Abstract
BACKGROUND:
Postsecondary education (PSE) programs for students with intellectual disability (ID) have been increasing in recent years. Career development and skills for independent living are frequently cited objectives of PSE programs (Grigal, Hart, & Weir, 2012) yet evidence for the immediate effects of these programs is sparse.
OBJECTIVE:
In this study we conducted an initial investigation to monitor changes in independence during a one year period for six students with intellectual disability (ID) participating in an inclusive postsecondary education program.
METHODS:
Adaptive behaviors and support needs were measured using the Scale of Independent Behaviors-Revised (SIB-R; Bruininks Woodcock, Weatherman, & Hill, 1996), the Support Intensity Scale (SIS, Thompson et al., 2004), and weekly hours of support provided to the students were directly measured. A single group, pre-post design was used to compare measures of independence from the beginning and end of the academic year.
RESULTS:
Initial results, in the form of descriptive statistics, show evidence that students, living on a college campus and participating in a PSE program, learn to function in ways that reduce the needs for support without limiting participation in inclusive activities.
CONCLUSION:
Recommendations for improving impact assessments of PSE programs are also discussed.
Introduction
Think College (2017) has recently listed 264 postsecondary education (PSE) programs for individuals with intellectual disability (ID) located in colleges and universities throughout the United States and Canada. This represents a significant increase in these programs over the last 20 years, and there is an expectation that programs will continue to emerge (Grigal, Hart, & Weir, 2014). However, despite the increase in the number of PSE programs, relatively little is known about how the programs directly impact students with ID.
In the few studies that have analyzed the effects of broad PSE programming, researchers have looked at participant outcomes more in terms of subsequent status than personal impact while in the program. For example, when examining predictors of employment outcomes from the National Longitudinal Transition Survey 2 (NLTS-2), Grigal, Hart, and Migliore (2011) found that attending a PSE program was associated with better employment for students with ID. Zafft, Hart, and Zimbrich (2004) similarly found that students who participated in PSE programs obtained employment at higher rates, earned more per hour in their jobs and required fewer jobsite supports. In another study, Migliore, Butterworth, and Hart (2009) examined results from the national vocational rehabilitation (VR) database to determine if participation in a PSE program was related to subsequent employment. Like Zaft et al. (2004), findings concluded that any PSE participation for individuals with ID led to better employment rates and higher earnings.
Beyond these limited employment-based results, the effects of PSE program participation on the development and support needs of individuals with ID are largely unknown. To inform transition choices, students and their parents should know the kinds of effects PSE programs may lead to. Adult service agencies such as VR and community support agencies providing funding through Medicaid waivers also will likely want to know the effect of PSE programs if they are going to support persons attending them.
The present study was undertaken as an initial effort to report short-term (approximately one year) changes on the adaptive behavior and support needs of students with ID participating in an inclusive PSE program. To do this, we assessed changes in support needs, adaptive behaviors, and the number of hours of personal supports participants needed to fully participate in campus life.
Method
Participants and setting
Participants included six young adults with ID and secondary developmental disabilities between the ages of 19 and 23 attending the PSE program described below. The program provided an inclusive, 2-year, on-campus experience at a public, regional university in the Southeastern United States. Participants’ on-campus life was fully inclusive with no separate facilities, settings, housing or classes with the exception of individual tutoring on specific skills. On-campus support was provided by approximately 200 undergraduate students who facilitated participants’ living on campus, attending classes, and engaging in social and recreational activities. At the time of the study each participant was completing requirements for a 2-year certificate offered through the university’s Office of Educational Outreach. Table 1 contains relevant participant information.
Participant Information
Participant Information
Prior to data collection, approval for the study was obtained from the Institutional Review Board at the university where the study was conducted. If families and participants elected to take part in the study, then necessary student consents/assents and parent consents were gathered.
As a requirement for participation in the PSE program, each student had an individualized plan for college participation and participated in monthly person-centered planning (PCP) meetings. Decisions about scheduled activities, the amount of time participants received natural supports, and changes in support needs were systematically evaluated during PCP process by participants, PSE staff, family members and natural supports. Through consensus, and with the agreement of the participant, decisions could be reached for greater independence in various activities. Conversely, a participant could ask for increased support for certain activities if he or she desired. Subsequent weekly activity schedules reflected chosen activities for student to pursue without support.
The policy of the PSE program was to reduce the amount of support time provided to each participant when it was practical to do so, and provide opportunities for each participant to engage independently in on-campus activities. The process for fading support was equally guided by the desire for a participant’s independence and overall concerns about safety and/or liability.
Assessment instruments and data collection
SIB-R and SIS
Family members with close knowledge of participants’ skills and functioning were interviewed to provide information about adaptive behavior and support needs using the Scales of Independent Behavior - Revised (SIB-R; Bruininks et al., 1996) and the Support Intensity Scale (SIS; Thompson et al., 2004). The SIB-R was designed to measure functional independence and adaptive behavior and has test-retest reliabilities that fall between.83 and.96 (Wells, Condillac, Perry & Factor, 2009). The SIB-R yields Support Scores ranging from 0–100 that comments on adaptive behavior and need for support (Bruininks et al., 1996). Scores from 1 to 24 relate to a pervasive need of support where, at the other end of the spectrum, scores from 85 to 100 equate to infrequent need of support or no need of support.
The SIS captures intensity of individual support needs that a person requires to fully participate in everyday life activities. Internal reliability for subscales on the SIS have been reported at.94 or higher (Thompson et al., 2004). A standardized score, the Support Needs Index (SNI), is derived by measuring support needs across six life activity domains. The average support score among individuals with developmental disabilities is 100. Values greater than 100 indicate greater than average support needs. Lower SNI scores should correspond with greater SIB-R Support Scores and indicate an increased ability to independently participate in one’s community.
Direct measures of support
To facilitate scheduling, we used Whentowork® software which allowed us to measure hours of support each participant received during the academic year. Using weekly support hours we derived a supported hours per day average. This unit of measurement was preferable to total hours of support per week which were vulnerable to inflation from weekend stays on campus. To achieve an approximation of support received Monday through Friday (a typical academic week), the average daily support was multiplied by the five days in a work week and reported for each participant.
Design
SIB-R and SIS data were collected in early August and again late in April, paralleling the beginning and end university’s two-semester academic year. Hours of supports were collected weekly during the same academic year. A single group pre-post quasi-experimental design was employed to investigate whether chosen measures sufficiently monitor participant independence. Despite the small sample size (n = 6) and an inability to meet assumptions for normally distributed data for statistical analysis, a single subject design was not deemed practical because, like all college students, participants were responsible for attending classes throughout the semester. Multiple baselines or delaying students’ introduction to the college environment, therefore, was viewed as impractical and unethical.
Data analysis
SIS and SIB-R scores for individual students (along with means and standard deviations) are reported for the first and second times of data collection (i.e., August, T1; and April, T2). Average hours per week of support data for each participant (along with means and standard deviations) are reported in four quarters of the assessment period based on divisions created by semester breaks. These were: 1) the eight weeks before fall break (Q1) and 2) the seven weeks after fall break (Q2); 3) the eight weeks before spring break (Q3) and 4) the seven weeks after spring break (Q4; see Table 2 for descriptive data).
Participant Scores on Dependent Measures
Participant Scores on Dependent Measures
Note. T1 and T2 refer to “time 1” and “time 2”; SD is standard deviation; SNI is support needs index.
All participants had greater SIB-R Support Scores at the end of the academic year than at the beginning of the year, indicating that all were perceived by reporting family members as displaying more adaptive skills and requiring less support in their daily lives. The SIS-SNI also showed an overall reduction of support need. On average, SIS-SNI scores decreased during the academic year indicating participants patterns of support needs had decreased.
Participants also relied on fewer hours per week of direct support in the last quarter of the academic year (Q4) than they did in the first quarter (Q1). On average, the hours of support required per week decreased across each quarter, with individual exceptions. Across the year (i.e. from Q1 to Q4), the reduction in hours of support per week ranged from 4.41 (for Donald) to 14.63 (for Manuel). On average, the participants required 11 fewer hours of support per week after one academic year of participation in the PSE program. All measures used in this study indicate that participants progressed toward independence while requiring less direct support.
Discussion
The purpose of this study was to examine outcomes for six individuals with ID over one academic year in a PSE program using three measures (i.e., SIB-R; SIS; and hours of support required per week). This research provides initial evidence that PSE students learn to function in ways that reduce the need for support while maintaining opportunities to engage in meaningful activities. We found over one academic year, that six PSE students with ID improved on measures of adaptive behavior and support intensity needs, and decreased the number of hours of required support by an average of 11 hours per week. Findings from these multiple measures imply a short-term personal benefit for the students attending the PSE program.
The participants’ reduced hours of support may indicate the development of a supportive fit between individual and the broader college environment. Some of the person-environment fit can be attributed to assistive technologies and accommodations such as daily activity schedules which have been shown to increase independent task initiation and on-task behavior (Koyama & Wang, 2011). It is also likely that the campus became incrementally more supportive. Inclusion in multiple settings and activities allowed for broad exposure and likely promoted a co-development of person and environment. Generally, as individuals with disabilities actively participate in their communities they continue to improve pro-social and adaptive behaviors (Harner & Heal, 1993; Wehmeyer et al., 2008). As campus environments become more open and accessible, the attitudes of non-disabled college peers better accommodate students with ID (May, 2012; Westling, Kelley, Cain, & Prohn, 2013). By interacting with classmates with ID, college peers also perceive stronger benefits of inclusion and greater abilities of students with ID (Griffin, Summer, McMillan, Day, & Hodapp, 2012). Attitudinal, behavioral and political shifts result in campus communities that further meet the needs of all learners, and in this study likely contributed to participants’ decision to fade support.
Limitations
Without a control group we could neither determine which factors may have contributed most to changes in our measures nor were we able to determine that our outcomes were due to programmatic causes. We also recognize that the outcomes from only six students from one PSE program are not generalizable. It is probable that students do not represent other college students with ID much less the general population of transition-age adults with ID.
In PCP meetings, participants made decisions to reduce hours and the support team helped monitor the process. Had more objective decision-making regarding hours of support been possible, and had it been possible to separate it from the measurement of support, then we could have more confidence that measurement was independent from the decision-making process.
Future research should attempt to identify variables that influence the need for less support and then influence the occurrence of these variables. The current study showed decreased dependence among students participating in a program with full participation in college courses, inclusive on-campus housing, and the investment of time by approximately 200 college-aged natural supports per year. The degree to which specific program components contributed to results, however, is unknown.
The program in which the students were enrolled is one of approximately 260 PSE programs in the United States. Each of these programs are differently structured and function within disparate institutional contexts. Type of residency, type of coursework, occupational preparation, support structure, and student self-directedness are a just a few PSE program components that can affect student growth and development. Given the lack of knowledge about the relationship between programs’ components and their relation to outcomes, future research is needed to understand how PSE program components are related to outcomes.
Implications for practice
Notwithstanding the numerous limitations and the need for additional research, there are several implications for practice related to decreasing support, increasing independence, and improving adaptive behavior. First, and most basically, it is important to recognize that if some amount of support is initially required for operating in a natural environment, then fading support should be a planned part of the learning process. Data from this preliminary study demonstrated that support can be faded without a loss of adaptive behavior skills. As people with ID learn to perform with more competence, it is likely that the support they have been provided can and should be reduced.
We found that the demand landscape in college varied. Although some demands remained constant, such as dining and campus navigation and could be mastered more quickly, other demands could vary based on circumstances. For example, students often experienced increased academic demands during mid-term and final assessments, and during such times required proportionate increases in support. As students developed vocational skills, employers expected participants to attempt new tasks, and each new set of tasks increased support needs. After weeks on campus, students sought more community participation in clubs, organizations, and volunteerism. Increased social participation could also increase, in the beginning, demands and support needs. New contexts created the need for new social, personal, and problem solving skills. Paradoxically, increased independence often led to more support needs as new demands replaced old ones. It can be assumed that individuals grow and develop by seeking and attempting increasingly complex tasks. Therefore, while some reduction in support should be regarded as positive, planning teams should be cautious of dramatic support reduction which may indicate insufficient complexity and novelty in the demand landscape.
Second, the use of natural supports, as was done in this study, is likely to facilitate the process of fading support and therefore natural supports should be utilized whenever possible. They are beneficial for two reasons. One, natural supports operate in typical environments with the person with ID and are aware of the individual’s ability in those environments, including any nuances of his or her performance. Additionally, natural supports can provide peer-level recommendations related to increasing or decreasing supports and their opinion may be more readily accepted by the person with ID than that of someone in a position of authority.
Third, as decisions are made about the need for support, it is important to keep in mind the behavioral performance of the individual and any changes in this performance. In some cases, as supports are reduced, adequate performance may decrease or may not generalize sufficiently. This would suggest that re-instating support would be an appropriate decision. The key is to monitor performance through a process such as person-centered planning, and be aware of any decrease in the quantity or quality of performance.
Finally, family involvement and participant voice throughout considerations for changes in support level is recommended. Along with others, participants and their parents provided important input in the comfort level of the person with ID to engage in certain activities with less support. Our decision-making process was somewhat subjective, but it was nevertheless a systematic process that allowed for the input of multiple stakeholders. Other decision-making processes can be explored, but the consensus building process that we used was generally well-accepted and resulted in successful decreases in support.
We recognize that support provided by the college community was critical for creating an inclusive PSE experience—one that contributed to increased self-sufficiency for students with ID. Developing similar support structures outside the college gates, though challenging, is a worthy pursuit for those who have accessed college and for many more young adults unable to access such an opportunity.
Conflict of interest
None to report.
Footnotes
Acknowledgments
This study was supported by a grant from the U.S. Department of Education (P407A100004). The authors wish to thank the students who participated in the study and their parents.