Hello Everyone. It is 12:17 here and we have just wrapped up a very long and exhausting day. To start things off, we had a 50 minute delay in Tupelo this morning because of the weather. That made us late getting into Memphis so we also missed our connecting flight to DC. Instead, we had to fly into Detroit and from there - into Reagan National Airport in Washington, D.C. We arrived 4 hours later than we had originally expected.

There are more than 300 people representing 84 affiliates here at this conference. It was fun reconnecting with Jawanda Mast, the former E.D. of DSAM. She is actively involved with this conference as she and her family now live in the Kansas City area where Affiliates in Action is based.

So, other than traveling and meeting new friends, I am sure you want to hear what we did on behalf of our children. There was a training meeting this evening that helped prepare us for our visit to Capitol Hill. We will be getting up in 6 hours, walk 5 blocks, get on the Metro subway and travel over to the Hill. At 8:30 we will attend a breakfast reception in honor of the Down Syndrome Congressional Caucus. Our meetings with Senators Cochran and Wicker and US Rep Childers will follow the reception.

In these meetings, we will ask our leaders to do two things:

1. To improve the quality and availability of information about Down syndrome by signing the McMorris Rodgers letter to the House and Senate Labor-HHS-Education Appropriations Subcommittees in support of funding to implement the Kennedy-Brownback Act (Prenatally and Postnatally Diagnosed Conditions Awareness Act). This piece of legislation was approved unanimously in the previous Congress, but did not include funding. Well, as all of you know, without the necessary funding, the bill is only a shell and is useless. They are being asked to commit $5M per year for 5 years.

This Bill seeks to ensure that pregnant women receiving a positive prenatal test result and parents receiving a postnatal diagnosis will receive up-to-date, scientific information about life expectancy, clinical course, intellectual and functional development, and prenatal and postnatal treatment options. It offers referrals to support services such as hotlines, web sites, information clearinghouses, adoption registries, and parent support networks and programs specific to Down syndrome and other prenatally diagnosed conditions. The goal is to create a sensitive and coherent process for delivering information about the diagnosis across the variety of medical professionals and technicians, who often provide conflicting and inaccurate information.

2. To create financial savings accounts for individuals with Down syndrome. To do this, we will ask our leaders to co-sponsor the ABLE Act (Achieving a Better Life Experience Act). This Bill is actually scheduled to come to the floor for discussion and a possible vote while we are on Capitol Hill, so maybe the collective efforts of all the advocates from the AIA Conference will be effective in passing this piece of legislation on Thursday afternoon.

Basically, this Bill will allow our children to hold regular jobs and get paid a normal wage without any fear of losing their benefits through medicaid, etc. To be implemented effectively, this will require Congress to enact separate appropriations of $10M a year for the model demonstration projects for students with intellectual disabilities and $1.5M for the coordinating center.

Those are only the top 2 topics that we have decided to carry to our local lawmakers. Other subjects we discussed in the conference were: 1) Providing students with disabilities with a quality higher education; 2) Develop a National Down Syndrome Patient Registry; and 3) Expand Medicaid Home and Community Based Services.

I look forward to sharing with all of you about all of these subjects more in depth soon after we get back; but for now, I am calling it a night - uh morning - so that I can be effective in my efforts on Capitol Hill.

Side Note: I still have the flu bug, but not nearly as bad as it was. The meds are working.