Over half a million with FASD in Ontario wait for services and direct financial supports as the government continues to deny diagnostic services and supports for 4% of the population
(ONTARIO) – The families and 537,939 people with Fetal Alcohol Spectrum Disorder, many not on waitlists because there are few programs and services (including an unknown number waiting for diagnostic services), are waiting for the provincial government to recognize the crisis that is in its midst but continues to ignore, costing $9.8 billion dollars across Canada. (Thanah & Jonsson 2015)
Today, Ontario’s “Government for the People” failed to announce a widespread reform of programs for all development disabilities, including FASD. The system remains designed to be unfair and punishing, and does not provide equality.
Today, over half a million people with FASD continue to be stranded due to the cynicism and incompetence of the current government. Parents have told Lisa MacLeod, Minister of Children, Community and Social Services, and their local MPPs they feel abandoned. Yet, clearly, they (government officials) in good conscience, continue treating these parents, caregivers and people with FASD like lower-class citizens. This government has yet to introduce reforms to provide people with FASD and other developmental disabilities with the fairness and equality they deserve.
Under the government’s current system, families with children with FASD:
- receive little support in the educational system, as FASD is not recognized as an exceptionality (and they refused to reintroduce a private member’s bill last year that would do this);
- pay out of pocket to access private clinics, because waitlists are too long for the few funded diagnostic clinics;
- are forced to quit jobs to look after their children because there are so few trained clinicians and professionals to provide service to this population.
Clearly, the Minister is ignoring the voices of families across the province about their personal struggles, that the system is broken and their (families) lack of confidence in how services are currently being delivered. Clearly, this government is not committed to helping families receive crucial supports and services faster and improving outcomes for children and youth with fetal alcohol spectrum disorder.
- 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)
- The Provincial Government introduced Buck A Beer, opened up the sale of alcohol in more establishments with longer hours of operation and received a $2.12 billion dividend from LCBO last year, yet does not have an Alcohol Strategy to address the harms caused by alcohol.
- The provincial government undertook a province-wide consultation for FASD. The Ministry of Children & Youth Services FASD Roundtable Report (2015) summarized 5 themes which are clearly still being ignored:
- Awareness and Prevention
- Assessment and Diagnosis
- Programs, Services and Supports for Individuals and Caregivers
- Training for Front-Line Staff and Professionals
- Evidence-Based Service Delivery Models
In 2017, the government announced:
So far FASD Key Workers have been hired. However they serve 2,500 children up to age 18 (or 21 if in school). What about the other 118,285? One-time Funding was provided in the Fall of 2018 to about 40 groups across the Province. What about the one stop Access? Indigenous services? Consultation group? Research fund? Public awareness? What about the 5 themes from the Roundtable Report?
Interviews with parents/caregivers of children with FASD identify that they perceive their needs as: social support; material support; structured home environment; organization skills; understanding from others; collaboration with school, health care and social services; child management skills and recognition that each child is unique. As indicated by Minister McLeod, if you’ve met one child with FASD, you’ve met one child with FASD.
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.
Families are struggling to get their children diagnosed and find the right supports for FASD. Parents and caregivers of children and adults who require supports now and in the future no longer have confidence that their government or any program will be there to support them.
Ontario FASD One Stop FASD Website: yet to be launched
Dedicated FASD Service Ontario: There is no such program or section of the Ministry.
The above is a (truthful for FASD) “parody” of the Press Release Ontario Takes Decisive Action to Help More Families with Autism issued by the Provincial Government today. It is not meant to make light of support needed for Autism but to illustrate that support is also needed for other developmental disabilities. You can watch the Minister’s emotional announcement on YouTube and make a comment.
A response to the Minister from a mom today:
I am writing to you today with a very heavy heart and almost feeling sickened today after listening to the emotional media release of the government commitment and increase to funding Autism supports.
I would LOVE the opportunity to speak with any of you about FASD (Fetal Alcohol Spectrum Disorder) and the lack of funding from our Government. I would LOVE for you to report on this and bring awareness for families in Ontario. We have been involved in round table discussions with the government and have been waiting for 5 years for action.
I woke up feeling even more disheartened and frustrated today when your story came across my email! Please reply and let me know what I can do to help you bring FASD to the top of the list of priorities for this government.
Trying to be patient….it is very hard! Been waiting for funding and announcements like this for FASD for almost 5 years now. Please Please push for us and get our voices heard. As a parent of a child with FASD (Fetal Alcohol Spectrum Disorder) I am saddened by the news today about the government increasing funding for Autism supports and diagnosis. Did you know that FASD is more prevalent than Autism in this province and Canada wide and yet parents have to pay for diagnosis out of pocket and then there are ZERO supports for help! ZERO! Autism is not the only diagnosis but yet the government keeps acting like it is. There was an FASD Strategy that was in place and the only thing we have are workers spread out through Ontario that offer basic FASD 101 to families and only 6 visits for support. The waitlists are HUGE to even get one of those workers. But that doesn’t include diagnosis or interventions to support families in their day to day life.
As parents with children with FASD we are also stuck in a space that we do not have the same freedom to picket and be “out there” rallying as we are either Adoptive parents (who for safety reasons) cannot be in the public eye, OR Birth Parents who don’t want to face the stigma that is rampid in our society around FASD. We have had enough of reading about More and More money being given out to Autism when there are ZERO FASD diagnostics available in this province.
Just as an FYI to pass along and read with all your colleagues. Fetal alcohol disorder more prevalent than previously thought: study
I have heard from so many parents in our FASD support group that trying to get the proper support in school is not possible. There is not enough of an understanding of FASD and how it impacts these children from day to day. There are very specific strategies that could be used to help them but teachers and principals are not aware and/or are not able to provide the time and resources needed for these children.
But now is the time to invest in them. Now is the time to put money into early diagnosis, making sure they are in homes that are trained to help them be successful, in school programs that understand and support the primary disabilities of FASD, in communities that will support them 100% just like any other child who has a disability. By having these things in place, Secondary disabilities like Frustration, Acting out, Irritability, Tantrums, Mental Health Disorders, Homelessness, Alcohol and Drug Addictions, disrupted School Experience, Trouble with the Law, Incarceration. Inappropriate Sexual Behaviour, Problems with Employment, Dependent Living can be prevented.
These children as well as adults, really do have a serious disability that needs to be acknowledged. There are many children in foster care, adoptive homes and adults living in our communities who are either misdiagnosed or diagnosed and not being given the proper supports to help them live a successful life. It’s time for agencies and Government to take a hard look at what we can change to help this invisible group of people in our communities live supported and successful lives.
My big question is why is Autism getting all the help and FASD is getting zero. As a PARENT of a child with FASD in Ontario and as a PARENT (who for the past 6 years) has attended EVERY possible FASD awareness meeting, round table with the government Ministry, community gathering for FASD with “officials” who are wanting to make a change in Ontario. There have been times I have walked away feeling hopeful, excited at change that may happen, only to be disappointed that families living on the front lines are seeing very little support from “officials” working in the field of FASD. I know there is a lot of behind the scenes government advocating, writing letters, attending meetings and for that of course we are grateful. BUT how is that impacting families? We are still faced with ZERO community-based resources from local agencies, zero diagnostic hubs that are funded (families are having to pay upwards of $6000 out of pocket for a diagnosis), families are still being turned away from agencies because they don’t “deal with FASD”, schools are not understanding FASD and families are struggling…. struggling hard in the trenches.
Ontario is so behind all the other provinces it is shocking. We need a reply and we need the same emotion and dedication from your Ministry that you displayed today for the Autism Community. I would LOVE to stand in front of you all and share our stories and struggles.
And if you are wondering how you can afford to do this, I will leave this here for you. The Gambling Addictions Support receives funding through the revenue from the Casinos, let’s see what the LCBO revenue could do to help support FASD Diagnostics and supports for families in Ontario. The children are innocent victims of their product!
This was another mother’s reaction to the news:
I just watched your announcement regarding autism funding.
I’m very happy for all of the children I know with autism who will benefit from this program but I’m also greatly saddened and angry for all of the children I know, like my daughter, who stop receiving funded therapy services at school age, when they’re discharged from their local Children’s Treatment Centre to an in-school therapy model which is nothing short of laughable. Consultation, adults sitting around a table talking about my daughter and her equipment needs, is not therapy. Every spare dollar my family has from age 5/6 has gone towards paying for private Physical Therapy, Occupational Therapy and Speech-Language Therapy for Katherine.
As per the Canadian Human Rights Commission, “discrimination is an action or decision that treats a person or group badly for reasons such as race, age or disability.” Further, the Human Rights Code guarantees Ontarians equal rights and opportunities without discrimination, in areas such as jobs, housing and services. Our government’s decision, separating disabled children into groups, based on a diagnosis, creating “the haves and have nots” based on a label, is doing exactly that; discriminating against disabled children that require equal, if not more, therapy service but have the wrong label.
No disabled child should be more important than another because of a diagnosis, a label. This recent action is saying children without an autism diagnosis, who also require regular, ongoing therapy services, matter less. Is that not treating children like my daughter badly; thus discriminating against them? How can our government, how can you, justify separating need, and funding therapy, based on a diagnosis??? I would appreciate an answer to that question.
If you are in a Ontario you need to write to Minister McLeod and your local MPP. That’s what I’m about to do.
If you need help putting together a letter, check out FASworld’s Advocacy Kit .
We need to start making noise for FASD, but also start working together for all developmental disabilities.