Dana Lee Baker

Neurodiversity, neurological disability and the public sector: notes on the autism spectrum

Neurodiversity and neurological disabilities reflect rising public sector challenges. Both refer to the same set of medical conditions, but speak to different aspects of diversity affecting the public sector. Neurodiversity describes features of neurological difference associated with individual or community identity that is a more or less elective choice of those experiencing neurological difference. Neurological disability refers to impairment of socially determined major life functions caused by observable, diagnosable difference in an individuals brain. Both neurodiversity and neurological disability produce challenges and opportunities for public programs and societies. This article employs findings from a survey of families with children with autism to examine administrative implications of neurodiversity and neurological disability. The findings suggest that in managing new (and rising) kinds of diversity, public administrators must navigate sharpening divides between interests related to inclusion and those related to identity.

Mostly the mother: Concentration of adverse employment effects on mothers of children with autism

Abstract Creating comprehensive and effective social welfare and anti-poverty policy is an ever-elusive task. A key component of such policies and their related programs is the encouragement and protection of parents’ employment. However, such efforts become more complicated when families are faced with additional challenges such as difficulties, which may arise when parenting a child with a disability. Although both paid employment and parenting are widely understood as far from gender-neutral activities, how adverse employment effects become concentrated on mothers is less well understood. This article examines circumstances under which negative employment effects become concentrated on mothers of children with autism. The results of the analysis suggest focusing policy on addressing short term threats to the continued success of established careers and on workplace reentry could help counter factors which tend to result in having mothers’ careers disproportionately affected as a result of having a child with a disability.

Comparative Policy Entrepreneurship: The Case of Autism-Related Policy in North America

Abstract Policy entrepreneurs are expected players in modern democracy. Nevertheless, the relationship between political context and successful policy entrepreneurship has been incompletely addressed. This is particularly the case when it comes to public health issues. We examine comparative policy entrepreneurship by comparing the emergence of policy entrepreneurs surrounding autism in Canada and the United States. Our study of federal autism policy in Canada and the United States finds that policy entrepreneurs in the two countries created different public problems and policy linkages to address the same emerging social condition.

The Financial Side of Autism: Private and Public Costs

First identified by Leo Kanner in the early 1940s, autism is a biologically based developmental disorder that impairs an individual’s ability to communicate, build relationships, and relate appropriately to the environment (Kanner, 1943). Diagnosis is usually made in early childhood after a multi-disciplinary assessment of behavior, developmental level, and communication ability. Boys are four times as likely as girls to be affected (Fombonne, 2003a, 2005). Initially, autism was considered a rare disorder. An early epidemiological study conducted in England in the 1960s documented a 0.05% prevalence rate (4.5 per 10,000) (Lotter, 1966). Prior to the 1980s, recorded incidence of autism disorder in the United States was also low, affecting about 1 in every 2,000 children (Fombonne, 2009; Rutter, 2005). In the 1990s, the American Psychiatric Association broadened diagnostic criteria and included Asperger’s syndrome and Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS) with Autism Disorder under Autism Spectral Disorder (ASD)(Centers for Disease Control, 2009). In this article, the terms autism and ASD are used interchangeably. Autism is now known to affect children world-wide, regardless of race, ethnicity, or socioeconomic status (Naqvi, 2009). Documented prevalence rates vary. In the United States, the current ASD prevalence rate is 1 in every 110 births (1 in 70 boys) (Centers for Disease Control, 2009), representing an average increase of 57% over 2002, 600% over the last two decades (Dawson, 2010; Wang & Leslie, 2010). Prevalence rates in Western Europe, Canada, and Australia are similar to those in the United States (Grossman & Barrozo, 2007; Naqvi, 2009), whereas rates in Japan and China are somewhat higher (Naqvi, 2009; Wong & Hui, 2008). Prevalence rates in Western Europe and Canada are similar to those the United States. In recent years, the number of cases in Latin America, Asia, the Middle East, and Africa has increased as well (Grossman & Barrozo, 2007). No consensus regarding cause exists (Fombonne, 2003b). Reasons for the surge in incidence of autism are ardently debated. Autism has no known genetic or biological markers. Diagnosis relies on observation of behavior and professionals may differ in application of diagnostic criteria. Some have argued that the recent surge in numbers simply reflects increased awareness of symptoms and better diagnostic tools (Cohen & Spenciner, 1996;

Defining autism in Canada: Unfolding the public aspects of neurological disability

Abstract Modern disability policy seeks a balance between individual and social responsibility for disability. Striking this balance involves redefining issues related to disability. This article presents an analysis of the issue definition process on autism in Canada. The findings suggest although autism became an increasingly present issue in public discourse in Canada during the last 20 years, no specific aspect of the autism experience became defined as an urgent public problem. Furthermore, public discourse surrounding autism focuses on health care, challenging ongoing development of rights-based disability policy.

Case Study of Interagency Coordinating Councils Examining Collaboration in Services for Children with Disabilities

Children with disabilities often require a variety of services to develop to their full potential. Currently, centralized services and residential institutions have become less accepted as a matter of course. Interagency Coordinating Councils (ICCs) were created to lead integration of services for children with disabilities in the context of decentralized service provision and a growing preference for person-centered, community-based services. In this article, the authors examine the federal ICC and several state ICCs in a case study of the challenges associated with orchestrating multilevel interagency collaboration. Emergent themes of interorganizational infrastructure, the shaping of participation, and service purposes and priorities are discussed as important elements of the ongoing creation of a new governance of services for children with disabilities.

Comparative issue definition in public health: West Nile Virus, mad cow disease in blood products, and stem cell research

Abstract Differential issue definition might be expected to be most prevalent in domestic policy such as health care, education and social welfare policy. However, in the context of globalization, there is rising concern that issue definition will become homogenized. A comparative analysis of whether nation-specific issue definition takes place is key to understanding the nature of policy transfer, convergence and divergence. In this article, issue definition of three issues drawn from the continuum of public health challenges is examined: West Nile Virus; the potential for mad cow disease to infect donated blood and blood products; and stem cell research. Our comparative analysis of issue definition revealed heterogeneous experiences of modern public challenges demonstrating both dissonance and difference in national conceptions of risk, science and public health in even the most modern of public health challenges.

Going Camping: A New Strategy for Preparing Academically Diverse Students

Abstract Students enrolling in public affairs come from increasingly diverse academic backgrounds, and, although that diversity is a valuable asset, it represents a challenge for institutions, faculty, and students. Many students from nontraditional backgrounds lack adequate preparation in the public affairs foundation:American government, political science, mathematics, statistics, and economics.The authors examine the common strategies that programs use to ensure that students have an appropriate knowledge base before beginning a graduate program, and then describe and evaluate a tactic referred to as “camping”—intenstive instruction outside the regular academic year. Based on a study of the Web sites of sixty NASPAA-affiliated programs, the authors find that camping, although not yet a widely adopted preparation method, is a promising approach to leveling the playing field for incoming students.They conclude that institutions and students would be best served by multiple methods of preparing students for graduate study in public affairs.

Defining diversity: A mixed-method analysis of terminology in faculty applications

Abstract A desirable societal goal may not imply a common understanding of that goal. As organizations seek to foster inclusion through a focus on diversity, understanding the operational definition employed by stakeholders becomes important. This study focuses on how candidates applying for employment address their diversity-related qualifications when specifically asked to do so. A model-driven qualitative coding system is used to characterize the diversity-related terminology in the cover letters of 111 applicants to a post-doctoral faculty fellowship position at a research university open to all academic disciplines. Applicants describe their strengths related to developing diversity-related curriculum and scholarship, aiding the recruitment and retention of a broad range of students and faculty, and establishing community partnerships to advance diversity. The analysis of applicants’ letters indicates that applicants refer to race, ethnicity, gender, and class dimensions of diversity most frequently, suggesting that operational definitions tend to be more limited to traditionally and legally established taxonomies of human difference.

Policy Awareness, Financial Hardship, and Work Impact

Individuals with disabilities often report difficulty interacting with health care professionals. Addressing this challenge requires greater understanding of factors that exacerbate the odds of negative interactions between health care providers and patients with disabilities. Drawing on the qualitative research describing the features of such incidents, we use logistic regression to explore two dimensions of this dynamic: negative experiences with health care providers (e.g., doctors, specialists) and negative experiences with health insurance carriers (e.g., for profit or non-profit health insurance organizations). Using a non-probability sample of American families who have a child with autism spectrum disorder (ASD), we find that negative experiences with health care providers are associated with the family’s income level, as well as changes in parental labor force participation. The odds of a negative interaction with the insurance carrier are intensified when the family experiences financial difficulties and when they have a negative experience with the health care provider. Finally, families who are aware of laws and policies regarding ASD also report increased odds of negative experiences with their insurance carrier but not their health care provider. Policy implications of our findings are discussed.