CREATING A CIRCLE OF HOPE FOR WOMEN AND THEIR FAMILIES

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1 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

2 Disclosure Declarations Name Daphne Colacion, Presenter Kathy Mitchell, Presenter Kerry Mauger, (Planner) Karen Wolf-Branigin, (Manager) Leigh Ann Davis, (Manager) Disclosure 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 Nothing do disclose Nothing to disclose Nothing to disclose Nothing to disclose

3 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).

4 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.

Networks o o Capacity Building Friends of NOFAS Media Outreach o o o o o o o Social Media Training and

5 NOFAS Resource Directory: nofas.org/resources/directory.aspx Clearinghouse o NOFAS Information Clearinghouse Affiliate and Stakeholder Networks o o Capacity Building Friends of NOFAS Media Outreach o o o o o o o Social Media Training and Curriculum Students and professionals Policy and Advocacy Prevention Circle of Hope Birth Mothers Network Public Awareness campaigns

6 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!

Birth defects o Intellectual abilities Brain damage, behavioral problems, lower IQ o

7 Fetal Alcohol Spectrum Disorders 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 (FASD)

8 Fetal Alcohol Spectrum Disorders FAS PFAS ARND ND-PAE Fetal Alcohol Syndrome Partial FAS Alcohol-Related Neurodevelomental Disorder Fetal and Infant Death K. Mitchell, NOFAS 2013 Neurodevelopmental Disorder associated with Prenatal Alcohol Exposure

9 How is FAS and pfas Diagnosed? Alcohol Exposure Face Growth Brain o Developmental Disabilities o Learning Problems o Behavior Problems

10 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.

11 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.

12 Impact of Alcohol Use on the Developing Fetus Adapted from Moore and Persaud, K. Mitchell, NOFAS 2014

13 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, K. Mitchell, NOFAS 2014

indicated by the arrows (portions of the corpus callosum).

15 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 FAS Images courtesy of Dr. S. Mattson 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

16 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

17 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

18 Cognitive, Behavioral, Emotional and other Problems Can Each Appear Across a Continuum of Severity Cognition Behavior Social Skills Speech and Language Emotion Mild Mild Mild Mild Mild 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 anxiety and mood Severe Severe Severe Severe Severe Motor Skills Mild Fine, gross motor skills impairment Severe Lockhart, P. 2006

19 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

20 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.

21 Alcohol Use and Binge Drinking among Women of Childbearing Age - United States, % 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 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 o Average frequency: ~ 3 times per month Average intensity: ~ 6 drinks per occasion

Preventing FASD is up to all of us: Screening and BI Referrals to treatment CHOICES Educate all patients about alcohol use and pregnancy Advancing Alcohol SBI

22 Preventing FASD is up to all of us: 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.

23 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

24 The Scarlett Letter She purposely did this to her own child!

25 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)

26 NOFAS Circle of Hope Birth Mothers Network / mitchell@nofas.org Peer mentoring Support Speakers Bureau Newsletters Private Facebook site for birth moms Webinars

27 FASD Prevention: Caring for and Honoring Women and Their Role Intuitive wisdom Motherhood: Sacred vessels of the future people Healers Caretakers Artisans Visionaries

28 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.

29 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.

30 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.

31 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

32 It s the stories that will create the change. If you want to serve, you need to begin with the stories. Bill Clinton

33 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

34 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 Join the NOFAS Facebook page Tweet Refer women to join the Circle of Hope

Resources AAP FASD Toolkit www.aap.org/fasd CDC FASD APP: http://itunes.apple.

35 Resources AAP FASD Toolkit CDC FASD APP: ACOG Webpage on alcohol and women:

36 Contact me ANYTIME: Kathy Mitchell NOFAS.org Washington, DC

37 Lake County Tribal Health Consortium Gouk-Gumu Xolpelema Tribal Home Visiting Program

38 PARENT-CHILD ASSISTANCE PROGRAM INTERVENTION AT LAKE COUNTY TRIBAL HEALTH CONSORTIUM Daphne Colacion, Tribal Home Visiting Program Coordinator August 13, 2015

40 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

41 NEEDS ASSESSMENT Alcohol and drug free pregnancies were the Lake County tribal community s top priority. ~ Lake County Tribal Health Community Needs Assessment 2011

42 Overall Lake County ACE Scores for Women ACE Category Pregnant ANAI Women 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%

43 OVERALL LAKE COUNTY ACE SCORES FOR WOMEN

44 Now the healing can begin, Oh. ~Tribal Elder, Elem Indian Colony during LCTHC s Public Forum on the 2011 Needs Assessment July 18, 2011

& Flexible to Community Based on Relationship

45 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

46 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.

47 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%

48 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

49 I ve seen people engaging that I have never seen engage before. ~Merrill Featherstone, THV Clinical Director, LCTHC Human Services Director for 21 years

50 Gouk-Gumu Xolpelema Home Visiting Program Voluntary Relationship Based Goals Focused Utilizing Motivational Interviewing (MI) Reflective Supervision Nurturing Parenting & NAFFA Enhancements Serving Dads

51 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

52 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

53 I feel like I did something, it maybe small but I did something. ~ Client who signed up for an Intensive Outpatient TX program.

54 For more information on the Parent Child Assistance Program (PCAP) visit: Washington.edu/pcapuw/

56 Learn more about FASD prevention by: Checking out our website: Signing our FASD Prevention pledge on our website: Taking our free CEU course on FASD prevention: If you re a health professional - order or download our free FASD prevention toolkit: Contact Info: mauger@thearc.org

FASD: A Disorder Pediatricians can Diagnosis and Prevent!

FASD: A Disorder Pediatricians can Diagnosis and Prevent! Kathleen Tavenner Mitchell, MHS, LCADC Vice President and National Spokesperson National Organization on Fetal Alcohol Syndrome Faculty/Presenter