Tyler Smothers Is The Arc’s Achieve with us Contest Winner!

Tyler Smothers

Tyler Smothers

Between June and August, The Arc invited people with intellectual and developmental disabilities to share their stories of achievement in an online contest on our Facebook fan page at www.facebook.com/thearcus. More than 25,000 votes were tallied for 119 contestants to narrow the field down to the top 10 finalists in The Arc’s Achieve with us Contest. Then The Arc had the difficult task of determining who would ultimately win the Grand Prize of a trip for two for two days to Washington D.C. to share their story of achievement with The Arc’s National Office and a chance to talk with their representatives on Capitol Hill. Every single story was an inspiration and each contestant should be applauded for their remarkable achievements.

But we did have to choose just one winner, and the winner is Tyler Smothers from Cedar Rapids, Iowa. For four years, Tyler has been the driving…or, rather bicycling…force behind an annual bike riding fundraiser for The Arc of East Central Iowa. Read Tyler’s winning entry here. Because of that achievement we are proud to invite Tyler to Washington, D.C. When we told Tyler he was the Grand Prize winner, he said “This is the most exciting and coolest day ever. I would love to see Mr. Obama and Michelle!” While meeting the President may not be possible (this time), The Arc is arranging a trip to the Capitol for a chance for Tyler to talk to his representatives in Congress in November. ABILITY Magazine will feature Tyler in an upcoming issue and we’ll post news about his trip on the blog in early November, so check back.

Why FINDS Matters – An Addition to Your Advocacy Toolkit

FINDS report coverThe Arc’s amazing network of advocates has been working tirelessly to ensure that Medicaid does not suffer budget cuts with the “Don’t Cut Our Lifeline Campaign.” From the debt ceiling negotiations earlier this summer to current outreach to Members of Congress to ensure that individuals who rely on Medicaid do not lose essential services, our advocates have been busy this summer!

Hearing personal stories from individuals with intellectual and developmental disabilities (I/DD) and their families has helped make Members of Congress stop seeing Medicaid as just another entitlement program and see it as an important lifeline for millions of Americans. While these stories have helped to enlighten elected officials, many still don’t see the true scope of what Medicaid means to families across the country. This is where The Arc’s FINDS (The Family and Individual Needs for Disability Supports) Survey can help.

Have you read the report on The FINDS survey yet? You should. The startling results provide supporting data for the “Don’t Cut Our Lifeline” campaign. With over 5,000 parents, siblings, children, grandparents and relatives of individuals with I/DD surveyed, the results can’t be ignored. Most telling was the insight from caregivers about how they provide for the supports for their loved ones with I/DD:

  • Fifty-two percent of families use Medicaid funds to pay for long term care services and supports, primarily through the Medicaid HCBS Waiver program
  • People with severe I/DD were more likely to have reported getting supports from a family member paid through the HCBS Waiver program (59%), while people with mild I/DD were more likely to have received supports from a family member paid out of personal or family sources (56%), most often the personal income of a parent, family member or other caregiver
  • Nearly two-thirds of family caregivers (62%) are paying for some care out of pocket. Family caregivers struggle to find afterschool care (80%), reliable home care providers (84%) and community-based care (82%)

The challenges facing family caregivers also provide support for the “Don’t Cut Our Lifeline” campaign:

  • Overall, 62% report experiencing decreases in services and 32% were waiting for government funded services, most for more than 5 years
  • More than 40% of family caregivers reported the person with I/DD had unmet support needs during the last year for running errands or seeing a doctor (48%), managing finances (46%), transportation (45%) and household management (41%)

Many of you are living the reality behind these data points. The survey is a powerful tool you can use to get that point across to Members of Congress or others who can help the millions of families and individuals who depend on Medicaid. Find more information about how the FINDS results support the “Don’t Cut Our Lifeline” campaign, then find out more about what you can do to help here.

Who’s a Top NonProfit? The Arc!

The Arc has been chosen as one of the top nonprofits working for people with disabilities by Philanthropedia, a subsidiary of GuideStar, a nonprofit organization working to make you 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.

So what, exactly, does it mean to be “high impact?” The experts at Philanthropedia evaluated each nonprofit based on their ability to carry out their mission, organizational strengths and, most importantly, evidence of the impact they are achieving on behalf of the people and communities they serve. 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.” That means donors and supporters can feel comfortable with The Arc, secure in the knowledge that this organization is adept at channeling that support into activities that truly have a “high impact” on the people they serve.

Philanthropedia, 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.

“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.

Have you considered supporting The Arc? To read more about what experts in the field have to say about us, click on the Expert Reviews section on The Arc’s organization profile. And, check out www.thearc.org for more about what we do. We have been honored by BBB/Wise Giving Alliance and American Institute on Philanthropy and the recently released Charting Impact initiative as well. We’d love for you to join us!

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

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.

Amazing Stories of Achievement: The Arc’s Achieve with us Contest Finalists

The Arc Achieve with us Contest Banner imageThe Arc wrapped up its Achieve with us Contest August 15 with the selection of 10 finalists from 119 entries highlighting stories of achievement from people with intellectual and developmental disabilities. Over the past month, we have tallied more than 25,000 votes on Facebook and we’re ready to choose the grand prize winner from the top 10 vote-getters to win a trip to Washington, D.C. to share their story.

In June and July, we encouraged anyone with an intellectual or developmental disability to share their story on our Facebook fan page at www.facebook.com/thearcus and compete for the grand prize through an online voting process. We’re pleased that the contest generated so many inspirational stories and received so many visitors to view those stories and vote!

The Arc will arrange for the winner and a guest to visit The Arc’s national office and Capitol Hill for two days with a chance to share their story with their representatives in Congress and learn more about self-advocacy. The contest was sponsored by ABILITY Magazine, who will feature the grand prize winner in an upcoming issue of the magazine.

We invite you to check out our 10 finalist’s stories and look for an announcement of the Grand Prize winner in early September. Thank you to everyone who participated in making this contest a success!

Advocacy Does Matter!

Joe Arridy and his Mother image

Joe Arridy and his mother.

If you’re planning on attending The Arc’s National Convention this September, you’ll get to hear firsthand the dramatic story of how The Arc of the Pikes Peak Region along with Bob Perske, David Martinez , fought for and won a pardon for a man with intellectual and developmental disabilities who was wrongly convicted of murder.

On January 7, 2011, seventy-two years and one day after Joe Arridy was wrongly executed, justice was finally served. Thanks to tireless advocacy efforts, years of public awareness campaigns, former Colorado Governor Bill Ritter granted Joe a posthumous pardon. Joe was diagnosed with an intellectual disability and committed to the “Colorado State Home and Training School for Mental Defectives” at the age of 10. The institution determined that Joe had an IQ of 46. While on trial for the murder of the young girl, physiatrists testified that Joe had “the mind of a 6 year old” but that he was not “insane.” Though his attorney worked tirelessly against the highly questionable prosecution, Joe was found guilty and executed.

The Arc of the Pikes Peak Region dedicated itself to clearing Joe’s name. Working with advocates in the community, local attorneys, and even screenwriters to raise awareness of the injustice, the story of Joe Arridy began to spread throughout Colorado. Their dedication paid off. Now those advocates are being honored with the annual Advocacy Matters! Award at The Arc’s National Convention in Denver, CO September 16-19.

More National Convention Awards! Check the full Convention schedule for the dates and times of the awards presentations.

Image and Inclusion Award

Presented to Dr. Temple Grandin for inspiring an award-winning movie with her life and work. “Temple Grandin,” starring Claire Danes has been recognized with Golden Globes, Emmys and most recently a Peabody Award, helping to raise awareness about autism.

Research in Action

Presented to Ashley A. Wolfe for significantly contributing to participatory action research efforts in the I/DD field.

Distinguished Researcher in Intellectual and Developmental Disabilities Award

Presented to Richard E. Hemp for his critical contributions to data on family support and the federal expenditures that support people with I/DD.

Another Perspective on Why FINDS Matters: On the Front Lines

FINDS report coverAs Project & Information Specialist with The Arc, I get the opportunity to hear from people all over the country on a daily basis about the challenges people with intellectual disabilities and developmental disabilities (I/DD) and their families face in their attempt to obtain services and supports for their loved one. For the past 15 years, I have heard from parents, grandparents, siblings, other relatives, friends, professionals and advocates from all walks of life, and the same recurring theme is boiled down into one question: We’ve tried that…NOW WHAT?

These worn-out, desperate individuals have turned everywhere they could think of looking for basic services for their loved one and have either 1) never been able to access them, or 2) the services were recently stopped due to lack of funding. Families often call our office as a last resort, and that’s why we work tirelessly to make sure their voices are heard. In fact, The Arc recently published The FINDS Survey (a report on Family and Individual Needs for Disability Supports) which explains the current challenges families are facing, and gives the individuals with intellectual disabilities and family members themselves the opportunity to share their own dreams and hopes for the future, and clearly state where our nation falls short in providing basic supports and services.

For example, we found that more than 75% of families can’t find afterschool care, non-institutional community services, trained reliable home care providers, summer, residential, respite and other services. This makes it incredibly hard, if not impossible, for families to support their loved one to become as independent as possible in the community. Also of concern, 62% of families report that services are being cut in the community, limiting or eliminating access to community life altogether.

The FINDS Survey validates that although great strides have been made in the areas of education, employment and inclusion in the community, there are still significant ways our country is falling short in providing the tools and resources families need. You can take a stand today! Learn more about The Arc’s call to action in the FINDS report and find out how, together, we can work to achieve better lives for people with intellectual disabilities and their families!

Why FINDS Matters

FINDS report coverOn June 14, 2011 at our press conference announcing the release of our report, Still in the Shadows with Their Future Uncertain, The Arc’s long time friend and colleague, Dr. K. Charlie Lakin, offered the following remarks about the importance of this research. Charlie has now moved on from his position at the University of Minnesota to take the helm at the National Institute on Disability and Rehabilitation Research (NIDRR) of the U.S. Department of Education’s Office of Special Education and Rehabilitation Services. His comments at the press conference are well worth thinking about, and are as follows:

“Over my 25 or so years of association with The Arc as a member of various boards at the local, state and national level and as Chair of the Research Committee, one overarching idea has been that The Arc should always be a leader in the movement for people with intellectual and developmental disabilities (I/DD) – the first and foremost authority on the issues that concern those individuals. And, the first rule of leadership is to always listen carefully to the source of one’s authority. The Arc’s moral authority is derived directly from listening to and reflecting in its actions the will of those in whose name it exists. It is individuals with I/DD and their family members who founded The Arc, who currently sustain The Arc and who are the future of The Arc. They are The Arc.

“In that regard, it was important, even essential that The Arc engaged those primary stakeholders in providing the valuable information contained in the FINDS (Family and Individual Needs for Disability Supports) survey and summary report. . . . Advice is sometimes given that if one is not prepared to deal with the answer, then one shouldn’t ask the question. In asking the questions of this survey The Arc has challenged to respond not only in its advocacy, but also in service delivery. The Arc has committed itself to lead by its own example. It will become an organization to which the sizable majority people with developmental disabilities who want real work can turn to obtain real work. It will be an organization to which the majority of people who want support to live in their own homes or in homes with their family members can turn for in-home support. It will commit itself to divesting of the segregated vocational and congregate residential programs operating under its new, progressive logo. And as it has for 60 years it will continue to take the message of people with disabilities and their families to places of power to assure that the promises made to people with disabilities are promises kept.”

I invite you to dig into the data starting first with the FINDS report, Still in the Shadows with Their Future Uncertain, and then into the technical report and data tables if you are so inclined. Consider what it means for you and the people you care about and consider joining the movement or finding out more about what The Arc is doing for people with I/DD.

Hollywood Needs to Show People with I/DD Some Respect

With social media enabling us to stay connected and engaged with communities around the world, the words of individuals, celebrities, and authors can very quickly be spread and deemed acceptable without question simply because we are on the receiving end of too many messages. And when celebrities and entertainment mediums are the messengers, they often rise to the top of our overloaded brains, even when they disseminate derogatory phrases that offend and belittle members of our society.

Although we have made so much progress in removing the ‘r-word’ from our society, some in Hollywood just don’t seem to get it, as we see in the new Universal Pictures movie “The Change-Up.” The kind of language used is hurtful to so many who sit in the theaters thinking they are in store for entertainment, not insult. Words matter, and the film industry needs to learn that people with intellectual and developmental disabilities and their families find this kind of language to be totally unacceptable.

GQ is another recent offender, with a July 15 article by author John B. Thompson reviewing fashion in the United States titled, “40 Worst-Dressed Cities in America.” The article described Boston, MA as number one saying, “Due to so much local inbreeding, Boston suffers from a kind of Style Down Syndrome, where a little extra ends up ruining everything.” This language has since been removed online, but an explanation from the magazine or apology from the author has not been issued.

The only way to stop offensive language like this is to continue working together to express what these words actually mean. Stand up and be heard! Contact both GQ and Universal Pictures about their offensive comments about individuals with Down syndrome:

This isn’t a question of free speech; this is about respecting people with I/DD and understanding that words are powerful, especially when they are coming from sources that are viewed by millions of people worldwide.

Are You Coming to Denver?

Lucky Strike Lanes

Lucky Strike Lanes

There’s still time to take advantage of early bird rates for The Arc’s National Convention September 16-19 in Denver, CO. Register now and make your reservations at The Sheraton Downtown Denver and get discounted rates saving you hundreds on your trip to the biggest and best opportunity to connect with the intellectual and developmental disability community this year. We’ve extended early registration discounts until August 19 and hotel room discounts are valid until August 14.

We’re expecting a huge crowd for 3 days of informative and inspirational sessions on topics important to people with intellectual and developmental disabilities (I/DD) and those who serve them such as:

The Medicaid Crisis, Waiting Lists, Voting, Protecting Social Security, Supporting Families Holistically, Providing Leadership for a Stable Organization, Special Needs Planning for Parents, Self-Advocacy Initiatives, Social Enterprise, Involving siblings and Affordable Housing.

And, don’t miss The Arc and Sprout National Film Festival Luncheon spotlighting people with I/DD or the spectacular Opening Event hosted by The Arc Thrift Stores and The Arc of Colorado at Lucky Strike! Only a short time left to scoop up early bird rates, so don’t delay. Register now here.

Need help getting to Denver? No problem. Hammer Travel is the official travel sponsor of The Arc’s National Convention offering customized, comprehensive travel arrangements for individuals with intellectual and developmental disabilities and their families. Visit www.hammertravel.org or call 1-877-345-8599.

Special Thanks to our 2011 National Convention Sponsors: AGS, Diversified Nonprofit Services, Essential Learning, Hammer Travel, The HSC Foundation, Irwin Siegel Agency, Inc., Liberty Mutual, Medisked, MetLife, Managance Consulting, Mutual of America, Rest Assured, Simply Home, Tandem Select, Arc Thrift Stores of Colorado and Trips, Inc.