by Mary Durheim
To all my friends and colleagues in the world of disability—this is a National Call for Action!
Those of you who know me know that I do not Tweet, seldom correspond via Facebook, avoid blogs, and never participate in chat rooms. The mere fact that I am writing this blog posting is a sure sign that we who are touched by disability—either as a person with a disability, or as that person’s parent(s), sibling(s), relative(s) or friend(s)—are facing something important.
I’m writing to tell you of a national challenge with potentially devastating consequences for millions of Americans with physical and mental disabilities. I’m writing to ask for your help!
I write specifically on behalf of CHADD’s National Resource Center on ADHD (NRC), but this issue directly impacts millions of people with disabilities and the organizations that are usually the only voice for individuals and families like ours.
For Fiscal Year 2012, the National Center on Birth Defects and Developmental Disabilities (NCBDDD) at the Centers for Disease Control and Prevention (CDC) is planning to eliminate specific funding for programs that support people with disabilities such as ADHD, spina bifida, muscular dystrophy, limb loss, and paralysis.
Instead of sharing the burden of decreased funding among all of the disability programs it currently supports, government bureaucrats have decided to play a game of winners and losers. In this game, some programs or conditions will continue to be funded at current or even higher (!) levels, while others will simply not be funded at all.
Does that seem fair? Does that seem right? If there’s not enough stew in the dinner pot, is any mother going to feed two children their full portion and tell the third child, “There’s none for you”? Of course not! Everyone should still have a place at the table and the burden of less should be shared by all!
Instead of sharing the burden in these tough economic times, the bureaucrats call their plan “consolidation.” But to us, it looks more like “elimination.” Over the past few months, a coalition of disability organizations has met numerous times with CDC officials to learn more about what this “consolidation” means. Like many of their colleagues, CHADD representatives came away from these meetings wondering where ADHD fits in.
NCBDDD and ADHD
Established by an Act of Congress in 2000 (P.L. 106-310), the NCBDDD impacts the health of millions of our nation’s most vulnerable citizens: infants and children, people with blood disorder, and people with disabilities. NCBDDD is the only CDC center whose mission focuses on these populations. (In FY2010, NCBDDD was funded at $143.6 million and at $136.1 million in FY 2011, a decrease of 5.25%, while the National Resource Center on ADHD had a decrease in funding of 7.16% during the same period).
Consolidation of programs or elimination of the NCBDDD disability division would be disastrous.
For families dealing with ADHD, these changes would continue to seriously jeopardize the funding base that supports CHADD’s National Resource Center on ADHD (NRC). Think back to when you, your child, or family member was first diagnosed. Where did you go to find reliable information? Where will you go in the future to stay up to date with the most current research and appropriate interventions?
I still painfully remember when my son received his diagnosis, including but not limited to ADHD. I was scared, had little to no information, and had no one to talk to. Don’t you remember the day you received the “diagnosis”? Yes, there’s a lot of information online, but not all of it is reliable or unbiased.
In addition to providing only science-based information, the NRC is the only resource center that has trained specialists that people can actually talk with. Elimination of public funding for the NRC would essentially destroy much of the progress that has been made over the past ten years.
NCBDDD and NRC Successes
It is currently estimated that one in 33 babies in the United States is born with a birth defect and approximately 13% of children have a developmental disability. The NCBDDD funds surveillance, research and prevention activities aimed at helping us track, understand, and ultimately prevent these disorders. The success of NCBDDD programs has contributed to a 26-36% decline in neural tube defects, as well as significant advances in the identification of preventable risk factors for birth defects and improved screenings.
As for ADHD, since the NRC opened its doors in 2003, trained health information specialists have responded to over 27,000 individuals seeking information, guidance, or sometimes just a listening ear. And then there are the millions of visits to the NRC web site; the special projects reaching out to African Americans and Spanish speaking persons; the monthly Ask the Expert chats; the newsletters; the information sheets… the list goes on!
Business in Washington, DC, is and always has been centered on party politics. My call for action to maintain the current structure and funding of the NCBDDD, its disability divisions, and especially funding for the NRC, has nothing to do with whether we are Republicans, Democrats, Independents, or however we may classify ourselves. It has everything to do with the lives of our children, our friends, ourselves. It is about our future and those who will be born in the future and the quality of life future generations of people with ADHD or other disabilities will have.
We urge you to become involved and let your voices be heard. Help us to save not only the National Resource Center on ADHD but also the NCBDDD disability division.
Yes, these times are tough. But certainly no one—not the President, not Republicans or Democrats nor leaders in either the House or the Senate—wants to be known as the ones who undid a decade of work done through CDC that positively impacted the lives of people with ADHD and other disabilities.
How You Can Help
In the coming days, while Congress is in recess and our senators and representatives are in their home states and districts, we will be asking you to contact these elected officials and let your voice be heard. CHADD will provide you with the facts on the accomplishments of the NRC and NCBDDD.
We will post sample letters for you to assist in communicating with your representatives. We will give you tips on how to tell your story—because nothing has an impact like the power of a personal story! We will ask you to make sure that your elected officials know how important it was—and is—to have access to solid, science-based information that has the ability to change lives and help people with ADHD reach their full potential.
Congress must hear these stories—by the thousands—if we are to continue to make progress.
Thank you… and stay tuned!
Mary Durheim
Mary Durheim is a past president of CHADD and one of the founders of CHADD’s Parent to Parent program. An educational consultant, she is active in numerous county and state interagency organizations as a trained mediator, Section 504 hearing officer, and behavior strategist. Durheim is the mother of two adult children with ADHD.
