fasd maine
FASD Respect Act Press Release
Thank you to
Maine's legislative delegation
for co-sponsoring the
FASD Respect Act!
Senators Angus King and Susan Collins, and Representatives Chellie Pingree and Jared Golden
The FASD Respect Act S.B. 1800 H.R. 3946 is legislation addressing Fetal Alcohol Spectrum Disorder (FASD) on a national level, re-introduced during the 2023-2024 118th Congressional Session.
This bill will continue the work done in the 117th Congress by thousands of advocates and lawmakers to pass meaningful legislation that will positively impact the lives of people diagnosed with FASD or prenatal substance exposure.
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Provide a standard case definition for FASD
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Promote and fund Education, Awareness and Services across community agencies and systems of care for infants to adults
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Provide funding to State and Tribal Systems for FASD Services throughout the lifespan
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Create Centers for Excellence to guide States and other systems of care in expanding diagnostic capacity, public awareness and outreach about FASD, and provide training and technical assistance on prevention, as well as supports and interventions for people diagnosed with FASD
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Reach out to Maine lawmakers
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Thank you to the Maine AAP and NASW Maine Chapter for your endorsement of this legislation!
The SAFEST Choice
Learning Collaborative
ECHO Education 2023-2024
For health centers that serve
prenatal through adolescent patients.
This partnership between Boston Medical Center and Proof Alliance aims:
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to reduce prenatal alcohol exposure
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improve outcomes in children with a suspected or diagnosed FASD
Since 2021, we have trained:
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approximately 40 clinics
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across 9 states
Training:
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Pediatric started September 2023
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Prenatal will start February 2024
Participants will receive:
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Free continuing education credits (physicians, nurses, psychologists, social workers, certified counselors) and MOC Part 2 credits (some of the content can be used to fulfill the new DEA substance use disorder training requirement)
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Access to a diverse, interprofessional team of national experts in the fields of FASDs, addiction, maternal medicine, developmental pediatrics, and more
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A health center stipend
Video: Maine SAFEST Choice participants share their experience at 34:40
Families Moving Forward (FMF)
Specialist Training
The Families Moving Forward (FMF) Program was developed by Dr. Heather Carmicheal Olson in the early 2000s in response to a call from the CDC to develop, test, and implement interventions for children living with PAE/FASD.
FMF training teaches professionals to deliver this scientifically validated intervention program to families.
Organizations can train multiple clinicians and supervisors to become an FASD-informed agency offering the FMF Program.
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Learn scientifically validated strategies to help children living with PAE and/or FASD and their families
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Gain a thorough understanding of FASD & PAE, including associated stigma, from leading psychologists in the field
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Practice and support in using actual session materials to become comfortable with the clinical process
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Access to the online FMF Portal for full intervention materials specially designed for this clinical population
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Be a PAE and FASD-informed provider
Individuals with FASD
Speak Up
“Being informed helps people understand and accept their condition so they can understand and accept themselves,” said Myles Himmelreich, an FASD activist and researcher who also has an FASD...Being able to talk to someone with FASD about these shared experiences can empower people to help and mentor others."
Thriving While Living with FASD
University of Rochester Psychologists make the case for an approach to FASD based on strengths rather than deficits.
with other
FASD Changemakers
People with FASD share their stories
In this two-minute video, Kiera Knowlton, a young woman with Fetal Alcohol Spectrum Disorder (FASD), discusses FASD and some of the ways it can affect individuals who have this disability. Kiera explains why an accurate diagnosis is so important - allowing the individual with FASD to access appropriate support, make the most of their talents and strengths, and build the best life for themselves.
Parent of Child with FAS
Founder of Brain First Parenting
Maine families have found that Eileen's support has given them a safe place to:
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learn more about their child's invisible brain-based disability
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learn accommodations and intervention that truly support parent/child/family
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find other families who understand their day-to-day reality, where they will find hope, support, inspiration and reprieve
A sample of Eileen's blog posts:
"This is the first in a two part series on windows of tolerance. This first post will focus on what it means for your child, who lives with a brain-based difference and challenging behavioral symptoms, to have a narrow window of tolerance. Part 2 will focus on your own window of tolerance, as the parent of a child with intense needs and challenges."
Maine Department of Education
and
Maine Association Of School Psychologists (MASP)
present
Fetal Alcohol Spectrum Disorders with Christie Petrenko PhD
(In-person or virtual option)
October 30, 2023
8:30 AM - 4:00PM ET
Harraseeket Inn Freeport, Maine
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Fetal alcohol spectrum disorders (FASD) represent one of the most common developmental disabilities worldwide.
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FASD are life-long conditions and affect 2-5% of the US population. Rates of FASD are even higher in special populations such as those served within child welfare, mental health, special education, and justice systems.
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Most professionals in these systems are not provided the necessary education and training to effectively serve people with FASD. Without access to knowledgeable providers, people with FASD experience considerable inequity and lower quality of life.
Attendees will learn:
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the advantages of identifying FASD in their clients and implementing FASD-informed care principles and skills in their practice.
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how key skills such as “reframing” and “accommodations” can build on successful strategies they are already using with clients, and effectively tailor them to meet the strengths and needs of people with FASD.
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given the high rates of FASD in special education and mental health settings, this will allow providers to promote healthcare equity and improve quality of life in their clients.
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Go here to learn more about what you can do to get involved in raising awareness and taking action.
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Go here for American Academy of Pediatrics (AAP) FASD Champions resources for providers, educators, clinicians.
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Go here to learn more about how Maine providers, clinicians, and educators are working to support those affected by FASD here in Maine.
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Go here to learn about
50 years of FASD research
FAQs
Prenatal Alcohol Exposure
"Pregnant women do not cause FASD. Alcohol causes FASD."
Why is light drinking a problem?
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Watch this to learn more from experts and individuals with lived experience
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Watch this to learn how alcohol effects each person and pregnancy differently
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Read this to understand how "low to moderate alcohol consumption" can result in FAS/PFAS
Why is alcohol such a damaging substance?
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Alcohol is a teratogen. All teratogens (like thalidomide or rubella) cause birth defects. Alcohol can cause damage to any system of the body. It is particularly destructive to the brain of the fetus, causing damage to the structures, function, neurochemistry, and the brain's ability to grow and repair. Studies show, there is no safe level of prenatal alcohol exposure.
Read this to better understand how one could not have designed a substance with more capacity to cause damage, given the perfect storm of factors:
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the placenta is not a barrier to alcohol
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recurrent cycle of fetal swallowing and elimination of alcohol
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amniotic fluid acts as a reservoir for alcohol
Do the effects of prenatal alcohol exposure continue into adulthood?
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Learn more here about FASD across the lifespan and how to support the strengths and abilities of those affected.
(Thank you CANFASD)
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Watch this interview with a person diagnosed with FASD in mid-life.
Is alcohol use/prenatal alcohol exposure a concern in Maine?
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Maine has one of the highest rates of alcohol use among childbearing aged adults (62%).
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Maine's overall rate of alcohol use among pregnant adults is 10%
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In six of our sixteen counties the rate is 10% and higher
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As high as 16.5% (1/6) in Cumberland County
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Unintended pregnancy rate is 36%
What can we do to help?
So much!
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Read this to learn about stigma
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Go to FASD United to see how our own attitudes and behavior can create barriers for those seeking support in pregnancy
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Many simple effective tools are available to:
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OB/GYN practitioners
Maine providers can participate in the SAFEST Choice Learning Collaborative
For more information about
Review of studies on high resolution imaging on effects of prenatal alcohol exposure
Here are some of the findings:
Based on a pregnancy cohort study from 8 metropolitan areas in the United States, it was found:
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every successive week of alcohol use led to an 8% increase in the risk of spontaneous abortion and did not correlate to the number of drinks consumed per week or to binge drinking.
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This underscores the significant fact that no known amount of alcohol is safe during pregnancy.
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Alcohol can directly target several mechanisms at different stages of gestation and enable teratogenic effects (birth defects)
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Read full article here
Meombe Mbolle A, Thapa S, Bukiya AN, Jiang H. High-resolution imaging in studies of alcohol effect on prenatal development. Adv Drug Alcohol Res. 2023;3:10790
Looking for K-5 Teachers!
New Study Announcement
for School Year 2023-2024
Will you have a student with a fetal alcohol spectrum disorder (FASD) or prenatal alcohol exposure (PAE) this upcoming school year?
We need your help to test out a new website for teachers!
Researchers at the University of Rochester have developed a website for teachers about FASD.
We want to know:
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do teachers like the website?
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is it helpful?
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is it functional?
Teachers who participate can earn up to $75-100.
You are eligible to participate if…
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You are an educational professional of grades K-5 in the United States
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You will have at least one child with FASD or PAE between the ages of 5-12 this upcoming year in your class
If you are interested:
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go here to learn more about the study
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If you have any questions or concerns, please contact:
Carson Kautz-Turnbull at carson_kautz@urmc.rochester.edu
How to Improve
Executive Function (EF)
in Individuals with FASD?
Exercise!
Children with prenatal alcohol exposure (PAE) struggle with EF deficits:
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problem solving
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planning
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shifting tasks
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verbal and nonverbal fluency
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impulsivity
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working memory
These abilities are required for successful functioning in society.
Structured exercise has been shown to:
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directly cause structural and physiological changes in the brain by increasing blood flow
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results in upregulation of brain-derived neurotrophic factor (BDNF)
BDNF plays an integral role in:
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hippocampal functioning*
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neuroplasticity
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learning
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memory
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formation of new neurons and neuroprotection
*The hippocampus is an area of the brain particularly affected by prenatal alcohol exposure.
For FASD (and ASD):
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Exercise interventions were associated with large improvements in executive function (EF).
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Exercise may be a potentially cost-effective and readily implementable intervention to improve executive function in these populations.
Why No Alcohol During Pregnancy is the Safest Choice
Dr. Vincent Smith MD MPH
Division Chief of Newborn Medicine at Boston Medical Center
"Although parents with a substance use disorder* have a higher likelihood of having a child with FASD,
most children with FASDs are born to parents who do not have a substance use disorder."
Prenatal alcohol exposure and potential harm can also occur before a person is aware they are pregnant.
Children with prenatal alcohol exposure come from every social, economic, racial, and ethnic group.
In the United States, nearly 1 in 7 pregnant people report alcohol use in the past 30 days.
The American Academy of Pediatrics (AAP) advises:
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There is no amount of alcohol during pregnancy that is risk-free.
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There is no kind of alcohol during pregnancy that is risk-free.
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There is no time during pregnancy when alcohol consumption is risk-free.
Read complete article here
*Substance use disorder is a treatable chronic disease
75% of children with an FASD have an attention problem and may be diagnosed with ADHD without considering other diagnoses. Attention deficits in children with an FASD without ADHD may derive from deficiencies in:
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executive functioning skills
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short-term memory
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the ability to shift attention
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slower processing speed
Medications for ADHD may worsen symptoms in children with FASD.
11 yo child with parent concerns about attention, hyperactivity, and sleep
For Educators
Brief video on importance of FASD awareness in our school systems. A feasible and inspiring approach.
6 Things Educators and School Staff Should Know About FASD
Nate Sheets 8:00 Video
to Manage Escalation
Nate Sheets 8:00 Video
8 Things I Wish My School Knew About Me
Eileen Devine LCSW
Popova, Svetlana, et al.
Special Education for Children with FASD. Exceptionality.2016 Jul 2;24(3):165–175
Read recently published research and reports on FASD