FASD in the News
How Educators Secretly Remove Students With Disabilities From School
Erica Green NYT
Known as informal removals, the tactics are “off-the-book” suspensions often in violation of federal civil rights protections for those with disabilities. In a report last year, the National Disability Rights Network, a national nonprofit established by Congress more than four decades ago, found informal removals occurring hundreds and perhaps thousands of times per year as “off-the-book suspensions.” The report said the removals also included “transfers to nowhere,” when students are involuntarily sent to programs that do not exist. The removals largely escape scrutiny because schools are not required to report them in the same manner as formal suspensions and expulsions, making them difficult to track and their impact hard to measure. But interviews with families, educators and experts — as well as a New York Times review of school emails, special education records and other documents — suggest that informal removals are pernicious practices that harm some of the nation’s most vulnerable children. Students are left academically stifled and socially marginalized. Their families often end up demoralized and desperate.
“The reality is that there are children in this country who are still considered of insufficient quality to go to school,” said Diane Smith Howard*, a lawyer with the National Disability Rights Network. “This would never be deemed acceptable for students without disabilities.”
*Formerly of Disability Rights Maine
Legislation Introduced in New York to Include FASD as Developmental Disability
The New York State Senate has seen legislation (A.2297/S.1866.) introduced by Senator Samara Brouk of the 55th District and Assembly member Sarah Clark of the 136th District that seeks to amend the Mental Health Hygiene Law, adding FASDs to the definition of “developmental disability”. This change would include fetal alcohol syndrome, partial fetal alcohol syndrome, and alcohol-related neurodevelopmental disorder. 2023 has already seen similar legislation introduced in North Dakota, where the State Senate seeks to include FASDs in the definition of developmental disability as part of a larger FASD related bill.
States that currently include FASD under IDEA category , Other Health Impairment*:
States with pending FASD legislation:
•New York S 1866
•North Dakota SB 2335
States with pending FASD legislation that would increase comprehensive services for all children, youth, adults with FASD:
* "Other Health Impairment" is one of the 14 categories of disability listed in our nation’s special education law, the Individuals with Disabilities Education Act (IDEA). Under IDEA, a child who has an “other health impairment” is very likely to be eligible for special services to help the child address his or her educational, developmental, and functional needs resulting from the disability. Currently, most states do not include FASD as a named condition under the OHI category. In these states, a student with FASD could be eligible for services; it requires more effort and the student may not ultimately qualify for services, or the student may not receive FASD specific support.
For more general information and to see how other states obtain support for students with FASD go here or here.
Landmark FASD Legislation Introduced in North Dakota
The Legislative Assembly of North Dakota has introduced a bill that could have a direct positive impact on individuals with FASDs and their caregivers, as well as the systems of care they rely on. Senate bill 2335, seeks to:
amend multiple definitions related to FASD and education
include FASDs as a “developmental disability”
ensure that the juvenile court system assesses children for FASD in order to better address their needs
create an FASD council
mandate FASD training for foster parents. Read more here
CDC Alcohol Use, Screening, and Brief Intervention Among Pregnant Persons — 24 U.S. Jurisdictions, 2017 and 2019 Weekly / January 20, 2023 / 72(3);55–62 Jackie Luong, et al.
80% of pregnant persons reported being asked about their alcohol use
Only 16% of those with past 30-day alcohol consumption were advised by a health care provider to quit or reduce their alcohol use.
Disparities in alcohol screening were observed among pregnant persons with lower educational attainment.
Alcohol screening and brief intervention (ASBI) is an evidence-based tool to reduce alcohol consumption in adults, including pregnant persons. Implementation of recommended Alcohol Screening and Brief Intervention (ASBI) among pregnant persons can help prevent alcohol use or reduce current drinking. Strategies to enhance ASBI include integrating screenings into electronic health records, increasing reimbursement for ASBI services, and development of additional tools including electronic ASBI.
There is no known safe amount of alcohol, type of alcohol, or timing of alcohol use during pregnancy or while trying to become pregnant. Alcohol in the mother’s blood passes to the baby through the umbilical cord. Alcohol use during pregnancy can cause miscarriage, stillbirth, and a range of lifelong physical, behavioral, and intellectual disabilities. These disabilities are known as Fetal Alcohol Spectrum Disorders (FASDs).
AAP Screening for Prenatal Alcohol Exposure
Science Daily November 18, 2022
Brain organoids reveal in detail the harms of prenatal alcohol exposure.
Although the clinical effects of fetal alcohol spectrum disorders are well documented, the precise molecular effects on the human fetal cerebral cortex are not fully understood. In a new study, published November 16, 2022 in Molecular Psychiatry, researchers at University of California San Diego School of Medicine used human brain organoids to more specifically document how alcohol exposure impairs the development and functioning of new brain cells.
"The findings underscore the broad threat of alcohol exposure to the fetal brain. The harm inflicted is profound and extensive," said Alysson R. Muotri, PhD, professor in the Departments of Pediatrics and Cellular and Molecular Medicine at UC San Diego School of Medicine.
Passage of landmark law in California, SB 1016, for the first time specifies Fetal Alcohol Spectrum Disorders (FASD) as a named condition that qualifies a person to receive special education services under the category “Other Health Impairment.” This will improve the lives of thousands of people living with FASD, a disability that affects up to 1 in 20 school children, making it the most prevalent, yet mostly unrecognized, developmental disability in the US.
We can do this in Maine!
Change the law in Maine so that Fetal Alcohol Spectrum Disorders is a "named condition" that qualifies a student to receive special services under the Individuals with Disabilities Education Act (IDEA) category of "Other Health Impairment."
Fetal Alcohol Spectrum Disorder (FASD) is currently not a recognized category for special education under IDEA. It is also not named as a disorder under the Other Health Impaired category (Scroll to #2, J), by the Maine Department of Education. Hence, students with the most prevalent developmental disability in the US are being underserved in school districts across the state, unable to make the most of their neurodiversity and many skills and talents; due to lack of services and support in childhood, these students and their families often suffer lifelong consequences.
There is precedent for this kind of legislation. Other states including Alaska, Minnesota, and Colorado, and now California consider FASD as a qualifying condition for special education. Advocates strongly believe that by recognizing and appropriately addressing FASD in education the trend towards secondary disabilities can be disrupted and the school-to-prison pipeline for students on the FASD spectrum can be broken. FASD needs to be addressed in education. It is a matter of equity and justice. A bill like California's SB1016 would expand eligibility for Maine students to receive special education and related services.
For more information about IDEA and "other health impairment" re:FASD.
Choline Supplementation as a Neurodevelopmental Intervention in Fetal Alcohol Spectrum Disorders Study (CHOLINE4) Clinical Trial
Dr. Jeff Wozniak PhD University of Minnesota and NIAAA
Open Recruitment Children Ages 30-72 months Eligibility details here
This is a randomized, double-blind controlled trial of choline supplementation in children with Fetal Alcohol Spectrum Disorders (FASD). The study is comparing two administration durations (3 months vs. 6 months) of choline. The primary outcome measures are cognitive measures.
This project is the fourth in a series of randomized, double-blind controlled trials of choline bitartrate in children ages 2.5 - 5 (under 6) years with prenatal alcohol exposure. Pre-clinical data suggests that choline may attenuate the cognitive deficits caused by prenatal alcohol exposure (especially memory deficits). This study will evaluate the effects of daily choline supplementation in two dosing regimens (3 months choline vs. 6 months choline). Outcome measures include an elicited imitation memory paradigm, IQ measures, and measures of memory and executive functioning, and behavior.
Previous study on FASD and choline supplementation
Dr. Wozniak PhD Video (2015) Choline supplementation and PAE
Prenatal and Postnatal Choline Supplementation Ernst, Abigail, et al. Nutrients. 2022 Feb; 14(3): 688
Rise in Deaths Spurs Effort to Raise Alcohol Taxes NYT September 11, 2022
Alcohol taxes have been stagnant for years... But after the pandemic sent alcohol-related deaths soaring, activists in Oregon said higher taxes could save lives...Dr. Tim Naimi, director of the Canadian Institute for Substance Use Research at the University of Victoria, labeled educational campaigns a “fig leaf” and said that treatment, while helpful, was akin to parking an ambulance beneath a cliff rather than fencing the precipice to prevent people from falling. Measures to prevent excessive drinking are less costly and more effective, he said. “If you want to talk prevention, you’ve got to talk policies.”
One way that governments can influence the price of alcohol is by taxing its producers or sellers, who pass the cost on to consumers. This is comparable to taxes on tobacco, which scores of studies show to be a powerful tool for reducing smoking. A large body of evidence shows that higher alcohol taxes are associated with less excessive drinking and lower rates of disease and injury deaths. After Illinois and Maryland raised alcohol taxes, the states reported reductions in binge drinking and car crashes involving intoxication.
Alcohol Consumption is Increasing During Pregnancy: Why Experts Are Alarmed
A new report in JAMA Network states that heavy alcohol consumption increased among pregnant women between 2011 and 2020.
Experts say this is a worrisome trend because any amount of alcohol during pregnancy poses risks for an unborn child.
They say stress, anxiety, and depression can lead to alcohol use during pregnancy, but they add that there also appears to be a general relaxation about drinking while pregnant.
"It was disheartening to see that both binge drinking and heavy alcohol consumption did increase in pregnant women in the last decade. I’m not particularly surprised by it, unfortunately,” said Dr. Vanessa Parisi, OB-GYN, the president of the New Jersey OBGYN Society and a team member of the American College of Obstetricians and Gynecologists (ACOG) Fetal Alcohol Spectrum Disorder (FASD) Prevention Program.
The work has to start with the education of the medical provider. How to ask open-ended questions without stigma. To tell our patients there is no safe amount, type, or timing of alcohol in pregnancy.
We should all be using a validated screening tool like AUDIT-US…Properly tackling this at preconception and annual visits can address the issue and drastically decrease the incidence of FASDs.” Dr. Vanessa Parisi MD ACOG
Response to JAMA article on increase in alcohol use among pregnant women 2011-2020
The Overlooked Toll of Drinking While Pregnant Emma Yasinski
National Geographic July 2022
Studies have estimated that fetal alcohol spectrum disorders, or FASD, affect between
1 and 5 percent of the population, though experts suspect the prevalence is even higher.
“It wasn't until 14 years into our son’s life that we really started to connect the dots,” that the prenatal exposure to alcohol affected his development and behavior, says Sheagren, a filmmaker in Minnesota. He was surprised. “This is such a prevalent issue,” he says. “How come I didn’t know?”
Alcohol study funded by Bill & Melinda Gates Foundation finds only risks, zero benefits for young adults
The analysis—part of the wider Global Burden of Disease study—was funded by the Bill & Melinda Gates Foundation and published in The Lancet medical journal July 14, 2022.
It found that for young adults between the ages of 15 and 39, there were zero health benefits—only risks—associated with drinking alcohol. Globally, almost 60% of people who consumed unsafe amounts of alcohol in 2020 fell into this age bracket, according to the findings.
Our message is simple: Young people should not drink, but older people - people over the age of 40 with no underlying health problems - consuming a small amount of alcohol each day could provide some health benefits may benefit from drinking small amounts,” Dr. Emmanuela Gakidou, a professor at the University of Washington School of Medicine’s Institute for Health Metrics and Evaluation. An example of “a small amount” of alcohol was between one and two 3.4-ounce glasses of red wine, the study’s authors said.
The Global Burden of Disease study is massive in scope. It has been ongoing since 1990 and uses data from 204 countries and territories, and is described in the Lancet as "the most comprehensive effort to date to understand the changing health challenges around the world."
Lancet| VOLUME 400, ISSUE 10347, P185-235, JULY 16, 2022
Population-level risks of alcohol consumption by amount, geography, age, sex, and year: a systematic analysis for the Global Burden of Disease Study 2020
Published:July 16, 2022DOI:https://doi.org/10.1016/S0140-6736(22)00847-9
Preliminary Findings From Drug-Related Emergency Department Visits, 2021
Drug Abuse Warning Network (DAWN) SAHMSA
The top five drugs involved in drug-related ED visits in 2021 were alcohol (39.33%), opioids (14.07%), methamphetamine (11.02%), marijuana (10.78%), and cocaine (4.71%).
Of the 2,942,609 alcohol related ED visits, male patients accounted for 71.01 percent of alcohol-related ED visits, while female patients accounted for 851,591 (28.94 percent) of these visits.
The percentage of alcohol-related ED visits was highest among patients ages 26 to 44 (40.63%) followed closely by patients ages 45 to 64 (38.92%).
The top six drugs involved in polysubstance ED visits (i.e., visits related to more than one drug) in sentinel hospitals were alcohol, methamphetamine, marijuana, cocaine, heroin, and fentanyl. While the majority of alcohol-related ED visits were due to alcohol alone, a significant percentage of methamphetamine, marijuana, cocaine, heroin, and fentanyl-related ED visits involved at least one other drug.
Latest statistics from the CDC/DHHS on Alcohol Use in Pregnancy
According to the DHHS CDC January 2022 Morbidity and Mortality Weekly Report (MMWR) the rate of current alcohol use among pregnant adults during 2018–2020 rose to 13.5%, and 5.2% reported binge drinking: both measures were 2 percentage points higher than during 2015–2017. The rate of current alcohol use for pregnant adults in New England (Region 1) was higher than the national rate, at 16.4%, 1 in 6.
Another source of data on self-reported alcohol use during pregnancy - PRAMS (Pregnancy Risk Assessment Monitoring System).
PRAMS Maine reported the rate of alcohol use by pregnant adults in the last three months of pregnancy was 10% or greater in seven of Maine's sixteen counties. The rate jumped to 1 in 8 in Sagadahoc County, 1 in 7 in Lincoln County, and 1 in 6 in Cumberland County.
Alcohol Policy and Covid-19 David Jernigan PhD Webinar
"Who Is Minding the Stores?"
David Jernigan PhD is a professor in the Department of Health Law, Policy and Management at BUSPH; senior policy advisor to CityHealth, an initiative of the de Beaumont Foundation and Kaiser Permanente; and former director of the Center on Alcohol Marketing and Youth (CAMY). He is a member of the Cannabis Advertising and Social Media (CASM) research group, and senior advisor to the Maryland Collaborative to Reduce College Drinking and Related Problems, a statewide effort of 18 institutions of higher education committed to reducing alcohol-related problems on campus and in the surrounding communities. Dr. Jernigan is also the scientific chair and serves on the board of the Global Alcohol Policy Alliance.
This webinar reviews what we know about changes in alcohol consumption since the beginning of the pandemic, as well as the changes in policies governing alcohol availability. It then reviews the policy issues associated with two sets of “stores”:
First, alcohol marketing itself has transformed in the digital marketing age. While industry voluntary codes set limits on youth exposure to alcohol marketing, in the digital era, exposure to marketing is less important than engagement, and both are increasingly difficult to monitor or measure. This brings in the first set of “stores” – the stores of data that alcohol marketers and social media platforms have collected, how they use these to target audiences, and the policy vacuum that surrounds this.
Second, the more obvious “stores” are the physical places to get alcohol. There have been many changes in the physical availability of alcohol in the wake of the pandemic, and alcohol marketers are likely to make these – such as home delivery and carryout cocktails – permanent. The presentation explores the public health and safety implications of these changes in availability, and the policy tools that may be needed to address them.
Alcohol-Related Deaths Spiked During the Pandemic, a Study Shows
March 22, 2022 New York Times Roni Caryn Rabin
The deaths were up 25 percent in 2020 compared with 2019 as stressors accumulated and treatment was delayed, according to a new report...Drinking has been going up for 10 or 15 years among adults, and the trend accelerated in 2020, as some of the motivations to drink changed: Stress-related drinking increased, and drinking due to boredom increased...Among adults younger than 65, alcohol-related deaths actually outnumbered deaths from Covid-19 in 2020; some 74,408 Americans ages 16 to 64 died of alcohol-related causes, while 74,075 individuals under 65 died of Covid.
New Tools May Help Diagnose Fetal Alcohol Spectrum Disorders
Emma Yasinski The Smithsonian
Fetal alcohol spectrum disorders may look like other conditions. Biomarkers could provide a more accurate diagnosis. If conditions stemming from exposure to alcohol in-utero can be better identified, then scientists can more effectively research treatments.
Dr. Christie Petrenko PhD
FASD Hope Podcast Interview
Dr. Christie Petrenko PhD discusses the final stage of the resourceful, innovative and accessible "Families Moving Forward Connect App". Dr. Petrenko is a clinical psychologist and researcher who has been conducting research with individuals with FASD since 2003. She completed her graduate training with Edward Riley and Sarah Mattson in San Diego, CA in 2009 and she is currently a faculty member at Mt. Hope Family Center at the University of Rochester. Her research focuses on developing and evaluating interventions for people with FASD, including the use of mobile health technology to increase access to care. She has experience in training teams of providers, both regionally and internationally, in FASD Diagnoses. Dr. Petrenko also runs a multidisciplinary FASD clinic - providing diagnostic, intervention and family support services in Rochester, NY.
Dr. Douglas Waite MD, AAP FASD Champion
FASD Hope Podcast Interview "Critical Information on FASD"
Dr. Waite is Assistant Clinical Professor of Pediatrics at the Icahn School of Medicine Mount Sinai Hospital, was elected one of ten national FASD Champions by the American Academy of Pediatrics in 2016, sits on the National Mental Health Advisory Board of the Child Welfare League of America, and is a member of the Society of Developmental-Behavioral Pediatrics. Dr. Waite has special interests in fetal alcohol spectrum disorders, post-traumatic stress disorder and the effects of child abuse and neglect upon child development.
The CDC published its latest MMWR (1/7 pregnancies alcohol exposed)
Alcohol Consumption and Binge Drinking During Pregnancy Among Adults Aged 18–49 Years — United States, 2018–2020
In the U.S. 13.5% of pregnant adults reported drinking at least one alcoholic drink in the last 30 days, 5.2% reported binge drinking - four or more drinks on at least one occasion in the last 30days. This is an increase of 2 percentage points from 2019 data, in which 11.5% of pregnancies were alcohol exposed. In New England (Region 1) the rate of reported alcohol use among pregnant adults was 1 in 6, 16.4%. This was the second highest rate in the country - Region 9 was 16.6%
November 12, 2021 "FASD in Maine" Vivien Leigh WCSH 6
Kids exposed to prenatal alcohol not being identified early enough, experts say.
"Experts say Fetal Alcohol Spectrum Disorders, or FASD, affect five percent of all kids.
The U.S. Centers for Disease Control and Prevention say there is no safe amount of alcohol that can be consumed during pregnancy. Exposure can put an unborn child at risk for Fetal Alcohol Spectrum Disorders, or FASD. Thousands of cases in Maine with FASD are not being identified early enough because of stigma and lack of awareness, experts say..."
'It's really an invisible disability. It's an epidemic that is hiding in plain sight, and people are suffering,' Connie Mazelsky, cofounder of FASD Maine, said.
The nonprofit works to increase awareness and prevention of FASD through the education of families, providers, educators, and community stakeholders. It also provides resources to make services and support accessible to those individuals and families affected by FASD."
October 8, 2021 Senator Angus King Press Release
King Cosponsors Bipartisan Bill to Address Pressing Infant Health Issue
FASD Maine welcomes his support of FASD Respect Act seeks to reduce Fetal Alcohol Spectrum Disorders S.2238. H.R. 4151
The complete press release can be found here.
The full text of the bill can be found here.
October 4, 2021
Boston 25 News
Pandemic-induced drinking raises concerns over harm to unborn children
Dr. Julianne Lauring, a maternal-fetal medicine specialist at UMass Memorial Medical Center in Worcester said, “There are reports of women drinking very small amounts and having a baby with fetal alcohol disorders...For a long time, obstetricians have been kind of lenient, saying it’s OK to drink during pregnancy. It’s not true..."
A study by the Rand Corporation found drinking levels among women soared 41%(during the pandemic). Lauring said it’s too early to know the true impact of this trend. "These
children are just being born now, so it may be the next few years as they start to get into school.”
September 20, 2021
Fetal Alcohol Spectrum Disorders: How FASDs Occur, Why They Go Undiagnosed, What Can Be Done to Help Children With These Conditions
Jennifer Rooks of Maine Public, "Maine Calling", interviews two of FASD Maine's co-founders Constance Mazelsky and Madonna Mooney, Dr. Douglas Waite AAP FASD Educator and Division Chief of Developmental and Behavioral Pediatrics at Bronxcare Health System, and Susan Shepherd Carlson, retired juvenile court judge and former First Lady of Minnesota; board member, National Organization on Fetal Alcohol Syndrome; she helped draft the 2021 FASD Respect Act, S.2238. H.R. 4151
September 20, 2021
Senator Susan Collins Press Release
Senator Collins Announces her co-sponsorship of the FASD Respect Act, S.2238.
“Fetal Alcohol Spectrum Disorders can cause tremendous harm to a child’s physical, mental, behavioral, and cognitive development,” said Senator Collins. “Amid FASD Awareness Month, this important bill would strengthen federal, state, and local programs and funding to support individuals and families affected by these heartbreaking conditions. This legislation is critical to protecting the health of mothers and their babies.”
April 19, 2021
New York Times The Upshot
"What’s Behind the Growth in Alcohol Consumption?"
A comparison across demographic groups over two decades offers some clues, and there has been a particular rise in misuse among women during the pandemic... In the past two decades, women died of alcoholic liver disease on average two to three years earlier than men, even though they generally had longer life expectancies. During the pandemic, they have experienced a 41 percent increase in heavy drinking episodes, a survey study showed. (The C.D.C. definition of binge drinking for women is four or more drinks over two hours.)
"Fetal Alcohol Disorders Are More Common Than You Think"
"This Chicago doctor stumbled on a hidden epidemic of fetal brain damage"