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

/in /by The Arc

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 (I/DD). 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 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 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 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 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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Disability Advocates Share the Stage at The Arc’s National Convention and International Forum

/in /by The Arc

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 (I/DD) 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 I/DD. In 2012, The Arc launched The Arc Audi Rac­ing Program in partnership with Is­took’s Motorsports. The program allowed individuals with I/DD 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 I/DD out of institutions and provide community-based services through Medicaid waivers and family supports for thousands of individuals with I/DD.

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.

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The Arc Reacts to Disturbing Report on the Rights of Parents With Disabilities

/in /by The Arc

Washington, DC – The National Council on Disability’s new comprehensive report on the rights of parents who have disabilities reveals startling statistics showing how vulnerable these parents are to losing their children via the court system. According to their research, more than 4 million parents—6 percent of American mothers and fathers—have a disability. Yet their rights are often in jeopardy – the rate at which children are taken from parents who have intellectual and developmental disabilities (I/DD) is between 40% and 80%.

“This report uncovers the heartbreaking reality for too many families across the country – parents with disabilities are treated unjustly when it comes to their rights as parents, and far too many families are broken apart by outdated and discriminatory practices,” said Peter V. Berns, CEO of The Arc.

The National Council on Disability’s report provides a comprehensive review of the barriers and discrimination people with disabilities – including I/DD, psychiatric disabilities, sensory disabilities, and physical disabilities – experience when they are creating and maintaining families. Two-thirds of dependency statutes allow the court to reach the determination that a parent is unfit on the basis of the parent’s disability. In every state, disability may be considered when determining the best interest of a child for purposes of a custody determination in family or dependency court. The National Council on Disability wrote: “People with disabilities are the only distinct group that struggles to maintain custody of its children.”

In positive news, a chapter of The Arc was particularly highlighted by the National Council on Disability for their good work in this area. The United Arc of Franklin and Hampshire Counties in Greenfield, Massachusetts runs a program called The Positive Parenting Resource Center which provides services and support to families headed by parents with I/DD, including one-on-one support, education groups, mentoring, and more.

The report highlights twenty findings, makes numerous recommendations, and provides examples of how laws in Kansas and Idaho have been changed to protect the rights of parents with disabilities.

“The good news is that there are plenty of ways that we can improve the lives of parents with disabilities, illustrated by The United Arc of Franklin and Hampshire Counties and other organizations across the country. Now we must put pressure on decision makers to enact the changes necessary that protect parental rights, before more families are impacted by decisions that discriminate against disability,” said Berns.

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The Arc Launches “eXplore eRecycling” Sustainability Initiative

/in /by The Arc

Washington, DC – The Arc of the United States is launching its “eXplore eRecycling” initiative, funded by a $465,000 grant from the Walmart Foundation. Through the initiative, 10 chapters of The Arc will be awarded funds to help develop or enhance electronic waste management programs that offer community-based employment opportunities for people with intellectual and developmental disabilities (I/DD).

“The eXplore eRecycling initiative is a wonderful chance to show how individuals with intellectual and developmental disabilities can excel in cutting edge jobs while earning competitive salaries. By bringing together the disability and the e-recycling communities, we hope to create more employment opportunities for individuals with disabilities,” said Peter Berns, CEO of The Arc.

Each sub-grantee will be awarded a grant to start or expand their electronic waste recycling program. Throughout the program, sub-grantees will engage in peer learning and network with one another. The peer learning aspect of this grant will allow sub-grantees to share expertise and knowledge regarding topics pertinent to e-recycling and employment with each other. They will also have the unique opportunity to interact with members of an Expert Advisory Committee made up of leaders from the e-recycling, environmental, disability, and business fields. These experts will provide their knowledge and perspectives to identify practice and policy recommendations that further electronic waste conservation efforts and competitive employment outcomes for people with I/DD.

Members of the Expert Advisory Committee work for a variety of organizations including: National Youth Leadership Network, University of Maine’s Center for Community Inclusion and Disability Studies, Disability Rights New Jersey, University of Vermont-Center on Disability and Community Inclusion, Basel Action Network, Institute of Scrap Recycling Industries, Inc., Good360, Arc Thrift Stores, National Center for Electronics Recycling, Northeast Recycling Center, Kansas University Center on Developmental Disabilities, and NISH.

The sub-grantees are listed below in alphabetical order:

  • AHRC Nassau – Long Island, NY
  • Genesee ARC – Batavia, NY
  • Kreider Services – Dixon, IL
  • Seneca Cayuga ARC – Waterloo, NY
  • SouthStar Services – Chicago Heights, IL
  • The Arc of Clarion and Venango Counties – Clarion, PA
  • The Arc of Greater Haverhill-Newburyport – Haverhill, MA
  • The Arc of Hamilton County – Chattanooga, TN
  • The Arc of Madison County – Huntsville, AL
  • The Arc of the Virginia Peninsula, Inc. – Hampton, VA
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The Arc Receives Award From Centers for Disease Control for Cutting Edge HealthMeet Project

/in /by The Arc

Washington, DC – The Arc is excited to announce that it has been awarded a three-year cooperative agreement through the Centers for Disease Control (CDC) to run a new project called HealthMeet.

HealthMeet aims to improve the health of people with intellectual disabilities (ID) through trainings for medical students and health professionals, community-based health assessments for individuals with ID, data collection and analysis including longitudinal health outcomes for people with ID, comprehensive information and referral, and a public awareness campaign. The project will use innovative strategies and cutting edge technology to help reduce some of the most serious health disparities people with intellectual and developmental disabilities face, and it will contribute to systems-change efforts in health care access.

“With cutting edge technology and a network of top notch partners, this project has the potential to uncover eye-opening information about the health of the millions of people with intellectual and developmental disabilities in this country. We are thrilled to be given this opportunity by the CDC to learn more about the health of this population and help change lives in the long run by informing policy and systems change at a national level,” said Peter V. Berns, CEO of The Arc.

In addition to the CDC, The Arc is pleased to work with several of our chapters with expertise in the arena, including The Arc of San Francisco, The Arc of New Jersey, and Achieva, along with Therap, the Association on University Centers on Disabilities, the American Association on Intellectual and Developmental Disabilities, the National Association of County and City Health Officials, Autism Speaks, and the National Down Syndrome Congress.

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The Arc Celebrates 22nd Anniversary of the Americans With Disabilities Act

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Washington, DC – Today, The Arc joins with advocates across the country to celebrate the 22nd anniversary of the Americans with Disabilities Act (ADA). This landmark civil rights law was created to eliminate discrimination against people based on their disabilities. Members of The Arc’s national staff joined administration officials, including Senior Advisor to the President Valerie B. Jarrett, at the White House this morning to commemorate the signing of this historic law.

“As we celebrate the anniversary of the Americans with Disabilities Act, we must acknowledge the millions of advocates who made this law possible. Members of The Arc have spent the last 60 years working to promote full inclusion and equality for individuals with intellectual and developmental disabilities, but our work is far from over. Today, we look back on the many accomplishments of the last 22 years as we continue to work toward a future free of discrimination,” said Peter Berns, CEO of The Arc.

The ADA protects the civil rights of individuals with disabilities in employment, state and local government services, privately operated public accommodations (hotels, restaurants, stores, museums, etc.), transportation, and telecommunications. A person with a disability, as defined by the ADA Amendments Act of 2008, is someone who has a physical or mental impairment that substantially limits one or more major bodily functions or major life activities, a person who has a history or record of such impairment, or a person who is regarded as having an impairment.

The ADA’s integration mandate has helped many individuals with intellectual and developmental disabilities (I/DD) leave institutions and move to community based settings. However, there are still many individuals living in nursing homes and other types of institutional settings who could and who want to live in more integrated settings.

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The Arc Commends Governor Jack Markell’s New Initiative to Employ Individuals With Disabilities

/in /by The Arc

Washington, DC – This week, Delaware Governor Jack Markell was named Chair of the National Governors Association (NGA). Shortly after his appointment became official, the Governor announced that during his year-long term, his Chair’s initiative will be increasing employment among individuals with disabilities. The Arc fully supports Governor Markell’s efforts and applauds him for his work on behalf of individuals with intellectual and developmental disabilities (I/DD) and other disabilities.

“Individuals with intellectual and developmental disabilities are capable of excelling in the workforce and giving back to the communities in which they live. We commend Governor Markell for bringing national attention to the employment challenges facing individuals with disabilities and for working to create employment opportunities for them through innovative public-private partnerships. The Arc has long recognized the need for employment opportunities for individuals with disabilities, and we look forward to supporting the Governor’s initiative,” said Peter Berns, CEO of The Arc.

A major emphasis of the Governor’s initiative will be on people who have significant intellectual and developmental disabilities and may require supports like job coaches and personal attendants in order to live and work in the community. Throughout the year he will convene governors, businesses, disability leaders, and other thought leaders. The initiative will focus on educating public and private sector employers and supporting state governments to join with business partners to develop and build out blueprints to promote the hiring and retention of people with disabilities.

The Department of Labor released statistics in 2011 stating that 17.8 percent of Americans with a disability are employed, compared to 63.6 percent of those with no disability. The Arc’s own research suggests that the employment picture for people with I/DD may be even bleaker. In 2010, The Arc conducted and received over 5,000 responses to a national online survey called the Family and Individual Needs for Disability Supports, or FINDS Survey, to obtain perceptions of people with I/DD and their families on a range of life-span issues. Only 15% of FINDS survey respondents reported that their family member with I/DD was employed.

“The bottom line is that there are so many people with disabilities who have the time, talent and desire to make meaningful contributions to interested employers,” Governor Markell said. “More companies are recognizing that creating greater economic opportunity for these workers improves their own bottom line as well. It doesn’t matter whether you were born with additional challenges to face or – in the case of our wounded veterans for example – acquired them later in life. What matters is what you have to offer.”

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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 I/DD. 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 I/DD who would have benefited from the expansion could be left behind. Medicaid is an incredibly important lifeline for people with I/DD, 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

/in /by The Arc

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 I/DD, 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 I/DD 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.