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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.

  • Provide a standard case definition for FASD

  • Promote and fund Education, Awareness and Services across community agencies and systems of care for infants to adults

  • Provide funding to State and Tribal Systems for FASD Services throughout the lifespan

  • 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

  • Reach out to Maine lawmakers 

  • State and National Endorsements of the FASD Respect Act

  • 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:

  • to reduce prenatal alcohol exposure

  • improve outcomes in children with a suspected or diagnosed FASD

Since 2021, we have trained:

  • approximately 40 clinics 

  • across 9 states 

  • 4 in Maine

Training:

  • Pediatric started September 2023

  • Prenatal  will start February 2024

Participants will receive:

  •  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)

  •  Access to a diverse, interprofessional team of national experts in the fields of FASDs, addiction, maternal medicine, developmental pediatrics, and more 

  • A health center stipend

  • Learn more here

Video: Maine SAFEST Choice participants share their experience at 34:40

Maine Alcohol Use Facts 

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.

  • Learn scientifically validated strategies to help children living with PAE and/or FASD and their families

  • Gain a thorough understanding of FASD & PAE, including associated stigma, from leading psychologists in the field

  • Practice and support in using actual session materials to become comfortable with the clinical process

  • Access to the online FMF Portal for full intervention materials specially designed for this clinical population

  • Be a PAE and FASD-informed provider

FMF information

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.

Listen to an interview

with other 

FASD Changemakers 

FASD Strong

 People with FASD share their stories

Living with an FASD  CANFASD

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.

 

Eileen Devine LCSW

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:

  • learn more about their child's invisible brain-based disability

  • learn accommodations and intervention that truly support parent/child/family

  • 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

Register here

  • Fetal alcohol spectrum disorders (FASD) represent one of the most common developmental disabilities worldwide.

  • 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.

  • 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:

  • the advantages of identifying FASD in their clients and implementing FASD-informed care principles and skills in their practice. 

  • 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.

  • 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.

  • More information here

September 2023 

FASD Awareness Month 

Celebrating 50 years

of 

Research  Policy  Practice

 1973-2023

  • Go here to learn more about what you can do to get involved in raising awareness and taking action.

  • Go here for American Academy of Pediatrics (AAP) FASD Champions resources for providers, educators, clinicians.

  • Go here to learn more about how Maine providers, clinicians, and educators are working to support those affected by FASD here in Maine.

  • Go here to learn about

     50 years of  FASD research

 

 FAQs

Prenatal Alcohol Exposure

"Pregnant women do not cause FASD. Alcohol causes FASD."​

                        Dr. Ken Jones MD

Why is light drinking a problem?

​​

Why is alcohol such a damaging substance?

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: 

  • the placenta is not a barrier to alcohol

  • recurrent cycle of fetal swallowing and elimination of alcohol 

  • amniotic fluid acts as a reservoir for alcohol

 Do the effects of prenatal   alcohol exposure continue into adulthood?

  • Learn more here  about FASD across the lifespan and how to support the strengths and abilities of those affected.

     (Thank you CANFASD) 

Is alcohol use/prenatal alcohol exposure a concern in Maine?

What can we do to help?

 So much!

Maine providers can participate in the SAFEST Choice Learning Collaborative 

For more information about

FASD Myths and Facts 

 

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:

  • 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.

  • This underscores the significant fact that no known amount of alcohol is safe during pregnancy.

  • Alcohol can directly target several mechanisms at different stages of gestation and enable  teratogenic effects (birth defects)

  • 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:

  • do teachers like the website?

  • is it helpful?

  • is it functional?

Teachers who participate can earn up to $75-100.
You are eligible to participate if…

  • You are an educational professional of grades K-5 in the United States

  • 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:

  • go here to learn more about the study 

  • 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: 

  • problem solving

  • planning

  • shifting tasks

  • verbal and nonverbal fluency

  • impulsivity

  • working memory

These abilities are required for successful functioning in society.

Structured exercise has been shown to:

  • directly cause structural and physiological changes in the brain by increasing blood flow

  • results in upregulation of brain-derived neurotrophic factor (BDNF)

BDNF plays an integral role in:  

  • hippocampal functioning* 

  • neuroplasticity

  • learning

  • memory

  • formation of new neurons and neuroprotection

*The hippocampus is an area of the brain particularly affected by prenatal alcohol exposure.

For FASD (and ASD):

  • Exercise interventions were associated with large improvements in executive function (EF).

  • 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:

  • There is no amount of alcohol during pregnancy that is risk-free.

  • There is no kind of alcohol during pregnancy that is risk-free.

  • There is no time during pregnancy when alcohol consumption is risk-free.

Read complete article here

*Substance use disorder is a treatable chronic disease

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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:

  • executive functioning skills

  • short-term memory

  • the ability to shift attention

  • slower processing speed

Medications for ADHD may worsen symptoms in children with FASD.

AAP Case Study 

11 yo child with parent concerns about attention, hyperactivity, and sleep

For Educators

Deb Evenson

Educational Consultant 

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

FASD Specific Support

to Manage Escalation

Nate Sheets 8:00 Video

8 Things I Wish My School Knew About Me

Eileen Devine LCSW 

Brain First Parenting

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

here

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