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The Arc Receives Award From Centers for Disease Control for Cutting Edge HealthMeet Project

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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 (IDD) 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

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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 (IDD) 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 IDD 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 IDD and their families on a range of life-span issues. Only 15% of FINDS survey respondents reported that their family member with IDD 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

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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

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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. Learn more at www.autismnow.org.

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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 (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

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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.