Using Community-Based Participatory Research Methods to Gain Access to Post-Secondary Education for Youth with Intellectual Disabilities

Background and Purpose: Youth with Intellectual Disabilities (ID) have an array of interests and abilities. North Carolina has led the nation in creating five post-secondary education (PSE) models for youth with ID. Research indicates youth with ID who participate in PSE earn 73% higher wages. Recently, a grassroots movement began in Pennsylvania to make the dream of college a reality for students with ID. Thus, the following research was commissioned with objectives to document interest and understand concerns of youth with ID and their parents for PSE options.

Methods: Using community based participatory research methods from start to finish, the project utilized a mixed-methods design driven by a steering committee comprised of parents from a grassroots organization, youth with ID, and leaders representing three county agencies. A flyer was created by the steering committee and sent to 383 individuals with ID receiving county case management services between the ages of 14 -21. IRB approval was granted. The steering committee created focus group questions. Seven focus groups with 35 people were held. Youth with ID and parents/support staff participated in separate, but simultaneous focus groups. Following transcription and focus group analysis, a structured self-administered survey was then created and mailed to parents/guardians and a separate, interview questionnaire was administered face-to-face to randomly selected youth who had not participated in focus groups. 

Findings: Content analysis of parental focus groups resulted in four themes: transportation, social and academic supports, university housing, and curriculum considerations. Findings from the youth focus groups yielded three themes: academic support, adjusting to college life, and bullying. The returned parent survey (20%) indicated the majority of their children with ID had interest in post-secondary education (60%); a determining factor for attending college would be transportation (57%); and that their child would benefit from safety awareness programs (82%). Also, parents want curriculum that builds vocational skills (91%) that lead to competitive employment.

Face-to-face interviews of youth with ID yielded a strong interest in working while attending college (86%) and/or joining a campus club (71%). These youth are social and look forward to forming new relationships (100%) in spite of anxiety about doing so (43%). In terms of daily living skills, the youth were most confident in their ability to manage their time, doing laundry, and cooking (57%). Whereas, only 14% believed they were capable of managing their money. In terms of safety, the majority thought they would be safe at college, but 29% believed they would be bullied. 

Conclusion and Implications: Promoting human rights are the roots of social work. This research was utilized by the steering committee in advocating effectively before the Commonwealth legislature to promote the development of specialized, Pennsylvania PSE models. Additionally, it was used in making successful grant applications to private foundations. Social workers are involved in coordinating higher education disabilities and academic support programs, thereby understanding the strengths and needs of students with ID is critical to this expanding field. Moreover, earning higher wages decreases financial exploitation of this historically, oppressed population.