The ASERT Collaborative has several ongoing projects. Some projects start in one region and others are offered statewide. Below are a few projects and initiatives the ASERT Collaborative is working on to help address unmet needs in Pennsylvania. The ASERT Collaborative uses data from multiple sources, including the Pennsylvania Autism Needs Assessment and the Pennsylvania Autism Census, to identify project priorities.
Pennsylvania Autism Census
The 2014 Pennsylvania Autism Census Update was released in the Fall of 2014 by the PA Department of Human Services, led by the ASERT Eastern Region. The Pennsylvania Autism Census is an administrative count of the number of individuals who are receiving services in public service systems. The 2014 update used data from multiple Pennsylvania systems. The full report, previous report, and a clickable map by county are available at paautism.org/census. Pennsylvania Autism Census data can be customized and catered data requests are available. Contact ASERT@drexel.edu to request specific data or reports.
Adult Diagnostic & Assessment Clinics
This project involves developing and expanding autism diagnosis and assessment clinics specifically targeting the older adolescent/adult population. There will be a focus on more in-depth assessment of mental health co-morbidities (e.g., anxiety, depression, personality) and neuropsychological factors (e.g., executive functioning, memory, learning, attention). An increase in accurate identification of ASD for young adults and adults will lead to better treatment outcomes.
Person-Centered Assessment and Monitoring System (PCAMS)
The Bureau of Autism Services and the Central ASERT Collaborative at Penn State Hershey are currently piloting the Person Centered Assessment and Monitoring System (PCAMS) which is designed to evaluate the impact of frequent assessments of areas related to positive outcomes for adults living with ASD (e.g., community participation, social health, emotional/mental health, physical health). The overall goal of PCAMS is to validate a person-centered model of regular assessment that additionally provides indication as to the progress of participants enrolled in BAS programs. Enrollment in PCAMS should improve the care of adults with ASD by drawing attention to critical areas and factors that may be predictive of success in adults with ASD. Participants who enroll in PCAMS will be asked to complete surveys sent via email quarterly. After completion of the surveys, data will be visualized and distributed to the participant to be shared with their provider team. This data can be used to guide person-centered treatment planning and track individual progress. To participate, the individual must be 1) enrolled in Adult Community Autism Program or the Adult Autism Waiver (AAW), 2) English-speaking, 3) able to read at a 3rd grade level, 4) able to self-report on their own experiences, and 5) able to access survey links sent by email. Personnel at Central ASERT/Penn State Hershey will provide in-person/web-based trainings to all provider agencies in how to use PCAMS data to inform treatment planning and progress monitoring, as well as provide on-going support as needed. Individuals enrolled in ACAP interested in PCAMS should contact their Behavior Health Specialist (BHS) about enrolling. At this time, PCAMS is being piloted in select AAW agencies with the intention to expand statewide. Individuals enrolled in the AAW should discuss their interest with waiver personnel.
Adult and Adolescent Multimedia Social Skills
The Multimedia Social Skills Groups are two interventions which help teens (ages 13 to 17) and young adults (ages 18 to 35) who have high functioning autism improve their social conversation skills. These groups have been found to be particularly helpful for people who become highly anxious in social situations and have awareness of their challenges. These groups have two components: skills building (instruction on how to make and keep friends, dating and relationships, employment-specific social skills, and others) using video modeling and peer generalization for real world practice. Both groups are currently being disseminated in all regions. Please go to http://www.paautism.org/ASERT-Social-Skills-Groups for more information. Additional social skills interventions in development include a program for adolescents and young adults (ages 17-23) to specifically focus on the skills needed for the transition to adulthood and interventions targeting adolescents and young adults with complex communication and/or cognitive challenges. Details will be released on PAAutism.org as they become available.
Care Coordination, Assessment and Responsive Engagement for Transition Age Youth with Autism Spectrum Disorder (t-CARE)
The primary goal of the project is to develop an intervention program to help bridge care and critical skill development for individuals with ASD during the critical transition from adolescence to adulthood. The program focuses on specific transition skills, such as independent goal setting, self-monitoring, problem-solving and self-advocacy. tCARE also uses on-going multi-domain assessment and feedback to help the participants identify their personal strengths and needs. From the assessments, the tCARE coordinator guides the participants to build goals to address area of need, self-evaluate progress, and revise their interventions as needed. In addition, the program works to help the participants identify accommodations that support their needs and effectively communicate them to others. The two year program is being piloted in the Central Region for adolescents age 14-19. It requires monthly sessions with the tCARE coordinator and the participation of an Elected Reporter, an adult actively involved in the individual’s life who can provide feedback and support throughout the program.
Adult Community Autism Program (ACAP) and Adult Autism Waiver (AAW) Focus Groups
The Bureau of Autism Services (BAS) commissioned the ASERT Collaborative Eastern Region 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 dialogue among individuals who directly interact with these programs including: individuals with autism, families, service providers, and program administrators. Through this dialogue ASERT accumulated 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. Results from this second round of focus groups are in progress.
Psychosocial Rehabilitation for Adults with Autism Spectrum Disorder
Traditionally the Psychosocial Rehabilitation is a service model for individuals with severe and persistent mental illness. The goals of the service fall into five categories: Living, Learning, Socializing, Working and Self Maintenance. ASERT has begun research and development of a model of support based on the Club House that specifically meets the unique needs of adults with an Autism Spectrum Disorder. A pilot program is running in the Western region with the goal of future expansion. The ultimate goal is to identify this service as sustainable support for adults with ASD across the state.
Justice System Projects
The ASERT Collaborative Eastern and Western Regions are working on several initiatives to prevent and improve justice system interactions among individuals with autism in Pennsylvania. ASERT is training justice system professionals on autism, and providing tools and supports to help describe how autism “looks” in communities. Trainings, tools and supports are available throughout the state. Please contact the ASERT Collaborative Eastern Region (ASERT@drexel.edu) if you are interested in a training.
Education of Emergency and Pre-Hospital Responders on the Care of Patients with Autism Spectrum Disorder
The ASERT Collaborative Western Region has been collaborating with The Pennsylvania Department of Health since 2014 to provide face-to-face training to groups of Emergency Medical Technicians (EMT) and Paramedics across the Pennsylvania. A DVD and manual has been developed to provide information to EMT’s and Paramedics on ways to improve communication and safety with individuals with autism spectrum disorder in an emergency situation in the community. In addition, ASERT has collaborated with the Pennsylvania Health Service Council in providing online training in autism to this group.
ASERT has also developed a DVD and manual that will provide training and information to assist emergency room personnel in improving interactions with individuals with autism. The DVD and manual are utilized in several emergency rooms throughout the state in order to provide in service training to physicians, nurses, social workers and other emergency room staff.
ASERT has collaborated with the Pennsylvania Patient Safety Authority to continue to emphasize the importance of healthcare professionals understanding the needs of individuals with autism spectrum disorder.