McMaster University

McMaster University

The Challenges of Childhood Disability

The following opinion editorial was written by Dr. Peter Rosenbaum and appeared in the Hamilton Spectator on Feb. 7, 2011.

The Ontario government last week set up meetings to seek the public's suggestions on the best way to provide more timely, effective and convenient supports to young children and their families. The sessions will be held in several communities, including Hamilton.

This is an important initiative that follows from the Charles Pascal report on early learning, but we must also ensure that the issues of the eight in 100 children in Canada who have a neurodevelopmental disability are also addressed.

Autism and cerebral palsy are among the most recognized of these disabilities, but neurodevelopmental disorders include conditions such as epilepsy, Down syndrome, attention deficit hyperactivity disorder, spina bifida, muscular dystrophy, developmental coordination disorder and many more.

These many conditions have a great deal in common, although they vary enormously in how they were caused, their impact on the course of children's lives and development, and on the outcome. Most chronic conditions in childhood can be managed but not cured, and children become adults with these conditions. There are several reasons why they need to be considered collectively.

I had the opportunity in December to speak about the unique aspects of childhood disability to Canada's House of Commons subcommittee on neurological disease in Ottawa on behalf of the CanChild Centre for Childhood Disability Research at McMaster University.

The way we think about children and their disabilities makes a significant difference in what we do. It is therefore very important that we remember that these children are children, not small adults. All children, including those with developmental disorders, are developing individuals. Rehabilitation services of the types offered to adults do not address the needs of the developing child and their family.

This is particularly an issue when children with disabilities are making the transition to becoming adults with these disorders. Transition is a difficult time of life for anyone, but for teens and young adults with disabilities there are many gaps and challenges, as health and other related services for either children or adults are not addressing their specific life needs.

We must also consider the families of children with disabilities. It is estimated that one in five families in Canada is raising a child with a neurodevelopmental or behavioural problem, and there is solid Canadian research about the considerable toll this takes on the physical and mental health of such families.

We also have good evidence that people who experience services that are attentive to the needs of the family report better mental health and satisfaction and lower stress. It is clearly essential to the child's well-being that we develop and provide family-centred services and supports.

Beyond how a health condition impacts the physical aspects of a person, we need to consider how the condition affects activities — what the child is able to do in daily life, and participation — how he or she can be involved in life in ways that are meaningful to them. Everything done to help the child should be directed at promoting function and activity in safe and effective ways to enhance their development.

We can rarely fix these impairments, and more treatment isn't necessarily better.

We need to have development, participation and family well-being as the primary goals of services, to help parents help their disabled children become adults who are as capable, self-confident and independent as possible.

Canadian research in childhood disability and family well-being is highly regarded internationally, but we need to continue the essential research in this emerging field.

We are at the cutting edge of new ways of thinking about childhood neurodisability; however, there is a powerful imperative to assess the effectiveness of our interventions. We must adopt and promote those interventions that work, and discard those that do not.

We need to support collaborative national research programs, built on modern thinking about children, families, and development within a life-course approach. We need to find ways to get this new knowledge out so it can be shared quickly and effectively with those who will use it.

Excellent research partnerships exist in Canada that should be further developed so Canada can continue to lead the world in understanding neurodevelopmental disorders of childhood.

These are the ways we can help families in the Hamilton area, as well as across Canada, who have a growing child with a neurodevelopmental disability.

Peter Rosenbaum, MD, FRCP(C) is professor of pediatrics, McMaster University, director of McMaster Child Health Research Institute and co-founder, CanChild Centre for Childhood Disability Research.

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