FASD Awareness Day

Today is International FASD Awareness Day! We celebrate this awareness day every September 9 (the ninth day of the ninth month), symbolizing the nine months of pregnancy, during which a woman can prevent FASDs by not drinking alcohol. FASD (Fetal Alcohol Spectrum Disorders) is an umbrella term describing the range of effects that can affect a person whose mother drank alcohol while pregnant. FASDs are the most common condition associated with intellectual and developmental disabilities (I/DD) that are 100% preventable.

The Arc is very active in both preventing FASDs from occurring, and in serving people who have FASDs.

The Arc’s FASDs Prevention Project

The project, funded by a cooperative grant from the Health Resources and Services Administration, informs and educates health care professionals/providers about the risks alcohol can pose to an unborn child. Up to 25% of woman continue to drink during pregnancy. Research with health care professionals and women of child-bearing age indicates that many professionals/providers still advise women that light to moderate consumption of alcohol, especially later in pregnancy, is safe. The prevalence of FASD supports the need for more education, alcohol screening, and intervention with women at risk of alcohol-exposed pregnancy. To that end, The Arc has created an FASD prevention toolkit for health care professionals to reinforce the message that no amount of alcohol is safe during pregnancy.

In addition to FASD prevention efforts, The Arc partnered with various organizations, including the Center for Disease Control (CDC), to create and promote an informational toolkit to help spread FASD awareness to all women of child-bearing age. With nearly half of all US pregnancies being unplanned, the awareness of the effects of alcohol on the developing fetus is an imperative message to provide to women.

The Arc’s National Center for Criminal Justice & Disability (NCCJD)

NCCJD is a training and technical assistance center funded by the Bureau of Justice Assistance whose mission is to pursue and promote safety, fairness and justice for all people with intellectual and developmental disabilities as suspects, offenders, victims or witnesses. People with I/DD are disproportionately represented in the criminal justice system. People with FASDs are more likely to be arrested and imprisoned, and are often repeat offenders—it is difficult for a person with an FASD to fully comprehend the rules and regulations of the court and probations systems, and they are often not adequately supported in navigating the criminal justice system. 50% of people with FASDs have a history of confinement in jail, prison, a residential drug facility or psychiatric hospital and the average age that children with FASDs begin to have trouble with the law is 12.8. These are statistics that NCCJD is working to change.

Self-Advocates with FASD in Action (SAFA)

SAFA is the nation’s first self-advocacy group created by and for people with FASDs in March 2011. Despite doubling in members, the group held their last face-to-face meeting in May 2012. SAFA is currently seeking support to continue their in-person meeting, and grow the network to include more local groups nationwide. With proper funding, they also hope to create a certificate program for members to take that will enable them to create presentations on FASDs to present to the community.

AnnaAnna is a founding member who is currently working in her home state of Alaska to help others with FASDs advocate and speak up for themselves. She worked at the Center for Human Development (the University Center for Excellence in Developmental Disabilities) and has been a member of the Governor’s Council on Disabilities and Special Education (The Council on Developmental Disabilities) for 10 years. Anna uses her voice and personal experience to help educate Alaska native people, women, and people who live in rural places about the effects of FASDs. Interested in learning more, or contributing to SAFA?

The Arc and the CDC, along with partners such as NOFAS, Better Endings New Beginnings, and SAMSHA FASD Center for Excellence, are dedicated to providing accurate information to the public, in order to help raise awareness to the 100% preventability of FASDs.

The Arc Taking Lead on Educating Medical Professionals on Fetal Alcohol Spectrum Disorders with New Federal Grant Award

Washington, DC – Building on The Arc’s long history working on Fetal Alcohol Spectrum Disorder (FASD) prevention and providing services to people with FASD, The Arc is pleased to announce it has been awarded a more than $1.3 million cooperative agreement over three years from the federal Health Resources and Services Administration’s (HRSA) Maternal and Child Health Bureau to increase the education of medical professionals regarding alcohol-exposed pregnancy and change clinical practice to better prevent FASD.

Drinking while pregnant can cause FASD, a preventable form of intellectual and developmental disability (I/DD).  Yet according to HRSA, 22.5% of pregnant women drink alcohol and many health care providers advise women that light drinking is safe.  Providers need education on drinking during pregnancy, screening tools and interventions that can prevent FASD.  The Arc, with the support of its national partners, will develop trainings including webinars, peer learning communities, and continuing medical education (CME) courses for allied health professionals, and create and disseminate culturally appropriate materials.

“This grant is a tremendous opportunity for The Arc to make a real difference in how the medical community views the risk of drinking while pregnant.  Working with key players in the medical sector, we expect to dramatically change the conversations happening in doctors’ offices,” said Peter Berns, CEO of The Arc.

The Arc will work with The Association of Reproductive Health Professionals, The National Hispanic Medical Association, The Association on American Indian Affairs, and the National Association of City and County Health Officials to carry out this grant.  The goal of this project is to increase provider knowledge of the risks alcohol poses during pregnancy and encourage prevention by:

  • Conducting a comprehensive needs assessment on the educational needs of providers;
  • Developing an educational plan for increasing provider knowledge of FASD prevention;
  • Working with national professional associations to create culturally and linguistically appropriate educational materials for a range of health care providers;
  • Disseminating materials to providers via national organizations’ networks and other channels; and
  • Assessing the impact of educational efforts on provider knowledge, practice, and prevention.

This award to The Arc comes at a particularly opportune time to capitalize on important changes in our health care system.  Thanks to the Affordable Care Act, starting in 2014, all health insurance marketplace plans and many other plans must cover select preventive services, including alcohol misuse screening and counseling, without charging a copayment or coinsurance when these services are delivered by a network provider.   According to guidance from the Department of Health and Human Services, alcohol misuse includes any alcohol consumption by women who are pregnant or trying to get pregnant.

And starting in October of 2014, the new edition of the International Classification of Diseases (ICD), the standard diagnostic tool for epidemiology, health management, and clinical purposes, will go into effect.  For the first time, there will be specific codes for FASD prevention and intervention.  These welcome and long sought additions to the ICD are expected to yield greater interest in prenatal alcohol exposure by medical professionals and encourage clinical interventions by creating billing codes for such services.

The project will be 100% funded by this cooperative agreement, funded by HRSA, grant # U1HMC26371.

The Arc Reacts to New Book on Pregnancy Risks, Including Drinking Alcohol: “Why Risk It?”

The news media is paying attention to a soon-to-be released book, “Expecting Better: Why the Conventional Pregnancy Wisdom is Wrong—and What You Really Need to Know,” by Emily Oster, an associate professor of economics at the Booth School of Business at the University of Chicago.  As the leading organization supporting people with Fetal Alcohol Spectrum Disorder (FASD), The Arc is pushing back on the claims put forward in this book that could lead women to believe that light drinking during pregnancy is statistically safe.  Oster is not a medical professional, and the medical community has a clear position on this issue – there is no safe amount of alcohol that can be consumed while pregnant.

“Why risk it? That’s the question we should be encouraging women to ask themselves when they consider drinking alcohol while pregnant.  According to the U.S. Surgeon General, the nation’s top doctor, there is no absolute safe amount of alcohol that a woman can drink during pregnancy without risk of harming her unborn baby.  FASD is 100% preventable, yet books like this one give the irresponsible impression that the odds of a drink here or there affecting your child aren’t high enough for women to choose to abstain from drinking alcohol while pregnant,” said Peter Berns, CEO of The Arc.

What is FASD?

FASD is an umbrella term describing the range of effects that can occur in an individual whose mother drank alcohol during pregnancy. These effects can include physical, behavioral, mental and/or learning disabilities with possible lifelong implications.  It is identified by abnormal facial features, central nervous system problems and slowness of growth, and occurs when pregnant women drink alcohol and pass the alcohol along to their unborn babies through the blood stream.  FASD can cause physical and mental disabilities of varying levels of severity, including intellectual disability.  It is often a “hidden disability” that is not easily recognizable, making it difficult to provide affected individuals and their families the supports they desperately need.

What are other disorders linked to drinking while pregnant?

FASD covers other terms such as: FAS (Fetal Alcohol Syndrome), ARND (Alcohol-Related Neurodevelopmental Disorder), ARBD (Alcohol-Related Birth Defects) and FAE (Fetal Alcohol Effects). FAS is the most identifiable and serious disability under the FASD umbrella, although it only accounts for approximately 25% of all alcohol-related effects. FAE is a term often used to describe someone whose condition does not meet the full criteria for an FAS diagnosis.

The data affirms the national recommendation to not drink while pregnant

The CDC doesn’t know exactly how many people are affected, however their studies have shown that between 0.2 to 2.0 cases of FAS occur for every 1,000 live births in the U.S. (this statistic focuses on FAS only, not FASD).

When the number of people with FASD are included in that data, the National Organization on Fetal Alcohol Syndrome states that approximately one in 100 children are affected by FAS or FASD.  This is based on a study from the University of Washington that refer to this as a conservative rate, affirming the belief of many health professionals that fetal alcohol exposure is a serious problem in the United States.

According to the federal Substance Abuse and Mental Health Administration, for one individual with FAS, the most severe form of FASD, the lifetime cost of care is estimated at $2 million.  For our nation as a whole, the cost may be as high as $6 billion each year.

While there is no safe time period in a pregnancy to drink, recent research shows that between weeks six and twelve of a pregnancy, a baby is particularly susceptible to harm from drinking alcohol, showing an increase in certain facial features of FAS, in addition to lower birth weight and length.

“What you don’t know can, in fact, hurt you and your baby – for a lifetime.  There is no safe amount you can drink and still protect your child’s health, and dissecting data to prove otherwise will only increase the number of kids affected.  This is a societal problem that is within our power to tackle, as long as we carefully listen to all the facts,” said Berns.

The Arc Responds to New Report on Alcohol Intake During Pregnancy

Washington, DC – The Arc is concerned about new research released earlier this week from Denmark stating that drinking low to moderate levels of alcohol during early pregnancy will cause no ill effects to children. The Arc’s over 700 chapters have a long history of raising awareness, educating and providing training to their communities about the dangers of drinking while pregnant. Unfortunately, studies like this serve to minimize alcohol’s severe effects on an unborn baby, placing doubt in the minds of mothers about the actual risk of drinking while pregnant. When studies are released that suggest alcohol intake can be safe during pregnancy, The Arc takes the opportunity to speak up and educate the public about the very real dangers of drinking while pregnant.

Fetal Alcohol Spectrum Disorders (FASDs) describe the range of effects that can occur in an individual whose mother drank alcohol during pregnancy. These effects can include physical, behavioral, mental and/or learning disabilities with possible lifelong implications. FASD affects an estimated 40,000 infants each year – more than Spina Bifida, Down Syndrome and Muscular Dystrophy combined.

“Why put your baby at risk? Fetal Alcohol Spectrum Disorders are 100% preventable if mothers abstain from drinking during pregnancy. The Arc advocates not drinking during pregnancy, and will continue to push this message because studies like this ignore the fact that completely abstaining takes the risk of having a baby with a Fetal Alcohol Spectrum Disorder off the table,” said Peter V. Berns, CEO of The Arc.

As other opponents of the study highlighted, there are a number of factors that weren’t taken into consideration that warrant the public’s attention. These include the fact that some developmental delays are not detected as young as 5 years old, the differences in metabolism amongst women, and variances in genetic susceptibility.

The Arc advocates for and serves people with I/DD, including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of over 700 chapters across the country promoting and protecting the human rights of people with I/DD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

The Arc, together with the Substance Abuse and Mental Health Services Administration (SAMHSA) Fetal Alcohol Spectrum Disorder Center for Excellence, recruits and supports the Self-Advocates with FASD in Action (or SAFA) Network. SAFA was established a little over a year ago to build and support a network of people with FASDs and give them the platform to be self-advocates.

My Trip to the White House as a Champion for Change

Champions of Change in Washington, DC

Champions of Change at the Embassy of Tribal Nations in Washington, D.C.

By Morgan Fawcett, Self Advocate

I am Lingít, from the Wolf Moiety and Kaagwaantaan from Kook Hít, the Box House. My Lingít name is Sheens and my English name is Morgan Fawcett. I am 19 years old and I live with Fetal Alcohol Spectrum Disorder (FASD). On December 1st, eleven indigenous youth were recognized as Champions of Change at an event at the White House for their work in each of their respective communities. The Champions came from different backgrounds, hometowns, Tribal Nations, and fought for their communities in different ways but they each worked toward the same goal; change, a small word with a huge connotation.  I would like to recognize 10 of the Champions before continuing:

Teressa Baldwin: Native Village of Kiana, LeVon Thomas: Navajo, Madeline Sayet: Mohegan, Desiree Vea: Native Hawaiian, Iko’tsimiskimaki “Ekoo” Beck: Blackfeet, Emmet Yepa: Jemez Pueblo, Lorna Her Many Horses: Rosebud, Tiffany Calabaza: Kewa (Santo Domingo Pueblo), Cassandra Steele: Pomo, and Dallas Duplessis: Alaskan Native.

I was selected as one of the Champions of Change for my family’s efforts to raise awareness and understanding of FASD.  I’m a member of the “Self-Advocates with FASD in Action” network, run by The Arc and the Substance Abuse and Mental Health Services Administration FASD Center for Excellence.  I and the other Champions were brought to Washington, D.C. to be honored for our work and to gain a better understanding of the many ways of leadership. December 1st, the Champions of Change were taken to the Eisenhower Executive Office Building and organized into discussion panels to present our causes to Tribal Leaders and U.S. Government Officials alike. After the panels were completed, we were taken to the West Wing of the White House for a Twitter Question & Answer session. The day was wrapped up with a bus tour of D.C. and a reception, and the events ended after 8 in the evening.

December 2nd, however, was the big day. This day started early in the morning with a trip to the Department of the Interior, to participate in the opening and closing session of the Tribal Leaders Conference put on by the White House. Not only did we get to listen to current legislation and laws that positively affect Tribal Nations and have a basic overview of discussions between the U.S. Government and Tribal Nations, the Champions were able to meet, shake the hand of or hug and take a picture with The President of the United States. Waiting was the hardest part; time seemed to come to a standstill, as time passed, our anticipation grew. But the in the end it was worth the wait. To add to the excitement, President Obama mentioned 3 of the 11 champions in his address to the Tribal Leaders.

To sum up this experience in a few short paragraphs is next to impossible, but in closing I have to say this trip was a wonderful opportunity to grow as a youth leader as well as meet other young people that share a common goal. I wish the best of luck to the other Champions in all of their endeavors. I would like to thank everyone who has helped and supported all of us as we fight to bring about change.

We, as indigenous youth, are riding the winds of change, and we are knocking at your door, but who is willing to answer?

Gunalchéesh ax x’éit yee sa.aaxí (thank you for listening),

Morgan Fawcett

Victims with FASD Highlighted in Academic Journal

Journal of Psychiatry & Law

Many people don’t know about FASD (Fetal Alcohol Spectrum Disorder) or how common it is in the U.S. because it often goes undetected or is misdiagnosed. Similarly, most don’t realize that people with disabilities are more likely to be victims of crime compared to those without disabilities. A new, groundbreaking double issue of the Journal of Psychiatry and Law regarding people with FASD in the criminal justice system is bringing these two “underground” worlds of FASD and victimization together to be dissected and studied under one theoretical roof.

As The Arc’s Project and Information Specialist and an expert on these issues, I had the exciting opportunity to contribute to this issue! Speaking to experts in a wide array of victimization, disability and legal fields served to broaden my own perspective of how to best serve this population, and the co-authors I worked with had a similar experience. I am equally thrilled to be attending a press conference in Washington, D.C. on November 17 hosted by the National Organization on Fetal Alcohol Syndrome (NOFAS) to announce the release of this unique special issue. After the press conference NOFAS is coordinating an “FASD & The Law” policy luncheon to prioritize policy recommendation in the justice arena and develop an action plan after which they will videotape interviews with professionals and experts on the topic. Those video interviews will be available soon on the NOFAS website and possibly distributed via The Arc.

Even though a high percentage of incarcerated juveniles and adults have symptoms of FASD, many lawyers, judges and mental health professionals don’t know much about it so it continues to go unrecognized. This special issue of Journal of Psychiatry and Law helps raise awareness of the serious needs of people with FASD, and gives advocates concrete information that helps them serve victims with an FASD more confidently and compassionately.

Training is a critical tool used to educate parents, self-advocates, victim assistance agencies, court personnel and others about serving crime victims with an FASD. As a follow up to the press conference, experts will offer a free training in the Washington, D.C. area to help practitioners know how to look for red flags that identify individuals with Fetal Alcohol Spectrum Disorders (FASD) who are involved in the court system.  It will address why they may have IQ’s above 70 but have low adaptive behavior skills and describe how courts should treat people who have cognitive and neuro-developmental needs, including the importance of knowing how to provide accommodations. If you are interested in learning more about the journal article, press conference or training, please contact me at ldavis@thearc.org.

Think Before You Drink

People Magazine Cover for July 11, 2011The Arc has a strong history and deep roots in the prevention of intellectual and developmental disabilities (I/DD), especially when it comes to Fetal Alcohol Spectrum Disorder (or FASD), so I was thrilled to see my friend and colleague’s son in this week’s issue of PEOPLE Magazine (Check out the section called “Heroes Among Us”). Dillon Ohlemiller is 18 years old and the adopted son of Melinda Ohlemiller, a staunch advocate for people with FASD who worked for St. Louis Arc for 17 years. She knows first-hand the ins and outs of raising a child with an FASD, and the importance of early detection and providing intervention. That’s why The Arc called on her when we secured funding from the Centers for Disease Control and Prevention to write a curriculum educating others about the secondary disabilities of FASD and how to prevent them. Melinda and I worked together on this project back in the early 2000’s and today are both members of SAMHSA’s (Substance Abuse and Mental Health Services Administration) Expert panel on FASD.

Dillon is a shining example of how early supports and services can make the defining difference in the life of someone with an FASD. He has received support from the St. Louis Arc since he was 8 months old (and is currently in their summer program). At that time, The Arc had a collaborative arrangement with Our Little Haven (the agency featured in the PEOPLE article) to provide intervention and therapy services during Dillon’s early years, and the family also received respite and summer services throughout his childhood and adolescence.

With all The Arc and many other organizations, like SAMHSA and CDC have done in the area of education, some people still don’t realize that FASD is 100 percent preventable. Abstaining from alcohol during pregnancy is the surefire way to prevent a child from having an FASD. To learn more see our fact sheet available on www.thearc.org. Thanks to families like The Ohlemiller’s who openly share their own story, The Arc’s “Think Before You Drink” message is finally getting the attention it deserves!