Another Great Opportunity to Inspire Others with Your Story!

Take a Survey imageWe’ve all heard it said a picture is worth a thousand words, but what about words themselves? How much is a story worth, what about your own story of advocacy? As it turns out, quite a lot! The stories we share have a way of changing the way we understand our world and help us to reframe our perspective about the good, the bad and the ugly aspects of our lives. They inspire and uplift, make us think beyond our own experiences and challenge us to make changes. One person’s story can create a chain reaction of powerful advocacy at the community, state or even national level.

That’s why The Arc is excited to be working on a project with the Genetic Alliance, the world’s leading nonprofit health advocacy organization that includes a network of more than 1,000 disease-specific advocacy organizations and is the voice of advocacy in genetics. The Genetic Alliance, with input and support from The Arc and Family Voices, recently launched an online questionnaire that asks experienced family advocates to share their advocacy journey, including how they developed certain skills and created opportunities to influence systems. Their experiences will be turned into stories that inspire and encourage others to take action and improve the lives of people with disabilities and their families. The goal is that by collecting these stories into a single publication and identifying the common themes throughout the stories, Moms and Dads, siblings and friends, and people with disabilities themselves can begin to have a better understanding of how to influence their own path in advocacy. The online questionnaire closes on Friday, August 19th. Parents (biological, adoptive, or foster), siblings, grandparents, other relatives, caregivers, and those with a health condition or disability are all welcome to participate. More details about the questionnaire can be found on the survey landing page. This is your chance to inspire others with your own story, and help countless other families benefit from your experiences. So, what are you waiting for?

Check out the survey today!

Image by Yarranz.

Temple Grandin Brings Her Celebrity Status and Autism Advocacy to The Arc’s National Convention

WASHINGTON, DC – Dr. Temple Grandin, whose life and work inspired the award-winning HBO biopic starring Claire Danes, will be the keynote speaker at this year’s national convention of The Arc, the country’s leading and largest organization for people with intellectual and developmental disabilities (I/DD).

Dr. Grandin, who has autism, is one of the top scientists developing groundbreaking methods for more humane handling of livestock.  She is renowned for her design of animal handling facilities – currently, half the cattle in the U.S. and Canada are handled in equipment she designed. Dr. Grandin has also developed animal welfare guidelines for the meat industry and consults with McDonalds, Wendy’s International, Burger King, and other companies on animal welfare. She is a professor and researcher at Colorado State University, and was honored in Time Magazine’s “The 100 Most Influential People in the World.”

At age two, Dr. Grandin was non-verbal, and exhibited all the signs of severe autism. Through intensive teaching and speech therapy, she learned to speak. As a child growing up on an Arizona ranch with her aunt, and with the guidance of a high school science teacher, Dr. Grandin was motivated to pursue a career as a scientist and livestock equipment designer.

“Dr. Grandin’s appearance at The Arc’s national convention is sure to inspire the hundreds of members, staff, volunteers, families and individuals with I/DD that will gather in Denver in September. This convention comes at a critical time in our efforts to reinvigorate our movement and grow The Arc,” said Peter Berns, CEO of The Arc.

In addition to Dr. Grandin, other celebrities in the disability community will be on hand, including actress Lauren Potter from Glee and Dr. David Braddock, the force behind the “State of the States” report on disability issues. The 2011 Convention will take place in Denver, Colorado, September 16 – 18, at the Sheraton Denver Downtown.

The Arc advocates for and serves people with I/DD, including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of over 700 chapters across the country promoting and protecting the human rights of people with I/DD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

The Arc Celebrates the 21st Anniversary of the Americans with Disabilities Act

Washington DC – The Arc of the United States today celebrates the 21st anniversary of the Americans with Disabilities Act (ADA). This landmark civil rights law was created to eliminate discrimination against people based on their disabilities.

“Today serves as a reminder to us of not only how far we have come in the last 21 years, but of how much there is still left to do,” said Peter V. Berns, Chief Executive Officer of The Arc. “The ADA has empowered millions of individuals with disabilities over the last two decades, yet there is still much discrimination facing individuals with intellectual and developmental disabilities. This anniversary should serve as a call to action – our work will not be complete until there is full inclusion and equality for individuals with disabilities.”

The ADA protects the civil rights of individuals with disabilities in employment, state and local government services, privately operated public accommodations (hotels, restaurants, stores, museums, etc.), transportation, and telecommunications. A person with a disability, as defined by the ADA Amendments Act of 2008, is someone who has a physical or mental impairment that substantially limits one or more major bodily functions or major life activities, a person who has a history or record of such impairment, or a person who is regarded as having an impairment.

The ADA’s integration mandate has helped many individuals with intellectual and developmental disabilities (I/DD) leave institutions and move to community based settings. However, there are still many individuals living in nursing homes and other types of institutional settings who could and who want to live in more integrated settings.

The Arc advocates for and serves people with I/DD, including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of over 700 chapters across the country promoting and protecting the human rights of people with I/DD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

Employment Stories Wanted!

The Alliance for Full Participation, an organization of which The Arc is proud to be a founder and partner to help increase employment opportunities for people with intellectual and developmental disabilities (I/DD), is seeking short videos telling stories of integrated employment for people with I/DD. These can be success stories, job searches in progress, or stories about a job that didn’t work out. We are looking for videos and stories from people with intellectual and developmental disabilities; employers; direct support providers; family members; co-workers—all those who have an employment story to share.

How to Share

Keep it simple, short (about 2 minutes) and to the point. Whether you’re using an expensive camera, a smart phone, or something in between to shoot your story, try to keep the camera steady and balanced. Use a tripod if you can. If you don’t have an external microphone, try to have the speaker close to the camera so the audio will be clear.

Include visuals that show your story—you working at your job, looking for a job, the people you work with, etc. Try not to make a “talking head” video that only shows one person talking. Be creative, and most importantly, HAVE FUN! This is your chance to share your story with hundreds, maybe even thousands, of viewers.

A lot of time people want to share a lot of facts in their videos, like where they work, how long they’ve been working somewhere, how many hours they work, and the exact tasks they do. Facts are important, but feelings help make a good story. Make sure you are telling how the employment experience makes you feel.

Once you have created your video, create an email. In the email message, include your name and email address. If you want, you can also include a brief description of the video. Attach your video file to the email and send to: df6w0q165cv4@m.youtube.com

This will automatically upload the video to the AFP YouTube Channel.

NOTE: YOUR VIDEO FILE SIZE MUST BE SMALLER THAN 25MB.

If the video file size is bigger than 25MB, contact Carol Walsh cwalsh@allianceforfullparticipation.org and she will coordinate with you.

The AFP YouTube channel is located at: http://www.youtube.com/user/RealJobsAFP

A national team of reviewers will watch your video and choose several to premiere during the plenary session at the Alliance for Full Participation Summit: Real Jobs—It’s Everyone’s Business, November 17-19, 2011 at the Gaylord National Harbor, in Washington, DC. We will also create a compilation of all the submissions to show at the exhibit hall at the conference. If you would like to attend the Summit, register now here. Early bird rates end July 31.

If you have any questions, please contact Carol Walsh at cwalsh@allianceforfullparticipation.org, www.allianceforfullparticipation.org. Please note The Arc is not collecting these videos and cannot answer any questions. We are helping to spread the word as part of our partnership with the Alliance for Full Participation, so please direct any questions or comments to them. Thanks!

Possible Medicaid Cuts and What You Can Do

Don't Cut Our Lifeline LogoRight now, Congress and the President are debating how to cut federal spending to bring down the deficit. Unfortunately – and almost unbelievably – people with intellectual and developmental disabilities are prime among those who may bear the brunt of many of the proposed funding cuts and policy changes.

There are many proposals being discussed in Washington to balance the budget. What they have in common is that Medicaid spending would need to be dramatically cut in a short period of time. They include:

  • Block Granting Medicaid: This policy, which was passed in the House’s 2012 Budget Resolution, would give states a fixed amount of money for health care and long term services and would likely remove requirements for how the states spend the money. Funding and services could evaporate, as financially strapped states took aim at programs without powerful constituencies and tightened eligibility for other programs.
  • Spending Caps: These would set an overall limit on federal spending that is well below current levels and would likely result in a Medicaid block grant (see above). Both houses of Congress may vote this week on a measure that could ultimately force such drastic cuts to occur.

Cuts to Medicaid are on the table in all of these proposals, directly or indirectly, and that alone requires us to act! Time is short.

What would these cuts mean for people with disabilities? There would be no guarantee of services. People with disabilities could be denied:

  • Health insurance coverage
  • Home and community based services

What can we do?

We expect Congress to vote on legislation to cut the deficit before the end of July, and we don’t know yet what that will mean for Medicaid. Now is the time to tell your Senators and Representative what Medicaid means to you and your loved ones and friends with I/DD, and tell them “Don’t Cut Our Lifeline!”

Please call your Senators and Representatives as soon as possible. Enter your zip code to get their phone numbers.

What should I say?

  • The budget cannot be balanced on the backs of people with intellectual and developmental disabilities.
  • Deep cuts in Medicaid cannot be tolerated – including block grants and spending caps that impact Medicaid.
  • Medicaid and programs that serve low-income people must be exempt from deficit reduction plans.
  • Share your story! There is nothing more powerful than sharing your personal experience, so please tell your elected official about your support service needs.
  • Don’t Cut Our Lifeline!

Don’t Cut Clare’s Lifeline

On Wednesday, July 6th, the O’Brien family from Waycross, Georgia joined The Arc and other families that would be affected by Medicaid cuts in a meeting with key staff at the White House. The purpose of the meeting was for the White House to hear how Medicaid cuts would affect each family’s circumstances as President Obama continues to engage in deficit reduction talks.

Deirdre O’Brien has two children, including her 13-year-old daughter, Clare, who has significant intellectual disabilities. Clare also suffers from abdominal migraines, which are similar to traditional migraines but the pain is in the stomach and causes her to vomit continuously for days. Two years ago, Clare’s migraines became very severe, occurring nearly every two weeks. Her hemoglobin dropped severely, she missed a significant amount of school and her parents missed work to take care of her. During this period, the O’Brien family saw no alternative but for Deirdre to quit her job and stay at home in case her daughter became ill. The state of Georgia recognized Clare’s needs and she was granted a small Medicaid home and community based waiver, which allowed Deirdre to hire staff to help care for her daughter.

“Without Medicaid, our family’s life would revolve around illness, not health and happiness. Clare gets the care she needs from her family and from the staff paid for by Medicaid funds, and I can continue to work. Medicaid is a lifeline for us, and the White House needs to hear our story and the stories of the thousands of families like ours in Georgia,” said Deirdre O’Brien.

Take Action

Find out more on the potential cuts to Medicaid and The Arc’s Don’t Cut Our Lifeline campain. Take action and tell your elected officials “Don’t Cut Our Lifeline!”

About the Video

This video was produced and edited for The Arc by INFOCUS NEWS, a supported employment program for individuals with intellectual and developmental disabilities. The primary goal of “INFOCUS NEWS” is to provide employment for individuals with intellectual and developmental disabilities who have been trained in various aspects of video news production; from writing news scripts, to anchoring/reporting stories, camera operation, video editing, lighting, sound engineering, and studio management.

Don’t Cut Graysen’s Lifeline

On Wednesday, July 6th, the Keaton family from Milton, West Virginia joined The Arc and other families that would be affected by Medicaid cuts in a meeting with key staff at the White House. The purpose of the meeting was for the White House to hear how Medicaid cuts would affect each family’s circumstances as President Obama continues to engage in deficit reduction talks.

Amanda and Greg Keaton are parents of 18-month-old Graysen, who has DiGeorge Syndrome. DiGeorge syndrome (22q11.2 deletion syndrome) is a disorder caused by a defect in chromosome 22, resulting in the poor development of several body systems. Graysen’s main medical conditions include two severe congenital heart defects – Tetralogy of Fallot and Pulmonary Atresia. In addition, Graysen has required a tracheostomy and ventilator support since 8 weeks old. Graysen spent his first six and a half months in the hospital, and his one year anniversary at home was June 21, 2011. In his young life, Graysen has suffered two strokes, undergone three open heart surgeries, a feeding tube placement, multiple heart catheterizations, and he hit the $1 million cap on his mother’s health insurance before he turned four months old. Graysen’s nursing care, specialized pediatric tube feedings, along with other important therapies and preventive medications and vaccines are covered by Medicaid through West Virginia’s Children with Disabilities Community Services Program.

“Drastic cuts in Medicaid would force me to quit my job to take care of Graysen, as I couldn’t afford the nursing care without it. Medicaid is our lifeline, and I’m going to urge the White House to keep the nation’s commitment to provide for the most vulnerable, like my son, so that he can continue to live with us and we can keep our jobs and our home,” said Amanda Keaton.

Take Action

Find out more on the potential cuts to Medicaid and The Arc’s Don’t Cut Our Lifeline campain. Take action and tell your elected officials “Don’t Cut Our Lifeline!”

About the Video

This video was produced and edited for The Arc by INFOCUS NEWS, a supported employment program for individuals with intellectual and developmental disabilities. The primary goal of “INFOCUS NEWS” is to provide employment for individuals with intellectual and developmental disabilities who have been trained in various aspects of video news production; from writing news scripts, to anchoring/reporting stories, camera operation, video editing, lighting, sound engineering, and studio management.

Let the Voting Begin!

Ability Magazine Logo

Sponsored by Ability Magazine

Who will be the winner of The Arc’s Achieve with us contest? That’s up to you.

For the past month, we have been receiving entries from people with intellectual and developmental disabilities competing for a chance to win a trip to Washington, D.C. and have their story of achievement featured in ABILITY Magazine. We’re narrowing the field to a set of 10 finalists – that’s where you come in. Visit www.facebook.com/thearcus between July 15 and August 15 and vote for your favorite story. The Arc will choose the grand prize winner from among the top 10 vote getters.

If you or someone you know entered, plan to vote before August 15. If you don’t have a favorite yet, view all of the inspiring stories of achievement on our Facebook fan page and tell us who should win with your vote! There are 100+ amazing stories and every one of them deserves to be checked out. It may be really difficult to decide a winner. You can get the full contest details and rules at www.facebook.com/thearcus and be sure to encourage everyone you know to vote! Thanks for helping to make this contest a success.

Don’t Cut Bailey’s Lifeline

On Wednesday, July 6th, the Brandt family from Springfield, Virginia joined The Arc and other families that would be affected by Medicaid cuts in a meeting with key staff at the White House. The purpose of the meeting is for the White House to hear how Medicaid cuts would affect each family’s circumstances as President Obama continues to engage in deficit reduction talks.

Carrin and Mitchell Brandt are parents of 10-year-old Bailey, who has an intractable (uncontrolled) seizure disorder, cerebral palsy, a history of aspiration and significant global delays. Bailey needs assistance and support with all daily living and recreational activities, and Medicaid helps pay for it. She has a shunt, a G-tube, and uses a communication device. Bailey has had more than five seizures daily, and Medicaid paid for her brain surgery to remove her left hemisphere for better seizure control. Medicaid has paid for over fifteen seizure medications, one of which was over $1,000 for a one week supply. She has had orthopedic issues, including a hip displacement and a leg length discrepancy. When Bailey grows older, she will need Medicaid for long-term support needs, such as residential and day support.

“If we lost Medicaid, it would jeopardize my husband’s small business, and one of us would have to give up our jobs. Bailey’s life and health could dramatically change, as she wouldn’t be able to participate in our community and continue to grow to be as independent as possible. We don’t want to ever see our daughter living in an institution, but without Medicaid, we don’t know what our future holds,” said Carrin Brandt.

Take Action

Find out more on the potential cuts to Medicaid and The Arc’s Don’t Cut Our Lifeline campain. Take action and tell your elected officials “Don’t Cut Our Lifeline!”

About the Video

This video was produced and edited for The Arc by INFOCUS NEWS, a supported employment program for individuals with intellectual and developmental disabilities. The primary goal of “INFOCUS NEWS” is to provide employment for individuals with intellectual and developmental disabilities who have been trained in various aspects of video news production; from writing news scripts, to anchoring/reporting stories, camera operation, video editing, lighting, sound engineering, and studio management.

Answering the Question: What has Medicaid Done for You?

Javi Guzman

Javi Guzman, age 17, has autism and a debilitating connective tissue disorder called Ehlers – Danlos Syndrome, type 3. He visisted with senior White House officials yesterday to talk about what medicaid cuts would mean to him.

By Linda Guzman
Assistant Director of Operations, The Arc of North Carolina

Riding the metro to the White House today, I had no idea what Javi and I would be in store for. My son Javi Guzman, age 17, has autism and a debilitating connective tissue disorder called Ehlers – Danlos Syndrome, type 3. We were going to the White House to talk to President Obama’s senior staff about how Medicaid has changed both Javi’s and my life.

What probably seemed like a simple question didn’t have a simple answer: “What has Medicaid done for you?” What is more telling is what we wouldn’t have if we didn’t have Medicaid. Without community based waivers, Javi wouldn’t be at home – he would most likely be in an institution to receive the care he needs. I wouldn’t be able to work, pay taxes, and be the citizen and mother that I am. Medicaid is our lifeline. With the services Medicaid provides, not only are Javi’s medical needs taken care of, he is learning important skills that will enable him to have the most independent and productive life possible.

I’m deeply appreciative to all those who to took time to meet with us today. I am especially grateful to Congressman David Price who stepped out of a subcommittee mark-up to listen to Javi’s and my story in the hallway, and even took an extra moment so Javi could get a picture with him.

Today showed me the strength of our voices and our stories. The officials we met with told us, “If Members of Congress could sit down with families like yours, they would stop seeing the world in dollars and cents.”

Its stories like mine and yours that will make our elected officials see things in true light, not just in spread sheets.

Join The Arc’s “Don’t Cut Our Lifeline” campaign today, and make a difference.