This post is by Mark Roithmayr, Autism Speaks’ President.
Earlier this week I had the honor and privilege of traveling to Washington, D.C., for special ceremonies to commemorate the 20th anniversary of the Americans with Disabilities Act (ADA).
The term “landmark legislation” is greatly overused, but like the Civil Rights Act of 1964, this law literally changed life for millions of people. The ADA has helped level the playing field for people with disabilities in this country, providing important civil rights protections and equal opportunities in the workplace and elsewhere.
As I took part in ceremonies at the Capitol Rotunda and, later, the White House, standing among other advocates for various causes, I found myself reflecting on those past two decades.
Twenty years ago, America barely recognized the word autism, nor understood what it meant for individuals to live with autism. Autism was absent from those founding moments two decades ago. Yet during the ceremonies this week, autism was acknowledged over and over again by elected officials, colleagues and advocates alike. From the floor of the House, Representative Patrick Kennedy referenced autism as one of two federal imperatives for increased funding. Later at the White House ceremonies, President Obama’s Domestic Policy Director Melody Barnes cited the autism movement as a being the central part of today’s disability movement. Next, actor Robert David Hall –himself a double amputee following a devastating car accident – took the opportunity to discuss his twin nephews, both on the autism spectrum, while introducing President Obama, poignantly telling the story of how his brother and sister-in-law have to “climb mountains every day.”
Listening to the group of eloquent speakers, all I could think about was how incredibly far the autism advocacy movement has come in just a few short years. Not only was the day remarkable for the recognition of autism and its overwhelming prevalence in our society – our 1 in 110 children – our 1 in 70 boys, but that these numbers have climbed to new heights being diagnosed more often than childhood cancer, juvenile diabetes and pediatric AIDS combined. There is no doubt that autism is now at the fore of the public’s consciousness as a disorder that is recognized as a national health crisis and a top public health priority
But the ADA ceremonies were about something even larger than our autism movement. It was a day to recognize disability rights as a core civil rights issue and a cause not for partisanship, but for uniting humanity at large. The quotes ran from Thomas Jefferson to Martin Luther King. President Obama honored President George H. Bush who passed the original legislation. Representative John Boener (R, OH) applauded James Langevin (D, RI) – the first quadriplegic to serve in the U.S. House of Representatives – who served as Speaker of the House for the day, the first time that Congress was presided over from a wheelchair.
Reflecting, I truly believe the ADA commemoration was about building on our autism victories, small and large, toward our collective future. The abilities of our community, our children, our teens, our young adults and our adults, are extraordinary and we have the collective will and the moral imperative to create an even better future. The path is clear.
- Our autism community has the ability learn – but we need to ensure accessibility to education through the life span.
- Our autism community has the ability to work – but we need to ensure accessibility to jobs.
- Our autism community has the ability to live independently – but we need to ensure accessibility to housing; and not least,
- Our autism community has the ability to be part of the wonderful social fabric of America – but we need to ensure access to community resources.
In the words of Thomas Jefferson, “the pursuit of happiness is an inalienable American right” and the autism community deserves no less.
We also encourage you to read Celebrating the 20th Anniversary of the Americans with Disabilities Act with Substance blog post by Kareem Dale.
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To commemorate the 20th anniversary of the Americans with Disabilities Act, National Disability Institute presents Economic Empowerment – Defining the New American Dream, a nationwide video contest open to all persons with disabilities. To participate, create a 3-minute video that tells the story of how you are working to achieve your American Dream. One grand prize winner will receive $1,000 and will win a trip to Washington, D.C. to present their video at NDI’s 6th Annual Real Economic Impact Tour Kick-Off Event!
All entries must be received by August 13, 2010.
The 20th Anniversary of the Americans with Disabilities Act: A time to Celebrate and to Review our Commitment
This is a guest post by Steven Beck, Vice President of the Down Syndrome Society of Northern Virginia and father of a 10-year-old daughter with Down syndrome.
My name is Steve Beck and I am, most importantly, the father of two beautiful 10, and 13-year-old daughters and husband to Catherine. My 10-year-old daughter has Down syndrome. One result of my younger daughter having Down syndrome is that I have become increasing involved in volunteer work at both the local and national levels. Currently, I am Vice President of the Down Syndrome Association of Northern Virginia and a Board Member of the National Down Syndrome Society.
As we spend time this week celebrating the 20th anniversary of the Americans with Disabilities Act we need to also re-commit ourselves to moving forward. By prohibiting discrimination on the basis of disability in employment, state and local government, public accommodations, commercial facilities, transportation, and telecommunications, the ADA has provided people with disabilities access to all parts of our community both socially and economically. Guaranteeing access is one step, but providing the tools and supports needed to fully engage that opportunity is a different issue. One of the primary tools needed for all Americans and their families is the opportunity to plan, save, and invest money that can be used to pay for critical needs such as education, healthcare, and retirement.
Over the past four years I have been working with group of national organizations, including Autism Speaks, to pass the Achieving a Better Life Experience or ABLE Act of 2009. While government systems such as Medicaid, SSI, and SSDI provide a wide variety of critical supports for our community they simply cannot cover the full array of needs. In addition, many of the rules that govern them drastically limit individuals and their family’s ability to plan, save and accumulate assets to help fill these gaps. As a result, people are forced into poverty just in order to maintain access to these government benefits.
The ABLE Act would establish a savings instrument similar to ones that all other Americans have access to through 529 College Accounts, Health Savings Accounts, Individual Retirement Accounts, and 401Ks. Like these accounts, ABLE Accounts could be set up and managed with little or no cost. The money can be controlled by the individual, their parents, a guardian, or third-party based on decisions made by the individual and their family. There is a very broad array of qualified expenses the money can be used for including healthcare, transportation, education, housing, community based support services, employment training and support and other life necessities. The money in the accounts grows tax-free and can be distributed tax-free as long as it is spent for a qualified expense. Most importantly, the assets held in the accounts cannot be used to disqualify individuals from critical means tested programs such as Medicaid, SSI and SSDI.
Now is the time to provide individuals with disabilities the same types of financial tools that all other Americans use to save for their future needs and to pay for critical parts of everyday community living. The ADA was passed 10 years before my daughter was born and I was still in college. I started working on the ABLE Act when she was eight, and she will be 11 in November. We cannot afford to wait much longer to start saving for her future and neither can millions of other Americans. I want and demand that she have the same opportunities to attend college, get a job of her choosing, and live independently, just like her older sister.
The ABLE Act (H.R. 1205) has 190 co-sponsors in the House and (S. 493) has 24 Senate co-sponsors as of July 24, and well over 40 national organizations supporting its passage. Please, visit www.autismvotes.org/able to contact your members of Congress and ask them to pass this important bill into law this year.
To learn more about Autism Votes, take action today on autism insurance reform legislation in your state, or find out about Autism Speaks’ federal legislative advocacy agenda, please visit www.autismvotes.org
I do not have a child with autism and it is impossible for me to understand what day-to-day challenges individuals with autism and their families face. However, I know that we are all but one diagnosis away from our lives changing forever, and those families that are handed this diagnosis are suddenly faced with a challenge that might seem daunting.
My 14-year-old daughter, Megan, has severe spastic quadriplegia cerebral palsy. My father, in an instant, four years ago, fell off a ladder and became paralyzed from the waist down. I take care of my daughter at home and then work with my father at our family-owned business. I see them both struggle with their everyday lives and know it isn’t easy. My life changed in a moment, and theirs did as well, when their own diagnosis was handed to them. Accidents happen, ladders fall, babies are born prematurely. We are all susceptible to whatever is next, good or bad. Team Autism Speaks strives to provide a solution to this – by raising awareness, searching for a cure and closing the gap to the unknown.
Why did I choose Team Autism Speaks? I realize that just because my daughter and father are disabled doesn’t make me any less likely to have a friend who has a child with autism, a niece or nephew who might be diagnosed, or know a person in our community living every day with it.
I will spend this summer and fall training for the ING New York City Marathon, a dream I never thought I would achieve when I first laced up my running shoes around the time of my father’s accident. Through the years, I have felt that I run because my daughter and father cannot. Now I will run because, perhaps, I can make a difference to those families who live, struggle and thrive with an autism diagnosis; may my small 26.2 mile journey be but a large step in overcoming one more developmental disability. We do not know what is around the corner, but I would like to help lead the way.
Space is quickly filling up, so if you would like to run with a group passionate about raising awareness then we want you to Team Up with Autism Speaks for the ING NYC Marathon 2010 please visit http://events.autismspeaks.org/nycmarathon for complete details.
This “In Their Own Words” essay is by Timmesa Eads from Mt. Airy, N.C.
If you have a story you wish to share about your personal experience with autism, please send it to firstname.lastname@example.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.
Tune in to SIRIUS|XM’s Doctor Radio (SIRIUS Ch. 114 & XM 119) Friday, April 23 as they help to raise autism awareness during autism awareness month. “Doctor Radio Reports – Understanding Autism” will air from 10 am to 12 pm EDT. The program will feature leading scientific experts, as well as leaders in the corporate world, to discuss autism, autism research and vocational opportunities. Guests include Autism Speaks’ own Chief Science Officer Geri Dawson, Ph.D., Craig Newschaffer, Ph.D., Drexel University; Melissa Nishawala, M.D., NYU School of Medicine; Kim DeOre, M.D., NYU School of Medicine and mother of a child with autism; Peter F. Gerhardt, Ed.D., Organization for Autism Research; and Randy Lewis, parent and Walgreens executive (see more below). Noted journalist Perri Peltz will serve as the segment’s anchor person.
The program will replay the following times:
Friday, April 23 – 8:00 pm ET
Saturday, April 24 – 10:00 am and 4:00 pm
Sunday, April 25 – noon and 8:00 p.m.
Then on Sunday, April 25, “American Voices,” on SIRIUS|XM Stars Channel (channel 102) hosted by Senator Bill Bradley, will air a special segment with Randy Lewis. Walgreens has been staunch proponent for creating innovative vocational opportunities for adults with disabilities including autism. Show times are below.
Sunday, April 25
2:00 am – 3:00 am ET
6:00 am – 8:00 am ET
10:00 am – 11:00 am ET
Listen to a promotional spot for Friday’s episode below.
We applaud the Obama White House for its continuing support of individuals with disabilities. Through the stimulus act, the administration committed additional funds to autism research, on top of the existing National Institutes of Health funding and Combating Autism Act funding.
Kareem Dale, Special Assistant to the President for Disability Policy, blogged yesterday about another move the administration made to support those with disabilities. Read more here in his White House blog. We applaud all their efforts to move the disability agenda ahead and we look forward to seeing what’s around the next corner for autism.