Lehr, Ph.D., Associate Dean of Academic Affairs, Associate Professor of Special Education ABSTRACT This study explored the expectations and experiences of parents whose adult children gr
Introduction
Postsecondary education for young adults with intellectual and developmental disabilities (ID/DD) in the United States is a relatively new field that is growing rapidly and evolving The overarching goal across programs is to provide these students with access to college experiences similar to their same-aged peers while increasing their independence in daily living and work Strategies to achieve these goals vary widely from program to program, reflecting differences in how much students participate in traditional college coursework and dorm life, the structure and availability of vocational curricula, and how credits, certificates, or diplomas are awarded (Grigal et al., 2014; Plotner & Marshall, 2015; Grigal & Hart, 2012; Grigal, Hart, & Weir, 2012; Katovitch, 2009).
Historically, separate facilities and coursework for students with ID/DD were the norm in the United States’ small number of college-based programs; today, programs exist on a continuum from highly inclusive models—where students with ID/DD may engage in mainstream college coursework, dorm life, and social activities—to highly separate models, where coursework, facilities, services, and activities are designed exclusively for them In the middle of this continuum are programs that offer some experiences only for students with ID/DD alongside real opportunities for inclusion into broader college life (Grigal et al., 2014; Grigal, Sax, Martinez, & Will, 2006).
Within mainstream campus life, the emergence of highly inclusive postsecondary programs for young adults with ID/DD has coincided with the rise of specialized (separate) programming, which is now facing competition and criticism (Grigal & Hart, 2012; Grigal et al., 2014; Uditsky & Hughson, 2012).
To date, little comparative research between specialized models and more recently established and more inclusive models has been published It remains relatively unknown whether data will support the emerging ideology that separate programs are less desirable and effective than inclusive ones Even once newer programs have been in operation long enough to have several years of graduates to study, comparative research will be difficult because of the variety of programs in each of these broad service delivery models For now, the field can turn to the personal accounts of graduates and their parents to explore how these programs are experienced by families and help to inform future research efforts Although the results of single-site experiential research cannot tell us whether one model is better than another in helping graduates achieve positive adult outcomes, it can help to inform the question of whether traditionally separate models have value for graduates and their families This study seeks to capture parents’ expectations for and experiences of the postsecondary education (PSE) of their adult sons and daughters with disabilities The site of the research is the Threshold Program at Lesley University, a postsecondary program with both specialized elements and some opportunities for inclusion of its students into mainstream campus life Understanding what parents expect out of a college program and asking them to reflect on how a PSE experience impacted their graduates’ lives will help new and existing programs
To design more effective programming, institutions should first understand one of their major target audiences and tailor offerings accordingly Additionally, considering parents’ perceptions of how mainstream college integration might influence their graduates can illuminate broader national discussions about the value of inclusive versus separate experiences By analyzing these insights, programs can weigh the benefits and drawbacks of inclusion and specialization and thoughtfully redesign or reorganize their models to meet the needs of their target student populations while aligning with the missions of the colleges or universities they serve.
Parental expectations and opinions about the role and efficacy of postsecondary education for young adults with disabilities have been understudied, yet these expectations strongly influence achievement, independence, and awareness of and access to postsecondary options Federal funding opportunities under the Higher Education Opportunity Act of 2008 have shaped the purpose, goals, and characteristics of postsecondary programs for this population Thanks to Think College and its national coordinating center, the field is trending toward maximum inclusion of students with intellectual and developmental disabilities in university coursework and campus life.
Education, 2012) The national coordinating center reports “it is concerning that the
Specialized programs may be less effective and less ideologically aligned with inclusive postsecondary education opportunities for adults with ID/DD than inclusive programs, a concern raised in national discussions; however, this possibility has not been empirically studied and cannot be assumed as fact Before dismissing the legitimacy of specialized programs amid shifts in the field, the stories of parents whose adult children attended these programs can reveal whether there remains value in specialization.
Parents’ opinions, expectations, and experiences regarding their children’s college choices have increasingly been documented for mainstream student populations (College Parents of America, 2007; Ruffalo Noel Levitz Higher Education Consultants, 2012; Spence, 2012), and these insights should be considered equally valid for college students with disabilities Decision makers in postsecondary programs serving students with intellectual or developmental disabilities should value and incorporate parental input when developing supports, policies, and programs that promote student success.
Understanding how parents view the purpose of a postsecondary experience in their children's lives is essential for ensuring that programs for individuals with disabilities offer the needed and desired programming, satisfy families, target appropriate prospective students, and hire staff with the expertise to support program goals In addition, parents are often the driving force behind developing new postsecondary programs, so it is important to provide them with literature that conveys the experiences of other parents as they decide which programs to advocate for in their communities.
This study examines how the parents of alumni from a postsecondary program for young adults with disabilities describe the expectations they held for their children's postsecondary education and later adulthood It also analyzes how those actual experiences compared with those initial expectations.
Parents' expectations for their sons' and daughters' adult lives often start with conventional ideas about education, work, and family roles, but these expectations evolve as children grow up, guided by their achievements, interests, peer influences, and broader cultural shifts As kids move through school and adolescence, what counts as a successful adult life becomes more individualized and contingent on changing opportunities, with aspirations shifting from traditional paths to diverse careers, higher education choices, and values like independence and social responsibility A college program can be a turning point in this evolution by expanding access to information, mentorship, internships, and networks that open up new possibilities, helping students develop skills and confidence, and prompting parents to recalibrate expectations about feasibility and timing of goals in career, finances, and family life.
2) What do parents view as the critical impacts of a college program on their sons and daughters?
3) How did parents’ actual experiences of their children’s college program compare with their hopes and expectations, and how do they imagine a more
6 inclusive experience may have compared?
This narrative inquiry investigates the experiences of parents of adult children with intellectual or developmental disabilities (ID/DD) who graduated from a college-based postsecondary education program The study recruited parents of graduates who completed their programs between 2008 and 2014, inclusive, a timeframe that reflects rapid growth and increasing inclusion in higher education for people with ID/DD, and that may have exposed families to multiple programs during the selection process Participants were selected using maximum variation sampling to ensure diverse perspectives among the parents and the graduates they represented Seventeen parents were interviewed and audio-recorded by the researcher using semi-structured interviews.
This study investigates parents’ perspectives on the postsecondary experiences of their adult children with disabilities, how these experiences influence their transitions to adulthood, and parents’ views on inclusion in college for this population It also examines national trends in postsecondary education for young adults with ID/DD, which are rapidly changing and placing greater emphasis on academic and social inclusion in postsecondary settings.
Current literature on the campus movement for young adults with intellectual and developmental disabilities (ID/DD) largely focuses on advocacy efforts, professionals’ experiences, and research, while the voices of the young adults and their families are underrepresented As traditional college programs increasingly seek parent input on their children’s college experiences, it is time for programs serving students with ID/DD to follow suit Understanding what parents hope for in their children's adult lives and postsecondary education is essential for designing effective programs and for informing future studies that compare different program models Although prior research has examined either parents’ expectations for their intellectually disabled children's involvement in postsecondary education (Griffin, McMillan, & Hodapp, 2010) or their experiences of that involvement (Hughson, Moodie, & Uditsky, 2006), no study has yet explored both perspectives together.
Review of the Literature
Attending college offers academic enrichment, career exploration, and social growth, serving as a rite of passage into adulthood and an investment in the future Historically, people with intellectual or developmental disabilities were unable to participate in higher education due to graduation and standardized testing requirements, a barrier identified by Hart et al (2006) These obstacles have been seen as socially unjust and damaging by advocates, self-advocates with disabilities, and families, fueling grassroots efforts and legal advocacy that expanded college access for ID/DD students Today, roughly 250 college-based postsecondary education (PSE) programs in the United States serve this population (Think College, 2016) Recently, many programs have focused on enabling maximally inclusive college experiences that bring students as close as possible to traditional undergraduate life (Hart & Grigal, 2013).
Early research suggests that students with intellectual and developmental disabilities who participate in postsecondary education experience greater employment opportunities, higher wages, and more independent work than peers with the same disabilities who do not participate in postsecondary programs (Grigal).
Research by Dwyre (2010), Grigal, Hart, and Migliore (2011), Migliore, Butterworth, and Hart (2009), and Zafft, Hart, and Zimbrich (2004) indicates that most postsecondary education programs currently operating for this population were developed within the last 15 years, and many of them are still evolving to better meet diverse learner needs.
The approach emphasizes inclusive, individualized education, enabling or requiring students with disabilities to enroll in mainstream university courses and to receive appropriate academic supports on a case-by-case basis (Grigal, Hart, & Weir, 2011) In some older programs, established as separate experiences for young adults with disabilities on college campuses when inclusion was virtually unheard of, students with ID/DD have remained largely separate from undergraduates.
Background: Students with intellectual disabilities are not generally expected to attend college (Grigal & Hart, 2010; Newman, 2005) As a result, postsecondary education is stated as a transition goal in their federally mandated Individualized Education Programs (IEPs) less often than for students in other disability categories (Grigal et al., 2011; Cameto, Levine, & Wagner, 2004) This pattern reflects the generally low expectations for these students when planning for postsecondary pathways.
ID, college programming for this population has existed since at least the 1980s
Programs allowing students with ID/DD to participate in college experiences, with or without inclusive college coursework and social activities, were developed in
Massachusetts in 1982, New York in 1987, Alberta, Canada in 1987, California in 1995, and Australia in 1999, among other places (Lesley University, 2013; O’Connor, Kubiak, Espiner, & O’Brien, 2012; Taft College, 2013; VanBergeijk, 2012)
College-based postsecondary education options for students with intellectual disabilities vary in their structure, goals, funding, and instructional methods These programs have typically been founded by parents, educators, or disability service providers seeking to address the gap in postsecondary opportunities.
There are 15 educational services available to students with intellectual and developmental disabilities (ID/DD) as they transition from high school into postsecondary settings These grassroots mobilizers often visited established programs to observe how other schools were supporting this transition, but they did not yet have validated best practices to guide the development of new programs (Grigal et al., 2011; Hart, Mele-McCarthy, Pasternack, Zimbich, & Parker, 2004).
Since 1973, colleges that receive federal funds have been required to provide reasonable accommodations to academically eligible students with disabilities, ensuring access to coursework, campus spaces, and extracurricular activities, as enforced by the U.S Department of Education, Office for Civil Rights It was not until 2008, however, that federal law specifically addressed access to college for people with intellectual disabilities, through the Higher Education Opportunity Act, which funded model demonstration programs for such students at institutions of higher education Although the HEOA does not explicitly cover students with borderline intellectual functioning, many in that category participate in HEOA-funded programs because the statute's broad ID/DD definitions encompass them.
The Higher Education Opportunity Act (HEOA) does not guarantee access to higher education for students with disabilities who are not academically eligible Specifically, it does not grant admission to a student with an ID/DD who did not pass the state’s required standardized testing and instead received a certificate of high school completion the right to be admitted to a college or university that requires a high school diploma or GED.
16 education to investigate ways to include students with intellectual disabilities in campus experiences and funds a cohort of institutions engaged in such work
In 2010, 27 colleges received funding to establish or expand HEOA model demonstration programs—transition and postsecondary programs for students with intellectual disabilities (TPSIDs) The aim was to provide educational, vocational, and independent living services to young adults with ID/DD on college campuses Some recipients launched multiple program sites, creating 43 model demonstration sites in the first round (Hart & Grigal, 2013) A second group of 25 TPSID projects received funding in 2015, eight of which were previous grant recipients (Think College, 2015) Each TPSID must demonstrate that their students are socially and academically integrated with non-disabled peers to the maximum extent possible, and over a five-year period must develop, implement, and evaluate inclusive college programming, making evaluation results available to others seeking to develop or remodel similar programs.
Models of postsecondary education programs Hart et al., (2006) describe PSE options in the US as falling into three models: the “substantially separate model,” the
Two approaches to supporting students with disabilities in higher education are the mixed/hybrid model and the inclusive individual support model In the mixed/hybrid model, classes in substantially separate programs are reserved for students with disabilities While these students may have some opportunities to participate in inclusive campus activities or use college facilities, most of their experience remains separate from matriculated college students These arrangements illustrate the ongoing balance between specialized instruction and broader campus inclusion.
17 programs often have a vocational component with on or off-campus internship opportunities, typically unpaid
Mixed/hybrid postsecondary programs blend vocational components with opportunities for students to participate in inclusive college classes alongside matriculated students without ID/DD, offering greater social inclusion than substantially separate programs, though they often still require or feature coursework or social experiences separate from undergraduates In both substantially separate and mixed/hybrid models, supports such as independent living skills, transportation assistance, vocational education, and social skills training are typically provided by the postsecondary education (PSE) program itself and by the college or university it is affiliated with, rather than by outside organizations The Threshold Program uses a mixed/hybrid model overall: a few students each year enroll in college classes and many participate in campus activities, clubs, and NCAA sports with undergraduates, but the curriculum, residential facilities, staffing, and other aspects of the program remain separate from the undergraduate experience.
Programs following the inclusive individual support model provide tutoring, mentoring, advising, or other academic services as determined by individualized plans developed with students, with the goal of maximum possible inclusion in mainstream college coursework and campus life (Hart et al., 2006) These programs typically operate out of an existing department or office within the higher education institution rather than from a specially designed program base, thereby integrating support into the standard college experience and making it as mainstream as possible.
18 possible The role of the institutions of higher education under this model is to include students in mainstream education and provide supports to make that possible
Supplementary supports for students with intellectual and developmental disabilities (ID/DD) may be provided by the program itself, partner non-profit organizations, or government agencies, all working closely with each student, their family, and a program mentor Programs commonly collaborate with local school districts, vocational rehabilitation offices, and disability-service agencies to share operating costs and arrange disability-support services such as independent living assistance, mobility coaching, and employment support, although these services may not be delivered directly by the college Overall, these programs tend to offer little or no specialized coursework or activities solely for students with ID/DD (Hart et al., 2006).
Inclusive individualized and mixed/hybrid models place students with intellectual and developmental disabilities (ID/DD) in campus coursework and activities alongside peers without disabilities, delivering inclusive higher education experiences The degree of inclusion these models provide varies widely across colleges and universities and from student to student.
Methods
This qualitative study adopts the tradition of narrative inquiry, a method that examines individuals’ experiences and identities through interviews and other qualitative data to produce rich, textured descriptions of the people and the stories that shape their lives Narrative inquiry enables researchers to learn how people create and articulate meaning in their lives, making it especially suitable for exploring the nuanced and complex experience of parenting a child with disabilities (Green, 2007, p 152).
The Role of the Researcher
From August 2007 to the date of this writing, the researcher has been an employee of the Lesley University Threshold Program, primarily serving in the Residence Life and Alumni Center departments and teaching courses to current students and alumni Beginning as a part-time Resident Assistant in the dormitories from August 2007 to June 2009, she transitioned to a full-time administrative role as Director of Residence Life and Student Services, and has since served as a full-time administrator, currently as Associate Director and Director of Alumni Programs She has led major initiatives, including fundraising and grant proposals, establishing an Alumni Center to serve graduates of the Threshold Program, developing Threshold courses offered for college credit, creating cognitively accessible online courses, and organizing a program self-study for accreditation review by the New England.
At the Association of Schools and Colleges, most of her daily work centers on designing and delivering services and interventions for Threshold alumni Her close collaboration with graduates and their families means this research will inevitably draw on her existing understanding of the subjects, and she will discuss these experiences in the study's discussion section to clarify how they shape her interpretation of the interviews, while remaining as objective as possible in her analysis Her history with the program provides positive benefits to the study by giving her a foundational understanding of the sons and daughters of the participants and enabling more fruitful interviews She has also facilitated focus groups with parents of Threshold alumni, establishing her as someone who can effectively elicit families' experiences.
The Threshold Program at Lesley University was among the first residential and vocational initiatives on a college campus designed to serve students with developmental disabilities and other special needs, and it will serve as the site for this research study Founded in 1982, Threshold aims to support the independence and vocational success of young adults aged 18–26 with IQ scores typically ranging from 70 to 85, a group that has historically been underserved by state and federal disability service agencies as well as by institutions of higher education Individuals with IQ scores in this range often do not qualify for Social Security benefits, Medicare coverage, or disability-related housing supports available to people with other types of disabilities, even though their disabilities significantly affect their ability to live independently and to work enough to support themselves financially.
Although most other college-based postsecondary programs of this kind serve students with mild intellectual disabilities (i.e., students with IQ scores from around 50 to
Individuals with an IQ of 70 or below and impairments in daily functioning qualify for financial and residential supports from most states and from the federal government Threshold serves students with somewhat higher test scores and greater functional independence, in part because of drastic nationwide underservice IQ scores fit the standard curve, with scores around 70 at the lower end of the distribution.
Approximately 14% of students score between one and two standard deviations below the mean, which aligns with statistical expectations that this range comprises about 14% of the population, compared to roughly 2% who are two standard deviations below the mean and have mild intellectual disabilities The shortage of services for this sizable, high-need group is a cause for concern and served as the impetus behind expanding access to support and intervention programs.
Established in 1982, Threshold was one of the first programs of its kind and was widely recognized as highly innovative It offered young adults who were ineligible for or unlikely to succeed in traditional college settings the opportunity to live on a college campus, take courses designed to teach life and vocational skills, explore career options, make friends, and prepare for maximally independent adult life Created at a time when students with disabilities were typically separated from their typically developing peers, Threshold was organized to mirror those separate experiences Students could use university facilities and live in on‑campus dorms, though in buildings that were separate from undergraduates, which meant they shared the campus resources while maintaining separate housing.
40 more access to a college experience than would be possible for them almost anywhere else at the time However, the rest of a Threshold student’s experience remained separate from the undergraduates
Some aspects of the Threshold experience remain distinct from the undergraduate experience, while others have become more integrated Threshold students still enroll in a curriculum separate from University undergraduate coursework, are taught by their own faculty, and live in dorms separate from undergraduate housing The resident staff operate independently from the undergraduate residence life office and offer activities exclusive to Threshold students Over the last eight years, these dynamics have continued to evolve.
Threshold students now have unprecedented access to mainstream university life at Lesley, with four students earning NCAA waivers to play Division III sports on Lesley teams Many students participate in Lesley clubs and intramurals, and one or two students each year take undergraduate college courses alongside their peers, although these programs operate without formalized supports from Threshold.
Threshold accepts about 24 new students each year into its two-year residential program, and after completing the second year, students may choose a third year on campus (Bridge Year) or enroll in the post-graduate Transition Year program, which offers vocational and independent living supports while living in community apartments Typically, around 52 students live on campus annually, with an additional 10–15 enrolled in Transition Year In the first year, students attend classes three days a week and participate in internships two days a week, while second-year students attend classes two days per week.
Bridge students attend one day of classes and work four days per week, with internships occurring three days per week; all classes are separate from undergraduate courses and enroll only Threshold students, and all internships are unpaid Transition students have two classes per week, meet at least weekly with advisors who help them achieve independent living goals in their apartments, and regularly work one-on-one with a Threshold employment coordinator to find paid jobs.
Threshold remains distinct among college-based postsecondary programs for young adults with ID/DD because of its residential model for all students, access to federal financial aid, easy access to extensive public transportation, comprehensive post-graduate services, strong fundraising capacity, NCAA sports participation, and its focus on students with IQs in the 70–85 range The program’s mission is generously supported by alumni parents, who are among its largest donors and who help govern the program through service on the Parent Advisory Board Over the years, Threshold has refined its curriculum and programming, pursued greater inclusion of its students in Lesley University activities, and invested heavily in infrastructure and in developing supports for graduates Despite these updates, the fundamental model of Threshold has remained fairly stable since its inception, even as the broader field has experienced rapid change.
All participants were parents of graduates of the Threshold Program at Lesley University Parents were determined to be eligible if they are available for an in-person,
Parents of alumni who graduated from the program between 2008 and 2014 (inclusive) were invited to participate in the study through phone or Skype interviews This graduation window was chosen because it is recent enough for parents to recall trends toward inclusive postsecondary education (PSE) experiences that began with the Higher Education Opportunity Act (HEOA) in 2008, while also broad enough to allow reflections on program outcomes several years after graduation Parents of alumni who were still enrolled in Threshold’s post-graduate programs at the time of data collection were not eligible to participate.
Participants were recruited from among all parents of alumni who graduated from
2008 to 2014 for whom contact information was known (156 households) Potential participants were sent an invitation to participate (Appendix A) by mail and email
Interested parents who were selected to participate were sent a follow-up email
(Appendix B) with additional information about the study Interested parents who were not selected were sent the alternate follow-up email in Appendix C
Twenty-five parents responded to the recruitment letter, with five offering to be interviewed either together or separately with their spouses, yielding up to thirty potential subjects The study used maximum variation sampling to capture a wide range of experiences The final participant group consisted of seventeen subjects, reflecting the greatest possible diversity among both the participants and their sons or daughters who were graduates, based on those who responded to the recruitment letter The researcher purposively selected these participants to maximize variation and information richness for the qualitative study.
From among 43 interested respondents, the sampling method gave priority to those who increased the sample's diversity, followed by the order in which they replied Only one parent per graduate could participate If a respondent suggested interviewing themselves and/or their spouse (together or separately), the researcher asked them to designate who should be interviewed, and only that parent was included in the sampling process.