several hands of different sizes and colorsI’m sitting in my office with my patient, who is a young girl with significant learning disabilities, and her mother. Since the last time I saw them six months ago, she continues to struggle with academic progress and behavioral problems at home. At our last visit, I had provided her mother with a list of recommendations: 1) have the school repeat assessments, 2) obtain in-home therapy supports, and 3) enroll in after-school programming. I ask her mother about each of these recommendations, and feel my shoulders drop as she explains why she was not able to complete them.

I am a pediatrician primarily working with children who have developmental disabilities and their families. For my patient, my recommendations alone were insufficient to improve her well-being. Why is it that some patients are able to access necessary health-related services and others are not? Aside from the more obvious logistical barriers (e.g., insurance, transportation, time), an individual’s social capital influences access and health-related outcomes. Although the definition of social capital varies, there are two key components: 1) relationships and social structures that are based in trust and norms of reciprocity, and 2) self-determination encompassing goal-setting and making decisions to work toward reaching goals. For individuals with disabilities and their families, social capital influences their ability to be fully included within the community, access social supports, and increase their quality of life.

As I delve deeper into this particular visit, I appreciate that the child and her mother depend upon a handful of neighbors to help them out, and they do not have much social connections outside of this immediate network. Their native language is not English and her mother is not confident that she is able to communicate effectively with the school or healthcare systems. Mother and child both feel disempowered to change their long-term outcome, instead trying to overcome everyday obstacles.

As it relates to health outcomes, social capital might influence an individual’s access to health relevant information, the degree of informal support in situations of illness, and the ability to self-advocate for health-promoting services/supports. For this visit, I take a step back and address these points. I discuss how she (the parent) might access information on learning disabilities, as well as information on potential services that target her child’s learning disabilities. We work through the informal system of supports that are present and discuss how it can be strengthened. For example, might it help to go with someone the mother already has a relationship with to the school to request for additional testing. We also discuss how new supports might be made with other groups of individuals. Finally, I help my patient and her mother define their own set of goals and the steps that they would take to attain those goals. I end this visit with no recommendations, only having tried to help this family think through how to build social capital.

1 Comment on Social Capital, Disability, and Healthcare

  1. The Federation for Children with special needs and Family Ties are two amazing resources that all families with special children can access for free resources, referrals, support and advice for multicultural families.

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