From NACDD's 2014 Annual Conference

1. THE NATIONAL CENTER FOR PRENATAL
AND POSTNATAL DOWN SYNDROME
RESOURCES
AT THE UNIVERSITY OF KENTUCKY’S
HUMAN DEVELOPMENT INSTITUTE
Mitchell Levitz, Mark Leach, M.A., J.D., and
Stephanie Meredith, M.A.

2. THE NATIONAL CENTER
DOWNSYNDROMEDIAGNOSIS.ORG
• University of Kentucky’s Human Development Institute
• Brighter Tomorrows
• Lettercase
• Down Syndrome Pregnancy

3. THE LEVITZ FAMILY DIAGNOSIS STORY:
1971

4. THE WEATHERS FAMILY DIAGNOSIS STORY:
2013
Last summer, Devan Weathers, 32,
was 20 weeks pregnant and
said, “It may not have even been a
two-minute phone call … I hung up
the phone and started crying in the
parking lot at work, all by myself.”
“Nobody offered anything. Nobody
told me about any resources,” said
Weathers, who only received the
services of a genetic counselor
once she was in the delivery room.
“I had to do all of that on
my own.” [Huffington Post]

5. A Growing Concern
• Prenatal testing technology is developing rapidly.
• Women who are pregnant or who plan on becoming pregnant say
they want balanced, up-to-date, and scientifically accurate information
after a diagnosis.
• There is no federal legal requirement or funding for accurate and up-
to-date information.
• Research indicates the majority of patients do not receive accurate
and up-to-date information about Down syndrome.
• This gap is even more profound for Spanish-speaking patients who
have the highest birth rate for infants with Down syndrome but the
lowest life expectancy.

6. SHIFTING A MEDICAL MODEL

7. State Laws
• 2012: Massachusetts
• 2013: Kentucky
• 2014: Delaware, Maryland, Louisiana
• Pending: Pennsylvania, Ohio

8. Kentucky Down Syndrome Information Act

9. Tips for Passing Down Syndrome Information Acts
• Get the law passed, then publicize
• Tailor your message to your audience’s political leanings
• Keep your team informed, so they are ready when you need to
call upon them
• Be prepared and on time for meetings, hearings
• Work with agency contact to implement
• Appreciate that every state can enact this law

10. Tips for Executing Down Syndrome Information Acts
• Massachusetts: Appropriated $100,000, Department of Public
Health sends out books, created web page for reference
• Maryland: Currently creating website and sending out letters to
medical providers from state ACOG/local Down syndrome
organizations; no appropriations
• Kentucky: Created website for reference; no appropriations

11. Professional Policies
• The American College of Medical Genetics and Genomics (ACMG) policy
statement (2013) indicates that patients should be provided accurate, up-to-
date, and balanced information about Down syndrome upon receiving a
diagnosis. The statement specifically includes Lettercase, Brighter
Tomorrows, and the American Academy of Pediatrics “Health-Care
Supervision for Children with Down Syndrome” as recommended patient
resources.
• The NSGC Practice Guidelines for Communicating a Diagnosis of Down
Syndrome (2011) recommends Lettercase, Brighter Tomorrows, and Down
Syndrome Pregnancy.

13. Supporting expectant parents
Dyan, the mother of a 6 month-old
with Down syndrome, “These
materials were a lifeline to me during
my pregnancy ... It was a bright spot
for me in an otherwise dark and
scary time.”

14. THE NATIONAL CENTER FOR PRENATAL
AND POSTNATAL DOWN SYNDROME
RESOURCES
Mitchell Levitz, Mark Leach, M.A., J.D., and
Stephanie Meredith, M.A.
stephanie.meredith@uky.edu
MLeach@stites.com