October 2018 eNewsletter
Presentation Highlight for
The Family Voice: Parent Panel Brings
Messages of Challenge and Hope to
NC State Collaborative
NCFASD Informed hosted a parent panel in September at the North Carolina Collaborative for Child, Youth and Families.
“It was a powerful presentation. The panelist's testimonies made the family perspective clear and moving," shared Joanne Scatturo, North Carolina Collaborative for Children, Youth and Families Co-Chair.
Three parents from the Triangle FASD Support Group answered questions posed by moderator, Kathy Hotelling, Ph.D., NCFASD Informed Board Chair, and parent of an adult with an FASD. The parents shared their very personal perspectives of raising children with complex needs. Although there were differences in responses, there were striking similarities, including:
What Is an FASD informed Community?
Elizabeth Field, M.S., co-founder of NCFASD Informed and parent of a teen with an FASD, also gave an overview of the characteristics of an FASD informed community, and the barriers to achieving informed communities, from her parent perspective.
Early Diagnosis and Intervention Services
Strong Circle of Support
Barriers to Creating FASD informed Communities in North Carolina
Pervasive lack of knowledge about FASD*
Low diagnostic capacity
Lack of information for families about services available to those with a developmental disability
Lack of evidence-based interventions
Public stigma toward diagnosis
Funding in NC only exists for prevention
*Two Key MYTHS: Most health and mental health professionals are still looking for "the face” and very low cognitive functioning. FACTS: Most people do not have facial features associated with FAS, and IQs range from low to high.
NCFASD Informed, Inc. Is Now a 501(c)(3) Nonprofit
We are excited to announce NCFASD Informed has received 501c3 nonprofit status. Receiving federal tax-exempt status will help us join with other 501c3 nonprofits who are supporting children with I/DD (Intellectual and/or Developmental Disabilities) and their families. Fetal Alcohol Spectrum Disorder (FASD) is a neurodevelopmental disability.
Our new status should help with applying for state and federal grants to expand our reach to all of North Carolina. Please contact us if you identify any grants that may be of interest to us, or organizations with whom we should partner.
Thank you to all who have volunteered their time and talents to help us reach an important next milestone for NCFASD Informed. On to the next!
Resources to Share
Check out Parent Resources on our web site: Go to www.NCFASDinformed.org and click on Resources tab.
NEW! An American Academy of Pediatrics (AAP) report published in the October issue of Pediatrics addresses pediatrician management of FASD.
The AAP FASD Toolkit was developed to “raise awareness, promote surveillance and screening, and ensure that all affected children receive appropriate and timely interventions". Please pass along to healthcare and mental health providers.
Diagnosis in North Carolina
informed is an e-newsletter from NCFASD Informed, Inc. The mission of NCFASD Informed is to create FASD informed communities in North Carolina to empower individuals impacted by prenatal alcohol exposure. The vision is to a world where individuals with FASD can thrive. Founded in January 2018, NCFASD Informed, Inc. is a 501(c)(3) nonprofit organization focused on FASD Education, Diagnosis, Intervention, and Family Support. Its mission does not include Prevention programs.
Send comments and article suggestions to the informed editor, Elizabeth Field, M.S.: Elizabeth.firstname.lastname@example.org
This newsletter is provided to families and professionals as information on Fetal Alcohol Spectrum Disorder (FASD). It is not intended to replace professional medical, psychological, behavioral, legal, nutritional, or educational counsel. Reference to any specific agency does not necessarily constitute or imply its endorsement, recommendation, or favoring by NCFASD Informed.