The Winds of Change in Disability and Health
There is a wonderful book that everyone should read - "The Tipping Point," by Malcolm Gladwell. The book is about changes that occur to systems, communities, or nations based on a few people starting a movement and the rest of a community/society following through. I believe we're starting to reach a "tipping point" in disability and public health. More and more public health professionals are considering the disability perspective in their initiatives.
Last week, I received a call from the Chair of a soon-to-be-published Institute of Medicine report that addresses the need for U.S. policy change related to early childhood obesity. We had an interesting discussion about the importance of including something in the report regarding children with disabilities and their families. As I informed him, most researchers who don't work in the disability field, but own the critical mass of federal resources to do research on certain health issues, such as obesity, consider these issues to be someone else's problem. Although I was contacted after the committee had already met several times and drafted the report, it was a breath of fresh air to be asked how the report could be more inclusive of families who have a child with a disability. In the past, this would never have occurred. The report would have been published, targeted policy changes would have been largely irrelevant to many children with disabilities and their families, and, as a result, people in the disability community would have voiced their concerns.
Internationally recognized scholars who do good research are usually invited by numerous federal agencies to prepare high-level reports. Historically, most, if not all of these funded studies exclude people with disabilities. That's the way it works in research: Get federal funds, and target a homogeneous group, so that you don't have any "noise" in your data. Good randomized, controlled trials exclude those who cannot meet the criteria, and often those criteria work against people with disabilities. For example, a child with a physical or cognitive disability who is overweight and in need of an intervention can't read the study materials, can't find accessible exercise equipment, or can't even get an accurate measure of body weight because the school or clinic doesn't own an accessible scale.
Families of children born with a disability must be a critical piece of our nation's agenda to reduce obesity and improve the overall health of the population. Obesity is higher in youth with disabilities, which leads to a greater number of secondary health conditions and poorer prognosis of good health in adulthood. There is a strong need to build inclusive research agendas that target underserved populations, including children with disabilities and their families.
The "winds of change" are upon us - government agencies are becoming more aware that the disability community cannot and should not be ignored. With a few modifications or adaptations to a research protocol, many children or adults with disabilities can be included in these studies and statistical analyses can be conducted with these smaller subgroups. If it takes a few extra research dollars to make this happen, the return on the investment is well worth it. We've reached the "tipping point" and there is no turning back.