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CREATING A CIRCLE OF HOPE FOR WOMEN AND
THEIR FAMILIES
Kathleen Tavenner Mitchell, MHS, LCADC
Vice President and National Spokesperson – NOFAS
And
Daphne Colacion
Tribal Home Visiting - Program Coordinator
Disclosure Declarations Name Disclosure
Daphne Colacion, Presenter The Gouk-Gumu Xolpelema Tribal is funded under grant # 90 TH 0003 by the Affordable Care Act of 2010, awarded by the Office of Child Care, Administration for Children and Families, U.S. Department of Health and Human Services (HHS) . The opinions, findings, conclusions, or recommendations expressed in this presentation are those of the contributors and do not necessarily represent the official position or policies of the HHS
Kathy Mitchell, Presenter Nothing do disclose
Kerry Mauger, (Planner) Nothing to disclose
Karen Wolf-Branigin, (Manager) Nothing to disclose
Leigh Ann Davis, (Manager) Nothing to disclose
NOFAS Vision
• The vision of the National Organization on Fetal Alcohol
Syndrome (NOFAS) is a global community free of
alcohol-exposed pregnancies and a society supportive
of individuals already living with Fetal Alcohol
Spectrum Disorders (FASD).
NOFAS.org
• The NOFAS WEEKLY ROUNDUP is published to provide a spotlight on media, industry research, and events pertinent to FASD and alcohol exposed pregnancies.
• NOFAS Facebook Page, COH Facebook, & Twitter account.
• Alcoholfreepregnancy YouTube Channel 188 interviews
Follow Us!
WWW.NOFAS.ORG
NOFAS Resource Directory:
nofas.org/resources/directory.aspx
www.youtube.com/user/alcoholfreepregnancy
• Clearinghouse o NOFAS Information Clearinghouse
• Affiliate and Stakeholder Networks o Capacity Building o Friends of NOFAS
• Media Outreach o Social Media o Training and Curriculum o Students and professionals o Policy and Advocacy o Prevention o Circle of Hope Birth Mothers Network o Public Awareness campaigns
The effects of FASD last a lifetime
FASD is the leading cause of intellectual disability and is a leading cause of birth defects and learning and behavioral disorders.
FASD’s can be PREVENTED!
Fetal Alcohol Spectrum Disorders
(FASD) • Caused by drinking alcohol during
pregnancy
• Alcohol is a toxic substance – if a pregnant mother drinks, it can affect the baby in many ways:
o Birth defects
o Intellectual abilities
• Brain damage, behavioral problems, lower IQ
o Characteristic facial features
• These are life-long effects – the baby does not “outgrow” them
FAS PFAS ARND ND-PAE
Fetal Alcohol
Syndrome Alcohol-Related
Neurodevelomental
Disorder
Partial FAS
Fetal and Infant Death
Neurodevelopmental
Disorder associated
with Prenatal Alcohol
Exposure
K. Mitchell, NOFAS 2013
Fetal Alcohol Spectrum Disorders
How is FAS and pFAS Diagnosed?
• Alcohol Exposure
• Face
• Growth
• Brain
o Developmental Disabilities
o Learning Problems
o Behavior Problems
FASD FACTS • FASD annual births are higher than Down Syndrome, Cerebral
Palsy, Cystic Fibrosis, Spina Bifida and Sudden Infant Death Syndrome—COMBINED.
• Some believe that cocaine is the primary substance abused by pregnant women, although this is untrue. The % of pregnant women that use alcohol is more than double of those that use cocaine while pregnant.
• In 1996, the Institute of Medicine reported “Of all substances of abuse (including heroin, cocaine, marijuana), alcohol produces by far the most serious neurobehavioral effects in the fetus.”
Alcohol is a teratogen • (def. an agent that can cause malformations of an
embryo or fetus). Alcohol can cross the placenta and
enter fetal circulation, damaging cells and the DNA
they contain.
Impact of Alcohol Use on the
Developing Fetus
Adapted from Moore and Persaud, 1993.
K. Mitchell, NOFAS 2014
Alcohol & SIDS
“Alcohol use while pregnant is a leading causal
factor in both fetal and infant death.”
• Ken Warren, PhD, Acting Director, NIAAA
NOFAS interview, www.nofas.org
K. Mitchell, NOFAS 2014
Visualization of the brain of a typical (A) and two
children exposed to alcohol (B,C) shows permanent
loss of the tissue indicated by the arrows (portions of
the corpus callosum).
Images courtesy of Dr. S. Mattson
Normal FAS/PEA FAS
K. Mitchell, NOFAS 2014
Summary of Neuropsychological
Findings • Heavy prenatal alcohol exposure is associated with a
wide range of neurobehavioral deficits including
visuospatial functioning, verbal and nonverbal learning,
attention, and executive functioning
• Children with and without physical features of the fetal
alcohol syndrome display qualitatively similar deficits
Lifelong Behavioral profile of FASD
• Reduced IQ
• Learning deficits
• Increased activity and reactivity
• Perseverative
• Attentional deficits
• Poor fine and gross motor skills
• Developmental delays
• Feeding issues
• Hearing deficits
• Sensory integration
Poor insight and judgment, poor planning, impairment in
short term memory and processing speed
Aggression, temper outbursts, impulsivity
Poor boundaries, difficulty reading facial expressions
or body language
pragmatic speech, receptive and expressive
language
Mild
Mild
Mild
Mild
Severe
Severe
Severe
Severe
Mild Severe anxiety and mood
Cognitive, Behavioral, Emotional and other Problems Can
Each Appear Across a Continuum of Severity
Fine, gross motor skills impairment
Mild Severe
Cognition
Behavior
Social
Skills
Speech and
Language
Emotion
Motor Skills
Lockhart, P. 2006
Common Disorders identified with
FASD • Depression
• Learning disability
• Oppositional-Defiant
Disorder
• Post Traumatic Stress
Disorder (PTSD)
• Receptive-Expressive
Language Disorder
• Conduct Disorder
• Autism/Aspergers’s Disorder
• Attention Deficit
Hyperactivity Disorder
(ADHD)
• Borderline Personality
Disorder
• Attachment-Bonding
Disorder
What happens in the womb can effect
our health through the lifespan (Riley)
• Increased insulin/diabetes (Chen)
• Greater risk of cancers (Sakar)
But, we still know little about long term health effects……
Alcohol Use and Binge Drinking among Women of Childbearing Age - United States, 2006-2010 • 7.6% of pregnant women and 51% of nonpregnant
women reported drinking alcohol in the past 30 days
• Among pregnant women, the highest estimates
of use were among those who were: o Aged 35-44 years (14.3%)
o White (8.3%)
o College graduates (10.0%)
o Employed (9.6%)
• 1.4% of pregnant women and 15.0% of nonpregnant women
reported binge drinking in the past 30 days
• Among pregnant and nonpregnant binge drinkers: o Average frequency: ~ 3 times per month
o Average intensity: ~ 6 drinks per occasion
Advancing Alcohol SBI & CHOICES in
American Indian and Alaska Native Populations through Training & Technical Assistance
CDC is funding clinic sites to offer CHOICES and alcohol SBI
Preventing FASD is up to all of us: • Screening and BI
• Referrals to treatment
• CHOICES
• Educate all patients about alcohol use and pregnancy
Why Don’t Doctors do more to educate &
prevent FASD? Don’t ask; Don’t tell
Doctors are convinced women are “too complicated” to treat
Once an addict always an addict.
………..Why bother? Women are fearful of
prosecution Women don’t want to be
labeled as an addict or alcoholic
Women just don’t “get it”- Social, cultural and media messages vary
The Scarlett Letter
• She purposely did
this to her own
child!
Why did you drink while pregnant?
• I knew I shouldn’t use drugs, but I thought drinking was okay. 21.9%
• Doctor never said I shouldn’t drink. 21.9%
• I was an addict in active addiction. 18.8%
• Doctor said I should drink. 9.4%
• I was an addict and ashamed. 9.4%
• I am an alcoholic, drank before I knew I was pregnant, and stopped when I found out. 6.3%
• Thought it was ok to drink, just not excessively. 3.1%
• I was an addict and could not get into treatment. 3.1%
(COH/NOFAS 2012 n = 92)
NOFAS Circle of Hope
Birth Mothers Network
www.nofas.org/coh / [email protected]
• Peer mentoring Support
• Speakers Bureau
• Newsletters
• Private Facebook site for
birth moms
• Webinars
FASD Prevention: Caring for and Honoring
Women and Their Role
• Intuitive wisdom
• Motherhood: Sacred
vessels of the future
people
• Healers
• Caretakers
• Artisans
• Visionaries
Re-cov-er-y
• A return to a normal condition
• Something gained or restored
• EMPOWERMENT
• The process of increasing the capacity of individuals to
make choices into desired actions and outcomes.
Self Actualization
Treatment, 12 step, PCAP or other recovery:
•Physical needs
•Safety and security
COH membership
•LOVE and BELONGING-feeling connected
•Self-esteem
•Self: sense of purpose, morality, inner peace
Families raising a child with an FASD face
many challenges
• Most cases of FASD are never diagnosed. Symptoms of
FASD are identified and addressed. But rarely is alcohol
identified as the causal factor.
• Few physicians, healthcare professionals, disability
professionals, psychologists, therapists, etc. are
trained in how to identify FASD.
Even with a diagnosis, systems of care
aren’t educated on FASD
• Children with an FASD often don’t fit in with
their peers-nor do they fit in with children
with other disabilities
• School systems do not want to provide
resources for students that look “just fine”
• Educators are unaware of teaching strategies
“It’s the stories that
will create the
change. If you want
to serve, you need to
begin with the
stories.” – Bill Clinton
Practice Compassion
They are doing the best that the can, with the tools they have been given.
• Be Gentle * Listen to their story
• Help them to find safe haven ~ if it’s obvious they need help to stop drinking ~ help them find treatment
• Go the extra mile ~ check in with them
• Never under-estimate the power of giving just 2 minutes of your time ~ let them know they matter
How to Get Involved • Consider becoming a NOFAS Affiliate
• Become a friend of NOFAS
• Sign up for the Weekly Round Up Newsletter for updates
• Visit Us. Like Us. Follow Us. – Go to www.nofas.org
– Join the NOFAS Facebook page
– Tweet us @NOFAS_USA
• Refer women to join the Circle of Hope
Resources
AAP FASD Toolkit – www.aap.org/fasd
CDC FASD APP: http://itunes.apple.com/us/app/fetal-alcohol-spectrum-disorders/id517058288?mt=8&ls=1
ACOG Webpage on alcohol and women:
www.womenandalcohol.org
Contact me
ANYTIME:
Kathy Mitchell NOFAS.org
Washington, DC
Lake County Tribal Health Consortium
Gouk-Gumu Xolpelema
Tribal Home Visiting Program
PARENT-CHILD ASSISTANCE PROGRAM INTERVENTION AT LAKE COUNTY TRIBAL HEALTH CONSORTIUM
Daphne Colacion,
Tribal Home Visiting Program Coordinator
August 13, 2015
September 2010 Received Tribal MIECHV Grant Requirements:
• Comprehensive Community Needs Assessment
• Chose Evidenced Based Home Visiting Model to Meet the Needs of Tribal Communities
• Benchmark Plan
• Rigorous Evaluation
June 2012 HV Program Implementation began
TRIBAL MIECHV
NEEDS ASSESSMENT
Alcohol and drug free pregnancies were the Lake County tribal community’s top priority.”
~ Lake County Tribal Health Community Needs Assessment 2011
Overall Lake County ACE Scores for Women
ACE Category Pregnant ANAI Women 2009-12
Women ACE Survey Respondents*
Emotional Abuse 57% 53%
Physical Abuse 53% 45%
Sexual Abuse 45% 44%
Lack of Affection 42% 46%
Neglect 42% 29%
Abandonment 67% 53%
Domestic Violence 51% 28%
Alcohol or Drugs in the home 78% 56%
Mental health issues 30% 41%
Imprisonment of family member 36% 19%
OVERALL LAKE COUNTY ACE SCORES FOR WOMEN
“Now the healing can begin, Oh.”
~Tribal Elder, Elem Indian Colony during LCTHC’s Public Forum on the 2011 Needs Assessment
July 18, 2011
EVIDENCED BASED HOME VISITING MODEL SELECTION SUMMER 2011
Case Management FASD Prevention Focus Adaptable & Flexible to Community Based on Relationship between Advocate & Client
County-wide Parenting Curriculum
Native families are empowered to strengthen their emotional, mental, physical, social and spiritual wellness
and increase connections to their culture and community so that parents and children are safer, healthier,
happier and more self-sufficient. Reduce Native Children’s exposure to tobacco alcohol and drugs through their family and the community.
Increase Native parents’ knowledge of child development and parenting, and improve parent-child interactions.
Strengthen connections for Native families to community resources, information and services, and connections to community and Tribal activities.
Families Served
FROM JUNE 2012 TO PRESENT
• Serving 77 Individuals: 53 Moms & 24 Dads,
• 129 Children Aged 0-5, Representing 63 Families
• 47% of Women Enrolled Pregnant
• 45% of Women were First Time Moms (18-37 age range)14 were pregnant with their first child
• Attrition Rate of 30%
Participant Intake Status
• 100% Live Below the Federal Poverty Guideline
• 75% Unemployed
• 84% Never Married
• 53% Did Not Receive a High School Diploma
Data Collected During Program Participation
• 46% Experienced Abuse as Children*
• 41% Reported Depression
• 52% Reported IPV or DV (past or present)
• 33% Reported Substance Use Problems
• 74% Former or Current (54%), Tobacco Smokers
“I’ve seen people engaging that I
have never seen engage before.”
~Merrill Featherstone, THV Clinical Director,
LCTHC Human Services Director for 21 years
• Voluntary
• Relationship Based
• Goals Focused
• Utilizing Motivational Interviewing (MI)
• Reflective Supervision
• Nurturing Parenting & NAFFA Enhancements
• Serving Dads
Gouk-Gumu Xolpelema Home Visiting Program
Work with Families
Work with dads
• Help Them Get Basic Needs Met Setting Goals Connecting to Resources
• Give Them Parenting/Child Development Information and Support
Nurturing Parenting Lessons Information on Bonding & Attachment Role Modeling Play Areas
GOUK-GUMU XOLPELEMA HOME VISITING PROGRAM SERVICES
Intensive Case Management Weekly Home Visits
Family Driven Goal Setting Parenting Education in the Home
Weekly Parent-Child Activity Group & NAFFA Groups
Transportation Advocacy
Connecting to Community Resources & Services
Quarterly Newsletter Family Dinners
Annual Community Events Community FASD Education
“I feel like I did something, it maybe small but I did something.”
~ Client who signed up for an Intensive
Outpatient TX program.
For more information on the Parent Child Assistance Program (PCAP) visit:
http://depts. Washington.edu/pcapuw/
Learn more about FASD
prevention by: • Checking out our website:
• www.thearc.org/FASD-Prevention-Project
• Signing our FASD Prevention pledge on our website:
• www.thearc.org/FASD-Prevention-Project
• Taking our free CEU course on FASD prevention:
• www.thearc.org/FASD-Prevention-Project/resources/courses
• If you’re a health professional - order or download our free
FASD prevention toolkit:
• www.thearc.org/FASD-Prevention-Project/resources/toolkit
Contact Info:
