Mr. Chair, thank you for the opportunity to address the justice and human rights committee today.

My name is Elspeth Ross. I am a parent and a volunteer service and information provider for FASD. I'm talking to you today from the front end of the issue that you are dealing with. I represent the FASD group of Ottawa, which I have facilitated since 1999.

My husband and I have two sons affected by FASD, who are now in their thirties. I serve on committees locally and provincially, and provide a current awareness service by email now through the FASD-Canadian-News.

ln 1992 I was a parent invited to a national symposium on FAS/FAE in Vancouver. We parents came away all fired up and keen to take on organizing FASD, but we can't do it. Our families are often in crisis and we struggle along without help.

The federal government's FASD framework for action makes the same mistake, putting the onus on the community. We don't see leadership from the federal government or a national effort or agenda on FASD in health or justice, or collaboration with the provinces. It's exciting that there is so much research and action going on in FASD now, but we need more in Canada.

The situation is urgent because more women of chiId-bearing age are drinking alcoholic beverages and binge drinking. Damage is done early in pregnancy and 50% of pregnancies are unplanned.

My husband and I had the advantage of knowing in 1991, when our first son joined the family at 19 months, that prenatal alcohol was a factor and that we should look for help. That's unusual.

Tall, good looking, and good talkers, most people affected have average IQ. My sons both graduated from high school, and one from college, and was married. Both work in masonry with an understanding boss.

My second son was caught shoplifting and did community service. He went for a job interview at a store at noon and went back at 2:30 to shoplift from the same store. Does that make sense? The policeman said, “This young man will learn from his mistakes”. That policeman knew about FASD, yes, and tore up the summons.

The same son has got letters from collection agencies for things he does not remember, probably getting on buses without paying. We don't believe any of his stories. He lost an apartment because friends that he met on the street moved in and of course he lost it. Easy victim.

Both sons have to be reminded over and over, and may not show up for appointments. They need clear and simple instructions. Money flows, documents are lost, and forms can't be filled out. There are complications with addictions, health problems with diabetes type 2 and panic attacks. Supervision, structure, services, support, and luck have kept them out of the justice system.

People with FASD have talents and skills, and we build on these to maximize potential with the theme “Being your best with FASD”.

I'm here today to support the issue in Ryan Leef's bill, which would be a great start. We need the addition of court-required external support plans to facilitate reintegration into society. We encourage expanded use of diversion, conferencing, mental health, and community courts, and supports and services to keep people out in the first place.

FASD is a brain disorder and no two people are the same. You see them in the justice system as witnesses, victims, as well as accused, without recognizing them. Eager to please, people with FASD may waive their rights or take responsibility for crimes of others. One mother reports that her son was assaulted and subsequently appeared as a witness. One day on the stand was a gruelling process for someone easily confused. The accused got off and now the young man has no faith in the system for protection, and is marked for daring to testify.

FASD is often labelled as an attachment disorder, ADHD or autism, which are more acceptable conditions. It's complex, with all those occurring, as well as trauma, and being moved around, and mental health problems.

We need to speak out, but many family members won't speak publicly because of guilt and shame, or being blamed for poor parenting, embarrassment, or because they are afraid their children will be targeted. Getting a diagnosis must be made easier. Some won't try for it because they can't get services anyway. People with FASD are usually too high functioning to qualify for developmental services if based on IQ.

What are the protective factors? The researcher Ann Streissguth referred to the following in 1997: early identification and diagnosis, a stable home, supportive environments, and direct involvement with special services. Families need help to provide information and education, so they know it's a disability; support and understanding; help navigating the system; flexibility; patience; perseverance; and hope.

An Ontario stakeholders group in 2008 found that the biggest needs of families was for help with schools, finding respite, transition to adult services, supportive living and employment, diagnostic services, and knowledgeable professionals.

Parents have to educate professionals one at a time. Some of us are joining with families of other developmental disabilities groups, and we've been asked to work with those in the autism community for police training and a registry of people affected.

People with FASD need an “external brain” or scaffolding to help them cope with everyday life, let alone the extra demands of the justice system. This means a parent/caregiver, spouse, mentor, teacher, case worker, and probation officer. Remember us, too, the parents of adults; we often have information and can be allies.

Lawyers, judges, court and probation workers, police officers, social workers, and prison guards all need training and continuing education. A probation officer reports that she must be very specific with instructions and directions and not task her clients with too much in case they get overwhelmed. She would welcome more ideas on what works.

It's now impossible to keep up with all the FASD news and research, and FASD is often being brought up in court cases. Canada has big conferences. The one in Vancouver earlier this month had 600 participants from 13 countries. The pre-conference day FASD and the law event had 20 speakers with suggestions and innovative ideas. You can see many of these on the web.

However, Canada's west and north is where the action is. NeuroDevNet provides research and interventions. The Canada FASD Research Network in eastern Canada only includes New Brunswick, not Ontario. The Ontario government is only beginning to acknowledge FASD—maybe. All over Ontario there are grassroots activities by volunteers. A lawyer recently asked our group to provide counselling to help get a client out of jail, but we couldn't do it without funding.

There are two things this committee can do. Invite the FASD play “Jacob's Story” to come from Kingston to present to you. Ryan Leef was there to watch it when we brought them on February 18. You could also listen to the words of people affected who are speaking out more and more, and I could suggest how to do that.

ln Canada we expect our federal government to lead and act on issues of importance like FASD. This committee has a unique opportunity to make recommendations.

ln conclusion, as you study this issue, I hope you will receive information from all parts of the federal government that deal with individuals with FASD. ln 2006, the government determined that the Public Health Agency of Canada would be the lead agency and coordinate activities. Ask them for information on projects funded and efforts to share best practices, which could be useful for the justice system.

Here are four recommendations.

One, provide funding for research and data collection into all aspects of FASD, especially those relevant to the justice system. Two, coordinate national law enforcement and justice system networks and events for sharing FASD best practices, tied to a curriculum for professionals, as well as continuing training. Three, support efforts to create more diagnostic centres across Canada. And four, recommend the creation and funding of case manager positions to help people with developmental disabilities and FASD.

I'd like to thank you for your attention and I look forward to your report and to the changes that may result from your deliberations.

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