Saturday, April 25, 2009

Today the Board of our local Down Syndrome group met with our congressional representative. We talked to her about the importance of pre tax savings account plans for people with special needs (they allow parents of kids like Vi to set up savings plans that don't conflict with their abillity to get social security or Medicaid), and I spoke specifically about the need to fund the Kennedy/Brownback bill and what I personally think will come of better prenatal information getting into the hands of women who have a prenatal dx of DS or other birth defects. I also talked about the women I have been able to meet on the web who have had bad experiences with their obs.

We talked about adoption, and our strong local program with a 250 person wait list for kids with DS. We also talked about what the stimulus could do for our organization (the answer was call my office.) Another subject was DS National Institute of Health funding. I brought up the fact that there is a lot of learning that scientists can do not only about people with DS with research $$, but that they can also learn more about how typical folks can avoid certain diseases like solid tumor cancers, that our kids don't tend to get. She said that sort of information was very very helpful to her.

She also announced in our meeting that she is going to join the DS caucus. And she spoke about Cathy McMorris Rodgers, a congresswoman with a child with DS. She said how lovely she is, and what a strong advocate she is within congress for kids with DS. She said that her little boy is SOOOO cute and that she brings him around a lot to the house. She talked about how wonderful it was when she was pregnant, and how they had a shower for her, and what a shock it was to everyone when her little boy had DS.

It gave me a very strong feeling that our children are in the hearts and minds our our congressional representatitves.

Only thing she said that I didn't care for was mentioning "normal" kids at one point. I think I will encourage our Executive Director to send aid some people first language information. All in all, though, it was a great day!