Professional & Natural Supports

This week, President Bush delivered his proposed budget to the Congress of the United States. The good news for persons with AD/HD and CHADD is that he proposed renewed funding for the National Resource Center on AD/HD (NRC), which is funded by the Centers for Disease Control and Prevention (CDC). [Some bad news will be discussed in a moment.]

Employment Issues Facing Adults with AD/HD

Published research and a survey responded to by almost 1,400 adult members of CHADD who have AD/HD affirm that employment is a major concern. Many adults with AD/HD and other disorders frequently change jobs and never advance in a career ladder as they are moving to another entry-level position.

I am pleased to report that CHADD submitted a grant application to the U.S. Center for Mental Health Services (CMHS), a federal government agency, to be a Consumer-Supporter Technical Assistance Center with a focus on employment for younger adults, including those whose primary language is Spanish.

We have put together a consortium partnership of CHADD, Autism Society of America, Child and Adolescent Bipolar Foundation, and Tourette Syndrome Society in an effort to address a wider continuum of mental disorders in adults (a requirement of the grant). Our strategy would be enhanced by a significant subcontract with the National Latino Behavioral Health Association to work with the Spanish-speaking population. All project materials would also be translated into Spanish. It is a personal priority of mine to increase our involvement with the African-American and Hispanic/Latino communities as we build a social movement to better support persons with AD/HD and their families.

Our project design: placement in the CHADD office of a full-time employment specialist to handle inquiries, modeled on our health information specialists in the NRC. The project would hire an employment specialist to work in two states (a CMHS requirement), to be selected by CMHS, to provide face-to-face supports to groups working in the area of employment supports. The project would have its own dedicated web site.

Now the bad news. President Bush's proposed budget would reduce the CMHS agency budget by $76 million, including elimination of programs to directly support consumers and families, including the Consumer and Consumer-Supporter TA centers. CHADD will be working with sister national mental health associations to restore this funding.

Medication Safety and the FDA

We are all concerned with medication safety. According to the Surgeon General's Report on Mental Health, stimulant medications are highly effective for 75-to-90% of children. But the reverse is that the medication either has no effect or has significant side effects in roughly 10-to-25% of children. Each family must weigh the benefits and risks in making medication decisions. The question of the results of not treating a disorder must also be considered. These decisions must be made given our comfort level and in consultation with prescribing medical professionals.

In my family’s experience, a psychiatrist recommended stimulant medication for our son, Andrew, when he was five-years old. We were not ready to have our five-year-old son on medications. By the time he was seven, with other interventions not working, we tried medications. These have been very effective for Andrew, who is now 16. The published research recommends what researchers call "multimodal treatment." On our NRC web site, we post every Food and Drug Administration (FDA) safety and approval decision related to medications to treat AD/HD, as well as our Professional Advisory Board consensus papers on assessment and treatment.

CHADD is a member of the National Health Council, founded in 1920. Forty-nine voluntary health agencies, including CHADD, are NHC members. Last week the Council held a briefing on Congressional proposals to enhance the safety of medications. At the briefing, we were told that the United States Senate will likely pass FDA legislation this year and that it will include at least four Core Elements. Those elements are:

1. Mandatory Labeling Authority
2. Public registration for clinical trials
3. Public data base for results of clinical trials (includes adverse events)
4. Mandatory post market studies of medications (includes adverse events)

These four items are all intended to enhance the role of the FDA in promoting and ensuring medication safety.

Faith Communities and School Teachers

The response to last week's blog centered on communities of faith not being open to persons with special needs. This is so sad, that God's house may not be open and accepting to those in need. As one person commented, "It is hard to have our kids fit in and be accepted. We struggle with this." While CHADD does not endorse organizations, products, or services, there are faith-based Web sites that offer assistance and networking for persons with special needs. Two of these are www.faithnetnami.org and www.keyministry.org.

One of the comments to my blog last week questioned teacher recognition and accommodations. I suggest you contact our information specialists at our NRC/ADHD and ask your questions. They may be able to provide some useful information.

Together, we can further CHADD's mission to improve the lives of persons with AD/HD and related disorders. Together, we can build a social movement that recognizes and supports persons with AD/HD.

Clarke