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Celebrating Supplemental Security Income

This week, The Arc celebrates the40th anniversary of Supplemental Security Income (SSI), our nation’s safety net for low-income seniors and people with disabilities.

Forty years ago, many people with significant disabilities – like intellectual and developmental disabilities (IDD) – who were unable to support themselves with work or savings were forced to rely on a patchwork of state income support programs. Each state had its own rules for who could get benefits, for how long, and for how much – and not every state offered aid.

In 1972 SSI replaced this fragmented, woefully inadequate system with a national program offering a minimum monthly income for low-income people with significant disabilities and the elderly. On signing SSI into law, President Richard M. Nixon noted that “This legislation once again provides dramatic and heart-warming evidence that America is the country that cares-and translates that humanitarian care into a better life for those who need, and deserve, the support of their fellow citizens.”

In 2012, SSI provides monthly cash benefits to over 8 million children and adults, including many with IDD.

The Arc knows that SSI is a lifeline for people with IDD – and that it’s so much more than dollars and cents. SSI helps many adults with IDD secure housing to help them live in the community and pay for essentials like clothing, transportation, and utilities. It helps parents of children with IDD meet the costs of raising a child with a significant disability, and replaces lost income when a parent must take time off work to help care for a child. Without SSI, many people with IDD would face terrible consequences including potential homelessness or institutionalization.

This week we celebrate SSI’s 40th anniversary, and call on Congress to keep SSI strong for another 40 years. The Arc is fighting to keep SSI from being cut as part of Congressional deficit reduction efforts, and has many ideas for strengthening SSI, including ways to make SSI work better for beneficiaries who wish to work.

Subscribe to The Arc’s Capitol Insider for updates to learn how you can help make sure that SSI and other vital programs are there for people with IDD.

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An Inspiring and Invigorating National Convention and International Forum

This past Saturday evening, The Arc and Inclusion International wrapped up an inspiring and invigorating National Convention & International Forum. If you weren’t able to join us in Washington, D.C. for the event, here are some photos and a video to give you a taste of what you missed.

Participants from across the U.S. and more than 25 countries including the U.K., Germany, China, Cambodia, Israel, New Zealand, Malwai, Spain, Panama and Kenya came together to promote the concept of inclusion for people with intellectual and developmental disabilities. They discussed the tough issues, socialized and celebrated, and learned much from each other through informative sessions, meetings and fun events.

We heard from the former first lady of Panama who is a fierce advocate for people with IDD along with Eve Hill from the U.S. Department of Justice speaking about her efforts to enforce laws which help people with IDD live fuller lives in their communities with greater accessibility. Self-Advocate Ricardo Thornton and the chief of the UNICEF Disability Section shared their experiences with us and we were treated to a performance from the inclusive arts group, Artstream.

The Arc elected a new president of our Board of Directors, Nancy Webster, along with several new board members. And our out-going President, Mohan Mehra presented the President’s Award to Social Security Commissioner Michael Astrue for his work in reducing the amount of time people with disabilities must wait to recieve benefits from his Administration. Also, we honored the amazing advocacy work of The Arc of Virginia and the efforts of Don and Laurie Istook of Istook’s Motorsports for helping create The Arc Audi Racing Program – a unique initiative to introduce professional race teams and fans and people with IDD to each other.

We enjoyed a thought-provoking and entertaining The Arc & Sprout National Film Festival and we danced the night away with the National Hand Dance Association.

See all the highlights of The Arc and Inclusion International’s National Convention and International Forum in a video, produced by Jerry Smith of the Research & Training Center on Community Living, Institute on Community Integration, University of Minnesota.

We thank everyone who helped make this year’s event such as success and we hope you will consider joining us in Bellevue, Washington (near Seattle) in 2013 for The Arc’s National Convention and International Forum.

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Justice for All, Even for Victims With Intellectual Disabilities

Victims of crime who have intellectual and developmental disabilities face significant barriers when accessing the justice system. This became starkly evident in a recent case from Connecticut. Richard Fourtin was convicted of sexually assaulting a twenty-five year old woman with significant intellectual and physical disabilities including cerebral palsy and hydrocephalus. In the case of Fourtin v. Connecticut, the Connecticut Supreme Court overturned the conviction earlier this month, finding that the woman could have used “gestures, biting, kicking and screaming” to indicate her lack of consent to sexual intercourse. In response, The Arc of Connecticut signed onto an amicus curiae brief with other disability agencies and they are working toward revising state laws regarding victims with disabilities.

This case ignited fury among disability and victim advocates alike because the prosecution seemed to place blame on the victim for not doing what she either was incapable of doing (many victims freeze when they are being assaulted and are not sure how to respond or wonder if doing so could result in personal injury) or perhaps didn’t realize she had a choice to do. She may not have realized the actions against her were criminal. People with disabilities often don’t understand or appreciate what is happening to them when a sexual assault occurs, especially when they haven’t been taught what acts are considered a crime. Most people with disabilities experience violence more than once throughout their lives, and if they are living in a pattern of abuse, it is especially hard for them to recognize the criminal nature of an offender’s behavior.

Ongoing education to prevent sexual violence must be a priority in our advocacy communities due to the sheer number of people this problem affects, and the resulting untold, devastating consequences it has on so many lives. We must also concentrate on educating lawmakers, law enforcement and the courts about issues of victimization of people with IDD. Consider this data from the National Crime Victim Survey (revised):

  • In 2010, the victimization rate for people with disabilities was almost twice the rate among people without disabilities.
  • Serious violence (including rape and sexual assault) accounted for about 50% of violent acts against people with disabilities.
  • People with cognitive disabilities (which includes intellectual and developmental disabilities) experienced the highest rate of violent victimization.

October is National Crime Prevention Month, it’s a great time for chapters of The Arc and other advocates to support crime victims with intellectual disabilities.. Reaching out to local victim assistance agencies and offering education and support in their effort to help crime victims with disabilities is a great first step. Consider partnering together in a media campaign about preventing the victimization of people with disabilities. Support self-advocates who are beginning to speak up for themselves against violence in their lives by helping them develop brief presentations about this topic that they can take to the community (schools, police departments, rape crisis centers). And, let’s band together to be sure our support of people with IDD extends to making sure crime victims are not victimized again by the criminal justice system.

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Follow the 2012 National Convention and International Forum

National Convention and International Forum, The Arc, Inclusion International: Achieving Inclusion

Just like in years past, we’ll keep you up to date on the 2012 National Convention and International Forum in Washington, D.C. with social media and other online channels. If you can’t join us in person, don’t worry – there are many ways you can be a part of the Convention online:

  1. Follow this blog. We’ll post all the news and information coming out of convention each day, and try to post as many photos as we can.
  2. Like us on Facebook and follow us on Twitter. Each day, we’ll be posting real-time updates on our social media profiles as well, in addition to meatier updates here. On Twitter, you can use the hash tag, #AchieveInclusion, to follow the conversation centered around the event. If you’re at Convention, and tweeting, please join the discussion. Don’t forget to share your photos there too!
  3. Follow our new blog focused on chapter called We Are The Arc. We’ll post photos as we get them there.
  4. Use the Convention website. Our event website is still the best place to go for all the particulars, like the schedule, list of sponsors and exhibitors and more.

We’re looking forward to seeing everyone this year!

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Why Are We Still Talking About the “R-Word”?

Sadly, people of all walks of life are still using it. The most recent heinous example came from conservative commentator Ann Coulter last night, when she not only used it in a tweet, she referred to the President of the United States with the word. That’s wrong on two levels – one – the r-word has no place in our society, and two – the office of the President deserves more respect no matter who occupies it.

Words are powerful. While the r-word may not have the same emotion and meaning behind it to everyone, it’s a hurtful, disrespectful, and unacceptable word to people with intellectual and developmental disabilities. And that’s enough to remove it from the national dialogue.

The Arc is part of a large, national effort to “end the word” and we encourage you to talk to your friends, neighbors, coworkers, family – really, anyone you cross paths with – and educate them about why this word is so wrong. The r-word has no place in politics or any other social or professional setting. We need you to spread the word to end the word!

Join us in this fight – because with your help, we CAN end it!

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The Arc of Virginia to Receive National Award for Victory on Closing Institutions

Washington, DC – On October 26, The Arc of Virginia will be honored with The Arc’s Advocacy Matters! Award for their ongoing advocacy work on behalf of individuals with intellectual and developmental disabilities (IDD) in Virginia. The Arc of Virginia played an instrumental role in the Commonwealth of Virginia and the U.S. Department of Justice (DOJ) reaching an historic settlement (U.S. v. Virginia Settlement Agreement) requiring the state to close some institutions and provide community-based services for thousands of individuals with IDD. The award will be presented during The Arc of the United States’ National Convention and International Forum. Jamie Liban, Executive Director of The Arc of Virginia will accept the award on behalf of the organization.

“The Arc of Virginia has tirelessly advocated on behalf of individuals with intellectual and developmental disabilities for decades. Like all civil rights victories, there were many advocates working for a common cause leading up to this historic settlement. We are proud of the amazing work of Jamie Liban, The Arc of Virginia Board of Directors and the thousands of advocates who helped make this a reality for the people of Virginia,” said Peter Berns, CEO of The Arc.

Judge John A. Gibney of the United States District Court for the Eastern District of Virginia issued an order approving the settlement in U.S. v. Virginia Settlement Agreement on August 23. The signing of the court order means that Virginia will move from a system that is reliant on large, segregated institutions to one that is focused on safe, integrated community-based services. Virginia will close four of five institutions and provide new Medicaid waiver services for more than 4,000 individuals. Once the waivers are fully funded, thousands of individuals with IDD will receive the services they need to remain in their homes in the community and many individuals living in institutions will be able to move into community settings.

Jamie Liban will also participate in a concurrent session with officials from the Department of Justice during convention. During the session, she will share The Arc of Virginia’s experience over the course of the DOJ investigation, negotiations and litigation, as well as The Arc of Virginia’s plans to continue its advocacy work throughout the implementation phase. The session will provide an overview of activities related to the U.S. v. Virginia Settlement Agreement and advise other chapters of The Arc on how they can support DOJ in their enforcement of the Americans with Disabilities Act and the Olmstead decision, a ruling that requires states to eliminate unnecessary segregation of people with disabilities and to ensure that persons with disabilities receive services in the most integrated setting appropriate to their needs.

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Get the Facts on Breast Cancer and People With IDD

October is National Breast Cancer Awareness Month.

People with intellectual disabilities (ID) tend to be less healthy than the general population and are at increased risk for many preventable and treatable conditions, including breast cancer.

According to the CDC, women who have disabilities are significantly less likely to have been screened for breast cancer in accordance with the recommended guidelines, thus placing them at a greater risk of breast cancer. Aside from non-melanoma skin cancer, breast cancer is the most common cancer among women in the United States. It is also one of the leading causes of cancer death among women of all races and Hispanic origin populations. Men can get breast cancer too, though they make up less than 1% of all cases of breast cancer.

Women with intellectual disabilities experience even greater barriers—both physical and attitudinal— that prevent them from getting the screening and preventive care they need. Here at The Arc of the United States, we are working hard to reduce health disparities and increase the longevity and quality of life for people with intellectual disabilities through our new HealthMeet™ program.

HealthMeet™ has identified some of the key barriers to care for people with ID including:

  • Lack of accessible information about healthy habits, or not enough help in navigating of health care systems and insurance plans
  • The cost of attending regular medical checkups and following up with a health provider on any risks identified during a checkup
  • Lack of health plan benefits and other insurance-related obstacles to high-quality care and choosing the right provider
  • Lack of communication training for health professionals, making interactions with people with ID difficult
  • Too much emphasis on someone’s disability in their health care, leading health professionals to skip routine screenings for common diseases or preventable health issues
  • Discrimination and stigma associated with disability

HealthMeet™ can serve as a catalyst to create powerful, innovative cascade solutions that will reduce health disparities for people with ID that ultimately result in their increased longevity and improved quality of life; and which will raise the public, health professional, and community consciousness of this great need.

Additional Resource:

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Don and Laurie Istook of Istook’s Motorsports to Receive National Award at The Arc’s Convention

Washington, DC – On October 25, Don and Laurie Istook will receive The Arc’s Image and Inclusion Award during the National Convention and International Forum. This award recognizes a person or group who has had an impact on accurate and positive portrayals of individuals with intellectual and developmental disabilities (IDD). In 2012, The Arc launched The Arc Audi Racing Program, a new partnership between The Arc and Istook’s Motorsports. The program provides a unique opportunity for people with IDD to get a taste of what it is like to be part of a fast-paced professional race crew at select races in the 2012 Pirelli World Challenge race series across the country, and serve as “Honorary Crew Members” with Don’s team.

“There is still a lingering misperception that individuals with intellectual and developmental disabilities can’t have meaningful jobs in the community. Don and Laurie Istook know better than that and have helped open the eyes of the racing community and many others through their work running The Arc Audi Racing Program. We admire the Istooks for bringing this innovative idea to The Arc earlier this year, but most of all we admire their work to promote the inclusion of individuals with disabilities in the community, the workforce, and now on racetracks across the country,” said Peter V. Berns, CEO of The Arc.

Long time racer and team owner Don Istook and his wife Laurie have a personal connection to the IDD community. Two of Laurie’s brothers, Mark and Tyson, have Fragile X, but this does not stop them from being an active part of Don’s professional race team pit crew. Inspired by their success, Don and Laurie contacted the national office of The Arc to propose a program to give select chapters of The Arc across the country the opportunity to be an integral part of five races in 2012. Participants in The Arc Audi Racing Program have been able to see the cars, talk to the crew and play a hands-on role in preparing the cars for the race. Chapters of The Arc have attended Pirelli World Challenge races in Long Beach, CA; Monterey, CA; Detroit, MI; Lexington, OH; and Sonoma, CA. With this experience in hand from 2012, the team is preparing for an even greater 2013 season, which will feature an additional Audi TT RS to make a two car team.

Speaking about her brother, Mark, Laurie Istook said: “Mark loves being able to say ‘I work for a race team.’ It just gives him a meaning and a purpose for his life. It gives him something to look forward to – that’s what we all want.”

She added: “I remember after the first race this year, Don came over and just hugged me for the longest time. And he said ‘I don’t ever remember feeling this great after a race.’”

Previous recipients of The Arc’s Image and Inclusion award include Lauren Potter and Robin Trocki from the hit TV show Glee and Dr. Temple Grandin, world renowned scientist.

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Social Security Administration Announces 1.7 Percent Cost-of-Living Adjustment for 2013

Today the Social Security Administration (SSA) announced a 1.7 percent cost-of-living increase for 2013. This modest increase will help preserve the buying power of Social Security benefits for nearly 62 million Americans, including many people with intellectual and developmental disabilities who receive benefits under the Social Security retirement, survivors’, and disability systems.

According to SSA, the average monthly retirement benefit will increase by $21, from $1,240 in 2012 to $1,261 in 2013. The average monthly benefit for a “disabled worker” will increase by $19, from $1,113 in 2012 to $1,132 in 2013.

Higher Medicare premiums will likely offset some of this increase. Changes in Medicare premiums will be announced later this year at

The cost-of-living increase will affect many parts of the Social Security system, including important thresholds under the Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) programs, including:

  • Substantial Gainful Activity (SGA) level – The SGA for SSDI and SSI will increase from $1,010 per month to $1,040 per month for non-blind beneficiaries, and from $1,690 per month to $1,740 per month for blind beneficiaries.
  • Trial Work Period (TWP) – The TWP for SSDI will increase from $720 per month to $750 per month.
  • SSI Federal Payment Standard – The SSI federal payment standard will increase for an individual from $698 per month to $710 per month, and for a couple from $1,048 per month to $1,066 per month.
  • SSI Student Exclusion – The SSI student exclusion monthly limit will increase from $1,700 to $1,730, and the SSI student exclusion annual limit will increase from $6,840 to $6,960.

Annual cost-of-living adjustments are a vital part of ensuring that Social Security beneficiaries do not see their buying power eroded by inflation. SSDI and SSI benefits are modest, averaging only about $1,111 per month for SSDI beneficiaries in the “disabled worker” category and $520 per month for SSI beneficiaries.

The Arc strongly supports ensuring adequate benefit levels. We recently joined 95 other organizations to send a letter to Congressional leaders to oppose a proposal to reduce these much-needed annual cost-of living increases. Subscribe to The Arc’s Capitol Insider for updates to learn how you can help make sure that Social Security and other vital programs are there for people with IDD.

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Disability Advocates Share the Stage at The Arc’s National Convention and International Forum

Washington, DC – Next week, The Arc will play host to nearly a thousand disability advocates from across the globe during The 2012 National Convention and International Forum. The theme, “Achieving Inclusion Across the Globe,” reflects The Arc’s partnership with Inclusion International for this year’s convention. This four-day event will allow world renowned advocates, self-advocates, experts in the disability field, and family members of individuals with intellectual and developmental disabilities (IDD) to come together and discuss shared experiences, policy, and advocacy techniques.

“We look forward to addressing issues facing individuals with intellectual and developmental disabilities not only domestically but internationally during this year’s convention. I hope each attendee can leave with the knowledge that their advocacy work, research, and experiences are shared with millions across the globe who are also working to promote inclusion for individuals with disabilities,” said Peter Berns, CEO of The Arc.

Professional race car driver and Istook Motorsports owner Don Istook and his wife Laurie are being honored with The Arc’s Image and Inclusion Award this year. This award recognizes a person or group who has had an impact on accurate and positive portrayals of individuals with IDD. In 2012, The Arc launched The Arc Audi Rac­ing Program in partnership with Is­took’s Motorsports. The program allowed individuals with IDD the chance to be part of a fast-paced professional race crew as Honorary Crew Members at select races in the Pirelli World Challenge.

The Arc will also be presenting the 2012 Advocacy Matters! Award to The Arc of Virginia. Earlier this year, The Arc of Virginia’s advocacy efforts were rewarded when the Commonwealth of Virginia and the U.S. Department of Justice (DOJ) announced a settlement requiring the state to move people with IDD out of institutions and provide community-based services through Medicaid waivers and family supports for thousands of individuals with IDD.

Some of the featured speakers include: Rosangela Berman-Bieler, Chief of the UNICEF Disability Section, Vivian Fernández de Torrijos, former First Lady of the Republic of Panama, Eve Hill, Senior Counselor to the Assistant Attorney General, U.S. Department of Justice, and Ricardo Thornton, an inspiring self-advocate who speaks publicly about his life in the community with his family.