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Nathan is Hebrew and means "gift from God" - we couldn't have been more blessed than to have been chosen as his parents!

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Wednesday, October 29, 2008

Down Syndrome and the US Congress

This is day 29 of the 31 for 21 campaign that I agreed to participate in at the beginning of October, for Down Syndrome Awareness Month. Today's topic is the - Prenatally and Postnatally Diagnosed Conditions Awareness Act - S.1810, Sponsored by United States Senator Ted Kennedy and Senator Sam Brownback.

First, let me give you a little background - most persons who have had to deal with the medical community regarding Ds have commented on how out of touch the doctors are and how out dated information about Ds is.

What the bill basically does (among other provisions) is authorize the dissemination of up-to-date and accurate information "on the range of outcomes for individuals living with the diagnosed condition, including physical, developmental, educational, and psychosocial outcomes" when a women receives a positive prenatal or postnatal diagnosis for Ds of their child.

When this bill passed the Ds advocates stood up and cheered- rightly so. The press releases were flying and victory was being claimed.

As most of you know, I've worked in government my entire career and policy is one of my specialties (and why I love my job). So, I decided to actually read the bill to see just what the language said. As I suspected, there is NO requirement to do anything. Period.

The policy specifically says that the agencies "may authorize and oversee certain activities"...including"`(v) the establishment of awareness and education programs for health care providers who provide, interpret, or inform parents of the results of prenatal tests for Down syndrome or other prenatally or postnatally diagnosed conditions, to patients..."

Don't you just love government? In policy, one word can make all the difference - that word in this bill is "may." The bill doesn't say that the agency "must" or that the agency "is directed to" - it simply says it "may" do what the Congress has legislated.

Does this mean that it won't happen? No. Does this make the bill any less important? Not at all. This measure is a very important step forward for those persons who's lives are touch by Ds and those yet to come.

What it can mean is that those same organizations that worked so hard to see this policy come to fruition may need to take their battle into those agencies "authorized" to carry it out and make sure it gets done.

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