McMaster University

McMaster University

Taking control and telling their own stories

The Hamilton Spectator
Amy Kenny
December 6, 2012

For Jan Burke-Gaffney, watching her son and daughter take their lives into their own hands has been a great experience.

Don’t worry. It’s not as risky as it sounds. Her children, Emily, 26, and Jesse, 29, simply started using the Youth K. I. T. (Keeping It Together) binder to record goals, organize appointments and list their medications.

It’s a system that gives the siblings, both of whom have Down’s syndrome, confidence and security, as well as a practical place to gather answers to the questions they’re asked regularly.

The Youth K.I.T. was developed by McMaster University and the Hamilton Family Network. It follows on the heels of the Parent K.I.T. (a tool for parents of children with special needs) by offering those aged 12 to 19 the opportunity to take an active role in planning their own lives.

Burke-Gaffney says when Emily and Jesse were younger, they were constantly meeting new teachers, doctors and assistants. It was nerve-wracking for them, but the kits have made things easier. They filled the binders with certificates from school and pictures of themselves with their friends, so the kits also helped service providers see Emily and Jesse as people rather than a list of medications and milestones.

“It helped a lot when they had the kit,” says Burke-Gaffney. “They would just clutch that kit and walk in with it, and as soon as they would give it to the person or open it, you could just see the whole atmosphere in the room change. Even a doctor who might have been reserved was so much warmer and open. If they knew they could take the kit, I think they felt more secure about meeting new people.”

According to Matt Freeman, a CanChild researcher and doctoral candidate at McMaster who started working on the Youth K.I.T. in 2006, the testing of the Parent K.I.T. resulted in one of the kids asking where the youth version was.

“This is really a youth-driven tool,” says Freeman. “Unlike other tools that have been developed for transition (into adolescence), it’s not driven by a professional perspective, it’s driven by youth themselves.”

That’s one of the reasons the Youth K.I.T. is now available as an online resource, one that users can work through at their own pace and according to their own goals.

Some might be interested in the sections on starting high school and planning parties, while others want to focus on looking for work and budgeting finances.

Either way, Freeman says that among the 36 people who participated in the pilot study (from 2006 to 2010) and the 60 participating in the present study, the kit has resulted in an increased sense of self-determination and control over their own lives.

“It gives youth the opportunity to give, get and organize their own information and not have their parents answering questions for them or having other people answer questions or set their goals for them,” he says.


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