My experience with Down Syndrome

It's an interesting way of passage. Your kid's got a congenital defect, congenital disease, chromosomal abnormality, or whatever else, and suddenly you have to become as expert on the subject to keep him thriving through his life. It can be rough, but it is also very rewarding. It makes you see the world in a different light. Just as you became more aware of pregnant people when you were pregnant and more aware of kids in strollers in public places once you started toting yours along, you become more aware of people and kids with disabilities. It's a very eye opening and sobering experience. It certainly does make you want to get out there and do something.

Personally, I've been concentrating on doing Marcus' therapy in the home, since I'm the one who's here during the week. John has been significantly more involved outside of the home on the Down Syndrome front. He's been looking into our Texas state legislation in progress that deals with disabled people. There has been some erroneous information put out in the newsletter of the Down Syndrome Guild of Dallas, and I just felt that I needed to put it out there for people to see. Below you will find John's assessments of what's out there. He's offered them to me as a scientist and a parent of a child with DS. This information is not clouded by emotions or lack of information as it seems to be in the DSG of Dallas newsletter.

Texas State Legislation information, January 2009

from John

Legislation is updated weekly. This shows bills affecting people with developmental disabilities that have been filed in the Texas legislature. The chart shows the bill number, who filed it, where their office is, plus information about the bill including its status. As bills begin moving through committee I'll update that.

Below are some comments on several of the bills that St. Sen Zaffirini filed:

  • SB 30 (Medically needy program): My concern was that there isn’t any funding for it. Their position is that the bill is not a fiscal issue, it is a service that was discontinued in 2003 and its passage is a hinge upon which a number of other services and programs depend upon.
  • SB 35 (Mortality review): To be done by DADS. There is also no funding attached to this bill. Their position is that we’re one of the few states that does not do this and the GAO recently recommended that Texas implement it – which requires a response. DADS requires “legislative guidance” to implement this program. A number of ways to interpret that phrase, one of which is that DADS is resisting and the Legislature needs to force them to do it. Good news: definitely needed. Bad news: DADS will do it with their existing resources, which means that something else possible suffers – though this is probably not something that gets implemented that often.
  • SB 50 (Respite pilot program): Their position is that this is not intended to be a pilot program and that it will become expanded as it moves through the legislative process. As it moves through their intent is to modify the bill to broaden the scope of who it serves.

The state schools file shows a 7-page summary of several reports dealing with the Texas state schools. Reports include both department of justice investigations (2006 and 2008), state auditor's report, and legislative budget board report. The details in these reports are very important.

The school letter is the letter I wrote to the governor, federal/state legislators, and the head of DADS' advisory board. After reading the details I came to a different conclusion than the advocacy groups.