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.

Wanted: More childrens books about kids with disabilities

by Beth Finke

An article in Disability Scoop refers to a study reported in the journal Education and Training in Autism and Developmental Disabilities. The study found kids with disabilities are underrepresented in children’s literature.

In an analysis of 131 winners of the Newbery Medal and Honor — considered the top prizes for children’s books — researchers found that just 31 included a main or supporting character with a disability between 1975 and 2009.

One of my favorite books reviewed here on the Easter Seals and autism blog is Cynthia Lord’s Rules, an award-winning fictional children’s book that looks at autism from an older sister’s perspective. After reading the article in Disability Scoop, however, I realize it suffers the same plight as so many other children’s books about disabilities.

What’s more, characters with disabilities were most likely to be supporting characters and were often used to boost the emotional growth of those without disabilities rather than to develop in their own right, the study finds.

Let’s hope this study serves as a wake-up call to children’s book authors and publishers. Maybe in 2011 we’ll see more children’s books focusing on kids with disabilities for who they are, rather than focusing on the limitations of their disabilities.

More to learn about autism in China

by Patricia Wright

I have blogged before about how lucky I am to get to work internationally. My good fortune continues — I head back to China today for two weeks. The Five Project has invited me to come and work with them to provide teacher training.

The Five Project and its team members have been promoting autism awareness and professional skill development in China since 1992. Their two decades of work have resulted in wonderful relationship building and knowledge, which all makes my work a lot easier!

We’ll be heading to Anshan this trip, working again at a school for young children with autism. One of the interesting components of treatment for children with autism in China is that in most environments parents attend the program with their child. This provides a great opportunity to help parents learn about effective treatment, but it can also create challenges when it comes to independence. When a parent is always there to help, it can be difficult to learn to do things for yourself.

Parents attending the program with their child is just one example of the many, many unique aspects of working in another culture. I feel a little bit more prepared this time, having already had an opportunity to work in China once before. But I know this trip is sure to be full of lots of learning, especially on my part. It is a huge privilege to work with the Five Project. Stay tuned to the Easter Seals and autism blog — I’ll keep you posted on the happenings in Anshan during my trip!

Public policy year in review

by Katy Beh Neas

2010 was a landmark year of public policy achievement. People with autism and other disabilities made significant gains in health care, cultural acceptance, and telecommunications. Here are just a few of our successes:

• Thanks to the Patient Protection and Affordable Care Act, children with disabilities cannot lose their health insurance coverage because of a pre-existing condition. As a result, families no longer have to worry about whether they can afford the services their child needs, whether they have to secure a second mortgage or whether they will have to declare bankruptcy because of medical bills not covered by insurance.
• Thanks to Rosa’s Law, children with intellectual disabilities now live in a world where the term “retarded” is no longer acceptable.
• Thanks to the Twenty-First Century Communications and Video Accessibility Act of 2010, people who are blind will be able to rely on smart phone technology and watch prime time video-described television.
• Congress maintained funding for the majority of federal programs that benefit people with disabilities.

In July we celebrated the 20th anniversary of the Americans with Disabilities Act (ADA) and the 35th anniversary of the Individuals with Disabilities Education Act (IDEA). As we look forward to next year, our agenda of ensuring equality and opportunity for children and adults with autism and other disabilities continues.

Our efforts will focus first on educating the nearly 100 new members of the House of Representatives and Senate about Easter Seals, the needs of people with disabilities and their families, and the critical role that government plays in their lives. These efforts will be closely coordinated with affiliates. In addition, we will be working with the US Department of Health and Human Services on the implementation of the Affordable Care Act and begin planning the celebration of the 25th anniversary of the federal early intervention program for infants and toddlers with disabilities and their families.

Please accept the very best wishes for the New Year from all of us at the Easter Seals Office of Public Affairs.

Police CARE about people with autism

by Debbie Smith

Here’s a story from the Northwest Press to warm your hearts for the new year. The Children And Residents Encounter (CARE) program was the brainchild of police officer Nick McCarthy, who has a child on the autism spectrum. CARE invited residents with special needs and their caregivers to an open house to meet officers.

Colerain Township Police Officer Nick McCarthy is spearheading the project. The program includes a voluntary registry of persons with special needs and cues to help officers who might come in contact with them as to how to best approach and offer help.

At the open house, residents with autism and other disabilities had a chance to meet and be more comfortable with police officers and fire fighters. They wore a variety of uniforms so the special needs residents would be familiar with whatever uniform an officer or firefighter might be wearing. All the vehicles were on display, too!

Elizabeth Schaub, whose 6-year-old son Cameron Vearil is diagnosed on the autism spectrum, said the program gives her son a chance to see the vehicles and officers up close and build a rapport.

Cameron’s mom said that having him be familiar with the officers, the vehicles and the uniforms is a great idea. The event was incredible, and it gave parents and caregivers a chance to ask questions about the program and to register for CARE. About 80 people were there to take it all in.

Thank you, Nick. You’ve made a true impact on our community. Happy New Year from all of us at Easter Seals Work Resource Center!