Research for Real World Problems The Policy and Analytics Center has several local, national, and internationally funded initiatives dedicated to the intersection of advancement analytic methodology and identification of real life solutions and implications that impact individuals, families, policymakers, and communities. Ongoing Projects Autism and the Criminal Justice System For more information about PAC initiatives related to autism and the justice system click here Select Publications: Shea, L. L., Cooper, D., & Wilson, A. B. (2021). Preventing and improving interactions between autistic individuals and the criminal justice system: A roadmap for research. Autism Research, 14(10), 2053-2060. Cooper, D. S., Uppal, D., Railey, K. S., Blank Wilson, A., Maras, K., Zimmerman, E., ... & Shea, L. L. (2021). Policy gaps and opportunities: A systematic review of autism spectrum disorder and criminal justice intersections. Autism, 13623613211070341 Community Autism Peer Specialist (CAPS) Project Principal Investigator: Lindsay Shea, DrPH Funder: Community Behavioral Health (CBH) through the Philadelphia Department of Behavioral Health and Intellectual disAbility Services (DBHIDS) and the Urban Health Collaborative (UHC) Description: Young adults and adults on the Spectrum are largely underserved and disconnected from resources that would contribute to higher rates of life satisfaction and personal wellness. To address this need, the Policy and Analytics Center is collaborating with Community Behavioral Health (CBH) through the Philadelphia Department of Behavioral Health and Intellectual disAbility Services (DBHIDS) to create a Community Autism Peer Specialist (CAPS) pilot service for individuals on the Spectrum, aged 14 and over, residing in Philadelphia. This initiative has several components including: curriculum development, training development and implementation, service implementation and sustainability, and outcome development and tracking. Advancing the System of Care for Autistic Older Adults Principal Investigator: Lindsay Shea, DrPH Funder: National Institute of Mental Health of the National Institutes of Health Parent Fund Number: 1P50HD111142-01 Description: This study aims to conduct the most comprehensive examination to date of autistic adults (aged 40+) as they age, with the goal of gaining a comprehensive national picture of health and mental health outcomes and service needs. As the largest healthcare insurers in the US, Medicaid and Medicare are critical sources of care for autistic adults as they age, and claims data provide a vital window for observing the prevalence and emergence of conditions, including specific neurological conditions associated with aging, and studying potentially adverse effects on health and mental health outcomes and service use. We will link national Medicaid and Medicare data, data about mortality, and data about communities for autistic individuals ages 40 through the end of life, and a comparison group of adults without autism. This research will generate findings that are poised to identify and inform modifiable components of service delivery through these national insurers, with potential for broad impact on the health of the autistic community. The Effectiveness of an Autistic-Delivered Peer-Support Intervention for Autistic Adults: Community Autism Peer Specialist (CAPS) Program Principal Investigator: Lindsay Shea, DrPH Funder: National Institute of Mental Health of the National Institutes of Health Grant Number: 1R34MH130830-01 Description: Approximately 5.4 million adults in the United States (1 in 45) are believed to have autism spectrum disorder (ASD), but there is a lack of services available to support them in reaching their full potential. Peer- delivered interventions have emerged as a potent, evidence-based modality for enhancing outcomes among other clinical populations, such as adults with serious mental illnesses, with effectiveness in enhancing social networks, empowering participants, reducing the use of inpatient services, and increasing life satisfaction. At present, there is limited research on the effectiveness of autistic-led peer support interventions, especially those that target broad aspects of community functioning. The proposed study seeks to refine, manualize, and test a pilot autistic peer support program aimed at supporting community participation among autistic young adults, with the goal of preparing it for large-scale testing and future dissemination and sustainability. The purpose of this study is to enhance the structure of a pilot autistic-peer delivered intervention (Community Autism Peer Specialists, or CAPS) that is currently in use as a Medicaid-reimbursed service in Philadelphia. Alternative Approaches to Supporting ASD Services for Young Adults Alternative Approaches to Supporting ASD Services for Young Adults Principal Investigator: Lindsay Shea, DrPH Funder: National Institute of Mental Health of the National Institutes of Health Grant Number: 1R01MH117653 Description: Given the recent increased number of adolescents diagnosed with autism spectrum disorder (ASD), the lifelong presentation of ASD, and the under-researched changes in the needs of adolescents with ASD as they age, examining healthcare access and service use among adolescents with ASD as they transition into adulthood is critical to developing an efficient and effective system of care. Alternative Approaches to Supporting ASD Services for Young Adults examines the eligibility for healthcare coverage and healthcare service use in the Medicaid system among adolescents with ASD they age into adulthood by: studying the effects of state Medicaid policies and programs on adolescents with ASD to remain eligible for Medicaid as compared to their counterparts with intellectual disability (ID); studying types and quantities of Medicaid-funded services used by adolescents with ASD as compared to adolescents with ID; and by interviewing states to understand state-specific factors that may impact eligibility or service use for adolescents with ASD as they transition to adulthood. Select Publications: Shea, L. L., Field, R., Xie, M., Marcus, S., Newschaffer, C., & Mandell, D. (2019). Transition-Age Medicaid Coverage for Adolescents With Autism and Adolescents With Intellectual Disability. American journal on intellectual and developmental disabilities, 124(2), 174-185. Shea, L. L., Xie, M., Turcotte, P., Marcus, S., Field, R., Newschaffer, C., & Mandell, D. (2018). Brief Report: Service use and associated expenditures among adolescents with autism spectrum disorder transitioning to adulthood. Journal of autism and developmental disorders, 48(9), 3223-3227. Schott, W., Verstreate, K., Tao, S., & Shea, L. (2021). Autism Grows Up: Medicaid’s Role in Serving Adults on the Spectrum. Psychiatric Services, 72(5), 597-597. Shea, L. L., Koffer Miller, K. H., Verstreate, K., Tao, S., & Mandell, D. (2021). States' use of Medicaid to needs of autistic individuals. Health Services Research. Schott, W., Tao, S., & Shea, L. (2021). COVID-19 risk: Adult Medicaid beneficiaries with autism, intellectual disability, and mental health conditions. Autism. https://doi.org/10.1177/13623613211039662 Identifying Co-Occurrence and Service Use Profiles of Alzheimer's Disease and Autism Spectrum Disorder Principal Investigator: Lindsay Shea, DrPH Funder: National Institute of Mental Health of the National Institutes of Health Grant Number: R01MH117653-03S1 Description: This administrative supplement to the parent R01 (Alternative Approaches to Supporting ASD Services for Young Adults) is the first national study of the prevalence, incidence, and healthcare service use of individuals with autism spectrum disorder (ASD) and Alzheimer’s disease and related dementias (ADRD). Select Publications: Vivanti, G., Tao, S., Lyall, K., Robins, D. L., & Shea, L. L. (2021). The prevalence and incidence of early‐onset dementia among adults with autism spectrum disorder. Autism Research. Community Participation, Service Needs, and Health Outcomes Among Adults with Autism Principal Investigator: Lindsay Shea, DrPH Funder: Department of Defense Grant Number: W81XWH-20-1-0435 Description: This research study is on a large group of adults with autism spectrum disorder (ASD) and generate comprehensive data on their community participation preferences and experiences, with the goal of improving how services that support community engagement are designed and delivered. Meaningful participation in the community is a core component of living a healthy life. Studies show that it is connected to increased feelings of well-being, improved quality of life, and better self-reported health, as well as decreased feelings of social isolation and reduced feelings of depression and anxiety. People with ASD may experience unique barriers to community participation due to social and communication differences as well as logistical barriers such as transportation. To date, very little research has gathered information directly from adults with ASD about their experiences or service use; as a result, we lack information to ensure that policies, systems, and programs are best set up to meet their needs. A single group longitudinal design will follow adults on the autism spectrum who participated in the 2018 Pennsylvania Autism Needs Assessment (reporting community participation experiences and preferences, demographic and clinical information) and who consented to future research contact. Survey data will be linked to Medicaid and administrative claims. Select Publications: Shea, L. L., Becker, A., Lee, B. K., Koffer Miller, K., Cooper, D., Anderson, K., Salzer, M.S. & Vanness, D. J. (2022). Self-reported COVID-19 vaccination acceptance and hesitancy among autistic adults. Vaccine. Autism Transitions Research Project (ATRP) Principal Investigator: Lindsay Shea, DrPH Funder: Health Resources and Services Administration (HRSA) Grant Number: UJ2MC31073 Description: This research is a programmatic series of studies addressing research gaps related to transition-age youth on the autism spectrum (12-25 years). ATRP is a collaborative project between PAC and the Life Course Outcomes Research Program. Our studies include a mix of quantitative and qualitative methodologies including secondary analysis of large national datasets, interviews with youth on the autism spectrum and family members, and social network data collection and analysis. Secondary data analysis involves large administrative datasets such as Vocational Rehabilitation, Developmental Disability Services, and special education data. Primary data collection focuses on two pilot studies – one of which is Transition Odyssey. Transition Odyssey: Seeks to develop and test a protocol for a structured, economical approach to gathering useful data about the timing, sequencing and coordination of events related to accessing services during the transition process. Focuses on disadvantaged families. We are nearing completion of testing the parent protocol and are designing a youth protocol which we will launch this fall. Includes surveys and qualitative data collection/analysis. Autism Intervention Research Network on Physical Health (AIR-P) Health Systems and Services Node Leader: Lindsay Shea, DrPH Funder: Health Resources and Services Administration (HRSA) Grant Number: UA3 MC11054 Description: The purpose of the AIR-P is to support innovative life course intervention research that promotes optimal health and well-being of autistic individuals across the lifespan. It is a multicenter research network that brings together researchers from many disciplines and backgrounds. AIR-P is made up of several different topical nodes, one of which is led by Lindsay Shea and Paul Shattuck (Mathematica). Our node examines anything related to health systems and services. Much of the work uses national sources of secondary data related to health or health services. AIR-P is a collaborative project between PAC and the Life Course Outcomes Research Program. For more information visit: https://airpnetwork.ucla.edu/health-systems-and-services/ Completed Projects Philadelphia Autism Centers of Excellence Evaluation: Principal Investigator: Lindsay Shea, DrPH Funder: Community Behavioral Health (CBH) through the Philadelphia Department of Behavioral Health and Intellectual disAbility Services (DBHIDS) Description: The goal of this project was to examine the effectiveness and impact of the Philadelphia Autism Centers for Excellence across multiple domains. This publicly-funded evaluation helped Community Behavioral Health (CBH) through the Philadelphia Department of Behavioral Health and Intellectual disAbility Services (DBHIDS) to learn more about the experiences of individuals receiving autism services from local agencies that have been designated as Philadelphia Autism Centers of Excellence by using: analysis of Medicaid claims and encounter data, surveys of family members of individuals receiving services through the Philadelphia Autism Centers for Excellence, focus groups with the Philadelphia Autism Centers for Excellence staff and family members, targeted individual interviews, and chart audits. Agencies include Special People in Northeast (SPIN), the NorthEast Treatment Center (NET), and Child Guidance Resource Center (CGRC). The results of the evaluation provided guidance and concrete recommendations to improve the service experiences of individuals with autism and their families in the City of Philadelphia.
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