Some of the 345,000 Californians with Fetal Alcohol Spectrum Disorder

The California FASD Task Force

Chaired by Shirley Dove, Past President of The Arc of California

Next Meeting: February 8, 2008 Agenda  Latest Grant Proposal

 

Attention:  The Fetal Alcohol Spectrum Disorders: Curriculum for Addiction Professionals: Level 2 (CAP 2), is the product of a joint effort of the SAMHSA Fetal Alcohol Spectrum Disorders (FASD) Center for Excellence and the National Organization on Fetal Alcohol Syndrome (NOFAS). This curriculum aims to help addictions-focused professionals prevent, recognize, and address FASD. It provides training for social workers, certified addiction counselors, psychologists, psychiatrists, and others in the treatment and recovery field. This curriculum has been designed for professionals who work with men, women, and adolescents in treatment, though some of the competencies (e.g., Prevention) focus on issues specific to women. CAP 2 is currently available to order from NCADI.  To order, access the following link at http://ncadistore.samhsa.gov/catalog/productDetails.aspx?ProductID=17776. posted by Amber Kesterson

 

Mission Statement (As of August 16, 2005)

The mission of the California FASD Task Force is to advance the effective prevention and treatment of fetal alcohol spectrum disorders (FASD).  The task force is an independent, public-private partnership of parents and professionals from many disciplines committed to improving the lives of Californians affected by FASD and eliminating alcohol use during pregnancy.  Through innovation, education, advocacy and research, the task force provides leadership in mobilizing broad-based support and sustainable resources statewide to lessen the lifelong physical, psychological, emotional and economic burden of this preventable public health problem on individuals, families and communities.

Current Documents

 

Strategic Plan

 

• Strategic Plan (Draft)  (posted December 12, 2005)
  Consultant Notes: This document is final pending the addition of the affiliations of Jan and Sue (Goal 4), an addition of a champion for Goal 6, and confirmation that all listed champions are willing and able to serve in that capacity.,
• Strategic Plan Summary & SWOT Analysis (posted December 12, 2005)
  Consultant Notes: This is the material I agreed to draft for the strategic planning document in addition to the strategic plan and action plan, updated from the 10.29.05 version to include the 11.01.05 meeting.  Once you/your designate have compiled the various components of the document from the authors, I strongly recommend careful editing for accuracy, completeness, good flow, consistency and lack of duplication.  Most of all, before dissemination, review the document for impact—it might be worthwhile to pretest it with and get feedback from a stakeholder who has not been involved in the strategic planning process.  In addition to serving as a guide for the task force, your strategic planning document can be a useful marketing tool for partnership and resource development.  In presentation and content, it should make a statement! 
• Action Plan (posted December 12, 2005)
  Consultant Notes: This is a rough draft based on the recommendations of the November 1 workgroups.  It needs a few refinements before it is ready for stakeholder review and comment:
  1. There were no activities listed on the worksheet for goal 1, though the workgroup did identify many activity partners.
  2. The spelling of all names should be checked as I had difficulty reading handwriting on some worksheets.
  3. Proposed activity leads should be asked whether they are willing and able to serve in that capacity.
  4. The recommended next step is to circulate the revision to all stakeholders for review and comment, or to post the revision on the website and e-mail all stakeholders, directing them to the website and inviting them to review and comment.

 

Previous Meeting Documents

 

• Task Force Consensus
• Agenda for November 1, 2005
• Action Planning Presentation: CA FASD Task Force
• Strategic Plan Element Commitments
• June 16, 2005 Minutes (including member commitments)
• June 16, 2005 meeting additional notes
• Strategic Planning PowerPoint Presentation
• Strategies Worksheet

 

Needs Assessments

 

Kathy Page, Ph.D. (Financial Impact Information) return to top

The study on the various cost estimates for FASD.  The conservative figure winds up at $2 million per person, and leaves out a lot of what we know should also be included--if I'm reading it right, the following are NOT included in the cost estimate:

1. Medical services for physical anomalies, such as visual problems, kidney and genital tract problems, dental and skeletal defects, anesthesiology services, and some physician costs during the first year of hospitalization.
2. Welfare payments to the family.
3. Mental health services.
4. Criminal justice (e.g., trial and incarceration, which can cost about $20,000 per year).
5. Services for mild physical problems and learning disabilities.
6. Lost productivity of caregivers and persons with FASD.

 

Cynthia Jaynes (Including Alcohol Related Questions Other State Surveys) return to top

Here are the FASD awareness questions we (CA Alcohol and Drug Programs) are proposing to include on the Dept. of Health Services' California Women's Health Survey.  These questions are placed in proximity to questions related to pregnancy, not alcohol consumption.

1. How often is it okay for a woman to drink (alcohol) during pregnancy?  Open-ended responses, interviewer to key
2. Is it ever too late to quit drinking or cut down during pregnancy even if it's later in pregnancy?  Yes, No, don't know, refused

These are not the final versions of the questions and we can add one other.  Any suggestions or guidance from the FASD Task Force is welcomed.

 

Tony Anderson (Information on Secondary Effects of FASD) return to top

The following is a preview and order form to purchase the book, The Challenge of Fetal Alcohol Syndrome, Overcoming Secondary Disabilities, Edited by Streissguth and Jonathan Kanter of the Department of Psychiatry and Behavioral Sciences University of Washington School of Medicine.   This was the resource we talked about during our last meeting related to Secondary Effects.  However, this is only available for purchase.  “In the first book of its kind, experts describe how to help people with Fetal Alcohol Syndrome. A summary of recent findings and recommendations is presented by the team who conducted the largest study ever done on people of all ages with Fetal Alcohol Syndrome and Fetal Alcohol Effects. Twenty-two experts, conference presenters from the fields of human services, education, and criminal justice, respond by describing their solutions to this problem of a birth defect that targets the brain and has lifelong consequences. This book acknowledges the diverse and multifaceted needs of people with FAS/FAE across the lifespan. It will be valuable for parents and the many professionals working with people with FAS/FAE."

 

Kathy Page, Ph.D.  return to top

This is the article by Ira Chasnoff that takes thousands of women throughout CA and concludes that 30% drink until they discover their pregnancy, and half of those continue to drink during the rest of the pregnancy.  The article was published in the Journal of Perinatology 2005; Vol. 25; pp. 368-374.  The title is "The 4P's Plus (c) Screen for Substance Use in Pregnancy:  Clinical Application and Outcomes".

 

Sharon Dorfman (Current Screening of Youth in the Juvenile Court System)  return to top

Northrop Grumman Health Solutions has awarded subcontracts to five juvenile courts to assess at intake whether a juvenile should be referred for FASD diagnostic evaluation.  In these juvenile court systems, a variety of staff use a range of screening tools designed to capture information on cognition, health status, mental health, substance abuse, services received and other relevant details.  Detailed information about current screening tools these juvenile court systems routinely use, access to records on youth or any aspect of the juvenile court initiative is available from Catherine Hargrove at Northrop Grumman Health Solutions (301.527.6539 or [email protected]).

 

Dr. Ed Riley (Prevalence Data)  return to top

Attached is an article on the rates of alcohol and drug positive urines at the time of delivery.  Positive alcohols show up in about 7% of the deliveries and it must be remembered that this is very conservative since you would have had to consumed alcohol fairly recently prior to showing up for delivery for alcohol to still be detected in urine.  Finch Alcohol and Delivery, here is a link to similar data as well. http://content.nejm.org/cgi/content/full/329/12/850

 

Tony Anderson (National Task Force Recommendations)  return to top

In 1999, Congress directed the Secretary of the U.S. Department of Health and Human Services to convene the National Task Force on FAS and FAE (the Task Force). Following are fifteen recommendations made by the Task Force, in their report Defining the National Agenda for Fetal Alcohol Syndrome and Other Prenatal Alcohol-Related Effects. 

Task Force recommendations are as follows:

1. Develop a clinical case definition for diagnosing FAS, including a neurocognitive phenotype, and begin work on establishing a clinical case definition for ARND.
2. Develop a uniform surveillance case definition for FAS and begin formative work on a uniform surveillance case definition for ARND.
3. Develop a white paper to review and summarize relevant epidemiologic research addressing the scope of the problem, prevalence, risk factors, impediments to diagnosis, and number of women at risk for an alcohol-exposed pregnancy.
4. Develop a white paper to review the evidence for effective prevention and treatment strategies for women at risk for or engaging in prenatal alcohol use. The report should describe women at risk, identify barriers to implementing effective strategies, and proscribe against implementation of untested models or models that are not evidence-based.
5. Develop a health services research agenda focusing on families of persons with FAS and ARND that address such concerns as why certain families do well and stay together, the impact of FAS and ARND on families relative to other birth defects, and how the legal system deals with FAS and ARND.
6. Develop a science research agenda, including translational research that brings basic research findings to the clinical domain (e.g., neuroimaging), and address concerns of maternal and fetal susceptibility to FAS and ARND.
7. Complete a profile of state, tribal, and private entities with existing services for persons with FAS and ARND and women at risk for an alcohol-exposed pregnancy; the profile should include eligibility criteria and ongoing educational efforts for professionals regarding FAS and ARND.
8. Develop an agenda that will lead to a national standard of care for persons with FAS and ARND during their life span, including best practices and plans for dissemination of standards to relevant health-care professionals.
9. Endorse a national coordinated media campaign and request that ICCFAS recommend how to coordinate this effort among all federal agencies.
10. Endorse the U.S. Surgeon General's Advisory statement regarding drinking during pregnancy, and urge that the statement be reissued as part of the coordinated national media campaign.
11. Contact the Office of National Drug Control Policy to recommend inclusion of information regarding FAS and ARND in their resource materials.
12. Develop a checklist of essential state services needed to prevent FAS and ARND, to treat persons with FAS and ARND and their families, and to better identify women at risk for having an alcohol-exposed pregnancy.
13. Develop and disseminate a plan for systemwide education regarding prenatal alcohol-related disabilities to be offered to professionals in health services, judicial services, education, child welfare, vocational rehabilitation, juvenile justice, maternal child health clinics, and disabilities services and prevention.
14. Develop and disseminate a kindergarten--grade 12 curriculum to address FAS, ARND, and prenatal alcohol use.
15. Investigate incorporating information related to prevention and treatment of FAS and ARND into the credentialing requirements for teachers, juvenile justice workers, lawmakers, and health-care professionals (e.g., include FAS-related questions on state board exams).

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