Join us at the 2013 Disability Policy Seminar

Disability Policy Seminar 2013Does what happens in Washington, D.C. really matter? Can you make a difference? You bet! Every day millions of Americans with intellectual and developmental disabilities are impacted by the public policy decisions – big and small — made by their representatives in Congress.

And each year, hundreds of advocates attend the Disability Policy Seminar in Washington, D.C. to learn more about and discuss the hottest topics in disability public policy. We invite you to join us April 15-17 for an opportunity to advance the grassroots movement for people with I/DD and make sure your elected officials know what’s important to you.

Monday and Tuesday, April 15 and 16, are filled with informative in-depth sessions from disability policy experts and opportunities to network with others from your state. And, we’ll have a “newcomers” track with sessions designed for people who are new to federal public policy advocacy to answer questions and give you the background you need. Then the event culminates on Wednesday, April 17 with a breakfast on Capitol Hill before you personally meet with your elected representatives and make a case for their cause supported by information about the issues provided during the Seminar.

Register now and book your room at the Grand Hyatt in downtown Washington D.C. for a special early registration rate at www.disabilitypolicyseminar.org and find out more details about the stimulating program on tap for this year’s event. But act soon – special rates on rooms ends March 12.

DPS Partners

Hosted by: The Arc, United Cerebral Palsy (UCP), Association of University Centers on Disabilities (AUCD), American Association on Intellectual and Developmental Disabilities (AAIDD), National Association of Councils on Developmental Disabilities (NACDD), and Self-Advocates Becoming Empowered (SABE)

Sponsored by: Autism Society and NADD, an association for persons with developmental disabilities and mental health needs

Be a presenter at this year’s convention!

We are currently seeking proposals for innovative, motivating, and interactive presentations for our 2013 National Convention in Bellevue, Washington. Next year’s theme “Achieving Momentum” reflects The Arc’s continuing progress and forward movement. Each year, we are growing not only as an organization but as a grassroots movement working in communities across the country to promote our mission. Utilizing new technologies and innovative programs, we are extending our reach and more importantly making more of an impact.

The Arc encourages proposals that reflect our core values, involve people with intellectual and developmental disabilities (I/DD), family members, advocates and/or professionals, and/or provide opportunities for participants to walk away with a vision and concrete plan for action.

As we continue to achieve momentum in all we do as an organization, we have specific topics we want to discuss during next year’s convention:

  • Technology: Presentations/Sessions that introduce and/or educate individuals about how technology can improve the lives of individuals with I/DD by assisting them in school, work, recreational activities, and facilitate better inclusion in their communities either through assistive technology, online educational tools or better communications and operations systems for more effective delivery of services.
  • Family Support: Presentations/Sessions that demonstrate creative supports for family members as they work to help promote their loved ones’ full inclusion in the community. This can include community activities or groups, programs, community tools or online resources that can be utilized by family members to assist them with advocating for their family members, communicating with their family members and each other, planning for the future and accessing services and supports.
  • Chapter Innovations: Presentations/Sessions that demonstrate innovative programming or initiatives of chapters of The Arc or collaborations with community partners which are propelling the intellectual and developmental disability community forward, either by providing innovative avenues for inclusion, increased competitive employment, better and/or more efficient services and supports, or the development of innovative leadership, collaboration, fundraising/friend-raising, or operational activities that can serve as best practice examples for other nonprofit organizations.
  • Growing the Grassroots: Presentations/Sessions that demonstrate progressive and impactful advocacy for people with intellectual and developmental disabilities at the local, state, regional or national level through the development and mobilization of a strong grassroots advocacy community.

Please keep in mind that concurrent sessions will be held between August 2-4, 2013. As a presenter, you must be available on these dates. We encourage self-advocate participation in all sessions as participants and presenters. Submit your application using this form.

The deadline for submission of presentation ideas is February 1, 2013. Selection of presentations will take place on or about March 29, 2013. Please contact Laurie Edson, Director of Chapter Excellence: edson@thearc.org if you have any questions.

What Do You Think About Autism NOW?

Have you ever visited www.autismnow.org? We’d like to know what you think. Did you find what you were looking for? Do you have any suggestions for how we might improve? Take our short survey to help us ensure that this website is serving you well.

If you’re not familiar with autismnow.org, we highly recommend you take a look. Autism NOW: The National Autism Resource and Information Center is a project of The Arc funded, in part, by a grant from the Administration on Intellectual and Developmental Disabilities. It is designed to be a dynamic, interactive and central point of quality resources and information for people with Autism Spectrum Disorders (ASD) and other developmental disabilities as well as their families and others. In addition to autismnow.org, this project has created events, online education opportunities and a vibrant online social community dedicated to collecting and sharing quality information, vetted by experts and easily accessible. If you are an individual who identifies as being on the Autism spectrum or are just interested in getting more information about ASD, we invite you to explore and share the site and then take the survey if you have some feedback you’d like to give.

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

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 (I/DD), 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 I/DD 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 I/DD.

“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 I/DD,” 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 I/DD.

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

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 benefitted 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.

The Arc Reacts to New Proposals in Budget Negotiations That Could Result in Cuts to Social Security

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.

Generous Donor Offers Matching Gift

Donate Now!

Good news! A generous donor and long-time supporter of The Arc, Quincy Abbott, offered to match any donation you may make by the end of the year up to $2500. That means that we have an opportunity to double our impact on the lives of people with intellectual and developmental disabilities with your help! Know that any amount you give by December 31, 2012 will be matched dollar for dollar by this benefactor and that money will go toward fulfilling The Arc’s goals to promote and protect the rights of people with I/DD to live, learn, work and play as valued and contributing members of their communities. Every dollar counts – donate today!.

The Arc’s Statement on the Tragedy in Newtown, Connecticut

“On behalf of The Arc and the families we represent, our thoughts and prayers are with the families of these children and their teachers in this horrific tragedy.  Our hearts are simply broken for the parents, loved ones, and the community of Newtown.

“There are so many questions surrounding this tragedy.  As more information comes to light, the media is reporting that the individual responsible for this violence may have Asperger’s Syndrome, a diagnosis on the autism spectrum.  As we struggle with this tragedy, it is important that the public is aware that people with autism spectrum disorders are not more likely than others to be violent.    This is a horrific event in our nation’s history, and as we mourn, we must come together as a nation to support this Connecticut community.”

Media inquiries can be sent to Kristen McKiernan, mckiernan@thearc.org

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.

The Arc Announces New Members to Serve on National Board of Directors

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 (I/DD) 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 I/DD 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 I/DD 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 I/DD 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 I/DD.  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).