Monday, July 28, 2008

NDSC and Other News

I just returned from the National Down Syndrome Congress Conference in Boston. It was an amazing event where I was totally energized by the advances in health, education, recreation and more for people with Down syndrome.

Beyond this 3 days spent with a couple thousand people with Down syndrome and their families is so much fun. It is funny, after 3 days of this, when I go to the airport (or in this case, stop at reststops on the thruway) I look at all the families I see and I wonder where their child with Down syndrome is… The conference is a “little” out of proportion, and has become my idea of utopia!

One of the best parts of the whole conference this year was the “More Alike Than Different” campaign—for awesome PSAs click here. Inspiring!

In other news:

This was sent out by the Maternal Child Health Bureau in the July 25th issue of their e-publication, MCH Alert: Focus on Infant Mortality.

(This and past issues are available online at and


"Across 37 indicators of performance, the U.S. achieves an overall score of 65 out of a possible 100 when comparing national averages with benchmarks of best performance achieved internationally and within the United States," state the authors of a report published by the Commonwealth Fund. The report examines key indicators of national health system performance and compares national performance for each indicator against benchmark levels achieved by top-performing groups within the United States or other countries.

The 2008 scorecard uses the same framework, methods, and set of performance indicators included in the first scorecard, which was published in 2006. The updated analyses compared baseline and current national averages, as well as the change in the range of performance, in five core dimensions: healthy lives, quality of care, health care access, efficiency of the health system, and equity in the health system. System capacity to innovate and improve was also examined.

For infant mortality, the authors found that

* The rate of infants born in the United States who die before their first birthday improved slightly from 2002 to 2004 (from 7.0 to 6.8 deaths per 1,000 live births), thus returning to earlier levels. Yet, the U.S. average remains well above rates in the states and countries with the lowest rates.

* Rates of infant mortality in the worst-performing states are more than twice those in benchmark states.

* The gap between leading and lagging states grew wider in 2004, as states with the highest rates -- primarily poor and located in the South -- experienced an increase in infant mortality.

* The United States ranked last among eight industrialized countries that report infant mortality using the same methodology, with a national rate more than double that of the leading countries (2.8 to
3.1 deaths per 1,000 live births in Japan, Iceland, and Sweden in 2004).

"Overall, performance has not improved since the first National Scorecard was issued in 2006," state the authors, concluding that "new national policies that take a coherent, whole-system, population view are essential for the nation's future health and economic security."
Commonwealth Fund Commission on a High Performance Health System. Why not the best? Results from the National Scorecard on U.S. Health System Performance, 2008. New York, NY: Commonwealth Fund. Available at

So again I ask you, with all the work the American College of Obstetrics and Gynecology has to do, why are they spending one minute on Down syndrome????? (For more on this topic read here.)

This is not a rhetorical question. What justifies this??


Jennifer P. said...

Those statistics are alarming! I hate when we run up against questions like this---I never know whether asking the government to take more or less of a role would be the answer. Usually if you can find someway to make a profit out of any issue, it will get taken care of. Sad--but true.

I just wanted to thank you so much for the prayer in my behalf. I take such comfort knowing I"m not the only one petitioning God on my behalf.

All the best to you!

rickismom said...

Yes, when did the change of "natural" childbirth and less twilight sleep occur? When enough women in California stopped going to OB, and having babies at home....

Anonymous said...

I think the suggestion, to follow the money is the answer.

Another problem is to think about is that our culture is constantly narrowing it's perception of "normal".
This keeps watering down the perception of value
of life with a disability
and sets the stage for fear.......

Nothing good comes out of fear.
No one listens when there is fear....