The Arc Responds to New York Times Column on Children’s SSI Program

Washington, DC – In response to The New York Times’ Nicholas Kristof’s December 7 op-ed, “Profiting from a Child’s Illiteracy”, The Arc released the following statement:

“Mr. Kristof’s take on how to break the cycle of poverty completely misses the mark.  Our nation doesn’t have to choose between providing two essential supports for low-income children with significant disabilities:  early childhood programs and Supplemental Security Income, a lifeline. We must do both.  Children with severe disabilities must have access to robust, timely supports to help make the most of their early development, while at the same time, many who are low-income also need Supplemental Security Income to ensure a quality of life that isn’t crushed by economic circumstances. If the Supplemental Security Income lifeline is slashed thanks to articles like this one, it’s those most in need – the children with significant disabilities and their families, who face unimaginable day in and day out financial and personal struggles – who will suffer,” said Peter V. Berns, CEO of The Arc.

Disability Advocates from Across the Globe Share the Stage at The Arc’s National Convention and International Forum

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.

The Arc Reacts to The National Council on Disability’s Disturbing Report on the Rights of Parents with Disabilities

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.

Turbulence for People with Disabilities – What The Arc is Doing to Make Air Travel More Accessible to People with Disabilities

Cameron and Nancy

Cameron is on the autism spectrum and was completely non-verbal until a Wings for Autism event at Logan Airport where he said “airplane” while sitting on the plane. That was the first word that he had ever spoken at 5 years old. His mother Nancy reassured him with “yes Cameron, you are on an airplane.” Nancy says: “It is a moment I will never forget and I will always be grateful to the Wings for Autism program for that.”

Recent headlines about people with disabilities facing difficulties while traveling are troubling – just this week, the Vanderhorst family from Bakersfield, CA was not allowed to board an American Airlines flight home from visiting family on the East Coast, after they claim a pilot discriminated against their son Bede, who has Down syndrome. Stories like this one demonstrate the need for the airline industry to work with families to learn what to expect when people with intellectual and developmental disabilities (I/DD) travel.

One chapter of The Arc, The Charles River Center in Massachusetts, is leading the way in this type of education.  Working with Massachusetts Port Authority, JetBlue, and the Transportation Security Administration (TSA), The Charles River Center has created a new program called Wings for Autism.

Parents of children on the autism spectrum have a lot to take into consideration before making travel arrangements, from how their loved one will respond to the lights at the airport, their comfort level with airport security talking to or touching them, and how the noise on the plane will affect their child.

Wings for Autism sets up simulations of airport travel and security at airports across the country, giving families and airport and airline personnel an opportunity to do a test run for air travel.

At a recent simulation at Logan Airport in Boston, volunteers from JetBlue including flight attendants and pilots, staff from United Airlines, TSA officials, and ticket counter agents practiced the routine of air travel to prepare parents and children for what to expect when traveling.  The simulation required families to clear security, board the plane, fasten their seatbelts, and prepare for take-off.   For children who had issues with the various steps of the simulation, behavioral specialists were on hand to help parents and children work through the exercise.

While the program’s primary goal is to help children and parents, there is also an orientation process for TSA and airline staff.  This is the kind of education that appears to be desperately needed across airlines.  And The Arc is looking to expand this program, so that more families and airline and airport personnel can make flying a little smoother.

The Arc Launches eXplore eRecycling Sustainability Efforts

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

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

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.

Valerie Jarrett

Valerie Jarrett, Senior Advisor to the President, speaks at the ADA commemoration

“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.

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

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.”

An Open Letter to the Dr. Phil Show: People with Disabilities Have a Voice

Dear Dr. Phil,

What the disability community can do:

I am writing on behalf of the millions of people with intellectual and developmental disabilities (I/DD) in our nation and their loved ones that may have seen the April 13, 2012 Dr. Phil episode entitled “Deadly Consequences.” As the nation’s largest organization serving and advocating on behalf of people with I/DD, with a network of over 700 chapters across the country, we’ve received many outraged complaints about the content of this program, and after viewing it, I felt compelled to contact you to voice our concerns.

Frankly, we are appalled by the superficial coverage given to a subject that is, literally, a matter of life or death for Jeffrey, Janet and many other people with severe physical and cognitive disabilities. Your show did a great disservice to people with intellectual and developmental disabilities, as well as others who develop severe disabilities throughout their lifetimes as a consequence of traumatic brain injury, trauma experienced in serving our country, and the natural process of aging. Moreover, asking the audience to serve as Dr. Phil’s death panel and vote on whether Jeffrey’s and Janet’s lives are worth living was simply wrong. It is reassuring that the majority of people taking the online poll on your website reject the audience’s conclusion.

Annette Corriveau is entitled to free speech. But so are her son Jeffrey and daughter Janet. While they cannot physically speak for themselves, your program still could have provided for their voice to be heard. It should not be presumed that people who can’t speak are totally unable to communicate. Perhaps you could have interviewed the caregivers who interact with them on a day to day basis and could speak with authority about how Jeffrey and Janet communicate what they are feeling and about their quality of life. Often it is more a matter of our learning how to listen and to interpret the other cues that individuals with severe disabilities are able to provide. Your show focused only on Annette’s opinion, and while she is their mother, she admitted that she sees them only every other month and institutionalized her children many years ago.

You also could have interviewed other people with severe disabilities who, like Jeffrey and Janet, were written off as having no value and no abilities, yet who have succeeded in living in and in participating in their communities. Too often people with severe disabilities are dismissed, yet when given a chance and provided appropriate supports they can rise above the low expectations that others have for them. You might, for example, have interviewed other parents who fought to get their son or daughter out of an institution and have been amazed at how they have succeeded far beyond what anyone expected.

The show would also have been enriched by interviewing some of the many experts that have a deep understanding of individuals like Jeffrey and Janet and extensive experience in supporting people with severe disabilities to live meaningful lives in the community. There are families all across the nation fighting to get their sons and daughters with severe disabilities out of institutions and get them the home and community based services they need. Their perspective, and that of advocates in the disability rights movement, would have added balance to the show. Your viewers need to understand the history of oppression of people with severe disabilities in the country and how far we’ve come. The viewer has no idea of the dark history of the eugenics movement in the United States and globally because you didn’t show it.

The Arc is the largest national charity federation advocating for and serving 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.

We can serve as a resource for future shows, providing technical assistance and suggesting guests (experts in the I/DD field, self-advocates, professional support staff, and families) to help explain the complex issues facing people with I/DD for the audience who may have no interaction with people with disabilities in their daily lives. The result of your failure to include this perspective left the impression on your millions of viewers that Jeffrey, Janet, and other citizens with disabilities don’t have a voice and rights. They do.

The Dr. Phil show has a responsibility to get it right for your viewers, including people with I/DD. On behalf of people with I/DD and their families, we ask that you plan another show that would demonstrate this history, illustrating how people with severe disabilities who were previously relegated to institutions have defied all expectations.

The timing is right for you to put these issues in the living rooms of Americans, as fifty years ago, President Kennedy made a call to the nation to help bring people with intellectual and developmental disabilities out of the shadows, to give them opportunities to lead productive, quality lives. We are also approaching the 30th anniversary of the state of New York announcing the closure of the nation’s most notorious institution, Willowbrook, which was an overcrowded, filthy, deplorable warehouse for thousands of children for decades and the site of a highly controversial Hepatitis A study starting in the mid-1950s through the 1970s.

The Arc stands ready and willing to assist you in preparing a program that accurately portrays the lives of people with intellectual and developmental disabilities, shows the rich history of this movement, and makes the public aware of just how similar people with severe disabilities are to you and me.

I hope you take The Arc up on our offer to be a resource for you so that you can live up to your duty as a journalist and so that people with I/DD have a seat at your table in upcoming episodes.

Sincerely,
Peter V. Berns
CEO, The Arc of the United States


What the Disability Community Can Do

If you share the same concern that we do about this episode, send Dr. Phil a message on Twitter and let him know your feelings. Use the hashtag: #VoiceofTheArc

Here’s an example:

@DrPhil Individuals who are non-verbal still have a voice. Give everyone a chance to hear them on a future show. #VoiceofTheArc

The Arc’s Leaders Invited to the White House for High Level Briefings and to Advocate for People with Disabilities

Washington, DC – Tomorrow, 150 leaders of The Arc from across the country will attend a White House Community Leaders Briefing. Over the course of the day, leaders of chapters of The Arc, including people with intellectual and developmental disabilities (I/DD), will be briefed by high level White House and Administration officials on topics ranging from Medicaid to education to community living and employment for people with I/DD, and have the chance to engage with and ask questions of these officials.

“This opportunity comes at a pivotal time for The Arc in our work to advocate for people with intellectual and developmental disabilities.  Our chapter leaders will add an invaluable perspective, from the front lines of our movement, in our ongoing conversations with senior officials at the White House.  I’m looking forward to The Arc’s network flooding the halls of the White House and listening to advocates from across the country tell their stories,” said Peter V. Berns, CEO of The Arc.

During the day-long event, participants will hear from senior White House and administration officials.  Additionally, there will be a series of policy breakout sessions that will allow for more detailed discussions on certain issue areas, like community living, education, and Medicaid. The purpose of these briefings is to allow White House and administration officials to hear from leaders of The Arc about how government policies affect the lives of people with I/DD and impact their ability to live full, independent lives.  This unique, face-to-face opportunity to speak directly to people in positions to make change from within the government will allow leaders of The Arc to make the voices of the millions of people with I/DD heard at the White House.  As The Arc gears up to raise awareness of I/DD during Developmental Disabilities Awareness Month in March , chapter leaders can take home new tools to help individuals in their communities utilize programs of the federal government.

“The Arc, as one of the largest organizations working with people with intellectual and developmental disabilities, brings a wealth of experience and insight to discuss today’s most important concerns facing persons with intellectual and developmental disabilities. We’re looking forward to having them here at the White House to deepen our partnership, and to discuss the issues we care about most,” Jon Carson, the Director of the Office of Public Engagement at the White House.

The Arc Responds to the U.S. House of Representatives Vote to Repeal the CLASS Program

Washington, DC – The Arc of the United States, released the following statement in response to the U.S. House of Representatives vote to repeal the Community Living Assistance Services and Supports (CLASS) Program.

“Repealing the CLASS Program could force Americans to wait another generation for a solution to the need for long term services.  This bill doesn’t change the fact that many Americans require these services, and it certainly doesn’t relieve the pressure off of Medicaid so that Medicaid can better serve the needs of low income communities.  This vote won’t be the last say on this issue, and The Arc stands ready to work with Congress and the Administration to find a workable solution,” said Peter V. Berns, CEO of The Arc.

The Community Living Assistance Services and Supports (CLASS) Program was created by the Affordable Care Act to help working adults prepare for their future in the event they need help maintaining independence in the community. If CLASS is not implemented, the Medicaid program will continue to take on the load of long term service needs for many individuals. Average home and community-based care now costs over $21,000 per year.  Few Americans have insurance to cover these costs.  Only 3% have private long term care insurance and the majority are forced to impoverish themselves to qualify for Medicaid.