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Another Perspective on Why FINDS Matters: On the Front Lines

As 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!

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Think Before You Drink

The Arc has a strong history and deep roots in the prevention of intellectual and developmental disabilities (I/DD), especially when it comes to Fetal Alcohol Spectrum Disorder (or FASD), so I was thrilled to see my friend and colleague’s son in this week’s issue of PEOPLE Magazine (Check out the section called “Heroes Among Us”). Dillon Ohlemiller is 18 years old and the adopted son of Melinda Ohlemiller, a staunch advocate for people with FASD who worked for St. Louis Arc for 17 years. She knows first-hand the ins and outs of raising a child with an FASD, and the importance of early detection and providing intervention. That’s why The Arc called on her when we secured funding from the Centers for Disease Control and Prevention to write a curriculum educating others about the secondary disabilities of FASD and how to prevent them. Melinda and I worked together on this project back in the early 2000’s and today are both members of SAMHSA’s (Substance Abuse and Mental Health Services Administration) Expert panel on FASD.

Dillon is a shining example of how early supports and services can make the defining difference in the life of someone with an FASD. He has received support from the St. Louis Arc since he was 8 months old (and is currently in their summer program). At that time, The Arc had a collaborative arrangement with Our Little Haven (the agency featured in the PEOPLE article) to provide intervention and therapy services during Dillon’s early years, and the family also received respite and summer services throughout his childhood and adolescence.

With all The Arc and many other organizations, like SAMHSA and CDC have done in the area of education, some people still don’t realize that FASD is 100 percent preventable. Abstaining from alcohol during pregnancy is the surefire way to prevent a child from having an FASD. Thanks to families like The Ohlemiller’s who openly share their own story, The Arc’s “Think Before You Drink” message is finally getting the attention it deserves!

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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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Disability Policy Seminar: Speaking Truth to Power

The 2011 Disability Policy Seminar (DPS) – Cultivating New Champions on Capitol Hill – educated and empowered attendees to fight for our issues on Capitol Hill in mid-February.

Attendees were emboldened and inspired at the gathering, especially with the awarding of the Distinguished Leadership in Disability Policy Award to the Honorable Barbara Mikulski (D-MD), United States Senate. The award was presented to Sen. Mikulski by Betty Williams, President, Self Advocates Becoming Empowered.

Sen. Mikulski told a cheering audience of hundreds of advocates: “We all have to stand up together for the disability advocacy community adding that the Distinguished Leadership in Disability Policy Award is “a challenge for the future.”

Peter V. Berns, CEO of The Arc said “we are honoring Sen. Mikulski as a long-standing champion of disabilities issues and for her outstanding role in the passage of Rosa’s Law which is a great step forward in full inclusion.” Rosa’s Law is legislation that substitutes the term “intellectual disabilities” for the term “mental retardation” in many federal laws.

The stakes are high this year with disability programs facing serious budgetary and political challenges. This year’s record number of participants was spurred to action in this current climate and was briefed on the ‘hot’ issues facing people with disabilities, including the Affordable Care Act, Developmental Disabilities Act, Employment, Housing, Medicaid/Medicare and more.

Colleagues and friends gathered to honor and celebrate the career of Paul Marchand, who for 38 years has been one of the most ardent and successful disability policy advocates working on behalf of The Arc, United Cerebral Palsy and the entire intellectual and developmental disability community. The event kicked-off The Paul Marchand Internship Fund to support the next generation of difference-makers in the world of public policy and advocacy for the intellectual and developmental disability community.

The 2011 Disability Policy Seminar was presented by The Arc, United Cerebral Palsy, the American Association on Intellectual and Developmental Disabilities, the Association of University Centers on Disabilities, the National Association of Councils on Developmental Disabilities, and Self Advocates Becoming Empowered.

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Celebrate Paul Marchand

Paul Marchand

For 38 years, Paul Marchand was one of the most ardent and successful disability policy advocates working on behalf of The Arc, United Cerebral Palsy and the entire intellectual and developmental disability community. Upon his retirement in January, it was obvious that our organizations would suffer if we did not immediately cultivate advocates of his caliber to eventually fill his shoes. We also couldn’t imagine letting someone like Paul walk away without doing something significant to celebrate his storied career.

With Paul’s blessing, we created The Paul Marchand Internship Fund to establish a policy fellowship supporting young people pursuing careers in public policy advocacy for people with I/DD. The Fund will help enable future professionals to work at an approved site in Washington, D.C. by offsetting travel expenses, helping with cost-of-living expenses or other means of assistance.

The goal is to raise $50,000 for one or two fellows in 2011. To kick off a campaign for the fellowship fund and to honor Paul in person in the company of his colleagues and friends, there will be a special reception during the annual Disability Policy Seminar in D.C. in which Paul has always played a large role. We invite you to join us Tuesday evening, February 15 in support of The Paul Marchand Internship Fund.