B.C. Representative for Children and Youth Jennifer Charlesworth. (Black Press files)

B.C. Representative for Children and Youth Jennifer Charlesworth. (Black Press files)

Fetal alcohol spectrum disorder gets ‘meagre’ support compared to other conditions: B.C. report

Children should be assessed on their needs, not their diagnoses

Children and teens with fetal alcohol spectrum disorder need to be included in the Ministry of Children and Family Development program that helps support youth with special needs, according to a report released Thursday (April 15) by by the Representative for Children and Youth.

Representative Jennifer Charlesworth said that fetal alcohol spectrum disorder (FASD) “is a long life disability that is often misunderstood,” and often comes with stigma attached.

Charlesworth said that in the making of the report, her office worked to avoid “false framing that it’s an Indigenous problem and that it’s 100 per cent preventable.”

The disorder is neither linked to any specific demographics “nor is it necessarily the result of a women intentionally consuming alcohol while she is pregnant.” The report pointed to both trauma and consuming alcohol before a pregnancy is known as potential reasons why children may end up with FASD.

The office said that youth with FASD must gain access to the Ministry of Children and Family Development’s Family Support Services for Children and Youth with Special Needs.

Charlesworth said her office heard from multiple families that their children with FASD were unable to qualify for the same support as children with similar needs.

“Families with FASD often struggle to get any tangible help,” she said.

Children and families with FASD, Charlesworth said, should be assessed for support based on their functional needs and not on their diagnosis.

Myles Himmelreich, co-lead researcher of the report, said that four per cent of Canadians may have the disorder. Himmelreich has FASD and 15 years of experience working in the field.

“When we’re focusing on how to make FASD go away or stop… we’re not focusing on the needs of people with FASD,” he said. Himmelreich said that discrimination against people with FASD shows in their struggle to get a diagnosis, society’s judgement about their potential and stigma towards mothers.

“The lack of correct information is what’s lead to years of pain,” he said.

Himmelreich said that he was removed from his mother’s care five times before the age of three, instead of the authorities empowering woman to care for their babies

“How was I ever to connect or have a sense of belonging?” Himmelreich asked. His mother, he added, drank during her pregnancy but noted that the shame she was made to feel helped neither her nor her child.

Mitzi Dean, Minister of Children and Family Development, said the province was “committed to changing” the stigma that surrounds FASD.

The report made a total of 11 recommendations:

  • Youth with FASD must gain access to the Ministry of Children and Family Development’s Family Support Services for Children and Youth with Special Needs.
  • MCFD to secure immediate funding enhancements and begin implementation of the expanded eligibility criteria by Sept. 30, 2021.
  • MCFD to take immediate action to ensure equitability and accessibility of the Key Worker Parent Support Program by Sept. 30, 2021 and complete the best practice review by March 30, 2022.
  • Conduct a evidence-based, culturally attuned review of existing FASD awareness training and the training needs of all front-line staff working with children and youth with FASD.
  • Review, and develop and implement a plan, to provide effective and accessible mental health services for children and youth with special needs, including FASD.
  • Reduce wait times for complex developmental behavioural conditions (CDBC) diagnostic clinics; nine months by March 31, 2022; to six months by March 31, 2023; to three months by March 31, 2024.
  • Apply learnings from the review of systemic bias to referral pathways and assessment processes for CDBC diagnostic clinics.
  • Conduct an assessment of existing FASD awareness training and the training needs of appropriate front-line staff working with children and youth with FASD.
  • Cross-ministry plan to collect high-quality demographic and service data that allows for disaggregation, providing an essential foundation for more effective policy development.
  • Ministry of Education update its Inclusive Education Policy and supporting documents and incorporate information to increase awareness and understanding of the specific learning needs of children and youth with FASD.
  • Ministry of Education work with the British Columbia Council for Administrators for Inclusive Supports in Education (BC CAISE) to support staff training and development needs for educators and school staff who work with children and youth with FASD or suspected FASD.

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katya.slepian@bpdigital.ca

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