A life of misunderstandings

Donna Debolt says that of all the disabilities she is aware of, fetal alcohol spectrum disorder is the most misunderstood. Debolt is an Alberta-based social worker .

Donna Debolt says that of all the disabilities she is aware of, fetal alcohol spectrum disorder is the most misunderstood.

Debolt is an Alberta-based social worker who will teach a course in the Yukon to help service providers better understand and support people living with FASD.

“I work from the premise that if you’ve only got five dollars and five minutes, what are we going to do first?” said Debolt.

The top priority for many people living with FASD is a stable home life. For some people, “their homelessness started in infancy,” said Debolt.

She recently did a consultation with an 11-year-old in Alberta living with the disability.

“He’s had 14 (housing) placements, he’s had 22 school placements and five social workers in three years.”

But housing stability is a problem when the people supporting that individual don’t understand them.

“If you’re a substitutional caregiver, an adoptive family, a kinship-care grandma or auntie and you’re just trying to figure this out on your own, you never will,” said Debolt. “And that’s going to create misunderstanding in the placement, which will have the person eventually, for lack of a better descriptor, kicked out.”

Part of the problem is that people with FASD are very good at convincing you that they understand what you’re saying, even if they don’t.

“They always sound more capable than they are. Always. Their verbal strength fools us with respect to their developmental and functional strengths. When you look more capable than you are all the time, and you sound capable, then it just plays all the wrong support cards.”

Because it’s hard to understand what’s going on in the head of someone with FASD, it’s hard to put in the right kind of supports, said Mike McCann, the executive director of the Fetal Alcohol Syndrome Society Yukon.

“We’ve come a long way with recognizing that, for a person with a physical disability that you can see, you have to adapt their environment so they have equal access to services.”

That means things like ramps for people in wheelchairs and audio signals at crosswalks for people who can’t see, said McCann.

But FASD is invisible. People with FASD also need those kinds of environmental adaptations, but it’s harder to know what those supports should look like, and they vary from person.

Supported housing is an example of an adaptation a person with FASD may require, and the actual design of the home needs to be taken into consideration as well, said McCann.

For example, if someone can’t use a stove or oven but knows how to cook with a microwave, you wouldn’t put a stove and oven in their apartment, but you would want to make sure they have a microwave.

Because people with FASD are good at convincing people that they are more capable than they actually are, we often ask them to do things that are beyond their level of understanding, said McCann.

“You don’t put a blind person in front of a blackboard and tell them to read what’s in front of them. They can’t.”

If you give someone who has trouble keeping track of time a probation order that says they have to be home by 11 o’clock every night, it’s the same thing, said McCann.

The difference is that, unlike the blind person in front of a blackboard, the person with FASD might tell you that yes, they understand and yes, they will do what you are asking them to.

“They often would rather be in trouble than look like they don’t know,” said Debolt.

The result is an over-representation of people with FASD cycling in and out of jails.

“We affectionately say that they serve life sentences in three-month increments,” she said.

The good news is that, with the right kind of help, people with FASD can do well.

“Many people with FASD in my experience are very outgoing, can be very friendly, can be very engaging, and typically want to do well,” said McCann.

Often we only see the negative stereotypes and don’t see people’s strengths.

McCann knows an individual with FASD who learned to tutor others in math, and another who graduated university, he said.

The upcoming training course is designed to build a network of professionals across the territory who understand the disability and can work together to offer the right kinds of supports so that more people living with FASD can stay out of trouble and lead successful lives.

For many people, part of the process will be unlearning what they thought they knew about how to help people living with FASD, said Bob Walker, the FASD project manager with Health and Social Services.

Many social workers have learned that the best intervention is teaching people different ways to do things, he said. But that doesn’t work when you’re dealing with people who don’t connect cause and effect, or who have problem-solving or memory issues.

“If you take all of those things out of the equation, teaching people different ways to do things is not the answer. It’s not a solution,” said Walker.

The real question is, “How do we establish environments, how do we manipulate environments that can benefit individuals, and ultimately support them to have a better lifestyle, to have a better life situation?”

The FASD certificate program is a full 12-day course and is limited to 25 participants.

The first two days of the training will be open to up to an additional 40 people.

The program is being offered in partnership between the Yukon government, Yukon College’s Northern Institute of Social Justice, the Council of Yukon First Nations and FASSY.

A grant from Yukon’s Community Development Fund made it possible to bring the course to the Yukon.

The cost is $250 for the full certificate program, or $150 for the two introductory days. Bursaries are available for those travelling from Yukon’s communities for the training.

Applications are due Jan. 11, and the program runs from February 28 through May 8 in four blocks of training days.

Anyone interested in attending should contact the Fetal Alcohol Syndrome Society Yukon.

Contact Jacqueline Ronson at

jronson@yukon-news.com

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