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The Arc Selected as a Top Nonprofit Working for People With Disabilities

/in /by The Arc

WASHINGTON, DC – The Arc has been chosen as one of the top nonprofits working for people with disabilities by Philanthropedia, a subsidiary of GuideStar, which is a nonprofit organization working to help make the public, including donors, aware of the highest impact nonprofits in a cause. The Arc was selected as one of eleven high-impact nonprofits in the disability field by a group of 79 experts, including foundation professionals, nonprofit senior staff, academics, and researchers.

The experts evaluated each nonprofit based on their ability to carry out their mission, their organizational strengths and, most importantly, evidence of the impact they are achieving on behalf of the people and communities the nonprofit serves. According to one expert who reviewed The Arc’s submission, “The Arc is the nation’s touchstone for individuals with intellectual disabilities and their families. The Arc has become the national center for information dissemination. In addition, its leadership has committed itself to ensuring that Washington keeps people with disabilities in the forefront when making important employment, health care and related decisions.”

Philanthropedia, which was acquired by GuideStar in April 2011, is unique from other online rating sites or donation sites because they use experts to identify high-impact nonprofits. GuideStar is the industry leader in nonprofit data with information on more than 1.8 million nonprofits. And, as an industry leader, GuideStar has a national audience of millions of professionals, funders, advisors, individuals, and others.

“We are honored to have received this distinction from Philanthropedia and GuideStar. For the last 60 years, The Arc has led the movement for improving the lives of individuals with intellectual and developmental disabilities. In order to continue our mission, we need the support of donors, advocates, and dedicated professionals in the disability field, and this acknowledgement can only help us grow at all levels, nationally and in local communities across the country,” said Peter V. Berns, The Arc’s CEO.

To read more about experts in the field have to say about The Arc, click on the Expert Reviews section on The Arc’s organization profile. All the information collected from the research is available on Philanthropedia’s website and will shortly be available on GuideStar Take Action’s website.

The Arc has also been honored by BBB/Wise Giving Alliance and American Institute on Philanthropy and the recently released Charting Impact initiative as it works alongside its network of over 700 chapters to implement is high impact practices in its own governance and management.

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The Arc’s Statement on Budget Deal and Impact on People With Intellectual and Developmental Disabilities

/in /by The Arc

WASHINGTON, DC – The Arc, the nation’s largest and oldest human rights organization for people with intellectual and/or developmental disabilities, released the following statement from its CEO Peter V. Berns on the passage of the budget and debt ceiling deal in Washington.

“While we are glad that the immediate crisis has passed and Medicaid survived the first round of budget cuts in Washington, this fight is far from over. Now more than ever, people with intellectual and developmental disabilities, their families, friends and colleagues need to stand up and make their voices heard.

We must continue to press Congress to protect people with disabilities. The Medicaid lifeline, along with other programs that help ensure inclusion of people with intellectual and developmental disabilities in society, are still at stake,” said Berns.

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Temple Grandin Brings Her Celebrity Status and Autism Advocacy to The Arc’s National Convention

/in /by The Arc

WASHINGTON, DC – Dr. Temple Grandin, whose life and work inspired the award-winning HBO biopic starring Claire Danes, will be the keynote speaker at this year’s national convention of The Arc, the country’s leading and largest organization for people with intellectual and developmental disabilities (IDD).

Dr. Grandin, who has autism, is one of the top scientists developing groundbreaking methods for more humane handling of livestock.  She is renowned for her design of animal handling facilities – currently, half the cattle in the U.S. and Canada are handled in equipment she designed. Dr. Grandin has also developed animal welfare guidelines for the meat industry and consults with McDonalds, Wendy’s International, Burger King, and other companies on animal welfare. She is a professor and researcher at Colorado State University, and was honored in Time Magazine’s “The 100 Most Influential People in the World.”

At age two, Dr. Grandin was non-verbal, and exhibited all the signs of severe autism. Through intensive teaching and speech therapy, she learned to speak. As a child growing up on an Arizona ranch with her aunt, and with the guidance of a high school science teacher, Dr. Grandin was motivated to pursue a career as a scientist and livestock equipment designer.

“Dr. Grandin’s appearance at The Arc’s national convention is sure to inspire the hundreds of members, staff, volunteers, families and individuals with IDD that will gather in Denver in September. This convention comes at a critical time in our efforts to reinvigorate our movement and grow The Arc,” said Peter Berns, CEO of The Arc.

In addition to Dr. Grandin, other celebrities in the disability community will be on hand, including actress Lauren Potter from Glee and Dr. David Braddock, the force behind the “State of the States” report on disability issues. The 2011 Convention will take place in Denver, Colorado, September 16 – 18, at the Sheraton Denver Downtown.

The Arc advocates for and serves people with IDD, 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 IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

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The Arc Celebrates the 21st Anniversary of the Americans With Disabilities Act

/in /by The Arc

Washington, DC – The Arc of the United States today celebrates the 21st anniversary of the Americans with Disabilities Act (ADA). This landmark civil rights law was created to eliminate discrimination against people based on their disabilities.

“Today serves as a reminder to us of not only how far we have come in the last 21 years, but of how much there is still left to do,” said Peter V. Berns, Chief Executive Officer of The Arc. “The ADA has empowered millions of individuals with disabilities over the last two decades, yet there is still much discrimination facing individuals with intellectual and developmental disabilities. This anniversary should serve as a call to action – our work will not be complete until there is full inclusion and equality for individuals with disabilities.”

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 (IDD) 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 advocates for and serves people with IDD, 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 IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

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Families of The Arc Meet With White House on Medicaid Funding as Budget Deal Nears

/in /by The Arc

WASHINGTON, DC – Today, families from West Virginia, Texas, Georgia, and Virginia joined The Arc at a meeting with Phil Schiliro, Assistant to the President and Special Advisor, John Carson, Deputy Assistant to the President, Jeff Crowley, Senior Advisor on Disability Policy, and Kareem Dale, Special Assistant to the President to discuss the impact on people with intellectual and developmental disabilities (IDD) if deep Medicaid cuts are included in a budget deal. As President Obama continues to engage in deficit reduction talks, The Arc, the nation’s largest and oldest human rights organization for people with IDD, and its members are calling on Congress and the White House to keep Medicaid and programs that support those with IDD intact.

Medicaid provides a critical lifeline for people with IDD. It provides assistance with living in the community, respite services, assistance with daily living such as help getting dressed, taking medication, preparing meals, managing money, and getting in and out of bed. Nationwide, state and federal Medicaid together provide over 75% of the funding for these services for people with IDD. Medicaid is also the primary source of health insurance for people with IDD and provides needed health care services such as prescription drugs, dental, physical therapy, speech therapy, prosthetic devices, wheelchairs and other health care services for eligible people. Private insurance is often unavailable or unaffordable for people with IDD due to discrimination in health insurance, high unemployment, and other factors.

“The Arc had the opportunity to touch the hearts and minds of some of the most powerful people in government today, and our message was clear – don’t cut the lifeline for these families. Medicaid is crucial to the health, well-­being, and future of these families, and without it, they would be forced to quit their jobs or sacrifice much of the progress their children have made with support from Medicaid,” said Peter Berns, CEO of The Arc.

About the Keatons of Milton, West Virginia:

Amanda and Greg Keaton are parents of 18-­month-­old Graysen, who has DiGeorge Syndrome. DiGeorge syndrome is a disorder caused by a defect in chromosome 22, resulting in the poor development of several body systems. Graysen’s main medical conditions include two severe congenital heart defects -­ Tetralogy of Fallot and Pulmonary Atresia. In addition, Graysen has required a tracheostomy and ventilator support since 8 weeks old. Graysen spent his first six and a half months in the hospital, and his one year anniversary at home was June 21, 2011. In his young life, Graysen has suffered two strokes, undergone three open heart surgeries, a feeding tube placement, multiple heart catheterizations, and he hit the $1 million cap on his mother’s health insurance before he turned four months old. Graysen’s nursing care, specialized pediatric tube feedings, along with other important therapies and preventive medications and vaccines are covered by Medicaid through West Virginia’s Children with Disabilities Community Services Program.

About the O’Briens of Waycross, Georgia:

Deirdre O’Brien has two children, including her 13-­year-­old daughter, Clare, who has significant intellectual disabilities. Clare also suffers from abdominal migraines, which are similar to traditional migraines but the pain is in the stomach and causes her to vomit continuously for days. Two years ago, Clare’s migraines became very severe, occurring nearly every two weeks. Her hemoglobin dropped severely, she missed a significant amount of school and her parents missed work to take care of her. During this period, the O’Brien family saw no alternative but for Deirdre to quit her job and stay at home in case her daughter became ill. The state of Georgia recognized Clare’s needs and she was granted a small Medicaid home and community based waiver, which allowed Deirdre to hire staff to help care for her daughter.

About the Rodriguezes of Tomball, Texas:

Natalie and Ruben are parents of 31-­year-­old TJ, who was born with significant intellectual and developmental disabilities. TJ needs assistance with everyday activities like bathing, brushing his teeth, getting dressed in the morning, communicating effectively, walking,
and preparing his meals. As he has gotten older, TJ’s mobility challenges have greatly increased along with his medical needs. Medicaid covers TJ’s neurologist, endocrinologist, rehabilitation specialist, occasional home care, speech therapist, orthopedic specialist, primary care, and his prescriptions. In addition, through TJ’s Medicaid Home and Community Services slot, which took nine years to receive, his parents have been able to make modifications to their home that allow TJ to live with them, like ramps and bathroom modifications.

About the Brandts of Springfield, Virginia:

Carrin and Mitchell Brandt are parents of 10-­year-­old Bailey, who has an intractable (uncontrolled) seizure disorder, cerebral palsy, a history of aspiration and significant global delays. Bailey needs assistance and support with all daily living and recreational activities, and Medicaid helps pay for it. She has a shunt, a G-­tube, and uses a communication device. Bailey has had more than five seizures daily, and Medicaid paid for her brain surgery to remove her left hemisphere for better seizure control. Medicaid has paid for over fifteen seizure medications, one of which was over $1,000 for a one week supply. She has had orthopedic issues, including a hip displacement and a leg length discrepancy. When Bailey grows older, she will need Medicaid for long-­term support needs, such as residential and day support.

The stories these families have shared with the White House dramatically illustrate the findings from the The Arc’s recently released report Family and Individual Needs for Disability Supports (FINDS). The FINDS survey of nearly 5,000 family respondents demonstrates that families across the country have similar experiences. For example:

  • One-­third of parents and caregivers reported that they are on waiting lists for government funded services, with the average wait more than five years.
  • One out of five families report that someone in the family had to quit a job to stay at home and support the needs of a family member.
  • Most family caregivers (58%) provide more than 40 hours of care per week (including 40% who provide more than 80 hours of care per week). This interferes with their work (71%) and causes physical (88%) and financial strain (81%).
  • Sixty two percent of caregivers reported a decrease in services for their family member with a disability.

“These statistics came to life at the White House today, as these families exemplify what it means to be on a waiting list for services for nine years, and what life looks like when parents face a choice between working and caring for their loved one,” said Marty Ford, The Arc’s public policy director.

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The Arc Commends Senator Franken’s Commitment to Protecting Medicaid

/in /by The Arc

WASHINGTON, DC – The Arc is commending Senator Al Franken of Minnesota for pledging to protect the federal Medicaid program. Senator Franken met recently with leaders and members from The Arc Minnesota and with families who benefit from programs provided by Hammer, a disability service provider in Wayzata, Minnesota. Invoking the late Senator Hubert Humphrey, Franken said, “Who we are as a society both in Minnesota and across this country is defined by how we treat the most vulnerable. The kind of state Minnesotans want to live in is one that supports our citizens with disabilities. I will fight cuts to Medicaid that don’t protect these essential services.”

Medicaid is the primary source of health care coverage for people with intellectual and developmental disabilities (IDD), providing them medical care, dental care, physical therapy, and assistive devices like wheelchairs, among others. Medicaid currently covers 60 million low-income Americans including nearly 30 million low-income children, 15 million adults and 8 million non-elderly people with disabilities. The program is being threatened by cuts proposed by some in Congress.

“Medicaid is the lifeline to the community for people with intellectual and developmental disabilities,” said Marty Ford, Public Policy Director for The Arc. “We cannot tolerate the kinds of cuts to Medicaid being proposed by the U.S. House of Representatives. We are very worried these cuts would return people with disabilities to institutions, which unacceptably segregate people and are generally more expensive. We have fought hard for many decades to get people with disabilities out of these institutions; we don’t want to go back.”

The House of Representatives passed a budget plan, known as the Ryan Plan after its author, Congressman Paul Ryan of Wisconsin, in April that cuts programs for people with intellectual and developmental disabilities. The bill includes drastic cuts and changes to:

  • Medicaid: Cuts $750 billion over 10 years and ends Medicaid as a guaranteed benefit by turning it into a “block grant” that leaves cash-strapped states to fill in the funding gaps with very little oversight.
  • Medicare: Replaces Medicare with a voucher program for younger beneficiaries that will certainly provide less than the current system.
  • Discretionary Programs: Eliminates, over time, most federal government programs outside of health care, Social Security, and defense as the cuts are so deep.
  • Health Care Reform: Repeals and defunds the Affordable Care Act.

Pat Mellenthin, Chief Executive Officer of The Arc Minnesota expressed gratitude for Senator Franken’s support. “We thank Senator Franken for his willingness to be a champion for people with disabilities by protecting Medicaid. The proposed cuts to Medicaid at the federal level are a double blow to people with disabilities, as they are already being targeted for drastic cuts in their services at the state level.”

Tim Nelson, CEO of Hammer and President of The Arc Minnesota, also praised the Senator’s commitment. “The services that we provide help people with disabilities be included in our communities and help them become contributing citizens. Cuts being proposed to Medicaid would pull people out of our communities and make them more isolated.” Hammer’s services are funded by a combination of state Medical Assistance and federal Medicaid dollars.

The Arc advocates for and serves people with IDD, 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 IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

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New Data Reveals Our Nation Is Neglecting People With Intellectual and Developmental Disabilities

/in /by The Arc

Survey findings from human rights organization, The Arc, reveal nation’s efforts fail to provide fundamentals for individuals and families

WASHINGTON, D.C. (June 14, 2011) – Fifty years ago, President Kennedy called on the nation to bring people living with intellectual and developmental disabilities (IDD) “out of the shadows,” to give them opportunities to lead productive, quality lives. Sadly, new data released today from The Arc’s Families and Individual Needs for Disability Support (FINDS) survey shows efforts have plateaued and not nearly enough progress has been made to create these opportunities. While budget cuts and economic strain have hurt all Americans, the 7 million living with IDD and their families are among the hardest hit, with access to needed services drastically reduced. In fact, 62 percent of caregivers reported a decrease in services for their family member with a disability. Meanwhile, budget proposals in Congress threaten to dismantle Medicaid, making it even harder for people with IDD and their families to achieve.

The Arc, the nation’s largest and oldest human rights organization for the IDD community serving more than a million individuals and their families, conducted a national survey of nearly 5,000 respondents on educational, housing, employment and support needs. The results of this landmark survey are being released in a report today, “Still in the Shadows with Their Future Uncertain.”

According to the FINDS survey, one-third of parents and caregivers (potentially 1 million families) reported that they are on waiting lists for government funded services, with the average wait more than five years. The survey also found that the promise of integrated, community-based employment is not being met. In fact, 85 percent of families reported that their adult family members with IDD are not employed at all. Opportunities for inclusive education, a pre-requisite for employment, are also not being met. Too few students are completing high school – in fact, 52 percent of families reported that their family member with IDD left school without receiving a high school diploma.

“People with IDD have a fundamental moral and civil right to be fully included in all aspects of society. Every day, The Arc promotes and protects the human rights of people with IDD and actively supports their full inclusion and participation in the community throughout their lifetime,” says Peter V. Berns, chief executive officer of The Arc and newly appointed member of President Barack Obama’s Committee for People with Intellectual Disabilities (May 2011). “Although we have made some progress as a nation over the last 50 years, our nation has an obligation to do much more.”

“Yet we are on the brink of taking giant steps backward, and the future is uncertain for these individuals and their families. The vast majority of individuals with IDD live with their parents. So, when their parents can no longer emotionally or financially support them, who will? Without any concrete measures to protect these individuals and proposals to end Medicaid as we know it on the table in Washington, we have a train wreck waiting to happen.”

FINDS found more than 75 percent of families report problems accessing non-institutional community care, trained reliable homecare providers, services and resources. Families are shouldering tremendous financial strain as they’ve had to assume the financial and day-to-day support of their loved ones; many have even had to quit their jobs to stay home and provide care.

FINDS also revealed:

  • 1 out of 5 families (20 percent) report that someone in the family had to quit a job to stay at home and support the needs of a family member.
  • More than 80 percent of families reported not having enough retirement savings for their future as a result of using personal funds to compensate for the lack of services available to their loved ones.
  • 62 percent of parents and caregivers don’t have a plan for where the person they support will live when the parent/caregiver gets older.

As a result of the report, The Arc is calling for more activism by people with IDD and their families, launching a new effort to organize 1 million people to come out of the shadows and make their needs and concerns an issue in the 2012 elections.

To raise awareness surrounding the barriers those with IDD face and how the organization can help individuals and families fully participate in society, The Arc has partnered with Lauren Potter, star of the hit FOX show “Glee.” As a successful actress with Down syndrome who is achieving her dreams, Lauren represents the spirit of The Arc’s work. Today, The Arc and Potter will kick off a public service announcement television campaign.

“I became involved with The Arc when I got the Image and Inclusion award last year. I am happy to be able to help portray a positive image of people with intellectual and developmental disabilities. I’m glad the Arc works to protect human rights of children and adults with intellectual and developmental disabilities,” says Potter.

The Arc “Achieve with Us” Contest
To encourage people with IDD to share their stories of achievement, The Arc is conducting a national contest via their Facebook fan page. Starting today until July 14, entrants can share a story and a photo highlighting the accomplishments of an individual with IDD for the chance to receive a trip for two to Washington, DC. For more information about the “Achieve with Us” contest, please visit www.facebook.com/thearcus.

For more information, or to see additional survey results, please visit thearc.org.

About the FINDS Survey

The web-based FINDS survey was conducted from July 22, 2010, through October 31, 2010. The survey was completed by 4,962 caregivers of people with disabilities. Families from all 50 states and Washington, DC completed the survey. 

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The Arc Begins Affiliation With the U.S. Business Leadership Network to Improve Employment for People With Disabilities

/in /by The Arc

WASHINGTON – Today, The Arc, the largest organization advocating for and serving people with intellectual and developmental disabilities (IDD), is announcing it has become an affiliate of The US Business Leadership Network® (USBLN®). The USBLN seeks to help build workplaces where people with IDD are valued for their talents and contributions.

“It’s partnerships like this one that will help advance employment for people with IDD. The Arc aims to be a resource to businesses large and small that see the value in employing people with all kinds of skill sets so that they can contribute to society in a meaningful way and live a fulfilling life,” said Peter Berns, CEO of The Arc.

The Arc advocates for and serves people with IDD, including Down syndrome, autism, FASD, 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 IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

The Arc’s network will help the USBLN, which is the national disability organization that serves as the collective voice of over 60 Business Leadership Network affiliates across North America and represents over 5,000 employers, advance employment opportunities for people with IDD. In this tough economy, with the national unemployment rate at 9%, people with IDD face huge obstacles to gaining employment in the private sector.  While there are federal programs to help those with IDD find employment within the federal government, in recent years the percentage of federal employees with disabilities has decreased.

The USBLN promotes the business imperative of the preparation and inclusion of people with disabilities in the workplace, marketplace, and supply chain while supporting the development and expansion of its BLN affiliates. The USBLN recognizes and supports best practices in hiring and advancing employees with disabilities, marketing to consumers with disabilities, and encourages contracting with vendors with disabilities through the development and certification of disability-owned business enterprises. To learn more, visit www.usbln.org.

“This is a tremendous opportunity for The Arc to take a step forward in our goal of increasing employment for people with IDD.  We look forward to what this affiliation will bring across the country to the people we serve,” said Berns.

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The Arc Commends the U.S. Senate for Voting Down Disastrous Budget for People With Disabilities

/in /by The Arc

WASHINGTON – Late yesterday, the U.S. Senate voted down a federal spending plan that could have disastrous consequences for people with intellectual and developmental disabilities (IDD). Leading up to the vote, The Arc, the nation’s largest and oldest human services organization for the IDD community serving more than a million people with IDD individuals and their families, opposed this legislation because it would cut $750 billion over 10 years out of Medicaid and end the program as a guaranteed benefit by turning it into a “block grant” that leaves cash-strapped states to fill in the funding gaps with very little oversight.

“The U.S. Senate’s vote put the brakes on a disastrous budget proposal for people with intellectual and developmental disabilities. As Congress and the nation continue to debate how to promote economic recovery and tackle our deficit, it can’t be done on the backs of people with intellectual and developmental disabilities,” said Peter Berns, CEO of The Arc.

The House of Representatives passed this budget plan, known as the Ryan Plan after its author, Congressman Paul Ryan of Wisconsin, in April. The bill includes drastic cuts and changes to:

  • Medicaid: Cuts $750 billion over 10 years and ends Medicaid as a guaranteed benefit by turning it into a “block grant” that leaves cash-strapped states to fill in the funding gaps with very little oversight.
  • Medicare: Replaces Medicare with a voucher program for younger beneficiaries that will certainly provide less than the current system.
  • Discretionary Programs: Eliminates, over time, most federal government programs outside of health care, Social Security, and defense as the cuts are so deep.
  • Health Care Reform: Repeals and defunds the Affordable Care Act.

The $4.3 trillion from all of these cuts would be used to provide $4.2 trillion in tax cuts over 10 years without tackling the nation’s deficit.

For people with IDD, these cuts would have a huge impact on their health and lives. People with IDD could be denied health insurance coverage, home and community based services, supportive housing, job training, education, transportation, and other services. Medicaid currently funds 78% of services for individuals with IDD.

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President Obama Appoints The Arc’s CEO Peter Berns to the President’s Committee for People With Intellectual Disabilities

/in /by The Arc

WASHINGTON – This week, President Barack Obama announced his appointments to the President’s Committee for People with Intellectual Disabilities, which included The Arc’s CEO Peter Berns. This expert group will provide advice and assistance to President Obama and the Secretary of Health and Human Services on a broad range of topics that impact people with intellectual and developmental disabilities (IDD) and their families.

“I’m honored to be a part of this panel advising the Obama Administration on matters critical to the inclusion of people with IDD in their communities. We are facing enormous challenges right now, with federal and state budget crises threatening the services that support people with IDD to thrive in society,” said Berns.

The President’s Committee for People with Intellectual Disabilities is rich with history, dating back to October 1961, when President John F. Kennedy appointed the first panel of this kind to provide the nation with direction for progress in the field of IDD. This was a turning point for the IDD community, as President Kennedy shined a spotlight on the deplorable living conditions in institutions and limited opportunities for people with IDD across the country. The panel produced a report with more than 100 recommendations for research into the causes and prevention of IDD and for expanding opportunities for education, employment and community living and participation. President Kennedy  pushed and signed into law major pieces of legislation that established the foundation for current civil rights protections and programs and services for people with IDD.

By the 1960s, The Arc had emerged as a strong voice advocating for community living and with it the appropriate supports and services people with disabilities need. Today, The Arc is the largest organization advocating for and serving people with IDD, including Down syndrome, autism, FASD, 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 IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.  According to the U.S. Department of Health and Human Services, nearly 30 million, or one in ten families in the United States, are directly affected by a person with intellectual disability at some point in their lifetime.

“The members of this panel will represent millions of Americans and their families at a critical juncture in our efforts to improve the lives of people with  IDD. I’m looking forward to joining this group and bringing with me the powerful, personal stories of the hundreds of thousands of families that are part of The Arc,” said Berns.

A nationally recognized nonprofit sector leader and public interest lawyer, Berns served as the Executive Director of the Maryland Association of Nonprofit Organizations from 1992 to 2008 prior to leading The Arc. In addition, he served as Chief Executive Officer of the Standards for Excellence Institute from 2004 to 2008 where he developed Standards for Excellence: An Ethics and Accountability Code for the Nonprofit Sector. A frequent lecturer, facilitator, consultant, and trainer, he has served as an adjunct faculty member at Johns Hopkins University.  He was named to the Nonprofit Times Power and Influence Top 50 list five times in the past decade. Berns has a B.A. from the University of Pennsylvania, a J.D. from Harvard Law School and an LL.M. from Georgetown University Law Center.