Radio interview: Artistry and autism

by Beth Finke

One of our bloggers, Katy Beh Neas, did a great radio interview around autism [Windows Media Player file] last week — it aired on six Washington, D.C. and Baltimore Clear Channel radio stations on Sunday, Sept. 7.

Katy is the Vice President of Government Relations here at Easter Seals, and her interview covered the basics of autism. She talked about some of the symptoms of autism and gave suggestions on where parents and caregivers can go to get a diagnosis for their loved ones. “Parents are very good judges of what’s going on with their children,” she said, adding that anyone having trouble getting a timely diagnosis should visit the Easter Seals Web site to find an Easter Seals affiliate nearby. “We can help — one thing we do know is autism is treatable. We know that intervention works, but people have to get it.”

Toward the end of the interview she thanked Quixtar North America/Amway Global Independent Business Owners for its Artistry Beauty Begins with Heart program. Beauty Begins with Heart raises funds for Easter Seals’ autism services through the sale of Artistry cosmetic products. Since 1983, Quixtar North America/Amway Global Independent Business Owners have partnered with Easter Seals to support services to children and adults with autism and other disabilities. During this time, over $29.3 million has been contributed by Quixtar North America/Amway Global Business Owners.

If you missed the interview, don’t despair! Through the magic of modern technology, you can still hear Katy Beh Neas’ Clear Channel interview online or download a podcast of her interview. I think you’ll agree with me — she sounds swell!

Father says son’s autism helped save his life

by Beth Finke

The tendency to always see a disability as a negative can really get to me sometimes. “Wow, you’re blind. It must be hard to get around!” Instead of, “Wow, you’re blind. You must be good with directions!”

Ask about a kid with autism, and you’ll hear, “He has such weird behaviors — he does the same thing over and over and over again.” Instead of, “that kid really has perseverance!”

So it was nice to read a CNN story emphasizing a benefit of autism for a change. The story is about Walter and Christopher Marino, a father and son who were swept into the Atlantic Ocean.

Despite the danger, Christopher, who has autism, was enjoying himself, his father said. The boy lacks a fear of death because of his autism and finds comfort in the water, Marino told CNN.

Marino finds comfort in his son. Their unique circumstances helped keep them alive for more than 12 hours in the open ocean, Marino said.

“With many kids with autism, the thing that is so dangerous is that they have no concept of fear or fear of death,” Marino said. “In this case, though, it perhaps saved him — that and the fact that water is one of his favorite things. Whenever he goes missing or tries to run away, we can always find him near water … even at the mall if it is just near a fountain.”

The CNN story was part of their Incredible stories of survival series — the series tries to answer the question of why some people survive disasters while most others die. You can read the whole story and see pictures on the CNN site — the rescue is pretty amazing.

New Orleans newspaper notices our autism blog

by Beth Finke

I was delighted to hear our Easter Seals and Autism Blog mentioned in the New Orleans Times-Picayune today. The post touts the growing number of online resources available to those of us who have disabilities.

As the Internet continues to grow, offering more and more opportunities to connect with others, many forms of online communication tools have surfaced. Some sites and tools are becoming increasingly popular among people with disabilities.

The author of the article, Jane Pic Adams, is the mother of a daughter with Down syndrome. Adams writes about issues of interest to people with disabilities, and she highlighted our blog as a social networking site targeting people interested in disability issues. It feels great to be noticed — thanks, Jane!

What are your priorities for autism supports and services?

by Beth Finke

You might remember a post Patricia Wright wrote last December about Dr. Stephen Shore’s appointment to the Department of Health and Human Services (HHS) Interagency Autism Coordinating Committee.

That committee has been hard at work since December. I just gotword that they are asking members of the autism community — that’s you! — to comment on their draft Strategic Plan and its priorities. You’ll find more details on how to make your opinions known to that committee at the bottom of this post. Before we get to that, though, I want to quote from Patricia’s blog so we can feel good all over again about Stephen Shore being on that committee.

I was absolutely delighted to hear that Dr. Stephen Shore, a person with autism, has been tapped for membership. Shore is executive director of Autism Spectrum Disorder Consulting and serves on the board of the Autism Society of America (ASA). His books about autism are available at the Easter Seals and Autism bookstore, and you can read a review of his book, Beyond the Wall, on our blog.

I had the pleasure of meeting Shore at our 2007 Easter Seals Training Conference in April. Shore is a well-known public speaker, and at the conference he provided a personal perspective on the experience of living with autism…Shore’s appointment gives the Interagency Autism Coordinating Committee the “personal touch” it needs.

Okay, back to the IACC asking you for input. deadline for comments is September 30, 2008, and you can read the official Requests for Information (RFI) notice (NOT-MH-08-021) for more information and instructions for responding.

Campaigning with a child who has special needs

by Katy Beh Neas

I’ve been part of some interesting conversations about Senator John McCain’s choice of Sarah Palin for vice president and the fact that she has an infant with a disability. I guess I’m not alone — a story in today’s New York Times says the country is buzzing about Sarah Palin and her infant son Trig.

No one has ever tried to combine presidential politics and motherhood in quite the way Ms. Palin is doing, and it is no simple task. In the last week, the criticism she feared in Alaska has exploded into a national debate. On blogs and at PTA meetings, voters alternately cheer and fault her balancing act, and although many are thrilled to see a child with special needs in the spotlight, some accuse her of exploiting Trig for political gain.

One of my neighbors thinks that it is irresponsible for a mother of an infant with a disability to accept the VP nomination. I’m torn on a number of fronts.

First, if Senator McCain had chosen a father of an infant with a disability, would anyone question his commitment to his children? Second, many infants with Down syndrome have both developmental and medical issues, and need regular occupational, physical and speech therapy. Many also have heart issues that require surgery. The time commitment to meet these needs is significant.

Can Governor Palin and her family put in place the supports they will need while she’s on the campaign trail? What do you think? Is the sacrifice that the Palin family is making in this campaign appropriate? Do we have a right to ask? I’ll be very interested in your comments.

Gov. Palin pledges to make U.S. more welcoming to special needs kids

by Beth Finke

Ever since Sen. John McCain (R – AZ) announced Sarah Palin, the governor of Alaska, as his running mate last Friday, much has been made of her choice to have a baby she knew would be born with Down syndrome. Sarah Palin talked about her son Trig in her acceptance speech last night at the Republican national Convention:

You know, from the inside, no family ever seems typical, and that’s how it is with us. Our family has the same ups and downs as any other, the same challenges and the same joys, sometimes even the greatest joys bring challenge. And children with special needs inspire a very, very special love. To the families of special needs — (cheers, applause) — to the families of special needs children all across this country, I have a message for you. For years, you’ve sought to make America a more welcoming place for your sons and daughters. And I pledge to you that if we’re elected, you will have a friend and advocate in the White House.

Our family is one of those that Sarah Palin was talking about — our son Gus was born with special needs. I’m hoping that in future talks, the Alaska governor might elaborate on her plans to advocate for us if she is elected vice president. In the meantime, you can read the entire transcript of last night’s speech online.

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.