Updated: Feb 3, 2018
February 1, 2018, ST. LOUIS, MO - LIFEbinder LLC is pleased to announce its research partnership with George Mason University (GMU) in Fairfax, Virginia to conduct online and in-person surveying to inform the development of its pilot product, PATHbinder™.
Participant recruitment for the PATHbinder™ Research Project begins in February 2018, when the Project invites participation from clients of select organizations serving youth and adults with autism in Missouri and Virginia, and engaging families and professionals supporting autistic youth through networking and social media.
Research participation includes a brief online survey through GMU, to ensure security and HIPAA compliance for information shared by participants. While data entered through the GMU system is collected anonymously, contributors are welcome to expand their research participation through interviews and product beta-testing.
LIFEbinder LLC and GMU are seeking survey participants from across the spectrum including young adults (age 18+) with autistic spectrum disorder (ASD) and developmental disabilities (DD), parents and caregivers of youth with ASD/DD, secondary and post-secondary educators (grades 7-12, college), and social service and medical care providers for people with ASD/DD.
Data collected through the Research Project will inform the development of PATHbinder™, a personal management system including portable document storage and supported web platform for parents, teachers, and paraprofessionals to transfer information and promote independent living skills development in teens and young adults with autism and other developmental disabilities.
"Our team is excited to learn from other families and professionals," said Vicki Kahn, Founder and CEO of LIFEbinder LLC. "My family is just one of the 3.5 million in the U.S. supporting a loved one with autism. Our research partnership with George Mason University sets a place at the table for families to share their experiences and concerns and help us build tools that work for them - because every person has the right to self-determine their own path and build a life they love."
PATHbinder™'s integrated management system is designed to complement Supported Decision-Making agreements, a growing alternative to guardianship for young adults with disabilities. PATHbinder™ aims to help autistic youth learn to organize and manage their daily living and multi-member support teams, in preparation for independent life after high school.
The Project will be led by Vicki Kahn, of LIFEbinder LLC, and Principal Investigator (PI) Dr. Grace Francis, PhD, Assistant Professor of Special Education at the Helen A. Kellar Institute for Human disAbilities at GMU (pictured, right). Dr. Francis brings 15+ years of experience in education and research on disability, including numerous peer-reviewed publications on post-secondary transition, employment, and family supports for people with autism and developmental disabilities.
All personally-identifying information provided by participants in the PATHbinder™ Research Project (names, email addresses, diagnoses, etc.) will be stored securely, held in strictest confidence, and will not be shared with or sold to third parties.