Easter Seals testifies on health care reform before Senate committee

by Katy Beh Neas

Last Thursday Easter Seals staff testified before the Senate Committee on Health, Education, Labor, and Pensions (HELP), telling them that meeting the needs of people with autism and other disabilities is an important component of health care reform.

Mary Andrus, Easter Seals Assistant Vice President for Government Relations and Co-Chair of the Consortium for Citizens with Disabilities’ Health Care Task Force, told committee members that, “an essential element of health care reform is ensuring that vulnerable populations have access to coverage that meets their care needs.” Andrus also stated that, “for persons with disabilities and chronically ill older Americans — arguably the most vulnerable populations in the nation — long-term services and supports are their primary unmet care need, and are critical to promoting health and preventing illness.”

Easter Seals believes that health care reform must guarantee that all Americans, including people with autism and other disabilities, have access to high quality, affordable health care that meets their individual needs.

What can you do? Contact your lawmakers and urge them to support health care reform legislation and to support inclusion of long term services in health care reform.

Hope for adults with autism

by Beth Finke

You know the prevalence of autism statistic — that one we hear all the time about one in 150 children having autism? Well, until I read Patricia Wright’s Advancing Futures for Adults with Autism post last week, I just assumed that number had been measured fairly recently. But it turns out that the original findings from the Centers for Disease Control and Prevention (CDC) are from the year 2000. Nine years ago!

As Patricia points out, those one in 150 children diagnosed in the year 2000 are now turning into one in 150 adults with autism. The good news is that they’re following in the footsteps of some truly remarkable people. The Stories of Hope section of our Web site was just updated with some new inspiring profiles. Take a few minutes to read some great stories about adults currently living with autism — it’s always good to hear real, human stories in addition to statistics!

iPhone app for people with autism

by Beth Finke

Our son Gus doesn’t talk. I can tell if he’s hungry or thirsty by the way he smacks his lips, and he can grunt a certain way to make some of his needs known. Otherwise he expresses desires by going to the thing he wants — heading to the door when he’d like to go outside, or pushing on the piano lid when he feels like playing duets with me.

When Gus was little, his elementary school sent him home with a picture-communication-board-type thing for us to use on a trial basis. If Gus touched a picture of a cookie on the board, for example, the board would say “I’d like a snack.” The machine was about the size of a cafeteria tray and was a bit unwieldy. Once we found out how expensive a machine like this can be — a few go for $8,000 to $10,000 — we decided to stick with Gus’ grunting and lip-smacking methods.

So I was interested to hear about a new application that people with autism and other disabilities are using to communicate — Proloquo2Go is an application you can download from Apple’s iTunes onto an iPhone or iPod Touch. The total cost of the app: $149.99.

A story in USA Today describes how a 7-year-old boy with autism uses the iPhone his mother, Leslie Clark, bought for him at a local store.

A month later, JW goes everywhere with the slick touch-screen mp3 player strapped to his arm. It lets him touch icons that voice basic comments or questions, such as, “I want Grandma’s cookies,” or “I’m angry — here’s why.” He uses his “talker” to communicate with everyone …

Penn State doctoral student Samuel Sennott is a co-developer of the app. In the article, Sennott points out that using an iPhone to talk to friends provides a hip, cool way to communicate — especially important to children with autism, who can find it so difficult to try and fit in with their peers.

Using the iPhone and Touch allows developers to democratize a system that has relied on devices that were too expensive or difficult to customize, Sennott says. “I love people being able to get it at Best Buy,” he says. “That’s just a dream.”

Advancing Futures for Adults with Autism

by Patricia Wright

I recently overheard someone say, “it took us 20 years to figure out what to do in early intervention and autism — we don’t have that kind of time when it comes to adults with autism.” It’s true. We don’t have time. The much-lauded statistic of “1 in 150 diagnosed” is usually accompanied by a picture of a young child’s face.

Thing is, though, the data for 1:150 was collected nine years ago on a sample of eight year olds — that figure represents individuals who are now 17 years old! These 17-year-olds will be exiting the educational system very soon. They’ll be joining many other adults with autism already challenged by our lack of services and supports for adults.

Easter Seals is taking action to address this need through participation in Advancing Futures for Adults with Autism (AFAA). AFAA is a national consortium seeking to create meaningful futures for adults with autism that include homes, jobs, recreation, friends and supportive communities. This unique national consortium has united to set national priorities for adults on the autism spectrum and to transform public policy and programming for teens and adults with autism spectrum disorders.

In January, AAFA held a Think Tank. Nationally recognized experts in a variety of fields (e.g., individuals with autism, program operators, university professors, public policy authorities and specialists from both the public and private sectors) met to begin addressing the issue of autism and adulthood. The summary report from that think tank is available at the AFAA web site, and national town halls are next — Americans will come together across at least 15 cities on November 13, 2009 to create a policy agenda for addressing the needs of adults with autism. Over 1,000 people — including caregivers, advocates, elected officials, family members, and adults with autism — will join the discussion to make recommendations on this important issue. The event will be orchestrated from a central hub in Chicago and available nationally via webcast. The unprecedented scale and diversity of the AFAA National Town Meeting will attract attention to the issue and build momentum.

Adults with autism can — and do — lead meaningful lives. Easter Seals believes that with proper supports, adults with autism can all live, learn, work and play in their communities. AFAA is helping to make this happen.

Man with autism finds employment in struggling economy

by Julia McCollum

With all the news of the national unemployment rate nearing 9%, some may forget that those numbers are significantly higher for individuals with disabilities. The United States Department of Labor reports that, of those people with disabilities who say they are able to work, only 56 percent are working (PDF) — the rest are looking for jobs. With a weak economy, those numbers are only expected to get worse.

KXAN-TV here in Austin brought some sunshine to this cloudy outlook this week with a feature story about David Kennedy.

David is a very friendly young man of twenty-two years. He loves to listen to and play music on the keyboard, he likes talking to his friends and teachers in the community, and he enjoys meeting new people and helping them, especially while at his job. David also has autism.

From the KXAN-TV feature :

“I love going to work,” said David. “My job is awesome.”

He works at a South Austin H-E-B check-out line. It is a job he got with the help of a school program and one he has been able to maintain through a support system with Easter Seals Central Texas.

Easter Seals not only serves as a liaison between David and his employer but also as a search tool to help people like David find work.

Easter Seals Central Texas has been working for the past decade to aid adults with disabilities and other barriers gain employment skills and access opportunities to lead more independent lives. David has been working at the regional grocery store chain H-E-B for more than a year now. He proudly displays his “one-year badge” and is eagerly waiting to get his next badge in 2010. His mother, Barbara, is one of his greatest advocates and credits the support she has received at Easter Seals Central Texas for contributing to her son’s growing independence and sense of pride.

The Easter Seals Living with Autism Study results revealed that 76% of parents of children with autism are concerned about their children’s future employment. Finding employment for individuals with disabilities is always a challenge, but there is much we can each do to help open more doors to employment. Patronize companies known to hire individuals with disabilities. Tell employers how much you value their employees with disabilities. And if you are an employer, discover your nearest Workforce Development Program and learn how you can help support this very important and wonderful resource.

Read Julia McCollum’s biography.

58-year old man with autism communicates through art

by Beth Finke

Here’s a quick addition to Paula Pompa-Craven’s post about finding housing for adults with autism. An article in the Marina del Rey Argonaut touts Pierre Dumas, an artist in southern California who has autism.

Pompa-Craven says interacting with his fellow artists at the art wall has done wonders for Dumas’ development.

“Being part of a community can be very therapeutic,” she said. “Pierre has grown by leaps and bounds. His eye contact, an important sign for someone with autism, has increased dramatically, and part of that is due to his family support and the opportunity to express himself artistically.”

Another huge part of Dumas’ growth is due to his living situation. Dr. Paula Pompa-Craven, Psy.D., is Regional Vice President at Easter Seals Southern California, and that affiliate was instrumental in moving Pierre Dumas from a more controlled environment in Costa Mesa to a group home in Culver City.

For the last three years, Dumas has lived with two other men, and according to those who know him best, he has progressed at a rate that no one had previously thought possible.

Yvette Beaird, Dumas’ sister, is a witness to those changes.

“He has changed so much,” she said. “He can prepare sandwiches for himself and do certain chores, which we thought would probably never happen.”

Prior to arriving at the home in Culver City, he was living in Costa Mesa in a more controlled environment. But since he moved to his new residence and began visiting the art walls, Dumas’ social skills have improved by leaps and bounds, says Beaird.

In Monday’s post, Paula said that Easter Seals Southern California has assisted many adults with autism and other disabilities from state-run institutions into community-based living arrangements. She said they’d found that “people often flourish, beyond the expectations of even their family members, in a home setting with enhanced staffing support.”

Just thought I’d link to this story so you could read about one of those adults who has flourished. Keep up the great work, Easter Seals Southern California!

Housing for adults with autism

by Paula Pompa-Craven

An article in Time Magazine last week called Growing Old with Autism described some of the struggles family members go through when seeking support for their loved one with a significant disability. The piece was adapted from a book called Boy Alone: A Brother’s Memoir, written by Karl Taro Greenfeld about life with his brother Noah.

When I was writing my book about my brother, Boy Alone, I wished I had a story of hope and salvation. It is miracles that sell books. There seems to be an insatiable demand for narratives that end in triumph over an affliction: the cripple walks, the mute speaks, the autistic boy laughs and hugs and cries.
We hunger for that uplifting journey, as opposed to the cruel odyssey I had to tell. What did I have to offer? My adult brother, still autistic, still nonverbal, still lost. As much as I hope that all the autistic boys and girls will get better, and as much as I can encourage their families to fight with all the hope they have, I also know that they will not all recover. The boy or girl will grow up, and there won’t be a miracle; instead there will be an effort, something like what my family goes through every day, to figure out what to do.

At Easter Seals Southern California, we are directly involved in moving adults with autism and other disabilities from state-run institutions into community-based living arrangements. We have assisted several adults with autism, many with severe disabilities such as the ones described in the article. What we have found is that people often flourish, beyond the expectations of even their family members, in a home setting with enhanced staffing support. We have also learned to celebrate the smallest milestones which are often overlooked.

Individuals are supported in all skills of daily living including grocery shopping, cooking and cleaning. Some require only a picture calendar to remind them of the day’s activities while others require hand-over-hand support.

Regardless of support level, ALL are involved in activities of daily life. The respect that is given to any human being when you take the time to teach rather than do, is a value and philosophy that we embrace.

Want to volunteer? We’ll help find an opportunity near you!

by Beth Finke

President Obama signed the Edward M. Kennedy Serve America Act on April 21, and since then more people are becoming interested in volunteering. From an AARP Bulletin Today article:

Obama noted that service to others—he was a community organizer in Chicago before entering politics—was instrumental in launching his career. “I would not be standing here today were it not for the service to others and for the purpose that service gave my own life,” Obama said.

He then issued his own call to service for Americans, echoing the call first issued by Kennedy’s brother, President John F. Kennedy, in 1961. “We need your service, right now, in this moment in history,” Obama said. “I’m asking you to help change history’s course. Put your shoulder up against the wheel. And if you do, I promise you—your life will be richer.”

Easter Seals has always offered unique and meaningful opportunities for volunteers – you can use our online search to find a rewarding experience near you. Nearly 90 years ago, Easter Seals founder Edgar Allen said, “your life and mine shall be valued not by what we take … but by what we give.” Those words still ring true today.

Whether it’s performing office work, volunteering at an event or camp, or helping in another way, you can make a difference in the lives of people with autism and other disabilities. And like President Obama says, once you start volunteering “your life will be richer.”

Thanking Newsweek for providing a voice for people with autism

by Patricia Wright

Before heading off for a three-day weekend last week, I wrote a letter to the editor at Newsweek thanking the magazine for publishing Claudia Kalb’s article, Erasing Autism. The article featured 21-year-old Ari Ne’eman. Ne’eman has Asperger syndrome, and he founded the Autistic Self-Advocacy Network (ASAN) — a nonprofit organization run by and for people with autism.

He certainly puts up a fight. Ne’eman is officially studying political science at the University of Maryland, Baltimore County, but he also runs the Autistic Self-Advocacy Network, a nonprofit he founded in 2006, the year after he graduated from high school. The task he has taken on is daunting and controversial: he wants to change the way the world views autism. Autism is not a medical mystery that needs solving, he argues. It’s a disability, yes, but it’s also a different way of being, and “neurodiversity” should be accepted by society. Autistic people (he prefers this wording to “people with autism,” a term many parents use, because he considers the condition intrinsic to a person’s makeup) must be accommodated in the classroom and workplace and helped to
live independently as adults—and he is pushing to make this happen for everyone on the spectrum. They should also be listened to. “We’re having a national conversation about autism without the voices of people who should be at the center of that conversation,” he says.

Quality of life should be the message regarding autism. Quality of life can be measured by the ability to make choices — choices about where to work, where to live, how to recreate and with whom to spend time. Given appropriate services and supports, every person with autism can contribute to their life choices.

Quality choice-making requires that the individual with autism be involved. Every individual with autism must be afforded the dignity of making their life choices; individuals with autism must be at the table if their voice is to be heard. The social service community and society at-large must change to ensure that decisions are not being made for individuals with autism, but instead are being made with individuals with autism.

Mr. Ne’eman states his feelings on this subject eloquently and strongly — I wrote that letter to Newsweek’s editor to thank them for providing a voice for individuals with autism.

Safeway earns Easter Seals’ All-Time Top Corporate Partner designation

by Beth Finke

Easter Seals recently designated Safeway Inc. its All-Time Top Corporate Partner. Man oh man, do they deserve that honor!

In their fundraising campaign during April (Autism Awareness Month), Safeway invited customers to support Easter Seals services for people with autism and other disabilities at checkout. In just one month, Safeway raised $8,824,141! Safeway employees also raised an additional $1.4 million through local market events, golf tournaments, galas and fundraisers—bringing the company’s 2009 grand total for Easter Seals services to $10.2 million.

And here’s the cool thing –Safeway puts its money where its mouth is. Safeway employs more than 10,000 adults with disabilities. You read that right. They hire more than 10,000 adults with disabilities. There are over 1,700 Safeway stores across the United States and Canada, operating under various brand names including Safeway (East Coast, Seattle, Portland, Northern California, Phoenix and Denver), Vons and Pavilions (Southern California and Nevada), Dominick’s (Chicago), Randalls and Tom Thumb (Texas), Genuardi’s (Philadelphia) and Carrs stores (Alaska). Look around the next time you are shopping at one of these stores – it’s likely you’ll find an employee there with a disability. What a welcome sight!

I can tell you firsthand — when you have a disability, it is extremely difficult to convince employers to hire you. Safeway’s commitment gives many adults with autism and other disabilities a career and a means to live independently. Larree Renda, Safeway Executive Vice President and Chair of the Safeway Foundation, says it best: “Most important, is the message that people with autism and other disabilities are valuable members of the workforce—even in these tough economic times. Too many businesses don’t take the risk in hiring people with disabilities. At Safeway we’ve embraced it, and have had great success.”

THANK YOU Safeway!