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March Is the Month to Make Your Mark

/in /by The Arc

March is Developmental Disabilities Awareness Month thanks to a 1987 Presidential Proclamation from Ronald Reagan, which was the direct result of the advocacy efforts of The Arc. A lot has changed since then, more people with intellectual and developmental disabilities (IDD) are living and thriving in their communities rather than institutions, there are more opportunities, more protections and more respect for and inclusion of people with IDD in their communities. But we must remember that many of those advancements were hard won. Advocacy was the impetus for many of the positive changes in our society, such as the creation of DD Awareness Month. And that will continue only as long as we fight for it.

In 2012, a pivotal Presidential election year, we are fighting to protect Medicaid. Since many people with disabilities rely on publicly funded services to fully participate in their communities, policy makers need to know you are concerned about continuing those services in the face of budget cuts during tough economic times. Take advantage of March to make your mark on the candidates who hope to hold office in 2013 and beyond. Use Developmental Disabilities Awareness Month as a reason to get involved and get active today!

What Can You Do?

  • Help us educate candidates about the issues concerning people with IDD. Learn more about public policy that impacts people with IDD and then write letters and email and go to campaign events to tell the candidates what you expect them to do to earn your vote.
  • Find a local chapter of The Arc and get involved. Over the coming months we will be working through our national chapter network to help people talk to the candidates, register to vote, get to the polls and collectively make their mark!
  • Consider attending The Disability Policy Seminar in Washington, DC in April. Each year we spend two days covering current public policy in depth to prepare you for a third day on Capitol Hill actually meeting with your Members of Congress and discussing the issues.

Look for more information about our We’ve Got the Power Campaign to engage voters and candidates over the crucial months leading up to Election Day. Together, we do have the power and we can continue to create change!

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Autism NOW Center Launches Local Agencies Directory and Mobile Site

/in /by The Arc

Check out the announcement over on the Autism NOW Center website about new features on its site:

“Led by The Arc and funded by the Administration on Developmental Disabilities, 2011 was a busy year for the Autism NOW Center. With five regional summits, dozens of webinars, and the creation of a top-notch informational website with input from partners in the disability field, we went into 2012 with exciting ideas to expand upon that important work. While www.autismnow.org is becoming a go-to resource for families, individuals with autism, and experts in the field, we’re still working hard on adding new features and content!

We just rolled out two exciting new features on the site recently – a mobile version, allowing users on mobile devices like smart phones and tablets to see an optimized version of the site, and a local agencies directory in the form of a map. This mobile version lets users get to content faster on the go, and creates better accessibility overall for the site. The local agencies directory provides an easy-to-use way to find agencies in your state that can help with services, support and resources for living with autism and other developmental disabilities.”

The Autism NOW Center staff, a national initiative of The Arc, has a busy year planned. Other planned features include commenting on blog articles, a message board, an enhanced community calendar and new video content. Keep an eye on autismnow.org for the latest announcements and resources!

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The Arc’s Peter V. Berns on the White House Blog

/in /by The Arc

One thing I have learned in my 3.5 years as CEO of The Arc is that people with intellectual and developmental disabilities (IDD), their parents, siblings and family members are a passionate lot. So when the White House invited us to bring in 150 of The Arc’s chapter leaders, including people with IDD, I knew we would have an enthusiastic response. Yet little did I expect the extraordinary energy that erupted when President Obama entered the room to speak to the group. Our leaders from throughout the country were quick to their feet with a rousing welcome, rising again when the President concluded his remarks telling the disability community “I’ve got your back.”

– The Arc’s CEO Peter Berns pens a guest post for the The White House blog with thoughts on The Arc’s White House visit during the Community Leaders Briefing (which included a surprise visit from President Barack Obama).

In case you missed President’s Obama’s remarks, you can view them below:

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Half a World Away But So Close

/in /by Guest Blogger

By Amberley Romo, sibling of an individual with IDD and student in China

I’m currently halfway across the world from my sister Caroline studying the Chinese language in Beijing. But I’ve never felt closer to understanding her than I do right now; I can’t believe I had to come all the way to China to understand just a little bit better what every day is like for her.

Incredibly Unique

My sister is incredibly unique; She is almost always infectiously excited and happy, and has a dynamic personality that lights up any room. She is obsessed with dogs, adores babies and her favorite thing in the world is cooking with our mom. She also has a genetic disorder called Angelman Syndrome. Caroline is essentially nonverbal, but like most people with Angelman Syndrome, her intelligence and understanding of what’s going on far surpasses her ability to communicate about it. She is astoundingly emotionally attuned.

Outside of our family and close friends, who understand Caroline’s modified sign language and body language, Caroline has never been able to effectively communicate with strangers without the aid of a communication device. It’s gotten better through the years: We’ve gone from Boardmaker laminated squares with Velcro on the back, to a dinosaur-sized DynaVox augmentative communication device, to the Proloquo2Go app on an IPad.

A New Perspective

I began to see things from Caroline’s perspective when I signed a pledge to speak only Chinese from Monday through Friday for my language immersion program.

I’ll be frank: I’m not exactly fluent. (I started learning eight months ago.) All of a sudden day-to-day interactions such as ordering from a menu and asking directions can induce a panic attack. I’m very aware of how much attention and help I need, especially when there is a line of people behind me waiting for something; I feel guilty. And the pressure of the expectant look on the face of the person who’s waiting for me to ‘get it’ only makes me shut down more.

“I have an Easy Button”

And that’s just the beginning. What’s most frustrating about being limited to only Chinese isn’t that Chinese is difficult (although it certainly is!), it’s suddenly having difficulty expressing the deeper thoughts and complex feelings and needs with the ease to which I am accustomed in English. Every thought-expression is a conscious process, if not always a linguistic battle.

The first time I felt the ‘shut down’ moment I was trying to have a conversation in Chinese with my roommate. I got to the point where I just wanted to put my face in my hands and block her out. At that moment, I had an extreme sense of déjà vu. With Caroline, if something got too hard or too frustrating, she would put her face in her hands to shut us out. The realization felt like being backhanded; before I even realized the connection I had made, I felt like crying.

But ultimately, I do have an “easy-button.” I can simply opt-out of the language pledge. For Caroline, there is no “opting out.” Even though I have a deeper understanding, I can never know what it’s like to not have that escape hatch, and I have so much more appreciation for her efforts.

Amberley Romo, 21, is a recent graduate of American University and worked for The Arc’s Washington, D.C. office as an intern and brand coordinator. She is currently enrolled in a language immersion program in Beijing, China. She is also a member of The Arc as a sibling and a supporter of the movement for people with intellectual and developmental disabilities. The Arc recently launched a National Sibling Council and has partnered with the Sibling Leadership Network to engage people like Amberley as they face the unique challenges and rewards that come from being a sibling of someone with IDD.

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State Chapters Making a Difference: Let’s Hear It for Alabama, Illinois, and Virginia!

/in /by The Arc

Being part of the community and living as independently as possible are among the most important values and goals shared by people with disabilities, their families, and advocates. Chapters of The Arc across the country are on the front lines of pushing for inclusion and advocating for these important rights in their communities. And we want to share the progress that is being made in Alabama, Illinois and Virginia.

Alabama

The Arc of Alabama’s tireless work led to a huge victory for its state at the end of 2011. Working with other statewide IDD organizations, the W.D. Partlow Developmental Center in Tuscaloosa, the home of thousands of individuals with IDD over the years, officially closed on December 28. With the closure of Partlow, Alabama becomes the first state in the southeast and one of only 13 states in the country to no longer operate large public institutions.

“We are delighted about the closure of Partlow. We share the credit for this great accomplishment with People First of Alabama and others, but I can say it would not have happened without The Arc,” said Tom Holmes, Executive Director of The Arc of Alabama.

December’s closing meant the last 150 residents of Partlow were moved to community homes throughout the state. Partlow, which opened in 1923, was costing approximately $42 million a year to operate.

“Most of the families come back and say that they did not realize that their family members would be so much happier living in the community. That is just wonderful for us to hear,” said Tom Holmes.

To learn more about the closure of Partlow read about it in The Tuscaloosa News.

Illinois

Governor Pat Quinn’s announcement of his plan to rebalance the state’s approach to providing long term services and supports for individuals with IDD means change for thousands of individuals in Illinois. The Governor’s Active Community Care Transition (ACCT) plan will increase the number of individuals with IDD living in community settings across the state.

“This historic change in public policy embraces freedom, independence and choice. Our current system is antiquated. Only two states warehouse more people in institutions than Illinois and 13 states have closed all public institutions. More than 30 national studies show that community living provides the most safe and effective care. Yet Illinois ranks last in the nation in the number of available community settings,” said Tony Paulauski, Executive Director of The Arc of Illinois.

The Arc of Illinois has been an integral partner in moving the state toward a community based system. Over the last few months the Governor’s office has been in constant contact with The Arc of Illinois’ Executive Director Tony Paulauski and other members of The Arc.

During the first phase of the plan, residents from the Jacksonville Developmental Center (JDC) in Jacksonville, IL and from the Tinley Park Mental Health Center (MHC) in Tinley Park, IL will be transitioned to community settings and the facilities will be closed. Read more about the first of these closures.

Virginia

Last month, the Department of Justice reached a settlement agreement with Virginia requiring the state to provide community-based services through Medicaid waivers and family supports for more than 5,000 individuals with IDD. The agreement means that Virginia will no longer be heavily reliant on large, expensive, public institutions. The state will be able to focus on individualized and cost effective community based services that allow individuals to live independent lives and participate in the community.

“The Arc of Virginia applauds Governor McDonnell and his administration for taking this important step in the right direction. We salute DOJ’s leadership on making this a successful effort that will result in thousands of people with intellectual and developmental disabilities being afforded the opportunity to live “A Life Like Yours” in the community.  This landmark agreement will be long remembered as a historic moment in the ID/DD civil rights movement,” said Jamie Liban, Executive Director of The Arc of Virginia.

The state must create 4,170 new waiver slots for people currently residing in the state’s five Training Centers (about 1,000 individuals), people with intellectual disabilities who are on the state’s “urgent” waiting list for waiver services, people with ID who are under 22 and live in facilities other than the training centers, people with DD who are on the state’s waiting list for waiver services and for people with DD who are under 22 and live in facilities other than the training centers. The state also will create an individual and family support program for 1,000 individuals with IDD most at risk of institutional placement.

Detailed plans for helping individuals transition from institutional settings to community settings and establishing a quality and risk management system are outlined in the agreement. An independent reviewer will oversee the settlement agreement for the court which retains jurisdiction.

View The Arc’s full statement in response to this agreement.

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

/in /by The Arc

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 (IDD). 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 IDD 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 IDD. 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 IDD 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 IDD 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 IDD 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.

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White House Community Leaders Briefing Videos

/in /by The Arc

A collection of videos, shot by the White House at the White House for the Community Leaders Briefing on February 10, 2012.

President Obama Speaks at Briefing With The Arc

Community Leaders Briefing With The Arc: Part 1

Community Leaders Briefing With The Arc: Part 2

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Tune In to See The Arc at the White House!

/in /by The Arc

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 (IDD), will be briefed by high level White House and Administration officials on topics ranging from Medicaid to education to community living for people with IDD, 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 a.m. 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!

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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.