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The Arc Applauds Social Security Administration Ending Use of the “R-Word”

/in /by The Arc

Washington, DC – In an historic change for people with intellectual disabilities (ID), the Social Security Administration (SSA) announced its intent to stop using the phrase “mental retardation” and start using “intellectual disability” in its official Listing of Impairments.

This change, which The Arc and many other organizations advocated for, comes a little over two years after President Barack Obama signed Rosa’s Law. In 2010, The Arc was very involved in efforts to end the use of the “r-word” and worked to enact Rosa’s Law, which substituted the stigmatizing word with the terms “intellectual disability” and “individual with an intellectual disability” in federal health, education, and labor policy statutes. While the legislation did not cover programs such as Medicare, Medicaid, and Social Security, it was an important stepping stone for shaping future legislation and efforts that will transform these outdated terms in all federal laws. The Social Security Administration’s actions are a welcome result of the success of Rosa’s Law.

“Changing how we talk about people with disabilities is a critical step in promoting and protecting their basic civil and human rights. This is an important moment for people with disabilities because Social Security is a lifeline to so many – it allows people with ID to live in their communities and be as independent as possible. And now, the language the agency uses will reflect the respect people with ID deserve,” said Peter Berns, CEO of The Arc.

The proposed regulation published today has a 30-day comment period, and we encourage people to submit comments in support of the proposed regulation online by February 27, 2013.

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The Arc of the Mid Ohio Valley Responds to Local Incident Involving Restraint and Seclusion

/in /by The Arc

By The Arc of the Mid Ohio Valley

It is our position at The Arc of the Mid Ohio Valley that every child deserves to be treated with dignity and respect, be free from abuse and bullying, and that policies restricting the use of restraint and seclusion should apply to all children, not just children with disabilities.

Furthermore, The Arc of the Mid Ohio Valley believes that all individuals involved in the education of students with disabilities must:

  • Ensure that students with disabilities are not subjected to unwarranted restraint or isolation and must ensure that any behavioral intervention is consistent with the child’s civil rights.
  • Ensure that teachers and related services personnel, as well as their representatives are prepared to teach and/or support students effectively in the general education curriculum and in inclusive settings to the maximum extent appropriate, alongside students who do not have disabilities.
  • Develop Individualized Education Plans (IEPs) that build on student strengths, meet the student’s needs, and offer supports and services necessary to achieve success, that ensure students are served in the least restrictive environment (LRE), as determined for each student.

As outlined in West Virginia Code, the legislature charges school administrators, faculty, staff and volunteers with “demonstrating appropriate behavior, treating others with civility and respect, and refusing to tolerate harassment, intimidation or bullying”, which is any intentional gesture, or any intentional electronic, written, verbal or physical act, communication, transmission or threat that creates an emotionally abusive educational environment for a student.

With respect to this recent incident involving a 15-year old Wood County student who has a diagnosis of Asperger syndrome, it is important to point out that individuals with autism spectrum disorders are three times as likely as their typically-developing siblings to experience bullying, according to a recent national survey.

According to the survey of parents by the Interactive Autism Network (IAN) and Johns Hopkins University researchers, 61 percent of kids with Asperger syndrome have experienced bullying. In comparison, 28 percent of children with autism and 37 percent of children with other autism spectrum disorders have been bullied, parents reported.

Asperger syndrome is a form of autism, which is a lifelong disability that affects how a person makes sense of the world, processes information and relates to other people. Autism is often described as a ‘spectrum disorder’ because those with the diagnosis are affected in many different ways and to varying degrees.

The Arc of the Mid Ohio Valley is a non-profit organization dedicated to ensuring satisfying and productive lives for children and adults with intellectual and developmental disabilities. Through programs and services, they empower, encourage, and assist those individuals to live, learn, worship, work and play, in their community.

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The Arc Reacts to Approval of Deal to Avert “Fiscal Cliff”

/in /by The Arc

Washington, DC – The Arc released the following statement as the Congress approved a deal to avert going over the “fiscal cliff” – the series of harmful tax increases and spending cuts which Congress and the White House have been seeking to avoid for several weeks. With time running out, The Arc’s advocates had encouraged Congress to act before the deadline to protect disability related programs and extend tax cuts for the middle class.

“The Arc appreciates the Administration’s outreach to Congress to get this legislation passed so that middle class families with people with disabilities don’t see their income taxes rise in the New Year. Most people with intellectual and developmental disabilities and their families cannot afford a tax increase and this deal protects them. They also cannot afford cuts to critical programs and this legislation does not include such cuts.

“Throughout these tense weeks of negotiation, there were proposals on the table that would have greatly harmed people with intellectual and developmental disabilities (IDD), including a new way of calculating Social Security benefits known as the ‘chained CPI’ that would have impacted the ability of millions of people with IDD and other disabilities to be as independent as possible. This threat was excluded in this piece of legislation, as were harmful changes to Medicaid, a lifeline to people with IDD.

“Going into 2013, there will continue to be mounting pressure to generate additional revenue and to find additional cuts in the federal budget to reduce the deficit further, including the Medicaid, Medicare, and Social Security programs. The Arc’s advocates will be vigilant, putting pressure on Congress to protect these lifeline programs.

“The final legislation does include a repeal of the CLASS Act, a part of the Affordable Care Act to address access to costly long term services and supports in our society. We are deeply disappointed that this framework for solving a critical problem was repealed. However, we look to the Commission created in the legislation to work expeditiously to determine next steps to address this problem, including consideration of the needs of people with IDD,” said Peter Berns, CEO of The Arc.

Additional legislation will be necessary to address other aspects of the nation’s fiscal situation in the next three months, including an increase in the debt ceiling, the end of the 2-month extension included in this legislation of the sequester (automatic cuts), and appropriations for the remainder of Fiscal Year 2013. These deadlines will set the stage for additional negotiations between the Congress and the White House. The Arc will be working hard during these negotiations to preserve programs that are vital to people with IDD.

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The Arc’s Statement on the Military’s Pilot Program for Extending Behavioral Health Therapy for Autism Spectrum Disorders

/in /by The Arc

Washington, DC – The Arc released the following statement after the passage of the 2013 National Defense Reauthorization Act in the House and Senate. The reauthorization will create a one year pilot program to expand the treatment of autism spectrum disorders (ASD) by TRICARE, the health care program for our nation’s military.

“We appreciate this step forward for military families that have children with ASD. We are hopeful that the pilot program will lay the foundation for making critical behavioral health therapies available to military dependents with a range of developmental disabilities that can greatly benefit from the services.

“We regret that language developed by Senators Kirsten Gillibrand and Patty Murray extending coverage to dependents with other developmental disabilities was not included in the final bill. There is considerable research proving applied behavioral analysis (ABA) to be an effective intervention for a number of developmental disabilities, including ASD. ABA is particularly effective in reducing self-injurious behaviors in people with the most significant disabilities.

“The inclusion of other developmental disabilities would also have greatly benefited military families who have children with ASD since many of these children only receive their diagnosis after many years. Limiting the covered services to those with an ASD diagnosis will result in children not being treated at the earliest age possible, which is shown to have lifelong, cost effective benefits.

“We look forward to the Secretary of Defense’s report on the feasibility and advisability of establishing a beneficiary cost share for the treatment of ASD under TRICARE and its Extended Care Health Option (ECHO) Program for dependents with disabilities,” stated Peter V. Berns, the Chief Executive Officer of The Arc.

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New Proposals in Budget Negotiations Could Result in Cuts to Social Security

/in /by The Arc

Washington, DC – The Arc released the following statement in light of reports of new threats to Social Security in negotiations on a budget deal to avert the fiscal cliff. On the negotiating table is a change to the way benefits are calculated known as the “chained Consumer Price Index (CPI).”

“We are very disappointed by the newest proposals in Washington, DC that would result in a chained CPI. The chained CPI would cut all Social Security benefits, including for individuals receiving Social Security disability benefits and Supplemental Security Income. Social Security is an essential lifeline for individuals with disabilities, and the chained CPI would cut their benefits and unnecessarily damage their quality of life. Our nation cannot continue balancing the budget on the backs of individuals with disabilities and must preserve vital supports including Social Security, SSI, Medicaid, and Medicare,” said Marty Ford, Director, Public Policy Office, The Arc.

The chained CPI reduces the cost-of-living adjustment (COLA) that Social Security and Supplemental Security Income (SSI) beneficiaries receive in most years, resulting in people getting smaller benefit increases than they otherwise would under the current calculation.

Cuts from the chained CPI compound and get bigger every year. For the average Social Security Disability Insurance (SSDI) beneficiary, the chained CPI would mean a benefit cut of about $347 per year after 10 years, $720 per year after 20 years, and $1,084 per year after 30 years. After 30 years, the cut is roughly 1 months’ worth of benefits for the average SSDI beneficiary. For SSI, the chained CPI not only lowers the annual COLA but also reduces the initial SSI benefit, which is calculated using a federal benefit rate that adjusts annually for inflation.

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

/in /by The Arc

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.

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The Arc Announces New Members on National Board of Directors

/in /by The Arc

Washington, DC — The Arc elected a slate of new and returning members of the board of directors to lead its work for the next two years at its recent annual business meeting. This distinguished group includes professionals in the intellectual and developmental disability (IDD) field and affiliated services, parents, and self-advocates representing a cross section of leaders in this movement dedicated to promoting and protecting the human rights of people with IDD and supporting their full inclusion and participation in the community throughout their lifetimes.

The Arc’s new board president, Nancy Webster of Indian Head Park, Illinois, said upon her appointment: “I’m honored to be a part of this organization’s leadership at this critical juncture in our movement. We have come so far – closing institutions and moving people into communities across the country, expanding services so that people with disabilities are included in society, and educating the public about what people with IDD can achieve – but we have a lot of work ahead of us. New challenges emerge every day that threaten the progress we have made, and The Arc is uniquely poised to lead the charge to ensure the rights of people with disabilities are protected across the nation.”

Peter V. Berns, CEO of The Arc, said: “Under Nancy’s leadership and with the strong backing of the incredibly diverse and talented individuals appointed to our board, The Arc has powerful momentum going into 2013. I thank all of our new board members and outgoing appointees for their commitment to people with IDD and their dedication to the long term success of The Arc.”

The Arc’s Board Development Committee completed the process of preparing the slate of officers and directors for election in July. The Committee identified and selected a group of candidates that, collectively, has the knowledge, skills and expertise to meet The Arc’s leadership needs. The process by which the Committee worked to select the candidates unfolded over the course of a year, and included reviewing the board roles and responsibilities, developing a nominating process work plan, reviewing and updating the criteria relevant to board composition, conducting a board composition analysis, and completing candidate interviews. The slate was then presented at the 2012 annual business meeting.

National Board Members of The Arc

Officers

President: Nancy Webster, Indian Head Park, IL – Nancy has served as a member of the board of directors since 2002. Previously, she served as the Chair of the Committee on the Future of The Arc. Prior to joining the board of directors for The Arc, Nancy was active in The Arc of Illinois. Her first and most important advocacy role has been as a sibling to her sister, Martha, who has an intellectual disability.

Vice President: Ron Brown, Dallas, TX – Ron has served as a member of the board of directors since 2006. He has over 36 years of experience in the volunteer arena as an advocate for the disability community. He has served on the local, state, and national board of directors of The Arc.

Treasurer: M.J. Bartelmay, Hermitage, PA – M.J. has served The Arc at every level – national, state, and local since 1992. He is a Past-President of both The Arc of Pennsylvania and a local chapter. In addition to his work with The Arc, he has also held numerous positions as an advocate and leader for people with IDD. M.J. has a son with an intellectual disability.

Secretary: Elise McMillan, Nashville, TN – Elise has served as a member of the board of directors since 2005. She also serves as a Co-Chair of the Policy and Positions Committee, which is responsible for updating The Arc’s position statements. She is a Past-President of The Arc of Davidson County and The Arc of Tennessee and she remains actively involved with both chapters. In addition to her work for The Arc, Elise is Co-Director of the Vanderbilt Kennedy Center for Excellence in Developmental Disabilities; Director of Community Outreach; and Senior Associate in the Department of Psychiatry. Elise and her husband have three adult children, including a son with Down syndrome.

Immediate Past President: Mohan Mehra, Cortlandt Manor, NY – Mohan has served in leadership positions with The Arc at the national, state and local levels. He has 25 years of experience in business strategy, marketing, sales, and business development at General Foods Corporation and Kraft Foods and as a consultant for major consumer packaged goods companies. Mohan and his wife are parents of Brian, a young man with Down syndrome.

Returning Board Members

Tony Anderson, Sacramento, CA – Tony is the Chair of the National Conference of Executives (NCE), and Executive Director of The Arc of California.

Barbara Coppens, Cherry Hill, NJ – Barbara is a self-advocate and currently works as an Advocate Assistant with Disability Rights New Jersey. She also serves on the board of directors for The Arc of New Jersey and is a member of the governmental affairs committee. Over the years she has also been involved with Partners in Policy Making.

Hugh M. Evans, Baltimore, MD – Hugh is a Vice President of T. Rowe Price Group, Inc. He is the parent of a young daughter with Trisomy 21.

Gary Horner, Pittsburgh, PA –Gary is the Executive Vice President and Chief Financial Officer of ACHIEVA/The Arc of Greater Pittsburgh.

Thomas A. Judd, Esq. Minneapolis, MN – Thomas is an active member of The Arc of Greater Twin Cities in St. Paul, MN, where he served as president of the board of directors. He is personally connected to The Arc’s mission as a family member of several people with disabilities.

Michael Mack, Silver Spring, MD – Michael has been on the board of directors since 2004. He serves as Co-Chair of the Policy and Positions Committee that is responsible for updating The Arc’s position statements. Michael is the parent of a young man with an intellectual disability.

Joseph Meadours, Sacramento, CA – Joe is a self-advocate and author of three books, one of which focuses on policymaking from the viewpoint of a self-advocate.

Pat Napoliello, San Francisco, CA – Pat is a parent of Joseph, who has Angelman Syndrome, and has been the inspiration for her years of advocacy.

Randy Patrick, Aurora, CO – Randy is also on the board of The Arc of Colorado, and is an Account Manager with Rexell USA.

Kurt Rutzen, Minneapolis, MN –Kurt is a self-advocate and program specialist for the University of Minnesota Institute on Community Integration’s Research and Training Center on Community Living.

New Board Members

Fred Misilo, Northborough, MA – Fred is the Immediate Past-President of The Arc of Massachusetts and a longstanding board member of that chapter. He has devoted 35 years of service to The Arc both locally and nationally. Fred is an Officer and Chair of the Trust and Estate Department and Chair of the Elder Law and Special Needs Practice Group at the law firm of Fletcher Tilton PC.

Michele Poole, Lake Worth, FL – Michele has served for many years on the state and local level as the President of The Arc of Palm Beach and as board member. She is the current President of The Arc of Florida. On the national level, Michele was co-founder and Past President of the Shaken Baby Coalition. She has a daughter with a developmental disability. She is also CFO-Secretary-Treasurer at North Ridge Electric, Inc. in Pompano Beach, FL.

Philip Richards, Birmingham, AL – Phillip is the Past-President of The Arc of Walker County, Past-President of The Arc of Jefferson County, and currently sits on the board of The Arc of Alabama. On the national level, he has served on the Marketing and Resource Development Committee when The Arc began its work to develop a new visual identity and brand. Philip is a Manager of External Affairs at Energen, a diversified energy company.

Margaret-Lee Thompson, Redmond, WA – Margaret-Lee has worked in public policy for 40 years. She became a member of The Arc of Washington when her son was born in 1968, and has remained an active advocate with The Arc ever since. She is the founder of the King County Parent Coalition for Developmental Disabilities, a grassroots organization involved in advocacy and parent education.

Carol Wheeler, Washington, DC – Carol is a member of the President’s Committee for People with Intellectual Disabilities. Her professional experience includes leadership roles in a wide range of non-profit organizations and positions in the White House, on Capitol Hill and as Vice President of Government Affairs for the National Association of Broadcasters. She is the mother of a transition age son with Williams Syndrome.

On December 20, 2012 Gary Bass, Doug Church, and Kelly Piacenti are expected to be elected as Board Elected Directors:

Gary Bass, Washington, DC – Gary is the Executive Director of the Bauman Foundation, a Washington, DC based grant making foundation. In 1983, he founded OMB Watch, a national research, educational, and advocacy organization that he directed or 28 years. He has deep expertise in public policy and fundraising.

Doug Church, Oak Hill, VA – Doug is the Founding Chairman and Director of Virginia Heritage Bank, and the father of an adult son with intellectual and developmental disabilities. He also serves as the Chairman of the Arc of Northern Virginia’s Foundation

Kelly Piacenti, Chester, NJ – Kelly is the Special Needs National Director, The MetLife Center for Special Needs, and the mother of a young son with developmental disabilities.

The Arc also thanks our outgoing Board members: Joyce Lipman (Maryland), Susan Bassett (Indiana), Sam Givhan (Mississippi), and Mary Jordan (Tennessee).

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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

/in /by The Arc

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

/in /by The Arc

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.