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Postsecondary Education for People With Intellectual Disability: Current Issues and Critical Challenges Meg Grigal, Debra Hart, and Cate Weir
Abstract Increasingly, people with intellectual disability are seeking, accessing, and benefiting from higher education. This article presents an overview of current legislative and policy issues as they related to postsecondary education for people with intellectual disability, including the Higher Education Opportunity Act, the Americans with Disabilities Act, and state vocational rehabilitation program policies. Policy actions are suggested. In describing existing and emerging practices, critical issues and future challenges are reviewed by the authors. Finally, current research on the impact of postsecondary education on the systems and people involved is shared and recommendations for future areas of exploration are provided. Key Words: higher education; Higher Education Opportunity Act; Americans with Disabilities Act
Inclusive higher education, is it a new idea? Not really. It is just an idea whose time has come. Thirty-three years ago, Larry Jones and Randi Moe wrote, ‘‘adults with [intellectual disability], like others, may enter college programs to prepare for a specific career, to obtain a basic educational or adult living skill, which they have yet acquired, for continuing or leisure education, or simply because it seems like the thing to do for young adults’’ (Jones & Moe, 1980, p. 59). These prophetic words have now become a reality, as greater numbers of people with intellectual disability (ID) are seeking access to higher education (Carroll, Petroff, & Blumberg, 2009; Grigal & Hart, 2010; Kleinert, Jones, Sheppard-Jones, Harp, & Harrison, 2012). What these experiences consist of and lead to are issues driving considerable interest in current policy, practice, and research in inclusive higher education. This article will present an overview of current legislative and policy issues, existing and emerging practices, and advances in research on postsecondary education (PSE) for students with ID. 50
The Current State of Legislation and Policy on Postsecondary Education for People With Intellectual Disability Education legislation and policy sets the stage for most practice and research, determining the direction of funding, the parameters of services, and, in many cases, opening new paths to be explored. Legislation at the federal level, as well as federal and state policies, has impacted the current status of PSE for students with intellectual disability (ID).
Higher Education Opportunity Act The enactment of the Higher Education Opportunity Act (HEOA) (P.L. 110–315) in 2008 that reauthorized the Higher Education Act of 1965 is likely the most impactful piece of recent legislation. First, the HEOA of 2008 defined for the first time in higher education legislation the term ‘‘intellectual disability.’’ This Act defined intellectual disability as a student (A) With a cognitive impairment, characterized by significant limitations in
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(i) intellectual and cognitive functioning; and (ii) adaptive behavior as expressed in conceptual, social, and practical adaptive skills; and (B) Who is currently, or was formerly, eligible for a free appropriate public education under the Individuals with Disabilities Education Act.
Second, the Act created a new category of Title IV eligible higher education program, called a Comprehensive Transition and Postsecondary Program (CTP) that would allow eligible students with ID access to three forms of federal student aid (Federal Pell Grants, Federal Supplemental Educational Opportunity Grants, and Federal WorkStudy funds) but not student loans (Boyle, 2012). CTP supports students with ID who are seeking to continue academic, career and technical, and independent living instruction at an institution of higher education in order to prepare for gainful employment, and requires that at least half of each student’s program consists of coursework and other activities with students without disabilities (Authority: 20 U.S.C. 1091, 1140). Third, the HEOA also waived some previous qualification requirements for federal student aid for students with ID attending an approved CTP, such as having to obtain a high school diploma or General Educational Development (GED) diploma, and the intent to matriculate and earn a standard degree or certificate. Federal student aid had approved 15 institutions of higher education as CTPs in the United States (for current listing of approved CTP institutions, see http://studentaid.ed.gov/eligibility/intellectualdisabilities). Finally, the HEAO authorized support for program development and expansion in the form of model demonstration projects, and this support was subsequently funded by Congressional appropriation (Lee, 2009). In 2010, the Office of Postsecondary Education (OPE) awarded grants to 27 institutes of higher education (IHE) to fund model demonstration projects (referred to as Transition and Postsecondary Education Programs for Students with ID [TPSID]) in 23 states, and created a National Coordinating Center. The intent of these funds was to promote the successful transition of students with ID into higher education and to enable IHEs to create or expand high quality, inclusive-model comprehensive transition and postsecondary programs for students with ID. M. Grigal et al.
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The Americans with Disabilities Act Amendments (ADAA) and Section 504 of the Rehabilitation Act While neither the Americans With Disabilities Act Amendments Act (ADAAA), nor Section 504 of the Rehabilitation Act (currently subsumed in the Workforce Investment Act) address students with ID specifically, both laws prevent discrimination based upon disability in institutions of higher education and therefore impact students with ID who are attending publicly funded colleges and universities. Section 504 of the Rehabilitation Act of 1973 protects the rights of people with disabilities to participate in or benefit from federally funded programs, services, or other benefits. The Americans With Disabilities Act (ADA), initially passed in 1990, requires persons with disabilities who are ‘‘otherwise qualified’’ be provided an equal educational opportunity. Together, these laws assure equal access for students with disabilities, including those with ID. The Americans With Disabilities Act Amendments Act (ADAAA) of 2008 also expanded the ADA’s definition of ‘‘disability’’ that broadens the scope of coverage under both the ADA and Section 504 of the Rehabilitation Act. Under the ADAAA, major life activities now include learning, reading, concentrating, thinking, communicating, and other activities. The changes to the statute and regulations clarify (a) which individuals have a disability entitled to protection under the ADA and Section 504, (b) which individuals are entitled to accommodations, and (c) how those determinations are made and by whom (Association on Higher Education and Disability [AHEAD], 2012). This updated version of the law also supports the use of less restrictive postsecondary disability documentation requirements (AHEAD, 2012). Prior to these amendments, substantiation of a student’s disability and requests for particular accommodations relied primarily upon clinical/diagnostic evaluations or psychoeducational testing. The new AHEAD guidance departs from these previous practices and suggests that the primary form of documentation should be student self-report, with observation and interaction, and information from external or third parties used only as secondary sources of documentation. If the new documentation guidance is embraced and implemented in the field, it could lead to a less challenging process for all students with disabilities, including those 51
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with ID, in documenting disabilities, a change that would foster a more accessible environment in postsecondary education (Americans with Disabilities Act Amendments Act [ADAAA], 2008; AHEAD, 2012).
The Individuals with Disabilities Education Act (IDEA) Dual enrollment programs, in which secondary students take college classes while they are still in high school, have historically been seen as an education option for high school students in advanced placement courses. However, these programs are becoming more common for all youth, both with and without disabilities. Fiftythree percent of all two-year and four-year Title IV eligible degree-granting postsecondary institutions in the United States reported high school students taking courses for college credit within or outside of dual enrollment programs (Marken, Gray, & Lewis, 2013). For those students on IEPs, the IDEA impacts the provision of these services in postsecondary education settings. Increasingly, youth with ID are receiving their first postsecondary education experience in a dual enrollment program as part of the transition services in their IEP (Grigal, Hart, & Weir, 2012).One third of the PSE programs nationwide and one quarter of the students receiving PSE services in the TPSID programs are identified as dually enrolled students (National Coordinating Center Annual Report, in press; Think College, 2013). Little guidance is available in the IDEA on the establishment and implementation of dual enrollment programs, thus the focus of services varies significantly across states and school systems. In some cases, school systems use these programs as out-of-district placements (Grigal & Hart, 2010) and in others, costs will be shared between the school system and the college (Conroy, Hanson, Butler, & Paiewonsky, 2013). In a number of states, local schools systems balk at the use of IDEA funds to support access to college as a transition environment. However, in most cases, college-based transition services not only meet the requirements for Least Restrictive Environment (LRE), but exceed the level of LRE that could be attained by provision of services in a high school building. Transition services are, however, conceptualized in terms of secondary and not postsecondary structures and environments, creat52
ing challenges for practitioners in dual enrollment programs. Two Additional Implications of the 2004 Amendments to IDEA Pertaining to Postsecondary Education for Students With ID. The first is the use of the Summary of Performance, a required document for all special education students graduating with a regular diploma or aging out of school under IDEA 2004. Although not yet widely established or supported by the receiving institutions of higher education, this IDEA-required documentation may be used to help inform disability documentation in college (Shaw, Keenan, Madaus, & Banerjee, 2010; Madaus & Shaw, 2006). Second, 2004 Amendments created federal requirements regarding the collection of in-school transition data (State Performance Plan Indicator 13) and postschool student outcome data (State Performance Plan Indicator 14). The increased participation of students in PSE both during and after their secondary school experiences can and should be captured and reflected in the states reporting these data.
National and State Vocational Rehabilitation Policies and Practices As more evidence emerges linking PSE experiences to employment outcomes (Smith, Grigal, & Sulewski, 2013; Migliore, et al., 2010) some states have created partnerships between IHEs and the state department of rehabilitation (Thacker & Sheppard-Jones, 2011) to support greater access to PSE for youth with ID. One such partnership, College to Career (C2C), began in 2010 in California as a collaboration between the California Community Colleges Chancellor’s Office working with the Department of Rehabilitation (DOR) and the UCLA Tarjan Center. C2C involved five pilot programs funded by California’s DOR to provide youth with ID and autism access to higher education and vocational training. Students are enrolled for three years and receive supports to be successful with coursework, and to participate in activities on campus such as career exploration, work experiences, and internships. While vocational rehabilitation (VR) support of PSE access is still greater for youth with disabilities other than ID (Grigal, Migliore, & Hart, in press), this may begin to change as further evidence of improved employment outcomes emerge.
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Accreditation and Credentialing. The credentials provided by postsecondary education programs vary widely in their attributions and authority and there is no existing program accreditation entity. Accreditation standards and an accrediting body will need to emerge to provide assurance of quality of service and outcomes for students with ID. In addition, the current and emerging programs will need to focus on the development and implementation of high quality credentials that are considered legitimate and meaningful to other institutes of higher education and to employers. Funding. Currently the Office of Postsecondary Education model demonstration funding is the only federal funding to support program development and evaluation. Future funding will be needed to expand existing program options and to ensure that adequate evaluation efforts are conducted. State Funding. While a handful of states include support for PSE in their state budgets, most do not. For current efforts in program proliferation to be sustained and for future efforts to make headway, states must begin to address the funding of these programs in the same manner that other higher education program funding is addressed. Enhanced Partnerships Exploring PSE as a Path to Employment. At this time, many PSE initiatives are operated outside of the existing Employment First initiatives. Future efforts should be aimed at ensuring that PSE is included in new initiatives like the current National Governors Association campaign to increase employment of people with disabilities. State VR agencies should begin to capture and reflect on the outcomes of the pilot or model demonstration programs that allow VR support of PSE experiences for students with ID. Engagement of Higher Education Initiatives. Many states have convened state-level strategic planning teams to enhance collaboration between organizations to improve access to higher education for students with ID. The sustainability of these efforts will require these groups to tap into existing higher education organizations that focus on increased access to higher education for other marginalized groups such as Lumina, Achieving the Dream, and the National College Access Network. Regulatory Language Reauthorization of IDEA. Future reauthorizations of IDEA should include language that recognizes the existence of collegebased transition programs and provides guidance regarding the desired program components and student outcomes that align with existing HEOA requirements. Without such guidelines, school systems will continue to struggle to translate the meaningful, socially integrated transition experi-
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ences provided on a college campus for youth with ID into the standard IEP framework used to guide the delivery of secondary special education services in high school settings (Grigal, Hart, & Lewis, 2012).
Current Postsecondary Education Practices for People With Intellectual Disability Postsecondary education is a relatively new arena for students with ID that is characterized by a wide range of practices and services as well as an evolving vocabulary. This disparity is evident at even the most fundamental level in determining what is meant by postsecondary education for this student population. Some practitioners may describe any type of experience that occurs on a college campus as postsecondary education, even those that include little or no course access or instruction. For the purpose of this article, postsecondary education for students with ID refers to a student’s academic and social participation in a two- or four-year accredited degreegranting college or university. Another term that currently carries with it different connotations is the use of ‘‘program’’ when referring to postsecondary education options. While this term may seem to describe only those experiences that are not authentic or inclusive when applied to the college education of students with ID, the term is really much more broad and generic. Program is the term used in the HEOA to define the course of study and to set out guidelines of what must be included so that students are eligible for financial aid, which is the same way the term is used to describe any college student’s course of study. A program for students with ID is simply a formal arrangement of services and supports that create access to postsecondary education for students with ID. It is not attributed to any model, setting, structure, or approach to service delivery. A program is also not precluded from being totally inclusive and having available a full complement of services that are based on individual student need and choice in authentic, inclusive college settings, although some programs are structured in that fashion. Finally, the term is not meant to imply any value, philosophy, ideology, or importance. This confusion in terminology is evidence of the current lack of established practices and guidelines for PSE for students with ID. As 53
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colleges and universities began to offer access to higher education for students with ID, programs have been developed without any established guidelines for standards or quality. Each program set its own direction and determined its own standards (Neubert, Moon, Grigal, & Redd, 2001). Early programs resembled special education or adult disability services much more than typical higher education, usually because the program developers had a background in special education, rehabilitation, or adult services. As a result, many programs most often focus on independent living skill development and employment, and to a lesser extent on academics and social skill development (Grigal, Hart, & Weir, 2012; Papay & Bambara, 2011). In addition, there is a wide range of programmatic structures and policies, and disparity in the degree to which they align with the host IHEs infrastructure. Finally, there are significant differences in the level of academic access and campus membership that students experience. The lack of guidance and policies for developing inclusive PSE options has begun to change, however. Guidance is included in the HEOA of 2008 as well as the recently developed Think College Standards for Inclusive Higher Education (Grigal, Hart, & Weir, 2011). Recent literature reflects emerging practices for postsecondary education programs for students with ID (Grigal, Hart, & Weir, 2012; Kleinert, Jones, Sheppard-Jones, Harp, & Harrison, 2012; Papay & Bambara, 2011). The Think College Standards identify standards, quality indicators, and benchmarks in eight areas: Academic Access, Career Development, Campus Membership, Self-Determination, Integration with College Systems and Practices, Coordination and Collaboration, Sustainability, and Ongoing Evaluation (see Figure 1; Grigal, Hart, & Weir, 2011). Using the eight essential areas of quality practice suggested by Grigal, Hart, & Weir (2011), the following sections provide a brief overview of what is known in each of these areas about promoting student skill development and the programmatic infrastructure necessary for student growth and skill development to occur, be sustained over time, and result in desired student outcomes.
Student Skill Development Academic Access. Currently, the majority of students with ID attending college do so as nonmatriculating students, and will not earn a 54
degree upon completion of the program. They often are registered in a special student or audit status. Wide variability exists in terms of access to college courses—from full access to any course in the college catalogue to access only to those classes that are part of a specially designed curriculum for students with ID. The majority of PSE programs support students with ID to participate (through audit or for credit) in one or two college courses per semester, together with specially designed classes only for students with ID (Grigal, Hart, & Weir, 2012). A common support utilized in many postsecondary education programs are use of peer mentors, educational coaches, or ambassadors, who help students navigate courses and other campus activities (Jones & Goble, 2012; Blumberg & Daley, 2009; Carroll, Petroff, & Blumberg, 2008; Hart, Zimbrich, & Parker, 2005). In some programs these are paid positions, however, it is more prevalent for these to be unpaid volunteer, practicum, or service learning opportunities (e.g., teacher preparation, rehabilitation counseling, school psychology). Some students also receive accommodations in their classes that are coordinated through the college or university Disability Service Office (DSO), such as interpreters, extended testing time, note takers, technology, etc. If students with ID are participating in a program of the college, they are eligible to receive reasonable accommodations for their disability while in class or at other campus events. Students are not eligible, however, for modifications to course content or expectations if they are taking the course for credit. Best practice suggests that if students need supports above and beyond reasonable accommodations, the extra supports are provided through the program, but reasonable accommodations for disability are still arranged for through the DSO. DSOs sometimes question their role in working with nonmatriculated students with ID, so this is an area where respectful collaboration and conversation is required. When appropriate accommodations are paired with individualized supports, students with ID can be very successful in academic classes in college. Career Development. People attend college for many reasons but one reason cited often is to get a better job and earning a living wage. Almost two-thirds of all jobs require skills associated with at least some education beyond high school (Carnevale & Derochers, 2003). This is no
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Figure 1. Data collection techniques used in TPSID research. different for individuals with ID. Unfortunately, students with ID have some of the worst employment outcomes of all disability populations (Wagner, Newman, Cameto, Garza, & Levine, 2005). The HEOA was very clear that a postsecondary education program for students with ID must include a focus on career development and, more specifically, gainful employment. The law further stipulates that the employment must be in settings with individuals without disabilities. Programs that seek to ascribe to those guidelines focus on providing students with opportunities to gain the knowledge and skills needed to gain a job after completion of the program. These opportunities include both paid and unpaid work experiences and internships throughout the student’s course of study. PSE programs use a range of practices to support positive employment outcomes, including person-centered planning to help with identification of career goals, work-based learning plans, access to job coaches and developers, job shadowing, paid and nonpaid time-limited internships, work study, apprenticeships, service learning, and on/off-campus integrated competitive employment. Some PSE programs have developed a strong partnership with their state VR agency. The VR M. Grigal et al.
agency may pay for tuition, fees, or other services with the goal of integrated competitive employment either prior to exiting the PSE program or upon exit (e.g., Hawaii, California, Washington, Ohio). Still others are forming or joining Business Leadership Networks, Chambers of Commerce, and Rotary Clubs. Self-Determination. Higher education provides all students with a rich opportunity to learn a wide range of skills, including self-determination (Pascarella & Terenzini, 2005). College students not only gain factual knowledge, they also acquire a range of self-determination and soft skills (e.g., self-advocacy, problem solving, self-monitoring, goal setting, choice making). A college campus offers a rich but somewhat protected environment for young adults to practice those skills related to self-determination. Time management, self-advocacy, choice-making, and understanding consequences of those choices are all daily experiences for college students. College students with ID can and do experience growth in these areas, if the program provides opportunities to practice and develop these skills. Programs that value selfdetermination empower students to be involved in and take control of establishing their personal goals, reviewing and discussing them regularly, 55
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and advocating for necessary accommodations and technological supports. Campus Membership. PSE programs vary in the range of supports they offer and policies they have established that enable students to participate in all aspects of campus life (e.g., college graduation and convocation ceremonies, student government, clubs, Greek system, dormitory living where available, student union, gaming, athletic center, cafeteria, library, sport events and teams). Participation in or access to all aspects of campus life lends itself to a truly authentic college experience. Some postsecondary education programs may limit a student’s access to certain campus activities (e.g., on-campus housing) based on perceived safety or liability concerns (FialkaFeldman, 2013). However, it is the social connections made in college that often lead to employment opportunities and community membership once students have completed college.
Programmatic Infrastructure For the previously described practices to implemented and sustained over time, IHEs must also create interdependent procedures and systems within the institution that enhance coordination, produce accountability, and ensure sustainability of services. Alignment With College Systems and Practices. There are a wide variety of existing resources, activities, practices, policies, and structures that already exist in an IHE to ensure that the college or university operates smoothly, is sustainable, and assists students in their academic and nonacademic pursuits (e.g., registration process, orientation sessions, disability services, advising structure, graduation/convocation ceremonies, courses, code of conduct, student government, athletic facilities, student union, governance structures). The more aligned with existing structures, policies, and services a postsecondary education program is, the greater the likelihood that the initiative supports students in inclusive academic access and authentic campus membership. Also, a PSE program that is integrated into the infrastructure of the college or university is much more likely to be aligned with the tenets stipulated in the HEOA of 2008 and the criteria for a Comprehensive Transition Program. Programs that are established as a true part of the college, with the same systems and practices whenever possible, are also more likely to be sustained over time. Overall, aligning with existing IHE systems and practices is cost 56
efficient, creates a more authentic college experience, and is much more sustainable. Coordination and Collaboration. Many postsecondary education programs have collaborative relationships with outside agencies and organizations that also serve individuals with ID. Typical partners include vocational rehabilitation, local school districts, and community-based developmental disability services (Grigal, Hart, & Weir, 2012). These strategic partnerships assist with coordination of PSE program services, maximize effective use of limited resources and support the long-term sustainability of the PSE program. Working collaboratively with existing key departments and services within the college or university can have a similar positive impact on the effectiveness and sustainability of the program. The programs should work within existing systems, including the registrar, student affairs office, financial aid services, academic advising, health and career services, IT support, maintenance, and so forth. PSE program personnel can contribute to the operation of the IHE by participating in faculty/staff governance structures and/or committees. Sustainability. Program sustainability should be kept in mind from the onset. As previously mentioned, the more aligned and integrated into the operations and infrastructure of the IHE, the greater the chances for sustainability. Programs that start out with grant or seed money often have difficulty diversifying their funding. To this end, many PSE programs have established an advisory or leadership team including representatives from the college (e.g., administrators, disability services, faculty, adult service agencies, local business leaders, workforce development providers, families, and students). These teams assist with marketing the PSE program and linking it to the larger community. Some PSE programs that are serving students who are still in high school have been able to move from grant funding to establishing a Memorandum of Agreement with a partnering school district that stipulates what aspects of the program will be funded or otherwise supported by the school district (Conroy, Hanson, Butler, & Paiewonsky, 2013). Some PSE programs have been successful in pursuing a wide range of other funding sources such as Medicaid waiver funds, VR, work-study, National Service grants, scholarships, and foundation funding. Diversified funding that does not exclusively depend on ongoing
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grants or high tuition rates charged to families and students is the goal in creating a sustainable college program. Diverse funding coupled with strong integration into the college campus culture are seen as key aspects of a sustainability plan. Evaluation. Regular collection and review of data on student activities and outcomes can form the foundation for continuous quality improvement of a program. Staff and administration can use these data to guide decisions about program effectiveness and needed modifications (Grigal, Dwyre, Emmett, & Emmett, 2012). Clear evidence of positive student outcomes such as enhanced course access, improved credential attainment, or increased employment rates can strengthen program longevity, as it is more difficult to close or cut a successful program. Data on program effectiveness can also aid in securing foundation funding or outside resources that will support the ongoing operation of the PSE program. A comprehensive evaluation plan should include data from key stakeholders such as students with and without disabilities, parents, faculty, DSO personnel, administration, and other relevant college or university personnel. Data should, at a minimum, be collected on student satisfaction, exit, and follow-up data; faculty, administrator, DSO, and adult human service agency personnel satisfaction and perspectives on the program; and family satisfaction with the program (Grigal, Hart, & Weir, 2011).
Actions Needed to Improve PSE Practices Given the paucity of data and information on successful evidenced-based practices in PSE for students with ID it will be imperative that individuals in the field continue to use and validate the Think College Standards. These standards, quality indicators, and benchmarks will require updating and refinement as the field evolves. Also, the evaluation data collected by the National Coordinating Center on the 27 TPSIDs funded in 2010 by the Office of Postsecondary Education will be invaluable in further development of the standards and, more importantly, in amassing a knowledge base on effective practices to inform the development or enhancement of postsecondary education options for students with ID. Along with further development of the standards and collection of an evidence base for them is the need for: M. Grigal et al.
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An increase in the number of authentic inclusive postsecondary education options for students with intellectual disability nationwide. We know that there are over 200 PSE programs for students with ID but that is an insufficient number compared to the number of IHEs that are available to the general population and the number of individuals with ID who desire a higher education. A widely accepted and operationalized definition of inclusion in higher education contexts. Some individuals believe that simply being on campus is ‘‘inclusion,’’ even if academics are provided through a separate course of study specially designed only for individuals with ID. Others would argue that inclusion is only achieved when students with ID are in typical college courses alongside students without disabilities and with other disabilities and they are supported, as needed, to participate in all other aspects of campus life. Increased focus on integrated competitive employment. Partnerships with the business community and workforce entities need to be forged to identify workforce needs in local communities and then work with IHEs on addressing these needs. Social network development during college and how to sustain it over time once the student has completed a college program. Some individuals with ID face very isolated lives when they finish college so there is an explicit need to make sure that students are connected to formal and informal activities and have a circle of support and friendship.
Current Research on Postsecondary Education for People with Intellectual Disability The growth and availability of higher education options for people with ID has not only increased opportunities for students with ID to access desired learning, but has also increased our capacity to conduct research on these experiences and the people and systems involved. Current research efforts are focused on a variety of topics and methodologies including secondary analyses of existing datasets, national surveys, surveys of stakeholders, analysis of data from the National Coordinating Center and TPSID model demonstration program, as well as more topic-specific or perspective-focused qualitative research.
Secondary Analyses of Existing Datasets Conducting secondary analysis to examine different aspects of transition and higher education for 57
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students with ID allows researchers to enhance our understanding of the impact of transition goals and expectations, and to examine available services that support access to PSE and employment. Some recent PSE studies have been implemented through secondary analyses of existing datasets, such as the National Longitudinal Transition Study-2 (NLTS2), the Rehabilitation Services Administration’s RSA 911 dataset, and the American Community Survey (Grigal et al., 2011; Grigal, Migliore, & Hart, in press; Migliore, Butterworth, & Hart, 2009; Papay, 2011; Smith et al., 2013). Because these types of studies do not reflect an intervention, they provide a reflection of existing practice that can serve as a baseline for what is happening in terms of PSE planning, program availability, access, and outcomes for people with ID. NLTS2 Studies. Papay (2011) analyzed data from the National Longitudinal Transition Study2 to examine the extent to which youth with ID were receiving seven best practices (youth involvement, family involvement, work experiences, life skills instruction, inclusion in general education, and interagency involvement) and which, if any, of these best practices were predictors of postschool outcomes, including postsecondary education for youth with ID. Papay found that youth with ID who were involved in their transition planning and who had higher levels of family involvement were significantly more likely to have attended college after high school. Further, parent expectations for employment and postsecondary education were some of the most important predictors of postschool outcomes. The issue of expectations was also examined by Grigal, Hart, & Migliore (2011), in another secondary data analysis of the NLTS-2 dataset. This study highlighted that the transition planning goals of students with ID tended to reflect low expectations, as they were more likely than students with other disabilities to have sheltered employment goals on their IEP and less likely to have goals to attend a two- or four-year college or be competitively employed. These low expectations showed a relationship with actual outcomes, as these students were less likely to attend college, vocational/technical school, or work for pay compared to other disability groups (Grigal, Hart, & Migliore, 2011). RSA 911 Studies. Another dataset that has been explored via secondary analysis is the RSA 911 dataset. RSA collects data on rehabilitation 58
outcomes and services provided at the individual level for anyone who has applied for or received vocational rehabilitation services. Grigal, Hart, & Migliore (in press) found that youth with ID were substantially less likely to participate in postsecondary education while in the VR system compared to youth with other disabilities. Participation varied substantially across states, and participation remained static, nationally, between 2006 and 2010. Related to this finding, Migliore et al. (2009) found VR support for access to postsecondary education may have important implications for future employment as youth with ID who exited the VR program after receiving postsecondary education services reported higher weekly wages compared to those who did not receive any postsecondary education services.
National Surveys Survey research has provided the field with a better picture of what PSE options for people with ID exist, their focus and services, and the types of IHEs providing these services. In 2008, Papay and Bambara surveyed 52 college-based transition programs in the U.S. for students with intellectual and developmental disabilities, ages 18–21. They found that most programs were operated by school districts, served a small number of students, and that most programs focused on employment, inclusion with same-age peers, independent living skills, and participating in college classes. The majority of programs were located on two-year or community college campuses (58%), with 42% located on four-year college or university campuses. Grigal, Hart, and Weir (2012) surveyed 149 programs in IHEs in 39 states that indicated that they served students with ID. Unlike the findings of Papay and Bambara (2011), Grigal, Hart, & Weir (2012) found that a majority of programs were hosted by four-year IHEs and programs ranged in age from less than one year to 35 years in existence. However, both studies reflected that the primary focus of the programs was not on academic access, but instead on independent living skills and employment. This finding, as well as the high degree of variability among programs, suggests that the experiences of students with ID differ in a number of important ways from the experiences of their peers without ID (Grigal, Hart, & Weir, 2012). Another recent national survey examined practices from the perspective of IHE Disability
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Services Office staff. Kardos (2011) surveyed members of the Association on Higher Education and Disability (AHEAD) to examine practices in supporting adults with intellectual disability (ID) to participate in regular college classes at two- and four-year colleges and universities. Findings revealed that small numbers of adults with ID were taking regular college classes at IHEs across the country and were using the same generic supports offered to any student with a qualifying disability through the disability services offices. These national surveys provide the field with specific information regarding the types of services and supports currently being provided to students with ID in IHEs. However, it is worth observing that none of these data are generally available via national datasets on postsecondary education, such as the National Center for Education Statistic’s Integrated Postsecondary Education Data System. Currently, the 2011–2012 Common Data Set, which is used as a guiding framework for higher-education data collection by entities such as Carnegie Mellon University, the College Board, Peterson’s, and U.S. News & World Report do not include disability-specific information, let alone information about the comparatively small population of students with ID (Grigal, Hart, & Weir, 2012). The inclusion of students with ID in higher education data collection and analysis will certainly be an issue that needs to be addressed in the future.
Research on Stakeholder Perspectives Families. One emerging theme related to family expectations for PSE is the influence of informed transition personnel on family knowledge and expectations (Griffin, McMillan, & Hodapp, 2010; Martinez, Conroy, & Cerreto, 2012). Two recent surveys conducted with parents of young adults with ID show that, while parents may desire PSE as an outcome, there is a significant lack of knowledge on the part of transition professionals regarding existing and available postsecondary education options (Griffin et al., 2010; Martinez, et al., 2012). Mock and Love (2012), in a statewide strategic planning initiative to identify stakeholder perspectives on higher education and students with ID, found that parents wanted more information much earlier in their child’s life. And, while parents wanted PSE for their children with ID, few believed or expected their children would attain that goal (Martinez et al., 2012). Some families report M. Grigal et al.
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prioritizing safety and employment over academic access (Benito, 2012; Griffin et al., 2010), though this may be more reflective of what professionals are emphasizing as important and possible. College Peers. A number of studies have focused on exploring the impact that students with ID have on their college student peers (Griffin, Summer, McMillan, Day, & Hodapp, 2012; May, 2012; Westling, Kelly, Cain, & Prohn, in press). Participation in college classes with students with ID may positively impact peers attitudes toward diversity (May, 2012). However, previous experience as well as gender may impact peers comfort level with students with ID (Griffin et al., 2012; Westling et al., in press). Peers who reported a greater comfort level with students with ID found more benefits associated with their inclusion on campus and perceived students with ID as having higher abilities (Griffin et al., 2012). College Students With ID. Mock and Love (2012) found that, overall, students with ID wanted to be the main contact with the college rather than their parents, to know that college was an option for them early on so they could advocate for a higher education, to have more access to inclusive college courses, and to be better prepared for college during their high school years. In a participatory action research study students with ID were lead researchers documenting their experience in higher education (Paiewonsky, 2011). They identified that they liked having a new identity as a college student rather than a special education student, appreciated the freedom being a college student afforded them on campus versus a more rigid high school schedule, enjoyed having access to very difficult courses compared to those in high school, were learning to take responsibility for themselves, and enjoyed being treated as an adult (Paiewonsky, 2011). Further, students in this study stated that their college experience would have been improved if they had access to more college classes tied to their career interest, the opportunity to talk to other students about courses before enrolling in them, more time on campus especially at night and over the weekend, and more strategies to make friends with other students (Paiewonsky, 2011). Higher Education Faculty. Researchers in a two-year certificate program at Trinity College in Dublin, Ireland conducted focus groups with college faculty who had students with ID who were auditing in their courses to identify their perspectives (O’Connor, Kubiak, Espiner, & 59
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O’Brien, 2012). Researchers found that the instructors who were motivated to include students with ID in their courses had a strong belief in social justice, were interested in learning how to teach a wider range of diverse student populations, and had the belief that students with ID had the right to attend and benefit (O’Connor et al., 2012). Additionally, faculty indicated that they had to differentiate their instruction and incorporate visual aids and effective ways of engaging students which overall made the course more accessible to all students (O’Connor et al., 2012). Mock and Love (2012) also interviewed faculty and found that they felt participation in higher education provided students with ID the chance to strive toward higher expectations and reach their potential. In addition, the inclusion of students with ID assisted colleges in meeting and expanding their diversity goals, and created beneficial mentor opportunities. Faculty expressed the need for research on effective practices, training in universal course design, and additional resources for accommodations.
to the Department of Education regarding effective models of practice. Research Conducted by TPSIDs Projects. In addition to the research by the National Coordinating Center, the faculty at many of the IHEs hosting TPSID programs are also involved in research activities. According to Hart and Grigal (2012), 16 TPSID sites are involved in 61 active research projects. Some of the topics being studies include mentoring, writing strategies, peer attitudes, faculty attitudes, mobility, and use of natural supports. As indicated in Figure 2, various methodologies are being employed to examine the characteristics and impact of PSE programs. The emerging studies from the TPSID projects will significantly enhance the existing body of research on PSE for students with ID and will provide the field with a rich and varied perspective on what leads to successful postsecondary access.
Recommended Future Research on Inclusive Higher Education !
Research on TPSIDs Model Demonstration Projects National Coordinating Center. As mentioned previously, National Coordinating Center is collecting and analyzing data on the 27 TPSID programs funded in 2010 by the Office of Postsecondary Education. The 27 programs served 470 students in 2010–2011 on 30 campuses, and 792 students on 41 campuses in 2011–2012 (during 2010–2011, 12 programs were in the planning phase). The NCC TPSID Annual Report (in press) provides descriptive data on the student characteristics (disability, race, prior education), course access, student advising, accommodations, employment, access to campus resources, student fees and tuition, paid and unpaid internships and employment, credential attainment, residential living, transportation, social participation, and student exit data. It also includes data on program costs and methods of funding, staff training, campus integration, code of conduct, internal and external partnerships, use of peer mentors, family outreach and involvement, and evaluation. The TPSID program data is being used internally by the TPSID projects to monitor and evaluate their practices and outcomes. It is being used by the NCC to evaluate the TPSID program as a whole and, ultimately, to make recommendations 60
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Study the Impact of PSE Practices on Outcomes. To date, there have not been any funded intervention studies. Intervention studies are needed to identify evidenced-based program components and models including policies and practices that directly impact successful student outcomes. Study the Impact of on K–12 and Transition Practices. As more students with ID seek to access PSE, research is needed on college-based transition
Figure 2. The Think College Standards for Inclusive Higher Education Conceptual Framework.
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programs that support postsecondary education access. Capture and Monitor Student Outcomes. Longitudinal data is needed on PSE and post-PSE outcomes, including student employment, community engagement, independent living, further education, and quality of life after college. Examine the Impact of Technology on Student Success. Emerging technological supports such as smart phones and other mobile devices, mixed reality environments, as well as distance learning merit further investigation. Include Students with ID in Large Datasets. The inclusion of disability-specific variables (including students with ID) into large-scale data collection efforts conducted by entities like the National Center for Education Statistics would allow for greater understanding of the experiences and outcomes of students with ID.
Conclusion The call to action issued by Jones and Moe in 1980 to provide access to non-specialized college education for people with intellectual disability has finally been heard. While inclusive higher education is still far from being an everyday practice, recent policy and legislative initiatives have expanded IHE options and advanced research, helping to skew the trend in a positive direction. Significant efforts on each of these fronts will be needed to ensure that inclusive higher education opportunities continue to expand and improve. Improved commitment and coordination between state and federal stakeholders and between K–12 and IHE systems must drive this progress. And when we direct our best professional resources toward the goal making inclusive higher education available to all students who desire it, then, and only then, will we be able to determine the true impact college may have for people with intellectual disability.
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Authors: Meg Grigal (e-mail:
[email protected]), University of Massachusetts Boston, Institute for Community Inclusion, 20 Park Plaza #1300 Boston, MA 02116; Debra Hart, University of Massachusetts Boston, Institute for Community Inclusion; and Cate Weir, University of Massachusetts Boston, Institute for Community Inclusion.
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