Research and Evaluation Projects

• Certified 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 with Autism Spectrum Disorder (ASD) 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 Certified Peer Specialist (CAPS) pilot service for individuals with ASD over 14 years old in Philadelphia. This initiative is divided into several subsections including: Curriculum development and review, training development and review, implementation, sustainable practices, and outcome development and tracking.
• 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: 1R01MH117653-01
  • 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.

Policy and Analytics Center 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. 
• Summit on Birth to Five System Navigator for Autism and Developmental Disabilities
  • Funder: Children with Special Health Care Needs Mini Grant through the City of Philadelphia
  • Description: A Summit on Birth to Five System Navigator for Autism and Developmental Disabilities was hosted on June 30, 2018. The Summit convened stakeholders including family members and systems that serve children with autism and other developmental disabilities in the birth to five age range. The goal of the Summit was for attendees to learn and provide feedback on existing service navigator models and discuss options and opportunities for creating a system navigator role for autism and developmental disability services. For more information visit: www.paautism.org/phillyautismproject/Community/System-Navigation-Summit

The ASERT Collaborative is funded by the Bureau of Autism Services (BAS), Pennsylvania Department of Human Services. The mission of the ASERT Collaborative is to enhance the lives of Pennsylvanians with autism of all ages and abilities by:

• Improving regional access to quality services and interventions
• Providing information and support to families
• Training professionals in best practices
• Facilitating connections between individuals, families, professionals, and providers throughout the commonwealth

The ASERT Collaborative has a statewide Resource Center, available online by email (English: info@PAautism.org or Spanish: ASERTespanol@paautism.org) or by phone (877-231-4244), that connects individuals with autism, their families, and professionals to relevant information, events, trainings, and other opportunities. With a database of information, ASERT resource specialists are able to provide up-to-date and accurate information and resources. ASERT supports individuals with autism, families, professionals, and community members to learn more about services and resources available, and assist them in navigating the service system in Pennsylvania.

Please visit www.PAautism.org or follow us on Twitter @ASERT_PAautism and Facebook @ASERTPAautism to learn more about the ASERT Collaborative. Specific questions or training requests can also be emailed to info@PAautism.org.

ASERT Collaborative Ongoing Projects

• Outreach and Training: The ASERT Collaborative offers free tailored trainings and presentations for individuals with autism, families, professionals, and community members on a variety of topics including autism and the justice system, introduction to autism, and Medicaid-funded programs for children and adults with autism.
• Resource Development: The outreach and resource services available through ASERT connect existing resources and pockets of expertise, and help address regional gaps in effective services and supports. The ASERT Collaborative has created a library of resources in a variety of topics that are available on the ASERT website (paautism.org). Topics include: transportation, justice, safety, physical health, mental health, and more.
• Statewide Resource Center and Website: Through the toll-free number, individuals, professionals, families and community members can contact the ASERT Resource Center and get connected with a Resource Specialist who can provide access to available resources by region and statewide. To contact a Resource Specialist, call 877-231-4244 or email info@paautism.org.  The website is a central resource for families, providers, community members, and self-advocates, and allows you to access a broad array of information to help meet the needs of those living with or serving people with autism via the Internet. The website is an integral part of ASERT’s effort to broaden outreach to individuals with and affected by autism. The website hosts an online resource database and is continually updated with news, events, and trainings.
• Data Analysis: The Pennsylvania Autism Census and Pennsylvania Autism Needs Assessment data can be customized and catered data requests are available. Contact info@paautism.org to request specific data or reports.
• Functional Behavior Assessment (FBA) Module Training Series: All Behavioral Health-Managed Care Organizations and providers enrolled in the Medical Assistance (MA) Program who provide behavioral health rehabilitation services (BHRS) to children under age 21 must obtain training and certification from Office of Mental Health and Substance Abuses Services (OMHSAS). This includes the Bureau of Autism Services: Office of Developmental Program (BAS: ODP) Functional Behavior Assessment (FBA) Training. The ASERT Collaborative, in collaboration with BAS: ODP, is developing web-based FBA training modules that will build capacity, reach a larger audience, ensure content comprehension and retention of training material, and ensure a level of competency verify ability of the practitioner  after training, and measure practitioners’ ability to maintain fidelity & track effectiveness of the training itself.
• The Pennsylvania Autism Needs Assessment: The 2017 Pennsylvania Autism Needs Assessment is a follow up to the 2011 Pennsylvania Autism Needs Assessment.  The information collected will help stakeholders across Pennsylvania to better understand and work to address the changing needs of individuals impacted by autism. The Pennsylvania Autism Needs Assessment seeks to understand the needs of people with autism and their families as this population continues to grow and change. A website that will house results, reports, and other data analysis and information learned from the 2017 Pennsylvania Autism Needs Assessment is in progress.

Select Publications:

• Turcotte, P., Shea, L.L. & Mandell, D. J (2018).  School Discipline, Hospitalization, and Police Contact Overlap Among Individuals with Autism Spectrum Disorder. Journal of Autism and Developmental Disorders 48: 883.
• Turcotte, P., Mathew, M., Shea, L. L., Brusilovskiy, E., & Nonnemacher, S. L. (2016). Service Needs Across the Lifespan for Individuals with Autism. Journal of Autism and Developmental Disorders, 46(7):2480-9.

ASERT Collaborative Completed Projects

• Pennsylvania Autism Census: In 2005, the Bureau of Autism Services within the PA Department of Human Services commissioned an administrative census of the number of individuals with autism receiving services in Pennsylvania. The 2014 Pennsylvania Autism Census Update was released in fall 2014 by the PA Department of Human Services, led by the ASERT Collaborative. The Pennsylvania Autism Census is an administrative count of the number of individuals who are receiving services in public service systems. The 2014 PA Autism Census Update used data from multiple Pennsylvania systems. The full report, previous report, and a clickable map by county are available at www.paautism.org/census.
• Adult Community Autism Program (ACAP) and Adult Autism Waiver (AAW) Focus Groups: The Bureau of Autism Services (BAS) commissioned the ASERT Collaborative to conduct a series of focus groups in 2013-2014 to engage the two current BAS programs: the Adult Autism Waiver (AAW) and the Adult Community Autism Program (ACAP). ASERT facilitated focus groups with individuals who directly interact with these programs including: individuals with autism, families, service providers, and program administrators. Through these focus groups ASERT gathered detailed knowledge about their experiences with AAW and ACAP. The results of this project informed program planning and helped to bridge program engagement with BAS, ASERT and service providers. Results of this initiative were communicated to individuals and families through community meetings and a formal report. In late 2015, ASERT conducted a second round of ACAP focus groups to learn if and how program experiences have changed since the first focus groups.

Select Publications:

• Koffer Miller, K.H., Mathew, M., Nonnemacher, S., & Shea, L.L. (2018). Program experiences of adults with autism, their families, and providers: Findings from a focus group study. Autism 22(3). 345-356.

• State Policy Summit: Innovations in Adult Programming: The inaugural Policy Summit: Innovations in Adult Programming, sponsored by the Autism Services, Education, Resources, and Training Collaborative (ASERT) was held in Philadelphia in March 2016. The Policy Summit brought together experts from across the United States who specialize in programs and policy development and implementation for adults with autism spectrum disorder, intellectual disability, other developmental disabilities, and mental health diagnoses. The purpose of the Policy Summit was to bring these experts and policy leaders together to discuss ways to address pressing issues faced by policy and decision-makers and to generate new ideas in Pennsylvania and Philadelphia based on the experiences of experts from around the country. For more information visit: http://www.paautism.org/training-events/Summit.

 

The Philadelphia Autism Project is a citywide initiative established by the office of former Councilman-At-Large Dennis M. O'Brien and continues to be supported through the office of Councilman-At-Large Derek S. Green. The Philadelphia Autism Project is conducted in partnership with the Department of Behavioral Health and Intellectual disAbility Services (DBHIDS). The goal of the Philadelphia Autism Project is to examine the services and supports for individuals and families who are living with Autism Spectrum Disorder (ASD) in Philadelphia. This effort represents the first of its kind at the municipal level and is working in conjunction with the ASERT Collaborative. The project delivered a wide-ranging final report to identify the most effective, efficient, and comprehensive system of care for individuals with ASD and their families living in Philadelphia. Please visit www.phillyautismproject.org or follow us on Twitter @PhillyAutism and Facebook @PhillyAutism to learn more about the Philadelphia Autism Project initiatives. Specific questions or training requests can also be emailed to PhillyAP@drexel.edu. 

The Philadelphia Autism Project supports individuals with autism and their families living in Philadelphia through:

• Community engagement and outreach through our Calendar of Events
• Free tailored trainings
• Seed funding to reach underserved populations
• An annual conference bringing people and ideas together
• Centralized resource hubs in person and online
• Collaboration with stakeholders to work on Philadelphia Autism Project initiatives

Completed Projects:

Cooking with Confidence

• Funder: Drexel University Expressive and Creative Interaction Technologies (ExCITe) Center
• Description: Cooking with Confidence was a free cooking program for individuals with autism presented by the Free Library of Philadelphia’s Culinary Literary Center and the Philadelphia Autism Project with funding support from the Drexel University ExCITe Center. In three hands-on classes, participants learned basic cooking skills, including how to follow a recipe and how to stay safe in the kitchen. To learn more visit: https://www.philly.com/philly/food/learning-how-to-cook-with-autism-spectrum-disorder-cooking-with-confidence-at-free-library-of-philadelphia-20181031.html

Although the last two decades have seen an increase in awareness and the prevalence of autism spectrum disorder, policy and practice to meet the needs of this group have not consistently kept pace. To combat part of this problem, the International Society for Autism Research (INSAR) has awarded a competitive grant to local leaders who are working to improve interactions between autistic individuals and the justice system.

The award will fund a two-day conference in Summer 2020 that will be led by Lindsay Shea, DrPH, director of the Policy and Analytics Center at the A.J. Drexel Autism Institute and Cpl. John Burke, an instructor at the Philadelphia Police Department Training and Education Services Bureau and brings together an group of international experts:

• Alexandra Slaughter, MA, University of Houston
• Amy Blank Wilson, PhD, University of North Carolina
• Aubyn Stahmer, University of California, Davis
• Catherine Cheely Bradley, PhD, Medical University of South Carolina
• Chloe Holloway, PhD, University of Nottingham
• Connie Hassett-Walker, PhD, Kean University
• David Mandell, ScD, University of Pennsylvania
• Dennis O’Brien, Community Behavior Health
• Derek S. Green, JD, Philadelphia City Councilmember-At-Large
• Emily Zimmerman, JD Thomas R. Kline School of Law, Drexel University
• Frank Iannuzzi, JD, Office of Philadelphia City Councilmember-At-Large Derek S. Green
• Icylee Basketbill, Philadelphia Autism Project
• Juan Bornman, PhD, University of Pretoria
• Kate Hooven, MS, Autism Services, Education, Resources and Training (ASERT) Collaborative
• Katie Maras, PhD, University of Bath
• Khylil Robinson, ASDNext
• Laura Crane, PhD, University College London
• Mark Salzer, PhD, Temple University
• Matthew Lerner, PhD, Stony Brook University
• Melanie Clark Mogavero, PhD, Georgian Court University
• Michael Gamel-McCormick,PhD Office of U.S. Senator Robert P. Casey
• Michele Abraham-Montgomery,Spectrum Success 911
• Nina Wall, MSS, Pennsylvania Bureau of Supports for Autism & Special Populations
• Robert Schmus, MSW, Youth Consultation Service
• Roslyn Talley, Philadelphia Police Department
• Sarah Mire, PhD, University of Houston
• Shane Carey, Chambers of Justice Kevin M. Dougherty
• Stacy Nonnemacher , PhD, Pennsylvania Bureau of Supports for Autism & Special Populations
• Stephen Shore, EdD, Adelphi University
• Vicki Gibbs, Autism Spectrum Australia

Please check back for more information and resources!

Resources:

• Sequential Intercept Model

• Lindsay Shea, DrPH, MS
• Katie Croce, EDD, BCBA-D
• Dylan Cooper, MSEd
• Kailtin Koffer Miller, MPH
• Chisa Merriweather
• Kathleen Shea, MS
• Paul Turcotte, MPH
• Disha Uppal
• Kate Verstreate,MPH
• Mimi Wong, MSW