Accessible accommodations at the ASA Conference

by Julie Dorcey

The hotel industry is customer-focused by nature, but here in Scottsdale, Arizona, the Westin Kierland Resort and Spa has taken hospitality to a new level in hosting the Autism Society of America’s (ASA) 38th Annual Conference.

ASA and Westin staff began laying the groundwork for the conference last fall, with much discussion on how to make the resort an especially comfortable and inviting place for people with Autism Spectrum Disorders and their families.

“It is very important to us that everyone feel welcome here. We wanted to minimize any guest concerns by paying attention to the details that would allow everyone to really enjoy themselves,” says Conference Services Manager Stacie Stephenson.

Some of those details have included staff sensitivity trainings attended by a representative from every department — so information could then be relayed to every person working in any capacity during the conference.

A waterfall in the lobby has been turned off for the duration of the conference because it might be distracting to individuals on the spectrum.

Resort chefs spent a great deal of time shopping for and preparing menus to guarantee that individuals with sensitivities to gluten and casein have a wide variety of food choices in each of the resort’s eight restaurants. The room service, box lunches and kid’s menus have also been modified to provide gluten-free, casein-free options.

Additional signage serves to make the sprawling accommodations especially easy to use. And extra staff is on-hand to provide assistance to any conference attendees needing a little extra time and attention.

“This is a positive learning experience for everyone involved, and our staff are truly benefiting as much as our patrons,” says Public Relations and Marketing Director Christie Noble.

Many people with autism and their families live in a society that may not understand or be accustomed to their needs. This year’s ASA Conference is themed Together a Brighter Tomorrow. The staff members here at the Westin Kierland have proven to be a great example of what we can all hope for.

Read Julie Dorcey’s biography.

Easter Seals partners with the Autism Society of America

by Jim Williams

Today is a very important day for people with autism and their families as well as for Easter Seals and the Autism Society of America (ASA). At the annual ASA conference here in Phoenix, we announced a formal partnership between the two organizations. Working together, we believe that we can advance the cause of research and treatment for those with autism much more effectively than if we were working separately.

I had the opportunity to address the attendees at the conference this morning, and the response to our partnership was warm and enthusiastic. There was a real buzz in the room as we talked about the possibilities and opportunities that will be generated by our working closely together.

So stay tuned as this partnership takes hold. I expect great things to happen both in the short term and the long term as a result. In the meantime, you can learn more here about the nature of the partnership and what we expect to accomplish as a result of these two strong organizations joining hands.

Inclusion and “All Kids Can”

by Beth Finke

Ever since my memoir Long Time, No See was published I’ve been asked to guest-lecture for college classes. I usually talk about writing, about the assistive technology I use to write, or simply about what it’s like to live with a disability.

When I speak to the teacher education programs at Elmhurst College this Thursday, though, I’ll be talking about something a little different. I’ll lecture on what it’s like to be a parent of a child with a disability.

The students I talk to on Thursday are studying to be general education teachers. As part of their curriculum they are required to take one — just one — course in special education.

Considering that more than 95 percent of students with autism and other disabilities receive some or all of their education in regular classrooms, can one special education course for future teachers be enough?

This is where All Kids Can helps. Created by the CVS/pharmacy Charitable Trust, All Kids Can is a five-year, $25 million commitment to making life easier for children with disabilities. Through this signature program, CVS and the Trust help non-profit organizations like Easter Seals raise awareness in schools and in local communities about the importance of inclusion. In 2007, $350,000 in All Kids Can Fund grants went to support Easter Seals affiliates across the country.

I know that the general education students I’ll be speaking to on Thursday will benefit from hearing how inclusion played a major role in the life of my son, who has severe disabilities. But I’m only one woman. I can’t do it alone. That’s why I’m grateful to CVS for funding programs to promote the awareness of inclusion and its importance to children with disabilities.

An update on Maurice’s summer

by Maurice Snell

It’s been a while since I last posted a blog to the Easter Seals and Autism Web site. I haven’t really traveled outside of Illinois lately, but I will soon. However, I am excited about the changes at Easter Seals and how that will affect many Chicagoans (and Americans as well).

It wasn’t until the last week before summer break — Father’s Day to be exact — that I participated in a 5K Run and Walk to raise awareness about autism. I was fortunate to reunite with the people who work for Easter Seals Joliet and they were thrilled to have me and the family come a long way to join them. At first, I was nervous because I haven’t sprinted in a long time; I feared that I was out of shape and couldn’t keep up with the others. But fortunately, I did not dare to run; I contributed by walking with the other walkers and help spread the message to the town that the children need our help today. Our mission was to gather everyone up in the community and work hard to reach the ultimate goal. In the end, everyone has reached their goal.

Another great thing I’ve discovered: I’m beginning to see the new Easter Seals Metropolitan Chicago Therapeutic Day School and Center for Autism Research come to form. We just had the groundbreaking ceremony this past October — my, how time flies! The construction people have been working like clockwork putting the new school together. One week, I just saw pictures of the day-by-day construction on the Easter Seals Metropolitan Chicago Web site. Then one week later, they began building up from the ground, up to the second floor of the building. We have to give the construction workers credit for doing a job well done. This is already a start of a greater future for Easter Seals in Chicago and the nation.

As for traveling, I’ll be back to it soon! My next trip is back to Dallas, Texas for a fundraiser for Easter Seals in Greater Dallas, so I’ll hope to report to you about it soon! I wish you all a great summer!

Celebrating independent living on Independence Day

by Beth Finke

This Fourth of July will be the fifth year our son has lived independently of us.

Our son Gus is 20 years old. He communicates by propelling himself to whatever it is he needs. When he wants to hear music, for example, he scoots to the piano.

Gus doesn’t talk or sing, but he does laugh and poke at the piano keys with whoever is playing the tunes. He claps with delight whenever he hears live music. He loves to hold hands, especially while swinging on a porch swing.

When Gus became a teenager, we needed more help with him at home. We found suggestions and advice about in-home services but as Gus continued growing bigger, my husband Mike and I grew older.

Shortly after Gus’ sixteenth birthday, we realized it was time for him to move. We started researching services for adults and eventually decided a group home would be best.

Gus cried his entire first weekend away. So did we, but we thought it best to leave him alone for a while and give him a chance to adjust to his new life independent from his parents. The transition from our home to a group home wasn’t easy, but it turned out well. For all of us.

On our first visit, we found Gus happy and smiling, yet not quite sure what to make of these visitors on his new turf. I sang to him. He felt my face. Suddenly he burst out in laughter,
realizing it really was me. It was a good visit. As I leaned down to kiss Gus goodbye, he took off. He couldn’t wait to get back to his roommates in his new home.

Now when we visit Gus, it’s all fun. No talking him into sitting on the toilet, no muscling him into the shower, no changing his diapers. No drudgery.

Gus seems relieved too … he’s finally allowed to do things independently of his parents.

Hmmm … maybe Gus has more in common with other 20-year-olds than I thought.

Happy Independence Day everyone!

Book review: Paula Kluth’s “You’re Going to Love this Kid!”

by Patricia Wright

Students with autism are becoming more frequent members of general education classrooms. You’re Going to Love This Kid!: Teaching Students With Autism in the Inclusive Classroom, by Paula Kluth, Ph.D., is a unique resource dedicated solely to inclusion and individuals with autism.

Kluth’s book is engaging and informative. The intended audience is classroom teachers, but parents and other professionals working towards inclusive schools will be interested in this book as well.

The opening chapter of the book includes first-person accounts of students who experience autism. These individuals give the reader clarity and insight from a first-person viewpoint about the experience of having autism. Kluth then addresses inclusive schooling and the ins and outs of the Individuals with Disabilities Education Act (IDEA).

Kluth addresses the role of the teacher, placing emphasis on the educator’s ability to support inclusive schooling. Another chapter addresses collaboration, describing how all members of an educational team can cooperate to promote an inclusive school.

Kluth provides practical and creative methods for solving some of the challenges that individuals with autism present in an inclusive environment. Solutions for adapting classrooms to support student participation in classwork, as well as school routines and social activities, are provided.

Another excellent chapter addresses literacy and the importance of literacy instruction for students with autism. And another focuses on challenging behavior, emphasizing a positive approach and encouraging environmental and sensory accommodations to promote positive behavior change.

Kluth provides helpful hints from veteran teachers and individuals with autism throughout this vibrant book. You’re going to love this kid provides a positive view of how inclusive education can be achieved for learners with autism. The mixture of practical solutions with inspiring real-life stories is an excellent resource.

Easter Seals’ P.L.A.Y. Project and Carson’s story

by Ellen Harrington-Kane

I was recently in Ann Arbor, Michigan with my colleague Julie Dorcey from Easter Seals Michigan. We were there to meet with Richard Solomon, M.D. to prepare for an upcoming presentation. Easter Seals staff and Dr. Solomon will be giving the presentation on the P.L.A.Y. Project (Play and Language for Autistic Youngsters) at a session on July 12 at the Autism Society of America’s (ASA) National Conference in Phoenix, Arizona.

The P.L.A.Y. Project is an autism intervention for young children. Dr. Solomon developed this parent-coaching model, designed to be carried out in a family’s home, based on the developmental, individualized, relationship-oriented (DIR) approach of Stanley Greenspan, M.D. Easter Seals provides this intervention in 19 locations across 12 states, including five sites in Michigan.

We got around to talking about some of the children participating in the P.L.A.Y. Project in Michigan — and that’s how I learned about Carson’s story.

Here’s what Carson’s mother says about the P.L.A.Y. Project, and how it has positively affected her child and family:

“Trying to get into Carson’s world was impossible….

We worked very hard to provide security and a comfort zone for Carson, and we especially wanted him to express his needs and wants to us.

We continued to work with Carson, and hoped and prayed so much for the little things we often take for granted with babies and toddlers. Little things (or so we thought) like affection, silliness, acknowledgement, laughter, etc.

Absolutely nothing we tried would work.

Then we discovered Dr. Solomon, Easter Seals and the P.L.A.Y. Project.

It’s because of the P.L.A.Y. Project that we now have a son who is so affectionate and engageable, among other things. I can’t tell you how many times a day — without prompting — Carson says to me, “Mommy, I need you,” or “Mommy, help me,” or “Mommy, tickle me,” or “Mommy, hug me.” It brings tears to my eyes just typing these phrases.

Carson is truly a happy little boy who has made such tremendous progress with the P.L.A.Y. Project. My husband Rob and I will forever be grateful to Dr. Solomon and his P.L.A.Y. Project and Easter Seals Michigan.

Each day brings us so many heartwarming surprises.”

It’s great to hear stories from people who have benefited from Easter Seals’ services! Julie and I will be back in July to blog about our presentation at the ASA’s National Conference.

Media and myths

by Ellen Harrington-Kane

Recently I saw this article on the ABC News Web site titled “Media Coverage May Perpetuate Autism Myths.” Most of the article is related to the continuing discussions over the role of vaccinations in the cause of autism.

Although the article briefly draws attention to the benefits of treatment, they’re not yet making that next critical connection — to the importance of funding for treatments and further research into effective, evidence-based interventions.

I see that Congress recently funded the Combating Autism Act. It’s my sincerest hope that the federal government finally acknowledges the fact that autism is treatable and that millions of people need treatment. This can be done by spending some of those research dollars on studying current treatment options to determine which ones really are effective.

Adults and autism: society needs to step up

by Patricia Wright

This opinion piece in the San Francisco Chronicle details the concerns shared by many parents of children with autism and other disabilities. What happens when these children grow up … and grow out of government-provided support?

In 1989, I began my career teaching high school at Spectrum Center for Educational and Behavioral Development — now known as Spectrum Center. It was my job to educate young men and women with autism age 16 to 21. I perceived my job to be preparing my students to lead productive meaningful lives upon graduation. I thought my students would emerge from high school with the skills I had encouraged them to learn and the support in place to have a job, live with the greatest degree of independence possible, and enjoy their adult lives. My students had significant challenges including difficulty communicating, aggression and self-injury. They required support to ensure participation in daily life activities — clearly these supports would be in place for them to achieve this meaningful life upon graduation from Spectrum Center.

I was sadly mistaken.

Support for adults with autism is abysmal. The good news is that I was in California where the Lanterman Developmental Disabilities Services Act entitles adults to some support. Most states have no entitlement services — there is no guarantee that adults with significant developmental disabilities will receive support after age 21 for the majority of individuals in the United States.

The expectations from the social service agencies were not that my students would lead meaningful lives. Lives that would include supported employment opportunities to learn and develop new skills, recreational opportunities and supported living. The expectation was that my students would be cared for somewhere — sometimes in a large congregate facility … sometimes in a large day program where the expectation was to sit quietly with groups of 20 or 30 other individuals with developmental disabilities. Sitting quietly was not an area where my students achieved a lot of success. I didn’t deem this to be a great result of my hard work prior to graduation. I’m sure my students with autism were not overjoyed with spending their lives in these facilities either.

I’d like to think that by now, almost 20 years later, our society would have decided that individuals with significant needs should have those needs met through the social service system. Unfortunately, not much has changed since 1989. California still has the Lanterman Act where some services are provided. The rest of the country continues to end entitlement services at age 21 — even for those with the most significant disabilities.

We must take action. Our society must step up and achieve the goal set forth by Hubert H. Humphrey 30 years ago: “The moral test of government is how it treats those who are in the dawn of life, the children; those who are in the twilight of life, the aged; and those in the shadows of life, the sick, the needy and the handicapped.”

Currently in Congress, programs important to Easter Seals and adults with disabilities are slated to having their funding maintained, with no increase for inflation. A few programs, including Vocational Rehabilitation State Grants, are poised to receive only modest increases. Please ask your legislators to make funding for people with disabilities a priority.

Learn more about Easter Seals’ services for adults with autism.

Adults and autism: Our kids might outlive us

by Beth Finke

When my husband and I visited our son in his group home recently, I couldn’t get over how much he had grown. He’s a healthy boy! Well, really –- a healthy young man. And though many of us who have children with disabilities don’t like to think about it, it’s likely our children will outlive us.

While most people know about wills, few are well-versed in special legal and estate-planning matters when it comes to benefactors who have disabilities. My husband and I set up a special needs trust when our son was still in grade school. Our son will turn 21 this year –- taking a look at that document again is on our “to-do” list … we need to make sure nothing changes now that he’ll be an adult.

With your hands full trying to raise and advocate for your child, it’s hard to find time to prepare for one very likely possibility: a child with autism might outlive both parents.

The National Information Center for Children and Youth with Disabilities, a federally funded clearinghouse in Washington, D.C., offers estate planning advice when a child has a disability.

I found two pieces of advice from their list especially helpful:

• Find a lawyer who specializes in legal and estate-planning matters for people with disabilities. For referrals, contact a local disabilities group or your local bar association.
• Ask your lawyer about a “special needs trust” or similar arrangement that enables parents to leave assets for a child’s long-term needs and still preserve the child’s eligibility for valuable government benefits such as Social Security payments, health care, subsidized housing and personal attendant care.

It’s hard to add yet another thing to a “to-do” list, especially when it concerns something as morbid as death! But knowing our son has a special needs trust set up for him gives my husband and me some peace of mind.

Mass Mutual, one of Easter Seals’ national corporate partners, offers additional resources for people with disabilities and their families.