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The Arc’s Leaders Invited to the White House for High Level Briefings and to Advocate for People With Disabilities

/in /by The Arc

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

“This opportunity comes at a pivotal time for The Arc in our work to advocate for people with intellectual and developmental disabilities. Our chapter leaders will add an invaluable perspective, from the front lines of our movement, in our ongoing conversations with senior officials at the White House. I’m looking forward to The Arc’s network flooding the halls of the White House and listening to advocates from across the country tell their stories,” said Peter V. Berns, CEO of The Arc.

During the day-long event, participants will hear from senior White House and administration officials. Additionally, there will be a series of policy breakout sessions that will allow for more detailed discussions on certain issue areas, like community living, education, and Medicaid. The purpose of these briefings is to allow White House and administration officials to hear from leaders of The Arc about how government policies affect the lives of people with IDD and impact their ability to live full, independent lives. This unique, face-to-face opportunity to speak directly to people in positions to make change from within the government will allow leaders of The Arc to make the voices of the millions of people with IDD heard at the White House. As The Arc gears up to raise awareness of IDD during Developmental Disabilities Awareness Month in March , chapter leaders can take home new tools to help individuals in their communities utilize programs of the federal government.

“The Arc, as one of the largest organizations working with people with intellectual and developmental disabilities, brings a wealth of experience and insight to discuss today’s most important concerns facing persons with intellectual and developmental disabilities. We’re looking forward to having them here at the White House to deepen our partnership, and to discuss the issues we care about most,” Jon Carson, the Director of the Office of Public Engagement at the White House.

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Welcoming Amy Goodman to The Arc

/in /by Guest Blogger

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.

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Apostrophe Magazine Cancels “Can’t”

/in /by Guest Blogger

By: Jim Tracy, Editor of Apostrophe Magazine

Can’t and shouldn’t. Too often those words turn into “could have” and “should have” — regrets about lost opportunities. Apostrophe magazine helps turn “can’t” and “shouldn’t” into “can” and “should.”

The name comes from a song by the late rocker Frank Zappa about a man talking to his dog. We all can relate to that, but in Zappa’s song, the dog talks back.

“You can’t say that!” the man tells the dog in disbelief. “I do it all the time,” the dog replies. He talks, he says, even with all the apostrophes thrown his way: can’t, won’t, don’t and shouldn’t.

People with disabilities face the same apostrophes. Too often they’re told what they can’t do. Apostrophe magazine emphasizes what they can do. Every issue features stories about people living productive lives and achieving success at home, at work and at play.

Lissie Clark, a 34-year old businesswoman from Great Falls, Mont., is a good example. Lissie has overcome fetal alcohol syndrome and other obstacles to start a successful business. Today, she operates Lissie’s Luv Yums, baking and selling all-natural dog biscuits to customers across the United States. At the same time, Lissie uses her business to educate people about the dangers of alcohol consumption when you’re pregnant.

Apostrophe also gives readers practical information they can use every day. A staple of the magazine are how-to features. In past issues we’ve explained, using words, graphics and photos, how to make a hearty clam chowder, how to paint a room and clean up afterward, how to plant a vegetable garden, how to build a birdhouse, how to shop wisely for groceries, how to file a tax return, and how (and where) to vote.

In “It’s the Law,” Disability Rights lawyers have written about guardianship, end of life issues and the Olmstead Decision. We tell our readers about websites worth visiting and books worth reading. A recent issue included a review of The Everyday Guide to Special Education Law and the companion workbook.

Every issue includes a column by a writer from People First. Contributors have explained to Apostrophe readers the marriage penalty, self-advocacy and the campaign to end the use of the “R” word. The Winter 2012 issue introduces “Jigsaw,” a cartoon strip created by Tess Langston, a young woman with autism.

Like The Arc, Apostrophe believes in promoting and protecting the human rights of people with intellectual and developmental disabilities and supporting their full inclusion and participation in the community as long as they live. We share The Arc’s core values of people first, equity, community, self-determination and diversity.

We believe the power of the pen (and the camera) can help make that philosophy a reality. Our stories and photos show people achieving independence, contributing to their communities and enjoying life. We emphasize human dignity and take pains to use people first language.

A subscription to Apostrophe (4 issues for $19.99) will help us deliver our most important message: “Forget Can’t and Don’t — We Can and Do.”

NOTE: The Arc has established a relationship with Apostrophe Magazine to bring you a valuable new resource and a refreshing perspective on what a publication for people with disabilities can be. You’ll find guest columns from The Arc in the pages of Apostrophe and on their blog in the coming months and below is a guest post from the editor of the magazine.

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The Arc Responds to the U.S. House of Representatives Vote to Repeal the CLASS Program

/in /by The Arc

Washington, DC – The Arc of the United States, released the following statement in response to the U.S. House of Representatives vote to repeal the Community Living Assistance Services and Supports (CLASS) Program.

“Repealing the CLASS Program could force Americans to wait another generation for a solution to the need for long term services.  This bill doesn’t change the fact that many Americans require these services, and it certainly doesn’t relieve the pressure off of Medicaid so that Medicaid can better serve the needs of low income communities.  This vote won’t be the last say on this issue, and The Arc stands ready to work with Congress and the Administration to find a workable solution,” said Peter V. Berns, CEO of The Arc.

The Community Living Assistance Services and Supports (CLASS) Program was created by the Affordable Care Act to help working adults prepare for their future in the event they need help maintaining independence in the community. If CLASS is not implemented, the Medicaid program will continue to take on the load of long term service needs for many individuals. Average home and community-based care now costs over $21,000 per year.  Few Americans have insurance to cover these costs.  Only 3% have private long term care insurance and the majority are forced to impoverish themselves to qualify for Medicaid.

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Make Your Mark This Election Year

/in /by The Arc

Each year, hundreds of advocates attend the Disability Policy Seminar in Washington, DC to learn more about and discuss the hottest topics in disability public policy. We invite you to join us April 23-25 for your biggest and best opportunity to advance the grassroots movement for people with intellectual and developmental disabilities (IDD). This year it is even more important to attend the Seminar and have your voice heard as we approach a pivotal presidential election in November.

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

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

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

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

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

/in /by The Arc

Washington, DC – The Arc, the nation’s largest and oldest human rights organization for people with intellectual and developmental disabilities (IDD) 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 IDD.

“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 IDD 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.

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What Would You Ask the White House?

/in /by The Arc

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

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

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

Please share with us any questions you get answered by tagging us on Twitter at @thearcus.

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The Arc Responds to Potential Change in Definition of Autism

/in /by The Arc

Washington, DC – The Arc is the nation’s largest and oldest human rights organization for the people with intellectual and developmental disabilities (IDD), serving more than a million individuals and their families including people with autism, Asperger’s syndrome, and pervasive developmental disorder, not otherwise specified (P.D.D.-N.O.S). In response to the news that the American Psychiatric Association is working on revisions to the definition of autism, The Arc issued the following reaction:

“Over the last decade, we have made major strides in ensuring that people diagnosed with autism, Asperger’s syndrome, and P.D.D.-N.O.S. have access to the services that advance their health, education, independent living skills, and work skills. These efforts have increased inclusion in educational settings, and, in society, young adults with disabilities are gaining life skills that can lead to jobs and independence. The unintended consequences of a diagnostic definition change could potentially limit access to the services that children and adults with autism and P.D.D.-N.O.S. need, potentially putting at risk their education, and the health and economic stability of their own lives and the lives of their families,” said Peter V. Berns, CEO of The Arc.

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The Arc Joins in Filing Supreme Court Amicus Brief on Affordable Care Act

/in /by The Arc

WASHINGTON, D.C. – The Arc released the following statement upon joining other organizations in filing an amicus brief to the Supreme Court in advance of consideration of certain provisions of the Affordable Care Act. This particular effort focuses on the individual mandate to obtain health insurance, with the overarching goal of coverage for all Americans, including people with intellectual and developmental disabilities.

“Without a doubt, the Affordable Care Act is the most significant law for people with disabilities in over twenty years. The threats to the individual mandate to obtain health insurance are too dangerous for us to sit on the sidelines. Without an obligation to buy health insurance, our country won’t be able to make significant strides toward covering everyone, including people with pre-existing conditions. The individual mandate will reduce costs in the entire health care system. The Arc won’t waiver in our commitment to this law and the real changes and cost savings to our system that will undoubtedly benefit people with disabilities, their families, the workers that support them, and our entire nation,” said Peter V. Berns, CEO of The Arc.

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The Arc Announces New Office in Nevada to Serve People with Disabilities and Their Families

/in /by The Arc

Washington, DC – This month, The Arc of the United States announced the launch of the “Growing a Grassroots Advocacy Movement” project in Nevada. This program, funded by the Nevada Governor’s Council on Developmental Disabilities and The Arc of the United States, will work to develop long-term capacity for advocates to have input and impact on issues of importance to people with intellectual and developmental disabilities (IDD) and their families.

The launch of this project will mark the first time The Arc will have a statewide presence in Nevada since the mid-nineties. Specifically this project will train individuals with developmental disabilities and members of their families 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.

“The Arc is very excited about this opportunity to serve Nevada on a statewide level for the first time in over a decade. This is a wonderful chance to empower individuals with intellectual and developmental disabilities, as well as their family members, to be advocates and influence disability policy right in their own backyard,” said Peter V. Berns, CEO of The Arc.

In addition to the Partners Plus program, The Arc in Nevada will expand efforts to support individuals with IDD 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’s team, Nicole Schomberg. Nicole is a parent of a child with developmental disabilities, and has extensive experience working with families and self-advocates in Nevada.