broad satire. The discrimination experienced by the six million individuals with intellectual disability in the United States is intolerable. This movie only adds to the discrimination they face every day.

Wendy Murphy of Easter Seals Metropolitan Chicago was quoted in a story in today’s Chicago Tribune about the movie’s use of the word “retard.”

“Sometimes I think the word has almost lost its meaning,” said Wendy Murphy, director of therapeutic schools for Easter Seals Metropolitan Chicago. “I hear a lot of teenagers using the word now, like they don’t know at all what it means.”

The article ends with some terrific words of wisdom from Easter Seals Autism Blog contributor Maurice Snell.

Just ask Maurice Snell, a 24-year-old employee at Easter Seals’ Therapeutic School and Center for Autism Research in Chicago.

Snell has autism and has been called retarded plenty of times.

“I hear the word retarded, it’s basically like putting people down,” Snell said. “I’ve felt that way when I was called retarded. I just wasn’t motivated … It hurts my feelings very deeply.”

He overcame such barbs, graduated from college and became a key spokesman for Easter Seals and for people living with autism.

Snell said he understands, and believes, that the filmmakers didn’t mean to be hurtful.

“But I would tell them,” he said, “not to judge a book by its cover.”

Maurice, I couldn’t have said it better.

Easter Seals — and I — join the disability community in its criticism of Tropic Thunder.

Tell DOJ what you think about autism service dogs

by Beth Finke

The Department of Justice (DOJ) has released a Notice of Proposed Rule Making (NPRM) that will expand the definition of “service animal.”

The new rules are meant to clarify what qualifies as a service animal — and to avoid confusion — when it comes to implementing the Americans with Disabilities Act (ADA).

Of particular interest to people concerned with autism assistance dogs is DOJ’s categorical statement:

Animals whose sole function is to provide emotional support, comfort, therapy, companionship, therapeutic benefits, or to promote emotional well-being are not service animals.

Control of the service animal in public settings is also emphasized in the NPRM. A post on a widely read blog called AutismVox expresses a concern that people with autism may have to “re-categorize” themselves to qualify their dogs as service animals.

… there is generally a lot of hesitation to referring to autism and autism spectrum disorders in the category of “mental disability/impairment/health, etc.” But what if recourse to such categories is necessary to ensure that an autistic child can have a therapy dog in school with them?

It’s not just schools that are scrutinizing autism assistance dogs — a story in a New Zealand newspaper last week reports that Quantas forbid three autism assistance dogs from boarding a plane in Los Angeles.

Qantas said it allowed service dogs to travel in the cabin if they were registered, such as guide dogs, hearing dogs, mobility assistance dogs or any other dog that a person with a disability required to help them with their travel.

“The passenger must carry and present a recognised Service Dog ID card or documentation at the time of check-in,” a spokeswoman said. “In this case, although Qantas operated the flight, the passengers travelled as customers of American Airlines. Therefore, American Airlines has responsibility for booking, ticketing and providing passengers with information.”

She said Qantas would investigate the way the matter was handled and contact the customers directly.

Your opinion on the rule changes proposed about service dogs are welcome. The Department of Justice has made it easy to submit your comment to them by email. Just make sure to go to the site this week — August 18, 2008 is their deadline for accepting comments.

Maybe Michael Savage has “compassion deficit disorder”

by Beth Finke

Last week, New York Times reporter Judith Warner published a blog post called Compassion Deficit Disorder.

In the post, Warner compares Michael Savage’s accusation that autism is a fraud to comments by Senator John McCain’s campaign manager that Barack Obama had “played the race card.” From there, Warner talks of how her niece’s schoolmates at a Midwestern suburban high school “bewailed the terrible unfairness of a college application system that, they believed, gave unfair advantage to racial minorities and students from economically disadvantaged homes.”

This seemed like a bit of a stretch to me at first. What did Michael Savage, John McCain’s campaign manager and these suburban high school kids have in common? I kept reading, though, and got her answer.

I won’t dwell too long on this. I’ll just say that Savage is hardly alone in his views.

From where — other than ignorance — does all this ugliness spring? From a cultural moment when people feel locked in hand-to-hand combat, competing for an ever-shrinking stock of resources.

As is usually the case, this piece makes more sense when you read the entire post. If you didn’t get a chance to read it when it was published on August 7th, I encourage you to read it now.