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The Arc on the Front Lines of Defending Social Security

Many programs vital to people with intellectual and developmental disabilities (IDD) have been at risk over the last few rounds of budget negotiations. Right now, Social Security is in danger of cuts because of talk to change the benefit calculation. This shift to what is called the “chained CPI” would have horrible consequences for people with IDD, forcing them to make life and death choices. The Arc’s CEO Peter Berns was invited to speak at a press conference in the U.S. Capitol today, organized by Senator Bernie Sanders of Vermont. Berns was joined by representatives from other organizations whose constituencies would be impacted by this benefit cut, including AARP, NOW, the AFL-CIO, and Iraq and Afghanistan Veterans of America.

Good morning. I’m Peter Berns, the Chief Executive Officer for The Arc. We are the largest national community-based organization advocating for and serving people with intellectual and developmental disabilities and their families. We have over 175,000 members, and we serve more than 1 million people through our 700 state and local chapters nationwide.

Our nation’s Social Security system is a lifeline for over 56 million Americans including more than 10 million people who qualify because of a disability.

It’s a system that was built up over decades based on our shared commitment to each other. Changing the benefit calculation through the chained CPI isn’t just shaving a few dollars off here and there. We have a moral obligation to make sure that Social Security is there for all Americans in their time of need.

For people with disabilities, the monthly Social Security check can mean the difference between a home in the community, or life on the streets or in an institution.

It can mean the difference between food on the table, or hunger.

It can mean the difference between access to essential medicines and health care, or tempting illness or death.

Many beneficiaries with disabilities rely on Social Security for most or all of their income. With benefits only about $1,100 a month, every cent counts, and over the years the impact of the chained CPI would be real and painful.

Cuts from the chained CPI could also lead to terrible life and death choices for over 8 million very-low income seniors and people with disabilities who rely on Supplemental Security Income. SSI benefits are just over $500 a month.

Think about that – $500 a month is just pocket change for many affluent Americans.

It’s a monthly payment for a high-end car, or a plane ticket for a vacation.

But it’s all that many SSI beneficiaries have to exist on, month after month. The chained CPI would cut SSI benefits not once, but twice: first, before the person ever applies for benefits, by lowering the initial payment level, and second, through lower annual cost-of-living adjustments.

With SSI benefits already extremely low, it’s hard to imagine how beneficiaries would get by after cuts from the chained CPI.

In closing, thank you to Senator Sanders, Senator Whitehouse, and Senator Merkley and to our colleagues for bringing us together today to highlight how the chained CPI would hurt working Americans, seniors, veterans, women, and people with disabilities. We stand united against this harmful benefit cut.

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The Arc Reacts to Baltimore Ravens Quarterback Using “R-Word” in Super Bowl Press Conference

Washington, DC – Baltimore Ravens quarterback Joe Flacco, who will play in the Super Bowl this Sunday, used the “r-word” in a press conference last night. In response to a question unrelated to people with disabilities, Flacco used the offensive term and followed by acknowledging that he shouldn’t use the word. While The Arc appreciates Mr. Flacco’s quick acknowledgment of his mistake, The Arc invites him to get involved in the national dialogue on why this language is offensive and provide leadership on this issue after the Super Bowl.

“All eyes are on the players competing in this weekend’s Super Bowl, and unfortunately, while under this media microscope, Joe Flacco used a hurtful word to people with disabilities. After Super Bowl XLVII is in the history books, The Arc would welcome Mr. Flacco in the national dialogue about why this word is offensive to people with disabilities and what fans can do to help us remove the word from our society,” said Peter Berns, CEO of The Arc.

The Arc is a part of the “Spread the Word to End the Word” campaign along with other organizations to raise awareness of the effects of the “R-word.” The Arc has also been involved in efforts to remove the word from federal health, education and labor statutes, supporting Rosa’s Law in 2010. And just this week, the Social Security Administration announced its intent to remove the word from its work.

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After Rosa’s Law, One Step Closer to Erasing the “R-Word”

This week marks a great victory for disability advocates across the country. The Social Security Administration’s (SSA) announcement of its proposal to stop using the term “mental retardation” and start using “intellectual disability” in its official Listing of Impairments and other regulations is a victory larger than it may seem to many. This decision brings us one step closer to a world free of the R-word.

Just think, this victory comes just over two years after President Obama signed Rosa’s Law, which substituted the stigmatizing word with the terms “intellectual disability” and “individual with an intellectual disability” in federal health, education, and labor policy statutes. Some might think two years is a long time, but the thousands of advocates like me who have spent decades working in the disability policy field know that change like this doesn’t come quickly or easily.

Today’s announcement is all the more remarkable because SSA takes this step voluntarily. Rosa’s Law did not specifically include Social Security or Supplemental Security Income, but SSA is making this change because it’s the right thing to do.

We know how powerful words are. Words also represent you and your viewpoint, and we can all be happy that SSA is taking a step to change the words being used in their official documents to better promote the civil rights of individuals with IDD. The R-word isn’t just a word, it is a stigmatizing term that the disability community has been fighting against for years, and this week we are a step closer to banishing it from our government and our society.

But it’s not over yet – we need your help to keep the momentum going!

SSA will not be able to finalize this change until it goes through the rulemaking process required of all federal agencies. SSA issued its Notice of Proposed Rulemaking to stop using the R-word on Monday, January 28. The public has 30 days to comment – and SSA needs to hear from you.

Please visit the Federal Rulemaking portal at regulations.gov. Use the Search function to find docket number SSA-2012-0066 and then submit comments in support of ending the R-word. Comments are due on February 27, 2013.

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The Arc Applauds Social Security Administration Ending Use of the “R-Word”

Washington, DC – In an historic change for people with intellectual disabilities (ID), the Social Security Administration (SSA) announced its intent to stop using the phrase “mental retardation” and start using “intellectual disability” in its official Listing of Impairments.

This change, which The Arc and many other organizations advocated for, comes a little over two years after President Barack Obama signed Rosa’s Law. In 2010, The Arc was very involved in efforts to end the use of the “r-word” and worked to enact Rosa’s Law, which substituted the stigmatizing word with the terms “intellectual disability” and “individual with an intellectual disability” in federal health, education, and labor policy statutes. While the legislation did not cover programs such as Medicare, Medicaid, and Social Security, it was an important stepping stone for shaping future legislation and efforts that will transform these outdated terms in all federal laws. The Social Security Administration’s actions are a welcome result of the success of Rosa’s Law.

“Changing how we talk about people with disabilities is a critical step in promoting and protecting their basic civil and human rights. This is an important moment for people with disabilities because Social Security is a lifeline to so many – it allows people with ID to live in their communities and be as independent as possible. And now, the language the agency uses will reflect the respect people with ID deserve,” said Peter Berns, CEO of The Arc.

The proposed regulation published today has a 30-day comment period, and we encourage people to submit comments in support of the proposed regulation online by February 27, 2013.

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News From the Social Security Administration

Social Security Commissioner Michael J. Astrue shared with The Arc the following note regarding a welcome change in terminology in the Administration’s Listing of Impairments.

I am pleased to inform you that today we put on public display at the Office of the Federal Register a Notice of Proposed Rule Making (NPRM) to replace the term “mental retardation” with “intellectual disability” in our Listing of Impairments and in other appropriate sections of our rules.

Many of you have rightfully asserted that the term “mental retardation” has negative connotations, has become offensive to many people, and often results in misunderstandings about the nature of the disorder and those who have it. Partly in response to these concerns, Congress passed Rosa’s Law, which changed references to “mental retardation” in specified Federal laws to “intellectual disability,” and references to “a mentally retarded individual” to “an individual with an intellectual disability.” While Rosa’s Law did not require us to make any changes to our existing regulations, we are doing so in the spirit of the law and to join other agencies and organizations who are adopting the term “intellectual disability.”

Beginning Monday, you can view the NPRM online at www.regulations.gov.

Thank you for your continued support and cooperation with the Social Security Administration as we work to serve the needs of the American public.

Michael J. Astrue
Commissioner

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January 25 Is EITC Awareness Day

Friday, January 25, 2013 is the Seventh Annual Earned Income Tax Credit (EITC) Awareness Day. Do you know if you are eligible for this important tax credit? The IRS is reaching out to underserved taxpayers such as people with intellectual and developmental disabilities to make sure they are aware of the credit and how to claim it.

The EITC can increase federal income tax refunds from $1 to more than $5,891, depending on individual circumstances which can include workers with disabilities and workers in non-traditional situations such as grandparents raising grandchildren.

You can find out more about the Earned Income Tax Credit at EITC Central, a special website set up by the IRS.

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Join Us at the 2013 Disability Policy Seminar

Does what happens in Washington, D.C. really matter? Can you make a difference? You bet! Every day millions of Americans with intellectual and developmental disabilities are impacted by the public policy decisions – big and small — made by their representatives in Congress.

And each year, hundreds of advocates attend the Disability Policy Seminar in Washington, D.C. to learn more about and discuss the hottest topics in disability public policy. We invite you to join us April 15-17 for an opportunity to advance the grassroots movement for people with IDD and make sure your elected officials know what’s important to you.

Monday and Tuesday, April 15 and 16, are filled with informative in-depth sessions from disability policy experts and opportunities to network with others from your state. And, we’ll have a “newcomers” track with sessions designed for people who are new to federal public policy advocacy to answer questions and give you the background you need. Then the event culminates on Wednesday, April 17 with a breakfast on Capitol Hill before you personally meet with your elected representatives and make a case for their cause supported by information about the issues provided during the Seminar.

Register now and book your room at the Grand Hyatt in downtown Washington D.C. 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 12.

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 (NACDD), and Self-Advocates Becoming Empowered (SABE)

Sponsored by: Autism Society and NADD, an association for persons with developmental disabilities and mental health needs

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Present at the 2013 National Convention

We are currently seeking proposals for innovative, motivating, and interactive presentations for our 2013 National Convention in Bellevue, Washington. Next year’s theme “Achieving Momentum” reflects The Arc’s continuing progress and forward movement. Each year, we are growing not only as an organization but as a grassroots movement working in communities across the country to promote our mission. Utilizing new technologies and innovative programs, we are extending our reach and more importantly making more of an impact.

The Arc encourages proposals that reflect our core values, involve people with intellectual and developmental disabilities (IDD), family members, advocates and/or professionals, and/or provide opportunities for participants to walk away with a vision and concrete plan for action.

As we continue to achieve momentum in all we do as an organization, we have specific topics we want to discuss during next year’s convention:

  • Technology: Presentations/Sessions that introduce and/or educate individuals about how technology can improve the lives of individuals with IDD by assisting them in school, work, recreational activities, and facilitate better inclusion in their communities either through assistive technology, online educational tools or better communications and operations systems for more effective delivery of services.
  • Family Support: Presentations/Sessions that demonstrate creative supports for family members as they work to help promote their loved ones’ full inclusion in the community. This can include community activities or groups, programs, community tools or online resources that can be utilized by family members to assist them with advocating for their family members, communicating with their family members and each other, planning for the future and accessing services and supports.
  • Chapter Innovations: Presentations/Sessions that demonstrate innovative programming or initiatives of chapters of The Arc or collaborations with community partners which are propelling the intellectual and developmental disability community forward, either by providing innovative avenues for inclusion, increased competitive employment, better and/or more efficient services and supports, or the development of innovative leadership, collaboration, fundraising/friend-raising, or operational activities that can serve as best practice examples for other nonprofit organizations.
  • Growing the Grassroots: Presentations/Sessions that demonstrate progressive and impactful advocacy for people with intellectual and developmental disabilities at the local, state, regional or national level through the development and mobilization of a strong grassroots advocacy community.

Please keep in mind that concurrent sessions will be held between August 2-4, 2013. As a presenter, you must be available on these dates. We encourage self-advocate participation in all sessions as participants and presenters. Submit your application using this form.

The deadline for submission of presentation ideas is February 1, 2013. Selection of presentations will take place on or about March 29, 2013. Please contact Laurie Edson, Director of Chapter Excellence, at edson@thearc.org if you have any questions.

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What Do You Think About Autism NOW?

Have you ever visited www.autismnow.org? We’d like to know what you think. Did you find what you were looking for? Do you have any suggestions for how we might improve? Take our short survey [update: this survey is now closed] to help us ensure that this website is serving you well.

If you’re not familiar with autismnow.org, we highly recommend you take a look. Autism NOW: The National Autism Resource and Information Center is a project of The Arc funded, in part, by a grant from the Administration on Intellectual and Developmental Disabilities. It is designed to be a dynamic, interactive and central point of quality resources and information for people with Autism Spectrum Disorders (ASD) and other developmental disabilities as well as their families and others. In addition to autismnow.org, this project has created events, online education opportunities and a vibrant online social community dedicated to collecting and sharing quality information, vetted by experts and easily accessible. If you are an individual who identifies as being on the Autism spectrum or are just interested in getting more information about ASD, we invite you to explore and share the site and then take the survey if you have some feedback you’d like to give.

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The Arc of the Mid Ohio Valley Responds to Local Incident Involving Restraint and Seclusion

By The Arc of the Mid Ohio Valley

It is our position at The Arc of the Mid Ohio Valley that every child deserves to be treated with dignity and respect, be free from abuse and bullying, and that policies restricting the use of restraint and seclusion should apply to all children, not just children with disabilities.

Furthermore, The Arc of the Mid Ohio Valley believes that all individuals involved in the education of students with disabilities must:

  • Ensure that students with disabilities are not subjected to unwarranted restraint or isolation and must ensure that any behavioral intervention is consistent with the child’s civil rights.
  • Ensure that teachers and related services personnel, as well as their representatives are prepared to teach and/or support students effectively in the general education curriculum and in inclusive settings to the maximum extent appropriate, alongside students who do not have disabilities.
  • Develop Individualized Education Plans (IEPs) that build on student strengths, meet the student’s needs, and offer supports and services necessary to achieve success, that ensure students are served in the least restrictive environment (LRE), as determined for each student.

As outlined in West Virginia Code, the legislature charges school administrators, faculty, staff and volunteers with “demonstrating appropriate behavior, treating others with civility and respect, and refusing to tolerate harassment, intimidation or bullying”, which is any intentional gesture, or any intentional electronic, written, verbal or physical act, communication, transmission or threat that creates an emotionally abusive educational environment for a student.

With respect to this recent incident involving a 15-year old Wood County student who has a diagnosis of Asperger syndrome, it is important to point out that individuals with autism spectrum disorders are three times as likely as their typically-developing siblings to experience bullying, according to a recent national survey.

According to the survey of parents by the Interactive Autism Network (IAN) and Johns Hopkins University researchers, 61 percent of kids with Asperger syndrome have experienced bullying. In comparison, 28 percent of children with autism and 37 percent of children with other autism spectrum disorders have been bullied, parents reported.

Asperger syndrome is a form of autism, which is a lifelong disability that affects how a person makes sense of the world, processes information and relates to other people. Autism is often described as a ‘spectrum disorder’ because those with the diagnosis are affected in many different ways and to varying degrees.

The Arc of the Mid Ohio Valley is a non-profit organization dedicated to ensuring satisfying and productive lives for children and adults with intellectual and developmental disabilities. Through programs and services, they empower, encourage, and assist those individuals to live, learn, worship, work and play, in their community.