November / December 2004
Volume 22, Number 6

This is the scenario: you run into your elected official at an Aim High event, at a community event, or wherever, and somehow the conversation centers on the issues you face because you have a child with Down syndrome.  What do you say?

    I am certainly not going to tell you what to say.  But don’t stop reading.  Aim High and the Down Syndrome Resource Center (DSRC) are organizations that have pledged that no substantial part of their activities will be attempts to influence legislation or participate in any political campaign.  In other words, as organizations, we have to be careful; but as individual members you can certainly express your opinions and concerns.

    One effective way to communicate with your elected official is to relate, on a very personal level, the challenges your child faces, whether these challenges are related to school, work, independent living, socialization, health care, Medicaid, social security, community acceptance, or whatever.  Talking about your child is relating the issues and is increasing the awareness of your elected official. Somehow, somewhere this will make a difference.

    Another effective way to talk to your elected official is to address and discuss specific issues, such as legislative issues currently under consideration at the local, state, or federal level, or issues based on your elected official’s known points of view or voting record.  This obviously requires some knowledge.  Fortunately the Internet allows us to readily access such information.   For instance: the National Down Syndrome Society website (www.ndss.org, click on “Legislation and News”) provides information on legislation such as the Individuals with Disabilities Education Act (IDEA) and the No Child Left Behind (NCLB) Act.  In addition this site has information/position papers, current legislation in Congress, and voting records of your elected U.S. representatives.  Other organizations, such as The Arc (www.thearc.org) and the American Association on Mental Retardation (www.aamr.org), also have extensive information on their websites, including policy statements and legislative goals for 2004 (soon for 2005).  The Arc’s governmental affairs committee publishes weekly editions of the Capitol Insider and monthly editions of the Washington Watch.  On the state level, the New York State ARC (NYSARC) website (www.nysarc.org, click on “Legislative Issues”) will tell you what is going on in Albany, including legislative alerts, positions, and issues.  And this is, of course, just for starters; there are a large number of other organizations and websites.  The Aim High/DSRC website, (www.downsyndromeresourcecenter.org/links.html) has a list of useful links.  Information on issues at the local level (school district, community) are not necessarily available on-line, and may require networking with other parents (call the DSRC).

    Many people are intimidated talking to their elected officials.  You really shouldn’t be.  You are the expert on the real issues of your child.  Elected officials like to hear about these real issues.  Don’t feel you have to be a legislative expert and that you have to master all facts.  Make an impassioned case for the issues important to you, based on your own experience. Speak from the heart.  Good luck and let News and Notes know about your experiences.