A Mother’s Open–Letter to The Arc About Wings for Autism

Dear Sarah,

I am writing to express my continued gratitude for the Wings For Autism event held in Anchorage, Alaska.

Jack and his cat

Jack and his cat

Our 11 year old son Jack experiences high functioning autism, which he was diagnosed with at four years of age.  While Jack did fly at ages 5 months and 9 months respectively, in his memory he has never been on an airplane, which raised concerns for us, since we have scheduled air-travel this summer.

The Wings for Autism experience was far beyond any of our expectations (our family of 4 attended).  The attention to detail, real life/real time airport experience of obtaining tickets, line waiting, Transportation Security Administration (TSA), airport exploring, more waiting at the gate; it was all so needed, and so appreciated.  The time on the aircraft was more than we could have ever hoped for, between the taxiing and “cruising altitude” beverage/snack service, the crew going through their regular motions/speeches and the pilots coaching us through the sounds and motions of the aircraft… truly exemplary.  To add to this, the generosity of all of the hands at play, from the folks getting us through the lines, to the TSA, to the airport staff, to ground crew, to the flight staff and of course the pilots, The Arc of Anchorage, Ted Stevens International Airport for handling the logistics and security of a “mock” boarding and flight on their active airstrip, not to mention all of the volunteers and hours/dollars funneled into this event is staggering and to know that this was all done for our kids, our families to have a better experience, well, it is so humbling and overwhelming to me it makes me want to cry.

Thank you.

As for our Jack, he struggled.  And it couldn’t have been a better place, better environment, FOR him to struggle.  It gave me a good glimpse of what I might see and might expect this summer.  Jack did very well for about the first 1 1/2 hour (noon to 1:30), and then he started to lose his patience.  The noises (especially from children), the waiting, the MORE waiting, it set him right to the edge.  (It is worth noting that there are interventions I could have used/will use in the future, but I wanted him to have a “rougher” experience for this practice run so I could really have an accurate view of where I needed to focus for our trip this summer; also, I knew this was the time for him to have it harder, rather than the “real” time.)  When we boarded the aircraft and sat down in his window seat, he began to emotionally shut down.  He started to have what can best be described as a panic attack, breathing fast and clenching his hands, and said he “didn’t like this anymore” and “wanted to get off/leave”.  I told him we could shut the shade on the window, which we did, and I just quietly talked him through it (I figured he would want the window, but next time maybe I’ll seat him elsewhere).  I told him that the best thing we could do was to sit in the uncomfortableness and be uncomfortable, and eventually the anxiety feeling would start to come down.  I reminded him that if we “ran away” from this moment it would only be much worse the next time (I personally have diagnosed Obsessive Compulsive Disorder, and this is true for me; I try and use this approach with Jack as well), and I knew he didn’t want to miss out on travel and experiencing new places like other people.

Jack eventually pulled the shade back up, and about 20 minutes into it, he calmed a bit and smiled, and said he felt better.  He kept wanting reassurance over and over that we weren’t going to take off.  He is terrified of motion sickness and throwing up, and he kept talking to himself about how he’d be okay, and how he probably wouldn’t throw up on the real trip this summer.  He checked out the bathroom as well.  While he never fully relaxed, all in all it went very well.  When it was all said and done, he claimed it was “awesome” and said on a scale of 1-10, it was a 10 :).

Jack still has worries about taking off/landing, and getting sick on the plane.  We will cross those hurdles as they come.  Yet, this experience with Wings For Autism gave us something we normally could never obtain, which was practice in an airport and on a real aircraft.  Who gets to have that?!!  I don’t think I can fully punctuate how important and valuable this experience was to our family and to Jack; all I can say is thank you, and hope it is a program that can be repeated so more families can benefit like we did.

Jack and his brother

Jack and his brother

One thing that all parents keep in their proverbial back pocket, ESPECIALLY families with special needs children, is the ability to leave/exit a situation if needed.  If the event is too stimulating, your child is having a meltdown, the event is too long, there is too much noise, etc., YOU CAN LEAVE.  It is a safety net, and benefits not only your child, but it is also executed in consideration for the people around you.  A plane is probably the ONLY environment in which you CANNOT leave.  You can’t even really move away.  Knowing this certainty can be figuratively paralyzing for the parents; what are you going to do if things go poorly?  All you can do is the best you can, but that one ace-in-the-hole of leaving the situation is off the table.  It is enough to keep some of us from wanting to knowingly put ourselves and our kids in that potential situation.   That is the way it has been for us.  I would be remiss if I did not admit my own anxiety about air travel this summer, but I know it is something we must rise to and experience, and I will do everything I can to support it going as smoothly as possible for both Jack and for those around us.  It is a tall order.  Thanks to Wings For Autism, it is now more attainable.

Special needs, and all the trimmings that come with it, can be difficult, even impossible, to understand.  The good thing is, people don’t need to understand.  On an empirical level, it is too much to even ask.  To raise my expectations and hope for someone else to understand what our life is like, what Jack’s life is like, might be asking something that person cannot give.  However, everyone is capable of giving compassion.  Compassion does not have to in concert with “getting it”; compassion can stand alone.  And when a parent like me or even Jack himself receives a knowing look of compassion, a gesture in kind, a gentle word or nod, an extension of patience, it is such a gift.  That is the empathy that nourishes and gets us through that moment, that hour, that day, or that week.  It satiates in a way that even I cannot express, and it keeps me going.  It keeps Jack going.  And for this, I will always remain truly grateful.

For this opportunity, we remain in your debt.

Warmest Regards,

Katherine

The Arc’s School-to-Community Transition Initiative Expands With the Help of The AT&T Foundation

Through funding from the AT&T Foundation, The Arc’s School-to-Community Transition Initiative will be supporting five additional chapters of The Arc with sub-grants for new transition projects through 2014. These projects will connect individuals with intellectual and developmental disabilities (I/DD) with paid employment opportunities and/or a degree/certificate-earning postsecondary education program.

“We are thrilled to be expanding our School-to-Community Transition Initiative, and are grateful to The AT&T Foundation for their generous support.  For individuals with intellectual and developmental disabilities and their families, the transition from high school can be a scary and stressful time. Since our School-to-Community Transition Initiative launched in 2009, we have been able to support more than 1300 individuals as they approached this exciting milestone. We look forward to arming more individuals with the skills and confidence they need to succeed whether their next step is post-secondary education or employment,” said Peter V. Berns, CEO of The Arc.

Since 2009, over 50 Chapters in The Arc have participated in this initiative to further enhance their work with youth with I/DD, ages 12-23, that receive special education services and are preparing to transition from school to adult life. Outcomes for these programs include development of comprehensive transition plans while students are still in high school and connecting transitioning individuals with employment and post-secondary education opportunities. Projects include elements of inter-agency collaboration, a focus on enhancing community connections, and self-determination to help them successfully meet these objectives.

Recipients of the five new sub-grants are:

The Agreement to Re-Open the Federal Government and Raise the Nation’s Debt Ceiling – What Does it Mean to The Arc?

The Arc is relieved that Congress reached a last minute agreement to reopen the federal government and avoid defaulting on our debts.  The government shutdown had already put in jeopardy services and supports that people with intellectual and developmental disabilities (I/DD) rely on, and the narrowly averted default would have resulted in an economic crisis in our country and around the world that would have affected all citizens.   However, despite this temporary victory, we recognize the very difficult challenges that lie ahead for the disability community in the next few months.

What is in the Agreement?  The measure, which passed by comfortable margins in both chambers and was signed shortly afterwards by President Obama, has five key provisions:

  1. reopening of the federal government through January 15 at sequestration levels (the approximately 5% automatic, across-the-board spending cuts for discretionary program);
  2. an extension of the debt limit until February 7 and a provision that requires a proactive vote to disapprove extending the debt limit, as opposed to having regular votes to raise it;
  3. establishment of a House-Senate budget conference committee to come up with long-term spending plans by December 13;
  4. a requirement for income verification for recipients of subsidies under the Affordable Care Act’s newly-established health insurance exchanges; and
  5. back pay for furloughed federal workers.

How does this impact The Arc?  The budget conference committee is a return to a more normal way of doing business in the Congress.  However, it does mean that everything is on the table for consideration, including  proposals harmful to people with I/DD that have surfaced in previous budget proposals.  Some of these have included cuts to entitlement programs that people with disabilities rely on for their health and economic security, such as block granting Medicaid and dramatically cutting spending for the program, turning Medicare into a voucher program and cutting payments to doctors, and reducing the costs of living adjustments for Social Security and other programs through the adoption of the “chained” consumer price index (CPI).  Discretionary programs (which include disability-related programs such as housing, education, and employment) also have been targeted for further cuts.   On the other hand, the budget conference committee leadership already met, with some leaders stressing that they must find common ground.  Learn more about the budget conference at Politico.com.

What Can The Arc Do?  The Arc and our network of advocates must be prepared to respond if the budget conference committee begins to seriously consider “entitlement reform,” which mostly consists of cuts and harmful changes to Medicaid, Social Security and its disability programs, and Medicare, as well as threats to funding for critical discretionary programs.  The Arc will monitor this closely.  Learn more about how to get involved by signing up for our Action E-List.

Meet Martha

Martha and Nancy Webster

Martha and Nancy Webster at The Arc’s National Convention and International Forum in October 2012.

We’d like you to meet Martha. Why? Because we just can’t get enough of her infectious smile and positive personality. Martha has an intellectual and developmental disability (I/DD), but thanks to the support she receives from her family and programs such as Medicaid and Social Security, her disability has never held her back. She enjoys baseball and bowling and lives independently in an apartment in Indiana with her friends. She thinks everyone with I/DD should have a chance to do the same.

“People should be able to live like I do,” Martha states confidently…with a smile.

Maybe you know someone like Martha….or like Nancy Webster, her concerned sister?  Nancy was recently elected president of the board of directors of The Arc, the nation’s largest community-based organization advocating for people with I/DD. But long before Nancy was a part of our movement, she was Martha’s sister.

Help raise $2,013 for 2013

Nancy recently told us: “Like many sisters, I worry that if Martha’s Medicaid lifeline is cut, her only option would be to live in an institution or somewhere else she doesn’t want to be, in order to receive the services she needs such as income support, help with her health care needs and the basic assistance she requires on a daily basis.”

The Arc has accomplished a lot during the past year in helping to protect the Medicaid lifeline that Martha depends on, but there is much more to do in 2013. Your support ensures that The Arc can continue to connect families to our national chapter network, influence public policy and improve systems of support and services to people with I/DD on a daily basis.

In the remaining few weeks of 2012, we have a modest goal: to raise 2013 for 2013. How the numbers add up is up to you. If you can spare $20.13, great! If you can donate $2,013, wow! Even if you can’t spare a dime but would like to stay connected on Facebook, you can help us get to 2,013 new fans by liking and sharing our page with your friends and family. Every little bit helps, not just for Martha but the more than 8 million Americans with I/DD and their families. Remember what Martha says, that everyone “should be able to live like I do!”

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.

The Arc Announces the National Council of Self Advocates

Washington, DC – Today, The Arc is officially launching the National Council of Self Advocates of The Arc (NCSA), and inviting individuals with intellectual and developmental disabilities (I/DD) across the country to join. The first national council of its kind, the NCSA will allow individuals with I/DD to join a network of leaders representing the full spectrum of ages and abilities across The Arc’s national chapter network. While promoting the active involvement of individuals with I/DD in the work of The Arc, this Council will give self-advocates the  chance to support each other and provide learning opportunities as they grow as advocates in their community.

“This Council allows self-advocates to share their unique perspective and truly make an impact in their communities. While we work nationally on behalf of people with I/DD and their families, nothing is quite as powerful as hearing directly from self-advocates about what is important to them. They can be our movement’s strongest messengers, and this council will harness that power,” said Peter V. Berns, Chief Executive Officer of The Arc.

The NCSA was developed to foster the active involvement of individuals with I/DD in the work of The Arc.  Its primary purpose is to empower persons with I/DD to voice their opinions about what is important to them and to ensure that they are afforded the same opportunities as everyone else to have a meaningful life in the community.  In joining the Council, members will be able to network with others who are involved in advocacy work, educate the public about the issues that are important to people with I/DD, and become active leaders in their communities. In addition, the Council will also be promoting leadership roles for individuals with I/DD in local chapters of The Arc and supporting The Arc’s commitment to employing individuals with I/DD.  Learn more about the focus areas of the Council and how to join.

The NCSA is being co-convened by Barbara Coppens, Joe Meadours, and Kurt Rutzen who are all members of The Arc’s National Board of Directors. They each have a deep personal interest in this Council and are looking forward to creating a strong network of self-advocates across the country.

“I am working to educate self-advocates like myself, siblings, and family members to be more involved in advocating for our rights,” said Barbara Coppens, who has a long history of fighting for people with I/DD in New Jersey.  She works tirelessly, educating legislators in New Jersey about why it is so important to remove the “r-word” from state statutes and writing articles on self-advocacy to inspire others like her to join in the movement.

“This is an opportunity for us to voice our opinions and show what self-advocates across the country care about,” Joe Meadours said. “If we don’t have the proper services we won’t have a quality life.”  Joe has been an advocate for many years and wants to use his story to encourage individuals with I/DD to be advocates for themselves and others. He has worked in five states supporting the self advocacy movement; most recently he served as Executive Director for People First of California.

“I believe that The Arc’s National Council of Self Advocates gives the opportunity for people with disabilities to really say what they feel and to get their voices out there in a way they haven’t before,” said Kurt Rutzen, who lives in Minneapolis, Minnesota and works for the University of Minnesota’s Institute on Community Integration. Kurt began his career by conducting interviews for Quality Assurance Region 10, an organization that creates and implements person-centered interviews that enhance the quality of life for persons with developmental disabilities in Minnesota. Through this job, he was introduced to The Arc of Southeast Minnesota.

The Arc Brings Issues Facing People with Disabilities to the White House, President Obama Tells Disability Community “I’ve Got Your Back”

Washington, DC – Today, 150 leaders of The Arc from across the country met with a variety of senior White House officials at a Community Leaders Briefing to ask questions and discuss issues facing people with intellectual and developmental disabilities (I/DD). The session, held just for The Arc, included an unannounced visit from President Barack Obama. The President spoke of his commitment to people with disabilities saying, “I’ve got your back.”

This surprise appearance by the President of the United States was the highlight of the day for many attendees, along with the opportunity to interact with high level government officials about how they can support people with I/DD to live in the community. Over the course of the day, leaders of chapters of The Arc were briefed on topics ranging from Medicaid to education to community living and employment for people with I/DD. Many of the speakers, including President Obama, referenced the impact advocates made during budget negotiations to protect Medicaid, and encouraged The Arc and others to continue these efforts.

Another unannounced speaker was White House Chief of Staff Jack Lew, who reiterated the President’s opposition to turning Medicaid into a block grant. He also took questions from the audience, including Barbara Coppens, a member of the national board of directors of The Arc and a self-advocate who took the opportunity to speak about the importance of self-advocacy by people with disabilities.

“I tell other self-advocates – you’ve got to get out there and advocate for yourself because you can’t rely on other people to make change for you,” said Coppens to Chief of Staff Jack Lew.

The day was organized by Kareem Dale, Special Assistant to the President for Disability Policy, who kicked off the agenda by welcoming guests and speaking about employment issues. The Arc heard from Cecilia Muñoz, Director of the White House Domestic Policy Council, who spoke of their commitment to providing services and supports to all in need. Other speakers included Carol Galante, Acting Assistant Secretary – Federal Housing Administration Commissioner, Department of Housing and Urban Development; Cindy Mann, Deputy Administrator, Centers for Medicare and Medicaid Services; Robert Gordon, Executive Associate Director, Office of Management and Budget; and Tom Perez, Assistant Attorney General for Civil Rights, Department of Justice.

Assistant Attorney General Perez discussed the recent Department of Justice settlement with the Commonwealth of Virginia regarding people with I/DD who live in any of its five institutions who could live in the community. He spoke about the bipartisan work going on across the country to implement the Olmstead decision, which states that under the Americans with Disabilities Act (ADA), unnecessarily institutionalizing a person with a disability who, with proper support, is capable of and who wants to live in the community can amount to discrimination.

After a tour of the East Wing of the White House, advocates from The Arc took part in policy breakout sessions that allowed for more detailed discussions on certain issue areas, like community living, family caregiving, education, and Medicaid. The purpose of these briefings was to allow White House and administration officials to engage in a dialogue with leaders of The Arc about how government policies affect the lives of people with I/DD and impact their ability to live full, independent lives. Given the Department of Education’s announcement yesterday to allow ten states waivers from some of the No Child Left Behind law requirements, the education session with Alexa Posny, Assistant Secretary, Office of Special Education and Rehabilitation Services, was incredibly timely, as were meetings with representatives from the Department of Health and Human Services, Department of Justice, Administration on Aging, and the White House Domestic Policy Council.

“This unique, face-to-face opportunity to speak directly to people in positions to make change from within the government allowed leaders of The Arc to make the voices of the millions of people with I/DD heard at the White House. Our network seized on this opportunity, and we left the White House feeling a sense of accomplishment and inspiration for continued advocacy that we will take back to our communities to help grow our movement,” said Peter V. Berns, CEO of The Arc.

White House Community Leaders Briefing Gallery

A collection of photos from The Arc, taken at the White House for the Community Leaders Briefing February 10, 2012.

Tune in to see The Arc at the White House!

Television image

Tomorrow, 150 leaders of The Arc from across the country will attend a White House Community Leaders Briefing just for The Arc. Over the course of the day, leaders of chapters of The Arc , including people with intellectual and developmental disabilities (I/DD), will be briefed by high level White House and Administration officials on topics ranging from Medicaid to education to community living for people with I/DD, and have the chance to engage with and ask questions of these officials.

You are invited to tune in online. The opening session of the day will be streamed live, courtesy of The White House live feed at www.whitehouse.gov/live from 8:00 to 11:00 AM ET. Participants will also be live-tweeting from the event so feel free to join in by following the #AtTheWH hashtag on Twitter.

You can also share your thoughts by tweeting at @TheArcUS or leaving a comment on our Facebook page.

We hope you are able to tune in and watch this exciting opportunity for The Arc!