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The Arc Endorses the Declaration on the Rights of People With Cognitive Disabilities to Technology and Information Access

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People with cognitive disabilities have an equal right to technology and information access. A formal declaration on this right was officially unveiled at the Thirteenth Annual Coleman Institute National Conference on Cognitive Disability and Technology, held October 2, 2013, in Broomfield, Colorado. The Rights of People with Cognitive Disabilities to Technology and Information Access is a statement of principles: the rights of ALL people to inclusion and choice in relation to technology and information access.

“Cognitive disabilities” include intellectual disability, autism spectrum disorders, severe and persistent mental illness, brain injury, stroke, Alzheimer’s disease and other dementias. People with cognitive disabilities are estimated to comprise over 60% of the world’s total population of people with disabilities. The vast majority of people with cognitive disabilities have limited or no access to comprehensible information and usable communications technologies.

“The formal declaration is being presented at a time when the pace of the digital age is accelerating rapidly. Access to technology and information access is essential for community and social participation, employment, education, health, and general communication. Advocates for people with cognitive disabilities may use this declaration to stimulate greater attention nationally and worldwide to the possibilities now at hand for people with cognitive disabilities through technology while promoting their rights as citizens to access to it,” said David Braddock, Professor of Psychiatry and Executive Director of The Coleman Institute on Cognitive Disabilities at the University of Colorado.

“Technology can expose individuals with intellectual and developmental disabilities as well as those with cognitive disabilities to a new world. The advantages of technology are something that every individual deserves to have equal access to, which is why The Arc supports the Declaration on the Rights of People with Cognitive Disabilities to Technology and Information Access. Technology can be particularly beneficial to individuals with disabilities as it can serve as a communication device, assist in education, and overall promote independence,” said Peter Berns, CEO of The Arc.

To read the complete declaration, and to personally endorse it, visit the Coleman Institute website.

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The Arc Launches New National Resource Center on Justice and Intellectual and Developmental Disabilities

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Office of Justice Programs SealWashington, DC – The Arc is pleased to announce it has been awarded a two-year grant for $400,000 by the U.S. Department of Justice, Bureau of Justice Assistance (BJA) to develop a national center on justice and intellectual and developmental disabilities (IDD). This is the first national effort of its kind to bring together both victim and offender issues involving people with IDD under one roof. According to the National Crime Victim Survey of 2010, the victimization rate is twice as high for individuals with disabilities as compared to those without disabilities. And we don’t have to look far for examples where law enforcement and people with IDD could have benefited from this kind of work, including the tragic death of Robert Ethan Saylor in Frederick, Maryland, who died earlier this year after three off-duty deputies attempted to remove him from a movie theater over a misunderstanding over a ticket.

The goal of this project is to create a national clearinghouse for research, information, evaluation, training and technical assistance for justice and disability professionals and other advocates that will build their capacity to better identify and meet the needs of people with IDD, whose disability often goes unrecognized, and who are overrepresented in the nation’s criminal justice system – both as victims and offenders.

“When individuals with IDD become involved in the criminal justice system as suspects or victims, they often face miscommunication, fear, confusion and prejudice. This new center will play a critical role in improving first response and communication between people with IDD and the justice system. No similar center on this topic exists, nor are there sufficient resources to address the gap in expertise in the field, and so this effort is long overdue,” said Peter Berns, CEO of The Arc.

The Arc will work closely with several other national partners within the criminal justice, legal and victim advocacy communities to research, analyze and replicate evidence-based solutions to the problems of injustice and victimization that have gone on for far too long within the IDD community. For example, people with IDD are often unable to report crimes or are not seen as credible witnesses. They are also vulnerable to becoming perpetrators of crime, including sex offenses, and used by other criminals to assist in law-breaking activities. And with many forms of mild IDD not being easily identifiable, justice personnel may not recognize that someone has a disability or know how to work effectively with the individual. Although organized training is available for criminal justice professionals on mental illness, few resources on IDD exist. Many law enforcement and other justice professionals do not know the difference between mental illness and IDD and often think they are synonymous.

“When our chapters work with their local law enforcement agencies, they hear time and time again that training is provided for mental health issues, yet that doesn’t encompass millions of people with IDD living in our communities. Through this grant, The Arc’s center will become a national focal point for the collection and dissemination of resources and serve as a bridge between the justice and disability communities,” said Berns.

The center will consist of a resource library, directories of expert witnesses, attorneys, forensic interviewers, and victim advocates, a database of relevant state laws, and hands-on technical assistance and training. Additionally, The Arc will create a Justice and IDD Certification program using training curriculum authored by Leigh Ann Davis, M.S.S.W., M.P.A., and hold five trainings around the country and web-based trainings.

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The Arc Reacts to Latest Stumble in National Effort to Solve Long-Term Care Crisis

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Washington, DC – Last week, the Commission on Long Term-Care voted on recommendations that will be included in a final report to Congress, with the goal of renewing a national effort to address the issues and challenges of accessing affordable long term services and supports faced by millions of Americans. The Arc commends the Commission on Long-Term Care for bringing attention to the serious crisis confronting our nation. Unfortunately, given the unrealistic time frame and lack of adequate resources, the Commission was not able to reach consensus on the most critical issue facing our country – financing accessible, affordable long term services and supports for those who need them when they need them.

“Many family caregivers have told me that their biggest fear is what will happen with their adult son or daughter with a disability after they die. Our research shows that nearly two-thirds of families don’t have a plan and they need help. We must act now to find solutions so that seniors and people with disabilities can remain in their communities and obtain vital and affordable home and community based services. Unfortunately, this latest effort failed to produce hope for families that include people with disabilities,” said Peter Berns, CEO of The Arc.

The Commission on Long-Term Care was established under the American Taxpayer Relief Act of 2012, signed into law January 2, 2013. The Commission was given just six months to develop a plan to address this crisis which has plagued our country for decades, and provide Congress with recommendations for legislative action.

“We understand that the Commissioners did not have enough time to fully address the complexities of ensuring long-term services and supports for those who need them. However, the importance of long term services and supports for people with intellectual and developmental disabilities cannot be overstated. It is now imperative that Congress act responsibly to address the pending crisis in long term services and supports for seniors and people with disabilities. The ball is in their court, and they have a responsibility to all of us to act,” added Berns.

The Arc believes that the principles of addressing the needs of people of all ages, helping people avoid lifetime impoverishment, ensuring that all working people can be covered, and focusing on community based services should be the basis of any reform.

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The Arc Awarded New Federal Grant to Educate Medical Professionals on Fetal Alcohol Spectrum Disorders

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Washington, DC – Building on The Arc’s long history working on Fetal Alcohol Spectrum Disorder (FASD) prevention and providing services to people with FASD, The Arc is pleased to announce it has been awarded a more than $1.3 million cooperative agreement over three years from the federal Health Resources and Services Administration’s (HRSA) Maternal and Child Health Bureau to increase the education of medical professionals regarding alcohol-exposed pregnancy and change clinical practice to better prevent FASD.

Drinking while pregnant can cause FASD, a preventable form of intellectual and developmental disability (IDD). Yet according to HRSA, 22.5% of pregnant women drink alcohol and many health care providers advise women that light drinking is safe. Providers need education on drinking during pregnancy, screening tools and interventions that can prevent FASD. The Arc, with the support of its national partners, will develop trainings including webinars, peer learning communities, and continuing medical education (CME) courses for allied health professionals, and create and disseminate culturally appropriate materials.

“This grant is a tremendous opportunity for The Arc to make a real difference in how the medical community views the risk of drinking while pregnant. Working with key players in the medical sector, we expect to dramatically change the conversations happening in doctors’ offices,” said Peter Berns, CEO of The Arc.

The Arc will work with The Association of Reproductive Health Professionals, The National Hispanic Medical Association, The Association on American Indian Affairs, and the National Association of City and County Health Officials to carry out this grant. The goal of this project is to increase provider knowledge of the risks alcohol poses during pregnancy and encourage prevention by:

  • Conducting a comprehensive needs assessment on the educational needs of providers;
  • Developing an educational plan for increasing provider knowledge of FASD prevention;
  • Working with national professional associations to create culturally and linguistically appropriate educational materials for a range of health care providers;
  • Disseminating materials to providers via national organizations’ networks and other channels; and
  • Assessing the impact of educational efforts on provider knowledge, practice, and prevention.

This award to The Arc comes at a particularly opportune time to capitalize on important changes in our health care system. Thanks to the Affordable Care Act, starting in 2014, all health insurance marketplace plans and many other plans must cover select preventive services, including alcohol misuse screening and counseling, without charging a copayment or coinsurance when these services are delivered by a network provider. According to guidance from the Department of Health and Human Services, alcohol misuse includes any alcohol consumption by women who are pregnant or trying to get pregnant.

And starting in October of 2014, the new edition of the International Classification of Diseases (ICD), the standard diagnostic tool for epidemiology, health management, and clinical purposes, will go into effect. For the first time, there will be specific codes for FASD prevention and intervention. These welcome and long sought additions to the ICD are expected to yield greater interest in prenatal alcohol exposure by medical professionals and encourage clinical interventions by creating billing codes for such services.

The project will be 100% funded by this cooperative agreement, funded by HRSA, grant # U1HMC26371.

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The Arc Welcomes New Leader in Arizona

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This month, The Arc of Arizona welcomed Jon Meyers as their new Executive Director. His 25 years of executive leadership and development work in the philanthropy, higher education, and social service fields will serve as tremendous assets to The Arc of Arizona as they begin to move into a new era.

“Jon Meyers is well suited to take over as Executive Director of The Arc of Arizona. His dedication to professional excellence paired with his experience working with children on the autism spectrum make him an ideal candidate to lead our state chapter in Arizona. Under his leadership, our chapter network in Arizona is sure to thrive, and I know that individuals with disabilities in communities across the state will benefit from his leadership,” said Peter Berns, CEO of The Arc.

The Arc of Arizona is a 501c3 agency. It currently has over 1000 members with 10 local chapters. The Arc of Arizona supports itself through fundraising efforts, private donations and program contracts with the Division of Developmental Disabilities. The volunteers and staff who comprise The Arc of Arizona are individuals with intellectual and developmental disabilities (IDD), their parents, friends, educators and professionals in the human services field. Meyers sees new opportunities on the horizon to build additional support for The Arc’s work in Arizona.

“In the months and years to come The Arc of Arizona will be integral to expanding service and educational offerings to people with IDD and those who love and care for them. We want to be at the forefront of this movement to make all Arizonans aware of the contributions made by people with intellectual or developmental disabilities to our society and our lives,” said Meyers on his vision for the organization.

Meyers previously served as Executive Director of The Arts Council of the North Valley in Anthem, Arizona, The Leukemia and Lymphoma Society in Phoenix, Arizona, and as Senior Development Officer/Major Gifts Officer for Arizona State University/ASU Foundation. His most important role is that of father and husband. As parent of three boys and former school teacher, he has experienced firsthand the challenges – and the joys – of working with people with IDD.

“For nearly 50 years, The Arc has been helping Arizonans with IDD, and their loved ones, lead full and happy lives. I am privileged to serve this organization at a time when the challenges are great but the opportunities are even greater. We have much work ahead of us to ensure that all Arizonans with disabilities are able to lead meaningful lives in the community. With the commitment of our Board, staff, and volunteers — as well as the compassion and generosity of our friends and neighbors across the state — The Arc of Arizona will continue to be the leading voice advocating for individuals with disabilities,” said Meyers on his new role with The Arc of Arizona.

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The Arc’s Recycling Initiative Expands With Help of the Alcoa Foundation

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Through funding from the Alcoa Foundation, The Arc will be supporting three additional chapters in their recycling initiatives. Each chapter’s program supports employment and skill development for individuals with intellectual and developmental disabilities (IDD) in collaboration with local Alcoa facilities.

“We could not be more excited to be expanding our recycling initiative, and are grateful to The Alcoa Foundation for their generous support. Through our recycling initiatives we have not only been able to support individuals with IDD who want to work, but have been able to provide essential training to ensure they can grow in their current fields. We look forward to supporting important recycling programs across the country while showing that individuals with disabilities have a lot to offer in these important cutting edge jobs,” said Jonathan Lucus, Managing Director, Employment & Transition Services for The Arc.

The goal of The Arc’s recycling initiative , in collaboration with local Alcoa facilities, is to create employment and skills development opportunities for individuals with IDD and to further the importance of recycling as a means for environmental sustainability in local communities. The initiatives range from textile recycling to bottle, to collection and recycling of shipping waste such as cardboard and plastic to a bottle and can return program. The new sites for The Arc’s Recycling Initiative and their grant amounts are listed below:

  • The Arc Knox County – $25,000
  • The Arc of Montgomery – $ 20,000
  • Ulster Greene – $25,000
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The Arc Reacts to New Book on Pregnancy Risks, Including Drinking Alcohol: “Why Risk It?”

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The news media is paying attention to a soon-to-be released book, “Expecting Better: Why the Conventional Pregnancy Wisdom is Wrong—and What You Really Need to Know,” by Emily Oster, an associate professor of economics at the Booth School of Business at the University of Chicago. As the leading organization supporting people with Fetal Alcohol Spectrum Disorder (FASD), The Arc is pushing back on the claims put forward in this book that could lead women to believe that light drinking during pregnancy is statistically safe. Oster is not a medical professional, and the medical community has a clear position on this issue – there is no safe amount of alcohol that can be consumed while pregnant.

“Why risk it? That’s the question we should be encouraging women to ask themselves when they consider drinking alcohol while pregnant. According to the U.S. Surgeon General, the nation’s top doctor, there is no absolute safe amount of alcohol that a woman can drink during pregnancy without risk of harming her unborn baby. FASD is 100% preventable, yet books like this one give the irresponsible impression that the odds of a drink here or there affecting your child aren’t high enough for women to choose to abstain from drinking alcohol while pregnant,” said Peter Berns, CEO of The Arc.

What is FASD?

FASD is an umbrella term describing 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. It is identified by abnormal facial features, central nervous system problems and slowness of growth, and occurs when pregnant women drink alcohol and pass the alcohol along to their unborn babies through the blood stream. FASD can cause physical and mental disabilities of varying levels of severity, including intellectual disability. It is often a “hidden disability” that is not easily recognizable, making it difficult to provide affected individuals and their families the supports they desperately need.

What are other disorders linked to drinking while pregnant?

FASD covers other terms such as: FAS (Fetal Alcohol Syndrome), ARND (Alcohol-Related Neurodevelopmental Disorder), ARBD (Alcohol-Related Birth Defects) and FAE (Fetal Alcohol Effects). FAS is the most identifiable and serious disability under the FASD umbrella, although it only accounts for approximately 25% of all alcohol-related effects. FAE is a term often used to describe someone whose condition does not meet the full criteria for an FAS diagnosis.

The data affirms the national recommendation to not drink while pregnant

The CDC doesn’t know exactly how many people are affected, however their studies have shown that between 0.2 to 2.0 cases of FAS occur for every 1,000 live births in the U.S. (this statistic focuses on FAS only, not FASD).

When the number of people with FASD are included in that data, the National Organization on Fetal Alcohol Syndrome states that approximately one in 100 children are affected by FAS or FASD. This is based on a study from the University of Washington that refer to this as a conservative rate, affirming the belief of many health professionals that fetal alcohol exposure is a serious problem in the United States.

According to the federal Substance Abuse and Mental Health Administration, for one individual with FAS, the most severe form of FASD, the lifetime cost of care is estimated at $2 million. For our nation as a whole, the cost may be as high as $6 billion each year.

While there is no safe time period in a pregnancy to drink, recent research shows that between weeks six and twelve of a pregnancy, a baby is particularly susceptible to harm from drinking alcohol, showing an increase in certain facial features of FAS, in addition to lower birth weight and length.

“What you don’t know can, in fact, hurt you and your baby – for a lifetime. There is no safe amount you can drink and still protect your child’s health, and dissecting data to prove otherwise will only increase the number of kids affected. This is a societal problem that is within our power to tackle, as long as we carefully listen to all the facts,” said Berns.

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The Arc Applauds National Governors Association for Work to Promote Employing People With Disabilities

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At the recent National Governors Association (NGA) meeting, outgoing NGA Chair Governor Jack Markell (DE) wrapped up his year-long Chair’s Initiative, “A Better Bottom Line: Employing People with Disabilities.” The initiative focused on the employment challenges that affect individuals with intellectual and other significant disabilities and the role that both state government and business can play in facilitating and advancing opportunities for employment. At the NGA meeting, Governor Markell released a final Blueprint for Governors summarizing the initiative’s activities, findings, and recommendations.

“Governor Markell’s initiative has brought attention to an issue that is too often ignored in our society – what people with disabilities can do in the workplace. People with disabilities, including people with intellectual and developmental disabilities, are an integral part of our economy. The Arc is thrilled with Governor Markell’s leadership to raise the profile of this important issue to the governors across the country. Chapters of The Arc, found in 700 communities across the country, are ready to support states that make employment for people with disabilities a priority,” said Peter Berns, CEO of The Arc.

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Disability Advocates and Professionals to Descend on Bellevue for The Arc’s Annual Convention

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Next week, The Arc’s National Convention will kick off in Bellevue, Washington with more than 500 disability advocates, professionals, and people with intellectual and developmental disabilities (IDD) coming together to learn, forge connections, and energize the disability movement. The theme, Achieving Momentum, captures what The Arc is all about – empowering people with IDD to achieve their dreams by continuously moving forward on issues that help them achieve independence and be included in society.

“The Arc’s convention is a once a year chance to bring our network of 700 chapters and their members and professionals together for a unique experience. This year, we have a wonderful array of sessions focused on family relationships, technology, and advocacy, and plenty of opportunities for attendees to learn from each other and have some fun,” said Peter Berns, CEO of The Arc.

This three day event, which will take place from August 3-5, will include:

  • a keynote address by award-winning author Buzz Bissinger, whose recent book Father’s Day chronicles his relationship with son Zach, who has multiple disabilities;
  • honoring Illinois Governor Pat Quinn with our Advocacy Matters award for his work to offer people with IDD the opportunity to live in a community of their choice;
  • a special visit via video by Andrew Jenks, creator of MTV’s World of Jenks, a documentary style show that features a young man with autism as he transitions from high school to the world of work, dating, and being an adult. Jenks is this year’s recipient of The Arc’s Image and Inclusion Award for positive portrayal of people with IDD in the media;
  • a technology emphasis with guest speakers from Verizon, a sponsor of this year’s convention, and Microsoft, and the opportunity for attendees to have a hands-on technology experience at the Microsoft store, in Bellevue Square Mall, during a private class just for attendees ; and
  • Red Hot on the Red Carpet and The Arc & Sprout National Film Festival. We’re rolling out the red carpet again as a lead-in to our always popular film festival featuring shorts for, by and about people with IDD.

“We are excited to serve as the local host committee for The Arc’s national convention. This marks the first time this national event has returned to our state since 1956. The Arc of Washington State is proud to have been instrumental in establishing the national organization over 60 years ago, and we look forward to many more years of growth and positive change that such a strong national partnership brings,” said Sue Elliott, Executive Director of The Arc of Washington State.

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The Arc Applauds Stay of Execution of Warren Hill, Vows to Continue Legal Advocacy Efforts

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Washington, DC – This evening, the state of Georgia was scheduled to execute Warren Hill, a man who experts unanimously determined has an intellectual disability, which should have ruled out the death penalty per a 2002 Supreme Court ruling, Atkins v. Virginia. But this afternoon, a Fulton County, Georgia judge stayed the execution and scheduled a hearing for this Thursday to hear the defense team’s challenge of the constitutionality of a new state law that shields the identities of the lethal injection drug’s manufacturer and physician who prescribes it.

“Today, Georgia came too close to ignoring experts and crossing the line drawn by a more than decade-old Supreme Court ruling protecting people with intellectual disability in our justice system. While we breathe a sigh of relief for now, this battle is far from over for Mr. Hill and many more people with disabilities who may be at risk of unjust punishment. This stay of execution was granted on another state legal matter in the case, not Mr. Hill’s disability. The Arc is committed to fighting for the rights of people with intellectual and developmental disabilities, and we will continue our legal advocacy work to make sure that the U.S. Supreme Court ruling on this issue is followed in jurisdictions across the country,” said Peter Berns, CEO of The Arc.

Hill’s legal team had also appealed to the U.S. Supreme Court to step in to stop the execution on the grounds of the Atkins v. Virginia decision, while simultaneously pursuing the state law issue. The U.S. Supreme Court has not responded to this request yet.

The Arc, the nation’s largest civil rights organization for people with intellectual and developmental disabilities (IDD), has been involved in this case filing an amicus brief before the Supreme Court in earlier proceedings, and supporting Hill’s defense team through letters to the Georgia Board of Pardons and Paroles and the District Attorney urging his sentence be commuted to life without parole. In this most recent effort, The Arc called for the Supreme Court to step in and issue a stay to prevent the state of Georgia from executing Hill.

In 2002, the Supreme Court ruled in the Atkins v. Virginia case that executing inmates with intellectual disability (ID) is unconstitutional. But in Georgia, ID must be proven “beyond a reasonable doubt” by the defendant, the strictest standard in the country.