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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 I/DD 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 I/DD, their family members and caregivers covering a host of issues from education to housing to planning for the future and discovered that many with I/DD 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 I/DD 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 I/DD 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 I/DD who are 18 or older, their parents, guardians, caregivers or friends or from the parents or guardians of children under 18 who have I/DD.
  • 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 I/DD 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 I/DD 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 I/DD 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 I/DD 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 I/DD 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 I/DD 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.

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The Arc Launches a New Brand Identity

The Arc is proud to unveil a new brand identity! Starting here, starting now, you’ll find a dynamic new look for our blog, Website and publications. And along with that comes a comprehensive new brand identity which will serve to unite our chapters across the country under the banner “Achieve With Us.” It’s at once an invitation and a command, as it represents our movement’s determination to achieve even more in terms of participation, inclusion, acceptance and respect for people with I/DD in the years to come. In the logo’s design, you’ll see the energy and determination The Arc brings to supporting and embracing people with I/DD and their families across their lifetimes and across many diagnoses. You’ll notice a bold color combination of orange and yellow chosen specifically because it is unique in the realm of nonprofit organizations, and can be exclusively associated with The Arc much like a specific shade of pink is associated with breast cancer awareness.

Together, the elements of the brand represent a strong, energetic organization working to provide opportunity for people with I/DD; opportunity for hope, opportunity for growth and opportunity for change. We know a thing or two about change as we have been on the front lines of a movement that has ushered in dramatic changes in the law, in schools, in health care, in communities and often on a very personal level in individual’s lives. Check out this short video about The Arc and stay tuned for some compelling stories of individuals and families touched by The Arc as we introduce you to The Hage’s tomorrow, Adrian Forsythe on Thursday and Sam Jenkins on Friday. We think you’ll want to hear what they have to say.

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Who Decides Essential Care?

The health care reform law provides categories of care that must be provided for customers of the health-insurance exchanges that are launching in 2014. An article in today’s Wall Street Journal, “Defining Essential Care,” points out that “The next big issue for the federal health law as it moves toward implementation is how regulators will define so-called essential benefits—the basic medical services that health plans must cover under the law.” So the details are left up to regulators who are now starting to develop the rules on what is an “essential” health care service and what is not.

Habilitative services, used by such children with autism and other developmental disabilities, have become a particularly contentious point in the debate. The Arc’s Marty Ford provides an example of the difference between rehabilitative and habilitative services. (Read Marty’s prior testimony on the importance of defining habilitation as an essential service.)

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Home Is in the Community

Most people with I/DD share the dream of living in the community in a home of their own. For some, that dream may become a reality.

Earlier this week, Health and Human Services (HHS) Secretary Kathleen Sebelius announced that the federal government will dedicate billions of dollars to help individuals with disabilities access care in the community as opposed to institutions.

“There is more evidence than ever that people who need long-term care prefer to live in their own homes and communities whenever possible,” said Donald Berwick, administrator of the Centers for Medicare and Medicaid Services. “To restrict these individuals to institutions where even the simplest decisions of the day such as when to get up, what to eat and when to sleep are made by someone else must no longer be the norm.”

HHS is also proposing new rules to allow states to access additional federal Medicaid matching funds if they encourage individuals to live in a community setting, as opposed to a nursing home or other institutional setting.

Thirteen states are slated to receive about $45 million for demonstration grants this year, with $621 million budgeted through 2016.   Federal officials are awarding $621 million over the next five years to expand the Money Follows the Person to help people with disabilities who are living in institutions transition into the community with services and supports programs.

The new grants will have an impact on 13,000 people in Colorado, Florida, Idaho, Maine, Massachusetts, Minnesota, Mississippi, Nevada, New Mexico, Rhode Island, Tennessee, Vermont, and West Virginia.

The Arc believes that adults with I/DD should have the opportunity to lead lives of their own choosing, reside in the community, and live independently with ready access to whatever services and supports they need to be included and participate as full members of the community.