Autism assistance dog denied access

by Beth Finke

A news story about an autism assistance dog caught my attention last week. The story reported that four-year-old Jayden Qualls showed up at his California preschool with a new autism assistance dog and was denied access.

School officials said they need to determine if Houdini is a service dog or a companion dog. They also need more time to find out if the dog is warranted at the school and if so, how he fits into the flow. The Americans with Disabilities Act gives Jayden the right to have Houdini in school, Qualls said. Jayden’s parents bought Houdini for $13,000 from a nonprofit called Autism Services
Dogs of America.

In my What do autism assistance dogs do? blog, I questioned the high price autism assistance dog trainers are charging for these dogs. I still do question that. I use a Seeing Eye dog to get around safely, and although these dogs can cost up to $50,000 to train, the guide dog user is never charged that much. My first dog, Dora, cost me $150. Subsequent Seeing Eye dogs cost $50.

And though Jayden’s mom believes the Americans with Disabilities Act (ADA) gives Jayden the right to have Houdini in school, the jury is still out on that one. To qualify as a service animal under the ADA, a dog must be “partnered with a person with a disability and individually trained to do work or perform tasks for the benefit of that person.” Courts would have to decide whether Houdini performs tasks for Jayden or simply acts as Jayden’s companion.

However this all resolves, there is one last question just begging to be asked. Can a four-year-old take care of a dog? If not, who cares for the dog while the dog is at school with the child? You have to be at least 16 years old to train with a Seeing Eye dog— the Seeing Eye believes working with a guide dog demands a certain amount of physical, mental, and emotional maturity. In simple terms, you have to be mature enough to care for a dog.

Maurice reports in from Celebration of Giving

by Maurice Snell

Every May Easter Seals honors its corporate partners at Celebration of Giving. This year when we gathered in Las Vegas we learned that Safeway led the way towards the Easter Seals corporate partners combining to give more than $21 million to Easter Seals. Even though it was a horse race, it was no competition against each other as they teamed up with the other partners to do a great deed.

It was great to be at this reunion of the Easter Seals family, too. The reunion included Adult and Child Representatives from the past and present. Claire Huckel was there, and so were Bethany and Colin DeVault, Palmer Harston, Ryan Odens, and of course, David Owens and Scottie Gaither. Every one of these individuals gave us an update on their progress since devoting their time to the Easter Seals organization. The good news was everyone (including me) is doing well with what they are doing right now. I’ll be writing more about what I’m up to in a future blog, and I wish the rest of the representatives nothing but more great aspirations in life.

2008 is another great year for Easter Seals, which literally translates to another great opportunity for everyone to give towards the Easter Seals organization. The contributions will lead to greater things in life for Easter Seals.

Families with autism help families with autism

by Patricia Wright

Last weekend I spent time with one of my favorite groups of people — parents of children with autism. I was in Bloomington, Indiana at a conference hosted by the Indiana Resource Center for Autism.

Strengthening Our Roots: A Conference for and About Families of Children on the Autism Spectrum was a wonderful demonstration of information sharing and community building for families in Indiana. I learned about homelife that I, as an educator and a professional, can help support and improve. I also observed formal and informal networking of family members — families with experience sharing their expertise with families who have newly-diagnosed children, and families with like children sharing their joys and their challenges. Best of all, I was able to watch families share that knowing smile as others told their stories.

Learning with and from family members is a powerful experience. Families looking for this sort of support can turn to their local Autism Society of America chapter to find out about formal and informal support networks.

Mixing autism and religion

by Beth Finke

A TV news story yesterday about a church banning a teenager with autism from Sunday services prompted me to dig up this helpful resource — Autism and Faith: A Journey into Community is a 52-page guidebook to help clergy, religious educators and families develop “inclusive spiritual supports” for individuals with autism.

The guide is interfaith, with short articles from members of Christian, Jewish, Hindu and Muslim communities. The stories share the experiences, both positive and negative, that families with autism have had with their own faith communities. It’s written by clergy, parents, professional experts on autism, religious educators and best of all, it includes some first-person accounts by individuals with autism about their experiences in religious settings.

The Autism and Faith Task Force of New Jersey’s Center on Services for the Autism Community (COSAC) helped develop this guide, and residents of New Jersey can get their first copy free of charge. For others, the guide costs $5. More information about ordering Autism and Faith: A Journey into Community is available from the Elizabeth M. Boggs Center on Developmental Disabilities.

Autism worries? AutismCares

by Patricia Wright

The response to Beth Finke’s blog about families with autism having lower incomes has been humbling. As a professional working in autism service delivery I am well aware of the ADDITIONAL expenses families incur when they have a child with autism. Therapies are expensive, specialized childcare may be necessary, adaptive equipment is costly … when families with autism have fewer funds to draw on, it just adds to the challenge of caring for a child with autism.

AutismCares is stepping up with “Family Support Awards” to help families with autism. From their website:

Family Support Awards

AutismCares provides Family Support Awards for the costs associated with housing, insurance premiums, medical care, prescriptions, daycare, automobile repair, funeral expenses and other items or events for eligible families on a case-by-case basis. Payments are made directly to the vendor providing the services.

Family Support Awards will not exceed $1,500 per family. The support is modest, but clearly this group is attempting to address the needs so eloquently portrayed by the number of respondents to Beth’s blog.

Three cheers for autism program innovation

by Erin Rogers

Last month at the Easter Seals Training Conference I had the great honor of accepting an award for my affiliate’s expansion of comprehensive services for children and families living with autism. The award is the Lou Lowenkron award for Program Innovation, and it’s given to one Easter Seals affiliate staff person each year.

They say it takes a village to raise a child, and when a child has a developmental delay or disability, Easter Seals Peoria-Bloomington is a trusted resource in that village. Our affiliate is made up of gifted, dedicated and innovative therapists who recognize the needs of our children and families, and then find ways to meet those needs.

So while I’m humbled by the recognition bestowed upon me, I want to make it known that I alone accomplish little. It is only through our strong, committed and innovative team that we continue to grow and meet the ever-expanding needs of those we enthusiastically serve.

Special moms celebrate Mother’s Day too

by Beth Finke

Last May I published a blog about Mother’s Day Week, and that post seems just as relevant this year as it was in 2007. And so … I’m posting a link to it! Happy Mother’s Day Week to all you special moms!

CVS Caremark All Kids Canâ„¢ grants help families with autism

by Beth Finke

The Easter Seals 2008 Training Conference Awards Banquet was Monday night, and man, I’m still stuffed.

Still happy, too. Here’s why: In addition to the well-deserved awards Easter Seals gave out to individuals at the dinner Monday night, CVS Caremark Charitable Trust awarded $350,000 in grants to different Easter Seals autism programs across the country. This means the Trust has now donated a total of $1 million to support Easter Seals autism services nationwide.

The grants awarded Monday night are part of CVS Caremark’s signature program, CVS Caremark All Kids Canâ„¢, a five-year, $25 million commitment to support children with disabilities. The 2008 CVS Caremark All Kids Can Fund recipients include Easter Seals affiliates in Columbus, Dallas, South Florida, Indianapolis, Los Angeles, Phoenix, Pittsburgh, Raleigh, Topeka and Westchester County. Children with autism — and their families — will benefit from feeding programs, specialized summer camps, weekend respite experiences, inclusive childcare, therapeutic and medical rehabilitation services and more.

Over the last 20 years, we’ve seen a dramatic increase in the number of children and adults with autism we serve at Easter Seals. Although autism spectrum disorders are baffling and lifelong, they are treatable. If you read the comments to my blog about families with autism earning lower incomes, you’ll see that every family living with a person who has autism faces unique challenges. There is an urgent need for increased funding and services — that’s why it was so wonderful to be there Monday night to witness the generosity of CVS Caremark’s Charitable Trust.

No-brainer: families with autism end up with lower incomes

by Beth Finke

The results of a study in this month’s Pediatrics journal will come as no surprise to those of you raising children with autism. The study surveyed the parents of 11,684 school-aged children with autism. It found that on average a household with a child with autism makes $6,200 per year less than an average family where the parents have similar careers. If you like to think in percentages, let me put it this way: parents of children with autism earn 14% less than parents of children without autism.

This seems like a no-brainer to me. Our son has significant physical and mental disabilities. Gus is 21 years old now and lives in a group home. While we were raising Gus at home, my husband and I often stayed in jobs and locations for less pay due to Gus’ needs. And it wasn’t exactly easy finding day care for Gus while we worked. Depending on how Gus was faring, we would cut back work hours, give up fulltime jobs and sometimes stop working altogether to care for him.

I’m not complaining. We love Gus, and we miss having him at home. I’m just trying to explain why the results of this study seemed so painfully obvious to me.

Childhood autism is associated with a substantial loss of annual household income. This likely places a significant burden on families in the
face of additional out-of-pocket expenditures.

Like I said — a no-brainer.

What’s with the rapid rise in autism?

by Lisa Tate

Is the rise in autism due to better diagnosis? Heightened awareness? Or is there a genuine increase in incidence? As a Speech-Language Pathologist, I’m often asked those sort of questions. When we don’t know what causes autism, these can be difficult questions to answer. So it was good to read a press release about an expert doing new research on the rise in the incidence of autism.

The press release reports that Professor Dorothy Bishop, a Welcome Trust Principal Research Fellow at the University of Oxford, led a study revisiting 38 adults who had been diagnosed with developmental language disorders as children. These adults are now between the ages of 15 and 31, and none of them had been given an autism diagnosis.

Professor Bishop and colleagues looked at whether they now met current diagnostic criteria for autistic spectrum disorders — either through reports of their childhood behavior or on the basis of their current behavior.

These were children that people were saying were not autistic in the 1980s, but when we talk to their parents now about what they were like as children, it’s clear that they would be classified as autistic now. Criteria for diagnosing autism were much more stringent in the 1980s than nowadays and a child wouldn’t be classed as autistic unless he or she was very severe. Now, children are being identified who have more subtle characteristics and who could in the past easily have been missed.

Professor Bishop cautions against using the results to suggest that the prevalence of autism is not genuinely rising. She states:

We can’t say that genuine cases of autism are not on the increase as the numbers in our study are very small. However, this is the only study to date where direct evidence has been found of people who would have had a different diagnosis today than they were given fifteen or twenty years ago.

Results will be published this month in the Journal of Developmental Medicine & Child Neurology.