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The Arc Responds to Warren Hill’s Appeal Denial by the Supreme Court

/in , /by The Arc

The Arc released the following statement following news that the United States Supreme Court declined to consider Warren Hill’s appeal to halt his execution because he has intellectual disability (ID). Hill’s lawyers filed the petition directly to the Supreme Court, stating that they had evidence proving Hill has ID. In 2002, the Supreme Court ruled in the Atkins v. Virginia case that executing inmates with ID is unconstitutional. However, in Georgia (where Hill is on trial), ID must be proven by the defendant “beyond a reasonable doubt,” the strictest standard in the country.

“We are extremely disappointed that the Supreme Court has chosen not to accept Warren Hill’s appeal. The high court was the last chance for a man unjustly sentenced to death, and their inaction will cost Mr. Hill his life. They failed to order a halt to the execution despite their prior ruling in Atkins v. Virginia that established that it is unconstitutional to execute an inmate with intellectual disability,” said Peter V. Berns, CEO of The Arc.

The Arc, the nation’s largest civil rights organization for people with intellectual and developmental disabilities (IDD), has been involved in this case through 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.

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Get the Facts: Another Media Hit on Social Security Disability Programs

/in /by The Arc

Sunday night, CBS’ 60 Minutes aired a piece they dubbed “Disability, USA” in which they portrayed the Social Security disability programs as exploding over the last few years and in danger of running out of funds. We’re deeply concerned that to press the panic button on the funding stream for Social Security Disability Insurance (SSDI) is irresponsible, and we’re saddened to see 60 Minutes join other national media in perpetrating myths and inaccuracies.

Members of The Arc and the individuals and families we serve know Social Security is an essential lifeline that keeps millions of Americans with significant disabilities from homelessness and deep poverty. About 1 in 5 Americans live with a disability, and this report failed to show the importance these programs play in many of their lives.

It’s disappointing to see reporting that puts people who rely on these programs to survive on edge, when the truth is much less sensational but also much more interesting. Here are three important facts to keep in mind:

1. It’s incredibly difficult to qualify for Social Security disability benefits. The Social Security Act’s disability standard is one of the strictest in the developed world. Fewer than four in ten applicants are approved, even after all stages of appeal. Many are terminally ill: 1 in 5 male SSDI beneficiaries and nearly 1 in 6 female SSDI beneficiaries die within 5 years of receiving benefits. Due to the complexity of the process, many people who appeal seek help from an attorney or representative who is paid by the claimant out of past-due benefits – not out of the Disability Insurance Trust Fund, as suggested by 60 Minutes. As noted by the Consortium for Citizens with Disabilities, the fee process for Social Security claims is highly regulated and the average fee in most cases is less than $3,000.

2. For those of us paying attention, the growth in Social Security Disability Insurance (SSDI) is not surprising – in fact, it has been projected since 1994. According to Social Security’s Chief Actuary, the growth in SSDI (from 1980 to 2010) is mostly the result of several factors: substantial growth in the U.S. population; the baby boomers aging into their high-disability years; and women entering the workforce in large numbers in the 1970s and 1980s so that more are now “insured” for SSDI based on their own prior contributions.

3. The DI trust fund will need to be replenished in 2016 – but this is not a new development, or an unprecedented one. Since Social Security was enacted, Congress has “reallocated” payroll tax revenues between the OASI (retirement) and DI (disability) trust funds – about equally in both directions – some 11 times to account for demographic shifts. In 1994, the last time such reallocation occurred, SSA actuaries accurately projected that similar action would next be required in 2016.

The 60 Minutes program also reported on fraud in the system that occurred in West Virginia and Kentucky. The Social Security Administration – and advocacy organizations like The Arc – takes fraud very seriously because it harms the millions of honest people who rely on the program as a lifeline to basic necessities, and it hurts the integrity of the program. Anytime you suspect fraud is occurring, you can contact the SSA hotline at 1-800-269-0271. We all want to root out the bad actors and focus the program on those that need it most – people with disabilities who without the SSA, would be homeless, hungry, and cut off from access to life saving medicines and services. But it’s also important to keep in mind that most experts agree that fraud is very rare. Former SSA Commissioner Michael J. Astrue, appointed by President George W. Bush, estimates that fraud constitutes less than 1 percent of all applicants.

Finally, we believe that resources are vital to ensuring that SSA can properly administer its disability programs. The continued impact of underfunding has had serious implications, including limiting the agency’s ability to perform vital watchdog functions. And the current government shutdown is having even more dramatic effects.

Here are some additional resources for learning more about the facts on the Social Security disability programs:

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Reject Piecemeal End to the Government Shutdown and Protect People With Disabilities

/in /by The Arc

Washington, DC – The Arc calls on Congress to reject the piecemeal approach to ending the government shutdown and urges lawmakers to put an end to the Federal Government shutdown immediately for all Americans.

“People with intellectual and developmental disabilities rely on numerous federal government programs to live, learn, and work in their communities. We cannot allow Congress to cherry pick which federal programs continue operations based on arbitrary criteria. We are all in this together,” said Marty Ford, Senior Executive Officer, Public Policy, The Arc. “Congress must adopt appropriations legislation now that does not lock in the harmful, low spending levels from the sequester or defund or delay the Affordable Care Act.”

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The Declaration: Just Do One Thing

/in /by Ann Cameron Williams

For the last few days, I’ve been at the Coleman Institute Conference on Technology for People with Cognitive Disabilities near Boulder, Colorado. I’m proud that The Arc helped to launch the Declaration of Rights for People with Cognitive Disabilities to Technology and Information Access, a stunning Jeffersonian document written by a small group of dedicated thought leaders in technology and cognitive disabilities. This document, which is available in several versions to ensure equal access to diverse readers at https://www.colemaninstitute.org/declaration, firmly reminds the United States and the world that communications platforms are public domains and therefore need to be accessible for all.

Why is this so important? Imagine, if you will, being unable to use your cellphone, computer and internet, ATMs and electronic banking, online job application forms, online insurance, health information, emergency information, weather, local community information… and anything else you access through electronic or wireless means. Imagine that while you might have the equipment, the languages and instructions that are used in all of these platforms are written in a confusing language that you don’t understand, maybe in words that are too small or which you can’t see clearly and which demand speed in processing that are too fast for you to react to. Now imagine (this is the easy part) that these platforms are how the world around you communicates with and operates upon. But because the platforms upon which the communications are built are not written into your language and communication needs, there is no way for you to move in this social space. You are, as a result, wholly dependent on someone else to help you translate the information you need to know. This is largely the current reality for people with cognitive disabilities in terms of technology and information.

People with cognitive disabilities include those with intellectual disabilities, Alzheimer’s, traumatic brain injury, some psychiatric disorders. While these impairments are the reality for this population, it does not mean that they should by virtue of their impairment be forever excluded from the public communications domain or marginalized as full citizens of this world. They deserve equal access to technology and information that support public communication and which have become a mainstay of social interaction. The Declaration states without apology that technology and information must be accessible to all, not just to those who can read or process or be physically adept in seeing, hearing, and typing to interact with this system. There is a sense of urgency to this because cloud-based communication platforms are solidifying rapidly, and if we don’t take action now, people with diverse communication needs risk being forever excluded.

And we can’t let that happen.

The Arc has been working on this Declaration with other thought leaders in cognitive disabilities and technology to ensure that the needs of people with intellectual and developmental disabilities are included in this new social movement. The Arc and now 57 organizations and even more individuals have formally endorsed the Declaration. I urge each of you to go online and read it yourself. The more people sign on, the more visibility, awareness, and power this movement will gain to advance accessibility in the new cloud based communications and information field. Here’s one more thing: Earlier this week, our small group of thought leaders went around the room and promised to do at least one thing to advance this social movement. As you read this, I ask you to do one thing as well to help us advance this important cause. Perhaps you will review the Declaration and endorse it, or perhaps to send this to your personal networks. Or maybe you can print it off and hang it in your office or send it to your child’s teacher or bring it to your local wireless communications provider. Maybe you’ll write your own blog, post it on Facebook, tweet it out, talk about it in a staff meeting, or simply think about ways to help while you tend your late summer garden… the list of possibilities of what you can do is endless, just as the possibilities of how this modest document might change the world for people with cognitive disabilities.

Do one thing.

Help us change the world.

We are The Arc.

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

/in /by The Arc

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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Happy 40th Birthday, Section 504!

/in /by The Arc

In 1973, Congress passed the very first civil rights protection for people with disabilities. Section 504 of the Rehabilitation Act prohibits discrimination based on disability by any entity that receives federal funds. Senator Hubert Humphrey was a champion of civil rights for people with disabilities. He said, “[T]he time has come to firmly establish the right of disabled Americans to dignity and self-respect as equal and contributing members of society and to end the virtual isolation of millions of children and adults.”

As with any law, regulations needed to be written to define who a person with a disability was and what constituted discrimination. There was much controversy surrounding Section 504 and getting the regulations published was a battle that lasted for several years. Disability advocates had to file a lawsuit to get the government to finalize the regulations. Unfortunately, the court did not set a date by which the regulations had to be published. The disability community grew more frustrated. A coalition was formed to lead an effort to get regulations out. The coalition was called the American Coalition of Citizens with Disabilities.

The federal government set up a task force to study the regulations, but failed to include any individuals with disabilities among its members. The disability community feared that the rules were being watered down significantly. Rather than wait for weak regulations to come out and then submit comments, the community borrowed from the African American Civil Rights movement and organized a sit-in at the San Francisco office of what was then the Department of Health, Education and Welfare (HEW). The San Francisco sit-in lasted for 28 days! A refrain from those days was, “We can’t even get on the back of the bus.”

A Congressional hearing was held at the San Francisco HEW office where leaders of the disability rights movement (including Judy Heumann and Ed Roberts) gave compelling testimony about the discrimination each of them faced on a daily basis. A smaller group of disability rights advocates traveled to Washington and demonstrated in front of the HEW Secretary’s home and the church where the President was worshiping. Finally, on April 28, 1977 the Secretary of HEW signed the regulations.

Today, every federal agency has Section 504 regulations concerning the programs that receive funds from that particular agency. And today, discrimination is prohibited on the basis of disability in education, employment, state programs, health care facilities, airports, public libraries, public parks, local government buildings and programs; the list goes on and on.

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The Arc Maryland Responds to Governor’s Executive Order to Establish Commission

/in , /by The Arc

Governor O’Malley Forms New Commission for Effective Community Inclusion of Individuals with Intellectual and Developmental Disabilities

ANNAPOLIS, Md. — The Arc Maryland responds to Governor O’Malley’s Executive Order to establish the Maryland Commission for Effective Community Inclusion of Individuals with Intellectual and Developmental Disabilities. The Executive Order was created as a response to the tragic death of Frederick County resident Ethan Saylor, who had Down syndrome, in an effort to improve the training of law enforcement, paramedics and other first responders to better respond to people with intellectual and/or developmental disabilities.

In a press statement issued on February 21, The Arc Maryland responded to the tragic death of Robert Ethan Saylor: “Sadly, this tragedy could have been prevented…with proper training these officers would have realized there was a better way to work with Robert, as opposed to simply using force – an extreme and unnecessary reaction. This is a moment for us not only to mourn, but we must also learn from this tragedy and encourage proper training in our police departments,” said Kate Fialkowski, Executive Director, The Arc Maryland.

Individuals with intellectual and/or developmental disabilities (includes children, youth and adults with disabilities such as autism, cerebral palsy and Down syndrome) represent 3% of the population living in our communities as valuable contributing citizens. Individuals with intellectual and/or developmental disabilities (IDD) are disproportionately victimized and disproportionately suspected of criminal activity—7 times more likely to come in contact with law enforcement than the general population. Individuals with IDD often have co-occurring medical conditions such as neurological, cardiac, or respiratory conditions that make them more vulnerable in stress situations. The use of prone restraints – which is associated with increased risk of asphyxia and aspiration – can result in fatality. (National Review of Restraint Related Deaths of Children and Adults with Disabilities: The Lethal Consequences of Restraint, 2011).

Carol Fried, President of The Arc Maryland said: “It’s our collective responsibility as a community to understand the unique gifts of our fellow community members, but also to ensure that our protective service systems are savvy in ensuring safe treatment of a vulnerable population.”

A comprehensive approach is necessary and The Arc Maryland applauds Governor O’Malley for establishing this Commission. It is critical that our state develops policies and practices for law enforcement and first responders, that there should be a coordinated and comprehensive strategy for response, and all first responders should have appropriate training to effectively respond to individuals with IDD in a variety of public safety situations.

In its continuing efforts to build awareness and improve community inclusion, The Arc Maryland is scheduled to conduct an introductory training entitled “Law Enforcement Response to Developmental Disabilities” at the Governor’s Fall Criminal Justice Conference on October 10, 2013. In an “Ask Me” format, individuals with developmental disabilities will lead this training. “The Arc has a long history of criminal justice and first responder training on a national level. We’re happy to contribute our extensive experience in any way that can benefit the state and individuals with intellectual and developmental disabilities and their families,” said Ms. Fialkowski.

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

/in , /by The Arc

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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Some Children With IDD at Greater Risk From Flu

/in /by The Arc

The Centers for Disease Control and Prevention (CDC) just published a report on the results of an on-line study they did during the 2011-2012 influenza season regarding vaccination rates for children with neurologic and neurodevelopmental conditions. Shockingly, the report indicated that only HALF of children surveyed were vaccinated or had an appointment to be vaccinated and out of those children who indicated they had an intellectual disability it was only slightly better at 52%. Numbers like this are alarming due to when you consider the 2009 flu outbreak in which 336 children died. Of those, 146 were children with neurologic or neurodevelopmental conditions (76% indicating they had an intellectual disability).

The majority of families rely and trust their physician to provide them with information, expertise and advice on what is best for their child to keep them healthy. However, the study also found that even after this outbreak occurred many physicians still do not rate children with an intellectual disability as being at a high risk and needing the vaccination.

According to the CDC bulletin a child with an intellectual or developmental disability that requires special needs is at a higher risk than others due to the fact that they are more susceptible to developing complications and infections from the flu virus. These complications can include pneumonia, bronchitis, and can also increase the effects of already current chronic health problems. These complications can lead to hospitalization and in severe cases death.

While every parent has the right to choose whether to get their child vaccinated or not, studies like this will help to increase awareness of prevention and knowledge of parents and physicians to help them to make more informed decisions.

As fall rolls in and the flu season quickly approaches you can visit the HealthMap Vaccine Finder if you need help finding a location in your area to get vaccinated.

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

/in /by The Arc

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.