Autism Bill Now Law – Celebrate, but Back to Work!

Thanks to many of you who reached out to your Members of Congress as the clock ticked down on the Combating Autism Act – President Obama signed a three year extension of the law on Friday. Without approval by the House and Senate, and President Obama’s signature, this important law for children on the autism spectrum could have disappeared.

The Combating Autism Act provides funding to educate professionals about proper screening, diagnosis, and intervention for children with autism spectrum disorder and other developmental disabilities. It also funds autism research and surveillance. The Leadership Education in Neurodevelopmental and Related Disabilities (LEND) program is just one of the things that the law supports.

While this is a moment to celebrate our success, our work is far from over. In 2014, Congress will need to revisit this law, and The Arc is committed to pushing for the next version to include services and research across the lifespan.

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.

The Arc Urges White House Senior Advisors to Continue to Support Medicaid

It was an emotional morning as the Keatons from West Virginia, the O’Briens from Georgia, the Rodriguezes from Texas, and the Brandts from Virginia shared their personal stories with Phil Schiliro, Assistant to the President and Special Advisor, John Carson, Deputy Assistant to the President, Jeff Crowley, Senior Advisor on Disability Policy, and Kareem Dale, Special Assistant to the President. What an important opportunity for The Arc to touch the hearts and minds of some of the most powerful people in government yesterday, and to show the faces of Medicaid, a program that is a critical lifeline for families with loved ones with intellectual and developmental disabilities (I/DD). The Arc appreciates the support the Administration has shown for Medicaid and other programs vital to people with I/DD and urges the Administration to continue to champion these programs during the deficit negotiations.

The concern that Medicaid – which millions of people with I/DD rely on for health care and assistance with living in the community – is on the chopping block led us to create the “Don’t Cut Our Lifeline” campaign. In April, the House of Representatives passed a budget that would have disastrous consequences for members of The Arc, and we’ve been asking you to take action and contact your legislators to let them know how important Medicaid is to you and your family. The House plan included deep cuts to Medicaid, changed it into a block grant, and seriously harmed other vital programs. The Arc believes that the budget should not be balanced on the backs of low income people and those with disabilities, and Congress must consider raising revenue and ensuring that wealthy Americans and corporations pay their fair share.

The Arc appreciated the opportunity to meet with these high-level Obama Administration officials and for these families to share their story about how Medicaid has been critical to their daughter or son with I/DD and their entire family. Listening closely to the families’ presentations, the officials thanked them for providing real life examples of the enormous challenges they face on a daily basis, underscoring the importance of the critical public policy decisions that are being debated in our nation’s capitol. The tension in the voices of family members made clear that the budget debate isn’t about numbers, it is about people’s lives.

Without Medicaid, the lives of the Keatons from West Virginia, the O’Briens from Georgia, the Rodriguezes from Texas, and the Brandts from Virginia would be dramatically different. Some of these parents would have to quit their jobs, some would be forced to choose between keeping their loved one at home or moving them into an institution. Some would be forced into bankruptcy and potentially lose their home simply to provide for the health needs of their loved one. This is unacceptable to The Arc, and the White House staff we met with were visibly moved by each of these families.

We know there are millions more families like the Keatons, O’Briens, Rodriquezes, and Brandts across the country. There is still time to make your voices heard too – join our “Don’t Cut Our Lifeline” campaign!

About the Keatons of Milton, West Virginia

Amanda and Greg Keaton are parents of 18-month-old Graysen, who has DiGeorge Syndrome. DiGeorge 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.

About the O’Briens of Waycross, Georgia

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.

About the Rodriguezes of Tomball, Texas

Natalie and Ruben are parents of 31-year-old TJ, who was born with significant intellectual and developmental disabilities. TJ needs assistance with everyday activities like bathing, brushing his teeth, getting dressed in the morning, communicating effectively, walking, and preparing his meals. As he has gotten older, TJ’s mobility challenges have greatly increased along with his medical needs. Medicaid covers TJ’s neurologist, endocrinologist, rehabilitation specialist, occasional home care, speech therapist, orthopedic specialist, primary care, and his prescriptions. In addition, through TJ’s Medicaid Home and Community Services slot, which took nine years to receive, his parents have been able to make modifications to their home that allow TJ to live with them, like ramps and bathroom modifications.

About the Brandts of Springfield, Virginia

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.