North struggles to develop FASD services

North struggles to develop FASD services

Imagine being a single mom from Caribou Lake or some other Northern Ontario community and having to travel back and forth to Toronto with three kids in tow for a diagnostic assessment at a Fetal Alcohol Spectrum Disorder (FASD) Clinic.

Until recently, families with children suspected of having the disorder had no choice but to make the long haul down south to the FASD Clinic at St. Michael’s Hospital.

Recognizing the hardship and the cost to families in the North, St. Mike’s telehealth project manager Sandrine Camera and FASD clinic director Dr. Brenda Stade began delivering a monthly clinic via the Ontario Telemedicine Network last year.

FASD coordinators and advocates in the North are pleased that they don’t have to send families to Toronto, but are also working to develop diagnostic services within the region.

A disability affecting children whose mothers drink alcohol during pregnancy, FASD is associated with maladaptive behaviour resulting in poor social relationships, academic underachievement and trouble with the law.

Diagnosis

A diagnosis is important because it makes it clear to parents, teachers and judges that “It’s not just a developmental delay or bad behaviour. It’s actual physical brain damage,” said Elaine Cousineau, an FASD advocate in North Bay.

Cousineau, who stumbled across FASD while trying to figure out what was troubling her adopted daughter, now counsels families, makes presentations to graduating teachers at Nipissing University and goes to bat for children with FASD facing suspension from school.

“Punishing children with FASD is not effective,” she insists. “It’s very detrimental. We’re not only punishing them for their behaviour. We’re punishing them for their disability.

“You have to make allowances for them. If you have a child who is in a wheelchair, you do everything you can to help him. You build a ramp, for example, and you don’t say ‘Oh, you’re doing better now. We’ll take the ramp away.’ If you put supports in place in the classroom for a child with FASD and the child begins to improve, you can’t remove the supports and return the child to a regular class. It doesn’t work.”

FASD Stakeholders of Ontario, a group funded by the Public Health Agency of Canada, is helping to kickstart the establishment of diagnostic clinics in North Bay and Thunder Bay by providing some financial assistance for training, and groups of health-care professionals are coming together to provide the required service, but there are still a number of hurdles to cross.

Some communities in Northern Ontario are further advanced than others. Thunder Bay, for example, is fortunate to have a full-time FASD coordinator employed by NorWest Community Health Centres and hopes to have a diagnostic clinic up and running within a year.

“Physicians can bill through OHIP, but co-ordinators need funding,” explained Stade.

Unfortunately, funding for FASD services often falls between the cracks. A clinic with sites in Kenora and Sioux Lookout operated for 18 months but closed in July 2006 when transitional funding from the Ministry of Health ran out, while Cousineau in North Bay works one or two days per week at the Community Counselling Centre and otherwise performs the role of a co-ordinator without remuneration.

The Counselling Centre hired Cousineau to do a needs assessment several years ago with assistance from Public Safety Canada’s National Crime Prevention Centre, but several subsequent proposals to fund services have been turned down.

Sioux Lookout

The Sioux Lookout First Nations Health Authority and the Kenora Health Access Centre submitted a proposal to the Ministry of Health in March to re-establish the clinic, but they are still waiting for an answer.

Judy Kay, co-ordinator of Sioux Lookout’s Healthy Generations Family Support Program, isn’t convinced that proper diagnostic assessments can be done via teleconferencing, so families desperate for a diagnosis are sent to Sick Children’s FASD clinic in Toronto.

The cost of flying to Toronto and staying at a hotel precludes most families from making the trip, with the result that most children are never diagnosed and never given the support they need.

When the clinic was forced to shut down, there were 214 children on its waiting list, said Kay.

“Education is absolutely crucial,” said Maureen Parkes, FASD co-ordinator at the NorWest Community Health Centres. “Here in Thunder Bay, we do very intensive training for probation officers, the police, teachers, child protection agencies and foster parents.

“Nobody just comes in and gets assessed. We meet with people three, four, five times prior to the actual assessment date to start the process of learning. That’s important because, quite often, people come in with a different idea of what’s going on. A lot of people aren’t aware of the fact that children with FASD actually have brain damage.

NorWest Community Health Centres offers an eight-week Parenting Caregiver Program and parents can participate in a support group, FAS Information Northwest. In North Bay, Cousineau has been the driving force behind FASD North, which meets monthly.

Stade, a nurse practitioner with a PhD in Medical Science, says children with FASD do better in smaller classes with less stimulation, while Camera, St. Mike’s telehealth program manager, points out that kids with FASD are weak in some areas, but strong in others, “so positive feedback and encouragement are important to give them self-confidence.”

The First Nation community, including Indian Friendship Centres, the Union of Ontario Indians and other organizations are tackling FASD head-on, said Cousineau.

“They have been a wonderful resource for me. They taught me everything I know in the beginning.”

At special celebrations for young couples, she said, both parents are urged with “cheering, clapping and drumming” to abstain from alcohol during pregnancy.

Contrary to what many people may think, added Cousineau, the person most likely to have a child with FASD is white, professional, well educated and in her 30s.

“People have the misconception that you have to be an alcoholic, and you don’t.”

According to the Public Health Agency of Canada, there is no safe amount of alcohol during pregnancy and no cure for FASD.

However, said Parkes, “One of the things we know for sure is that with proper support and proper interventions in place, most children with this disability will respond.

Sometimes, their behaviours are so maladaptive that they are seen as bad people, but they’re really not.”

Some resources for FASD

Initiating and Running a Fetal Alcohol Spectrum Disorder Clinic, published by the Ontario Federation of Indian Friendship Centres. Available on the Internet at www.ofifc.org

Damaged Angels: An Adoptive Mother’s Struggle to Understand the Tragic Toll of Alcohol in Pregnancy, by Bonnie Buxton,
www.damagedangels.com

The Public Health Agency of Canada, www.phac-aspc.gc.ca/fasd-etcaf

Elaine Cousineau,
elainecousineau.com

 

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