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Little is known about the health care utilization of children with autism spectrum disorders (ASD) in rural areas. Individuals in rural areas experience difficulties accessing health services and consistently show poorer health outcomes, greater chronic disease prevalence, and shorter life spans than individuals in suburban and urban areas. Autism presents a unique lens to examine potential rural-urban disparities. Because autism is idiopathic, disparities cannot be addressed through public health interventions targeted at health behaviors. Treatment is elective and non-curative, which means families may choose what level and intensity of services their children receive. This research project examined potential rural-urban health care disparities of children with ASD in three capacities. The first study used medical claims data from the Partners for Kids (PFK) accountable care organization (ACO). Results showed that children in rural areas are no less likely to initiate physical, occupational, or speech therapy than children in urban areas. However, of those who do, children in rural areas utilize roughly a third as many visits. Children in rural areas also used slightly more primary care services than children in urban areas. These differences were not explained by the presence of ADHD, a common comorbidity in the ASD population. The second study utilized the Pathways to Services and Diagnosis, a national survey of parents of children with ASD and/or intellectual disability, to examine the roles of disability presentation, parental concerns, and reactions of health care providers in accounting for rural-urban variability associated with the age at which children are diagnosed with ASD. Children living in the most rural counties were diagnosed, on average, 18 months later than children living in large metropolitan areas, after adjusting for demographics, parental concerns, and health care provider reactions to parental concerns. The third study also utilized data from the Partners for Kids Accountable Care Organization and showed that, among children with ASDs and co-morbid ADHD, those living in rural areas are 75% more likely to have at least one injury-related Emergency Department visit. The results of this research demonstrate significant rural-urban disparities in the diagnosis and health services utilization of children with autism spectrum disorders. Early and intensive intervention is the best approach in treating symptoms of autism; delayed diagnosis and intervention may result in less than optimal functioning and future dependence on health care and social services. This dependence is compounded by the lack of access to services characteristic of many rural areas.
Iowa needs a statewide coordinated autism early identification system. Such a system would be child and family centered with care coordinated at the individual level. A statewide system will require training a wide variety of professionals who regularly interact with children at very young ages. This will not only ensure early identification but will help Iowa families access services early which increases the likelihood of positive outcomes for Iowa children. Finally, Iowa must commit resources for the development, implementation, and evaluation of a coordinated autism early identification system. There needs to be an interagency agreement created amongst state agencies including IDPH, DHS, Dept of Ed (Early ACCESS), CHSC, DVR, and University of IA Center for Excellence for ASD to plan, implement, and evaluate a coordinated system of care. Currently Iowa lacks a standardized early identification system for autism and lacks a standardized approach to training professionals to implement an early identification system specific to Autism Spectrum Disorders. Autism Spectrum Disorder screening is not a basic part of well child care in Iowa. Training efforts do not meet the definition of a comprehensive system. Data reveal that children and families in Iowa benefit when and early diagnosis is made. Data also reveal that the most benefit is gained when the early identification system consistently leads the family to coordinated care after diagnosis. Unfortunately, there is great disparity in knowledge and skill levels across the state. This needs to be remedied. Resources at community and state levels have not been committed to develop, implement, and evaluate an early identification system. When an early identification system is developed and implemented throughout Iowa, a network of trained professionals who mentor and communicate will develop. This network will also provide a vehicle for data collection and evaluation of an early identification system, including the efficacy of training and the individual coordination of care post diagnosis. The issues outlined above are not unique to early identification services. Individuals with Autism Spectrum Disorders (ASD) require a coordinated system of care that includes both public and private sector solutions. The necessities of people with ASD require a long-lasting solution to address needs as the individual's needs change; this currently cannot be obtained due to the lack of coordination in the public and private sectors. The current system in Iowa places the burden on families to seek out information on autism, learn what services are available, apply for those services, and once receiving them, coordinate services from different sources. At the same time, it provides few resources to assist families in doing so. Although there may be pockets of quality services, as a whole, the state is ill prepared to meet current and future demands. State programs are currently underfunded, scattered, and exclusionary by not allowing access to proven treatments. Furthermore, private services are often unobtainable due to cost and distance. Exacerbating the current lack of coordination is a rural landscape, a deficit of trained professionals, and an exploding autism population. Iowa needs to act quickly to enhance current systems. Iowa needs to create new programs that will allow data collection, resource pooling, collaboration, and a coordinated care system that includes private and public partnerships. One of the greatest barriers to a comprehensive treatment plan is how to ensure a balanced approach to financing treatments for caregivers. It is our responsibility to ensure that a proper balance and financing options are set between public, private, and personal responsibility. Currently a majority of Iowans finance what care they can afford and not necessarily the best care available. This does not always lead to the best outcome for independence for those with ASD. In addition to lack of financing options, a lack of adequate reimbursement to providers currently providing services hampers delivery of service by creating unnecessary waiting lists. The 2008 legislative session saw the introduction of SF1/HF1 to bridge the gap between quality care and the ability to access care due to lack of coverage in the private sector. This council urges the Executive Branch to work with the Legislative Branch to pass this legislation for Iowa's families in the 2010 session. Last year the Legislative Branch required the Iowa Autism Council to investigate the creation of an Autism Specific Waiver Program. The Iowa Autism Council does not recommend the creation of a separate Autism Waiver at this time. Rather, we make specific recommendations to improve the existing Intellectual Disability (ID) and Ill & Handicapped waivers. Lastly this council recommends the Executive Branch, in partnership with this council look at utilizing alternative financing options to get programs started. Financing options such as utilization of Race to the Top Funds to implement a data collection system, if the State of Iowa is awarded such funds, or using Investing in Innovation Funds are funds that the Iowa Department of Education will be issuing through an RFP for school districts, LEAs and non-profits.
Early identification, referral, diagnosis, and intervention are critical to the promotion of lifelong positive developmental trajectories for individuals with autism spectrum disorders (ASD). Although psychometrically sound screening and diagnostic assessment measures exist and a reliable diagnosis of ASD can be made before children are two years of age, the average age of official diagnosis is well over four years. While research has shed some initial light on factors associated with delayed identification, referral, and diagnosis of ASD, all issues have been examined through population-level analyses based on retrospective caregiver self-report. Further, although suggested as an important research direction to confirm clinical information, no studies to date have analyzed factors associated with the pathway toward referral for ASD and subsequent diagnosis of ASD through examination of data reported in electronic health records. Thus, to address these limitations and develop a greater understanding of the pathway towards referral and diagnosis, the current exploratory study sought to examine clinical information from the electronic health records of all infants, children, and adolescents who were seen by a provider for an initial diagnostic visit in a specialty diagnostic clinic within a one-year period (September 12, 2019 - September 12, 2020). An array of child-related, family-related, and referring healthcare provider-related factors were examined as predictor variables to determine their association with match of referral for ASD and subsequent diagnosis of ASD, as well as to identify if there were specific factors that were consistently associated with early identification and referral of children at or under the age of three (younger than 47 months). Results indicated that 19 diagnostic (developmental, social-emotional, and medical disorders), demographic (race/ethnicity, sex, age, and geographic location), historical (caregiver-reported concerns), and professional licensure (provider practice type) factors and factor combinations predicted match of referral and diagnosis with ASD, while 35 separate diagnostic (developmental and social-emotional disorders), service provision (early and therapeutic supports), historical (caregiver-reported concerns), professional licensure (provider practice and role type), and clinical practice (screening conduction) factors and factor combinations were associated with timeliness of referral. These findings suggest important considerations for clinical practice and training, as well as highlight future research directions.