Keeping health care coverage affordable for people with autism

by Katy Beh Neas

Last week the House of Representatives passed legislation (H.R. 2) that seeks to repeal the Affordable Care Act. Signed by President Obama last March, the Affordable Care Act provides protections for people with autism and other disabilities that have been noticeably absent in the insurance marketplace.

The Affordable Care Act has been in effect since September 23, 2010. Among other things, it includes provisions that require insurance companies to:

• cover children with disabilities and other pre-existing conditions
• allow young adult children to be covered by their parents’ policies until they reach age 26
• prohibit the use of lifetime limits

The bill to repeal now goes to the Senate, where it is highly unlikely that further action will be taken. Easter Seals will continue to monitor both the regulatory process and other legislative efforts to alter the Affordable Care Act.

It is vitally important to let our elected officials know the importance and impact of access to high quality and affordable health care coverage for people with autism and other disabilities.

Bridges to adulthood and employment

by Debbie Smith

Here at the Easter Seals Work Resource Center we are really looking forward to an upcoming visit by Peter Gerhardt. Dr. Gerhardt is coming to Cincinnati on February 11 and 12 to lead a couple of training sessions on transition and employment for adults with autism.

Peter Gerhardt is currently the Director of Education, Upper School, for the McCarton School in New York City. For many years he served as the President of the Organization of Autism Research (OAR).

Dr. Gerhardt has more than 30 years of experience utilizing the principles of Applied Behavior Analysis (ABA) in support of adolescents and adults with autism spectrum disorders in educational, employment, residential, and community-based settings. He is a recognized expert in this area and has testified before Congress on behalf of the needs of adults with autism. Information about the upcoming training sessions:

February 11-12
Great Oaks Career Center — Scarlet Oaks Campus
3254 East Kemper Road
Cincinnati, Ohio 45241-1582

Friday Workshop: “Successful Employment for Persons with Autism Spectrum Disorder”
February 11, 2011
1:00-4:00 p.m.

Individuals with autism spectrum disorder (ASD) have the ability and desire to work, but there are many challenges. This half-day workshop will focus on strategies to minimize or overcome many of these barriers in order to support successful employment for adults with ASD.
Cost: $40.00 for professionals, $20.00 for family members

Saturday Workshop: “Bridges to Adulthood for Learners with Autism Spectrum Disorder”
February 12, 2011
9:00 a.m.-4:00 p.m.

The transition from school services to adulthood can be particularly difficult for many adolescents with autism spectrum disorder (ASD). Transition planning for competent adulthood must look at the whole life of the person with ASD, including education, employment, community living, and meaningful integration into the community.
Cost: $75.00 for professionals, $30.00 for family members

Cost for both days: $100.00 for professionals, $50.00 for family members

Easter Seals Work Resource Center is generously supporting a large cost of this training. Autism Society Greater Cincinnati Chapter offers additional scholarship support for professionals and families, and information and applications can be accessed on the Autism Society Greater Cincinnati Chapter website. Peter is a very dynamic speaker, and his presentations are engaging, powerful and useful. To register, or if you want more information, contact Kay Brown at (513) 636-7616 or at kay.brown(at)cchmc(dot)org. We look forward to seeing you here in Cincinnati!

Learning fast: Autism in China

by Patricia Wright

The last blog post I wrote was published the day I left for China. I said then that I had a lot to learn from my counterparts in Anshan, and boy was I right!

I was In Anshan with the Five Project, a non-profit that has been promoting autism awareness and professional skill development in China since 1992. We spent two weeks providing professional development to an autism program providing service to children.

This trip gave me more opportunities to learn about autism intervention in China. The children typically enroll in a program for a relatively short period of time, often just three to six months. They go to sessions every day, and one of their parents or a care provider attends with them full-time. This means you are working with both the children and their attending parent.

Staff members at the Anshan program were eager to learn and were especially keen to know more about best practices and what they could do to ensure the best outcomes for the children. Together we made lots of changes to the learning environment and instructional practices.

We are only on site for a short period of time, so the consultation model is fast. When everyone works together the results are so rewarding. Changes are implemented within hours and the positive outcomes for the students are seen immediately.

The Anshan program had about 60 children enrolled while we were on site. The instructional team was amazing, working well into the night to develop materials we’d deemed necessary earlier that day.

Working internationally is always a privilege. Hard work and long days, but as you can see from this picture, we do have fun together, too!

Temple Grandin a real winner

by Beth Finke

You’ve probably already heard that Claire Danes won a Golden Globe Sunday night for best actress in a television movie. She won it for her portrayal of Temple Grandin in a bioflick of the same name.

While many people know that Temple Grandin has autism, what they didn’t recognize until seeing this movie is how much the Colorado State University professor has contributed to improving conditions at large livestock processing plants. Dr. Grandin truly is a remarkable woman, teacher, author, advocate and a revered academic.

Heather Pint published a book review here of Temple Grandin’s memoir, Thinking in Pictures: and Other Reports from My Life with Autism. In her review, Pint described Grandin’s early years as isolating, particularly since autism spectrum disorders were fairly unknown at the time. During an interview on Fresh Air, Terry Gross asked Grandin what it was that prevented her from being isolated like that her entire life. Grandin’s answer? Early intervention. “I started speech therapy when I was two-and-a-half years old.”

Patricia Wright, the National Director of Autism Services here at Easter Seals, wrote a blog post about the merits of early intervention.

Autism affects everyone differently and involves challenges in communication, social skills, and behaviors. If you’re worried your child may have autism — or feel something just isn’t right — follow your instincts. Don’t assume that your child will catch up. Share your concerns with your pediatrician. Look into your state’s early intervention program. Get a diagnosis. And seek support from community service and treatment providers like Easter Seals.

I’m sure Temple Grandin would agree with Patricia! If you missed the Fresh Air interview you can access it as a Fresh Air archived podcast or via iTunes. I congratulate Claire Danes for her Golden Globe, and I especially congratulate the real winner: Temple Grandin.

D.C. internships for college students with disabilities

by Beth Finke

A young friend of mine is applying for a 2011 AAPD Washington DC Summer Internships Program for Students with Disabilities. I just finished writing a reference letter for her, and as I hit the “send” button it dawned on me. I should share this info with my Easter Seals and autism blog readers!

AAPD stands for the American Association of People with Disabilities, and college students who have autism certainly qualify for their summer internship program. From the AAPD web site:

AAPD’s Summer Internships Program offers college students, law students, and other graduate and professional students with disabilities the opportunity to work in public service for ten weeks on Capitol Hill and at federal agencies. This ten-week experience gives interns the opportunity to gain invaluable hands-on experience in government, including insight into government office operations, public policy development, law-making and research, and constituents’ roles in the legislative and administrative processes. Interns receive a stipend, travel to and from D.C., and fully-accessible housing.

The internships are available to college students (including law students and other graduate and professional students) who self-identify as an individual with any type of disability — including autism. Applicants are not required to disclose their specific disability, but the AAPD assumes that by applying for their internship program you consider yourself a person with a disability. Again, from the AAPD web site:

PLEASE NOTE: This is a program run specifically for students with disabilities by the American Association of People with Disabilities (AAPD), the nation’s largest cross-disability membership organization. Those selected for this program will be involved in various disability-focused activities and associated with AAPD and fellow Interns with all types of disabilities throughout the program.

If you’re interested in applying for a 2011 AAPD Washington DC Summer Internship, you need to act quickly: the deadline for applications is next Monday, January 24. Good luck!

Sharing Easter Seals’ message with Congress

by Katy Beh Neas

The 112th Congress was sworn in on Wednesday, January 5, 2011. Soon after that, Easter Seals government relations staff began to deliver welcome packets to each member’s office to schedule meetings, share our mission and legislative goals, and offer Easter Seals as a resource on policy issues affecting constituents with autism and other disabilities.

One policy issue on our minds right now is The Affordable Care Act. The House of Representatives had hoped to vote on legislation to repeal the Affordable Care Act early in January. Following the tragic shooting in Tucson, Arizona on January 8, the vote may be pushed back, but is likely to be held in the next few weeks. This law includes a provision that prohibits insurance companies from excluding coverage of pre-existing conditions for children. Tell your representative to vote NO on H.R.2 and not take away the guarantee of health insurance to children with autism and other disabilities.

Autism dogs have all the luck

by Beth Finke

One month ago this week I returned home to Chicago with a new Seeing Eye dog. Harper is my third Seeing Eye dog, and going through training for the third time gave me an opportunity to think of some things about service dogs that hadn’t occurred to me before.

The term “service animal” was first used in the Americans with Disabilities Act in 1990. the term described an “animal individually trained to provide assistance to a person with a disability.” At the time, Seeing Eye dogs for the blind were the most familiar type of service animal. That was twenty years ago, though. Over the years, service dogs have been trained to perform a variety of tasks, including alerting people with hearing impairments, carrying and picking up things for people with mobility issues, and preventing a child with autism from running away. They are all dogs, and they all help people who have disabilities, but the similarities end there.

Trainers at the Seeing Eye try to teach dogs to control their instincts. It’s virtually impossible to eliminate them completely, though, and unfortunately most instincts are detrimental to good guide work. So it’s up to us as guide dog users to discipline our dogs if they chase, scavenge, sniff, protect … or socialize. My Harper’s weakness is that he likes to socialize too much. This got me to wondering: do autism assistance dogs have to play by the same rules as guide dogs? Can people with autism allow their assistance dogs to be pet by others, for example?

I Contacted Assistance Dogs for Autism for an answer. Jason Purgason (Training Director at Assistance Dogs for Autism) told me they generally encourage people to pet autism assistance dogs. Even when they’re working. “These dogs are often a ‘social draw’ for children who would otherwise not have interactions with strangers,” he explained.

Hope Harper doesn’t get wind of this. He may put in for a career change!

Mary Alice D’Arcy: Cheers to 30 years

by Crystal Ward

I am so pleased to introduce Andrea Knudsen as a guest blogger today. Andrea’s son receives services here at Easter Seals DuPage and the Fox Valley Region, and she wrote this wonderful tribute to our retiring president and chief executive officer Mary Alice D’Arcy.

Retiring Easter Seals CEO leaves a lasting legacy

By Andrea Knudsen

Mary Alice D’Arcy, the president and CEO of Easter Seals DuPage and the Fox Valley Region, was quoted in a Daily Herald story last week about her upcoming retirement, and her words explain why families here in the DuPage and Fox Valley region love her — and will miss her — so much.

“We are a tiny slice of our families’ lives and yet we are their second family. That’s what they call us,” D’Arcy said. “They can take a deep breath and feel part of a broader support system, of people who understand. They don’t have to explain their lives or their kids’ lives. They can just relax, relax and learn.”

Mary Alice began her career here at Easter Seals DuPage and the Fox Valley Region 30 years ago at an organization we’d barely recognize today: DuPage Easter Seal Treatment Center, a little red schoolhouse with 12 employees serving 125 kids. Mary Alice became CEO in 1995 and around that time the Board of Directors determined the need for a larger facility. By June of 1999 the new facility was completed, and 15 years later, the Easter Seals we call “home” fills 31,000 sq-ft. and includes 130 employees serving over 1000 children and young adults each week.

Through it all, Mary Alice has remained both a spokesperson for staff and clients and their families, as well as a guide for people looking for ways to give and participate in Easter Seals’ mission. She has been a constant voice, communicating Easter Seals’ capacity as resource, partner and problem solver in the state of Illinois, where funding for people with disabilities is last in the nation.

Under Mary Alice’s leadership, Easter Seals staff navigated the transition as educational opportunities expanded, in the 1970s when the State of Illinois began to include preschool programs for children with disabilities; then in the 1980s when mainstreaming began in public schools. Mary Alice has also witnessed the evolution of knowledge about sensory-based needs such as autism that were previously identified as behavioral issues or under the broad stroke of “retardation.”

Every day brings something to be proud of, she said. “I’ve been here long enough to see kids’ successes: living independently, having families of their own, working, teaching. I’m proud of the stories that bring you full-circle.” Mary Alice’s retirement will be an evolution, likely including public affairs work and some role in development. She said she looks forward to the opportunity to enjoy free time with her husband. “We are healthy, we want to give back. It’s all a gift.”

You are a gift, Mary Alice. Best wishes for a happy, healthy retirement.

His twin sister has autism

by Beth Finke

I am a huge fan of Fresh Air on National Public Radio, so just imagine how my ears perked up when I heard this introduction the other day:

This is FRESH AIR. I’m Terry Gross. My guest, Allen Shawn, has a fraternal twin sister, Mary, who is autistic. He’s often wondered what her experience of the world is, what she sees, hears and feels. Allen and Mary Shawn were very close until the age of eight, when she was institutionalized. His new memoir, “Twin” is about how Mary’s presence and absence affected his life.

Allen Shawn is a composer. He also happens to be the son of the late William Shawn, editor-in-chief of The New Yorker from 1952 to 1987. Allen’s memoir is called Twin but from this interview it seems the book deals as much, or more, with Allen’s father as it does with Allen’s twin, Mary. Maybe that’s because, as Allen Shawn admitted in the interview, he still is reluctant to talk about his early life with his twin sister, and didn’t see any of her behavior as odd when she was still living at home. From the interview:

To be honest, I may have written this book, but I still find it very difficult to talk about as something strange, and I feel a great deal of shyness about the subject.

If you missed the interview, you can still hear it online. See what you think.

Cheers to 23 states with autism health insurance legislation

by Denise Rozell

Here’s some good news to start the New Year off right: check out our state autism profiles and you’ll see that Starting January 1, new laws in Iowa, Kansas, Maine, Massachusetts, Missouri, Nevada, Kentucky and New Hampshire now require health insurance plans to cover autism diagnosis and treatment. That means that now 23 states have passed autism insurance legislation — a reason to celebrate!

And while you’re there on the State Autism Profiles page, you can check out how the 50 states, District of Columbia and Puerto Rico are responding to the needs of individuals living with autism spectrum disorders. In addition to reporting on state health insurance coverage, the profiles offer information on the following categories:

• Demographics
• State task force
• Medicaid, if an autism-specific waiver is available or application pending
• Education and, if applicable, education programs and activities
• Other state resources, if applicable
• State legislative calendars
• Sponsors of autism legislation

This information is helpful to parents and other advocates when it comes to supporting autism services in your state or when writing grants and preparing for the 2011 state legislative sessions. A great, great resource for the new year.