In a previous post, I posted the comment I submitted that is due on December 26. This post provides a fuller explanation of the proposed regulation and the reasons for my comment. I invite you to submit your own comment on the proposed regulation. Read on to find out why. With the election over, the Department for Health and Human Services (HHS) has issued regulations to fully implement the Patient Protection and Affordable Care Act (PPACA), aka “Obamacare.” The comment period for one of the Continue Reading
December 3, 2012
A Review of Andrew Solomon’s New Book: Far from [what] tree?
Andrew Solomon's new book, "Far From the Tree," has been receiving a lot of coverage lately--and deservedly so. But, his final assessment begs the question: "Far from what tree?" Solomon's title sums up the contents of his weighty tome. Ten of the twelve chapters are devoted to a single condition each, e.g. Chapter 2, Deaf, Ch. 5, Autism, Ch. 11, Transgender. The title comes from Solomon's assessment that children born with differing conditions than their parents are in some fundamental way Continue Reading
November 28, 2012
An Open Letter to NDSS, NDSC, GDSF on Down syndrome prenatal testing resources
Global Down Syndrome Foundation (GDSF) and the National Down Syndrome Congress (NDSC) recently announced the publication of a pamphlet for patients going through prenatal testing for Down syndrome. It sparked discussion through a blog post by Dr. Brian Skotko, which was soon responded to in a joint press release by GDSF, NDSC, and the National Down Syndrome Society (NDSS). This is an open letter from concerned parents, professionals, advocates, and Down syndrome (DS) support group leaders who Continue Reading
November 21, 2012
Giving Thanks: For those who get to know those with Down syndrome
Happy Thanksgiving! For those going through prenatal testing for Down syndrome, let us give thanks for those who make the effort to get to know more about Down syndrome. Continue Reading
November 15, 2012
What materials did your OB give you about Down syndrome?
When the American College of Obstetricians & Gynecologists (ACOG) changed its recommendations about prenatal testing for Down syndrome in 2007, it emphasized that obstetricians should be "well-informed" about Down syndrome and provide the "natural history" of Down syndrome when delivering a diagnosis. What was your experience? Was your OB well-informed and did they provide you accurate information about living a life with Down syndrome? I ask the question because studies have shown many Continue Reading
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