My friend, Bethany, and I are taking over the Changing Lives program for our local Down Syndrome association. Changing Lives is a program that was designed to educate physicians, nurses, genetic counselors and other health care professionals on the clinical and developmental needs of people with Down syndrome. It was also designed to help prepare professionals to deliver diagnoses, and other sensitive information to parents, whether prenatal or postnatal. Bethany and I are both very passionate about the program, and had both signed up to participate in the program under previous coordinators, but nothing ever worked out for either of us. That's not even worth discussing anymore, so we're moving on.
We thought it would be a good idea to have conversation with someone involved in a thriving Changing Lives program. I contacted NDSS as I figured they would know about the most active and successful Changing Lives programs near us. I was surprised when the lady at NDSS told me the Changing Lives program had been discontinued. Hmmmm....... we're a little late then, aren't we?
New and improved were the words she used to describe the program that's taking the place of Changing Lives. Introducing.............the First Call program. Here's some info from the First Call website. Three years ago, the Joseph P. Kennedy Foundation awarded the "First Call" grant to NDSS and NDSC to survey materials from across the nation and offer recommended prenatal and postnatal materials for accurate and up to date information about Down syndrome. Specifically, the national Down syndrome organizations indicated that they were motivated by recent announcements about new prenatal tests for Down syndrome, the recently passed Prenatally and Postnatally Diagnosed Awareness Act, and ACOG recommendations that all women be offered prenatal testing for the condition.
I am excited about one of the new publications, Delivering a Down Syndrome Diagnosis Guide, as this goes along the lines of the old Changing Lives program. Here are the words the website uses to describe it. The Medical Professional Guide describes how to deliver a Down syndrome diagnosis using key references from the Journal of the American Medical Association, American College of Obstetricians and Gynecologists practice bulletins 77 and 88, and recommendations based on research by Dr. Brian Skotko. The professional writing, design, and photography are essential when approaching medical professionals who regularly receive high-quality materials from other organizations and pharmaceutical companies. After consulting with multiple medical professionals to gauge the optimum format, they overwhelming recommended a brochure distilled to one page. Our bi-fold format does just that with a professional elegance that mirrors the companion expectant parent book.
The expectant parent book, Understanding a Down Syndrome diagnosis, is also available through their website. As our local Down Syndrome association has a Parent to Parent program, I guess they will be distributing that publication. We still have a lot to figure out, working together with the Parent to Parent program without stepping on each other's toes.
As I write this, I know that the samples are in the mail, on the way to my house. I can't wait!! I asked my husband earlier today to let me know when he heard the mailman. He kindly reminded me that this is Veterans Day, and we will not be receiving mail today. Oh, well, it will be here soon enough.
I'm wondering if any of my readers are involved in the First Call program or the Changing Lives program. If you are involved in the Changing Lives program, is your organization going to be switching over to the First Call program? Do you have any information that would help us get this program off the ground? If so, please e-mail me at firstname.lastname@example.org.
Please wish us luck and/or say a prayer for us as we work together on this.