Connecting with college students

by Beth Finke

An email from a woman named Gabriela McCall Delgado alerted us to a very cool web site I’d like to share with you here — the We Connect Now website was created by Gabriela in 2008 with a $1,000 grant from YP4.

A native of Puerto Rico, Gabriella was diagnosed with attention deficit disorder and a learning disability that made reading very difficult for her. She got the idea for the web site back in high school when she became frustrated trying to find a disability-friendly college and learn what resources were available to her.

The We Connect Now website has been up and serving college students with disabilities since April of 2008, and it provides college students with disabilities access to relevant news, blogs, personal stories, information about government resources, government laws and regulations, and opportunities for contacting other college students with disabilities.

Gabriella said she developed the web site to “connect and integrate college students with disabilities as a virtual community with a voice on important issues.” The website is linked to by universities, groups and government entities serving persons with disabilities in all 50 states and in 11 other countries. Why not join the crowd and link to We Connect Now? I checked it out myself and can’t think of a better way to get a read on what’s on the minds of kids in college who have disabilities.

Families of children with autism face extra challenges while earning less

by Bob Glowacki

With tax day drawing near, I found a story in MyHealthNews Daily particularly disturbing — it’s about the financial challenges faced by families affected by autism.

The story shared the results of a study based on yearly surveys of U.S. households conducted between 2002 and 2008. It included 64,349 families with healthy children, 2,921 families of children with other health limitations and 261 families of children with autism.

On average, mothers of autistic children earn $14,755 less per year than mothers of healthy children, and $7,189 less per year than mothers of children with other health conditions (such as asthma and ADHD) that limit their ability to engage in childhood activities.

From the article: “Having a child with autism may limit the parents’ abilities to work because these children require more care. Finding quality, specialized childcare for autistic children may be difficult and costly, the researchers say.”

While fathers’ salaries by themselves were not affected by having a child with autism, the study showed that total family income was affected: on average, families with autistic children earned $17,763 less than other families, and $10,416 less than families with children with other health limitations.

The median American family income in 2010 was around $51,000, which means having a child with autism can mean a huge loss in earning potential and financial security for hundreds of thousands of families in the United States.

I have seen firsthand what can happen to families struggling to find services for their children. Before Wisconsin mandated health insurance coverage for children with autism, one family whose child served as the child representative for Easter Seals Southeast Wisconsin told me they had taken out a second mortgage on their home to finance autism services. Sadly, the Wisconsin mandate covers only half of employers in the state of Wisconsin. There is a glaring lack of respite, daycare options and other supports for families raising children with autism. Respite is a vital need to support and nurture families, strengthen marriages and balance responsibilities. I am only the messenger, but I wish I could say that this new report brought better news.

Easter Seals has prepared a state-of-the-states report on autism services that is a comprehensive and objective resource on how the fifty states, District of Columbia and Puerto Rico are responding to the needs of individuals living with autism spectrum disorders, including the 23 states that have passed autism insurance legislation. The profiles highlight the number of children with autism who have received the state’s special education services, state insurance coverage for autism if available, Medicaid services specific for individuals with autism, educational programs provided to students with autism or training that focused on autism, special education criteria, other state-led resources, and sponsors of autism legislation. I encourage you to give our State Autism Profiles a look. The profiles are a very helpful resource when you’re thinking about making important decisions for your family.

A wonderful insight into promoting a neurodiverse world

by Patricia Wright

Scott Robertson is a doctoral candidate at Penn State. He is also the cofounder of the Autistic Self Advocacy Network.

Mr. Robertson recently participated in a video interview series at Penn State called Conversations, and you can watch the interview here.

In his doctoral work, Mr. Robertson is assessing how online communities can support the transition from high school to university for individuals living with autism. What a cool topic!

The majority of his YouTube interview covers Mr. Robertson’s work in self-advocacy. He provides a great perspective on how society should “bend” to accommodate the unique needs of individuals living with autism, and he draws great parallels to ethnic, gender and LGBT diversity. Self advocates often provide wonderful insight into the world of living with autism, and Mr. Robertson provides just that in this interview promoting a neurodiverse world.

Avril Lavigne rocks with Safeway — one of my coolest days at work

by Kristen Barnfield

At the beginning of every April, Easter Seals’ top corporate partner Safeway launches its Support for People with Disabilities fundraising campaign during a fun-filled national kick off and media event close to its corporate headquarters in Pleasanton, CA. This year, the campaign hit the grocery retailer’s shelves with a little extra zing and serious star-power as Easter Seals brought its friend and singer, songwriter, and philanthropist Avril Lavigne to the party.

I could describe the day in great detail (it was so exciting to be a part of and great to watch Avril compete against Easter Seals’ Jim Williams and Dwight “the Catch” Clark of former Super Bowl 49ers fame during the celebrity bagging competition) but watching this clip from San Francisco’s KTVU-TV Channel 2 will give you a better sense of the action.

So here’s what’s really cool about this year’s campaign: as a way to thank customers who donate, Safeway and Easter Seals partnered with Avril Lavigne to bring a new, exclusive video element and enhanced fundraising to the effort. Customers who donate $5 will receive a coupon and code to view exclusive videos of Avril on tour, behind the scenes, performing from her dressing room and visiting Easter Seals programs for kids with disabilities. There’s also an exclusive acoustic version of one of the singer’s most popular songs. Just look for this image when you enter the store, and bring one of these Behind The Scenes passes to the register with you.

Safeway’s campaign means so much to Easter Seals and the millions of families living with disabilities we serve. To date, the company’s raised and donated more than $121 million to support our services. Add “support Easter Seals” to your shopping list and help us make this year’s effort the best yet!

And, if you need any more convincing, check out this teaser video Avril created for us. It gives you a glimpse of the backstage pass videos you’ll see if you donate!

Watch your heads — we’re raising the ceiling

by Bob Glowacki

To a parent, a child is everything. Each child is hope for the future, not just for one family, but for the entire community. Finding out last week that as many as one in 88 children who were 8 years old in 2008 had an autism spectrum diagnosis just reinforced our commitment to work hard to see that individuals with autism can achieve the best outcomes in life.

Too often, we define the opportunities people have. To me that is limiting. Here at Easter Seals Southeast Wisconsin, we believe in unlimited possibilities for our kids, and our new message “Easter Seals connecting children to a world of possibilities” is our commitment to raising the ceiling in each child’s life, which raises the ceiling on our future as a community.

Like so many other Easter Seals affiliates across the country, our autism services at Easter Seals Southeast Wisconsin grow with the children we serve. Autism services do not end once a child reaches a certain age — we offer an array of therapeutic and recreational programs for children and families throughout their lives.

We are fortunate to have corporate and individual support in opening up these possibilities to our kids and individuals we serve of all ages. Many are taking part in very tangible ways by supporting our April Act for Autism campaign to raise awareness and educate people on early symptoms of autism.

Nearly a dozen businesses across Southeast Wisconsin, including our national partner CVS Caremark, have joined us to raise awareness and money to help children and families living with autism by selling autism awareness pins created right here at our Workforce Training Center. Throughout the month of April we’re featuring fun and engaging activities to make others aware of the many ways our autism services open up new worlds of possibilities.

Thanks to Parents Magazine for spreading the word

by Rachel Talen

We’re so happy our friend Kara Corridan at Parents Magazine included us in her blog post, Is Autism Being Diagnosed Too Late?

Kara shares our concerns about the age of diagnosis for kids with autism. We’re thankful she’s helping us get the word out and letting people know that Easter Seals is here to help!

Through generous support from CVS Caremark, we’re able to offer free access to Brookes Publishing’s Ages & Stages Questionnaires (ASQ). When parents and caregivers go to the questionnaire, they can complete the online screening to see whether their child is developmentally on track.

Personally, I’ve had a lot of fun creating materials, pitching and writing about the ASQ — I think it’s such a cool tool! I’ve sent the link to all my friends with young kids.

Like Kara said in her post, the ASQ does not offer a diagnosis, but it can definitely help you share your concerns with your child’s pediatrician. We hope that you’ll share the link with your friends — and we can all help lower the age of diagnosis.

Where the action is

by Katy Beh Neas

I’m the Senior Vice President of Government Relations at the Office of Public Affairs at the Easter Seals Washington, D.C. office. I’m so pleased to be asked to be one of the guest bloggers on our new revamped Easter Seals blog.

I am a spokesperson for Easter Seals and have been an advocate for people with disabilities for a long, long time. Early on in my career I was legislative staff to Chairman Sen. Tom Harkin (D.-Iowa) of the Senate Subcommittee on Disability Policy and worked on the Americans with Disabilities Act (ADA) and the Individuals with Disabilities Education Act (IDEA).

Right now we are working to support the Keeping All Students Safe Act (S. 2020/HR 1381) because we want school personnel to be properly trained so that they and the students they educate are safe and can be successful in school.

Easter Seals advocates strongly at the federal and state level so that every child with a disability has the right to an appropriate education AND teachers have the supports they need for these kids to make meaningful academic progress. However, not all school personnel have the necessary training to meet the needs of children of all abilities at school, whether in the classroom, on the playground, or on the bus. As a result, tens of thousands of children are inappropriately restrained or secluded.

The US Department of Education and the General Accountability Office confirm that the majority of children who are abused or die at the hands of school personnel are students with disabilities. Shockingly, there are no federal rules against the use of restraint and seclusion in our nation’s public schools.

Our kids must be safe at school. Tell your senators and your representative to pass the Keeping All Students Safe Act.

My work here at the Easter Seals D.C. office keeps me right where the action is when it comes to disability legislation like this. I get to develop and implement strategies for influencing Congress, federal agencies, and others to increase opportunities for young children with disabilities and their families. I am proud to advocate for children and adults with disabilities and their families, and I look forward to keeping you informed.

The count is up — more autism services are necessary

by Patricia Wright

Data released from the CDC today indicates that as many as one in 88 children who were 8 years old in 2008 had an autism spectrum diagnosis. When the prevalence of autism goes up like this, the question most people ask is … “why?”

The question Easter Seals asks is: “How can we build capacity to effectively serve this increasing number of people living with autism?” Our focus has always been on services and supports. While many other organizations are researching the etiology of autism, Easter Seals continues to work hard to promote effective services and supports so that individuals with autism can achieve the best outcomes in life.

Another component of the data is the age of diagnosis. This data reports that the median age of diagnosis is 48 months for Autistic Disorder, 53 months for ASD/PDD and 75 months for Asperger Disorder. Given that autism can be accurately identified at 24 months, we have a lot of work to do in the area of early identification. Easter Seals is championing early identification and treatment with our Make the First Five Count campaign. If children aren’t diagnosed early I fear that they are not getting the treatment that affords them the greatest opportunity for success. We simply MUST improve our efforts in early identification.

Just flew home from China — my angel wings are tired!

by Patricia Wright

I just returned from China, where I had the opportunity to spend time with and learn from the autism service and support community in Anshan. The opportunity to work internationally is a wonderful component of my job here at Easter Seals — I learn so much from working in other cultures.

Easter Seals collaborates with the Five Project. This organization and its team members have been promoting autism awareness and professional skill development in China since 1992. This trip included an intensive training week at the Anshan Angel Wings Autism Program. I wrote a post here about a two-week visit to this program back in January 2011 — it was great to see familiar faces and witness all the progress first hand.

Last Friday, just before I left, the Angel Wings Program hosted a community training for parents, community members and members of the China Disabled Persons’ Federation of Anshan. The training was a huge success — more than 200 people attended.

All too often international work consists of simply providing a lecture to a large group. Large group lectures are great at conveying information, but they do not translate to practice. The opportunity to spend extended time on-site is what provides true meaning for me — intensive on-site coaching and modeling for teachers with children provides true professional development and improved teaching practices. A plan is in the works to have me return to China in June — I can’t wait!

In full bloom

by Rachel Talen

Early spring is such an exciting time for Easter Seals! With autism awareness month around the corner, media is buzzing and things are in full bloom here at headquarters!

Last Thursday was a big day for the campaign I’ve been working on for the last year. Make the First Five Count, which advocates for young kids with disabilities, was recognized by PR News as a leading campaign for Advocacy and Lobbying Efforts. Katy Neas, the Senior Vice President of Government Relations here at Easter Seals, came with me to represent Easter Seals as one of five finalists in this category at the Nonprofit PR Awards Luncheon at the National Press Club in Washington, D.C.

Make the First Five Count holds a special place in my heart. Since last March, I’ve been able to see it mature from its beginning phases on paper to a recognized initiative that’s truly raising awareness around early intervention services and making real differences in the lives of kids with disabilities.

I may have over tweeted a bit last Thursday, but it was such a perfect, sunny day in D.C. (apparently Cherry Blossoms are a thing there?) and I was excited to explore the city. As I walked around, I couldn’t help but think about how powerful this campaign was to unite Easter Seals across departments and across the miles (from our headquarters in Chicago to our Office of Public Affairs in D.C.) through our respective work on this baby. So if we’ve got a little P.R. swagger here at Easter Seals headquarters — you know why!

I’ll keep you updated on all things media and Make the First Five Count. So stay tuned!