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Wednesday, July 3, 2019

Citizens as Autism Policy Entrepreneurs

The Politics of Autism includes an extensive discussion of parental activism on issues such as insurance.

Timothy Callaghan and Steven Sylvester have an article at Policy Studies Journal titled "Private Citizens as Policy Entrepreneurs: Evidence from Autism Mandates and Parental Political Mobilization."  The abstract:
Growing bodies of research in the social sciences point to politicians, bureaucratic officials, interest groups, and other actors who serve as policy entrepreneurs. In this paper, we argue that private citizens can also serve a primary role as policy entrepreneurs. To analyze this phenomenon, we investigate the behavior of private citizens and their role in changing state policies surrounding insurance mandates for autism coverage. Using a thematic analysis of focus groups and interviews conducted with individuals active in the push for autism policy change, we demonstrate that private citizens meet all of the requirements identified for policy entrepreneurs in the existing literature. We then investigate when, why, and how these private citizens step forward into the policy process as entrepreneurs. We show that entrepreneurship occurs when private citizens have needed resources, a sense of duty to fix a policy status quo they see as unjust, and a stake in policy change. We conclude by discussing the importance of our findings to the study of public policy and their generalizability beyond autism policy.
From the article:
Although these resources were critical to the engagement of our policy entrepreneurs, our participants also suggested that they were driven into the policy process by a sense of duty to fix a status quo they saw as unjust. There was a universal sentiment among our entrepreneurs that families should not have to foot the bill for needed autism treatments and that the policy status quo was “fundamentally wrong” and that policy change “needs to happen right now.” Our entrepreneurs regularly pointed to a sense of duty given their advantaged socioeconomic status. They “recognized the injustice of what was happening and the injustice of the fact that [we] were very blessed that we had the financial resources and the education to … fight for it.” Another entrepreneur expressed similar sentiments when she said:
It's so wrong. And like the fact that we have two advanced degrees, could mortgage our house, and you know, get treatment for our kid. And then this whole part of the population couldn't. I mean, certainly when we started, I don't think we were thinking, like, “Oh, let's go get everything.” But it just … you have to. Cause … it's so … so wrong.
Some suggested that they “began to be plagued by the thought of, okay, what does your average family do” when confronted with this issue, a question that led to anger and entrepreneurship for many. This sentiment was particularly well conveyed by one mother:
I knew the laws, I knew how to get it done. And then my neighbor couldn't. My sister couldn't. And I was pissed. So it was a combination of, you know, the injustice, anger over the injustice of it, and capacity, because … I have advanced degrees, I had the coverage, I had the experienced, my kid was covered, now let's fix it for other people.