The New Autism Numbers – Why They Matter

Winter Bridge Over River

This past week, the Centers for Disease Control released their new data on the prevalence of autism. The numbers are staggering: an estimated 1 in 88 children will have autism. The number for boys is even higher: 1 in 54.

The implications of these numbers that seem on an unobstructed downhill slide stopped me in my tracks.

Think ahead ten years from now. Think about your family. A classroom. A school bus. Your church or synagogue, a train car, where you work and where you live. Think about your local Chapter and its capacity to respond to this population and their families, including funding resources. Think about the number of 1 in 88 and how that plays out in a human scale.

Are we ready?

Are we ready?

The Arc stands firmly embedded in more than 700 communities and it collectively serves more people with autism than any other organization. In this role, we must involve, engage, understand, and embrace the rising cohort of families connected to children with autism and provide them access to what we have learned, what we know.

An observation: It seems that many families connected to autism are indeed focused on the “cure” for the phenomenon that they feel has suddenly obscured the personality, communications, and functioning of their child. This focus has created a rupture at times between those who would and would not cure disabilities, sometimes creating robust debates within disability identity and disability pride and civil rights frameworks. Face it – many of us have worked hard to have society accept a “disability is a natural part of the human experience” attitude to advance full inclusion and quality life opportunities for people with disabilities. Going back to a “cure” stance and invoking medical model thinking for disability issues is perceived as a threat by many in the disability world.

“The Arc serves and supports people no matter what definitions are given to a specific diagnosis by the medical community.”

Understanding this is a loaded and sensitive topic. I think we can all agree that encountering autism is a much different experience than when a family encounters the genetically or physically explainable intellectual or developmental disability at birth. In my journey, I have listened, as perhaps you have, to heartfelt stories of how a child was one day, and then was someone else over a very short amount of time due to something called “autism.” There are no answers. No reasons or even proof – except for the altered behavior. From listening – without trying to alter their perspectives (an important element in the listening) – I now have a better understanding and empathy for why families seek the “cure” for autism. It’s not because they hate disability or value people with disabilities less than those who don’t have a disability; in fact, many autism-related families do not identify as being part of the disability community and have never been taught our principles. Families connected to autism may see the autism event as a preventable and perhaps reversible medical phenomenon that had monumental detrimental effects on their loved ones. And even as some do not accept autism as the obscuring agent, many surge into full acceptance of the child that now exists, as a whole person. Loved, celebrated, accepted, supported. Seeing them in action is not much different than watching our own families in action within The Arc.

And there lie the differences and the commonality, which are not, I would argue, mutually exclusive of the other. All we need is a bridge.

Building the Bridge

The Arc supports families connected to people intellectual and developmental disabilities across the lifespan, including those with autism. With families that are learning about us for the first time, we cannot be so ferocious in our demand for immediate alliance with our learned perspectives that we forget that we, too, started at some point on the road to understanding that disability is okay, it can be celebrated. At some point we learned for the first time what self determination, self advocacy, and disability pride are and how to infuse these principles into our daily lives. It is a journey. I do not believe that seeking answers and resolution to the question of autism are in conflict with our (The Arc’s) core values, mission, or principles. Whether autism is considered an epidemic or a public health emergency or not, The Arc serves and supports people no matter what definitions are given to a specific diagnosis by the medical community. I do believe that The Arc and others in the disability nation have a responsibility to understand these perspectives, to accept families for who they are and where they are in their journey. I believe that The Arc should offer them what we do know in terms of what inclusion means and how it can be achieved in the community with the right supports; about advocacy and self-advocacy, self-determination, disability pride; and provide culturally proficient services (autism as culture) to meet their needs. Along with that should come more thoughtful listening, a lowering of the aim against those who seek solutions, and the raising of a bridge to go with it.

In many ways, The Arc itself is a spectrum. A bridge, if you will. We serve and support many with an incredibly diverse array of needs, perspectives, diagnoses, and goals. Our mission: to promote and protect the human rights of people with intellectual and developmental disabilities and actively support their full inclusion and participation in the community throughout their lifetimes. There’s room in The Arc for many more.

Developmental Disabilities Awareness Month Q&A with T.J. Sutcliffe

This month, The Arc’s blog will feature a Q & A with members of The Arc’s national office staff to help raise awareness of issues important to the I/DD community during Developmental Disabilities Awareness Month. T.J. Sutcliffe is a policy advocate for The Arc working to promote and protect the rights of individuals with I/DD through positive public policy.

Don't Cut Our Lifeline LogoQ. T.J., you work on the front lines in Washington, D.C. helping to shape public policy to meet the needs of people with I/DD. Why is it important to take advantage of Developmental Disabilities Awareness Month in March to get involved in public policy?

“When a Member of Congress hears directly from a constituent with a disability … it can make the issue real in a way that statistics just can’t.”

A. Developmental Disabilities Awareness Month is the perfect time for people with I/DD, their families, and friends to get involved in public policy. Right now, the U.S. Congress is starting to look at Federal funding for next year, and we know that funding is going to be very tight. It’s a great time to speak up early in the process, and let Congress know that programs like Medicaid are a lifeline for people with I/DD and their families, and must be sustained. Also, a huge part of awareness is telling our stories – and the stories of people with I/DD and their families are incredibly powerful. When a Member of Congress hears directly from a constituent with a disability, a parent, a sibling, a friend, or a neighbor it can make the issue real in a way that statistics just can’t. So don’t wait. Check out The Arc’s “Don’t Cut Our Lifeline” Medicaid toolkit and visit The Arc’s Action Center to find out how you can get involved.

Celebrating the Anniversary of the Affordable Care Act

On the two year anniversary of the signing of the Affordable Care Act (ACA), I am reminded of the over two decades of health care advocacy by The Arc, and of one family in particular that came to the White House with me last summer to make the case to senior officials to protect the Medicaid lifeline.

This family has been through so much in our health care system with their 2 year old son, who has DiGeorge Syndrome. He was born without a pulmonary artery, has had a couple of strokes and heart surgeries, and has been on a ventilator since birth. He spent his first six and half months in the hospital, and hit the million dollar cap on his mother’s insurance by end of April 2010.

This little boy’s medical costs were so high that, even with two incomes, they were going to lose their home and everything else they worked hard for until receiving Medicaid. While the ACA won’t remove every insurance road block in his life, if the law had been in place when he was born, it could have made things a little easier for the family.

With families like this one in mind, The Arc has been a leader of the health reform charge in the disability community, calling for: the elimination of pre-existing conditions, ending discrimination in health care, expanding Medicaid eligibility, and universal health care coverage. While progress toward these goals has been achieved over the years, comprehensive health insurance reform was an elusive goal until the passage of the ACA. Today we can celebrate:

  • Kids can access health insurance now that was previously denied because of a pre-existing condition;
  • Young adults can stay on their parents private health insurance plan until they turn 26;
  • Access to free preventive care – like mammograms, colonoscopies, and other testing;
  • Health insurance companies can no longer arbitrarily place a life time limit on health insurance coverage; and
  • Insurance companies must justify large premium increases.

We have even more to look forward to in 2014, when the private health insurance markets known as the exchanges will be up and running in every state. These insurance market places will be open to small businesses and individuals in need of affordable health insurance, allowing the previously uninsured to find coverage they can fit in their budgets. There will be help for people who are low income to afford the insurance. Children’s dental and vision services, rehabilitative and habilitative services and devices for all ages, mental health and behavioral health services will be part of the health plans sold in the exchanges.

Medicaid coverage will be expanded to adults earning up to 133% of poverty, an expansion likely to benefit many adults with disabilities who may not qualify for Social Security benefits or earn too much to qualify for Medicaid currently. Pre-existing conditions limits for adults will be eliminated and nondiscrimination provisions will take effect. Insurance will be less expensive for people with health conditions because insurance companies will have limits on what they can charge.

Health care coverage matters and people with disabilities have much to gain from implementing these reforms. Your advocacy helped make it happen, and today we can take a moment celebrate your accomplishment!

Developmental Disabilities Awareness Month Q&A with Lynell Tucker

This month, The Arc’s blog will feature a Q & A with members of The Arc’s national office staff to help raise awareness of issues important to the I/DD community during Developmental Disabilities Awareness Month. Lynell Tucker is the program manager for The Arc’s School-to-Community Transition Program funded by the Walmart Foundation. The program supports chapters of The Arc in improving outcomes for young adults transitioning to life beyond high school.

Women planting flowers in a greenhouseQ. Lynell, you are deeply involved in The Arc’s School-to-Community Transition program funded by the Walmart Foundation. Help us raise some awareness about transition issues for the I/DD community during Developmental Disabilities Awareness Month. What do you think is the biggest challenge facing young people with intellectual and developmental disabilities when they finish high school and have to transition to post-secondary education, employment or life in the community?

“Youth with I/DD have a world of opportunity open to them.”

A. The biggest challenge seems to be for people with intellectual and developmental disabilities to know what they want to do after high school. Youth with I/DD have a world of opportunity open to them; however, they may not always know that. We are seeing that there is a heavy focus on getting on waiting lists, applying for the adult service system, and making sure that they are able to access the necessary services and supports once they graduate. These are all vital aspects of transitioning into adult life; however, just as important is what one wants to do with their life – their hopes and dreams. Students and youth participating in the School-to-Community Transition Initiative are discovering for themselves what interests them. Do they want to go to college? Work in the community? Live independently, and so much more? The participating chapters of The Arc who are implementing transition programs are facilitating this discovery through the use of life planning tools. Students are overcoming the challenges by determining their future for themselves.

Developmental Disabilities Awareness Month Q&A with Laurie Ertz

This month, The Arc’s blog will feature a Q & A with members of The Arc’s national office staff to help raise awareness of issues important to the I/DD community during Developmental Disabilities Awareness Month. Laurie Ertz is the Director of Chapter Excellence and works with our national network of 700_ chapters to give them the tools and resources they need to better serve people with I/DD.

Laurie Ertz

Q. Laurie, you recently helped launch The Arc’s National Council of Self Advocates. Why is it important to have people with intellectual and developmental disabilities in leadership roles at The Arc.

A. People with intellectual and developmental disabilities (I/DD), whether they identify as self advocates or not, are quite simply the only people who can tell us what truly matters to them. As much as the people who love and support them care about their well-being, that caregiver cannot completely put him or herself in the shoes of a person with an intellectual or developmental disability. So, as an organization, we need to fully include people with I/DD, especially in leadership roles to even hope to move forward toward our goal. It’s all about perspective and the unique perspective of an individual with I/DD is the most valuable resource we have as a movement.

“[They] are quite simply the only people who can tell us what truly matters to them.”

The National Council of Self Advocates was developed to ensure that individuals with I/DD have a clear voice in creating lives that allow them meaningful choices for a promising future. It’s designed to help them be leaders in their communities, share their values of self determination and help educate their communities about I/DD. We invite anyone with I/DD who is a member of The Arc to participate in or contribute to the Council and let us hear your voice!

Developmental Disabilities Awareness Month Q&A with Amy Goodman

Amy Goodman

Amy Goodman

This month, The Arc’s blog will feature a Q & A with members of The Arc’s national office staff to help raise awareness of issues important to the I/DD community during Developmental Disabilities Awareness Month. Amy Goodman is the co-director of the Autism Now National Resource and Information Center and is on the autism spectrum.

Q. Amy, as a person who is on the autism spectrum, help us raise some awareness during Developmental Disabilities Awareness Month. Are there any myths or popular misconceptions about autism that you would like to help dispel?

“Individuals on the autism spectrum can work, should work and make some of the best employees.”

A. Yes, it’s a myth that individuals with autism or Asperger’s syndrome cannot work because of their disability. Not true. Individuals on the autism spectrum can work, should work and make some of the best employees. An individual just needs to find an environment that is accepting of disabilities, a supervisor that has some experience working with individuals on the spectrum, and a boss who understands their unique characteristics and how they can fit in to help make others aware of what it is like to live with a disability. If more people would take the time to see the individual for who they are and what they can do and not focus on the disability maybe more individuals with autism or Asperger’s would be employed, which might solve the problem of having too many individuals on SSI. Or maybe not, but it’s a start.

Make Your Mark This Election Year

American Association on Intellectual and Developmental Disabilities, Self Advocates Becoming Empowered, Association of University Centers on Disabilities, United Cerebral Palsy, National Association of Council on Developmental Disabilities, The ArcEach year, hundreds of advocates attend the Disability Policy Seminar in Washington, D.C. to learn more about and discuss the hottest topics in disability public policy. We invite you to join us April 23-25 for your biggest and best opportunity to advance the grassroots movement for people with I/DD. This year it is even more important to attend the Seminar and have your voice heard as we approach a pivotal presidential election in November.

Millions of Americans deal with the impact of public policy related to I/DD every day. From self-advocates to their family members and caregivers to people working for organizations serving individuals with I/DD, there is a large bloc of voters who have the potential to change how our government views and interacts with people with disabilities. The Seminar gives you a platform to come together with other advocates, become educated on the issues, and take the initiative to speak with your elected officials about what is important to you.

Monday and Tuesday, April 23-24, are filled with informative sessions from disability policy experts and opportunities to network with others from your state. Then the event culminates on Wednesday, April 25, with attendees organizing on Capitol Hill to personally meet with their elected representative and make a case for their cause supported by information about the issues provided during the Seminar. You can also attend a special Webinar hosted by AUCD on March 28 to help prepare you to make the most of the event with an overview and orientation for the Seminar (Visit for Webinar registration and details).

You can register now and book your room at the Grand Hyatt in downtown Washington D.C. for a special early registration rate at and find out more details about the stimulating program on tap for this year’s event. But act soon – special rates on rooms ends March 20.

Hosted by: The Arc, United Cerebral Palsy (UCP), Association of University Centers on Disabilities (AUCD), American Association on Intellectual and Developmental Disabilities (AAIDD), National Association of Councils on Developmental Disabilities (NADD), and Self-Advocates Becoming Empowered (SABE).

What would YOU ask the White House?

This past Tuesday, the nation tuned in to watch President Obama give his third State of the Union address. To continue the conversation, over the next few days the White House is giving the public an opportunity to get their questions answered by senior White House officials.  On Friday, it’s our turn!

Tomorrow at 9:00 am EST, Kareem Dale, Special Assistant to the President for Disability Policy will be available to answer questions on Twitter. This session has been organized to specifically address questions about disability related issues, so let’s make The Arc’s voice heard at the White House!

You can submit your questions on Twitter using the hashtag #WHChat. Kareem will answer the questions in real-time on Twitter, you can follow the Q&A through the @WHLive Twitter account.

Please share any questions you get answered with The Arc –

Tell Your Members of Congress – Don’t Cut Our Lifeline!

If we don’t speak up now, Medicaid and other programs critical to people with intellectual and/or developmental disabilities (I/DD) may take the brunt of the cuts. Members of Congress are very reluctant to cut Medicare, as the elderly community is a very reliable voting constituency and they are very vocal advocates. Historically, Social Security is considered the “third rail” in politics, and as such, not to be touched. That leaves Medicaid on the table as a prime target for cuts.

How can we make Congress understand why Medicaid is so important?
We have to personalize the importance of protecting Medicaid for people with I/DD. Advocates need to do the following:

1) Call your Senators or Member of the House of Representatives
Call the Capitol Switchboard to reach your Members of Congress: 202-224-3121. Also, be sure to sign up for our Action Alerts, and act quickly when we send them!

2) Make an Appointment with your Elected Officials
Call your elected officials for an appointment to discuss what Medicaid means to you. Find out when your Member of the House of Representatives will be home from Washington, and call his or her district office to make an appointment. Stress with the scheduler that you know that budget cuts could come up for a vote this summer, and you want your voice to be heard!

3) Attend a Town Hall Meeting
When Members of Congress are back in their districts, they often hold town hall meetings. Call their district offices to find out when the next meeting is so that you can attend and share your story directly with your Representative.

4) Invite your Senators and Representative to your local chapter of The Arc.
Invite them to join you at places or events where they will be able to meet with people with disabilities who depend heavily on Medicaid. For example, invite them to a supported housing setting or apartment supported by your chapter(s). Seeing firsthand the people who depend on Medicaid-funded long-term services and supports can have a powerful effect on Members of Congress and can help to dispel many of the unfortunate misperceptions about the program (for example, that it serves people who don’t really need it). If possible, invite them to a chapter event that’s happening during the recess where they may meet and talk with people who depend on Medicaid for services.

5) Write a Letter to the Editor
Local newspapers will print letters from local residents on timely topics. Sharing your personal story about how Medicaid is your lifeline to health care and long term services and supports will help people understand why we must maintain the program.

6) Use Social Media to Spread the Word
Facebook and Twitter are often the first source of news for your friends and family. Use your online network to ask them to get involved in this fight!

Spread Some Awareness in Your World

March is Developmental Disabilities Awareness Month thanks to a 1987 Presidential Proclamation which was the direct result of the advocacy efforts of The Arc.  A lot has changed since then: more people with intellectual and developmental disabilities (I/DD) are living and thriving in their communities rather than institutions, there are more opportunities in education and employment, more protections in health care, the legal system and other areas of human rights, there are more positive and accurate portrayals of people with I/DD in the arts, the list goes on. But we must remember that many of those advancements were hard won. Self-advocacy and advocacy on behalf of those with I/DD was the impetus for many of the positive changes in our society, such as the proclamation that recognized DD Awareness Month.

It’s up to you to continue to advocate for respect, access and inclusion of people with I/DD. Take advantage of March to spread some awareness in your world. Learn more about the issues concerning people with I/DD and The Arc’s position on those issues. Learn more about public policy that impacts people with I/DD and contact your legislator. Since many people with disabilities rely on publicly funded services to fully participate in their communities, policy makers need to know you are concerned about continuing those services in the face of budget cuts during tough economic times. And, get involved. Find a local chapter of The Arc and volunteer or donate. Together we can continue to make a difference.