Tag Archives: The Arc

Martha and Me

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By Nancy Webster, Vice President of the Board of Directors of The Arc of the United States.

Nancy and Martha Webster

“Martha inspires me in many ways and we are a wonderful and strong team.” – Nancy Webster, sister of Martha and Vice President of the Board of Directors of The Arc of the United States.

Being a sibling of a person with an intellectual or developmental disability (I/DD) is interesting, funny, frustrating, proud, challenging, loving and respectful.  A long-lasting relationship that adapts and evolves, it’s a partnership that not everyone understands.  But other siblings do.

In any family, brothers and sisters often think of themselves and each other very differently from the ways parents do.  Even when we were young, I could usually convince my parents to let Martha try something they were worried that she could not do by telling them that I would do it with her.  It was my belief in her that gave her the courage to learn how to swim, climb up the slide and care for her prosthesis.  Today, when Martha wants to try something, we team up to figure out how to tell and show others, “here’s how it can work.”   We know we’re stronger together, and so together we have learned advocacy.  Martha calls us “the sister team.”

“Martha inspires me in many ways and we are a wonderful and strong team.”

I often think how wonderful it would have been for us to grow up knowing other siblings.  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.

Frequently I talk with adult siblings whose parents are aging and are now facing the challenge of learning all of the intricacies of supporting his or her sibling.  In the interest of “protecting” them, their parents have not shared information.   Where can they turn for guidance and support?  The Arc’s National Sibling Council is a welcoming network that identifies with siblings and helps them connect with other siblings to share information and experience.  It is exciting to think that I can call someone and ask “how did you know how to….?” “What can we do about…?”

This is an opportunity to connect and improve the lives of future siblings and make their paths less daunting. I’m thrilled to share Martha’s and my story, and I hope you join me on The Arc’s National Sibling Council.

2011: The Year in Review

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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.

Tuning In

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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.

Exciting News in Nevada!

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The Arc in NevadaThe Arc is happy to announce the launch of the “Growing a Grassroots Advocacy Movement” project in Nevada! This exciting new opportunity is being funded by the Nevada Governor’s Council on Developmental Disabilities. The Arc in Nevada will work to develop long-term capacity for advocates to have input and impact on issues of importance to people with developmental disabilities and their families.

With the launch of this new program, The Arc will have a statewide presence in Nevada for the first time since the mid-nineties.  The project will train individuals with developmental disabilities and family members on how to impact disability policy at the local, regional and state levels, culminating in a grassroots campaign.

The training, called Partners Plus, will be conducted across the state, targeting graduates of previous Nevada Partners in Policymaking classes.  This project will work to train people with disabilities and their families (parents, siblings, grandparents, other family members), primarily those who have previously completed the original Partner in Policymaking classes.  Participants from The Arc in Nevada’s programs will develop a legislative advocacy platform with specific actions during the 2013 Nevada legislative session.  In an effort to develop lasting impact of the trainings,  some participants will work  to train others in their local communities, involving advocates at all levels  in the execution of the legislative platform and advocacy agenda.

In addition to the Partners Plus program, The Arc in Nevada will expand efforts to support individuals with I/DD and their families through new chapter recruitment, grassroots advocacy development, and collaborative efforts with communities across Nevada.

This project will be staffed by a new member of The Arc team, Nicole Schomberg. Nicole has expertise in advocate engagement and community outreach. Most recently, Nicole worked to coordinate previous Partners in Policymaking programs in the state.  Additionally, Nicole is a parent of a child with developmental disabilities, and has extensive experience working with families and self-advocates in Nevada. If you are in Nevada and interested in participating in The Arc’s project contact Nicole at: schomberg@thearc.org.

The Arc in the News!

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The Arc has been getting great news coverage both nationally and locally in the last few weeks. We wanted to share with you some of the most exciting stories.

  • New York Daily News – The Arc responds to Congresswoman Bachmann’s comments about vaccinations causing “mental retardation”.
  • msnbc.com – CEO of the Arc Peter V. Berns discusses the use of the R-word, and why it is unacceptable. This is also in response to Congresswoman Bachmann’s comments, but focuses more on the use of derogatory language to people with intellectual and developmental disabilities as opposed to the lack of evidence for her claims about vaccinations.
  • NBC 9 News in Denver – A great piece about The Arc’s 60th Convention in Denver including an interview with CEO of The Arc, Peter V. Berns, footage of the convention, and an interview with an all-star volunteer and self-advocate Ann Rossart.

Check our blog to see the latest news clippings about The Arc! You can also see news stories, archived on our The Arc in the News page.

The Arc Announces “Achieve with us” Social Media Contest Winner

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Washington, DC – In June, The Arc announced the first ever “Achieve with us” social media contest, inviting individuals with intellectual and developmental disabilities (I/DD) to share their stories of achievement.  All entries were submitted through The Arc’s Facebook fan page, and today, The Arc is announcing the winner of this nationwide contest – Tyler Smothers from Cedar Rapids, Iowa.

Out of 119 contestants garnering more than 25,000 votes, Tyler was the top vote getter in the contest and was selected for his impressive fundraising work for a local chapter of The Arc. Tyler is the driving force behind The Arc of East Central Iowa’s annual bike riding fundraiser “Tour de Flood.”  Tyler helped create this event in 2008 to help raise money for flood relief. The goal was to raise $2,000, but by the end of the event, over $18,000 was donated.  Using an adaptive bike, Tyler leads the ride, in spite of the challenges presented by Occipital Encephelocele, which causes Arnold Chiari Malformation type III. This fundraiser has become a celebrated annual event that continues to raise tens of thousands of dollars every year for The Arc of East Central Iowa’s enrichment programs for all ages, greatly due to Tyler’s passion and dedication. This year’s race will be on September 18th.

Tyler and his mother will receive a trip for two for two days to Washington, DC, to share his story of achievement with The Arc’s National Office.  He will also have an opportunity to meet with members of his Congressional delegation or their staff to discuss his work on behalf of the people of Cedar Rapids.

Tyler was thrilled to hear he was the winner of the contest and said, “This is so exciting and awesome, I am going to love going to Washington, DC.” He is very enthusiastic about his trip to DC and looks forward to potentially meeting members of the Iowa delegation and said he hopes to meet President Obama and the First Lady as well. When asked what he will say when he comes to Washington, he said, “I am going to tell them living with a disability is challenging.”

“Tyler Smothers embodies The Arc’s belief that for all people with intellectual and developmental disabilities, achieving your goals and dreams is possible with drive, determination, and support from family and friends.  This social media contest was successful beyond our expectations, and shows the power of people with intellectual and developmental disabilities in their communities,” said Peter V. Berns, CEO of The Arc.

The Arc advocates for and serves people with I/DD, including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of over 700 chapters across the country promoting and protecting the human rights of people with I/DD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

Who’s a Top NonProfit? The Arc!

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The Arc has been chosen as one of the top nonprofits working for people with disabilities by Philanthropedia, a subsidiary of GuideStar, a nonprofit organization working to make you aware of the highest impact nonprofits in a cause. The Arc was selected as one of eleven high-impact nonprofits in the disability field by a group of 79 experts, including foundation professionals, nonprofit senior staff, academics, and researchers.

So what, exactly, does it mean to be “high impact?” The experts at Philanthropedia evaluated each nonprofit based on their ability to carry out their mission, organizational strengths and, most importantly, evidence of the impact they are achieving on behalf of the people and communities they serve. According to one expert who reviewed The Arc’s submission, “The Arc is the nation’s touchstone for individuals with intellectual disabilities and their families. The Arc has become the national center for information dissemination. In addition, its leadership has committed itself to ensuring that Washington keeps people with disabilities in the forefront when making important employment, health care and related decisions.” That means donors and supporters can feel comfortable with The Arc, secure in the knowledge that this organization is adept at channeling that support into activities that truly have a “high impact” on the people they serve.

Philanthropedia, acquired by GuideStar in April 2011, is unique from other online rating sites or donation sites because they use experts to identify high-impact nonprofits. GuideStar is the industry leader in nonprofit data with information on more than 1.8 million nonprofits.

“We are honored to have received this distinction from Philanthropedia and GuideStar. For the last 60 years, The Arc has led the movement for improving the lives of individuals with intellectual and developmental disabilities. In order to continue our mission, we need the support of donors, advocates, and dedicated professionals in the disability field, and this acknowledgement can only help us grow at all levels, nationally and in local communities across the country,” said Peter V. Berns, The Arc’s CEO.

Have you considered supporting The Arc? To read more about what experts in the field have to say about us, click on the Expert Reviews section on The Arc’s organization profile. And, check out www.thearc.org for more about what we do. We have been honored by BBB/Wise Giving Alliance and American Institute on Philanthropy and the recently released Charting Impact initiative as well. We’d love for you to join us!

The Arc Selected as a Top Nonprofit Working for People with Disabilities

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WASHINGTON, DC – The Arc has been chosen as one of the top nonprofits working for people with disabilities by Philanthropedia, a subsidiary of GuideStar, which is a nonprofit organization working to help make the public, including donors, aware of the highest impact nonprofits in a cause.  The Arc was selected as one of eleven high-impact nonprofits in the disability field by a group of 79 experts, including foundation professionals, nonprofit senior staff, academics, and researchers.

The experts evaluated each nonprofit based on their ability to carry out their mission, their organizational strengths and, most importantly, evidence of the impact they are achieving on behalf of the people and communities the nonprofit serves. According to one expert who reviewed The Arc’s submission, “The Arc is the nation’s touchstone for individuals with intellectual disabilities and their families. The Arc has become the national center for information dissemination. In addition, its leadership has committed itself to ensuring that Washington keeps people with disabilities in the forefront when making important employment, health care and related decisions.”

Philanthropedia, which was acquired by GuideStar in April 2011, is unique from other online rating sites or donation sites because they use experts to identify high-impact nonprofits.  GuideStar is the industry leader in nonprofit data with information on more than 1.8 million nonprofits. And, as an industry leader, GuideStar has a national audience of millions of professionals, funders, advisors, individuals, and others.

“We are honored to have received this distinction from Philanthropedia and GuideStar.  For the last 60 years, The Arc has led the movement for improving the lives of individuals with intellectual and developmental disabilities.  In order to continue our mission, we need the support of donors, advocates, and dedicated professionals in the disability field, and this acknowledgement can only help us grow at all levels, nationally and in local communities across the country,” said Peter V. Berns, The Arc’s CEO.

To read more about experts in the field have to say about The Arc, click on the Expert Reviews section on The Arc’s organization profile.  All the information collected from the research is available on Philanthropedia’s website and will shortly be available on GuideStar Take Action’s website.

The Arc has also been honored by BBB/Wise Giving Alliance and American Institute on Philanthropy and the recently released Charting Impact initiative as it works alongside its network of over 700 chapters to implement is high impact practices in its own governance and management.

Are You Coming to Denver?

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Lucky Strike Lanes

Lucky Strike Lanes

There’s still time to take advantage of early bird rates for The Arc’s National Convention September 16-19 in Denver, CO. Register now and make your reservations at The Sheraton Downtown Denver and get discounted rates saving you hundreds on your trip to the biggest and best opportunity to connect with the intellectual and developmental disability community this year. We’ve extended early registration discounts until August 19 and hotel room discounts are valid until August 14.

We’re expecting a huge crowd for 3 days of informative and inspirational sessions on topics important to people with intellectual and developmental disabilities (I/DD) and those who serve them such as:

The Medicaid Crisis, Waiting Lists, Voting, Protecting Social Security, Supporting Families Holistically, Providing Leadership for a Stable Organization, Special Needs Planning for Parents, Self-Advocacy Initiatives, Social Enterprise, Involving siblings and Affordable Housing.

And, don’t miss The Arc and Sprout National Film Festival Luncheon spotlighting people with I/DD or the spectacular Opening Event hosted by The Arc Thrift Stores and The Arc of Colorado at Lucky Strike! Only a short time left to scoop up early bird rates, so don’t delay. Register now here.

Need help getting to Denver? No problem. Hammer Travel is the official travel sponsor of The Arc’s National Convention offering customized, comprehensive travel arrangements for individuals with intellectual and developmental disabilities and their families. Visit www.hammertravel.org or call 1-877-345-8599.

Special Thanks to our 2011 National Convention Sponsors: AGS, Diversified Nonprofit Services, Essential Learning, Hammer Travel, The HSC Foundation, Irwin Siegel Agency, Inc., Liberty Mutual, Medisked, MetLife, Managance Consulting, Mutual of America, Rest Assured, Simply Home, Tandem Select, Arc Thrift Stores of Colorado and Trips, Inc.

The Arc Celebrates the 21st Anniversary of the Americans with Disabilities Act

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Washington DC – The Arc of the United States today celebrates the 21st anniversary of the Americans with Disabilities Act (ADA). This landmark civil rights law was created to eliminate discrimination against people based on their disabilities.

“Today serves as a reminder to us of not only how far we have come in the last 21 years, but of how much there is still left to do,” said Peter V. Berns, Chief Executive Officer of The Arc. “The ADA has empowered millions of individuals with disabilities over the last two decades, yet there is still much discrimination facing individuals with intellectual and developmental disabilities. This anniversary should serve as a call to action – our work will not be complete until there is full inclusion and equality for individuals with disabilities.”

The ADA protects the civil rights of individuals with disabilities in employment, state and local government services, privately operated public accommodations (hotels, restaurants, stores, museums, etc.), transportation, and telecommunications. A person with a disability, as defined by the ADA Amendments Act of 2008, is someone who has a physical or mental impairment that substantially limits one or more major bodily functions or major life activities, a person who has a history or record of such impairment, or a person who is regarded as having an impairment.

The ADA’s integration mandate has helped many individuals with intellectual and developmental disabilities (I/DD) leave institutions and move to community based settings. However, there are still many individuals living in nursing homes and other types of institutional settings who could and who want to live in more integrated settings.

The Arc advocates for and serves people with I/DD, including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of over 700 chapters across the country promoting and protecting the human rights of people with I/DD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.