A Letter For Our Provincial Ministers

Dear Ministers:

I understand what a tough job your Ministries have trying to balance priorities – however I wonder can you tell me why Autism continues to be favoured over all other developmental disabilities?

Do not all people with a developmental disability deserve fairness and equality and to live their best lives?
I have had a tough job for the last twelve years raising my adopted daughter. She was removed from her parents when she was four, in foster care for four years and adopted by me at 8 years of age. She also has Fetal Alcohol Spectrum Disorder – like 537,938 other people across this province.

We have struggled for 12 years to find FASD informed professionals and services. Like Autism, outcomes are greater with early interventions. But there are next to no interventions for FASD. Many don’t even qualify for special services because FASD itself is not recognized as a disability – yet this is organic brain damage… the brain was damaged before they were born. Many drop out of school because they do not qualify for support – yet it has been proven most require a support person to keep them safe, on track and on task. To perform tasks most of us take for granted.

Like many of the parents you spoke of yesterday Minister McLeod,  I had to leave a well-paying job because of the complex needs of my daughter. It is not only parents of children with Autism that struggle. The school would not accommodate my daughter and there were no services to help us. Just like many parents of children with FASD have had to quit jobs.

My daughter has tried to commit suicide because no one understands her and we can’t find help. However I’ve had to go back to work because she is over 18 and I’m not viewed as her caregiver any longer – yet many with FASD are developmentally half their chronological age – putting my daughter in some of her skill sets at a 10 year old stage. She still needs me – but there are no programs to support us so she stays with my 73 year old mother. What happens if something happens to my mother? Many of the caregivers for these children are grandparents. We all worry about what will happen to our children.

However unlike Autism, FASD comes with enormous stigma and shame because it involves alcohol. Because of that many birth moms will not speak out. Many parents and caregivers are not able to advocate because the majority of these children come from foster and adopted homes so there are privacy issues. So FASD continues to be ignored, putting lives at risk. And costing taxpayers for reactive services.

I will not go into details about all the primary characteristics of FASD and adverse outcomes if they are not supported but I would be happy to meet with you to discuss this. However:

Stade et al published a Canadian study on health and quality of life outcomes of children with FASD. This study provided direct evidence for the devastating impact on child outcomes. A questionnaire measuring health-related quality of life was completed by children with FASD (eight to 21 years of age) and their parents. These children displayed significantly poorer health-related quality of life scores compared with the norm sample, and these impairments were most notable on cognitive and emotional variables. When compared with other published data using the same questionnaire, children with FASD had lower mean health-related quality of life scores than children with significant disabilities (ie, blindness, cerebral palsy, deafness and cognitive impairment) and those who were survivors of childhood cancers.

Did you know:
  • Fetal Alcohol Spectrum Disorder is recognized as one of the leading known causes of developmental disability in the western world.
  • Compared with other common disabilities, at an estimated prevalence of 4%, FASD is: 2.5x more common than Autism (1.52%), 19x more common than Cerebral Palsy (0.21%), 28x more common than Down’s Syndrome (0.14%) and 40x more common than Tourette’s Syndrome (0.10%). [The Prevalence of Fetal Alcohol Spectrum Disorder (July 2018) Canada FASD Research Network].
  • Using a 4% prevalence rate (CanFASD) means there are 537,939 people (including 120,785 children) with Fetal Alcohol Spectrum Disorder in Ontario.
  • Although the types of cost vary for children versus adults, FASD carries average costs of more than $23,000 per person per year, according to the analysis by Larry Burd, PhD, and colleagues of University of North Dakota School of Medicine and Health Sciences, Grand Fork. (2018)
  • Streissguth et al identified five protective factors that resulted in lower rates of secondary disabilities which included: living in a good quality stable home environment; infrequent changes in living arrangements; not being exposed to violence; receiving services for developmental disabilities; and being diagnosed before six years of age.
  • Having less physical features, and a higher rather than lower IQ were associated with a higher rate of secondary disabilities and adverse outcomes. (Streissguth)
  • In addition to school disruptions, 90% of these children will have a mental health illness in their lifetime, many may be homeless, many enter the justice system. The cost of FASD in Canada is $9.8 billion (Thanah & Jonsson 2015)

What I want to know is:
  1. Why does the Province not have an Alcohol Strategy? (Addressing not only FASD but the addiction and social issues caused by alcohol)
  2. Why is FASD, as the leading developmental disability, ignored?
  3. Why do you accept $2.12 billion from the LCBO yet direct none of that to FASD?
  4. Would it not be more cost effective to put money into proactive measures rather than reactive measures?
  5. Why are none of the suggestions from the FASD Roundtable Report prepared in 2015 with consultations from across the FASD community being implemented?
  6. When will more FASD Key Workers be introduced? With likely over 100,000 children with FASD, the 50 workers see 2,500. Is it not a crisis the other 98,000+ are without service?
  7. When will more diagnostic clinics be opened so that children can be seen earlier, and interventions put in place to prevent secondary or adverse outcomes?
  8. Why will this government not provide a financial means (like a basic income) for parents to be able to stay home to manage and care for their children – until they are developmentally ready for interdependence – it is more cost effective than disrupting lives and children being put into treatment centres or later jails.
  9. When will FASD be classed as a developmental disability (IQ has nothing to do with Executive Functioning – many of our children may never be independent). They require access to the lifetime Disability Tax Credit (their brain damage will never fix itself). Some may be able to work but many will need a support person beside them to guide them – but without recognition of the disability they do not qualify for services.
  10. When will the Health Ministry listen to the researchers and scientists and make public statements that no amount of alcohol is safe during a pregnancy. Many doctors still tell women it is okay to drink. But there are no scientific studies showing a safe level of alcohol.

FASD was first brought to the public over 50 years ago. Two Canadians (Ontarians) started an international FASD Awareness Day 20 years ago. Canada is one of the leading nations for FASD research. Ontario has produced some reports recognized globally. But the government continues to ignore the harm alcohol contributes to Society.

Why not create Neurodevelopmental Centres of Excellence that would serve all people with Developmental Disabilities. A person with FASD, or Down’s Syndrome or other developmental disability is just as important as a person with Autism.

There are many more powerful stories in the FASD world that are silenced because of stigma and shame.

There are many more stories across the developmental disabilities sector that need to be heard beside autism.

There is more than one developmental disability.

When will all developmental disabilities be recognized?

There may be varying degrees of support required, but each person deserves support to live their best life.

4 thoughts on “A Letter For Our Provincial Ministers

  1. Rambling Rose says:

    Seems quite a monumental task to raise awareness on FASD. Admittedly I was unaware of what it was till I saw it spelled out in your writing. It is not even named in this part of the world – Sri Lanka – perhaps because drinking amongst women is not common here.
    Wishing you success in your endeavours to put FASD up front on the health agenda. Blessings

    • our sacred breath says:

      Thank you for taking the time to comment. It is a bit daunting to raise awareness when our culture is very much tied to drinking alcohol … people feel protective of their right to drink and get angry if anyone suggests anything negative about it yet they show no compassion for anyone affected by it. The women in Sri Lanka are making wise choices! 🙏🏻

  2. Sabrina Roy says:

    Well written, and this is exactly what these families deal with each day. I am one of those 50 FASD support workers in Ontario. So much more can be done. Let’s end stigma around FASD and help our families.