Consumer Reports: providing for disabled heirs

In my “Adults and autism: Our kids might outlive us” post, I talked about estate planning and special needs trusts that can be set up when your child has autism. I also mentioned that MassMutual, one of Easter Seals’ national corporate partners, offers additional resources for people with disabilities and their families.

Here’s another resource to let you in on – an article on providing for disabled heirs in the August, 2007 issue of Consumer Reports Money Adviser says the American Bar Association’s (ABA) Commission on Mental and Physical Disability Law maintains an online directory of lawyers who are qualified to set up special needs trusts in your state.

The list is intended only as a research tool; neither the ABA nor the Commission on Mental and Physical Disability Law officially endorses any of the lawyers or legal service providers in this directory.

But at least it’s a start.

As I said before, I know it’s hard to add yet another item to a “to-do” list, especially when it concerns something as morbid as death! But knowing a child with autism has a special needs trust set up in advance can give parents and caregivers real peace of mind.


Fantasy football, real-life dreams

Here’s something else to consider when making your fantasy football picks for the upcoming August deadlines. Gene Wojciechowski’s column last week says that despite everything we’ve heard about steroids, dog fights and gambling in sports, there are still many good athletes out there.

One of the good guys Wojciechowski singles out is Ahman Green.

The column comments on a deal the Houston Texans running back made with his teammate Jason Simmons. On July 23, Green made good on his promise to make the down payment on a home for a single parent in exchange for reclaiming his jersey number from Simmons.

“Green got Simmons’ jersey number (30), and in return, Regina Foster and her 7-year-old autistic son, Reginald, got a down payment on their first house. Green wrote a check for $25,000, while Texans owner Bob McNair added another $25,000.”

The column acknowledges that young Reggie might not comprehend right away exactly what moving to his own home means. But when he sees the backyard, he’ll be happy — and that’s all that matters to Foster, who couldn’t afford a down-payment on her own.

The story was also featured in NFL News on But with all this press, one thing ESPN didn’t mention was the Ahman Green Golf Shootout For Easter Seals. Green started the golf tournament while he was still playing for his former team, the Green Bay Packers. Green signed with the Houston Texans as a free agent in March, and according to a story on the Houston Texans official Web site:

“Green was particularly moved by Foster’s story, having worked with autistic children for the past few years in conjunction with the Easter Seals charitable organization.”

It wasn’t until after Green and Simmons delivered the down payment check to Regina Foster that she admitted she hadn’t really been a football fan before.

But now she’s rooting for Ahman Green. Me too!


Autism and baseball trades: what a relief!

The July 26 sports section of the St. Louis Post-Dispatch had a story about a possible baseball trade that – get this – has a human element to it.

In the story “Human element enters into any talks about dealing Springer,” Cardinals manager Tony La Russa is quoted as saying, “There will be a humanity to any Russ Springer deal.”

Russ Springer, a righthanded reliever, is 4-1 with a 2.92 earned-run average. He has held righthanded batters to a .165 batting average while striking out 45 hitters in 37 innings.

As tonight’s Major League Baseball non-waiver trade deadline approaches, the story reports Springer is one of the “most attractive pieces the Cardinals have to move.”

The issue? Russ Springer’s son has autism. One reason Springer signed a one year deal with the Cardinals in the first place was that the Springers prefer the school their son attends in the St. Louis area. Springer says he “came back here for more than the baseball; it was best for my family.”

I’m a Chicago fan, but I gotta say: GO CARDINALS!


The ADA: past, present, and future

Last Thursday I attended the National Council on Disability (NCD) press conference marking the 17th anniversary of the passage of the Americans with Disability Act (ADA). As mentioned in a previous post, two important reports were released by the NCD examining the impact and scope of the ADA since its passage.

More information on these two reports can be found on the NCD Web site:

Speakers included stakeholders from the business world, legal professionals, government entities, educational institutions, and individuals with disabilities. They discussed how the ADA has affected their lives and the challenges that still lay ahead. A central theme that arose from the press conference is that while we have made some progress in the four major goals of the ADA (equality of opportunity, full participation, independent living, and economic self-sufficiency); there are still significant strides to be made, especially in the areas of employment, transportation, health care, and education.

With the introduction of the ADA Restoration Act, a strong feeling of hope and optimism exists that the challenges facing Americans with disabilities will be met and addressed. The ADA Restoration Act will help individuals with disabilities focus on the discrimination they have experienced, rather than having to prove that they are “disabled enough” to fall into the intended scope of the ADA.

I encourage you to contact lawmakers and encourage them to cosponsor the ADA Restoration Act, thus enabling people with disabilities to be judged fairly on their own merits.


Delivering a message of hope

Today’s What’s My Line? column in the Chicago Sun-Times features a story about Maurice Snell, Easter Seals’ 2007 National Adult Representative.

Maurice started attending our Easter Seals Metropolitan Chicago Autism Therapeutic Day School when he was six years old. As he says in the Sun-Times interview, Easter Seals helped him change his perspective. “When I first entered, I was crying. I did not want to talk. I was shy. But they helped me to dig deep into myself, come out of my shell to be the creative Maurice Snell that is here today.”

These days, Maurice is busy promoting Easter Seals Metropolitan Chicago’s Autism Therapeutic Day School. He described his speaking tour to the Sun-Times like this: “I go to different places across the United States and tell people the experience I had here and what (this organization) can do for those who are living with autism. So I’m here to deliver a message.”

How fortunate we are at Easter Seals to have Maurice Snell as our messenger.

To learn more about “the creative Maurice Snell that is here today,” be sure to watch his movie.

Read Timothy Muri’s biography


New reports on the ADA: I’m all ears

I lost my sight in 1985. Up until then I had been working as an advisor at a major University, counseling students who wanted to study abroad. Undergraduates would come in, we’d talk, I’d get on the phone and make sure their credits would transfer. It’s a job a person without sight could do. But the Americans with Disabilities Act (ADA) had not been passed yet. And I was fired.

This Thursday is the 17th anniversary of the passage of the ADA, and the National Council on Disability (NCD) is holding a news conference that morning at the Crowne Plaza Chicago Metro. I’m going to be there watching.

Or listening, I guess!

NCD is an independent federal agency that provides advice to the president, Congress, and executive branch agencies to empower individuals with disabilities to achieve economic self-sufficiency, independent living, and inclusion and integration into all aspects of society. Sound familiar? Easter Seals provides services so that people living with autism and disabilities have equal opportunities to do just that: live, learn, work and play in their communities.

NCD has put together two new reports on the Americans with Disabilities Act:

  1. “The Impact of the Americans with Disabilities Act: Assessing the Progress Toward Achieving the Goals of the ADA” features a two-year study of the impact the ADA had on the lives of Americans with disabilities since the ADA was passed.
  2. “Implementation of the Americans with Disabilities Act: Challenges, Best Practices, and New Opportunities for Success” describes the experiences and ideas of employers, legal professionals, governmental entities, and individuals with disabilities when it comes to ADA implementation.

The reports will be released at the news conference on Thursday. I’ll be all ears.


Harry Potter and the Chamber of Autism

What can reading a Harry Potter book teach us about autism? Well, ask a teenager with autism who also happens to be a Harry Potter fan — he can tell you!

James Williams is 18 years old and speaks about autism regularly at conferences. He spoke at the Autism Society of America (ASA) conference I recently attended with others from Easter Seals. The speech James gave at the ASA conference was about being “In Search of the Proper Autistic Friend”.

The transcripts to all of the speeches James gives are available at his Web site – that’s where I found out how someone with autism could relate to the characters in Harry Potter books. In his cleverly-titled speech, “Harry Potter and the Chamber of Autism”, James describes how Harry Potter sometimes has trouble approaching his friends. James can relate. He also relates to Hermione, who obsesses over wizardry, fixates on specifics and is often accused of being a know-it-all.

Most importantly, James says that Harry’s feelings of relief after being “diagnosed” as a wizard are similar to his own feelings of relief being diagnosed with autism. Before Hagrid told Harry that he was a wizard, Harry had no idea that wizards who are angry tend to use magic even if they do not want to.

“Kids with autism often make things happen that they can’t explain,” James says. “And if they don’t know they have autism, they don’t know why, no matter how hard they try, they are always getting in trouble.”

Harry did well when working with teachers who acknowledged and worked with his special talents and needs. James can relate.


Autism-friendly screening: Harry Potter

If only we lived in England! Among all the buzz I heard this weekend about the new Harry Potter book I happened to catch wind of a theatre in Nottingham featuring a special autism-friendly screening.

“Harry Potter and the Order of the Phoenix” will air in a special “autism-friendly” setting at Broadway Cinema in Nottingham today at 1:00 p.m.

Sponsored by the Prince of Wales Arts & Kids Foundation, the film will be shown at a lower volume and with the lights turned on in the theatre during the movie. Broadway Cinema assures guests that they can move around and make noise during the show without being reprimanded.

If special screenings like this go on in the U.S., I’d love to hear about them.


Acting normal in a world that thinks you’re not

This week’s episode of This American Life, features stories about the developmentally disabled and people with special needs. One is Johnathan, a man on the autism spectrum. The program originally aired on National Public Radio in 2002 and is being replayed this weekend.

    Stories about people who were told that they’re different. Some of them were comfortable with it. Some didn’t understand it. And some understood, but didn’t like it.

As host Ira Glass says in the introduction, this program has “voices and stories that usually do not make it to the radio.”

Give it a listen this weekend, or listen online anytime.


Book review: Roy Richard Grinker’s “Unstrange Minds”

Read more about Unstrange Minds at Amazon

Recently I read the book Unstrange Minds:  Remapping the World of Autism by Roy Richard Grinker. Mr. Grinker has a daughter with autism. In this book he skillfully combines the story of his family’s journey through autism with comparisons of autism awareness, treatment and struggles of families in other countries around the world. I found the descriptions of how other cultures view and treat autism to be enlightening. It appears that even with the struggles we continue to have in the United States with funding, research, treatment models and access to interventions, we are much more fortunate than many of our peers in other cultures.

When I first learned of this book, I heard that the author denied that there is an autism epidemic. I was ready to read this book with a very critical eye. I was pleased to see that he is not denying that there is an unprecedented increase in the diagnosis of autism. He is discussing the history of the diagnosis and the evolution of our own country in the recognition and acceptance of this diagnosis. I found this book thought-provoking and would recommend it to those who enjoy learning of other families’ triumphs and struggles, and who are curious about how the rest of the world views autism.