Higher education is increasingly becoming an option for young adults with intellectual disability (ID). Although initial evaluations of postsecondary education for this population have been promising, a broader “quality of life” framework needs to be adopted in order to truly understand the impact of these programs. Moreover, researchers and program evaluators must collect longitudinal data that follows former students for multiple years and uses multiple measures. We conducted a pilot evaluation of the life outcomes of students who had attended at least two semesters in Kentucky's supported higher education program for students with ID, collecting data on life status and experiences using measures from the National Core Indicators–Adult Consumer Survey. The findings from this pilot study show better outcomes for young adults who participated in a postsecondary education program compared to young adults who did not, but these findings need to be considered in light of several limitations. In many respects, our data provided more new questions than answers. Recommendations for collecting and evaluating broad-based, longitudinal data to gain insight into the potential benefits of postsecondary education for people with intellectual disability are discussed.
There is growing recognition of the importance of higher education for students with intellectual disability, and the benefits that higher education can afford (Grigal et al., 2015). Students with intellectual disability (ID) who have participated in inclusive postsecondary education have reported increased satisfaction in terms of emotional well-being, interpersonal relationships, personal development, self-determination, and social inclusion (Hughson, Moodie, & Uditsky, 2006). Additionally, data from the national vocational rehabilitation (VR) database (RSA-911 from the U.S. Department of Education, https://rsa.ed.gov/) indicated that youth with ID who participated in postsecondary education were “26% more likely to leave vocational rehabilitation services with a paid job, and earn a 73% higher weekly income” (Migliore, Butterworth, & Hart, 2009, p. 1). Zafft, Hart, and Zimbrich (2004) reported that 20 transition-age students with ID who participated in an individualized postsecondary program experienced higher employment rates (100% vs. 43%), as well as higher wages and a need for fewer supports, in comparison to students with ID who attended a more traditional, high-school-based transition program.
Postsecondary Education: A Promising Practice
Although employment is frequently noted as a primary indicator of a successful postsecondary education experience (Grigal et al., 2015), it should not be considered the only marker of achievement. Participation in higher education brings a variety of important developmental opportunities, including acquisition of knowledge in a particular area of interest, socialization opportunities with same-age peers, and/or a needed step in the transition from youth to adulthood. Inclusive postsecondary education programs have also been recognized as a key to promoting self-determination, increasing feelings of self-worth, and developing skills to promote emotional and material well-being (Ankeny & Lehmann, 2011; Turnbull, Turnbull, Wehmeyer, & Park, 2003; Zaft et al., 2004). Given the growth of postsecondary programs for students with ID to approximately 265 throughout the United States (Think College, 2017), there is an increasing need to document the outcomes of graduates of postsecondary programs, and to consider the impact of higher education on key quality of life indicators other than employment, such as social relationships, self-determination, health and wellness, and community participation and inclusion. Having a better understanding of these outcomes, and how specific outcomes are related to postsecondary education program characteristics, is essential to progress in expanding and improving higher education opportunities for students with ID. The purpose of this article is to describe a pilot evaluation where broad quality of life measures were used to assess the impact of postsecondary education programs on students with ID in Kentucky (KY). We briefly summarize the findings in light of the limitations in our approach, and we propose recommendations for future evaluators and researchers interested in the long-term impact of these programs.
An Evaluation Pilot
We wanted to evaluate the impact of the higher education experience upon students with ID in Kentucky who had attended at least two semesters at one of the five college campuses participating in the state's supported higher education project for students with ID. We identified 37 students or former students with ID who had participated in a program for at least two semesters; of these students, 19 (51.4%) agreed to participate in our pilot. In this article, we refer to our pilot sample as the “Post-Secondary Education in KY” or “PS-KY.”
Our Measure: The National Core Indicator Consumer Survey
We chose a broad, nationally recognized measure of quality of life outcomes: the National Core Indicators Adult Consumer Survey (NCI-ACS), in order to get a more complete picture of how the PS-KY students perceived their lives. The NCI-ACS was developed by the National Association of State Directors of Developmental Disability Services (NASDDDS) and the Human Services Research Institute (HSRI) as a way to measure state developmental disability authority service quality. The survey was piloted in 1998 across six states, and has undergone ongoing development to bolster its psychometric properties (Human Service Research Institute and National Association of State Directors of Developmental Disability Services, 2012). The use of the instrument has expanded to 46 states as a means to assess quality benchmarks over time and across states. It is divided into a pre-survey/background section and direct interview, and is intended for adults, age 18 and over, who are receiving at least one state-funded service in addition to case management. The background data (demographics, employment status, health status) are collected from the person's case manager. The direct interview is intended to be conducted by a trained surveyor with the individual who is receiving services. Some items in this standardized, face-to-face interview may be answered by proxy, if necessary. Survey items address core indicators around employment, health and wellness, rights, community participation, relationships, and choice and decision making. Using the NCI-ACS allowed us to compare life outcomes for our students with similar samples of young adults with ID who did not participate in a postsecondary education program targeted to students with ID.
For the 19 students who agreed to participate, 18 students provided self-reports and a proxy report was provided by one parent. The parent did not respond to items that were disallowed for proxy respondents, as determined by the NCI-ACS survey protocol. The background section was completed as part of the interview process.
Description of Supported Postsecondary Experience
Students in the PS-KY sample were first selected for enrollment in the postsecondary education program through a written application and oral interview process. Criteria for selection included having a diagnosis of intellectual disability, having a career goal that could be achieved through a postsecondary educational program (coursework and internships), and perceived student motivation in pursuing a college experience. As such, each student's program and sequence of coursework was individually designed in partnership with the student to address his or her interest to participate in school extracurricular and social activities. Students were typically expected to enroll in 6 hours of credit per semester (either for credit or audit), and to complete at least one work experience each semester. All coursework was inclusive—Kentucky's five postsecondary programs ensured students always attended classes and campus activities with other college students from the general student population.
What We Found
The average age for the students in the PS-KY sample was 24.6, and the majority (63.2%) were women. Our student sample was 86.6% White, 10.5% Black, 3.4% other races, and 5.3% Hispanic, which was very close to the racial and ethnic make-up of the state itself. None of the students were married, and they lived predominately with parents or relatives (78.9%). At the time of the interviews, roughly 37% of the students were employed in the community. When asked if they would like to have a paid job in the community, all of the students who were not currently working indicated that they would like to have a job. The majority of students (66.7%) engaged in some kind of volunteer work.
Half (i.e., 50%) of PS-KY students stated that they were often or sometimes lonely; this has been a pervasive issue in Kentucky, as people receiving supports from state-funded agencies have reported loneliness exceeding NCI national averages throughout much of the 2000s and beyond. Yet, 83.3 % of PS-KY students indicated that they had friends, and 77.8% had a best friend. Similar to college students from the general population, 94% of PS-KY reported they could go on a date.
The majority of PS-KY students reported they exercised regularly (73.7%). Nearly all of them reported exercising at a moderate level of intensity for 30 minutes per day. Approximately four out of five (i.e., 83.3%) considered themselves to be in either excellent or very good health.
In regard to community participation, 100% of the students reported that they could help others in their community; they also reported high rates of activities such as going out to eat (89.5%) and attending a religious service (66.7%) within the past month. Additionally, over 84% had gone on a vacation in the past year. Under the dimension of choice, 100% of PS-KY students indicated that they could choose what they wanted to do for free time, and 78.9% could determine their own schedule, even though the great majority lived with their parents or family.
Table 1 shows these quality of life indicators in comparison to the 158 other young adults with ID in KY who participated in the statewide NCI-ACS survey (Human Service Research Institute and National Association of State Directors of Developmental Disability Services, 2015) during the same year. As the table shows, the statewide sample had substantially lower rates of employment, and were less likely to report wanting to work (if not working) in comparison to the PS-KY sample (53.4% vs. 100% of the students wanting to work if not working). The statewide sample was also less likely to be engaged in volunteer work and reported having fewer friends and being less able to go out on a date. The two groups were similar, however, in terms of reported loneliness. Also, the statewide sample was less likely to report they exercised regularly, as well as less likely to report being in good health. In terms of community participation, young adults in the statewide sample felt they were less able to help other individuals in their community, did not eat out as much, were less likely to attend religious services regularly, and were less likely to have gone on a vacation at least once in the last year compared to their PS-KY counterparts. Finally, a smaller percentage of the statewide sample reported being able to choose their own schedule and what to do during their free time as compared to the PS-KY sample.
Although the students with ID in the PS-KY sample indicated higher outcomes in employment, social relationship, health, community inclusion, and choice in their lives than did similarly aged young adults with ID in the statewide sample, we cannot draw any definitive conclusions about the impact of postsecondary education in contributing to these differences, because we do not know to what extent these two groups were comparable in regard to a variety of critical characteristics (e.g., family support, level of intellectual disability, family socioeconomic status, community opportunities). Moreover, there is no way to map specific outcomes reported by PS-KY students directly to features of their postsecondary education programs; differences in outcomes might reflect variables in people's lives (e.g., family expectations and resources, quality of public schooling) for which we were unable to account. Finally, although the use of multiple colleges extends the generalizability of our findings beyond just one college program, and each of the five programs would have been classified as inclusive, we cannot attribute these findings to any specific program characteristics or level of student support within those colleges. Though we are encouraged that students in postsecondary education consistently reported more positive life outcomes in life areas in which young adults with ID in Kentucky (and nationally) have historically struggled (including employment, health, relationships, community inclusion, and choice), this pilot evaluation merely indicates in broad lines where we think practitioners and researchers interested in postsecondary education for students with ID must go in terms of evaluating the impact of higher education programs. In summary, our data are promising and encouraging, but we are unable to make scientifically defensible knowledge claims due the potential influence of confounding variables.
We urge future researchers investigating the life experiences and status of students with ID in postsecondary education programs to go beyond collecting data that can only provide descriptive findings. Future researchers should consider the following when designing their investigations:
Employment (and the quality of that employment) is a critical element in evaluating the impact of higher education, and therefore needs to be investigated comprehensively. Is the student in a career of his or her choice, are the wages commensurate with what other individuals in that career are earning, and are there health and other benefits associated with the position?
Although employment outcomes are important, employment in a chosen career is not the only reason to go to college. Future researchers need to look beyond employment and investigate how postsecondary education impacts health and wellness, relationships, community inclusion, and self-determination. In evaluating the impact of higher education for students with ID, evaluators and researchers need to consider all of these measures, especially those areas in which young adults with ID have persistently and pervasively struggled. An instrument like the National Core Indicators Consumer Survey, precisely because it is a tool used by the great majority of states in evaluating the impact of services, provides a broader framework and enables comparison of results to other young adults with ID over time.
Comparison groups have to be truly comparable to enable legitimate inferences to be made in terms of relating life outcomes to postsecondary education experiences. Some of the key variables to take into account include severity of intellectual and adaptive behavior deficits, extent of family support, family background (including socioeconomic status), and intensity of support needs. In our pilot study, we used a statewide NCI-ASC sample of similarly aged young adults with ID as one example of a comparison group, though we can hardly infer these that two groups were comparable. Ensuring comparability will require careful thought and precise consideration of potential confounding variables.
Life outcomes need to be aligned and considered in regard to specific program characteristics. As higher education programs evaluate their long-term impact, there needs to be a clear description of program goals and components (e.g., What is the program wanting to accomplish? How are students selected? What types of course work do students take and what are expectations for successful completion? What learning opportunities with other college students are available? What opportunities are available for campus extracurricular and leadership activities? What is the frequency and structure of work-related internships? Are there opportunities to live on campus or with other students? How do students evidence that they have successfully completed the program?; see Grigal, Hart, & Weir, 2013).
Follow-along data (i.e., longitudinal follow-up with multiple checks over multiple years) of program graduates are needed, as opposed to one-time follow-up data collection. Are graduates progressing in their careers? Do they have additional opportunities to live more independently? Do they join community and civic clubs and become active in other ways in their community? Do the benefits of participation persist over time? What do the graduates consider most and least valuable about their educational experiences several years removed? Follow-along data collected across multiple cohorts of students would be especially enlightening for program evaluation and improvement.
The opportunity to attend college—to study and work towards a career, to expand one's world and develop new relationships, and to learn a new-found independence—is an important life marker (Ankeny & Lehmann, 2011; Grigal et al., 2013). If that opportunity is to remain more than just a dream for students with ID, researchers have an obligation to conduct rigorous and longitudinal evaluations of the impact of postsecondary education programs on the life course of young adults with ID. Because higher education programs for students with ID have used, and continue to use, several discrete program models (Grigal, Hart, & Weir, 2012; Grigal et al., 2013), there is a need to clearly delineate the program characteristics of the postsecondary experiences that are being evaluated. If this promising and important practice is to continue to mature, credible evidence of what works best and what doesn't work particularly well needs to collected. Researchers must move beyond anecdotal and one-time follow-up reports.