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Did You Achieve New Heights With Us?

The Arc’s 60th National Convention was extremely productive and enjoyable for all attendees. Aside from the educational aspects of the convention, advocates from different corners of the nation were able to come together and get to know each other. By sharing the work they are doing locally and their stories, convention turned out to be a great networking opportunity in addition to a place for individuals to learn and grow together.

From the Board Meeting where important decisions on how to keep The Arc moving forward in 2012 were made, insightful breakout sessions where dozens of topics including standards for excellence in chapters and marketing were discussed, and finally the closing plenary where attendees were given a crash-course in community organizing by Don Elmer, a great deal was accomplished during the last day of Convention.

Excitement is already in the air for 2012’s Convention in Washington DC! The Arc will be taking their message international by partnering with Inclusion International for next year’s convention.

We look forward to hearing how chapters across the country are using new ideas and concepts they took away from convention. We are certain that everyone returned home invigorated and excited to continue working and advocating for individuals with intellectual and developmental disabilities.

Please share with us in the comments any new ideas and programs that this year’s convention inspired!

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New Heights in Denver

Day one of The Arc’s National Convention was extraordinarily successful. This year’s theme “Achieving New Heights” resonated through each session on our agenda. Together we are achieving new heights and finding new and innovative ways to grow as a movement, as an organization, and as individual advocates.

In our first day of activities we had the opportunity to learn from Dr. Temple Grandin about issues facing individuals with autism and how to provide better employment opportunities for them, presented Ashley Wolfe and Ricard E. Hemp well deserved awards for their remarkable work in IDD research, and had the great pleasure of listening to Dr. David Braddock whose work remains a benchmark for advocates to use in their efforts to improve resources for families and their loved ones with IDD. Not to say we didn’t also have fun with events like “Lucky Nights at Lucky Strike” where Lauren Potter from the hit television show “Glee “spent the night bowling and dancing with other attendees.

Check back for more updates from Denver! In the meantime, to see photos from Convention, check out our blog or our Flickr set.

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Temple Grandin, Lauren Potter, and Hope Salazar Share the Stage at The Arc’s National Convention

Denver, CO – 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 will be presented with The Arc’s Image and Inclusion Award by last year’s recipient Lauren Potter, from the hit television program Glee.

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 well respected advocates in the disability community will be on hand, including actress Lauren Potter from Glee, Hope Salazar (wife of U.S. Secretary of the Interior, Ken Salazar), and Dr. David Braddock, the force behind the “State of the States” report on disability issues. Dr. Braddock is a former recipient of The Arc’s Distinguished Research in Intellectual and Developmental Disabilities Award and will be a featured speaker at the convention in addition to participating in a panel discussion with attendees. 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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Serious Star Power Coming to The Arc’s National Convention

You might need sunglasses to attend The Arc’s National Convention in Denver this September. We’re bringing serious star power to the stage with major wattage coming from Hollywood and the intellectual and developmental disability (IDD) sector.

First up is Dr. David Braddock, a major star in the IDD community as head of the Coleman Institute for Cognitive Disabilities and the driving force behind the “State of the States in Developmental Disabilities” which offers insight into crucial public policy issues. Dr. Braddock has just updated this vital report for 2011 and will share his thoughts on where we stand on disability policy today.

Plus, Lauren Potter from the hit TV show GLEE will be on hand to present this year’s Image and Inclusion Award for accurate and positive portrayals of IDD in the media. Lauren, who has Down syndrome, is not only a talented actress but has recently become a very visible spokesperson for the IDD movement. She filmed a compelling PSA for Spread the Word to End the Word campaign against the “r” word with her co-star Jane Lynch and has spoken out against bullying. She was recently in Washington, D.C. with The Arc to help us publicly release the results of the landmark FINDS (Family and Individual Needs for Disability Support) survey and taped a special message to close our newest PSA currently airing across the country.

Finally, Convention attendees will be treated to a keynote presentation from best-selling author and noted animal scientist Dr. Temple Grandin, who has autism. Dr. Grandin’s life and work was the subject of a popular 2010 HBO biopic starring Clarie Danes. The film was highly-praised and recognized with Emmys, Golden Globes and a Peabody Award.

As you can see, it’s an all-star lineup so grab your autograph book and make your reservations now for The Arc’s National Convention September 16-19 in Denver, CO.

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Groundbreaking FINDS Report Picked up by National Media

The Arc recently released the results of its groundbreaking Families and Individual Needs for Disability Support (FINDS) survey and media across the country have been covering the startling statistics. A major goal for this project has been to raise awareness of The Arc and the urgent unmet needs of people with intellectual and developmental disabilities (IDD), and the media has responded by reporting findings from the survey to the general public and highlighting the work of local chapters.

We know that while we have come a long way in promoting and protecting the human rights of people with IDD, there is still much more work to be done. Throughout our efforts to bring about greater awareness, two findings from the survey have struck a nerve – 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. And in this recession, 62 percent of caregivers reported a decrease in services for their family member with a disability, leaving them financially vulnerable.

On the morning of June 14, we released Still in the Shadows with Their Future Uncertain, our report on the FINDS data. The Arc’s CEO Peter V. Berns and Lauren Potter, star of the hit FOX show “Glee,” participated in more than twenty television and radio interviews in top media markets across the nation, including Boston and Greensboro, North Carolina. Peter and Lauren shared the findings of the report and talked about what needs to be done to improve the lives of people with IDD. Following these interviews, The Arc hosted a press conference at the National Press Club to officially unveil the report, and the national newswire Reuters quickly ran a story. Throughout the day, media continued to pick up on the report, interviewing local Arc executive directors and self-advocates, like Jamie Liban and Katherine Olson from The Arc of Virginia who did an in-studio interview at WTVR in Richmond.

The FINDS survey continues to have momentum, as Health & Home Report, one of the longest running syndicated video magazines on television, will begin airing on July 1st one of the television interviews with Peter and Lauren. Health & Home Report is hosted by an award winning reporter and anchor, Laura DeAngelis, and has gained a loyal following because of its useful consumer tips and interesting stories. The show is distributed to 20 broadcast stations and 91 cable systems across the country, reaching an audience between 3 to 4 million.

We encourage you to read the FINDS survey report and spread the word about The Arc’s call-to-action to motivate 1 million Americans to join the movement for people with IDD. Use this information to make the case to everyone you know that more needs to be done to help people with IDD be fully included and participate in the community throughout their lifetimes. Build on the publicity generated by media coverage of the report and share this blog with your networks. Thank you!

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

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

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

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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Are You Coming to Denver for The Arc’s National Convention?

Dr. Temple Grandin

Dr. Temple Grandin

Registration is now open for The Arc’s 2011 National Convention in Denver, Colorado, September 16-19. You should join us this year. It’s simply the biggest and best opportunity to connect with others in the intellectual and developmental disability community such as members of The Arc, chapter staff and volunteers, professionals and experts in the field plus individuals with IDD and their families.

This year, we’ll be Achieving New Heights with special appearances from Dr. David Braddock, the force behind the “State of the States in Developmental Disabilities” assessment of state performance on issues important to the IDD community and Dr. Temple Grandin, the noted scientist and subject of the award-winning biopic Temple Grandin, a film about her accomplishments and living with autism.

We have a special treat for those of you who attended last year’s Convention. Actress Lauren Potter from Glee, who stole the show along with her co-star Robin Trocki in Orlando, returns this year. Lauren, who has Down syndrome, was a delight at last year’s event, meeting and greeting fans for hours.

In addition to the roundup of informative and enlightening sessions covering topics such as advocacy, leadership, innovation, and public policy, we’re bringing back the popular Exchange – a roundtable discussion group. And, we’re turning the Exhibit Hall into a dynamic Marketplace where you can find out more about programs, services and products designed especially for you. Look for Entrepreneur Alley, where budding businesspeople with IDD can showcase their entrepreneurial spirit.

Register now before August 5 for discounted registration and room rates at the Sheraton Denver Downtown.

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Glee Star Lauren Potter Signs on to Appear for The Arc

Lauren PotterLauren Potter of Glee and her mother Robin Sinkhorn will join The Arc on June 14 at the National Press Club in Washington, D.C. as we reveal key findings from our FINDS study to the media. This landmark study surveyed the true circumstances and needs of more than 5,000 individuals with intellectual and developmental disabilities, their families and caregivers and the findings will point us in the right direction to make substantial improvements in the lives of people with IDD through advocacy for changes in public policy and direct supports and services.

Lauren has graciously agreed to be at the press conference on June 14, but will also appear in 60-second PSAs which will be distributed in many television markets in May. Lauren and her Glee co-star, Robin Trocki attended The Arc’s National Convention in Orlando, Florida in November 2010 to receive our inaugural Image and Inclusion Award for positive and accurate portrayals of people with IDD in the performing arts. We’re thrilled that she wants to continue a relationship with The Arc.

You may have seen or heard of Lauren recently speaking out against the bullying of children with special needs on Capitol Hill last week and appearing with her mother in‘s  public service announcement “Disable Bullying.” Lauren is an incredible self-advocate who embodies the spirit of The Arc’s new tagline “Achieve with us.” Those of us who had the pleasure to meet her at The Arc’s 2010 convention can assure you that she is everything she seems to be – being a glamorous Hollywood actress doesn’t stop her from being a sweet, caring, genuine young lady. She has achieved much in her young life and is an inspiration to others to do the same.