Welcoming Amy Goodman to The Arc

Amy GoodmanBy Amy Goodman, Co-Director, The Autism NOW Center

Hello, my name is Amy Goodman and I joined the Autism NOW team in November as the new co-director. I live in Harper’s Ferry, West Virginia, and I am on the Autism Spectrum. I learned about my disability at a later stage in life, actually at the age of 33. My brother’s friend suggested that I try to get diagnosed. My brother claims it all started with the Grateful Dead. If it weren’t for Dead Net Central, he wouldn’t have ever met this friend. I finally found what I was looking for, answers to my questions and a diagnosis.

I was relieved to finally have a diagnosis and a name for some of the issues I was having. With that diagnosis, I was finally able to put my life in perspective and focus on who I am. It was because of this new found information that I went to graduate school and got my degree in Special Education with a focus on Autism at Marshall University in Huntington, West Virginia. I was accepted into a separate program at the Autism Training Center (ATC), at Marshall for students with Asperger’s syndrome/High Functioning Autism (HFA), which gave me academic support, individual support, and social skills I needed to live independently in my own apartment. I was the first graduate student, the first female, and the first individual to graduate from the ATC.

After graduate school, I worked as a Service Coordinator for Birth to Three. I had that job for about four years and I decided I needed to change my focus and get a job that applied my talents in a different way and helped to support me as an individual. I applied and looked for a job for more than a year and a half, and then I finally tried something I thought I would never do, networking. It paid off and I got a job at The Arc as co-director of Autism NOW. I have been at this job for about two and half months and I love it and everything about it.

The job at the Arc has given me my independence in many ways. I now am self-sufficient, I am an advocate for myself and I am empowered to be who I want to be. I have proven once again that individuals with ASD can and should be hired to work to the best of their ability.

The Arc’s Reaction to the Department of Justice and Commonwealth of Virginia Settlement Regarding Institutions

Washington, DC – The Arc, the nation’s largest and oldest human rights organization for people with intellectual and developmental disabilities (I/DD) serving more than a million individuals and their families, issued the following statement on the news that the Commonwealth of Virginia has reached a deal with the U.S. Department of Justice regarding four of its institutions for people with I/DD.

“This settlement is a big step forward in bringing people with intellectual and developmental disabilities out of the shadows and into communities across Virginia, where they belong.  The Department of Justice’s commitment to monitoring and oversight of the implementation of this agreement will be key to ensuring that the shift to community based services away from institutions will be successful for people with I/DD in Virginia.

“The Arc of Virginia and the network of chapters across the state have been instrumental in putting this agreement in place.  They will continue their work at the state capitol to advocate for additional resources for people with disabilities so that they can move off of waiting lists and begin receiving the supports they need to live independent lives in the community,” said Peter V. Berns, CEO of The Arc.

Site Issues with thearc.org

As of 10 a.m. Tuesday, January 24, The Arc’s main website – www.thearc.org – is experiencing ongoing problems with the following functionality:

  • logging into your online community profile.
  • logging into secure areas.
  • viewing some content, like our Find a Chapter Directory.

We are working hard to correct the problems, and appreciate your patience.

We’ll post updates here as we work through the issues.

Update: 11 a.m., January 25, 2012 – We’re continuing to experience issues with our main website, resulting in limited functionality for many users. We apologize for the inconvenience, and appreciate your patience.

Martha and Me

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

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

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!

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!

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

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!

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!