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.
The U.S. Equal Employment Opportunity Commission is taking up a troubling employer discrimination lawsuit. Jason O’Dell of Maryland applied for work as a lab technician through a major national employment agency. The opportunity seemed promising, but shortly after disclosing his Asperger’s diagnosis, the lawsuit states that Jason was told that the position was “on hold.” But the agency allegedly kept on recruiting to fill the job.
So the federal government stepped in and slapped a lawsuit against the firm, called Randstad. Since this is a huge, national employment agency, The Arc wants to know – has anyone out there had a similar experience with the company? We can’t allow discrimination like this to be tolerated.
Share your story with us in the comments, or email Kristen Bossi at firstname.lastname@example.org.
May marks the official release a new book from Rachel Simon, “The Story of Beautiful Girl.” (Available now on www.amazon.com) Ms. Simon is a frequent speaker at events hosted by Chapters of The Arc, including The Arc of Kentucky’s recent state conference thanks to the popularity of her 2002 memoir, “Riding the Bus with My Sister (2002), which focused on her sister Beth, who has a developmental disability. That book was later turned into a TV movie starring Rosie O’Donnell and Andie McDowell. Some details were changed and fictionalized, but the core messages of Beth’s right to self-determination and the challenges and rewards of the sibling bond were left intact.
In “The Story of Beautiful Girl,” Ms. Simon describes two characters with disabilities, Lynnie and Homan, living in an institution in 1968 who fall in love, escape and have a child that they hide away when the authorities catch up to them and Lynnie is forced back to the institution. The book’s publisher, Grand Central Publishing, is predicting a New York Times Bestseller List level of success for this dramatic tale. It will be interesting to see how readers react to a story that touches on issues of intellectual and developmental disability, institutionalization, abuse, race, love, parenting and communication. Find out more about the author at www.rachelsimon.com.
Did you read it? What did you think?
Usually, you’ll find The Arc, the nation’s leading and largest organization for people with intellectual and developmental disabilities lending a helping hand. But in this case, it’s Sam Jenkins who lends a hand as a motivational speaker for The Arc’s New Jersey chapter leading people with disabilities like himself to become their own advocates. Watch Sam lead a group of eager self-advocates in discovering their inner strengths and speaking up for themselves.
This is the story of Adrian Forsythe, an aspiring actor, college student and confident young man. Adrian also happens to have Down syndrome, but that won’t stop him from achieving his goals thanks to assistance from The Arc, the nation’s leading and largest organization for people with intellectual and developmental disabilities. Watch Adrian navigate campus, classes and relationships just like any typical college student.
This is the story of Annika and Maya Hage. In this compelling video, the girls’ parents describe their initial fears upon learning that their twin daughters would be born with a rare genetic issue leading to fairly profound disabilities as well as the sense of relief and hope they discovered after they discovered The Arc, the nation’s leading and largest organization for people with intellectual and developmental disabilities. We’re sure you’ll enjoy watching the twins thriving as happy, playful children now!
The Arc’s been on a roll this year and everything we’ve accomplished in 2010 has given us momentum in moving full steam ahead in 2011.
Just as we have for the last sixty years, The Arc continues to create opportunity and make incredible things happen. Even in the midst of tough times, we’ve seen our chapters around the country help to create better lives for people with intellectual and developmental disabilities (I/DD).
- Institutions have closed with all the former members now living in the community;
- Children with I/DD are finding support and acceptance in their public schools;
- Young adults with disabilities are realizing their dream of attending community college with their peers;
- Proud employees with disabilities are retiring after years of service in the workplace, and more.
On the national level we’re not only proud of the work of our chapters but we’re glad for some victories of 2010, including the following top five:
- The Arc was on the frontlines to ensure the passage of Rosa’s Law, removing the derogatory term “mental retardation” from federal laws. We were at the table when a coalition of disabilities rights advocates met with the former White House Chief of Staff about the “r-word.”
- The Arc’s advocacy was vital to health care reform – perhaps the most important legislation of our generation. New protections guaranteeing people with disabilities can’t be denied health insurance or have their coverage ended, long-term supports and services and access to quality care are several provisions important to people with I/DD.
- The Arc awarded subgrants to 50 chapters as part of the Walmart Foundation School-to-Community Transition Project. The project aims to increase transition outcomes and to build inclusion and involvement of youth with intellectual and developmental disabilities in independent living, employment, post-secondary education or vocational training, and community, social and civic affairs.
- The Arc received a $1.87 million grant from the Administration on Developmental Disabilities to launch Autism NOW, a national information and resource center on Autism Spectrum Disorder (ASD) and other developmental disabilities. This innovative and dynamic initiative is a much needed resource; it’s especially significant that self-advocates will have a meaningful role in leading, implementing and realizing the goals of Autism NOW.
- Leaders of The Arc were instrumental in the passage of legislation crucial to our community. A Supportive Housing Bill – the Frank Melville Supportive Housing Investment Act – passed both chambers of Congress last week and President Obama is expected to sign it into law soon. The initiative to provide more housing has been a high priority for chapters of The Arc.
As we say goodbye to the old year and ring in the new, here’s a wish from The Arc:
“Here’s to the bright New Year, and a fond farewell to the old; here’s to the things that are yet to come, and to the memories that we hold.” — Author unknown
What are you thankful for this year?
The question is bound to come up as we gather with our family and friends to celebrate Thanksgiving. There are the standard vague answers: health, happiness, loved ones, good food…
This year, however, may we suggest you get a little more specific? Here’s what we at The Arc are thankful for in 2010.
Let’s be thankful for a little girl who inspired a loving brother to take action against the “R” word. Thanks to Rosa Marcellino, who has Down syndrome, her family, a slew of supporters from the intellectual and developmental disability community, and a legislator from Maryland, the insulting and hurtful term “mental retardation” was replaced in many federal laws with the term intellectual disability. It may seem a small victory to replace an inappropriate term buried in the legalese of federal legislation, but as we all know, how we refer to people is often representative of how we treat them.
Let’s be thankful for CLASS. No, it’s not the character trait you wish your brother-in-law had a little more of…it’s the Community Living Assistance Services and Supports Act. This bill amended the Public Health Service Act to help people with functional impairment and their families pay for the services and supports they need to give them maximum functionality and independence.
Let’s be thankful for our health insurance policies. Ok, some of you are giving me weird looks, but hear me out. Thanks to provisions of health care reform legislation, insurance providers will now cover “pre-existing conditions” for children under 19. This means many children with intellectual and developmental disabilities will receive benefits under their parents job-related insurance policies for conditions for which they were previously denied coverage. This will help lift a huge financial burden off the shoulders of families. Although we’re living in a day and age when we should be able to take things like basic health care for granted, we’re just not there yet.
Let us know what you’re thankful for in the comments.