Jim Williams, president and chief executive officer of Easter Seals, said, “Transportation is literally the link to schools, the work place, and every other destination in community life.”

Employment, recreation, education … accessing all of these experiences require transportation. One thing the group could agree on is that the current public transportation system has many barriers. Inaccessible fixed route systems, limited para-transit and a complete lack of resources in rural areas were all mentioned.

The people at this event were focused on solutions. Solutions such as incorporating transportation education into high school curriculum standards, providing sensitivity training to public transportation operators, and promoting self-advocacy skills throughout a student’s years in special education.

The conversation at the roundtable was just the beginning. This group and others will continue to work towards ensuring that youth with disabilities have the transportation they need to lead the lives they deserve.

I’ve always nodded and smiled the vendor’s way as we pass. Since I can’t see to read, though, I never bought one of his papers. Until last December, that is. I left Hanni at home that day to go Christmas shopping with a friend — crowds can be so fixated on shopping that they step on my Seeing Eye dog. I cabbed home on my own afterwards, and when I fumbled with my white cane at the curb I heard a familiar voice call out to me. “Want some help?” he asked.

It was the StreetWise vendor. I grabbed his arm, and from the way my hand pumped up and down as we plodded to my doorway I could tell he had a very bad limp. When we finally arrived, I held out a bill that had one corner folded and asked for a copy of StreetWise. “They only cost two dollars,” my helper said. “You’re giving me a five.”

“I meant to give you a five,” I said, showing him how I fold money to keep track of the denominations. “Thanks for the help. Merry Christmas!”

J.T. and I have been friends ever since. “Hello Mizz Lady!” he calls out to me as Hanni and I pass him in the morning. And if we go a different way, and we don’t pass him, J.T. notices. “I didn’t see you earlier,” he’ll say. “I was worried.”

Kristina Chew’s autism blog at change.org refers to a story in the July 16 issue of Disability Scoop that says more than 40 percent of the homeless population in the U.S. are people with disabilities. I wish I could say this statistic surprised me. If anything, I thought the percentage would be higher. Chew quotes from the 2008 Annual Homeless Assessment Report, which was issued by the U.S. Department of Housing and Urban Development.

Among adults, 17.7 percent of the U.S. population had a disability whereas an estimated 42.8 percent of sheltered homeless adults had a disability. A disability, particularly one relating to substance abuse or mental health issues, can make it difficult to work enough to afford housing.

The report points out that people with disabilities are an even higher share of the homeless population than the people who are poor. This suggests that people with disabilities face additional difficulties — more than those who are poor — when it comes to accessing permanent housing.

People with disabilities may have difficulties searching for a unit or finding a landlord willing to rent to them. Their disability may make it less easy to accommodate them without adaptive supports.

The one statistic from this report that did surprise me was this one about Supplemental Security Income (SSI) and Social Security Disability Income (SSDI). I didn’t realize SSI payments fell so far below the poverty level.

The average annual SSI payment is about 44 percent below the poverty level, and thus people with disabilities who lack a sufficient work history to qualify for SSDI—common among people with severe mental illness or substance abuse issues — are more susceptible to deep poverty.

Chew notes that the inability to work (or not being given the opportunity to work regardless of one’s skills) often puts the price of housing out of reach. This is a scary thought for those of us who have disabilities, and especially for people who have disabilities that are less obvious. Autism, for example. No wonder we read so many stories about adults with autism still living at home with their parents. The homelessness blog at Change.org reviews the Homeless Assessment Report and suggests that what especially needs to be looked at is performance. “Certainly there are programs and initiatives set up,” says Kristina Chew. “But what is actually working, and what is not?”

The child born in 1980 – the year the American Psychiatric Association first added autism to its list of known mental disorders – is now nearly 30 years old.

The story tracks a couple of young adults with autism, including Eric Foley. Eric graduated from high school at age 20. He has lived with his parents Rob and Donna Foley ever since.

Rob and Donna have worked hard to leave Eric financially secure, but for Donna, the question of Eric’s future is not as simple as money.

“I’m 60. I’m not going to live forever,” Donna said. “Who is going to care for him? Who will treat him with tolerance and patience? Who will love him?”

The story credits our Easter Seals Living with Autism Study for providing quantifiable information about the services and supports that families living with autism desperately need.

In 2008, Easter Seals conducted a national study and found that 1.5 million Americans have an autism spectrum disorder. Twenty percent, or 300,000, of those people are age 22 or older.

The details of the study told a story that parents of children with autism have known all along.

• 76 percent of teenagers with autism over the age of 16 have never looked for a job.

• 79 percent of parents of children with autism are “extremely” or “very” concerned about their children’s future independence. Of “typical” parents, by comparison, 32 percent are equally concerned.

• 79 percent of adults with autism still live at home.

Easter Seals stands out as the nation’s leading provider of services and support for children — and adults — living withautism. The one consistent message Easter Seals hears from the families we serve — after the initial apprehension and anxiety of learning their child has autism — is an overwhelming concern about the life-long supports their child with autism may need. More than a generation ago, Easter Seals was front and center during the polio epidemic, working tirelessly to help children and adults with polio gain the skills necessary to live independently. And now, Easter Seals is working internationally to provide help, hope and answers to families living with autism today by delivering personalized services and treatments, as well as advocating with government to encourage financing for research and improved access to services and supports for people with autism.

Every family living with a person who has autism faces unique challenges. Early detection and intervention are the essential first steps. There is an urgent need for increased funding and services — especially for adults with autism.

We want to help change all of this and make a difference for families living with autism today. Help us change the lives of people living with autism by becoming a volunteer or donor — visit www.actforautism.org to learn more about autism, read the findings of the Easter Seals Living with Autism Study, and find services at an Easter Seals near you.

While Easter Seals has been facilitating day programs in the Milwaukee area for many years, we are new to the Kenosha area in terms of providing direct care. Susan Klawien coordinates our new inclusive Adult Day Center in Kenosha, and I am pleased to introduce her as a guest blogger. Susan will share her thoughts on how the program operates and the level of support necessary.

Adults with autism thrive at new inclusive adult day center
by Susan Klawien

Our Kenosha Adult Day Services program is set up in an organized fashion — from a daily schedule of activities, to the room layout. There are places for our participants to receive sensory breaks within the room. We also give our participants the opportunity to select the activities they wish to do. This promotes independence and choice.

Through our collaboration with the YMCA, we have jobs for the participants, such as folding towels and sheets, caring for the indoor plants in the fitness area, and planting seeds in the gardens. They also learn specific activities of daily living skills each day.

Being an inclusive environment at the YMCA helps our participants adapt to surroundings and changes. YMCA patrons and staff have been welcoming in their daily interactions. Children in the YMCA’s after-school, day care, and summer camp programs have been curious, but have also shown respect and understanding.

Communication is a big factor. Some of our participants understand through sign language or verbal cues, others use different methods. Board maker pictures of the daily schedule are on the wall, and we use a dry erase board to list activity options. The options are erased after completion.

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. Families living with autism need supports after their loved ones leave the school system. Providers need to prepare for the future strengths, needs, hopes and dreams of those individuals living on the spectrum.

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.

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!

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!

Though a December 2008 Easter Seals-sponsored study showed nearly 80 percent of surveyed families with a child with autism are extremely or very concerned about their child’s potential to achieve independence as an adult, occupational therapy practitioners can help. They can make a difference in the lives and futures of these children by identifying the early signs or indicators of autism spectrum disorder (ASD) so the family and child can then receive necessary support and services. Occupational therapy practitioners help children and their families participate in daily routines and promote their function when facing barriers or difficulties typically associated with this disorder.

“Occupational therapy practitioners assess the specific area or areas in which the individual is showing signs of ASD, and then shares that information with the parent or physician,” said Leslie Jackson, MEd, OT, project director of the Training Modules for Inclusive Early Care and Education at Easter Seals. “April, which is both Occupational Therapy Month and Autism Awareness Month, provides an excellent opportunity to educate the public about the important role the profession plays.”

The Easter Seals Living with Autism Study mentioned in that press release was funded by MassMutual, and pointed out the many needs of individuals and families living with autism across the lifespan. We all acknowledge serious gaps in services and lack of adequate funding for services — those gaps make it all the more important to know where help is available right now.

This month, the American Occupational Therapy Association web site features a talk I put together along with Janie B. Scott MA, OT/L, FAOTA, from Towson University. Our talk explains how occupational therapists help individuals and families participate in education, work, play and daily life by helping a person with the performance of daily life tasks.

Take a quick 15 minutes to listen to all the ways we can help — download a podcast of our talk about the role of occupational therapy in the treatment of autism. When you’re done listening, pass the link on to others you know. The podcast is meant to be downloaded and shared with friends, families, clients, acquaintances, teachers, employers and anyone else who might benefit.

The Easter Seals Living with Autism Study last year provided us with quantifiable information about the services and supports that families living with autism desperately need. Parents of children with autism are struggling with a host of worries that impact every aspect of their lives. They are particularly concerned that their family will lack the life-long supports needed to address the significant challenges of autism.

Results of the study revealed parents raising children with autism are very concerned about the future independence of their children. In fact, they’re far more concerned than parents of typically developing children — nearly 80 percent say they’re extremely or very concerned about their children’s independence as an adult, compared to only 32 percent of parents of typically developing children. This is especially true when it comes to their financial independence, quality of life, social and inter-personal connections, and employment and housing opportunities — and with good reason.

The study quantifies what Easter Seals has heard anecdotally over the years. The one consistent message Easter Seals hears from the families we serve — after the initial apprehension and anxiety of learning their child has autism — is an overwhelming concern about the life-long supports their child with autism may need.

More than a generation ago, Easter Seals was front and center during the polio epidemic, working tirelessly to help children and adults with polio gain the skills necessary to live independently. And now, Easter Seals is working internationally to provide help, hope and answers to families living with autism today by delivering personalized services and treatments, as well as advocating with government to encourage financing for research and improved access to services and supports for people with autism.

Every family living with a person who has autism faces unique challenges. Early detection and intervention are the essential first steps. There is an urgent need for increased funding and services — especially for adults with autism.

We want to help change all of this and make a difference for families living with autism today. Help us change the lives of people living with autism by becoming a volunteer or donor — visit www.actforautism.org to learn more about autism, read the findings of the Easter Seals Living with Autism Study, and find services at an Easter Seals near you.

Well, that article must have caught somebody’s attention at ABC TV — after the magazine came out, David Hamrick, 29, and Lindsey Nebeker, 27, were invited to appear in a story on ABC’s Good Morning America.

Despite their difficulties, they both kept trying to reach out and connect with others. Nebeker learned to make friends by reading Dale Carnegie’s “How to Win Friends and Influence People.” Hamrick had tried to untangle the rules of dating by reading self-help books.

Apparently, all that reading was worth it. The Good Morning America feature said that the couple met at an autism conference in 2005, became friends, and eventually did the “impossible.” They fell in love.