Evaluating a Postsecondary Education Program for Students with Intellectual Disabilities: Leveraging the Parent Perspective

PSE programs generally collect evaluative data across several key areas including staffing, administration, student planning, student activities, employment opportunities, self-determination, and interagency collaboration. Programs may also receive feedback from the perspectives of program staff, mentors, students (enrolled and graduated), instructors, employers, and parents. Capturing parental perspectives is a crucial component of PSE program evaluations, as parents play an integral role in decision making in terms of enrolling students with ID into a PSE program, and helping students navigate through the transition stage (Culnane et al. 2016; Jones and Goble 2012).

Surprisingly, however, there is a lack of research exploring parent perspectives of a TPSID program (Sheen 2017; Yarbrough et al. 2014). In general, studies that have included parents (or families) have focused on understanding the transition of individuals with cognitive disabilities into adulthood after leaving high school (Chambers et al. 2004), or the issues families face in learning about or choosing PSE programs (Griffin et al. 2010). Research focusing on parental perspectives of PSE programs has, so far, identified what skills parents believe are important for their child to acquire during a PSE program (Sheen 2017), and program components as being most beneficial to their child with ID (Yarbrough et al. 2014). A recent study by Miller, Schleien, White, and Harrington (2018), explored desired and perceived outcomes of parents of students with intellectual and developmental disabilities (IDD) who participated in a PSE program. Findings from this study revealed that according to parents, students with IDD gained skills in several key areas including, socialization and communication, personal care, use of technology and public transportation, handling of personal affairs, and financial management.

Research has found that parental involvement is a key predictor of successful outcomes during the transition period for young adults with ID (Foley et al. 2012). Parents often find the transition period difficult, and in particular, have a hard time allowing their students to become independent in a college environment (Miller et al. 2018). By integrating parental feedback in continual program enhancements, parents will continue to see value in PSE opportunities, which will result in improved outcomes not only for their currently enrolled student but also for students who enroll in the future.

To fill this gap in the literature, the present study will address Sheen’s (2017) call for additional research by conducting a qualitative analysis of the parental experience with a TPSID-funded institution. This is particularly important, as most TPSIDs act as a model program for other PSE institutions. Using an established theoretical model to understand changes in behavior (Michie et al. 2011) and to extend prior research, feedback was gathered regarding 1) changes parents noticed in their student with ID during enrollment in a TPSID funded program, and 2) feedback related to the program overall, including an understanding of what areas of the program were helpful and which areas needed further improvement.

Transition-aged (18–24 years old) adults with ID who apply and meet basic enrollment criteria for a TPSID-funded PSE program (nested within a large public university in South Florida) are subsequently assessed by the program psychologist as part of the admissions process. This evaluation consists of clinical interviews and a battery of assessments related to social, behavioral, and intelligence domains. Results from these assessments inform the student’s eligibility for enrollment into the program.

At orientation, parents and students are informed about ongoing data collection efforts, including an opportunity for parents to participate in an interview to provide feedback (referred to as family debriefings) at the end of the fall and spring semesters. Parents are recruited through flyers, emails, and phone calls which emphasize the voluntary nature of the data collection effort.

This study presents findings of data collected over two academic years, as family debriefings were conducted in fall 2017 (n = 12), spring 2018 (n = 10), fall 2018 (n = 22), and spring 2019 (n = 14). All parents whose child was enrolled in the program during the respective semesters were invited to participate. As such, some parents participated in more than one interview: four parents participated three times, seven parents participated twice, while all other parents participated only once over the two years. Approval from the university’s Institutional Review Board and consent forms from all parents was obtained before conducting any interviews.

Demographic data indicate that most parents who participated in the interview and shared demographic details with program staff held a high school diploma or equivalent (38%), followed by a bachelor’s degree (22%) and an associate’s degree (14%). Parents also reported having attended some college but not having a degree (10%), having a master’s degree (6%), and other levels of education (10%). The median family income was reported at $50,000 per year. The average age of the students whose parents participated in this study was 20.8 years old, and the majority were male (81%). Almost 62% of students identified themselves as Hispanic or Latino, and white (77%). In addition to an intellectual disability, just over a third of students also reported having an autism spectrum disorder (31%), and others reported having multiple disabilities (8%), speech/language impairments (27%), and other disabilities (34%). The pre-PSE program experience of most students included taking only special education classes in high school (52%), and spending most of their time in special education classes (32%), fully inclusive classes with no special education (2%), or other inclusive classes (2%).

Parents who agreed to participate in the family debriefings were scheduled for one-hour structured interviews, which were conducted in-person or over-the-phone, based on the parent’s preference. In-person interviews were conducted in a private room on-campus, while over-the-phone sessions were conducted using a private conference line. Program staff were responsible for all logistics involved with contacting the parents, reserving rooms on campus, and establishing conference lines. A structured interview guide comprising 22 questions and probes designed by the PSE program was used to ensure that all program components were addressed at each interview. This study covers two academic years over which time this interview guide was piloted for the evaluation of the program. It was necessary to pilot test the instrument over the four semesters, to determine if the interview guide was able to capture changes over time among parents who participated more than once. Interviewers read out the questions and relevant probes verbatim, and parent responses were captured using detailed notes made by the interviewer. In some instances, where parents were not fluent in English, professional translators were scheduled in advance to assist with the interview session. Interviewers were master- and doctoral-level graduate research assistants (majoring in social work, public health, or psychology at the university) who worked on the PSE programs evaluation team. In any given semester, between three to six interviewers were involved. All interviewers were provided the same training on conducting interviews and collecting data, and were knowledgeable about ID, aware of challenges associated with the transition from high school to a PSE environment, and had limited contact with parents and students beyond the biannual program data collection efforts, thereby minimizing bias and enhancing rigor.

Qualitative studies that leverage established theories and models allow mechanisms underlying the findings to be more meaningfully understood (Meyer and Ward 2014). In this study, the COM-B change model developed by Michie et al. (2011) was used to guide our evaluation of the PSE program from the parent’s perspective. To the best of our knowledge, only two other studies have applied the COM-B model to the population of individuals with IDD (Alexander et al. 2014; Bossink et al. 2019) and no studies have utilized this model among parents of this population.

The COM-B model was developed to evaluate interventions using a “behavior system,” in which three conditions (capability, opportunity, and motivation) all interact to generate behaviors. Michie et al. (2011) define capability as “the individual's psychological and physical capacity to engage in the activity concerned”, opportunity as “all the factors that lie outside the individual that make the behavior possible or prompt it” and motivation as “all those brain processes that energize and direct behavior” (p. 4). Within the COM-B are further sub-constructs, which are defined and presented in the results section. By using the COM-B model, the present study comprehensively examined mechanisms in the environment, which contributed to changes in student behaviors related to academic, employment, and independent living as perceived by parents.

Data were analyzed using thematic analysis, which is a method used “for identifying, analyzing and reporting patterns (themes) within data” (Braun and Clarke 2006, p. 6). Specifically, interview data were analyzed using a deductive approach whereby the coding and theme development were guided by the COM-B model. Two authors read and reviewed all anonymized data collected from the structured interviews. Line-by-line coding was then conducted independently by author A using NVivo 12 software, by 'splitting' the text into smaller pieces (Saldana 2011) and assigning lines of code to the main constructs established by the COM-B model. This technique is commonly used in the health science fields when using a deductive methodology (Crabtree and Miller 1992). Author A subsequently created a tentative framework that involved analyzing each code individually to identify unique sub-constructs, such as physical opportunity and social opportunity. The sub-constructs helped pull smaller amounts of data together into more meaningful units which allowed for the development of themes (Creswell 2013).

Author B then independently coded the data using this framework, and both authors met to discuss any discrepancies until consensus was reached. To ensure the validity of data analysis and findings, this discussion involved a thorough review of themes and sub-constructs. Specifically, the authors examined each code and confirmed that they all fit under each theme and sub-construct. In addition, authors ensured that each construct accurately reflected the overall meaning of the data. A final framework was developed, which allowed author C, also familiar with qualitative methodology, to review coding decisions and provide input. By triangulating among three authors and efforts made to bracket out personal biases and experiences during coding (Creswell 2013) internal validity of the study findings was enhanced. Moreover, saturation of findings was evident with themes being repeated over the four periods of data collection. Please see Table 1 for an overview of the COM-B constructs, sub-constructs, and emergent themes.

Michie et al. (2011) distinguish between psychological and physical capability. Psychological capability refers to the ability to engage in mental processes (i.e., comprehension and reasoning), while physical capability involves having a suitable environment to promote behaviors. In the present study, capability was defined as all programmatic activities and components offered specifically to students with ID enrolled in the PSE program, which contributed to observed behaviors. Distinct themes emerged from the data that aligned with two sub-constructs identified in the COM-B model: 1) psychological and physical enablement and 2) psychological and physical training and education.

In the COM-B model, opportunity is defined as external factors that influence behavior. Michie et al. (2011) distinguished between physical opportunity (i.e., the environment), and social opportunity (i.e., culture). In the present study, distinct themes emerged related to the construct of opportunity, which fit with the sub-constructs: 1) parent physical and social enablement and 2) campus and community physical enablement.

Within the COM-B model, motivation refers to the processes in the brain which direct behavior, beyond conscious decision making, which includes reflective motivation (i.e., the processes which involve evaluations and plans) and automatic processes (i.e., emotions and impulses; Michie et al. 2011). Distinct themes emerged from the data aligning with the following three sub-constructs: 1) reflective education, 2) automatic enablement, and 3) automatic modeling, which all relate to a student’s motivation that ultimately impacts their behavior.

Using the COM-B model, this study examined what behaviors students were engaging in, because of improved capability, opportunity, and motivation. Three themes emerged which align with programmatic goals of increasing student 1) employment and academic achievement, 2) independent living growth, and 3) socialization, communication, and overall development.

Although parents suggested some areas for improvement within the program (mentioned previously), parents appeared to value and perceive the PSE program positively overall. Many parents shared sentiments similar to one parent who stated that “Everything has worked out so well and I have seen so many benefits already. I see all of the students succeeding – they are happy in the college environment and are proud of themselves.” Another parent shared “I [parent] always thought he [student] would be very dependent on me. He will always need some type of supervision, but now I feel he would be more prepared to take care of himself if anything happened to us” with one other parent stating “Everything is going perfectly. I thought it would take at least one year for avenues to open up for the future, but the program is already offering him the right path.”

Across the two years of data collection, parents’ observations and feedback allowed an insight into areas of growth related to skills and abilities. Based on consistent parent reports, it was evident that students with ID improved in several important areas relating to academics, independent living, and employment, among others. For example, students showed increased reading and writing ability and relied less on their parents for help completing homework. However, most parents reported that math and money management were persistent challenge areas among students with ID. Parents did report increases in levels of independence, so much so that some were more comfortable leaving their child home alone. Students also demonstrated growth in skills related to cooking, cleaning, personal care, time management, and using public transportation. These findings are consistent with prior research where parents also reported increased use of public transportation and the ability to manage personal care (Miller et al. 2018).

Most students were also more open to broader employment options, were more aware of appropriate self-presentation for different occasions, and improved their verbal and interview skills. These are all significant areas of growth related to employment success. Students also improved in communication and socialization skills as a result of being immersed in the college environment and interacting with both peers with ID and neurotypical students. Finally, parents reported that students demonstrated overwhelming growth in maturity, confidence, responsibility, and self-advocacy—all crucial areas of personal development that support the life trajectory of a student with ID.

Participation in the residential program, independent living workshops, inclusive academic classes, and having access to academic and faculty mentors and supportive program staff were all commonly referenced by parents as being valuable and effective in helping their child grow. Similar to findings from previous studies, employment experiences offered through job shadowing and internships (Griffin et al. 2010) and the opportunity to participate in large campus and engage as a typical student would (Yarbrough et al. 2014), were stressed upon as being valuable and essential for student growth. Interestingly, the child’s safety on campus was noted as one of the most important factors in considering PSE options in the study by Griffin et al. (2010). However, in this study, only a few parents expressed concern for safety concerning cooking, and only one parent shared safety concerns related to participation in the residential program. The limited mention related to campus safety may be a reflection of the parents' confidence in the program staff to provide a safe campus environment for the students.

Having access to resources such as an iPad was useful in helping the student’s complete coursework, and public speaking classes were commonly cited as being beneficial in increasing communication skills. External experiences such as engaging in Special Olympics were also regarded as influential predictors of independence among students with ID. Parents also shared that the STAR PCP meeting and having visual goals were beneficial in helping students stay on track throughout the program.

Although many parents were satisfied with the PSE program, some desired greater variety in academic coursework and internship opportunities to ensure alignment with student interests. A few parents, however, contradicted this perspective and valued that their student was being exposed to experiences outside their established areas of interests, which seemed to broaden horizons and allow for the consideration of new possibilities. Thus, this opposing sentiment reveals the need for programs to further evaluate if providing additional variety to students would be in their best interest. Additional workshops related to specific challenge areas such as math (money management) are also necessary. Parents stated that using a hands-on visual approach to learning would be the most beneficial to ensure knowledge and skill gains.

Findings from this qualitative analysis demonstrated that some parents had been holding their child back due to their fears and expectations of what their child could accomplish. At the time of enrollment into the PSE program, parents are encouraged to allow their students to be more independent, and let the student take on more responsibility in areas such as managing their schedules, attending classes and internships, and completing work on time. Allowing students to take responsibility and make choices is a desired expectation that many young adults with disabilities have of their parents (Cooney 2002). In line with prior research, the present findings indicated that as parents saw their child grow, and the potential for self-sustainability and independence in the future became more evident, parental expectations for their child’s future increased (Doren et al. 2012). As a result, some parents felt more comfortable taking a step back. These findings speak to the importance of not underestimating the abilities of young adults with ID and the value of PSE programs to help parents realize the many possibilities that are available to their child (Yarbrough et al. 2014).

While many parents agreed that independence was an important goal of the PSE program, there was a wide variety of opinions regarding communication between the program and parents. Some parents were comfortable with receiving limited feedback, while others voiced the need for greater involvement and constant feedback regarding their child’s performance in the program. This finding is in line with previous literature, where many parents of young adults with disabilities feel the need to continue to protect their “vulnerable” child (Gillan and Coughlan 2010), and remain as their “safety net” while paradoxically hoping to be less involved in their child’s life (Cooney 2002; Martinez et al. 2012) and encourage independence (Bianco et al. 2009).

PSE programs, however, are bound by the Family Education Rights and Privacy Act (FERPA; FERPA Regulations 2011). FERPA guidelines prohibit the sharing of educational records once a student is 18 and older, regardless of disability. As a result, there remains a challenge between parental expectations and the program’s legal obligations which is unique to PSE settings and parents of children with disabilities (deFur et al. 2001). Looking forward, programs may want to consider sharing general programmatic information with parents at regular intervals regarding activities and topics of workshops. This may augment student learning through consistent messages shared at home and the college environment.

This study highlights the delicate balance that PSE programs have to address by providing students with ID a supportive environment for cultivating independence and growth, while also reassuring parents and setting meaningful boundaries, which enhance (rather than deter) shared parental, student and programmatic goals.

Although efforts were made to ensure rigor in data collection and analysis, it is important to recognize a few study limitations. First, multiple interviewers and translators were involved in administering the interviews, and recording devices were not used. Instead, detailed notes were taken by the interviewer, and where possible verbatim quotes were captured. Therefore, even though all interviewers received the same training, it is possible that responses were still affected by interpretation, language, and social desirability bias. Future research should look to further standardize the interview process and also use voice recorders to enhance the validity of the data. Another study limitation was the small sample size, and overall low participant rate per semester, which could indicate volunteer bias. As a result, it is possible that findings may not generalize across all parents of students in the program and could instead, reflect the opinions of a few parents who were more involved or more likely to notice changes in their child. Future studies should build on these findings by encouraging participation from a wider range of parents, perhaps through the use of incentives.

Given the voluntary nature of parent participation in the PSE parent debriefings, and pilot efforts regarding data collection efforts in general, the lack of demographic data for parents is another study limitation. While there was limited in-depth parent data, students whose parents participated in the interviews and had demographic data on file represented a homogenous group regarding race and ethnicity, and it is important to note that the study findings pertain specifically to a PSE program in the Southeastern United States. Therefore, findings may not generalize to other parent populations who have children in similar PSE programs across the country. Future studies should expand upon these findings by examining PSE programs in other regions of the country from the parental perspective, and also by collecting more demographic data on parents.