Wednesday, January 30, 2008

Prepare to Make a Difference

Which do you want first – the good news or the bad news?

Let’s get the bad news out of the way. Every indication is that the anti-mental health forces plan to increase their outreach to state and federal policymakers. These forces would like nothing better than to turn back the hands of time in how our country views AD/HD and treats people with the disorder.

Their message? AD/HD does not exist.

But you know better. I know better. And the science shows us that AD/HD is REAL. It also shows that it is highly treatable.

Despite the science, the negative misinformation is detrimental to all the progress we’ve made. The last thing you need is for someone to tell you that AD/HD doesn’t exist. Imagine how much more difficult your life will be if this message resonates.

The good news: Recently CHADD and other leading mental health groups released the State Advocacy Toolkit. (These groups work together under the auspices of the American Academy of Child & Adolescent Psychiatry. The workgroup is chaired by a representative from the National Alliance on Mental Illness.) The toolkit will help you make a positive difference in your state. Before using this helpful resource, be sure to read the letter that was released with it.

Numbers do equal strength, so invite others to get involved. Encourage your friends and family to join CHADD today. Or, better yet, think about buying them a membership. With the forces we’re up against, we’re going to need as many people as we can find.

Let’s get moving!


Friday, January 25, 2008

A New Look for the Public Policy Page

It is my pleasure to alert you to some changes we've made to the Public Policy section of the CHADD Web site. While our work is far from complete, we think you will agree that we're moving in the right direction.

Speaking of moving, that's exactly what we encourage you to do – Get Moving. If you are not already involved, start actively participating in our social movement to help shape the way our society views and treats people affected by AD/HD.

The newly renovated Public Policy section will help you in this endeavor by allowing you to monitor developments, find information (including sample letters) on how to reach out to policymakers, and locate useful information that will assist you in self-advocacy.

Please visit now to get a sneak peek of all of the exciting information and advocacy tips that are yet to come. We look forward to your feedback.

Thank you for making a difference!


Wednesday, January 16, 2008

Helping Students with AD/HD Stay in College

Many students with disabilities, including those with AD/HD, can handle academic expectations, but easily get overwhelmed with a full academic course load. One accommodation to meeting these learning needs is to reduce the number of courses taken. This is particularly true at the college and university level. We know many young adults through CHADD who are successfully passing their college courses, but are taking several years more than the traditional four years to complete their studies and graduate.

Health insurance plans typically allow adult children who are “full-time” students to stay covered under their parents' health insurance plan. In 2006, the state of Maryland enacted a law mandating health insurance coverage for part-time college students with "documented" disabilities. "Part-time" is defined as "at least 7 credit hours per semester." The law covers students in "accredited institutions of higher education."

On January 13, at a meeting in Harrisburg, CHADD Pennsylvania decided to seek legislative sponsorship and enactment of the “Maryland law” in Pennsylvania. We believe that Maryland is the first state in the nation to have this legal requirement. CHADD actively supports this approach to assisting young adults with AD/HD and related disorders who are seeking college and university education.

CHADD supports more comprehensive supports for adults with AD/HD, but this is one realistic, targeted, and reasonable support that should be able to find majority legislator support.

Here is where you will find the text of the Maryland law. First, go to the Maryland General Assembly homepage. Scroll down the page until you find Statutes, Maryland Statutes, Maryland Code Online (on the Michie/Lexis website), Maryland Code, Insurance, Title 15 Health Insurance, Subtitle 4 Eligibility for Coverage, 15-417 Coverage for Part-Time Students with Disabilities (206, chapter 395). The text of the law is also posted on the CHADD Web site.


Friday, January 4, 2008

Youth Involvement

My son, Andrew, is 17 years old. He has special needs. Trying not to be paternalistic, trying to solicit and respect his views as he approaches adulthood, and trying to share whatever lessons I have learned from life, are challenges.

A fundamental role of CHADD is sharing the lived experience of persons with AD/HD and their families with those who make decisions about our lives—medical professionals, educators, health insurance companies, those who work locally/statewide/nationally as legislators and public administrators, and others. The adult consumer perspective is important. The perspective of parents and other caregivers is important. Soliciting and respecting the views of teens and adolescents is a gray area, particularly when those views aren’t shared by the parents. This is such a perplexing challenge for all families. Add some special needs into the equation and it gets even more confusing.

Through the leadership of CHADD volunteers Chris Dendy, Joan Helbing, and the conference program committee, the CHADD annual conference has increased its focus on the needs and issues of teens and adolescents. Chris and her sons have written books about this challenge. Several years ago my Presbyterian church created a slot on our governing board for a high-school-aged representative. CHADD will continue to discuss how to meaningfully include the teen and adolescent perspective in what we do. In addition to governance concerns and public educational and personal development activities, there is a role for teens in developing financial support activities.

On December 30, the Washington Post published an article, “For Modern Kids, 'Philanthropy' Is No Grown-Up Word.” The article started: “In lieu of presents at her 12th birthday party this year, Maddie Freed of Potomac asked her friends to bring money, and she raised $800 for Children's Hospital.” The article went on: “Young children and teenagers across the nation are getting involved in philanthropy more than ever, according to research and nonprofit experts, who credit new technologies with the rise of the trend. As young people increasingly become exposed to and connected with the problems of the world via the Internet and television, experts said, parents are finding new ways to instill in their children the value of giving. At the same time, technology is democratizing philanthropy so giving is not only easier for people of all ages and means, but also trendier. And children are starting to organize at the grass-roots level to give.”

Avery Zuleger of Appleton, Wisconsin, is one such young man. Nine-year-old Avery wants to change the way people view AD/HD, and to do so, he created his own Web site. After he was bullied on a playground, he designed silicone awareness bracelets with the slogan “ADHD Rocks.” He sells these blue-and-white bracelets through his Web site, and is donating all his profits to AD/HD research and CHADD. Avery has received emails from people all over the world, and has addressed two AD/HD functions. At one of these, a conference held last November in his hometown, he spoke before 700 people, sharing the stage with one of the foremost experts on AD/HD, Dr. Russell Barkley. This is a young man on a mission!

As a father I need all the guidance and assistance I can get on how to meaningfully solicit and respect my son’s ideas and views about his life. Involvement in peer groups, church, and civic associations are venues for him to learn how to share his views and to guide his life. As a guy with special needs who has social skills challenges, he needs more learning opportunities. He and the children identified in this blog are being involved. We, as parents, need to be as supportive and understanding as we can. Welcome to 2008.