Imagine What We Can Do Together

A brother and sister hug

Do you believe that all people, including those with intellectual and developmental disabilities (I/DD) have abilities and value? Do you believe people with I/DD have the right to live and work in communities of their choosing? Have you thought about aligning your group with The Arc as a chapter?

The Arc is the largest community-based organization for people with I/DD, leading a national movement advocating for and supporting families and individuals with I/DD across their lifetimes and across all diagnoses. We believe in self-determination and empowering people with the support they need to make informed decisions and choices about how they live. Do you?

Although we’re a large, national organization with a strong, 60-year history of advocating for people with I/DD, our true strength is found within our network of more than 700 chapters across the country. It is people like you working through local organizations who are on the front lines serving and supporting people with I/DD and their families. How much more could you do with the power of The Arc behind you?

We’d like to find out. The Arc is now actively seeking organizations to join our chapter network and take advantage of benefits such as strong federal advocacy initiatives, organizational support, a bold national identity, discounts on training and events, access to collaborative fundraising projects, a network of experienced executives offering professional support, and other resources to make the work you do a little easier. Find out more at www.thearc.org/become-a-chapter or contact Dee Dee Eberle, Director of Chapter Organizing and Advocacy at Eberle@thearc.org today.

P.S. If becoming a Chapter is not your cup of tea, but you still would like to support The Arc, consider becoming an Organizational Member. Explore the benefits.

Cloud Computing and People with Cognitive Disabilities

Computer Monitor with Sky Blue Screen

I’m here at the University of Colorado in Boulder at a fascinating two-day conference on cloud computing for people with cognitive disabilities. Hosted by the Coleman Institute for Cognitive Disabilities and others, the conference focuses on envisioning a future in which people with intellectual and developmental disabilities (I/DD) use cloud technology to support every day activities. “Cloud computing?” you may ask. What is cloud computing, and what is the relationship to supporting people with I/DD?

Cloud computing is real and is already happening. According to Wikipedia, “Cloud computing is the delivery of computing as a service rather than a product, whereby shared resources, software, and information are provided to computers and other devices as a utility (like the electricity grid) over a network (typically the Internet).” Think of internet-based tools such as Google docs, Picasa photos, on-line education, or paying a speeding ticket online. Online banking. Applications on your cell phone. Remote supports in residential settings that use off-site monitoring. Smart homes. These are all examples of cloud technology.

Families connected to I/DD need to be aware of the impending crisis: there are not enough personal support staff to go around for all of the estimated 8 million people with I/DD, many of whom are living with aging parents. Add to that equation the rising aging population that will be competing for care attendants. The writing is on the wall – there are fewer government resources to pay for traditional support services for people with I/DD as we know them today. As a result, we need to be looking at alternative solutions to support needs now. Developers of cloud technology are working on supports for people with I/DD that include family involvement and partnerships, supported and customized employment, recreation and leisure, remote therapies and counseling, health promotion, fiscal management, and many other daily supports. While the research is largely catching up to this digital revolution, early indications are that cloud technology advances the independence and self determination of people with I/DD. While this technology will never replace the one-on-one supports needed by those with significant support needs, for many others cloud technology represents a new way of achieving personal goals and moving through day to day activities, with less reliance on others.

The Arc’s Research and Innovations Department will be highlighting cloud technology on a regular basis. Good places to get information online are the Global Public Inclusive Infrastructure (GPII), Ablelink Technologies, and the Coleman Institute for Cognitive Disabilities.

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.

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!

Think Before You Drink

People Magazine Cover for July 11, 2011The 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. To learn more see our fact sheet available on www.thearc.org. 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!

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, CO, 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. Check out the full Convention Schedule and find out more about our beautiful host city at www.thearc.org.

Disability Policy Seminar: Speaking Truth to Power

Disability Policy Seminar 2011 Barbara Mikulski Wins Distinguished Leadership in Disability Policy Award

The Distinguished Leadership in Disability Policy Award was awarded to the Honorable Barbara Mikulski, pictured here with The Arc's CEO Peter Berns and SABE's Betty Williams.

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.

Celebrate Paul Marchand

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. Find out more about the Fund and The Disability Policy Seminar at www.disabilitypolicyseminar.org or www.thearc.org.