posted on Dec. 18: Making a difference for children, youth with disabilities


[img_inline align=”right” src=”” caption=”Mary Law”]Editor's note: Mary Law was recently named John and Margaret Lillie Chair in Childhood Disability Research, an endowed chair that will support research in McMaster's CanChild Centre for Childhood Disability Research. The chair is supported by the Jack and Ina Pollock Charitable Foundation. CanChild is a unique research centre, partnered with children's rehabilitation centres, families and children throughout Ontario. Law describes the work that will be undertaken with this new chair and the importance of moving research into everyday life.

There are over half a million children and youth in Canada with disabilities. Disability presents complex challenges to families, health, social and education systems, employers and communities. Over the past decade, we have learned a great deal about children and youth with disabilities, their activities and the services they receive, but there remains much to do. Let me highlight a few research directions where I believe increased knowledge is essential.

We now know that providing services for children and their families using a family-centred approach both improves their experience and satisfaction and leads to better outcomes. While families and service providers endorse family-centred service, the challenges of implementing these ideas, day to day, are substantial.

Working in partnership with families and service providers, there are opportunities over the next few years to develop and evaluate innovative strategies to ensure that family-centred service principles are reflected in children's rehabilitation policies and practices.

Ten years ago, a father speaking about his young teenage daughter, said to me, “You spend their young lives trying to get them ready for the world and when the time comes, the world isn't ready for them. So we have to find a way to do it.”

His words resonate as loudly today as they did a decade ago. Children and youth with disabilities, as all children, want to engage in everyday life. Participation in day-to-day activities in their home, neighbourhood, school, and community provides them with experiences to develop and grow.

Yet we know that there are substantial differences in participation between children with and without disabilities. CanChild is currently studying the child, family and environmental factors that enhance participation. This knowledge will be used to develop and evaluate interventions and policy to enhance participation. We believe that this will mean new directions for research, with an increased focus on community-based programs and policy.

There are key transition points in the lives of children and youth. Going to school for the first time, moving into adolescence and into adulthood bring significant changes. Children and youth with disabilities and their families are more vulnerable at these transition times. For example, many young adults with disabilities, once finished school, now live without satisfying involvement in work, or other productive activities.

CanChild is beginning research focused on building the capacity of communities to support youth with all types of disabilities for a successful transition to the adult community. Focusing research on transition points will help us to learn about the specific factors that enable positive transitions.

Children's rehabilitation services provide direct intervention to children and their families. The types of interventions and the ways in which they are provided are changing rapidly. Researchers can play an important role in studying these changes as well as in developing and evaluating innovative approaches to intervention. Rehabilitation services need to be involved in facilitating everyday-life activities for children with disabilities but in a much different way than in the past. Research can help to define innovative and cost-effective service strategies.

Moving research into everyday use is vital. As the amount of information increases, we are challenged to implement new ideas into practice and policy in a timely manner. Studying the targeted dissemination of new knowledge, and innovative practices, can have a positive impact on the thinking and activities of providers, policy makers, parents and community leaders.

A primary activity supported through the John and Margaret Lillie Chair in Childhood Disability Research will be work with students. We need to develop childhood disability researchers for the future. The continued opportunity to engage students at all levels, from professional programs through graduate school to post-doctoral fellowships, is exciting and important for future research.

The funding of a chair in childhood disability is an exciting event for CanChild, for the School of Rehabilitation Science and for McMaster University. The research and education supported through this chair can make a difference for children with disabilities and their families.

Law is a professor and associate dean in the School of Rehabilitation Science and an associate member of the Department of Clinical Epidemiology & Biostatistics.