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The Arc Audi Racing Program Gives People With Disabilities a Hands-On Look at the Racing World

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Washington, DC – The Arc is excited to announce The Arc Audi Racing Program, a new partnership between The Arc and Istook’s Motorsports. The goal is to provide a unique opportunity for people with intellectual and developmental disabilities (I/DD) 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.

A partnership with Istook’s Motorsports, Volkswagen Group of America, and the Pirelli World Challenge series, The Arc Audi Racing Program will invite 20 individuals with I/DD, their support staff and staff from select chapters of The Arc to be honorary crew members at seven races, giving them a unique race day experience and helping to raise awareness of The Arc and I/DD among racing fans everywhere. This year, The Arc Audi Racing Program expects to compete in Utah, Michigan, Ohio, in three races in California, and one in Canada. The first race will be Sunday, April 15 in Long Beach, California, with The Arc of Los Angeles and Orange Counties participating.

“We are thrilled to be able to offer individuals with intellectual and developmental disabilities the opportunity to be a part of a professional race crew team for a day. Through this partnership, we hope to show the public that people with I/DD are capable of achieving their dreams in the professional field of their choice, including the motor sport industry,” said Peter Berns, CEO of The Arc.

Professional race team owner Don Istook and his wife Laurie have a personal connection to the I/DD 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 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 seven races this year. Participants will be able to see The Arc Audi Race Team cars, talk to the crew and play a hands-on role in preparing the cars for the race.

“Mark and Tyson have really taken to the motorsports industry, and they have opened my eyes to the fact that people with disabilities can be a part of any profession with the right support. This partnership with The Arc was really just an idea Laurie and I had that we hoped would allow more people with disabilities to experience what we experience at the race track, and it has blossomed into a great opportunity for us and for The Arc’s network,” said Don Istook.

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

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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 www.cdc.gov/ActEarly.

“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.

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The Arc Opposes House Republicans’ Budget Blueprint

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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 (I/DD), 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

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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

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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 (I/DD). 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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The Arc Announces the National Council of Self Advocates

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Washington, DC – Today, The Arc is officially launching the National Council of Self Advocates of The Arc (NCSA), and inviting individuals with intellectual and developmental disabilities (I/DD) across the country to join. The first national council of its kind, the NCSA will allow individuals with I/DD to join a network of leaders representing the full spectrum of ages and abilities across The Arc’s national chapter network. While promoting the active involvement of individuals with I/DD in the work of The Arc, this Council will give self-advocates the chance to support each other and provide learning opportunities as they grow as advocates in their community.

“This Council allows self-advocates to share their unique perspective and truly make an impact in their communities. While we work nationally on behalf of people with I/DD and their families, nothing is quite as powerful as hearing directly from self-advocates about what is important to them. They can be our movement’s strongest messengers, and this council will harness that power,” said Peter V. Berns, Chief Executive Officer of The Arc.

The NCSA was developed to foster the active involvement of individuals with I/DD in the work of The Arc. Its primary purpose is to empower persons with I/DD to voice their opinions about what is important to them and to ensure that they are afforded the same opportunities as everyone else to have a meaningful life in the community. In joining the Council, members will be able to network with others who are involved in advocacy work, educate the public about the issues that are important to people with I/DD, and become active leaders in their communities. In addition, the Council will also be promoting leadership roles for individuals with I/DD in local chapters of The Arc and supporting The Arc’s commitment to employing individuals with I/DD. Learn more about the focus areas of the Council and how to join.

The NCSA is being co-convened by Barbara Coppens, Joe Meadours, and Kurt Rutzen who are all members of The Arc’s National Board of Directors. They each have a deep personal interest in this Council and are looking forward to creating a strong network of self-advocates across the country.

“I am working to educate self-advocates like myself, siblings, and family members to be more involved in advocating for our rights,” said Barbara Coppens, who has a long history of fighting for people with I/DD in New Jersey. She works tirelessly, educating legislators in New Jersey about why it is so important to remove the “r-word” from state statutes and writing articles on self-advocacy to inspire others like her to join in the movement.

“This is an opportunity for us to voice our opinions and show what self-advocates across the country care about,” Joe Meadours said. “If we don’t have the proper services we won’t have a quality life.” Joe has been an advocate for many years and wants to use his story to encourage individuals with I/DD to be advocates for themselves and others. He has worked in five states supporting the self advocacy movement; most recently he served as Executive Director for People First of California.

“I believe that The Arc’s National Council of Self Advocates gives the opportunity for people with disabilities to really say what they feel and to get their voices out there in a way they haven’t before,” said Kurt Rutzen, who lives in Minneapolis, Minnesota and works for the University of Minnesota’s Institute on Community Integration. Kurt began his career by conducting interviews for Quality Assurance Region 10, an organization that creates and implements person-centered interviews that enhance the quality of life for persons with developmental disabilities in Minnesota. Through this job, he was introduced to The Arc of Southeast Minnesota.

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The Arc Brings Issues Facing People With Disabilities to the White House, President Obama Tells Disability Community “I’ve Got Your Back”

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Washington, DC – Today, 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 (I/DD). The session, held just for The Arc, included an unannounced visit from President Barack Obama. The President spoke of his commitment to people with disabilities saying, “I’ve got your back.”

This surprise appearance by the President of the United States was the highlight of the day for many attendees, along with the opportunity to interact with high level government officials about how they can support people with I/DD to live in the community. Over the course of the day, leaders of chapters of The Arc were briefed on topics ranging from Medicaid to education to community living and employment for people with I/DD. Many of the speakers, including President Obama, referenced the impact advocates made during budget negotiations to protect Medicaid, and encouraged The Arc and others to continue these efforts.

Another unannounced speaker was White House Chief of Staff Jack Lew, who reiterated the President’s opposition to turning Medicaid into a block grant. He also took questions from the audience, including Barbara Coppens, a member of the national board of directors of The Arc and a self-advocate who took the opportunity to speak about the importance of self-advocacy by people with disabilities.

“I tell other self-advocates – you’ve got to get out there and advocate for yourself because you can’t rely on other people to make change for you,” said Coppens to Chief of Staff Jack Lew.

The day was organized by Kareem Dale, Special Assistant to the President for Disability Policy, who kicked off the agenda by welcoming guests and speaking about employment issues. The Arc heard from Cecilia Muñoz, Director of the White House Domestic Policy Council, who spoke of their commitment to providing services and supports to all in need. Other speakers included Carol Galante, Acting Assistant Secretary – Federal Housing Administration Commissioner, Department of Housing and Urban Development; Cindy Mann, Deputy Administrator, Centers for Medicare and Medicaid Services; Robert Gordon, Executive Associate Director, Office of Management and Budget; and Tom Perez, Assistant Attorney General for Civil Rights, Department of Justice.

Assistant Attorney General Perez discussed the recent Department of Justice settlement with the Commonwealth of Virginia regarding people with I/DD who live in any of its five institutions who could live in the community. He spoke about the bipartisan work going on across the country to implement the Olmstead decision, which states that under the Americans with Disabilities Act (ADA), unnecessarily institutionalizing a person with a disability who, with proper support, is capable of and who wants to live in the community can amount to discrimination.

After a tour of the East Wing of the White House, advocates from The Arc took part in policy breakout sessions that allowed for more detailed discussions on certain issue areas, like community living, family caregiving, education, and Medicaid. The purpose of these briefings was to allow White House and administration officials to engage in a dialogue with leaders of The Arc about how government policies affect the lives of people with I/DD and impact their ability to live full, independent lives. Given the Department of Education’s announcement yesterday to allow ten states waivers from some of the No Child Left Behind law requirements, the education session with Alexa Posny, Assistant Secretary, Office of Special Education and Rehabilitation Services, was incredibly timely, as were meetings with representatives from the Department of Health and Human Services, Department of Justice, Administration on Aging, and the White House Domestic Policy Council.

“This unique, face-to-face opportunity to speak directly to people in positions to make change from within the government allowed leaders of The Arc to make the voices of the millions of people with I/DD heard at the White House. Our network seized on this opportunity, and we left the White House feeling a sense of accomplishment and inspiration for continued advocacy that we will take back to our communities to help grow our movement,” said Peter V. Berns, CEO of The Arc.

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The Arc’s Leaders Invited to the White House for High Level Briefings and to Advocate for People With Disabilities

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Washington, DC – Tomorrow, 150 leaders of The Arc from across the country will attend a White House Community Leaders Briefing. Over the course of the day, leaders of chapters of The Arc, including people with intellectual and developmental disabilities (I/DD), will be briefed by high level White House and Administration officials on topics ranging from Medicaid to education to community living and employment for people with I/DD, and have the chance to engage with and ask questions of these officials.

“This opportunity comes at a pivotal time for The Arc in our work to advocate for people with intellectual and developmental disabilities. Our chapter leaders will add an invaluable perspective, from the front lines of our movement, in our ongoing conversations with senior officials at the White House. I’m looking forward to The Arc’s network flooding the halls of the White House and listening to advocates from across the country tell their stories,” said Peter V. Berns, CEO of The Arc.

During the day-long event, participants will hear from senior White House and administration officials. Additionally, there will be a series of policy breakout sessions that will allow for more detailed discussions on certain issue areas, like community living, education, and Medicaid. The purpose of these briefings is to allow White House and administration officials to hear from leaders of The Arc about how government policies affect the lives of people with I/DD and impact their ability to live full, independent lives. This unique, face-to-face opportunity to speak directly to people in positions to make change from within the government will allow leaders of The Arc to make the voices of the millions of people with I/DD heard at the White House. As The Arc gears up to raise awareness of I/DD during Developmental Disabilities Awareness Month in March , chapter leaders can take home new tools to help individuals in their communities utilize programs of the federal government.

“The Arc, as one of the largest organizations working with people with intellectual and developmental disabilities, brings a wealth of experience and insight to discuss today’s most important concerns facing persons with intellectual and developmental disabilities. We’re looking forward to having them here at the White House to deepen our partnership, and to discuss the issues we care about most,” Jon Carson, the Director of the Office of Public Engagement at the White House.

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The Arc Responds to the U.S. House of Representatives Vote to Repeal the CLASS Program

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Washington, DC – The Arc of the United States, released the following statement in response to the U.S. House of Representatives vote to repeal the Community Living Assistance Services and Supports (CLASS) Program.

“Repealing the CLASS Program could force Americans to wait another generation for a solution to the need for long term services.  This bill doesn’t change the fact that many Americans require these services, and it certainly doesn’t relieve the pressure off of Medicaid so that Medicaid can better serve the needs of low income communities.  This vote won’t be the last say on this issue, and The Arc stands ready to work with Congress and the Administration to find a workable solution,” said Peter V. Berns, CEO of The Arc.

The Community Living Assistance Services and Supports (CLASS) Program was created by the Affordable Care Act to help working adults prepare for their future in the event they need help maintaining independence in the community. If CLASS is not implemented, the Medicaid program will continue to take on the load of long term service needs for many individuals. Average home and community-based care now costs over $21,000 per year.  Few Americans have insurance to cover these costs.  Only 3% have private long term care insurance and the majority are forced to impoverish themselves to qualify for Medicaid.

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The Arc’s Reaction to the Department of Justice and Commonwealth of Virginia Settlement Regarding Institutions

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Washington, DC – The Arc, the nation’s largest and oldest human rights organization for people with intellectual and developmental disabilities (I/DD) serving more than a million individuals and their families, issued the following statement on the news that the Commonwealth of Virginia has reached a deal with the U.S. Department of Justice regarding four of its institutions for people with I/DD.

“This settlement is a big step forward in bringing people with intellectual and developmental disabilities out of the shadows and into communities across Virginia, where they belong. The Department of Justice’s commitment to monitoring and oversight of the implementation of this agreement will be key to ensuring that the shift to community based services away from institutions will be successful for people with I/DD in Virginia.

“The Arc of Virginia and the network of chapters across the state have been instrumental in putting this agreement in place. They will continue their work at the state capitol to advocate for additional resources for people with disabilities so that they can move off of waiting lists and begin receiving the supports they need to live independent lives in the community,” said Peter V. Berns, CEO of The Arc.