Resources for Families Living with FASD:
What's Out There?
Kathy Mitchell, NOFAS Vice-President
Andy Kachor, NOFAS Communications Director
Objectives
Participants will:
1. Learn about the existing resources available for families
living with FASD.
2. Get information on FASD diagnosis and what to do
next.
3. Learn how to access resources.
4. Learn about free and low-cost materials and resources.
About NOFAS
Mission:
NOFAS prevents FASD, raises awareness about the risk
of prenatal alcohol exposure, and supports
individuals, families, and communities living with FASD.
Vision:
The vision of NOFAS is a global community free of
alcohol-exposed pregnancies and a society
supportive of individuals already living with FASD.
Introduction
• This webinar will review resources that are currently
available.
• Although there are many materials available,
unfortunately, they may not meet every need.
Introduction
• It is easier to find information and materials than to
find a local FASD-informed service provider.
• Therefore, families need to become experts in
locating FASD-informed providers.
NOFAS Resource Directory
NOFAS has a directory of resources listed by state.
NOFAS Resource Directory
Categories:
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Diagnostic Services
Treatment
Advocacy/Support
Support Groups/Family Contacts
Alcoholism/Addiction
NOFAS Resource Directory
New NOFAS Resource Directory Search Form
Parent Support Groups
Many parent support groups can be found through
the NOFAS Resource Directory or by contacting
members of the NOFAS Affiliate Network.
NOFAS Affiliate Resources
NOFAS Affiliate Resources
NOFAS has over 40 affiliates that provide additional
resources to families living in their geographic area.
Consideration
Dealing with uninformed providers can be frustrating.
Search the NOFAS Resource Directory or contact
NOFAS affiliates to locate FASD-informed service
providers and professionals in your area.
Families often need to inform the provider about
FASD.
Getting an FASD Diagnosis
• A formal diagnosis is a starting point for meeting
FASD-specific needs.
• Find a diagnostician.
• Use the NOFAS Resource Directory.
Guidelines for Referral
and Diagnosis
Fetal Alcohol Syndrome:
Guidelines for Referral and
Diagnosis
• Considerations for a Referral for
an FAS Diagnostic Evaluation
• Services Appropriate for
Affected Individuals and their
Families
DSM and ICD Coding
FASD is included
in the DSM-5 and
ICD-10-CM.
These codes are
needed to get
reimbursement
for medical
services.
Intervention Brochure
CDC Intervention Brochure: 4 Programs that work
Copies are available from NOFAS.
8 Magic Keys
8 Magic Keys: Strategies for Students with FASD
DVD available from NOFAS.
Consideration
Don’t limit your search to only resources that are
specific to FASD by name.
Look into:
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Disability rights groups
Special education advocacy
General housing assistance
General employment assistance
Sharing Personal Stories
Get to Know Me: Interview Series
To eliminate the stigma
of FASD and to feature
individuals living with
an FASD and
succeeding.
Interviews include a
wide range of ages
and backgrounds
NOFAS Videos
Video
Interviews with
individuals with
FASD, as well as
FASD experts
from a range of
disciplines.
YouTube
channel:
Alcohol-free
Pregnancy
NOFAS Videos
DVDs available from NOFAS
Legal Issues
The NOFAS website includes a dedicated criminal
justice webpage:
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Information
Resources
Videos
Webinars
Legal Issues
• American Bar Association
(FASD Resolution)
• FASD Experts (Forensic)
• ACLU
• National Disability
• Rights Network
Consideration
• Look into support for other developmental
disabilities such as Attention Deficit Hyperactivity
Disorder (ADHD) services.
• Treatment not specifically labeled for FASD may
benefit the individual and indirectly help their FASDrelated issues.
Resources for Parents
The NOFAS website has many resources for parents
and caregivers: www.nofas.org/parents.
The website is constantly being updated and includes
many resources, such as:
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Materials
Guidebooks
General Strategies
Resources for Children and Adults
Programs
Resources for Parents
Resources are
organized by
category.
These listings are
continually being
updated.
Curricula for Teaching Students
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Triumph: Through the Challenges of Fetal Alcohol Syndrome Teacher
and Parent Workbook
The NOFAS Ohio Affiliate, Double ARC has developed and tested
separate training curricula for parents and teachers.
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Fetal Alcohol Spectrum Disorders Educational Strategies Handbook
The Fetal Alcohol Spectrum Disorders (FASD) Education Strategies
Handbook is a product of the National Organization on Fetal Alcohol
Syndrome-South Dakota (NOFAS-SD) at the Center for Disabilities.
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All About Me Booklet
This booklet was produced by the Bluegrass Prevention Center
through the Sycamore Project: Kentucky’s Prevention Enhancement
Site for Fetal Alcohol Spectrum Disorders.
Teaching Math
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The Math and Interactive Learning Experience Program (MILE)
Created to support, educate, and empower caregivers and
teachers to work with children to improve behavior and arousal to
achieve learning readiness and math skills. For more information on
how to receive training to become a MILE instructor or more
information about this program, email Dr. Taddeo at
etaddeo@emory.edu or call 404-712-9800.
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Practical Money Skills for Life
Approved by the Council for Exceptional Children, these lesson plans
enable students with learning disabilities to gain important personal
finance skills.
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Math is Fun
Interactive math site for teaching essential math skills.
Improving Attention
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Attention building games for kids with special needs
Use these cognitive exercises to help your child build concentration
and improve their symptoms.
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Fourteen 15-Minute Activities
From storytelling to problem solving, these activities can be used to
help fill in the dreaded gaps that are experienced between lessons
or activities.
Improving Social Skills
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The Families Moving Forward (FMF) Program
Helps children with FASD, their families, and the professionals who
care for them. It is a positive parenting program designed for children
from ages 3 to 13 (approximately).
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Good Buddies
The social deficits that are often involved with FASDs can have a
significant negative impact on children who are not able to make or
keep friends. Good Buddies was developed to give children with an
FASD social skills training to help make this process easier. You can
order the Good Buddies Trainer and Therapist Workbooks by
contacting moconnor@mednet.ucla.edu or 310-206-6528.
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Improving Social Behavior
Some children and adults with special needs struggle in the area of
social interactions. This long list of activities can help teach children
to successful with social exchanges.
Improving Fine and Gross
Motor Skills
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Monster Punching Bag Encouraging Gross Motor Skills
Create a monster punching bag from things you have in your home
to encourage your child to work on their gross motor skills.
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Occupational Therapy Website - Pick skill you want to work on and
the materials you have, and site will recommend an activity
This activity works on pincer grasp by sorting different colored ribbons
using tweezers.
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Activities to Promote Fine Motor Skills
Learn about materials that can promote fine motor skills along with
some activities to do with them.
Emotional Regulation
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PACT - Parents and Children Together:
The Parents and Children Together (PACT) intervention was designed
to help children with FASDs and their parents team strategies to cope
with deficits in self-regulation and executive functioning. For more
information about PACT, visit www.childstudy.org or email
irachasnoff@gmail.com.
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Strategies to Help Kids Calm Down
http://www.encourageplay.com/blog/10-strategies-to-help-kidscalm-down
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The Incredible 5 Point Scale
This unique hands-on activity helps students who are highly anxious
cope with their stress by systematizing social and emotional
information.
Addressing Sensory Issues
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Fall sensory activities to do with your child with special needs
Learn about sensory activities with the leaves including raking leaves,
jumping in the pile, playing hide and seek, and making a leaf race.
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Chores and Heavy Work Activities for Kids as a Solution to Aggression
Developed by Pediatric Occupational Therapists
Family and Teaching Activities for
Children with FASD
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Activities When Kids Need a Break
When your child needs a break from school work or long activities,
tips on how to keep them energized and focused!
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Emotions and Animals Dice Game
Great game to teach young children about emotions through a
creative charade-like dice game.
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10 Restaurant Waiting Games for Kids
Avoid melt downs, whining, and crying with these very easy games
you can make and play while waiting at restaurants!
Apps for Smartphone, Tablet and
Computer
Search for these apps in your mobile app store.
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Dexteria ($4.99)
Therapeutic hand exercises (not games) to improve fine motor skills. Activities take full
advantage of the multi-touch interface to help build strength, control, and dexterity.
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Agnitus – Games for Learning (FREE)
This app offers a variety of interactive games, some of which focus on identifying and
matching shapes, colors, letters, and managing self-help skills. Your kids will love playing
“Icky Bathtime Fun,” a game that teaches hygiene lessons such as showering and tooth
brushing. Many of the games feature either Olly or Icky, cute mischievous characters,
and the app tracks your child’s performance level. A “report card” provides detailed
reports on study time and completed skills, which is udeful to determine strength and
weaknesses.
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Emotions and Feelings ($2.99)
Kids with learning disabilities have difficulty recognizing emotions and facial expressions;
this app, created by TouchAutism.com, uses social stories and simple illustrations to show
what different feelings look like. The app also explains why people may feel a certain
way. It’s excellent for use in special education classrooms and could be beneficial during
speech therapy sessions.
Craft Ideas for All Ages
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50 Art Projects for 3-5 Year Olds
From shadow boxes to spin art, find the perfect craft to do with your
child.
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Crafts and Ideas!
This is a collaborative board for ideas in teaching students with
disabilities in the secondary grades (middle/high/adult).
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Fun Activities for Children
Here are some tips and fun things to do with your child if they have a
disability or additional needs.
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List of 10 fun and simple Halloween crafts for preschoolers and
children with disabilities
Some fun crafts for kids that help with fine motor skills, colors, sensory,
and more!
Materials for High School Students
and Transitioning Youth to Adulthood
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Bridging to Adulthood: A Protocol for Transitioning Students with
Exceptional Needs from School to Community
The document is intended for transition planning partners, including
Manitoba Family Services and Housing, designated agencies, Child
and Family Services Authorities and Agencies, Manitoba Health and
Healthy Living, regional health authorities and their programs and
services, Manitoba Education and educators in Manitoba.
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Transition and Your Adolescent with Learning Disabilities
Moving from High School to Postsecondary Education, Training, and
Employment By: Sharon Townsend
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A Parent’s Perspective—Tools for the High School Student with LD
In this audio podcast, Salle, the mother of a high school student with
Aphasia, discusses the LEAD (Learning and Education about
Disabilities) program at her daughter Hillary’s school.
Resources for Adults
The NOFAS website has resources for adults living with FASD.
NOFAS has compiled a list of resources and information to help
families and caregivers better manage FASD in adulthood.
Topics:
• Criminal Justice
• Employment
• Money
• Diagnosis in Adulthood
• Health
• Housing
• Socializing
• Art and Music
• Understanding FASD in Adults
• Handbook of Strategies for Young Adults with FASD
Resources for Adults
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Self Advocates with FASD in Action (SAFA)
SAFA began in March of 2011 and was the first national selfadvocacy group created by and for people with FASD.
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NOFAS Webpage on Housing for Adults with FASD
Finding housing which is appropriate for the needs of someone with
FASD may be difficult. Some adults may be able to live outside of a
group home. It is important for the caregivers to continue to assist
their child in daily activities. An adult with FASD may struggle to
remember to pay rent or utility bills, so the caregivers must stay
involved.
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Supporting Success for Adults Living with FASD
This booklet offers an introduction to FASD and suggested
accommodations to assist in supporting these citizens. It can be used
as a tool as you develop your own knowledge and ways to support
success.
Resources for Adults
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FASD Relationships: What I have learned about FASD so far
This eBook is about how caring adults, siblings and professionals can
help people with FASD transcend their disabilities.
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FASD Relationships: What I Have learned About FASD
This resource by Rod Densmore offer a way to understand body and
brain differences caused by prenatal alcohol exposure. Information
on a variety of topics presented into user- friendly language.
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So You Have Been Diagnosed with FASD Now What? A handbook of
hopeful strategies for youth and young adults:
The goal of this handbook is to help young people, like you, learn
more about Fetal Alcohol Spectrum Disorder (FASD). It also offers
strategies that you can use to better understand yourself, improve
your relationships, manage your feelings, do better in school and live
a healthy life.
Resources from NOFAS Partners
NOFAS works with many partner organizations, which have resources for FASD.
Government Agencies :
• Centers for Disease Control and Prevention (CDC)
• National Institute on Alcohol Abuse and Alcoholism (NIAAA)
• SAMHSA FASD Center for Excellence
Non-Profit Organizations:
• Collaborative Initiative on FASD (CIFASD)
• National Association of FASD State Coordinators
• American Academy of Pediatrics (AAP)
• American College of Obstetricians and Gynecologists (ACOG)
• March of Dimes
• National Council on Alcoholism and Drug Dependence (NCADD)
• Organization of Teratology Information Specialists (OTIS)
• The Association of Women’s Health, Obstetric and Neonatal Nurses (AWHONN)
• Fetal Alcohol and Drug Unit: FASD and the Law
• Community Anti-Drug Coalitions of America (CADCA)
• National Association of State Alcohol and Substance Abuse Directors (NASADAD)
• Research Society on Alcoholism (RSA)
• The Association for Addiction Professionals (NAADAC)
Resources from CDC
FASD resources from the Centers for Disease Control and Prevention (CDC)
Competency-Based Curriculum
Development Guide
Fetal Alcohol Spectrum Disorders:
Competency-Based Curriculum
Development Guide
• Biological Effects of Alcohol on
the Fetus
• Screening, Diagnosis, and
Assessment for Treatment
Planning
• Treatment Across the Life Span
for Persons with an FASD
Resources from SAMHSA
FASD resources from the SAMHSA FASD Center for Excellence
TIP 58: Addressing FASD
TIP 58: Addressing FASD
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Addressing FASD in Treatment
Clinical Vignettes
FASD in Behavioral Health
FASD Prevention and
Intervention
NOFAS Prevention Resources
• The Circle of Hope
• FASD Awareness Month
• Stamp Out Stigma Campaign
• K-12 Curriculum
• International Campaign – “Too Young to Drink”
NOFAS Circle of Hope
Birth Mothers Network
www.nofas.org/coh
Mitchell@nofas.org
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Peer mentoring Support
Speakers Bureau
Newsletter
Private Facebook site
for birthmoms
Mission
The mission of the Circle of Hope is to increase understanding and support and strengthen
recovery for women who drank during their pregnancy (s), and their families.
Goals
• Improve and strengthen the lives of birth families
• Provide peer support for birth families
• Decrease the stigma, blame and shame that birth families may experience
K-12 Curriculum
The NOFAS Kindergarten through 12th Grade (K-12) FASD
Education and Prevention Curriculum is an innovative, first-of-itskind program that has been proven successful in classrooms
across the United States.
The curriculum is both educational and fun and consists of the
following four modules:
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Kindergarten through Second Grade
Third through Fifth Grade
Sixth through Eighth Grade
Ninth through Twelfth Grade
FASD Awareness Month
NOFAS FASD Month has
a webpage
NOFAS and its partners
and fellow advocates
from across the FASD
community are thrilled to
announce that the first
ever Fetal Alcohol
Spectrum Disorders
(FASD) Awareness Month
is September 2015!
Stamp Out Stigma Campaign
Join the campaign!
www.nofas.org/stigma
Join NOFAS and the
NOFAS Circle of Hope
to stop the stigma of
birth mothers of
children with FASD and
the stigma of all
individuals and families
living with the disorders.
6 VISUALS – 9 LANGUAGES
THE NETWORK
27 countries coordinated by Diane Black, chair of EUFASD Alliance
Questions?
Contact NOFAS at www.nofas.org