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The Arc Reacts to the U.S. Supreme Court’s Decision on the Affordable Care Act

/in /by The Arc

Washington, DC – The Arc released the following statement in response to the U.S. Supreme Court’s decision to uphold the Affordable Care Act.

“People with intellectual and developmental disabilities have been waiting for generations for the insurance reforms put in place by the Affordable Care Act. Today’s ruling removes any doubts that the law Congress enacted should stand and will benefit millions of people with and without disabilities. It ends discriminatory insurance practices and makes health coverage more affordable and accessible – important protections which too many people with disabilities have been deprived of for too long.

“But the ruling is not perfect for people with IDD. The Arc is concerned that disallowing the federal government the ability to withhold Medicaid dollars from states that don’t expand their program to cover more of the uninsured might mean that people with IDD who would have benefited from the expansion could be left behind. Medicaid is an incredibly important lifeline for people with IDD, providing health care and long term services and supports.

“We will carefully watch how states react to this development and encourage our advocates across the country to put pressure on their state leaders to do the right thing and expand their Medicaid program,” said Marty Ford, Director of Public Policy for The Arc.

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The Arc Responds to New Report on Alcohol Intake During Pregnancy

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Washington, DC – The Arc is concerned about new research released earlier this week from Denmark stating that drinking low to moderate levels of alcohol during early pregnancy will cause no ill effects to children. The Arc’s over 700 chapters have a long history of raising awareness, educating and providing training to their communities about the dangers of drinking while pregnant. Unfortunately, studies like this serve to minimize alcohol’s severe effects on an unborn baby, placing doubt in the minds of mothers about the actual risk of drinking while pregnant. When studies are released that suggest alcohol intake can be safe during pregnancy, The Arc takes the opportunity to speak up and educate the public about the very real dangers of drinking while pregnant.

Fetal Alcohol Spectrum Disorders (FASDs) describe the range of effects that can occur in an individual whose mother drank alcohol during pregnancy. These effects can include physical, behavioral, mental and/or learning disabilities with possible lifelong implications. FASD affects an estimated 40,000 infants each year – more than Spina Bifida, Down Syndrome and Muscular Dystrophy combined.

“Why put your baby at risk? Fetal Alcohol Spectrum Disorders are 100% preventable if mothers abstain from drinking during pregnancy. The Arc advocates not drinking during pregnancy, and will continue to push this message because studies like this ignore the fact that completely abstaining takes the risk of having a baby with a Fetal Alcohol Spectrum Disorder off the table,” said Peter V. Berns, CEO of The Arc.

As other opponents of the study highlighted, there are a number of factors that weren’t taken into consideration that warrant the public’s attention. These include the fact that some developmental delays are not detected as young as 5 years old, the differences in metabolism amongst women, and variances in genetic susceptibility.

The Arc advocates for and serves people with IDD, including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of over 700 chapters across the country promoting and protecting the human rights of people with IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

The Arc, together with the Substance Abuse and Mental Health Services Administration (SAMHSA) Fetal Alcohol Spectrum Disorder Center for Excellence, recruits and supports the Self-Advocates with FASD in Action (or SAFA) Network. SAFA was established a little over a year ago to build and support a network of people with FASDs and give them the platform to be self-advocates.

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The Arc Responds to the National Disability Rights Network’s Newest Report

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Washington, DC – The Arc of the United States applauds the National Disability Rights Network for its report “Devaluing People with Disabilities: Medical Procedures that Violate Civil Rights.” The report reviews the facts of Ashley X, who five years ago made national news when her parents decided to medically stunt her physical growth and maturation. The report presents a compilation of similar experiences and “treatment” of individuals with disabilities that discriminates against them based on their disability and undermines the integrity of their unique individuality.

“We are saddened and angered by the evidence NDRN presents about people with intellectual and/or developmental disabilities who continue to experience disability–related discrimination in decisions to provide, delay, deny, or limit health care interventions or treatments. Protections must be in place to assure that an individual’s health, well-being, and expressed wishes, if known, are the only justifiable bases for making medical decisions,” said Peter V. Berns, CEO of The Arc.

The Arc has a history of speaking out against such medical atrocities and advocating for changes to ensure the rights of individuals with intellectual and/or developmental disabilities are protected. For years, The Arc has held the belief that growth attenuation treatment to modify a child’s typical development should be prohibited.

The Arc looks forward to working with NDRN and other organizations to create additional safeguards to protect the civil rights of people with disabilities.

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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 (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.

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 IDD, 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 IDD 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 IDD 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 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 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

/in /by The Arc

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. Learn more at www.autismnow.org.

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The Arc Opposes House Republicans’ Budget Blueprint

/in /by The Arc

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

/in /by The Arc

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 (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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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 (IDD) across the country to join. The first national council of its kind, the NCSA will allow individuals with IDD 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 IDD 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 IDD 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 IDD in the work of The Arc. Its primary purpose is to empower persons with IDD 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 IDD, and become active leaders in their communities. In addition, the Council will also be promoting leadership roles for individuals with IDD in local chapters of The Arc and supporting The Arc’s commitment to employing individuals with IDD. 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 IDD 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 IDD 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”

/in /by The Arc

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 (IDD). 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 IDD 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 IDD. 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 IDD 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 IDD 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 IDD 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.