FASlink Fetal Alcohol Disorders Society
ODA Hearing - Hansard



Thursday 3 February 2005 Jeudi 3 février 2005



The committee met at 0905 in the Four Points by Sheraton, London.


Consideration of Bill 118, An Act respecting the development, implementation and enforcement of standards relating to accessibility with respect to goods, services, facilities, employment, accommodation, buildings and all other things specified in the Act for persons with disabilities / Projet de loi 118, Loi traitant de l'élaboration, de la mise en oeuvre et de l'application de normes concernant l'accessibilité pour les personnes handicapées en ce qui concerne les biens, les services, les installations, l'emploi, le logement, les bâtiments et toutes les autres choses qu'elle précise.

The Chair (Mr. Mario G. Racco): Good morning. All the members are around here, but they haven't reached this room yet.

(Editor's Note: A number of submissions have been deleted for brevity leaving only the joint submission by Kathy Lewis and Bruce Ritchie.)

The Chair: Both points are out of order. But I do appreciate that you want to clarify or clear the record, and that's fine. We did it. Can we move on to the next presentation, please?


The Chair: The next one will be Kathy Lewis and Bruce Ritchie, I believe. Welcome. You can start your presentation any time. Please proceed, Ms. Lewis.

Ms. Kathy Lewis: Good afternoon. You have two handouts from us. We'll be starting with this one.

The Chair: Yes. They are being given to us right now.

Ms. Lewis: My name is Kathy Lewis. I'm a member of the London accessibility advisory committee and of the Ontarians with Disabilities Act Committee. But I'm here today as an individual and as a parent to speak to you about how Bill 118 can address the very serious issue of fetal alcohol spectrum disorder. I'm just going to very quickly go through my recommendations that address the bill and then I'm going to turn it over to Bruce Ritchie, who's really the expert on FASD here. I've just highlighted my recommendations to you for the bill.

First of all, under "Interpretation" in the bill, your definitions of disabilities are kind of mixed. Some of them are specific and some are very general. We recommend that fetal alcohol spectrum disorder be named specifically under the definition of "disabilities."

The second thing I'd like to look at is under "Accessibility Standards" in part III of the bill, under "Classes." We recommend that fetal alcohol spectrum disorder be assigned a specific class designation. Under contents of standards, because of the vast and unique numbers of barriers that face individuals with fetal alcohol spectrum disorder, we contend that specific measures, policies and practices for the removal of this cross-section of barriers must be set down to remove and prevent barriers to those with FASD. Therefore, our recommendation is that specific measures, policies and practices be set down to remove and prevent barriers to those with fetal alcohol spectrum disorder.


Under "Standards Development Process," the heading "Consultation with ministries": All areas such as health care, education, income supports, youth, community and social services, housing and justice must work co-operatively to prevent fetal alcohol spectrum disorder from developing initially, as well as identifying, removing and preventing barriers to those already affected. Therefore, we recommend that all relevant ministries pledge to work co-operatively toward the goals as outlined by ourselves and the Canadian Paediatric Society.

Under subsection 8(4), "Composition of standards development committee," we recommend:

That an expert in the field of fetal alcohol spectrum disorder be invited by the minister to participate as a member of a standards development committee; and

That special consideration be given to an invitation to an additional fetal alcohol spectrum disorder expert from the aboriginal community.

I'll turn our discussion over to Bruce Ritchie.

Mr. Bruce Ritchie: Actually, I have the task of condensing 103,000 documents and letters in the FASlink archives and the issues of more than 400,000 people who use our services annually into a 10-minute presentation. I don't know if we can do that, but we're going to try.

The Chair: OK. Thank you.

Mr. Ritchie: I would like to congratulate Mr. Parsons on Sandy's Law being implemented. Thank God it's there. Your work has been fantastic. I'm delighted to see that.

An individual's place and success in society is almost entirely determined by neurological functioning. A neurologically injured child is unable to meet the expectations of parents, family, peers, school and career, and can endure a lifetime of failures. The largest cause of neurological damage in children is prenatal exposure to alcohol. These children grow up to become adults. Often the neurological damage goes undiagnosed but not unpunished.

Fetal alcohol spectrum disorders are caused when a pregnant woman consumes alcohol. It is 100% preventable. The Statistics Canada Canadian community health survey in 2000-01 found that roughly 20% -- over 19% -- of girls ages 12 to 34 consumed five or more drinks on each occasion, 12 or more times a year. In addition, another 32% of girls ages 15 to 34 consumed five or more drinks on each occasion, one to 11 times per year. Five drinks for a 100-pound girl causes a 0.25 blood-alcohol level. That's three times the legal limit; 0.30 usually gets somebody into the intensive care unit. Most girls are two to three months pregnant before they find out, and it is likely that at least 20% of the children in this province are exposed prenatally to multiple binges of alcohol. Even low levels of consumption, as low as one drink per week, have been shown to be adversely related to child behaviour. There is no known safe level of alcohol consumption during pregnancy.

If you will turn to page 3 of the presentation, I'm not going to go over that in any kind of detail, but I would like you to refer to it after, when you have a few minutes. There are 66 items there that are the results of prenatal alcohol exposure, that they can include. They vary depending on the birth mother's age, health, somewhat on genetics, nutritional standards, the amount she was drinking, what the peak blood-alcohols were at what time when what part of the baby was developing.

If you turn over to page 4, you'll find a chart showing the effects of alcohol as a teratogen on the baby. Those are the various aspects of the child that are developing throughout pregnancy. The very dark line in your copy shows where the most danger occurs to the various things such as the brain, etc. Really, the brain is developing from the third week, from just after the second week right through to birth. Alcohol can affect a child even when it's being nursed, after it's been born.

The lower picture on that page, of course, is of two brains, one from a normal six-week-old baby and the other from an FAS child, who obviously passed away.

FASD is grossly under-reported. The Canadian Paediatric Society states, "Fetal alcohol syndrome is a common yet under-recognized condition resulting from maternal consumption of alcohol during pregnancy."

The only problem in this province is that Ontario medical schools do not provide FASD diagnostic training to undergraduate physicians in this province. This results in the denial of screening and diagnostic services to thousands of children with FAS-related disabilities. It's grossly under-recognized because the doctors don't know how to diagnose it and they're not being taught by medical schools -- unless they specialize in addictions, and then the diagnoses can be taught.

The girls get knocked up and the boys get locked up. They are followers, easily misled, with little or no appreciation of consequences. Without intervention, many ride the justice system merry-go-round or become homeless street people. A great many of our street people are FASD. They are required to compete in society but have been denied the tools to do so.

Of FAE individuals, 95% will have mental health problems; 60% will have disrupted school experience; 60% will experience trouble with the law; 55% will be confined in prison, a drug or alcohol treatment centre or a mental institution; 52% will exhibit inappropriate sexual behaviour; more than 50% of males and 70% of females will have alcohol and drug problems themselves; 82% will not be able to live independently; and 70% will have problems with employment.

Essentially we have 20% of our children being exposed to high levels of alcohol. When I look at the statistics for a major board of education, the Lambton-Kent District School Board, which is pretty typical, 21% of our students are identified and receiving services from the special-needs department.

The Canadian centre on children's research says that 20% of Canadian children have a serious mental health problem. This 20% number keeps on coming up magically, and it seems to correspond with the volume of alcohol that's being consumed during pregnancy.

Getting to youth in care: Today, a very large percentage of the children in CASs have been prenatally exposed to alcohol and it is a problem to try and get them adopted. We do need a system of open adoption in this province instead of closed adoptions. I have mentioned to others that some agencies have been known to threaten termination of a foster contract if the foster parents go to a non-agency doctor and obtain a diagnosis of FASD. You see, without a diagnosis, they don't have to disclose that the child has FASD. That's criminal, in my opinion.

Our children have disabilities, but their biggest handicaps are the battles we have to continue to fight to get the services they need.

I would like to see the grade 10 literacy test scrapped completely, or at least our FASD children given an exemption, because our FASD children very often have difficulty passing it. Essentially what happens then is that you are setting up a 25% failure rate and a 25% dropout rate after grade 10, fodder for the justice system, a new slave class and increased stress on the social support systems in this country. It is access denial of the worst type, denial of access to a decent future, because these kids can't even get into apprenticeship programs later on to learn to be mechanics. They may not be able to write a great essay, but they may be able to strip an engine and put it back together better than you or I can. Why would you require that they do this? It makes as much sense as asking somebody who's a quadriplegic to do the pole vault to pass high school. It's just plain stupid.

Homelessness: Poor impulse control, failure to predict consequences and inability to plan or manage money means they don't pay the rent or utilities and they get turfed out on to the street and are homeless. It leads to evictions.

It costs $120,000 a year to house a young offender and $82,000 for an adult offender. Some 60% to 80% of our prisoners are FASD and fully diagnosable.


I'm going to jump over to one little comment I make a little further on -- I'm not sure it's in your copies -- but a single adult, disabled, in Ontario gets $11,160 a year maximum. If they are living with their parents, it's cut by 24%. That's criminal. But let's really get something straight here: If they live in poverty-stricken isolation on ODSP, the government will give them between $8,500 and $11,000 a year. If they throw a brick through a store window, the government will spend $82,000 a year to jail them and provide shelter, food, clothing, recreation, education, medical services, companionship, and the certainty that they will be taken care of. Frankly, as a parent and taxpayer, I find that logic appalling, degrading and disgusting, and I hope you do too.

My final comment is that where services are lacking, omitted or not available, our children, whatever their ages, die: frozen in a snowbank, through suicide, through drug overdosing and complications, by being on the street.

That's it.

The Chair: Thank you. One minute each, please.

Mr. Parsons: It's a difficult topic. Our son died a year ago Saturday from FAS. As the brain is malformed intellectually, the blood vessels within it are malformed. He left us.

FAS individuals die young, whether it be from defects or suicide, or we lock them up. We struggle to find a cure for cancer, for heart disease, and we have the cure for FAS: Don't drink while you're pregnant. It's as simple as that.

I don't have a question. I want to applaud you. I absolutely applaud you for what you're doing. Twenty years ago, FAS wasn't known. These were "bad" kids. Now we know that we have to change, to accept the way they are and to work with them. The more publicity, the better. I just thank you. If there's anything I can ever do to help, I would be delighted.

Mr. Ritchie: Thank you so much.

The Chair: Mr. Jackson, any comments?

Mr. Jackson: Mr. Chairman, I have known Bruce for a while, and I would like to yield my minute for him to add some more for the record.

The Chair: OK. Let me allow Mr. Marchese; then he can finish --

Mr. Jackson: No, I'm giving him my minute.

The Chair: I realize that. That's fine. I thought maybe he would want to summarize after the questions, in case there is some --

Mr. Jackson: No, I'm pleased to give Bruce another minute.

Mr. Ritchie: Thank you. I appreciate that.

In the justice system, we spend $12 billion annually. The alcohol industry contributes $3.2 billion annually. Half of the justice budget is related to alcohol issues, whether it's FAS or car accidents or whatever. But it's more than half of the justice budget alone. That's $6 billion, and the alcohol industry is only contributing $3.2 billion.

Well, you know, if you want to play, you gotta pay, so maybe they should be paying the full shot and that money should be coming back to the people they are affecting, quite frankly, because none of the money is coming to the grassroots, none of the money is actually getting to the people who are dealing with this face to face on a day-to-day basis. We need your help.

Mr. Marchese: I just want to congratulate the both of you for giving us this information. I learned it while we were dealing with Ernie's bill. It's incredible how much of this behaviour we do not understand in the educational system. I learned through that committee process that doctors don't know how to identify it, generally speaking. Special-education teachers certainly don't know how to identify it, and regular teachers don't. I learned that those kids who have fetal alcohol spectrum disorder can't explain why they do what they do. So if that's the case, what do we do?

All I want to say is that this issue doesn't fall into this bill, but it could if we found a way to build it in, and I hope we find a way to do that.

Mr. Ritchie: It honestly does fall into the bill, because you can make FASD a listed disability in there, along with diabetes --

Mr. Marchese: It's the same with autism; it doesn't fit. I hope it does. But it can; I agree with you.

Mr. Ritchie: Well, then let's hope in heaven's name you will actually do it.

The Chair: We thank you very much for your presentation. We'll move on to the next one, but thanks again.

Mr. Jackson: Just a point of information. Yesterday, when this committee was in Niagara Falls, the distressing and disturbing news was brought to our attention that Justice Donald Wallace had taken a $300 minimum highway traffic fine for the abuse of a handicapped parking space and discounted it and indicated some disturbing items. I just wanted to circulate to the committee members a letter that I have written to the Honourable Michael Bryant, asking him to appeal this decision and to pursue it. In fact, it came to our attention collectively through the processes of these hearings. I wanted to publicly acknowledge, if I may, Mr. Chairman, both the deputants who brought this to our attention, John Kis and Gordon Shapley. I hope we'll get a swift response from the Attorney General that we're going to talk to judges about not discounting the rights of the disabled in this province.

The Chair: The point has been made and we'll wait for a reply. Any other comments before we adjourn the meeting? We will adjourn this meeting until Monday next week in Thunder Bay.

The committee adjourned at 1835.

Continued from overleaf

London Property Management Association SP-696
Ms. Kim Walker
Mr. Paul Cappa

Ontarians with Disabilities Act Committee, London SP-699
Mr. Andrew Tankus

Autism Society Ontario SP-701
Ms. Patricia Gallin

Ms. Kathy Lewis; Mr. Bruce Ritchie SP-703

Business and Professional Women's Clubs of Ontario SP-706
Ms. Sheila Crook
Ms. Doris Hall

Canadian Hearing Society, London SP-708
Ms. Marilyn Reid
Ms. Sandra Adams

Mr. James Hunsberger; Mr. Brad Ullner SP-710

Mr. Thomas Noble SP-711

Ms. J.J. Avery SP-712

Mr. David Murray SP-714

Ms. Lisa Klinger SP-715


Chair / Président

Mr. Mario G. Racco (Thornhill L)

Vice-Chair / Vice-Président

Mr. Khalil Ramal (London-Fanshawe L)

Mr. Ted Arnott (Waterloo-Wellington PC)

Mr. Ted Chudleigh (Halton PC)

Mr. Kim Craitor (Niagara Falls L)

Mr. Peter Fonseca (Mississauga East / Mississauga-Est L)

Mr. Jeff Leal (Peterborough L)

Mr. Rosario Marchese (Trinity-Spadina ND)

Mr. Mario G. Racco (Thornhill L)

Mr. Khalil Ramal (London-Fanshawe L)

Ms. Kathleen O. Wynne (Don Valley West / Don Valley-Ouest L)

Substitutions / Membres remplaçants

Mr. Cameron Jackson (Burlington PC)

Mr. Ernie Parsons (Prince Edward-Hastings L)

Clerk / Greffière

Ms. Anne Stokes

Staff / Personnel

Ms. Elaine Campbell, research officer,

Research and Information Services


Thursday 3 February 2005

Accessibility for Ontarians with Disabilities Act, 2005, Bill 118, Mrs Bountrogianni /
Loi de 2005 sur l'accessibilité pour les personnes handicapées de l'Ontario,

projet de loi 118, Mme Bountrogianni SP-647

Donevan SP-647

Accessibility Centre SP-649
Ms. Tracy Roetman

Ms. Catherine Linderoos SP-651

City of London SP-653
Ms. Susan Eagle
Mr. Kash Husain
Mr. Grant Hopcroft
Sault Ste. Marie Accessibility Advisory Committee SP-657
Mr. Gerard Taylor

Sault Ste. Marie and District Barrier Busters SP-658
Ms. Dorothy Macnaughton

Community Living Essex County SP-661
Ms. Dodie Wilson
Mr. Ray Jerome

Mr. John Travers Coleman SP-663

Access Guide Canada SP-666
Ms. Anne Robertson

Mr. David Dimitrie SP-667

City of Kitchener SP-670
Ms. Margaret Sanderson

Ms. Marianne Park SP-671

St. Thomas Access and Awareness Committee SP-673
Mr. Stan Taylor

Multiple Sclerosis Society of Canada, London-Middlesex chapter SP-675
Ms. Bonnie Maas

Ms. Lorin MacDonald SP-678

Community Living Essex County SP-680
Ms. Lisa Raffoul

Ms. Bonnie Quesnel; Mr. Steve Balcom SP-682

Self-Help Alliance SP-683
Mr. Paul Reeve

Community Living London SP-686
Mr. Jim Hewett
Mr. Barry Bates

Mr. Patrick Murphy SP-687

London and District Labour Council SP-690
Mr. Joe Wilson

Ms. Avril Rinn SP-692

Mr. Duncan Bruce Sinclair SP-694

Continued overleaf