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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 (I/DD), 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 (I/DD) 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 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’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.

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

/in /by The Arc

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.

“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.

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

/in /by The Arc

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.”

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The Arc Supports Members of Congress in Unveiling Legislation to Give Families Greater Financial Flexibility for Loved Ones With a Disability

/in /by The Arc

Washington, DC – Today, The Arc of the United States joined Congressman Ander Crenshaw (R-FL), Senator Robert Casey (D-PA), Congresswoman Cathy McMorris Rodgers (R-WA), and disability organizations to unveil the “Achieving a Better Life Experience Act of 2011” (ABLE Act) at the U.S. Capitol.

The ABLE Act aims to change the tax code to allow for tax advantaged savings accounts for individuals with disabilities for certain expenses, like education, housing, and transportation. By creating ABLE accounts, this bill would let families plan and save secure funding for disability-related expenses on behalf of designated beneficiaries with disabilities that will supplement, but not replace, benefits provided through private insurances, the Medicaid program, the Supplemental Security Income program, the beneficiary’s employment, and other sources. Instead of penalizing people with disabilities whose families are able to set aside some funds to allow them to be more independent in life down the road, the ABLE Act provides new opportunities and breaks down barriers for people with intellectual and developmental disabilities (IDD).

“The ABLE Act is about giving people with intellectual and developmental disabilities the opportunity to achieve their dreams. Families are looking for ways to finance things like an apartment, or a ride to work, or additional educational opportunities after high school that don’t jeopardize other necessary services provided by federal programs. This bill creates a tool for families that could lead to a more independent and fulfilling life,” said Peter V. Berns, CEO of The Arc.

Berns spoke at a press conference on Capitol Hill and highlighted some of the important benefits for individuals with IDD and their families. Members of the National Down Syndrome Society, Autism Speaks, and other organizations were also on hand to support the cause.

Berns referenced a young man named Geoffrey Mikol, who is a senior at Walt Whitman High School in Bethesda, Maryland. After Geoffrey graduates, he would like to work in the community, perhaps in the paleontology field. But in order to fulfill that dream, his mom will need to find ways to make it happen, saving additional dollars for training and transportation, and making sure she can financially plan and save for unforeseeable needs in Geoffrey’s future.

“Right now, there could be too many obstacles in Geoffrey’s way, forcing him to be unemployed and isolated. The ABLE Act will remove barriers for people like Geoffrey, who shouldn’t have to abandon his dream of working in his community simply because of the logistics necessary to make it happen. We allow this type of savings for the future of our children without disabilities – this just gives the same opportunity to people with disabilities,” said Berns.

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Senators Harkin and Grassley and Congressman Loebsack Meet With The Arc’s “Achieve With Us” Contest Winner

/in /by The Arc

Washington, DC – This week, The Arc of the United States welcomed Tyler Smothers from Cedar Rapids, Iowa to Washington, DC to meet with Senator Tom Harkin, Senator Chuck Grassley, and Congressman Dave Loebsack (IA-2) to share his story of achievement.

In August, The Arc announced that Tyler was the winner of the first ever “Achieve with us” social media contest. The contest invited individuals with intellectual and developmental disabilities (I/DD) to share their stories of achievement. Out of 119 contestants garnering more than 25,000 votes, Tyler was selected for his impressive achievements in his community, which had been devastated by floods in 2008.

Tyler was and remains very involved with his local chapter, The Arc of East Central Iowa. As downtown Cedar Rapids succumbed to flood waters, and the chapter’s office sustained major damage, Tyler saw the need to help his community get back on its feet. So he became the driving force behind The Arc of East Central Iowa’s annual bike riding fundraiser “Tour de Flood.” Putting aside his wheelchair and using an adaptive bike, Tyler leads the ride, and every year since, has raised an impressive amount of funds for his chapter.

As the winner of the contest, Tyler and his mother received a two day trip to Washington, DC. Tyler was in Washington, DC from November 1-3, meeting with The Arc’s National staff in addition to members of his Congressional delegation. Tyler was also joined by his father, J.J. Smothers, and his brother, Josh Smothers, who submitted Tyler’s entry on Facebook.

During his meetings, Tyler shared the challenges of living with a disability. He also told Congressman Loebsack how the services he and his friends receive allow them to remain active in the community and how that is important to him. Tyler’s mother Cindy spoke about how Medicaid is a lifeline for her family. Without Medicaid, Cindy would not be able to work and Tyler would not be able to be the active member of his community that he is.

Tyler’s meetings on Capitol Hill come at a critical juncture in budget negotiations, where programs that people with I/DD rely on could be on the table for cuts. The Arc is in the midst of an advocacy campaign, called “Don’t Cut Our Lifeline,” to protect Medicaid.

“Anyone that meets Tyler will learn that he is a young man who values his independence and loves his community. Medicaid cuts in Washington would cause great harm to Tyler, his family, and millions like him across the country because they would be left without the services and supports that allow them to live the kind of life we all want for people with disabilities,” said Peter V. Berns, CEO of The Arc.

Tyler made an impression on each elected official.

“Tyler is an incredible young man – an Iowan who demonstrates why we must focus on an individual’s abilities, not their disabilities. After meeting with Tyler and his family, it is no surprise why he won The Arc’s ‘Achieve with Us’ award. His spirit and dedication to community are an inspiration to all of us,” said – Senator Tom Harkin (D-IA)

“I appreciated getting to meet with Tyler,” Senator Chuck Grassley (R-IA) said. “Tyler is literally leading the way for his neighbors as Cedar Rapids continues to recover from flooding. He’s an inspiration and deserving of this recognition. I encouraged him to keep up the good work, but it was clear to me he was already planning on that.”

“It was an honor to meet Tyler and his family while they were in Washington. His work to raise money for The Arc of East Central Iowa should serve as inspiration for us all,” said said Congressman Dave Loebsack (IA-2). “I applaud The Arc for their work to provide assistance to people with disabilities and I will continue to work to ensure that families like the Smothers have access to the programs and services they need. It is vitally important that people with disabilities have every possible chance to participate in their communities and that their families have the support they need to care for their loved ones.”

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The Arc Welcomes Iowa’s Tyler Smothers, “Achieve With Us” Contest Winner, to Washington, DC to Advocate on Capitol Hill

/in /by The Arc

Washington, DC – This week, The Arc of the United States will welcome Tyler Smothers, from Cedar Rapids, Iowa to Washington, DC to meet with members of the Iowa Congressional delegation.

In August, The Arc announced that Tyler was the winner of the first ever “Achieve with us” social media contest. The contest invited individuals with intellectual and developmental disabilities (I/DD) to share their stories of achievement. Out of 119 contestants garnering more than 25,000 votes, Tyler was selected for his impressive achievements in his community, which had been devastated by floods in 2008.

Tyler was very involved with his local chapter, The Arc of East Central Iowa, where he participated in day programs, social events, and interacted in his community. As downtown Cedar Rapids succumbed to flood waters, and the chapter’s office sustained major damage, Tyler saw the need to help his community get back on its feet. So he became the driving force behind The Arc of East Central Iowa’s annual bike riding fundraiser “Tour de Flood.” Putting aside his wheelchair and using an adaptive bike, Tyler leads the ride, and every year since, has raised an impressive amount of funds for his chapter. In fact, in the first year of the ride, Tyler set a goal of raising $2,000 – he far exceeded that amount, bringing in $18,000. The fourth annual “Tour de Flood” took place on September 18.

As the winner of the contest, Tyler and his mother received a two day trip to Washington, DC. Tyler will be in Washington, DC from November 1-3, meeting with The Arc’s National staff in addition to members of his Congressional delegation. He is scheduled to meet with Senator Tom Harkin, Senator Chuck Grassley, and Congressman Dave Loebsack (IA-2) to share his story of achievement. When asked what he will discuss when he comes to Washington, Tyler said, “I am going to tell them living with a disability is challenging.”

Tyler’s meetings on Capitol Hill come at a critical juncture in budget negotiations, where programs that people with I/DD rely on could be on the table for cuts. The Arc is in the midst of an advocacy campaign, called “Don’t Cut Our Lifeline,” to protect Medicaid.

“Tyler exemplifies what The Arc stands for and we are honored to host him and his family during their trip to Washington, DC. Tyler is an inspiration to his friends and neighbors in Iowa, and this week, he will take his message to leaders in Washington to demonstrate why in particular the Medicaid lifeline is so important,” said Peter V. Berns, CEO of The Arc.

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The Arc’s Statement in Response to Congressional Hearing on Supplemental Security Income for Low Income Children

/in /by The Arc

Washington, DC – Peter V. Berns, the CEO of The Arc of the United States, released the following statement about Supplemental Security Income (SSI) following today’s Ways and Means Committee hearing.

“The Arc hopes that Congress will continue to support and sustain SSI for children with significant disabilities. The children who depend on SSI have significant disabilities, live in low-income households, and rely on SSI for access to medications and to meet other essential needs – it is their lifeline. SSI enables families to access services that allow them to care for their child with a disability at home, as opposed to being placed in institutions.

We are so pleased to have a family from The Arc of Kentucky at the hearing today. Katie Bentley and her son Will are wonderful examples of what SSI does for families. Forced to quit her job to care for her son, Katie and her family are reliant on SSI benefits and the related medical supports available to him. As Katie said at today’s hearing, SSI allows Will to lead an active life in the community, while living at home. SSI means opportunities to families like the Bentleys, and we cannot afford to take these opportunities away from children with severe disabilities.

Any attempts to cut SSI for low-income children are unacceptable. We cannot allow children who are clearly in need to suffer.”

SSI is essential for low-income children with severe disabilities. This program was established to support and preserve the capacity of families to care for their children with disabilities in their own homes by easing the financial burden families of children with disabilities face. Last year alone, SSI provided benefits for more than 1 million children with severe disabilities. All children who receive SSI benefits live in low-income households. SSI benefits help struggling families afford medications and other essential services, and meet basic needs.

The Arc of the United States has joined with more than 80 national organizations to support the preservation of SSI for low-income children with disabilities.

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Reaction From The Arc on House Energy and Commerce Committee Hearing on CLASS Act

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Washington, DC – As the nation’s largest organization working on behalf of people with intellectual and developmental disabilities (I/DD), The Arc released the following statement on today’s Congressional hearing on the CLASS Act.

“The reality is the long term services and supports needs of people with disabilities simply can’t be put on hold while Congress engages in partisan attacks. CLASS is make or break for millions of American families – Congress and HHS must find a path forward to keep this promise and take pressure off of Medicaid, or they will leave the American people with terrible choices to make that will affect their health and dignity,” said Marty Ford, Public Policy Director for The Arc.

The Arc is concerned about the tone of portions of today’s hearing and believes the issue of long term services and supports should not become a partisan football. The Arc is heartened by the commitments of some of the Committee members to find a solution to this long term care problem for millions of Americans, including people with I/DD.

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.