In The Politics of Autism, I write:
Autism is a “pervasive developmental disorder,” which means that it affects most areas of a person’s life. It is also a pervasive policy issue, straddling health, education, scientific research, insurance regulation, and civil rights, among other issues. No government agency has exclusive jurisdiction over all of these areas.At Educational Policy, Bryan Parsons has an article titled "Local Autism Policy Networks: Expertise and Intermediary Organizations." The abstract:
The increasing prevalence of diagnoses for autism spectrum disorder (ASD), now one in 68 children according to the National Institutes of Health (NIH), presents a number of policy implications. In particular, many of these children become eligible for special education services under the Individuals With Disabilities Education Act (IDEA). Given the specialized expertise and resources required of local education agencies (LEAs), how do they respond to this implementation challenge? In May 2015, an online survey was distributed to various governmental and nongovernmental actors in three Virginia localities to measure the extent of collaboration in local autism policy networks. The findings suggest that these networks are driven by autism-related information, and that nonprofit organizations act as intermediary organizations that bridge disparate stakeholders. The results contribute to our understanding of fragmentation across policy subsystems, with the focus here on education policy, and the implementation challenges related to a rapidly changing policy issue.From the article:
The diversity of organizations within local autism policy networks reinforces the notion that the public–private environment in local education is indeed “hyper-pluralistic” (Stone et al., 2001, pp. 47-49), which may have some implications for various services provided to individuals on the autism spectrum. First, state and local agencies have implementation responsibility under the IDEA guidelines, and the ubiquitous nature of nongovernmental organizations in these networks does raise questions about what accountability mechanisms, if any, are in place to ensure appropriate services for autistic children and young adults. To what extent is collaboration in these policy networks focused on establishing common standards of care for all involved organizations, and who or what enforces these standards? Although public–private partnerships may indeed be a necessity for LEAs to enhance their capacity to meet the special needs of this population, it is critical for policy networks to evolve to enhance trust, communication, and accountability in the management of any good (Berardo & Scholz, 2010; Feiock &
Scholz, 2010; Lubell et al., 2014; Ostrom, 1990). Second, although a pluralistic environment necessarily involves a diversity of organizations, not all organizations are central to the collaborative process. For example, not every LEA in the three localities is mentioned as a collaborative partner, and even some of the LEAs involved in the policy networks in Figure 1a appear to be peripheral actors in the network. Understanding the factors that contribute to collaborative partnerships in these networks and the processes that might produce more active roles for all LEAs, where the majority of children
on the spectrum receive services, will be key to future research and policy recommendations.