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Parent, Advocate for The Arc Lunches With Vice President Biden to Discuss Fiscal Cliff’s Impact on His Family

/in /by The Arc

Washington, DC – Today, Bob Hage of Pennington, New Jersey, a parent of twin daughters with significant disabilities and tireless advocate for The Arc, met with Vice President Joe Biden for lunch along with six other individuals at the Metro 29 Diner in Arlington, Virginia to share his story about how a $2,000 or more middle class tax increase as a result of going over the “fiscal cliff” will impact his family’s ability to pay for disability-related expenses in 2013.

Bob Hage and his wife Odette Adrian are a middle class family struggling to make ends meet. They have a 13-year old son Vann, and twin 9-year old daughters Annika and Maya, who have severe developmental disabilities and are non-verbal and medically fragile. As a family with children with special needs, they experience the same expenses and stresses other families encounter. However, they also face the additional financial, emotional, and physical challenges of providing very expensive care for two of their children.

“This was a critical opportunity to impress upon the Vice President the importance of protecting Annika, Maya, and millions of families like ours from a tax increase that will have devastating consequences. My daughters can’t afford to lose the ground they have gained through therapies that will allow them to reach their full potential. Not only did Vice President Biden listen, he clearly understands the challenges families like mine face, and I walked away trusting that the Vice President will do everything he can to protect my daughters’ future,” said Bob Hage.

Bob Hage and his wife Odette Adrian want Annika and Maya to have happy and fulfilling lives just as other parents want for their children. In order for them to help Annika and Maya achieve these goals, they need to pay for critical services. If the country goes over the “fiscal cliff” and their taxes go up $2000 or more, they will be forced to eliminate some of their daughters’ therapies and activities, which have proven to be crucial to their development.

Annika and Maya go to speech therapy, which has been instrumental in moving them from being totally dependent on liquid tube feedings to eating all their nutrition from pureed foods. Currently, speech therapy’s primary goal is to help Annika and Maya learn to chew so they can eat solid food.

Annika and Maya have significant dental issues and anything other than regular checkups, such as fillings and beyond, requires hospitalization and anesthesia. These other routine procedures are not covered by their medical insurance and will be cost prohibitive.

Both girls participate in weekly music and gymnastics classes for children with special needs. While music and gymnastics is recreational for most children, it is vitally important to Annika and Maya’s development. The music class focuses on building finger strength and coordination through piano and helps the girls to vocalize through singing. The gymnastics class concentrates on building muscular strength and endurance which is especially important for children with low muscular tone.

An increase of $2,000 or more in taxes would have a major impact on the Adrian-Hages’ ability to provide the services and supports their children with severe disabilities need.

“Annika and Maya shouldn’t face the consequences of gridlock in Washington over taxes. My girls need these services to learn and keep basic life skills, like chewing food, and to gain some strength so that they can be as independent as possible. But my wife and I may be forced to make some unimaginable choices if our taxes go up by $2,000 at the beginning of the year,” said Bob Hage.

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The Arc’s Public Policy Director to Be Honored by Social Security Administration

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Washington, DC – Today, The Arc’s Marty Ford, will be honored by the Social Security Administration (SSA) for her years of leadership and commitment to SSA’s disability programs. Ford serves as the Director of The Arc’s Public Policy office, driving the organization’s public policy agenda.

In her current role, she leads the five person team representing The Arc on Capitol Hill and before federal agencies. With nearly 30 years of experience, Ford is a recognized leader in federal public policy affecting people with disabilities, particularly the Social Security disability system, long term services and supports, and Medicaid, and has testified numerous times before Congress. She served three years as Chairperson of the Consortium for Citizens with Disabilities (CCD), a coalition of over 110 national organizations, and continues as its Immediate Past Chairperson. She also serves on the Boards of Directors of the National Academy of Social Insurance and Advance CLASS.

The award will be presented by Michael J. Astrue, Commissioner of Social Security, on Capitol Hill on Thursday, December 6. During the event, Commissioner Astrue will also announce the expansion of the list of conditions that qualify under SSA’s Compassionate Allowances program. The Compassionate Allowances program is designed to quickly identify diseases and other medical conditions that, by definition, meet Social Security’s strict standards for disability benefits. Since its inception, the initiative has helped ensure that Americans with the most severe disabilities receive their benefit decision within days instead of months or years.

“I’m honored to be receiving this award, and I want to thank Commissioner Astrue for his years of service at the Social Security Administration and his efforts to improve the agency’s services to people with disabilities, including people with intellectual and developmental disabilities. As he wraps up his term, the expansion of the Compassionate Allowances program will be an important part of his legacy,” said Ford.

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The Arc Reacts to the U.S. Senate’s Defeat of the Convention on the Rights of Persons With Disabilities

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Washington, DC – The Arc released the following statement in response to the U.S. Senate’s defeat of the United Nations Convention on the Rights of Persons with Disabilities (CRPD).

“This is a sad day for individuals with disabilities across the globe. The simple truth is that the Convention on the Rights of Persons with Disabilities would help individuals with disabilities around the world obtain the rights and protections we have here in the United States. The ratification of this treaty would have unified us with millions of disability advocates, family members, and self-advocates of all nations. This isn’t the end of this fight – advocates across our country will continue to work to make sure that our friends and colleagues abroad know that we stand with them and share their goals,” said Peter Berns, CEO of The Arc.

The Arc has been working with numerous other disability advocacy groups and U.S. Senators to garner support for the ratification of this treaty, which will promote, protect, and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities. For months, The Arc’s Public Policy team and grassroots advocates across the country have been working to promote the CRPD and ensure ratification. And in October 2012, The Arc hosted its annual convention in Washington, DC with Inclusion International, a global federation of family-based organizations advocating for the human rights of people with intellectual disabilities worldwide. A major focus of the conference was the vital importance of the CRPD and the release of Inclusion International’s Global Report on the Right to Live and Be Included in the Community.

The United States signed the CRPD on July 30, 2009, joining the 141 other signing nations. As of June 2012, the Convention had 113 ratifications and 153 signatures. On May 17, 2012, following almost three years of thorough review, the Obama Administration submitted its treaty package to the U.S. Senate for its advice and consent for ratification. Over 165 disability rights organizations and 21 veterans’ service organizations support ratification of the treaty. Senator Bob Dole, who was a champion of the Americans with Disabilities Act, was present for the vote and urged his fellow Republicans to vote in favor of the treaty. Unfortunately, his plea along with strong Congressional and disability community support was not enough to overcome the unfounded fears raised by the opposition.

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The Arc Responds to ABC News Report on Restraint and Seclusion

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Washington, DC – After reviewing the ABC News piece on restraint and seclusion in America’s schools, The Arc issued the following statement.

“No child should ever be exposed to these kinds of harmful practices. Children with disabilities are especially at risk and these practices are used on them at disproportionate rates. The Arc applauds ABC News’ work to shed light on restraint and seclusion in America’s schools, and we hope it sparks action in Congress to pass legislation to put in place national standards that keep our classrooms safe and require all school personnel to receive training in effective positive behavioral interventions,” said Peter Berns, CEO of The Arc.

Background

Reports from the Government Accountability Office and the National Disability Rights Network have documented 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 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.

In March of 2012, The Office for Civil Rights in the U.S. Department of Education 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.

The Arc supports the Keeping All Students Safe Act, introduced by U.S. Senator Tom Harkin of Iowa and U.S. Representative George Miller of California, 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.

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The Arc at the Table With President Obama to Discuss Tax Cuts for the Middle Class, Budget, and Medicaid

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Washington, DC– Today, The Arc’s CEO Peter Berns participated in a small meeting with President Barack Obama, Vice President Joe Biden, and senior economic advisors about the President’s goal to stop middle class tax increases and to raise revenues to help invest in the nation and reduce the deficit. The discussion centered on the urgency of passing a plan to avert raising taxes on the middle class and to raise revenues to finance the federal government without allowing drastic cuts to programs that people with intellectual and developmental disabilities (IDD) and other vulnerable groups rely on, like education, housing and employment. These cuts are scheduled to take place on January 1, 2013, along with the expiration of a variety of tax provisions. Without a deal this year, The Arc is very concerned about the future of Medicaid and Supplemental Security Income, along with Social Security and Medicare.

“I think everyone agrees that raising taxes on the middle class will hurt families, and that it would be particularly troubling to those that have a loved one with IDD. These families report that they already don’t have the money they need for the care and support their loved ones need to live a decent life in the community. What will they do if they suddenly have a bigger tax bill come January 1st?” Berns said.

“We welcome the President’s framework for generating revenue and protecting low income families,” Berns added. “Medicaid, Medicare, Social Security, and Supplemental Security Income, which are lifeline programs for people with disabilities, should not be at risk in these budget negotiations. This approach from President Obama would help keep our nation’s commitment to people with disabilities.”

The Arc has been on the front lines of the recent budget battles to protect Medicaid, Social Security, Supplemental Security Income, and Medicare from cuts. As the nation faces this January 1 deadline, known as the “fiscal cliff”, The Arc is urging Congress to restore the scheduled cuts in non-defense discretionary programs and find other ways – specifically through increasing revenues as included in President Obama’s plan – to move the nation forward. This effort is critical to protecting the people that rely on Medicaid, Social Security, Supplemental Security Income, and Medicare from losing these critical services and supports.

“We can’t afford to not protect Medicaid. Medicaid is the lifeline keeping people with disabilities from unfathomable alternatives – like being institutionalized and losing their independence – and preserving all that we have worked for as a nation over the last 60 years to bring people with disabilities out of the shadows and into society,” said Berns.

Berns was joined at the White House by Sister Simone Campbell, NETWORK, Chad Griffin, Human Rights Campaign, Wade Henderson, Leadership Conference on Civil Rights, Deepa Iyer, National Council of Asian Pacific Americans, Ben Jealous, NAACP, Marc Morial, National Urban League, Janet Murguia, National Council of La Raza, Barry Rand, AARP, Kristin Rowe-Finkbeiner, MomsRising.org, Rev. Al Sharpton, National Action Network, Aaron Smith, Young Invincibles, and Rev. Jim Wallis, Sojourners.

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The Arc of Virginia to Receive National Award for Victory on Closing Institutions

/in /by The Arc

Washington, DC – On October 26, The Arc of Virginia will be honored with The Arc’s Advocacy Matters! Award for their ongoing advocacy work on behalf of individuals with intellectual and developmental disabilities (IDD) in Virginia. The Arc of Virginia played an instrumental role in the Commonwealth of Virginia and the U.S. Department of Justice (DOJ) reaching an historic settlement (U.S. v. Virginia Settlement Agreement) requiring the state to close some institutions and provide community-based services for thousands of individuals with IDD. The award will be presented during The Arc of the United States’ National Convention and International Forum. Jamie Liban, Executive Director of The Arc of Virginia will accept the award on behalf of the organization.

“The Arc of Virginia has tirelessly advocated on behalf of individuals with intellectual and developmental disabilities for decades. Like all civil rights victories, there were many advocates working for a common cause leading up to this historic settlement. We are proud of the amazing work of Jamie Liban, The Arc of Virginia Board of Directors and the thousands of advocates who helped make this a reality for the people of Virginia,” said Peter Berns, CEO of The Arc.

Judge John A. Gibney of the United States District Court for the Eastern District of Virginia issued an order approving the settlement in U.S. v. Virginia Settlement Agreement on August 23. The signing of the court order means that Virginia will move from a system that is reliant on large, segregated institutions to one that is focused on safe, integrated community-based services. Virginia will close four of five institutions and provide new Medicaid waiver services for more than 4,000 individuals. Once the waivers are fully funded, thousands of individuals with IDD will receive the services they need to remain in their homes in the community and many individuals living in institutions will be able to move into community settings.

Jamie Liban will also participate in a concurrent session with officials from the Department of Justice during convention. During the session, she will share The Arc of Virginia’s experience over the course of the DOJ investigation, negotiations and litigation, as well as The Arc of Virginia’s plans to continue its advocacy work throughout the implementation phase. The session will provide an overview of activities related to the U.S. v. Virginia Settlement Agreement and advise other chapters of The Arc on how they can support DOJ in their enforcement of the Americans with Disabilities Act and the Olmstead decision, a ruling that requires states to eliminate unnecessary segregation of people with disabilities and to ensure that persons with disabilities receive services in the most integrated setting appropriate to their needs.

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

/in /by The Arc

Washington, DC – On October 25, Don and Laurie Istook will receive The Arc’s Image and Inclusion Award during the National Convention and International Forum. This award recognizes a person or group who has had an impact on accurate and positive portrayals of individuals with intellectual and developmental disabilities (IDD). In 2012, The Arc launched The Arc Audi Racing Program, a new partnership between The Arc and Istook’s Motorsports. The program provides a unique opportunity for people with 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 across the country, and serve as “Honorary Crew Members” with Don’s team.

“There is still a lingering misperception that individuals with intellectual and developmental disabilities can’t have meaningful jobs in the community. Don and Laurie Istook know better than that and have helped open the eyes of the racing community and many others through their work running The Arc Audi Racing Program. We admire the Istooks for bringing this innovative idea to The Arc earlier this year, but most of all we admire their work to promote the inclusion of individuals with disabilities in the community, the workforce, and now on racetracks across the country,” said Peter V. Berns, CEO of The Arc.

Long time racer and team owner Don Istook and his wife Laurie have a personal connection to the 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 team pit crew. Inspired by their success, Don and Laurie contacted the national office of The Arc to propose a program to give select chapters of The Arc across the country the opportunity to be an integral part of five races in 2012. Participants in The Arc Audi Racing Program have been able to see the cars, talk to the crew and play a hands-on role in preparing the cars for the race. Chapters of The Arc have attended Pirelli World Challenge races in Long Beach, CA; Monterey, CA; Detroit, MI; Lexington, OH; and Sonoma, CA. With this experience in hand from 2012, the team is preparing for an even greater 2013 season, which will feature an additional Audi TT RS to make a two car team.

Speaking about her brother, Mark, Laurie Istook said: “Mark loves being able to say ‘I work for a race team.’ It just gives him a meaning and a purpose for his life. It gives him something to look forward to – that’s what we all want.”

She added: “I remember after the first race this year, Don came over and just hugged me for the longest time. And he said ‘I don’t ever remember feeling this great after a race.’”

Previous recipients of The Arc’s Image and Inclusion award include Lauren Potter and Robin Trocki from the hit TV show Glee and Dr. Temple Grandin, world renowned scientist.

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

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

Some of the featured speakers include: Rosangela Berman-Bieler, Chief of the UNICEF Disability Section, Vivian Fernández de Torrijos, former First Lady of the Republic of Panama, Eve Hill, Senior Counselor to the Assistant Attorney General, U.S. Department of Justice, and Ricardo Thornton, an inspiring self-advocate who speaks publicly about his life in the community with his family.

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

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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 (IDD) 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 IDD, 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 IDD, including one-on-one support, education groups, mentoring, and more.

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

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

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The Arc Launches “eXplore eRecycling” Sustainability Initiative

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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 (IDD).

“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 IDD.

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