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The Countdown Is On to All-Electronic Social Security Payments

The Treasurer of the United States, Rosie Rios, started an official “countdown clock” marking less than one year until the March 1, 2013 deadline when all federal benefit recipients must receive their Social Security and other federal benefit payments electronically.

The move will help taxpayers save $1 billion over 10 years and will greatly decrease the risk of identity and check theft faced by recipients of mailed benefits. Currently, about 90 percent of Social Security and Supplemental Security Income (SSI) payments are being made electronically. The remaining 10 percent have less than a year left to switch over before electronic benefits become mandatory.

This will impact many of the millions of individuals with intellectual and developmental disabilities (IDD) who are eligible for and rely on these benefits, their families and those who act as trustees for federal benefit payments. . However, the Treasury Department has attempted to make it easy to set up electronic payments through its “Go Direct” campaign. Free financial education materials are available along with a “Go Direct Money Matters” page at which offers not only information about how to receive electronic payments, but tips for retirement planning, preventing theft and more. Check it out and mark your calendar for March 1, 2013 if you or someone you care about receives federal benefit checks by mail.

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The Arc Reacts to New Federal Data Showing Autism on the Rise

Washington, DC – The prevalence of Autism Spectrum Disorders (ASDs) is rising, according to new data released today by the Centers for Disease Control and Prevention (CDC). The CDC is reporting that one in 88 children has autism or a related disorder.

“The data signal an impending crisis in America’s safety net system for people with autism and related disorders. We may be facing a ‘perfect storm’ as the rapid rise in the prevalence of autism comes at the very same time Congress is proposing to cut hundreds of billions of dollars from the Medicaid program – the single largest funding source of services and support for autism – while slashing funding for public health programs,” said Peter V. Berns, CEO of The Arc.

ASDs are a group of developmental disabilities that are often diagnosed in early childhood and can cause significant social, communication, and behavioral challenges over a lifetime. There are three subtypes of ASDs: autistic disorder, Asperger disorder, and pervasive developmental disorder not otherwise specified (PDD-NOS). Chapters of The Arc serve people with autism and their families across the country, supporting their efforts to live and succeed in the community.

According to the CDC, medical costs for children with ASDs are estimated to be six times higher than for children without ASDs. In addition to medical costs, intensive behavioral interventions for children with ASDs can cost $40,000 to $60,000 per child per year.

Early identification and intervention can have a significant impact on a child’s ability to learn new skills. CDC’s “Learn the Signs. Act Early.” health education campaign promotes awareness among parents, health professionals, and child care providers about healthy developmental milestones, the importance of tracking each child’s development, and acting early if there are concerns. CDC offers free online resources, including checklists of developmental milestones, at

“Research and surveillance must continue to be priorities by entities such as the CDC, with dollars and expertise dedicated to trying to figure out not only the causes of, but also life solutions for autism. We fully support the CDC’s position that early identification and intervention efforts are critical to ensuring the best opportunities for people with autism to achieve independence,” said Berns.

Autism NOW: The National Autism Resource and Information Center, a federally funded project of The Arc, is another resource for people with ASDs and their families. The online center aims to help people searching the web separate fact from fiction when it comes to autism. Learn more at

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Developmental Disabilities Awareness Month Q&A With T.J. Sutcliffe

This month, The Arc’s blog will feature a Q & A with members of The Arc’s national office staff to help raise awareness of issues important to the IDD community during Developmental Disabilities Awareness Month. T.J. Sutcliffe is a policy advocate for The Arc working to promote and protect the rights of individuals with IDD through positive public policy.

Q. T.J., you work on the front lines in Washington, DC helping to shape public policy to meet the needs of people with IDD. Why is it important to take advantage of Developmental Disabilities Awareness Month in March to get involved in public policy?

“When a Member of Congress hears directly from a constituent with a disability … it can make the issue real in a way that statistics just can’t.”

A. Developmental Disabilities Awareness Month is the perfect time for people with IDD, their families, and friends to get involved in public policy. Right now, the U.S. Congress is starting to look at Federal funding for next year, and we know that funding is going to be very tight. It’s a great time to speak up early in the process, and let Congress know that programs like Medicaid are a lifeline for people with IDD and their families, and must be sustained. Also, a huge part of awareness is telling our stories – and the stories of people with IDD and their families are incredibly powerful. When a Member of Congress hears directly from a constituent with a disability, a parent, a sibling, a friend, or a neighbor it can make the issue real in a way that statistics just can’t. So don’t wait. Check out The Arc’s “Don’t Cut Our Lifeline” Medicaid toolkit and visit The Arc’s Action Center to find out how you can get involved.

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Celebrating the Anniversary of the Affordable Care Act

On the two year anniversary of the signing of the Affordable Care Act (ACA), I am reminded of the over two decades of health care advocacy by The Arc, and of one family in particular that came to the White House with me last summer to make the case to senior officials to protect the Medicaid lifeline.

This family has been through so much in our health care system with their 2 year old son, who has DiGeorge Syndrome. He was born without a pulmonary artery, has had a couple of strokes and heart surgeries, and has been on a ventilator since birth. He spent his first six and half months in the hospital, and hit the million dollar cap on his mother’s insurance by end of April 2010.

This little boy’s medical costs were so high that, even with two incomes, they were going to lose their home and everything else they worked hard for until receiving Medicaid. While the ACA won’t remove every insurance road block in his life, if the law had been in place when he was born, it could have made things a little easier for the family.

With families like this one in mind, The Arc has been a leader of the health reform charge in the disability community, calling for: the elimination of pre-existing conditions, ending discrimination in health care, expanding Medicaid eligibility, and universal health care coverage. While progress toward these goals has been achieved over the years, comprehensive health insurance reform was an elusive goal until the passage of the ACA. Today we can celebrate:

  • Kids can access health insurance now that was previously denied because of a pre-existing condition;
  • Young adults can stay on their parents private health insurance plan until they turn 26;
  • Access to free preventive care – like mammograms, colonoscopies, and other testing;
  • Health insurance companies can no longer arbitrarily place a life time limit on health insurance coverage; and
  • Insurance companies must justify large premium increases.

We have even more to look forward to in 2014, when the private health insurance markets known as the exchanges will be up and running in every state. These insurance market places will be open to small businesses and individuals in need of affordable health insurance, allowing the previously uninsured to find coverage they can fit in their budgets. There will be help for people who are low income to afford the insurance. Children’s dental and vision services, rehabilitative and habilitative services and devices for all ages, mental health and behavioral health services will be part of the health plans sold in the exchanges.

Medicaid coverage will be expanded to adults earning up to 133% of poverty, an expansion likely to benefit many adults with disabilities who may not qualify for Social Security benefits or earn too much to qualify for Medicaid currently. Pre-existing conditions limits for adults will be eliminated and nondiscrimination provisions will take effect. Insurance will be less expensive for people with health conditions because insurance companies will have limits on what they can charge.

Health care coverage matters and people with disabilities have much to gain from implementing these reforms. Your advocacy helped make it happen, and today we can take a moment celebrate your accomplishment!

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The Arc Opposes House Republicans’ Budget Blueprint

Washington, DC – The Fiscal Year 2013 budget proposal released today by House Budget Committee Chairman Paul Ryan (R-WI) includes a number of provisions that would be devastating to people with intellectual and developmental disabilities (IDD), their families, and services providers. By far, the most damaging part of the plan would be block granting the Medicaid program. Federal spending on Medicaid would be slashed by $810 billion over ten years, leaving cash-strapped states to fill in the funding gaps with lowered standards and very little oversight.

“It is deeply troubling that, in the name of deficit reduction, there is absolutely no shared sacrifice. The House Budget proposes to decimate the Medicaid program, taking away essential health and long term services and supports for our middle and low income citizens, while providing for tax breaks for the wealthiest Americans and corporations. It should be called the ‘fend for yourself’ budget,” said Peter V. Berns, CEO of The Arc.

This budget plan would also radically transform Medicare by converting it to a voucher program, resulting in most people with disabilities having to pick up a greater share of the tab as they get older. And it would repeal the Affordable Care Act, eliminating expansions of health care that benefit people with disabilities and critical insurance reforms that protect against insurance discrimination.

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The Arc Stands Up For Safety of Kids With Disabilities in the Classroom

Questions Report that Promotes Restraint and Seclusion

Washington, DC – In a letter to U.S. Senator Tom Harkin (D-IA), Chairman of the Health, Education, Labor and Pensions Committee, The Arc expressed serious concerns about a recent report from the American Association of School Administrators (AASA) that promotes the use of restraint and seclusion as tools to protect students and school personnel. The Arc supports the Keeping All Students Safe Act, introduced by Senator Harkin and Representative George Miller (D-CA), to allow the use of physical restraint only when someone is in danger of being harmed, while ensuring that personnel receive proper training, that parents are aware of any restraint or seclusion used with their children and that the most dangerous types of restraint and seclusion are eliminated.

The AASA report is in stark contrast to reports from the Government Accountability Office and the National Disability Rights Network that document that children are injured, traumatized and even killed as a result of restraint and seclusion in schools and that the use of these dangerous techniques is widespread. The AASA report relies on a survey of an unknown number of AASA’s members, and portrays restraint and seclusion as a tool to be relied on by educators. The Arc believes that the harm suffered by students through the use of dangerous restraint and seclusion practices in our nation’s schools is unacceptable. Numerous alternatives to restraint and seclusion exist, including positive behavioral interventions and supports and other methods for preventing and stopping problem behaviors.

The Office for Civil Rights in the U.S. Department of Education just released data from the 2009-10 school year that shows that tens of thousands of school-aged children were secluded or restrained. The Department’s data are from 72,000 schools that educate 85 percent of the nation’s students. It shows that 70 percent of students subjected to the techniques have disabilities. There are no current federal standards on the use of the techniques in schools.

“This data should be a wakeup call to educators across the country – the use of restraint and seclusion is a national problem that disproportionately impacts students with disabilities,” said Peter V. Berns, CEO of The Arc. “There are positive ways to manage behavior problems and school personnel need training in those methods.”

Students are not the only ones being hurt when restraint and seclusion are used. School staff sometimes is hurt when they use the practices, resulting in staff taking sick leave or even retiring from teaching.

“The Arc is concerned with the safety of students as well as school personnel and we support national standards that help prevent dangerous behavior problems and promote a positive and safe school climate,” commented Berns.

The Arc urges Congress to act quickly to protect all students in all schools, and pass the Keeping All Students Safe Act immediately.

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The Arc Announces New Chapter in Montana to Serve People With Disabilities and Their Families

Washington, DC – This month, The Arc officially announced the affiliation of AWARE, Inc. in Montana as a state chapter. The affiliation of AWARE will mark the first time in over a decade that The Arc will have a statewide presence in Montana.

“We are very excited to have such a strong partner in Montana and look forward to working with AWARE. Together, The Arc and AWARE will help provide individuals with intellectual and developmental disabilities throughout Montana a powerful voice,” said Peter V. Berns, CEO of The Arc.

Founded in 1976 as a non-profit corporation, AWARE delivers services for people with challenging mental health, emotional, and in some instances, physical disabilities, who otherwise would be served in a more restricted setting or perhaps would not be served at all.

With more than 900 employees in 26 communities across Montana, AWARE has been providing homes and training for adults with developmental disabilities and services for adults and children with mental illness for more than 30 years. Among AWARE’s services are group home living, supported independent living, supported employment and center-based employment.

AWARE provides:

  • case management for adults with developmental disabilities;
  • group homes for children needing personal attention and individual treatment for serious emotional disturbances;
  • case management for children and adults needing mental health treatment;
  • other youth treatment support services — family support, transitional living and treatment foster homes;
  • employment services for the chronically unemployed; and
  • transportation tailored to people with disabilities and special needs.

During their first week as a chapter of The Arc, AWARE participated in an invitation-only event at the White House. In February, 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 and White House Chief of Staff Jack Lew. Many of the speakers, including President Obama, referenced the impact advocates from The Arc made during budget negotiations to protect Medicaid.

In becoming a state chapter, AWARE will be able to tap into the many resources The Arc’s National Office can provide. Larry Noonan, CEO of AWARE has expressed his interest in expanding the policy work that is being done in Montana. Noonan and his team are already very active with Montana’s Congressional delegation and in local politics throughout the state. The Arc will serve as an additional resource to them with support from our National Office’s experienced federal public policy team, a number of publications, newsletters and alerts about disability policy, and important updates straight from Washington, DC.

“Like The Arc, AWARE believes in promoting and protecting the human rights of people with intellectual and developmental disabilities and supporting their full inclusion and participation in the community,” said Noonan. “We share The Arc’s core values of people first, equity, community, self-determination and diversity.”

“Our affiliation with The Arc gives us the opportunity to be involved with folks from all over the country who are dealing with the same issues and problems we deal with in Montana. And the relationship helps with efforts to put AWARE’s Apostrophe magazine, a publication for, by and about people with developmental disabilities, into the hands of people across the country,” added Noonan.

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Developmental Disabilities Awareness Month Q&A With Lynell Tucker

This month, The Arc’s blog will feature a Q & A with members of The Arc’s national office staff to help raise awareness of issues important to the IDD community during Developmental Disabilities Awareness Month. Lynell Tucker is the program manager for The Arc’s School-to-Community Transition Program funded by the Walmart Foundation. The program supports chapters of The Arc in improving outcomes for young adults transitioning to life beyond high school.

Q. Lynell, you are deeply involved in The Arc’s School-to-Community Transition program funded by the Walmart Foundation. Help us raise some awareness about transition issues for the IDD community during Developmental Disabilities Awareness Month. What do you think is the biggest challenge facing young people with intellectual and developmental disabilities when they finish high school and have to transition to post-secondary education, employment or life in the community?

“Youth with IDD have a world of opportunity open to them.”

A. The biggest challenge seems to be for people with intellectual and developmental disabilities to know what they want to do after high school. Youth with IDD have a world of opportunity open to them; however, they may not always know that. We are seeing that there is a heavy focus on getting on waiting lists, applying for the adult service system, and making sure that they are able to access the necessary services and supports once they graduate. These are all vital aspects of transitioning into adult life; however, just as important is what one wants to do with their life – their hopes and dreams. Students and youth participating in the School-to-Community Transition Initiative are discovering for themselves what interests them. Do they want to go to college? Work in the community? Live independently, and so much more? The participating chapters of The Arc who are implementing transition programs are facilitating this discovery through the use of life planning tools. Students are overcoming the challenges by determining their future for themselves.

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Developmental Disabilities Awareness Month Q&A With Laurie Ertz

This month, The Arc’s blog will feature a Q&A with members of The Arc’s national office staff to help raise awareness of issues important to the IDD community during Developmental Disabilities Awareness Month. Laurie Ertz is the Director of Chapter Excellence and works with our national network of 700_ chapters to give them the tools and resources they need to better serve people with IDD.

Q. Laurie, you recently helped launch The Arc’s National Council of Self Advocates. Why is it important to have people with intellectual and developmental disabilities in leadership roles at The Arc.

A. People with intellectual and developmental disabilities (IDD), whether they identify as self advocates or not, are quite simply the only people who can tell us what truly matters to them. As much as the people who love and support them care about their well-being, that caregiver cannot completely put him or herself in the shoes of a person with an intellectual or developmental disability. So, as an organization, we need to fully include people with IDD, especially in leadership roles to even hope to move forward toward our goal. It’s all about perspective and the unique perspective of an individual with IDD is the most valuable resource we have as a movement.

“[They] are quite simply the only people who can tell us what truly matters to them.”

The National Council of Self Advocates was developed to ensure that individuals with IDD have a clear voice in creating lives that allow them meaningful choices for a promising future. It’s designed to help them be leaders in their communities, share their values of self determination and help educate their communities about IDD. We invite anyone with IDD who is a member of The Arc to participate in or contribute to the Council and let us hear your voice!

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Top Five Reasons to Attend the 2012 Disability Policy Seminar

Are you joining us at the 2012 Disability Policy Seminar in Washington, DC? If you haven’t made up your mind yet, here are some great reasons to register. We don’t want you to miss your single best opportunity to connect with the intellectual and developmental disability movement this year, but if you’re still on the fence, consider this:

Top Five Reasons to Attend the 2012 Disability Policy Seminar:

  1. Meet face-to-face with your elected representatives and take advantage of a unique opportunity to let them know in person what’s important to you and what they can do to earn your vote. On the third day of the seminar, we’ll visit Capitol Hill for scheduled meetings with Congressional representatives and their staff.
  2. Learn how to be an effective advocate, not just in Washington, but in your community once you return home. The information provided at the Disability Policy Seminar will give you a broader and better understanding of the role public policy plays in the day-to-day lives of people with IDD and what you can do to create change. You can event attend a pre-event Seminar Trainee Orientation webinar hosted by AUCD.
  3. Make your mark on an important election. The focus of the Seminar is giving you the tools you need to educate elected officials and candidates running for office on IDD community’s most crucial issues. The Seminar should inspire you to engage in the political process and give you the information you need to understand exactly how public policy impacts people with IDD.
  4. Network. Meet with other from your state and across the country who share your passion. If you’re a self advocate or a sibling of someone with IDD, attend special breakfast meet & greets to find out more about how you can get involved in The Arc’s new National Council of Self Advocates or our The Arc’s National Sibling Council.
  5. Visit Washington DC’s famous Cherry Blossom Festival! There’s no reason you can’t have a little fun while you’re here. Explore DC from your convenient downtown base at the Grand Hyatt where restaurants, entertainment, shopping, public transportation and the historic National Mall where the cherry blossoms bloom is close by.

Get the best rates and availability – special early registration rates until March 20. Get more information or register and book your room now at

The annual Disability Policy Seminar is hosted by: The Arc, United Cerebral Palsy (UCP), Association of University Centers on Disabilities (AUCD), American Association on Intellectual and Developmental Disabilities (AAIDD), National Association of Councils on Developmental Disabilities (NACDD), and Self-Advocates Becoming Empowered (SABE).

Sponsored by Hammer Travel – a unique travel planning resource for people with disabilities.