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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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Achieve With Us and See Yourself in ABILITY Magazine

The Arc recently kicked off our Achieve with us contest inviting people with intellectual and developmental disabilities to share their inspirational stories of achievement for a chance to win a trip to Washington, D.C. Now, we’ve sweetened the pot by partnering with ABILITY Magazine, the leading source for information on health, disability and human potential. This award-winning publication has provided new insights into individual levels of ability for nearly 20 years and they want to feature the winning entry in The Arc’s Achieve with us contest in an upcoming issue.

So if you or someone you know has a winning story to share, visit www.facebook.com/thearcus and enter today for your chance to win a 2-day, expenses paid trip to the nation’s capital and be featured in the pages of ABILITY Magazine. Plus, they’re kicking in a free one-year subscription to the magazine for the winner along with 25 complimentary copies of an issue to share with friends and family. Enter NOW until July 14 then encourage everyone you know to vote for your story between July 15 and August 15 to win! Who knows, your smiling face could end up in the pages of ABILITY Magazine!

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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 Survey Shows Urgent Unmet Needs for Disability Support

The Arc recently had the opportunity to measure the urgent, unmet needs of individuals and families living with IDD and find out where our society is succeeding in offering them support and where we’re falling short. In conjunction with researchers at the University of Minnesota, we conducted an unprecedented survey of more than 5000 individuals with IDD, their family members and caregivers covering a host of issues from education to housing to planning for the future and discovered that many with IDD are unnecessarily living in the shadows of society for lack of support to meet their most basic needs.

This week, we released the top findings from that survey in a publication called Still in the Shadows with Their Future Uncertain and outlined the steps we need to take as individuals, as families, as advocates and as a country to address the most pressing needs. Here are just a few of the most dramatic findings from the survey that should inspire us to action.

  • 62% of caregivers report that the level of services for their family member with a mild or moderate disability is decreasing; 70% of families with severe disabilities report a decrease in services.
  • 72% of family respondents provide direct financial support to their family member with disabilities and 52% of families are paying for care out of their own income.
  • More than 80% 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 one.

We invite you to read the full report available now and join us in our movement through the call to action outlined in the report. Or, find out more about how you can get involved with The Arc to help bring about positive change, offer opportunity and foster hope for people with IDD everywhere.

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Achieve With Us and Win a Trip to Washington, DC

The Arc works on a daily basis to empower people with intellectual and developmental disabilities to achieve full and satisfying lives. But its individuals like you who actually do all of the achieving! So, to put the spotlight on you and celebrate your achievements, we launched a contest to identify the amazing achievements of people with IDD across the county.

Enter The Arc’s Achieve with us contest between now and July 14 for a chance to win a trip to Washington D.C. to visit your representatives in Congress and The Arc’s national office on a 2-day, expenses paid trip simply for sharing your story of achievement with The Arc. So if you, or someone you know who has an intellectual or developmental disability has a story to share. Then be sure to encourage everyone you know to vote for your story between July 15 and August 15 for your chance to win!

Here’s how to Achieve with us!

  • Write a short (500 words or less) narrative/essay telling us your story of achievement and submit it along with a photo at www.facebook.com/thearcus between June 14-July 14. (Photo not required by encouraged). Entries can come from individuals with IDD who are 18 or older, their parents, guardians, caregivers or friends or from the parents or guardians of children under 18 who have IDD.
  • Spread the word and encourage everyone you know to view your entry and “vote” for you between July 15-August 15.
  • If you win, you’ll hear from us after August 15 to make arrangements for you and a guest or caregiver to come to Washington, D.C. before December 20 and share your story with The Arc and elected officials on Capitol Hill. Check out complete contest details at www.facebook.com/thearcus.

Send in your story and tell us about your achievements on Facebook today. Then be sure to get out the vote starting July 15 and you could win!

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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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Sad Night for Glee Fans Makes The Arc Smile

Warning: this post contains plot spoilers from last night’s episode.

Robin Trocki speaking at The Arc's 2010 National ConventionFans of the hit Fox TV show Glee were given an emotional episode last night as Jane Lynch’s character, Sue Sylvester, dealt with the shocking death of her sister Jean, played by Robin Trocki. Jane talked to EW.com about how tough it was to film the funeral scenes since she knew it meant the end of an enjoyable working relationship with Robin. Those of you who attended The Arc’s National Convention in Orlando last year may have had the opportunity to meet Robin, who has Down syndrome, along with her Glee co-star Lauren Potter as they accepted The Arc’s inaugural Image and Inclusion Award for positive and accurate portrayals of people with intellectual and developmental disabilities in the media. If you did, we’re sure you share Jane’s sentiment as it was clear that Robin was just as friendly and kind in real life as the character she portrays.

In her interview about the episode, Jane Lynch noted that people with Down syndrome can have shorter life expectancies than the average American due to health issues associated with their disability. However, with advances in medical care, some of those issues are not as life-threatening as they once were. Jane also spoke to the unique sibling relationship between the characters that many people who have a brother or sister with IDD will instantly recognize. The Arc applauds the creators and producers of Glee for creating the characters of Jean and Becky (Lauren Potter) and giving them such rich lives complete with challenges and achievements, friends and family, joy and sorrow…included, participating and contributing just like everyone else. That makes us smile.

To Jean – goodbye, we’ll miss you. And to Robin – thanks!

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The Arc Calls Out LeBron James for Offensive Language

On Friday night, at a post-playoff game press conference, LeBron James used an offensive word to people with intellectual and developmental disabilities and their families. The video of his comment was posted widely online, and quickly caught the attention of the media and The Arc’s national office. The Arc’s CEO, Peter Berns, released this comment to the media:

“LeBron James should apologize immediately. No matter the context, this language is very offensive to people with intellectual and developmental disabilities and their families, and an athlete admired by kids everywhere should recognize the power of his actions and words.”

LeBron James began his next press conference with an apology.

We want to hear your take on this issue – when sports figures or celebrities use language that some find offensive, do they have a responsibility to apologize?

Let us know in the comments.

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April = Autism Awareness

Autism Awareness Month is a time for learning about autism and introducing others to new ideas as well as a celebration of individuals on the autism spectrum. It’s also the perfect time to discover Autism NOW’s new website.

Autism NOW is a national initiative of The Arc funded by a grant from the Administration on Developmental Disabilities charged with becoming the nation’s source for resources and information on community-based solutions for individuals with autism, other developmental disabilities and their families. One of those topline resources is a series of webinars about autism spectrum disorders (ASD), early detection and intervention, and organizations and activities supporting acceptance and celebration.

Sign up for a free session held every Tuesday and Thursday from 2:00 p.m. to 3:00 p.m. (EST) throughout Autism Awareness Month. Designed for self-advocates, families, professionals, and the general public, these webinars encompass a wide variety of topics and practices in the area of autism spectrum disorders (ASD) and developmental disabilities. Space is limited and we’re sure you won’t want to miss these opportunities.

Upcoming topics will focus on:

  • An overview from National Disability Rights Network – what you need to know
  • Health Insurance Options for Children with IDD or on the Spectrum
  • An overview of legal advocacy at federal level based on state wide development disability Council expertise (NACDD)
  • Learn about Rest Assured, a new assistive technology that can change the face of care and promote independent living

Check out the full list of available Webinars and sign up now at www.autismnow.org. While you’re there, take some time to explore the new website then spread some awareness to the rest of the world. You can like us on Facebook, follow us on Twitter, read our latest news and share our URL with everyone you know. Together we can raise awareness for autism for April and beyond!

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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 www.abilitypath.org‘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.