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

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?

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

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.


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.



College-bound with autism

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

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

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”

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.


Maurice reports in from White Sox Field

Tuesday was the grand opening and unveiling of the new White Sox Field, Easter Seals’ “field of dreams.” White Sox Field is a softball field designed for people with autism, and it is located right next to the new Therapeutic School and Center for Autism Research. It was named in honor of the White Sox, as Chicago White Sox Charities donated $1 million to this project, which includes the weight and exercise room in the new school. The new field is a dream come true, as it will play part to many softball or baseball games at the school.

The celebration Tuesday featured reporters from many different TV stations. If you missed them on TV, you can link to NBC5 TV, Fox 32 Chicago TV, and CLTV Chicago to see the segments online. (For that last one, click on the video labeled Ballpark for autistic children as well as Unedited video: Sox mascot steals reporter’s mic for a quick mention of Easter

The main star of the day, of course, was our beloved White Sox manager Ozzie Guillen, a great spokesperson for autism at Easter Seals Metropolitan Chicago.

“It’s very important that the kids reach their goals as this field will bring love back,” explained Ozzie in a news interview. His remarks were encouraging words of inspiration that impacted many families of children with autism.

This new field has passed with flying colors, as demonstrated by many students at the school. Hopefully, it will play host to an Easter Seals World Series in the future. You can put it on the board … YES!


Chicago White Sox team-up for autism

I’m not a member of any Rotary Club. I am a White Sox fan, though. And I’m also a fan of Easter Seals Metropolitan Chicago’s new state-of-the-art Therapeutic School and Center for Autism Research.

So when I found out that members of Rotary District 6450 and other Chicagoland Rotary Districts were joining together at a White Sox game tonight, and that 100% of the ticket profits will provide support to Easter Seals’ new Therapeutic School and Center for Autism Research … well, I bought a ticket.

Actually, I bought four. The White Sox are playing the Detroit Tigers tonight, and my husband Mike and I invited two Tiger fans to come along.

A story in yesterday’s Chicago Tribune about White Sox manager Ozzie Guillen attending the unveiling of White Sox Field (a softball field designed for people with autism) got me revved up for tonight’s game. White Sox Field is adjacent to the new Easter Seals Therapeutic School and Center for Autism Research on Chicago’s West Side, and Chicago White Sox Charities donated $1 million to the new facility — the largest direct contribution to the project.

Guillen joked that he had plenty of time to attend, as he’s serving a 2-game suspension, but he spoke passionately about his interest in helping children with autism both here in Chicago and in his native Venezuela.

“Don’t treat them like somebody else,” Guillen said. “Treat them like the human beings that they are. Give the best day to these kids every day. That’s the main reason we helped build this field, to give them as many great days as possible.”

Ozzie’s suspension is over today, so I’ll be cheering him — and his team — on from the stands. I’ll be cheering the Rotarians seated around me, too. And of course I’ll be cheering for all the folks at Easter Seals Metropolitan Chicago too — yay, team!


More on autism service dogs

If you read my What do autism assistance dogs do? post, you know I was a little skeptical about tasks dogs might be able to do for people with autism.

But now, I have seen the light!

A well-written newspaper article about Nichelle Drew and her five-year-old son Kaleb, who has autism, helped me understand: autism assistance dogs can be particularly helpful with children who are apt to run away.

So far, none of the locks the Drews have installed has managed to keep him in. Nor have the weighted blankets that are intended to have a calming
effect managed to keep him in bed, Nichelle said.

And there are more potential dangers outside than strangers and traffic: the family lives by railroad tracks and a creek in Villa Grove, Nichelle said. To keep Kaleb safe, she said, she, her husband and a cousin take turns staying awake with him.

A service dog would be not only a companion for Kaleb but a watchdog who would try to stop Kaleb from running away, then alert the family if he did get out of the house and help find him through scent, she said.

Another mom, Casey, commented to my blog outlining her plans to train an autism assistance dog that would help keep her 7-year-old son from running away.

I plan to have 2 leashes on the backpack harness that our dog will wear, one for Josh so he can act as if he is walking his own dog and I will have the other to be in control. There will be a smaller belt that will clip onto a safety belt that Josh will wear on his waist. If he is to run, I can control that darting by telling the dog to curb and stay. This is the ONE task we hope our dog will do to help us keep Josh safe out in public. /blockquote>

While Casey plans to train the dog for Josh on her own, the Drews are investing $13,500 to get a dog for Kaleb from Autism Service Dogs of America.

The cost is so high because the expense of training the dogs is so high, Taylor said. Most of the dogs are golden retrievers, Labrador retrievers and Golden/Lab mixes, and it takes two years to get them trained … She has placed about 20 dogs so far, but is gradually building up the number each year in hope of placing about 30 per year.

Taylor, by the way, doesn’t earn her living through service dogs. A former special-education teacher-turned-attorney, she covers her own living expenses with a private law practice, she said.

Her organization has had a couple of applications from adults with autism, she said, but she is focusing for now on placing dogs with children with autism who run away.

Okay, so I’m convinced. Autism assistance dogs could help prevent kids from running away. But I still question the training methods. If it really takes two years and $13,500 to train an autism assistance dog, how on earth will Casey have the know-how to do that specialized training on her own? Or might Casey have it right? Is two years of training and a $13,500 fee more than necessary to train a dog to keep a child with autism from running away? Either Casey is taking on too much, or the Drews are paying too much.