Advocating for children with impairments and their families: a proposed model

A major challenge for service providers in the field of childhood disability is how best to advocate for the children and families with whom we work. We are frequently asked to complete letters, tax forms, and other documents to attest to the children’s and families’ needs for additional services, funds, equipment, respite, and so on. In many jurisdictions, there is an implied – perhaps even directly stated – expectation that we paint a worst-case picture to convince decision-makers that the child and family deserve help and support. This can put us as clinicians in an invidious political and ethical dilemma. Our optimism, and our efforts to present families with evidence of improvement, come up against the expectation to present a bleak picture of their situation.

How might this discourse be improved? There are important changing emphases in our field. We are increasingly focusing on strengths and adaptive functioning.1 Can we translate these ways of thinking into approaches to the advocacy challenge with fresh eyes? Such change is both necessary and possible.

I believe that we can build our case on the International Classification of Functioning, Disability and Health (ICF) ideas about capacity and performance2 and the rights of people with disabilities.3 First, we can start our advocacy efforts by identifying the child’s and family’s strengths – their best capacity, whatever that might look like. What are they bringing to the table, for which the additional supports will be an essential contribution toward even better functioning? What barriers and limitations in the environment, and what human factors, contribute to the gaps between capacity and performance that almost always exist?

Second, having painted a picture of the capability/capacity gap, we then can identify how the resources for which we are advocating will help to address limitations in child and family functioning and well-being. This individualized, contextualized advocacy will enable decision-makers to appreciate how the recommended resources of funds, equipment,4 and human supports will be used. Third, if we can articulate the goals to be addressed with these resources – goals co-developed with families and service provider advocates, and with children wherever possible – there will be a specific targeted focus for the advocacy being formulated. Decision-makers will be able to understand the expected value and anticipated impact of the resources they are being asked to approve.5

There could be several potential advantages to this strategy. For the family, there will be empowerment and recognition of strengths, with an issues-based identification of goals. For advocates, focusing on strengths is, or certainly should be, our natural inclination. Not needing to exaggerate the impairments would be morally and ethically welcome changes from what currently happens. And, for the funders and the systems, there would be an opportunity to see the people and the populations they are meant to serve in a stronger and more positive light. This would allow them to move from an approach that often sees people they are being asked to support as victims, to people with impairments but also abilities, ambitions, and goals. Such revised perspectives should enhance their own fundraising and advocacy efforts.

How do we make this happen? I believe that as professionals in the field of childhood disability we need to ally ourselves with family leaders. We can share these ideas, encourage others’ input, secure their endorsement of this changed perspective on advocacy, and collaboratively approach the leadership of agencies, funders, and other decision-makers. If these ideas have currency to all the players involved – especially if we can help people see that everyone stands to benefit from this reformulation of ‘advocacy’ – the discourse can be changed.

Such changes are long past due, and together we can make them happen.

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