What do we need to address FASD

Day 85 of 99 Days to FASDay

FASD A Call to Action was the culmination of two years of intensive work by members of the Fetal Alcohol Spectrum Disorder Ontario Network of Expertise (FASD ONE) and numerous discussions among a wide variety of people over the course of several years. This document provides background information about FASD, the reasons Ontario needs a provincial strategy and recommendations.

The Report provided an opportunity for our provincial government to take the lead in implementing an action plan that prevents FASD, while ensuring effective services for those with FASD, resulting in reduced incidence, improved outcomes, and decreased costs.

I wanted to share FASD ONE’s recommendations, as they can serve as a blueprint for other groups and governments. The recommendations were:

1. Awareness and Prevention

Ontarians will receive accurate information regarding the risks of alcohol use during pregnancy together with timely access to the services they require to abstain from or limit alcohol use in pregnancy.

1.1 Ensure that all Ontarians receive ongoing evidence-informed knowledge about the effects of alcohol use during pregnancy using broad-based, community driven, linguistically and culturally appropriate communication channels, resources and materials.

1.2 Ensure that all pregnant women and women of childbearing age have the opportunity to discuss their alcohol use, the risk of alcohol exposed pregnancy, and pregnancy planning, in a safe environment with well-informed practitioners.

1.3 Ensure that pregnant women who are using alcohol or are at higher risk of alcohol use in pregnancy have priority access to holistic, culturally appropriate, women-centred services that reflect the social determinants of health—addiction treatment, mental health services, health care, prenatal care, safe housing, income stability, food security.

1.4 Ensure that new mothers receive postpartum support to assist them to maintain healthy changes made during pregnancy, to prevent future alcohol exposed pregnancies, to support the development of their children and to prevent secondary disabilities related to prenatal alcohol exposure.

2. Assessment and Diagnosis

Individuals with prenatal alcohol exposure, regardless of their age, will have access to timely assessment and diagnostic services and a coordinated informed response that is appropriate, effective, and linguistically and culturally sensitive.

2.1 Build capacity to assess for and diagnose FASD as part of the assessment of neurodevelopmental disabilities.

2.2 Ensure access to equitable and timely assessment that considers all brain domains affected by prenatal alcohol exposure; ensure diagnosis at the earliest age possible, following up across the lifespan when needed.

2.3 Encourage the integration of FASD identification, assessment and diagnosis into all support services for children, youth and adults.

2.4 Provide a discrete FASD OHIP code so that the prevalence of FASD diagnoses in Ontario can be tracked.

2.5 Provide comprehensive case management support to facilitate referrals.

2.6 Develop a protocol to ensure the transfer of a child’s medical history from the prenatal to the postnatal period to facilitate assessment, diagnosis and referral.

3. Intervention and Support

Children, youth, adults and their caregivers will have ready access to culturally sensitive resources and services designed to address and accommodate their individual lifelong needs. Elements of effective practice inform service provision across a range of sectors—child welfare, education, justice, housing, income security, employment, health, mental health, and addictions—in ways that stabilize lives and maximize potential.

3.1 Define service pathways to ensure those affected by FASD have access to the services they need across multiple sectors.

3.2 Expand service interventions to include effective practices so that individuals living with FASD have access to the services that contribute to optimal outcomes.

3.3 Integrate the expansion of collaborative family-centred service coordination to include respite, case management, education, parenting support, supportive housing and employment, and income security.

3.4 Facilitate the addition of Fetal Alcohol Spectrum Disorder (FASD) as a neurodevelopmental exceptionality in the special education system of Ontario and provide effective programming to support students with this brain-based disorder.

3.5 Support cross-sector, lifelong FASD services that are seamless, personalized and feature ongoing and transitional support.

3.6 Ensure that all families have access to timely, affordable, tailored, strengths-based supports and resources.

3.7 Ensure access to FASD-informed custodial and non-custodial programs and services for victims, accused and offenders with this brain-based developmental disability.

3.8 Establish protocols to ensure the protection of the rights of witness, the accused, offenders and victims with FASD in the legal system.

4. Knowledge Transfer and Capacity Enhancement

FASD education and training will be made readily available to both current and future families/caregivers and service providers in all service sectors.

4.1 Facilitate awareness of and access to FASD education and training for families and caregivers, as well as those in all sectors serving individuals affected by FASD and their families.

4.2 Ensure the inclusion of FASD-specific content in the curriculum of College and University programs including medicine, nursing, midwifery, early childhood education, education, child and youth, occupational therapy, speech and language pathology, physiotherapy, social work, psychology, police, corrections and law.

4.3 Knowledge transfer should include cross-sector collaboration to explore potential opportunities in programming and coordinate and align policies to enhance effectiveness of service delivery and mitigate adverse outcomes.

4.4 Facilitate knowledge transfer and communication among Ontario’s local community FASD networks.

5. Research and Evaluation

Services and resources will be evidence-based, effective, culturally appropriate, and inclusive of the voice of those affected by FASD.

5.1 Encourage the expansion and support of systemic evaluation processes to measure the effectiveness of FASD services and programs in Ontario.

5.2 Encourage the expansion and support of a systematic data collection process to measure prevalence of FASD in Ontario.

Unfortunately the government in power when this report was released did not incorporate much of the recommendations. You can read about what was undertaken in the following posts:

Ontario 2017 Budget Provides $26 Million for FASD 

One Response to Provincial FASD Strategy

In 2018, the Ontario Provincial government changed, and our new Premier decided to launch a Buck A Beer challenge – which actually failed miserably. In 2019, he fast tracked legislation to put alcohol in corner stores. To promote it, MPPs were posting selfies looking for alcohol in corner stores.

While there are pockets of groups doing advocacy work, there is not a large scale coordinated advocacy movement in Ontario. I read a great quote on the Living with FASD Facebook page, on why that might be:

I was told by a social worker who facilitated the first parent support group we attended that if it took a group of 100 parents of kids with autism for 10 to show up at monthly meetings, it would take a group of 200 parents of kids with FASD for 10 to show up at monthly meetings. Parenting kids with FASD can be much more capricious than autism.

I know when the maiden was younger I barely had the energy to do much more than raise her – because not only was it exhausting to be a parent to child with FASD day to day, there was all the extra that goes with it: school meetings, therapies, doctors appointments, specialists and most of that involved advocacy on a personal level. Who had time on a larger level.

Here is a resource I found with suggestions on Advocacy Advocacy: Successes and Struggles From the FASD Network of Saskatchewan (Canada).

There are other factors which also hamper advocacy and awareness. I shared an opinion piece published in Forensic Scholars Today which explored this topic FASD Prevention: Why are we still struggling?

In 2019, a Provincial Advocacy Group, the Ontario FASD Action Network was formed to unite advocacy efforts across the Province. So far, we have connected with the LCBO to increase compliance with Sandy’s Law signage and had a meeting with the Minister of Children,Community and Social Services, to talk about FASD. I will post more information on that meeting in the next couple weeks.

And while it is too early to tell if anything will happen, and until we get to a place where FASD is recognized, we have International FASDay on September 9 to unite us in sending our messages about FASD around the globe.

And although not everyone agrees, wearing red shoes, as part of the Red Shoes Rock Awareness Movement, unites us and makes us visible.

No, we are not at a place where Fetal Alcohol Spectrum Disorder is being addressed appropriately but many communities are making progress. However to make big change we need more lobby groups, advocacy groups and legislative or policy makers on board. Yes, it’s been 45 years since FASD was named, but change takes time. And FASD has so many aspects to it, that unfortunately this change will take more time. We need a tipping point –  the critical point in a situation, process, or system beyond which a significant and often unstoppable effect or change takes place.

Here is another great resource, which captures 10 years of the province of British Columbia’s strategy. This would be an excellent blueprint to use since BC introduced its FASD strategy in 2003, and has a history. Fetal Alcohol Spectrum Disorder: Building on Strengths 2008-2018 a provincial plan for British Columbia.

What about where here you live? Do you have a local or national strategy? Share it in the comments below.

For our next day in our journey: Day 86 of 99 Days to FASDay: FASD Messages

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