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

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

Washington, DC – As the nation’s largest organization working on behalf of people with intellectual and developmental disabilities (IDD), 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 IDD.

The Arc advocates for and serves people with IDD, 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 IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

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The Arc Reacts to Alleged Crimes against Four Individuals With Disabilities in Philadelphia

WASHINGTON, DC – Peter V. Berns, the CEO of The Arc of the United States, released the following statement regarding the alleged crimes committed against four individuals with disabilities in Philadelphia discovered over the weekend.

“The horrifying news out of Philadelphia about the four people with disabilities locked up in deplorable conditions is inexcusable and the justice system must get to the bottom of this case. People with disabilities are often the target of violent crime, in fact the 2008 National Crime Victim Survey found that violent crimes committed against people with disabilities is twice as high compared to those without disabilities. That’s why The Arc works with law enforcement and victim advocates to enhance their skills in reaching out to and supporting people with intellectual and developmental disabilities who are victims, to give them the tools they need to move from victim to survivor.”

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The Arc of the U.S. Launches New Medicaid Reference Desk

Washington, DC – Today, The Arc of The United States is announcing the launch of the new Medicaid Reference Desk. This resource is intended to help individuals with intellectual and developmental disabilities (IDD) and their families as they navigate the complexities of Medicaid benefits, services and supports.

The Medicaid Reference Desk is an accessible, detailed, state-by-state information source about Medicaid benefits, which includes a glossary of terms, answers to frequently asked questions, person-centered planning resources and a blog from The Arc’s training specialist about issues related to Medicaid, self-advocacy and person-centered planning.

“This website helps individuals with intellectual and developmental disabilities and others access and gain knowledge about Medicaid, which is an essential lifeline for millions of individuals with intellectual and developmental disabilities and their families. As the largest organization defending the civil rights of people with intellectual and developmental disabilities, we are excited about the opportunities the Medicaid Reference Desk can provide to families across the country,” said Peter V. Berns, CEO of The Arc.

For people with disabilities and for those who provide their care, Medicaid serves as a valuable safety net. Often the only source of financial assistance for health care, Medicaid plays a critical role for people with disabilities in providing coverage and access to care. At least half of the funds for Medicaid programs come from the federal government with the remainder coming from state funds. Federal law contains detailed requirements and limitations on eligibility, services, and financing, but state laws vary.

This project was made possible by a grant from the U.S. Department of Health and Human Services, Administration on Developmental Disabilities (Grant No. 90 DN0215). You can explore the Medicaid Reference Desk on The Arc’s Website: www.thedesk.info.

The Arc advocates for and serves people with IDD, 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 IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

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Temple Grandin, Lauren Potter, and Hope Salazar Share the Stage at The Arc’s National Convention

Denver, CO – Dr. Temple Grandin, whose life and work inspired the award-winning HBO biopic starring Claire Danes, will be the keynote speaker at this year’s national convention of The Arc, the country’s leading and largest organization for people with intellectual and developmental disabilities (IDD). Dr. Grandin will be presented with The Arc’s Image and Inclusion Award by last year’s recipient Lauren Potter, from the hit television program Glee.

Dr. Grandin, who has autism, is one of the top scientists developing groundbreaking methods for more humane handling of livestock. She is renowned for her design of animal handling facilities – currently, half the cattle in the U.S. and Canada are handled in equipment she designed. Dr. Grandin has also developed animal welfare guidelines for the meat industry and consults with McDonalds, Wendy’s International, Burger King, and other companies on animal welfare. She is a professor and researcher at Colorado State University, and was honored in Time Magazine’s “The 100 Most Influential People in the World.”

At age two, Dr. Grandin was non-verbal, and exhibited all the signs of severe autism. Through intensive teaching and speech therapy, she learned to speak. As a child growing up on an Arizona ranch with her aunt, and with the guidance of a high school science teacher, Dr. Grandin was motivated to pursue a career as a scientist and livestock equipment designer.

“Dr. Grandin’s appearance at The Arc’s national convention is sure to inspire the hundreds of members, staff, volunteers, families and individuals with IDD that will gather in Denver in September. This convention comes at a critical time in our efforts to reinvigorate our movement and grow The Arc,” said Peter Berns, CEO of The Arc.

In addition to Dr. Grandin, other well respected advocates in the disability community will be on hand, including actress Lauren Potter from Glee, Hope Salazar (wife of U.S. Secretary of the Interior, Ken Salazar), and Dr. David Braddock, the force behind the “State of the States” report on disability issues. Dr. Braddock is a former recipient of The Arc’s Distinguished Research in Intellectual and Developmental Disabilities Award and will be a featured speaker at the convention in addition to participating in a panel discussion with attendees. The 2011 Convention will take place in Denver, Colorado, September 16 – 18, at the Sheraton Denver Downtown.

The Arc advocates for and serves people with IDD, 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 IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

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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 (IDD) to share their stories of achievement. All entries were submitted through The Arc’s Facebook 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 18.

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 IDD, 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 IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

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

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.

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The Arc’s Statement on Budget Deal and Impact on People With Intellectual and Developmental Disabilities

WASHINGTON, DC – The Arc, the nation’s largest and oldest human rights organization for people with intellectual and/or developmental disabilities, released the following statement from its CEO Peter V. Berns on the passage of the budget and debt ceiling deal in Washington.

“While we are glad that the immediate crisis has passed and Medicaid survived the first round of budget cuts in Washington, this fight is far from over. Now more than ever, people with intellectual and developmental disabilities, their families, friends and colleagues need to stand up and make their voices heard.

We must continue to press Congress to protect people with disabilities. The Medicaid lifeline, along with other programs that help ensure inclusion of people with intellectual and developmental disabilities in society, are still at stake,” said Berns.

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Temple Grandin Brings Her Celebrity Status and Autism Advocacy to The Arc’s National Convention

WASHINGTON, DC – Dr. Temple Grandin, whose life and work inspired the award-winning HBO biopic starring Claire Danes, will be the keynote speaker at this year’s national convention of The Arc, the country’s leading and largest organization for people with intellectual and developmental disabilities (IDD).

Dr. Grandin, who has autism, is one of the top scientists developing groundbreaking methods for more humane handling of livestock.  She is renowned for her design of animal handling facilities – currently, half the cattle in the U.S. and Canada are handled in equipment she designed. Dr. Grandin has also developed animal welfare guidelines for the meat industry and consults with McDonalds, Wendy’s International, Burger King, and other companies on animal welfare. She is a professor and researcher at Colorado State University, and was honored in Time Magazine’s “The 100 Most Influential People in the World.”

At age two, Dr. Grandin was non-verbal, and exhibited all the signs of severe autism. Through intensive teaching and speech therapy, she learned to speak. As a child growing up on an Arizona ranch with her aunt, and with the guidance of a high school science teacher, Dr. Grandin was motivated to pursue a career as a scientist and livestock equipment designer.

“Dr. Grandin’s appearance at The Arc’s national convention is sure to inspire the hundreds of members, staff, volunteers, families and individuals with IDD that will gather in Denver in September. This convention comes at a critical time in our efforts to reinvigorate our movement and grow The Arc,” said Peter Berns, CEO of The Arc.

In addition to Dr. Grandin, other celebrities in the disability community will be on hand, including actress Lauren Potter from Glee and Dr. David Braddock, the force behind the “State of the States” report on disability issues. The 2011 Convention will take place in Denver, Colorado, September 16 – 18, at the Sheraton Denver Downtown.

The Arc advocates for and serves people with IDD, 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 IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

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

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 (IDD) 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 IDD, 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 IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.