Information for Caregivers

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Below are a list of links to resources for families and caregivers collected by CanFASD. Check them out!

Succession Planning — What parents & caregivers of a loved one with FASD need to know.

How to Explain an FASD Diagnosis to your Child — Tips on how to explain the diagnosis of FASD to your child in a way that they can understand, and feel empowered by their disorder.

KnowFASD.ca — KnowFASD.ca is an interactive website that provides information across the spectrum and lifespan of individuals who have FASD. It summarizes some of the common neurobehavioral features from current research and explains some of the neurobehavioral difficulties. Not all individuals with FASD will experience all of the issues presented.

Because FASD is a spectrum disorder, life can be very difficult for each person. The site has an ages and stages interactive feature, as well as a wiki environment, that provides information on many of the life challenges individuals may face in areas such as health, education, life skills, housing, social relationships, employment, and mental health. Within the wiki environment, intervention options include: tips, resources, and links specific to each area of neurobehavioral challenge.

KnowFASD.ca was developed by CanFASD in conjunction with University of Alberta and Dr. Jacqueline Pei’s research team.

The Coach Approach: Supporting Families of Children with Disabilities  — A coach or navigator approach is a new model that is now increasingly used in pediatric health care contexts. This webinar from the Canadian Association of Paediatric Health Centres will provide an overview of what a coach is and the current evidence that exists in the use of a coach for parents of children with disabilities.

FASD Caregiver/Community Advocation Resources

Experiences of living with fetal alcohol spectrum disorders: a systematic review and synthesis of qualitative data — This study aims to identify and assess available evidence from qualitative studies exploring experiences of individuals living with fetal alcohol spectrum disorders (FASD) or those living with a child with FASD, as well as experiences of interventions aimed at supporting individuals with FASD and their families.

I Am a Caregiver! — Caregiver Resource Guide — This guide was developed as a way for caregivers to access important information and resources relating to providing care for children and adults with FASD.

Four new resources for First Nations and Metis parents and caregivers in Manitoba — In celebration of National Child Day (November 20, 2017), Healthy Child Manitoba Office (HCMO), and the National Collaborating Centre for Aboriginal Health (NCCAH) officially launched four new resources for First Nations and Metis parents and caregivers in Manitoba.

FASD and Educational Supports—This document was developed by the CanFASD Family Advisory Committee as a resource for family members looking for information about Educational supports for their children. Some jurisdictions have more streamlined resources than others for children and/or adult children; this is a good starting place.

Family Support for Children with Disabilities—This document was developed by the CanFASD Family Advisory Committee as a resource for family members looking for information about financial and other supports for their children. Some jurisdictions have more streamlined resources than others for children and/or adult children; this is a good starting place.

FASD Research: Learning Together—Presentations and report from the August 2016 workshop in Regina bringing together over 60 participants to discuss four key topics: Whole Body Disorder, Aging & Transitions, Strategies & Supports, and Advocating for Supports.

Caregiver Training—An updated Caregiver Curriculum on FASD was launched in June 2016. Now available are new, interactive modules which you can view right from your browser.

The Disability Tax Credit (DTC) is a non-refundable tax credit that helps people with prolonged disabilities or their supporting persons reduce the amount of income tax they may have to pay.

DTC Frequently Asked Questions
DTC Application Guide for Physicians
DTC Letter Template for Physicians
DTC: General Information
Tips for paediatricians completing the DTC Form

The Importance of Family Engagement in FASD Research—Slideshow from the CanFASD Research and Policy Series #4

FASD Research: Learning Together—Presentations and report from the August 2016 workshop in Regina bringing together over 60 participants to discuss four key topics: Whole Body Disorder, Aging & Transitions, Strategies & Supports, and Advocating for Supports.

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