People with disabilities: underutilized resources

by Laree Renda

Editor’s note: Laree Renda is Executive Vice President, Chief Strategist and Administrative Officer for Safeway Inc. Every year, Safeway devotes the month of April to raising money for Easter Seals in a coordinated company-wide fund raising drive. Laree’s blog post originally ran in The Contra Costa Times, a newspaper in the San Francisco Bay Area.

Read Laree Renda’s biography.

This year marks the 20th anniversary of the landmark Americans with Disabilities Act (ADA) that gave millions of previously forgotten citizens the legal right to more fully participate in American life — including employment.

For decades, people with disabilities were commonly institutionalized or “warehoused.” A small minority were afforded limited opportunity for employment in sheltered or isolated workplaces doing menial tasks often for less than the minimum wage.

Like the civil rights legislation in the 1960s that served as its foundation, ADA created some immediate and important change. The act literally reconfigured public space and redefined accessibility by breaking down physical and institutional barriers. The new law afforded this same demographic a broader range of opportunities to more fully exercise their constitutional rights. More specifically, ADA prompted employers to reconsider their definition of disability and proactively seek employment opportunities for this part of the population.

During the month of April, Safeway will conduct its annual disabilities fundraising campaign benefiting Easter Seals, Special Olympics and a range of other smaller organizations dedicated to assisting people with disabilities.

Safeway is committed to raising awareness and encouraging other employers to tap this vast talent pool all too commonly known as the “disabled.” As our nation regains its economic footing and we celebrate the anniversary of ADA, it is worth remembering that economic recovery should, at its core, include all segments of the population — that along with a paycheck, gainful employment affords a priceless measure of self worth.

While our nation has made progress, data on employment tells us that our nation is falling short of the spirit and intent of the ADA. In fact, people with disabilities remain on the outskirts of the workplace. According to the U.S. Department of Labor, of the some 27 million civilian, non-institutionalized Americans 16 years or older with a disability, approximately 80 percent are not even present in the workforce.

According to Richard Horne, director of Policy Planning and Research at the U.S. Department of Labor’s Office of Disability Employment, the percentage of people with a disability who are unemployed today has not significantly improved in the past two decades.

He says that while we are “eons beyond where we were in the 1970s and 1980s and opportunities are more plentiful, there’s still a long way to go.” Horne sees greater willingness among employers to hire people with disabilities; however, the vast job gap remains a barrier to any measure of success to the jobs provision of ADA.

In our view the key is two fold: first, employers must understand that physical or intellectual disability does not predict poor employability or productivity.

In fact, our experience proves the opposite. We employ nearly 10,000 people with disabilities, and they are among our most loyal and productive employees, covering a broad range of jobs both in our retail and support operations.

For instance, we have developed creative workplace solutions for visual and hearing-impaired clerks working in our retail stores.

Next, employers should understand they are not required to fly solo when employing people with disabilities. There are a host of national and regional organizations focused on training and placing people with disabilities in the workplace.

Easter Seals, The ARC, Stepping Stones, Clausen House, Jewish Vocational Services and other like-minded organizations are actively working to ensure that employers have resources to ensure employees with disabilities are successful creating a true win-win situation.

Many of these organizations provide on-site staffing to coach both the employee and employer on how to acclimate and accommodate people with disabilities.

Employers can utilize third-party coaches who shadow employees during their early days on the job. The process has created benefits well beyond providing a job. Through our experience we have gained unique and unexpected insights into the real value of mentoring and training.

As many American’s suffer through the most profound and sustained economic downturn of a generation, we would simply ask readers to consider this — the financial uncertainty and anxiety that many among us are experiencing for the first time remains a chronic and frustrating state of being for millions of people with disabilities seeking employment.

Easter Seals CEO James E. Williams Jr. recently expressed a profound sentiment that echoes our experience and that of other American companies that have chosen to hire and develop people with disabilities. He said that “people with disabilities make an enormous contribution to America on so many levels. Meaningful employment remains the best way for people with disabilities to be free from the centuries-old cycle of poverty, social isolation and marginalization.”

Easter Seals Crossroads delivers important autism resource to pediatricians

by Scott Fogo

The Easter Seals Crossroads team.

At this very moment Easter Seals Crossroads has six teams of professionals canvassing the Indianapolis area distributing Autism Resource Toolkits to over 150 pediatricians in recognition of Autism Awareness Month.

The toolkit is a product of the American Academy of Pediatrics and is an awesome resource for any doctor providing primary care. It includes information on everything from screening and diagnosis to handouts that doctors may give to their families. It even includes sample referral forms and letters that doctors can use to gain access to insurance payment for early intervention, educational, and therapeutic services for people with autism!

Through a grant from the Lilly Endowment we are able to distribute the Toolkits in an effort to support doctors in their care of families affected by autism. We want doctors to know that Easter Seals is ready to partner with them and the families they serve.

Autism voice on the National Council on Disability … maybe

by Patricia Wright

The National Council on Disability (NCD) may have an individual with autism in the mix soon. The NCD is an independent federal agency, composed of 15 members appointed by the president … and there’s the potential that one of these 15 will be Ari Ne’eman. Mr. Ne’eman is the founding president of the Autistic Self Advocacy Network (ASAN). Apparently, his appointment is provoking a bit of controversy.

The Autistic Self Advocacy Network seeks to advance the principles of the disability rights movement in the world of autism. If you read the statement on the National Council on Disability Web site’s home page, it seems like Ne’eman is a good fit for the council:

The purpose of NCD is to promote policies, programs, practices, and procedures that guarantee equal opportunity for all individuals with disabilities, and that empower individuals with disabilities to achieve economic self-sufficiency, independent living, and inclusion and integration into all aspects of society.

However, a story in the New York Times reports that this nomination is controversial.

Mr. Ne’eman declined to be interviewed, citing the pending action on his nomination. But in previous interviews with The New York Times and other publications, he has argued that those most severely affected by autism are the ones who benefit least from the pursuit of a cure, which he suggests is unattainable anytime soon. Instead, he says, resources should be devoted to accommodations and services that could improve their quality of life.

Easter Seals is also dedicated to having research and service dollars used to ensuring those living with autism today have access to a high quality life. Unfortunately, there are limited financial resources.

It is unfortunate that those living with autism must compete for dollars with the genetic researchers. The growing prevalence of autism indicates that there is significant need for support.

Should Mr. Ne’eman gain the appointment, he is going to have to represent people with autism. He will need to be aware and prepared to speak to the broad set of issues on the whole spectrum of people who live with autism — not just his experience.

Having an autism voice on the National Council on Disability is a positive step. Ideally, Mr. Ne’eman will be able to advocate for additional resources to help address the incredible unmet needs of those living with autism today.

Maurice drops the puck!

by Maurice Snell

March 10, 2010 was a historic day for the Easter Seals Therapeutic School and Center for Autism Research.

Staff, students and patrons were on hand for the official grand opening of the Chicago Wolves School Library. From the Chicago Wolves web site:

The library, located at Easter Seals Therapeutic School and Center for Autism Research, was made possible by funds raised through the Wolves’ annual St. Patrick’s Day jersey auction and raffle. The Chicago Wolves Library is part of the country’s first-ever, state-of-the-art, Therapeutic School and Center for Autism Research.

The festivities featured many personalities from the Wolves, former players Bob Nardella, Steve Martins and Skates, the team mascot. Students assisted the players on cutting the ribbon to officially open the library. Then they were entertained with the players reading wonderful stories of books from the library. The Chicago Wolves School Library is a huge success and will be an essential learning tool for the students at the Therapeutic School.

Two days after the library grand opening I had the opportunity to attend a Chicago Wolves game with some of my other co-workers at the Therapeutic School. What was the most special about the evening was that I had the opportunity to drop the ceremonial puck in front of thousands of spectators. I have to admit that it gave me goose bumps at first because I never had the opportunity of playing an important role in the game of hockey or any other major sporting event.

Here’s what happened: the public address announcer announced my name. I slowly walked on the red carpet. I could have heard a pin drop. A few seconds later, I successfully dropped the puck firmly onto the ice. The crowd gave me a standing ovation! I received applause from the crowd and the players, which was absolutely the best feeling in the world.

Unfortunately for the Wolves, they lost the game 3 to 0, but it was a good game until the very end. After the game, I had the opportunity to wait outside the locker room and meet the players and get some of their autographs. In the end, I received a cool gift, which is the actual hockey stick Noah Welch uses in his games. That was the most surreal moment in my life indeed!

I have to admit it was the first hockey game I experienced in person, and I had a great time dropping the puck in front of thousands of people. I would like to thank the Chicago Wolves for their continual support to Easter Seals Metropolitan Chicago. I hope they will continue to be involved in Easter Seals services for many years to come!

Health care reform meets our principles

by Jim Williams

Easter Seals has supported a series of health care reform principles related to legislation that proposes changes to the health care insurance and delivery system in the United States.

I am pleased to report that the majority of our principles were incorporated into the final language of the Patient Protection and Affordable Care Act approved by Congress and signed by President Obama on Tuesday.

Of particular note for people with autism is our principle regarding non-discrimination.

• Principle: That all individuals be assured participation in the nation’s health care system without discrimination on any basis, including disability or other special need, illness, condition, genetics, age, gender, ethnicity, financial resources and employment status.
• Principle Met: The legislation prohibits health plans from denying coverage to children with pre-existing conditions effective 6 months after enactment and, beginning in 2014, this applies to all persons.

I thank Easter Seals staff and our supporters for ensuring that people with disabilities and their families were not forgotten in health care reform.

Teen with autism has perfect March Madness picks

by Beth Finke

I decided to take part in the NCAA Men’s Basketball Tournament pool here at Easter Seals Headquarters this year. There was no money involved, thank goodness — both of my final teams were out by the second round!

If only I’d consulted Alex Hermann before making my picks. Alex has autism, he is 17 years old and lives in a nearby suburb of Chicago. We’re into the “Sweet Sixteen” round of this year’s upset-filled March Madness, and so far Alex has chosen every single winning team correctly. From an NBC story:

The odds of anybody doing that? One in 13,460,000, according to BookofOdds.com. It’s easier to win the lottery. Twice.

“I’m good at math,” Alex, a Glenbrook South High School student, said. “I’m kind of good at math and at stats I see on TV during the game.”

Alex’s 24-year-old brother Andrew helped his little brother enter the picks on CBSsports.com’s bracket challenge. They entered one of three bracket games offered by CBS. Unfortunately for Alex, it was the only one without a prize attached — one of the other CBS games gives $5,000 per winning round. Sounds like his mom is taking it all in stride.

“If he would have won any money he would have just saved it,” his mother Diane said. “He’s a big saver.”

For those of you who get an opportunity to pick again when it comes down to the Final Four, here’s a hint: Alex picked Purdue.

Historic health care reform

by Katy Beh Neas

I’m sitting in the auditorium at the Interior Department waiting for the president to speak. He just signed the health reform bill into law. I’m struck by the history of the moment. It took our great country almost 100 years to achieve this. Easter Seals played a major role in getting us to today. I’m so proud of what we’ve been able to accomplish and what this accomplishment means for our future. In six months, all children with pre-existing conditions can’t be denied coverage. I get shivers when I think about what this means for our families. And that is only the beginning! The president just arrived. More later …

Resources for military families

by Patricia Wright

While working in Hawaii I had the chance to provide support to many families who were in the military. The needs of these families were similar to any other family living with autism — things like teaching their child social skills and supporting their children to become as independent as possible.

Being in the military did present some unique challenges, however. Military families relocate. A lot! Families have to find local services and supports with each move. And when a family member is deployed, the parent left behind has to manage all of the parenting duties on their own.

The challenges these families faced provided me with a challenge as well. It was necessary to develop a new set of skills to ensure that their family needs were being addressed. I discovered services and supports available solely to military families. There were new acronyms to learn, like EFMP, ECHO and PX.

The Exceptional Family Member Program (EFMP) offers family support services. The Extended Care Health Option (ECHO) is a supplemental program providing financial assistance for services and supplies to eligible active duty family members. I also learned about the Post Exchange (PX) — the military has its own stores where many items families needed were remarkably inexpensive.

I had to learn a whole new vocabulary to work with the military. The military truly is a world unto itself! The Organization for Autism Research has just released a new resource for military families. Life Journey through Autism: A Guide for Military Families hopes to give family members:

• An understanding of autism and related intervention and treatment.
• Strategies for addressing the challenges of autism from the time of diagnosis through adulthood.
• An overview of the Department of Defense (DoD) and service policies related to having a child with autism.
• Information on autism treatment options and coverage within the military healthcare system
• Practical information and tools to guide your child’s education
• Tips and advice relative to transitions such as permanent change of station (PCS) moves, new schools and more.
• Links to additional resources relative to autism and military families.

The resource is free to military families and $5 for the rest of us. I know as a service provider to military families I would have loved to have had this resource in my back pocket.

Ozzie Guillen hosts Easter Seals family at Sox spring training

by Maurice Snell

Remember the blog post I wrote about White Sox manager Ozzie Guillen offering the Martin family to accompany him and other Sox players for a week at spring training in Arizona in 2010? Well, this is the week! The Martins are in Arizona right now! Here are some details from a White Sox press release:

Guillen will host Pete and Margaret Martin, along with their son Noah (age 10) and daughter, Hannah (age 8), from March 14-18. Noah and Hannah are both students at the Easter Seals Therapeutic School and Center for Autism Research. Noah was serving as a child ambassador for Easter Seals Metropolitan Chicago (ESMC) at the organization’s annual Gala where he met Guillen, who then invited Noah and the whole Martin family to Arizona.

A complimentary rental car, along with generous gift bags, will be provided to the Martin family courtesy of Avis, a corporate partner of the White Sox. Complimentary lodging will be provided by the Wigwam Resort in Glendale.

While in Arizona, Guillen has invited the Martins to the White Sox game on March 15 vs. Kansas City. They also will receive a special behind-the-scenes tour of the White Sox facilities and have a special meet-and greet with Guillen and the team.

Guillen has been very active with ESMC the past three years, having visited the school on several occasions, accepting the 2008 Corporate Award on behalf of the White Sox organization, and joining the Board of Directors in 2009.

When I first heard of Ozzie joining the Board of Directors, my jaw dropped. I am a lifelong Sox fan, and it was a good feeling for Ozzie to be involved in Easter Seals services in the Chicago area because he truly cares about the individuals living with autism. Whenever he and the White Sox organization visit the Therapeutic School, his first priority would be to see the children in the different classrooms because he has a huge heart for people with autism and believes they can make a huge impact in life successfully.

When I first met the Martin Family at Easter Seals, they were determined for their son, Noah to live a normal life. Like me, Noah was rolled up like a ball in a corner when he first attended the Therapeutic School. Everything was difficult for Noah in the beginning, being non-verbal in the beginning and struggling to adapt, which reminded me of my frustrating days entering the Therapeutic School.

As of right now, Noah is doing well in many different services and he is a shining star to the different students and staff. I couldn’t be happier for the Martin Family. Martin Family, if you’re reading this blog, I wish you all a nice trip and I know you’ll have fun out there. Be sure to get a lot of sun and autographs!

Funding autism services: the Census counts!

by Beth Finke

My husband has been working for the U.S. Census Bureau since January. He doesn’t go door-to-door (not yet, anyway) — he works as a recruiting clerk. Five days a week he heads to our local census office to grade the tests people take when applying for a Census job, keys in information, files forms and answers the phone when applicants call with questions. These days when we sit around at home talking about work, the conversation centers around autism, blogging, and … counting!

I figured ours must be the only “Easter Seals and U. S. Census Bureau” marriage. But then, just this week, I found out that Easter Seals has partnered with the U.S. Census Bureau to spread the word about the 2010 Census.

Census data is used to distribute more than $400 billion in federal funds to state and local governments each year, to apportion congressional seats to states and to make important decisions about what community services to provide. The 2010 Census questionnaire is only 10 questions long and should take about 10 minutes to fill out. An accurate count of people with autism and other disabilities is very important because the census count is used to distribute federal funding for Medicare and Medicaid, SSI, Rehabilitation Act, special education and many other grants and programs.

Most census questionnaires are mailed or hand-delivered during March and due to be returned by April 2010. Census workers will go door-to-door to visit households that did not return their forms from April through July 2010.

Completing the 2010 Census questionnaire is simple and safe. For more information, link to the U.S. Census Bureau’s Web site.