“Prince George’s County Maryland – An Opportunity for FASD Awareness”

Last summer, local attorney Evan Wilson had a “light bulb moment” during Dr. Rich’s presentation in Prince George’s County, MD on June 20 about FASD and the law. Dr. Rich and two of the “BSTS change agents” met with him to discuss his perspectives about the role of the judiciary system in identifying and assisting individuals affected by FASD. As a juvenile delinquency attorney, he represents indigent minors in court who cannot afford to pay a lawyer. As Assistant Public Defender in PG County, he sees his job as educating the court about his client as a whole and not solely focused on a “snapshot” of the person’s life. Like the age old question – “Do we look at the crime or the individual?”, public defender Wilson sees the importance of making the court aware of challenges they face in their lives. “If you look at a person they are more than one event, they have a whole life behind them.” He emphasizes the importance of the right treatment protocol for a successful recovery to prevent recidivism (future delinquent acts).  He believes that further education and awareness in the PG County court system to be able to appropriately intervene in the lives of adolescents and adults affected by FASD.

The Guardian – Stop Treating Mentally Ill Children Like Criminals

The Guardian – Stop treating mentally ill children like criminals

This article highlights unthinkable social injustices and human rights discrimination against children and adolescents at their most vulnerable time – during a psychiatric emergency.  Individuals with ND-PAE are often misdiagnosed with or have co-occurring mental illness as a result of their neurodevelopmental disabilities.   When they do have need of inpatient psychiatric services, most are ill-equipped to treat their complex neurodevelopmental issues.  Because they have a hard time understanding consequences and avoiding peer pressure, they are at high risk of delinquent behavior and may end up in detention centers or jail.  There is need for more comprehensive, specialized programs and services for adolescents with ND-PAE and other neuropsychiatric conditions, not just warehousing them away from society.

Early intervention programs to identify exposed infants and toddlers with ND-PAE, as well as raising awareness about how early in pregnancy these problems happen (therefore primary prevention includes preconception health and family planning for alcohol users). Individuals with ND-PAE are at much higher risk of teen pregnancy, poor parenting skills, and subsequent child welfare issues because of low adaptive functioning skills.  Often, the way they were parented leads to their parenting style being harsh and punitive. Their limited coping skills, poor frustration tolerance, and lack of resourcefulness leaves them at much higher risk of neglect and abuse of their own children.  It is important for them to have access to injectable, implantable, and other long term, effective contraception to improve their life skills and community supports prior to pregnancy.

Putting a child in jail to await a psychiatric evaluation is like putting an elderly person with a broken hip in jail while waiting for a bed at a rehabilitation program. When are we going to start valuing the emotional well being of our most precious resource?  The children are our future and we must protect them at all cost!

More information on ND-PAE and criminal justice issues on our blog

Challenges of individuals with FASD. “Lives and crimes: Kids who suffer foetal alcohol spectrum disorder”

American Bar Association Resolution on FASD: A Call to Action for the Criminal Justice System

Prenatal Alcohol Exposure and it’s consequences…

Raising Awareness About FASD

Dr. Susan D. Rich has given Grand Rounds at the University of Minnesota Department of Psychiatry on November 12, 2014 and at Georgetown University Medical Center on Tuesday, January 6th about the topic of Neurodevelopmental Disorder associated with Prenatal Alcohol Exposure (ND-PAE), the diagnostic term in DSM-5 for Fetal Alcohol Spectrum Disorder.

In an article in Psychiatric News in 2005, Dr. Rich said:  “I was furious when I first heard the term ‘funny-looking kid,’ or FLK, almost 12 years ago. A rural pediatrician was describing how doctors overlook the possibility of fetal alcohol syndrome (FAS), the physical and neuropsychiatric effects of prenatal alcohol exposure. He said, ‘They look at the parents and say – `They’re pretty funny looking, too.. .so, I guess it’s genetic.’ My passion for prevention of alcohol-related birth defects has been fueled by such attitudes.”

Dr. Rich has been speaking widely about her clinical work with patients who have ND-PAE and the clinical link between autism and FASD. In November, she also spoke at the Minnesota Organization on Fetal Alcohol Syndrome’s annual conference: “FASD and Human Rights.”  During October, she chaired an all day Etiology, Diagnosis, Treatment, and Prevention in an Era of DSM-5 at the American Academy of Child and Adolescent Psychiatry annual conference in San Diego, California.

DSM-5 includes the diagnosis of “Neurodevelopmental Disorder Associated with Prenatal Alcohol Exposure” (ND-PAE) under “Specified Other Neurodevelopmental Disorders” (315.8). The Centers for Disease Control and Prevention estimates that as many as 1 in 20 (or 2-5%) of school aged children in middle class communities have some degree of this preventable disorder. Up to 85% of individuals with ND-PAE have a lifetime prevalence of moderate to severe mental illness.

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Alcohol Research Roundtable at the Physicians Committee for Responsible Medicine

Dr. Susan Rich, President and Founder of 7th Generation Foundation, Inc. – BSTS’s parent organization, was one of three guest speakers on friday december 5th at a roundtable discussion at the Physicians Committee for Responsible Medicine (http://www.pcrm.org/about/about/about-pcrm) in Washington, DC. 
To view the roundtable agenda see PCRM Agenda
PCRM is dedicated to “dramatically changing the way doctors treat chronic diseases such as diabetes, heart disease, obesity, and cancer. By putting prevention over pills, doctors are empowering their patients to take control of their own health.”  The nonprofit has recently redirected its efforts toward research funding and policy related to Fetal Alcohol Spectrum Disorders. PCRM has partnered with Dr. Rich to help highlight solutions to prevent the epidemic caused by our social drug of choice: alcohol.
 
More than 40 years of animal and human research since Fetal Alcohol Syndrome was characterized in 1973 by Drs. Ken Jones and David Smith has shown that alcohol is a neurotoxin and teratogen (cause of birth defects).  In 1981, Dr. Kathleen Sulik of the University of North Carolina showed that these problems occur as early as the late 3rd to early 4th week after conception – long before most women know they are pregnant.  It is not enough to focus prevention of FASD/ND-PAE on pregnant women and put a tiny label on alcohol.  Over 50% of U.S. pregnancies are unplanned and few Americans understand that this condition happens as early as the first few weeks.
Each year, the National Institutes on Alcohol Abuse and Alcoholism funds $30 million toward FASD research – $17 million devoted to animal research, rather than evaluating effective ways to prevent and treat FASD/ND-PAE in people.  Montgomery County, MD where NIAAA is located earns $30 million in profit from the sales of alcohol – equivalent to the entire national budget of NIAAA FASD research. Yet not one warning sign is posted by the local liquor control board or anywhere else in Maryland to raise awareness about the dangers of alcohol during pregnancy or prior to pregnancy recognition (41 other states have adopted such point of purchase signage).
Dr. Rich shared her insights and highlighted the Better Safe than Sorry Project at the roundtable to promote more effective FASD/ND-PAE prevention research.

The Story of 10 year old Annie Who Lives with FASD

Recently, states have been restructuring the departments of health and human services to provide more comprehensive, consolidated care in a systematic way rather than through disjointed bureaucracies of the past half century.  Departments of Mental Health, Public Health, Substance Abuse Services, and Developmental Disabilities – all essentially serving the 12% of the population in the socially disenfranchised underclass – are being reorganized to provide a holistic approach to better serve the underserved populations and disadvantaged.

With change comes concern that even the best intentions may lead to more people falling through the cracks. One mother is fighting to raise awareness about the risk that children like her adoptive daughter with FASD will be lost in the remodeling of health and social service agencies.  “Her little world got robbed. She doesn’t experience things like everybody else does.”

http://www.kfdm.com/shared/news/top-stories/stories/kfdm_vid_12607.shtml

Let’s all join our voices together to ensure that this restructuring actually helps to fill the gaps between service agencies by eliminating some of the bureaucracy and make it easier for families to access services.

Save the Date – Open Door Book Reading and Signing in Bethesda, MD

Event Details
Martha Collins and Mary Evelyn Greene
Sun, 23 Nov, 2014 2:00 PM – 4:00 PM 
Martha Collins reads from Day Unto Day. She is joined by Mary Evelyn Greene, author of When Rain Hurts. The reading will be followed by a reception and book signing.

Martha Collins is the author of Day Unto DayWhite Papers,  and Blue Front , a book-length poem based on a lynching her father witnessed when he was five years old. Collins has also published four earlier collections of poems, three books of co-translations from the Vietnamese, and two chapbooks. Both White Papers andBlue Front won Ohioana awards. Blue Front also won an Anisfield-Wolf Book Award, and was chosen as one of “25 Books to Remember from 2006” by the New York Public Library. Collins’ other awards include fellowships from the NEA, the Bunting Institute, the Ingram Merrill Foundation, and the Witter Bynner Foundation, as well as three Pushcart Prizes, the Alice Fay Di Castagnola Award, a Lannan residency grant, and the Laurence Goldstein Poetry Prize.

Mary Evelyn Greene, Senior Managing Attorney with the Environmental Integrity Project, adopted two IMG_3401toddlers from Russia in 2004. Ever since, she has devoted herself to improving her alcohol-exposed son’s conditions, publishing articles in Adoptive Families Magazine and Adoption Today along the way. She is a contributing author to Easy to Love but Hard to Raise (2012), a collection of stories written for and by parents of special needs kids. She currently lives in Silver Spring with her husband and children. When Rain Hurts is her first book.

Location: The Writer’s Center
4508 Walsh Street
Bethesda, MD 20815
Fees: Free admission
Contact: 301-654-8664 or post.master@writer.org
Calendar: Workshop & Event Calendar
Category: Open Door Reading
As part of the BTST Book Club series Dr. Rich and her change agents were very fortunate to be given the opportunity to sit down with Mary Greene and talk with her about her journey of adoption and the struggles and joy she and her husband have experienced since then.
From discussions about her son’s disruptive behavior to learning about and dealing with his FASD-related special needs, she opens up her life in a very honest and touching way.
“When rain hurts” by Mary Greene
Her book has inspired us and will hopefully motivate others to change their lifestyle behaviors before, not just during, pregnancy.

FASD Matters. Impressions from the 2014 MOFAS conference “FASD and Human Rights”

 MOFASSusan
I’m delighted to be a visiting scholar for the University of Minnesota’s Department of Child Psychiatry this week.  I had the opportunity to meet with many people from the Department who are doing amazing work to prevent and treat Fetal Alcohol Spectrum Disorder.  I presented at the MOFAS  “FASD and Human Rights” conference today:  “From Deinstitutionalization to Incarceration –  The Human Rights Tragedy of FASD”. Perhaps more than any other agency in the country, MOFAS has taken the lead to address the leading preventable cause of neurodevelopmental disorders and intellectual disability in the world.  Up to 50% of the 60,000 children adopted from Russia and the former Soviet countries have some degree of this problem and 1 in 20 (5%) of school age American children in middle class families are affected.  These statistics are not surprising given that 50% of pregnancies are unplanned and there are epidemic rates of childbearing age women binge drinking.
 

The efforts of the Minnesota Organization on Fetal Alcohol Syndrome have led to pregnancy test kits being put in some of the bars in this state to help women stop and think about whether they might be pregnant before they buy a drink.  It’s a great idea, and a novel prevention approach.  It will hopefully help non-pregnant alcohol consumers “stop and think” about preventing pregnancy before they drink.  Though it’s only in 4 bars in the state, if this effort prevents only 4 children from having FAS, the state would save $850,000 per child, accounting for years of productive life lost and healthcare/mental health/delinquency costs.  That would be nearly $1.5M the state could put toward educating its future citizens, creating opportunities for resources for families and prevention of this condition.
While pregnancy test kits are at least further upstream than the tiny warning label on alcohol, I’m our Better Safe than Sorry campaign goes to the small tributaries where the salmon are spawning.  By alcohol consumers preventing pregnancy (through contraception) and avoiding alcohol if pregnant or planning a pregnancy, we will be able to stem the tide on this preventable epidemic.  That’s why we say – It’s Better Safe than Sorry – Alcohol and Unprotected Sex Don’t Mix! 
Simply put – If you use alcohol, contracept! 
For more information:
MOM. LOVE. HOPE. JOY. Three inspiring words and emotions most women experience during pregnancy: Check out MOFAS new campaign 049 ZERO ALCOHOL FOR NINE MONTHS  
http://www.mofas.org/drinking-pregnancy/049-2/

MOFAS