CREATING A CIRCLE OF HOPE FOR WOMEN AND

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
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Social Media
Training and Curriculum
Students and professionals
Policy and Advocacy
Prevention
Circle of Hope Birth Mothers Network
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
Fetal Alcohol Spectrum Disorders
FAS
PFAS
Fetal Alcohol
Syndrome
Partial FAS
ARND
ND-PAE
Neurodevelopmental
Alcohol-Related
Neurodevelomental Disorder associated
with Prenatal Alcohol
Disorder
Exposure
Fetal and Infant Death
K. Mitchell, NOFAS 2013
How is FAS and pFAS Diagnosed?
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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).
Normal
FAS/PEA
Images courtesy of Dr. S. Mattson
K. Mitchell, NOFAS 2014
FAS
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
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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
Cognitive, Behavioral, Emotional and other Problems Can
Each Appear Across a Continuum of Severity
Poor insight and judgment, poor planning, impairment in
short term memory and processing speed
Cognition
Mild
Severe
Aggression, temper outbursts, impulsivity
Behavior
Social
Skills
Mild
Mild
Speech and Mild
Language
Emotion
Motor Skills
Poor boundaries, difficulty reading facial expressions
or body language
pragmatic speech, receptive and expressive
language
Severe
Severe
Severe
anxiety and mood
Mild
Severe
Fine, gross motor skills impairment
Mild
Severe
Lockhart, P. 2006
Common Disorders identified with
FASD
• Autism/Aspergers’s
Disorder
• Attention Deficit
Hyperactivity Disorder
(ADHD)
• Borderline Personality
Disorder
• Attachment-Bonding
Disorder
• Depression
• Learning disability
• Oppositional-Defiant
Disorder
• Post Traumatic Stress
Disorder (PTSD)
• Receptive-Expressive
Language Disorder
• Conduct 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
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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
o
o
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Aged 35-44 years (14.3%)
White (8.3%)
College graduates (10.0%)
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
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Average frequency: ~ 3 times per month
Average intensity: ~ 6 drinks per occasion
Preventing FASD is up to all of us:
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Screening and BI
Referrals to treatment
CHOICES
Educate all patients about alcohol use and pregnancy
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
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 / mitchell@nofas.org
Peer mentoring Support
Speakers Bureau
Newsletters
Private Facebook site for
birth moms
• Webinars
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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
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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/fetalalcohol-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
mitchell@nofas.org
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
TRIBAL MIECHV
 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
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
Gouk-Gumu Xolpelema Home Visiting Program
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Voluntary
Relationship Based
Goals Focused
Utilizing Motivational Interviewing (MI)
Reflective Supervision
Nurturing Parenting & NAFFA Enhancements
Serving Dads
Work with Families
• Help Them Get Basic Needs Met
Setting Goals
Connecting to Resources
 Work with dads
• 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:
mauger@thearc.org