Thursday, December 18, 2008

Organizing a Local Town Hall Meeting to Help the State Legislature

Last week my wife and I attended a town hall meeting in our county organized by three local disability family organizations. The Maryland state legislature convenes in mid-January, and this was an effort to educate both families and public officials at the same time and in the same place.

It was a successful event. Two members of the Maryland State House attended and stayed to listen to the stories. The county executive attended, listened, and was the last speaker. Staff members from the offices of four members of the Maryland legislature attended; one discussed her personal experience as a mother of a child with special needs. A member of the county school board, the county special education director, and several county agency staffers attended.

The meeting was held in a prominent and conveniently located church. Members of the three hosting organizations attended in good numbers. Family members received reminder telephone calls prior to the meeting, encouraging attendance. There were moving personal stories. The organizers served desserts and beverages. They had a printed agenda.

The organizers did not publicize to the community at large, so it was a speaking-to-the-choir experience. As with all CHADD chapters and support groups, the entire program was organized and presented by citizen-volunteers. The presentations frequently were disjointed and common themes (other than we need more money) frequently got lost in the presentation. Two speakers did not show. There was no content takeaway.

So, for anyone planning a local event, I suggest the following:

1. Collaborate with several organizations to co-host.
2. Assertively outreach to your members through personal contact.
3. Publicize the event to the community at large.
4. Select a neutral, prominent, and convenient location.
5. Tell people there will be food.
6. As public officials confirm their attendance, revise the publicity and outreach materials to indicate their attendance.
7. Coordinate, and then develop common themes and messages.
8. Prepare a one-page takeaway of common themes and messages with content that legislators and agency officials will understand and use in their work.
9. Timing is important. Holding an event the month before the legislature convenes is great—close enough, but not too close.

Good luck as you work to inform the public, and its governmental leaders, about AD/HD, related disorders, and the lived experience. Slowly, build a social movement from the neighborhood up.


Wednesday, December 3, 2008

Think About a Special Needs Trust

Ever think about how you will provide for your child with special needs once you are no longer around? Over the Thanksgiving weekend, my wife and I established a special needs trust with our son Andrew, now age 18. I strongly encourage any family with a child who has significant special needs to consider establishing such a trust.

To effectively design and implement such a trust, you need an experienced attorney who specializes in such work. We located such a firm and attorney by word of mouth. We have information on possible legal resources to assist with such trusts on CHADD’s National Resource Center on AD/HD Web site; see Finding an Attorney and also the Other Web Sites section on the main Living with AD/HD page. And there is a national organization that is devoted to this subject, the Special Needs Alliance.

Our resources will go into a special trust, the sole purpose of which is to promote Andrew’s welfare. The trust needs flexibility as circumstances and eligibility and rules governing public assistance programs change. We don't know the circumstances Andrew will face. We don't know if public programs will be helpful or not. The only real concern we have is the need to have a dependable and knowledgeable trustee. Currently we have one—my wife's youngest sister. This is great for now, but Andrew has no brothers or sisters. At some point, health and aging may mean that we will have to find another trustee—younger, healthier, dependable, willing to make all decisions to promote Andrew's welfare, knowledgeable enough to be able to figure out (with legal or advocate assistance) the impact of public program rules and their interplay with the trust resources. This may be difficult.

While with our specialist attorney, Andrew decided that it would be reassuring to him to grant his parents limited power of attorney regarding health decisions and money decisions. Andrew may never need this assistance. But if a crisis occurs and Andrew needs our assistance, we are legally authorized to help. This requires a trusting relationship and careful, deliberate communication between the family members. Andrew and we feel more assured with this authority in place.

Good wishes as you plan your future.