2011: The Year in Review

Board Visit November 2011

The Arc's Board of Directors visits the new office in November, 2011.

The Arc has achieved great things in 2011. We had a busy year in 2010 too. With your support, we:

Thank you for your continued support of us in everything we do. We’re looking forward to what we can do together in 2012.

The Arc Announces Major Initiatives for Siblings of People with Intellectual and Developmental Disabilities

Washington, DC – The Arc of the United States is building on the foundation of the organization, founded by families over 60 years ago, by announcing two major initiatives for siblings of people with intellectual and developmental disabilities (I/DD) – a new partnership with the national Sibling Leadership Network (SLN), and the formation of The Arc’s National Sibling Council.

The leadership and active involvement of siblings is critical to ensuring the full inclusion and participation of their loved ones in all aspects of community life.  These exciting new initiatives seek to connect siblings as an important segment of the disability movement to impact policy, service delivery, and the quality of life for the millions of Americans with I/DD.  The Arc’s new sibling initiatives will also provide the necessary support to siblings who are looking for resources and answers to questions unique to them and their family’s future.

“Families, including siblings, built The Arc into what it is today, and these initiatives build upon their decades-long work in the disability movement.  Siblings don’t always recognize their own unique ability to impact their loved one’s life, and the lives of millions of other siblings just like them across the country, just by banding together, supporting each other, and speaking up,” said Peter V. Berns, Chief Executive Officer of The Arc.

Berns added: “There is a tremendous opportunity in communities throughout the country to harness the power of siblings as advocates, working hand-in-hand with their brothers and sisters with I/DD, as a force for change.  Siblings are a critical part of the movement to protect the rights of people with I/DD to be included in society.”

Founded in 2007, the mission of the SLN is to provide siblings of individuals with disabilities the information, support and tools to advocate with their brothers and sisters and to promote the issues important to them and their entire families.  Under this new partnership, the two organizations will develop and offer dedicated programming for siblings at The Arc’s National Convention and other events, including distance learning based programs on topics of interest to siblings, volunteers and professionals of The Arc on sibling issues.  They will also create networking opportunities for siblings using social media tools, support the development of sibling services at state and local chapters of The Arc, and work to establish state and local chapters of the SLN.

“Siblings represent the longest lasting relationship many experience.  As we age, siblings who were once rivals grow closer and we come to rely on each other for essential support, particularly as parents age. Through our partnership with The Arc, we believe that we can make a difference in the long term natural supports of people with disabilities by providing their brothers and sisters the information they need through welcoming communities. By getting siblings involved in the game earlier and more often, we think it can allow siblings and people with disabilities to have more control over the involvement of family in support across the lifespan,” said John Kramer, Sibling and Chair of The Sibling Leadership Network.

Born out of this partnership will be the creation of The Arc’s National Sibling Council.  This new initiative of The Arc will offer opportunities for networking and support to siblings and their families, build a broad network of siblings that support the advocacy and programmatic efforts of The Arc at all levels, offer leadership development and training through involvement in standing and ad hoc committees and task forces of The Arc, and provide face-to-face and online networking and social opportunities.  In addition, The Council will be a place that siblings of individuals with I/DD that may be new to or overwhelmed by their role can turn to when they need guidance or support in situations unique to their family.

The Arc’s National Sibling Council welcomes all siblings and those who support siblings who are members of The Arc either at the local, state or national level.  Those interested in becoming Contributors to the Council, by donating additional funds, will ensure the establishment and sustainability of this essential new program.  Go to our website to learn more about and join the National Sibling Council and take the opportunity to become a Contributor.

“Being a sibling of a person with I/DD is interesting, funny, frustrating, proud, challenging, loving and respectful.  Growing up with my sister Martha, I could usually convince my parents to let her try something they were worried that she could not do by telling them that I would do it with her.  How amazing it would have been to hear another sibling’s stories – to learn how to manage something differently, to share anger, to boast of an achievement that to my friends might seem trivial, but another sibling ‘knows’ the triumph.  The Sibling Leadership Network and The Arc’s National Sibling Council are welcoming networks that identify with siblings, help them connect with information and with other siblings, and learn how to partner and to advocate,” said Nancy Webster, Vice President of the National Board of The Arc of the United States and a sibling of a sister with I/DD.

My Trip to the White House as a Champion for Change

Champions of Change in Washington, DC

Champions of Change at the Embassy of Tribal Nations in Washington, D.C.

By Morgan Fawcett, Self Advocate

I am Lingít, from the Wolf Moiety and Kaagwaantaan from Kook Hít, the Box House. My Lingít name is Sheens and my English name is Morgan Fawcett. I am 19 years old and I live with Fetal Alcohol Spectrum Disorder (FASD). On December 1st, eleven indigenous youth were recognized as Champions of Change at an event at the White House for their work in each of their respective communities. The Champions came from different backgrounds, hometowns, Tribal Nations, and fought for their communities in different ways but they each worked toward the same goal; change, a small word with a huge connotation.  I would like to recognize 10 of the Champions before continuing:

Teressa Baldwin: Native Village of Kiana, LeVon Thomas: Navajo, Madeline Sayet: Mohegan, Desiree Vea: Native Hawaiian, Iko’tsimiskimaki “Ekoo” Beck: Blackfeet, Emmet Yepa: Jemez Pueblo, Lorna Her Many Horses: Rosebud, Tiffany Calabaza: Kewa (Santo Domingo Pueblo), Cassandra Steele: Pomo, and Dallas Duplessis: Alaskan Native.

I was selected as one of the Champions of Change for my family’s efforts to raise awareness and understanding of FASD.  I’m a member of the “Self-Advocates with FASD in Action” network, run by The Arc and the Substance Abuse and Mental Health Services Administration FASD Center for Excellence.  I and the other Champions were brought to Washington, D.C. to be honored for our work and to gain a better understanding of the many ways of leadership. December 1st, the Champions of Change were taken to the Eisenhower Executive Office Building and organized into discussion panels to present our causes to Tribal Leaders and U.S. Government Officials alike. After the panels were completed, we were taken to the West Wing of the White House for a Twitter Question & Answer session. The day was wrapped up with a bus tour of D.C. and a reception, and the events ended after 8 in the evening.

December 2nd, however, was the big day. This day started early in the morning with a trip to the Department of the Interior, to participate in the opening and closing session of the Tribal Leaders Conference put on by the White House. Not only did we get to listen to current legislation and laws that positively affect Tribal Nations and have a basic overview of discussions between the U.S. Government and Tribal Nations, the Champions were able to meet, shake the hand of or hug and take a picture with The President of the United States. Waiting was the hardest part; time seemed to come to a standstill, as time passed, our anticipation grew. But the in the end it was worth the wait. To add to the excitement, President Obama mentioned 3 of the 11 champions in his address to the Tribal Leaders.

To sum up this experience in a few short paragraphs is next to impossible, but in closing I have to say this trip was a wonderful opportunity to grow as a youth leader as well as meet other young people that share a common goal. I wish the best of luck to the other Champions in all of their endeavors. I would like to thank everyone who has helped and supported all of us as we fight to bring about change.

We, as indigenous youth, are riding the winds of change, and we are knocking at your door, but who is willing to answer?

Gunalchéesh ax x’éit yee sa.aaxí (thank you for listening),

Morgan Fawcett

A Visit to Washington: From Nathan’s View

By Nathan Bauer, Self-Advocate for The Arc and Hammer

Thank you for inviting me to share a blog about my trip to Washington DC for Hammer to meet with my friend the great Senator, Al Franken. He is my friend. When I was at The Arc Minnesota town hall at Hammer to testify with Al Franken we had a chance to get to know each other. He talked with me again at Special Olympics and it was just the two of us. We laughed and told jokes. After that Al Franken came to my house for a visit. I showed him around. He asked me to come to Washington to help him advocate for disability rights.

Rena came to my house that day for a Hammer story and she interviewed us for the news on KARE 11. [A quote from Nathan in the interview about the possible budget cuts: “And we going to talk to national leaders at The Capitol and we going to talk about the budget, the money and we don’t need no more cuts.”]

My Mom, Dad, Tim and Lynne from Hammer, and Adrian our cameraman – we all flew to Washington to see Senator Franken and film. That is when I got to visit The Arc’s national office. Thank you to The Arc for showing us how to get to the press conference for the ABLE act and being so nice to my friends and me. Thank you – Peter, Kristen, Sarah, Marty, Maureen, Pat and William.

A Kid Is a Kid Is a Kid…

Reflections From a Different Journey Book CoverBy Tracy Wright, The Arc of Maryland

The following is an excerpt from “Reflections from a Different Journey: What Adults with Disabilities Wish All Parents Knew” sharing Tracy’s perspective on what she wishes her parents had known about raising a child with a disability 30 years ago. Now an adult, Tracy lives in Rockville, MD with her son and her service dog, working at The Arc of Maryland and volunteering for other organizations helping people with intellectual and developmental disabilities.

Two things that my parents should have known while I was growing up are the importance of treating me like any other kid and how to talk openly about disabilities. If they had done that, I would not have spent so much time worrying that it was my fault that I was being treated differently. It also would have helped me to know that I was smart and could learn things, just in a different way.

When I was young, I went to a special education wing in my school. We were kept away from the regular population. It made it hard to know how to make friends and build relationships with people. This didn’t prepare me for the things that were going to be expected of me outside of the special education wing. If I would have been treated the same as other kids in the family and we talked about my disability, it would have helped me to think about my future. No one ever asked me “What do you want to be when you grow up?” My family members were afraid to talk about this because no one knew what my future could be.

Kids with disabilities are going to grow up. They need to think about a future and plan like anybody else. If we had been more open about my disability, maybe we could have talked about my future. We also might have looked for more options, rather than just where the “special” people went to live.

Remember, when you get caught up in the whole disability thing, enjoy all your children. Even try to enjoy the struggles—it will make you a better person. Disability does not have to be this bad thing that people cannot get past to enjoy and live life. You just might have to go about it in a little different way.

Want to learn about “Reflections from a Different Journey: What Adults with Disabilities Wish All Parents Knew”? (McGraw-Hill, 2004; DisABILITIESBOOKS, 2011)  Visit www.disabilitiesbooks.com. A portion of sales benefits The Arc. When you order online, please enter “The Arc” into the Your Comments space at the end of the Payments page. To order by mail: send $31 to: DisABILITIESBOOKS, 44 Washington Street, #913, Brookline, MA 02445. Write The Arc on your check.

Shooting Beauty

I was approached to preview a new documentary film about an aspiring fashion photographer whose career takes an unexpected turn when she discovers a hidden world of beauty at a day program for people living with significant disabilities. Shot over a decade, the film puts you in the shoes of Courtney Bent as she overcomes her own prejudices when she begins adapting cameras for the individuals at the program, providing them the opportunity to take pictures and videos from their own unique perch (many of them are in wheel chairs).  Making video and photography accessible for these new photographers to document their world and their interpretation of “beauty” enables us to see a whole different kind of documentary.

Shooting Beauty presents an opportunity to see beauty from a different vantage point. As an organization focused on people with intellectual and developmental disabilities, The Arc appreciates the respectful and sensitive way the filmmakers reflected Courtney’s transformation while showcasing the characters’ growing artistic perspectives. It’s an excellent depiction of what it means to be able to fully participate in one’s community through artistic expression.  I enjoyed watching the film come together and think you will too.

There’s some buzz building up about this film, with the Girl Scouts of the Nation’s Capital launching a patch program for it and Best Buddies International officially partnering with the producers to screen it. And, now the producers have officially launched a website dedicated to promoting the film and it’s many programs. Check it out at www.shootingbeauty.org and be sure to leave a comment telling us what you think.

Blue Beanie Day 2011: Celebrating Web Standards

Blue Beanie Day 2011 with Logo

Blue Beanie Day 2011, celebrated by The Arc's web crew: Kevin Wenzel and David Kennedy.

Today, The Arc’s web team donned blue beanies. Kevin Wenzel (The Arc’s web producer) and I got a few strange looks, even after he sent out a staff-wide email explaining why web designers and developers everywhere put on blue beanies today.

Colleagues keep asking us and we’ll keep telling them why. We support web standards and the hats signify that we’ll follow that set of best practices for standardized, accessible, universal web design and development.

In the past 18 months, The Arc has made a lot of progress toward doing a better job embracing web standards. We redesigned our main website, rolled out three new blogs and launched two additional sites – keeping web standards in mind from the very beginning. Right now, we’re working hard toward making small tweaks on the back-end of our sites that will make a big difference when it comes to web standards and web accessibility. We’ll share more on that as we move forward.

In the meantime, at least you know why web staffers everywhere are wearing blue beanies, and why Kevin and I look a bit like lumberjacks today.

Hammer Travel and Becky Meet The Big Apple

The Arc and Hammer Travel have had a long standing friendship and partnership working for a common cause. For the last few years Hammer Travel has even been the exclusive travel sponsor for The Arc’s national convention.

Through this partnership, The Arc and Hammer have helped a number of individuals with intellectual and developmental disabilities travel and pursue dreams that otherwise would have seemed unattainable. A particularly moving story is Becky Wilkinson’s journey to New York.

Group shot at Central Park with Becky and Hammer Travel

Group shot at Central Park with Becky and Hammer Travel.

Becky, 27, always dreamed of traveling to New York City. Unfortunately, living with Cerebral Palsy and Arthrogryposis makes traveling a challenge both physically and financially for Becky and her family. Luckily, Susan Wilkinson, Becky’s mom, was forwarded an email from The Arc of The United States highlighting Troy, an individual with an electric wheelchair, who had recently gone on a trip with Hammer Travel.

After contacting Hammer Travel to learn more about ways to make travel accessible for individuals like her Becky, Susan had new hope. She soon started a fundraiser to get the $2,220 needed for the trip. Susan even emailed an array of celebrities in hopes of finding someone interested in helping Becky.  Finally, her work paid off when Rory Albanese, a comedian and executive producer of The Daily Show with Jon Stewart, offered to donate the outstanding balance needed for the trip. In an even more generous gesture, Rory asked for Becky’s itinerary and offered a personal tour of The Daily show studio.

Jon Stewart with Hammer Traveler’s Becky and Michael

Jon Stewart with Hammer Traveler’s Becky and Michael.

This past October, Becky’s dream came true as she joined five other individuals with intellectual and developmental disabilities on a trip to New York City with Hammer Travel. While in New York, Becky and the group viewed a taping of the Today Show, met the hosts, visited the Statue of Liberty, Top of the Rock and Rockefeller Center, Central Park and the Guggenheim Museum. One of the most exciting parts of the trip was a VIP taping of The Daily Show with Jon Stewart, where Becky was able to meet Rory Albanese and thank him for funding her trip to New York. The entire group was able to meet John Stewart after the taping as well.

Becky and Rory

Becky and Rory on the Daily Show set.

More photos available in a Facebook album.

Video available above with an extended version on Hammer Travel’s YouTube channel.

Becky’s story is a reminder that dreams can come true. We thank Hammer Travel for their work to make this dream a reality and welcome your stories as well!

Tuning In

Old RadioThese days, there’s a lot of talking going on. In the disability world, if you turn the radio dial, you can switch the stations from diagnosis, early intervention, and how to manage the new identity of being a family connected to a child with an intellectual and developmental disability. A few clicks up and the voices are talking about friends, inclusion, transition, and a few words on jobs and post-secondary education. Self-advocacy is heard, in some coverage areas. Turn the dial even further and words about community living, placements, institutions, sheltered workshops, supported jobs and community-based employment fade in and out. Futures planning, special needs trusts, and what to do now that Mom and Dad are old themselves. Siblings. Family support. And through it all, you hear: where are the resources to help us…

In the middle of the audible voices is a lot of static. White noise relating, perhaps, to the day-to-day survival, the daze of home to school to work to home to family in any given day; the disconnect between that and the sharp always unanticipated disruption of when the supports fall away. In some places, there is no noise at all.

The Arc is Listening

I wonder who is listening. I wonder what families are going to do.

The answer comes to me: The Arc is listening. The Arc helps families help themselves, as we’ve been doing for more than 61 years. From the listening sessions at our Annual Convention where people were given open access to a microphone in front of the Board, to hear what they wanted to say…. To our Autism NOW Center that reflects an array of information resources for people with autism and other developmental disabilities and their families… to the opportunities we give to the nation to get families involved in advocacy, in membership, participation or leadership at local, state and national levels, in working with us to advance better options for people with I/DD and their families. Our 50 Chapters that are involved in designing customized School to Transition Programs to help young adults adapt to life after high school. Through all of these, there is a listening process occurring, and we are collectively learning from all of you. Only if we listen, can we learn and grow. Only if others express their thoughts, their preferences, will there be something to learn from and something to share.

Get Involved

The Arc has always been about supporting families, and supporting those they are connected to: people with intellectual and developmental disabilities. If you are a family member and haven’t gotten involved in The Arc, think about it. If you’ve thought about creating a new Chapter, go for it. Yes, YOU. If you’ve thought about honoring us with your time, we’d love to have you with us. Now, more than ever, tuning in and getting involved in the dialogue is so important; our country is going through monumental changes that have every possibility of affecting the daily options that we have to choose from.

We’re here. We’re listening. Tune in, wherever you are, any place on the dial.

Reaction from The Arc on The Super Committee Not Reaching a Deal

Washington, DC – As the nation’s largest organization working on behalf of people with intellectual and developmental disabilities (I/DD), The Arc’s CEO Peter V. Berns released the following statement on today’s announcement that Members of the Joint Select Committee on Deficit Reduction have not reached a deal to reduce the nation’s deficit by at least $1.2 trillion over 10 years.

“Throughout the Committee’s process, The Arc advocated for protecting Medicaid, Medicare and Social Security because the budget cannot be balanced on the backs of people with disabilities. It is disappointing that the Committee could not come to an agreement that would have protected these critical programs while ensuring significant revenues were part of the solution. Unfortunately, no deal at the moment leaves lots of unknowns for the rest of the programs on which people with disabilities rely on to live independent lives.

“The Arc believes we must strengthen the economy while protecting the lifelines of people with disabilities, and to honor that commitment, bring in sufficient revenues to provide necessary services. We appreciate Members of Congress who stood their ground and opposed deep cuts to Medicaid, Medicare and Social Security.

“We recognize that this was a missed opportunity, when Members of Congress could have worked across party lines and found a solution to a deficit and revenue problem facing us all – young and old, people with disabilities and without, wealthy and poor. It will take a true bipartisan effort to ensure a secure future for people with disabilities, the elderly, and low income people. Individuals with disabilities, their families, and the professionals who support them will continue to monitor the budget process and advocate for their lifeline.”