The Hamilton Spectator
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
“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
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
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