I just returned from Springfield MA, where I am working with some DDS Family Support Centers. We are looking more closely at family engagement patterns for families they serve who have children with disabilities. The concern is that these families engage less in the general community. They are concerned about this for a variety of reasons. One is that these families are at risk of being more socially isolated - and we know that social isolation is related to a variety of maladies. Another concern is that when families who have children with disabilities are more isolated, other families have less exposure to disabilities and this affects attitudes and stereotypes toward disability.
I have been interested in engagement patterns of both families as well as with individuals who have disabilities. I believe these engagement voids have powerful negative consequences both internally and externally. Over the past 10 years we have been helping individuals and organizations think more about ways and means to have more effective engagement patterns. In this time period we have conducted a couple formal studies on the matter. One study was chronicled in the Canadian Journal of Disability Studies, Vol 5, No 4, 2016, titled, “Somewhere to Live, Something to Do, Someone to Love.”
More recently we conducted an unpublished study with 50 families, half who had a child with disability in their family. This study concluded that families who had children with disabilities engaged dramatically less than families without disabilities and stated 3 clear reasons. One was economics; quite simply disability is expensive and these families did not have as much disposable income. The other reason was logistics; again, families who have children with disabilities have to consider so many more factors when they go out to engage. And the last factor was stigma. That is, these families reported that they did not feel welcomed.
These findings, and other reported concerns suggest that we all need to think about our behavior whenever families or individuals with disabilities try to join in. In fact, we should do our best to encourage and support people in this effort. The more individuals or families with disabilities engage, the better we all become in the process.