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:

• 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:

• Disability rights groups

• Special education advocacy

• General housing assistance

• General employment assistance

Sharing Personal Stories

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

Get to Know Me: Interview Series

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:

• 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 FASD-

related 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:

• 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

• 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.

• 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.

• 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

• 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.

• 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.

• Math is Fun

Interactive math site for teaching essential math skills.

Improving Attention

• Attention building games for kids with special needs

Use these cognitive exercises to help your child build concentration

and improve their symptoms.

• 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

• 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).

• 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.

• 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

• 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.

• 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.

• 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

• 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.

• Strategies to Help Kids Calm Down

http://www.encourageplay.com/blog/10-strategies-to-help-kids-

calm-down

• 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

• 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.

• 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

• 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!

• Emotions and Animals Dice Game

Great game to teach young children about emotions through a

creative charade-like dice game.

• 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.

• 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.

• 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.

• 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

• 50 Art Projects for 3-5 Year Olds From shadow boxes to spin art, find the perfect craft to do with your child.

• Crafts and Ideas! This is a collaborative board for ideas in teaching students with disabilities in the secondary grades (middle/high/adult).

• Fun Activities for Children Here are some tips and fun things to do with your child if they have a disability or additional needs.

• 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 • 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.

• Transition and Your Adolescent with Learning Disabilities

Moving from High School to Postsecondary Education, Training, and

Employment By: Sharon Townsend

• 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

• Self Advocates with FASD in Action (SAFA)

SAFA began in March of 2011 and was the first national self-

advocacy group created by and for people with FASD.

• 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.

• 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

• 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.

• 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.

• 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

• 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

• 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-its-kind 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:

• 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