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 http://www.mchlibrary.info/alert/archives.html and http://www.sidscenter.org/alert/archives.html.)


REPORT PRESENTS CURRENT INFORMATION AND TRENDS ON THE NATION'S HEALTH SYSTEM PERFORMANCE

"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
http://www.commonwealthfund.org/publications/publications_show.htm?doc_id=692682.

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??

Prenatal Diagnosis of Down Syndrome: Blogging Against Disablism

Goldfish is hosting the annual Blogging Against Disableism Day--well, actually it was yesterday, but latecomers can be included--so here you go--stop over there and read up on the issues from all kinds of perspectives!

Sometimes when I give a presentation I use what I call my “bunch of balloons” format. I give the audience several bits of information which, taken singly, seem disconnected, but when held together in a bunch lifts us all to a conclusion.

Permit me to use this format today:

The first group of balloons we will take hold of will be about Down syndrome:

• Down syndrome is a genetic condition caused by an extra copy of chromosome #21 in a person’s cells.
• With advances in surgery for heart and digestive disorders, and the recognition of the role of hypothyroidism in Down syndrome, people are healthier and functioning at a higher level.
• The life expectancy for people with Down syndrome used to be 9 years, it is now 55, with some people living much longer. (PS: I don’t find this as worrisome as some folks do. I think the timing for this advance is perfect. With the aging of the baby-boomers our whole country is about to become EXPERTS at working with an aging population with increasing levels of disability—the work we have done creating accessibility for people who already have disabilities is laying the groundwork for successful aging for our entire population those with Down syndrome included!)
• It used to be believed and taught that people with Down syndrome could not read. Today we know that literacy at some level is an expectation for people with Down syndrome with decoding as a relative strength. It is suggested that many people will be able to read at a 4th grade level and some will read at above an 8th grade level. (Many newspapers are written at a 4th-6th grade level.)
• Today people with Down syndrome are going to school, getting jobs, getting married, buying houses and contributing to their communities in ways never thought possible just 40 years ago.
• Siblings of people with Down syndrome when studied report overall positive experiences.
• Disabilities that exist from birth happen in about 1 of every 33 births and among those Down syndrome is termed a low-incidence disability.

I could go on, but you get the picture: there are many indicators that the health, well-being and quality of life for people with Down syndrome have improved greatly in the last few decades.

Do you have these balloons tied around your wrist?

The next few balloons will be about something called Healthy People 2010.

Healthy People 2010 is a group of health goals agreed upon by the leaders in medicine and in the government. It lists many, many indicators of good health. These indicators guide funding and research, and they are analyzed and measured regularly to assess the country’s progress in health care.

The recent data shows that among many other things the following indicators are not improving or are actually getting worse:
• The number of preterm babies is up.
• The number of low birthweight babies is up.
• The number of C-sections—particularly those termed ‘convenience’ is way up. (Except in an emergency, risks of surgery are considered greater than risks of birth.)
• Infant mortality is improving, but remains higher than many other nations
• Maternal mortality is up.
• The racial and socioeconomic disparity in these figures is appalling.

(The dataset for these can be found here.)

(PS again: Because Down syndrome is a low-incidence disability it does NOT contribute significantly to these numbers.)

Got these balloons tied on?

The indicators on the quality of life for people with Down syndrome are improving immensely and the indicators on maternal and infant health are not.

Now, let’s talk about current events:
• Twice in the past 12 months a respected group of physicians has asserted the position that ALL pregnant women should undergo first trimester testing to rule out Down syndrome. (PS yet again—this of course was very powerful marketing of Down syndrome as terrible—a position obviously not supported by current data.)
• Studies show that physicians disclosure of Down syndrome to pregnant women with a negative bias (and you don’t even need the studies to surmise this: the abortion rate after receiving a prenatal diagnosis of Down syndrome is 85-95% depending on who you read—if the information were unbiased wouldn’t the rate be MUCH closer to 50%??)
• These announcements about prenatal testing for Down syndrome made the evening news. I have not heard any such announcements about initiatives on decreasing the rate of C-sections…or improving maternal and infant health.
• Brian Skotko, MD, MPP, wrote a letter to the editor to the Journal of the American College of Obstetrics and Gynecology giving broader and a more positive perspective on Down syndrome. The journal declined to print it. (Read it here,)

Are you airborne? I am.

Frankly, I think some physicians and organizations have a lot of nerve. With all the real work they have to do in their field, I think taking on Down syndrome is a disgusting misuse of time and talent.

The conclusion that I am lifted to is that Disableism definitely exists and it exists in very influential places. It is unbelievable and it is nasty. And if Disableism is so pervasive in an area where there is as much success as there’s been with Down syndrome, no one is safe.

So, who’s next?