Feature Issue on Inclusive Higher Education for People with Intellectual, Developmental, and Other Disabilities
Making it Work, Higher Education for All
In special education, inclusion often ends with high school. Despite the expansion of inclusive higher education programs in the last decade, less than one-third of students with IDD enrolled in college up to eight years after exiting high school (Newman, et al., 2011). This enrollment gap is likely due to inadequate availability, accessibility, and diversity of inclusive higher education programs; poor high-school academic preparation; inability to cover college tuition (Grigal et al., 2018; Johnson, & Nord, 2010); and negative attitudes of college administrators and faculty toward students with disabilities (Gibbons et al., 2015; Jones et al., 2016).
Thus, inclusive higher education program development – although very feasible – is often not easy. There are some variables necessary for success that we can share based on our experiences developing programs at the University of New Hampshire and the University of Maryland. There are several similarities between these two programs, particularly in the initial development process. Both institutions are their state’s largest land grant state institution, which comes with the power, status, and influence, as well as the complicated levels of administration and bureaucracy. Both institutions applied for the large federal, five-year Department of Education Transition Programs for Students with Intellectual Disabilities (TPSID) grant award and did not receive it.The process helped to fuel motivation and allowed program developers to capitalize on planning and partnerships already in place. With the growth of both internal and external partners, both universities were able to present an ideal addition to their campus’ mission to expand diversity, equity, and inclusion (DEI) initiatives, which often leaves disability out as a representative component. In both institutions, program leaders were able to manage this momentum to embed program structures that are inclusive, recognized and supported by their institutions, and continually growing.
Case 1: University of New Hampshire
The evolution of the UNH-4U model illustrates the transformational thinking, and incremental milestones of any major systems change work.
Lead-up to launch
The first serious discussions about inclusive higher education for students with IDD in New Hampshire started soon after the state’s Medicaid Infrastructure Grant ended, and just as the Workforce Innovations Opportunity Act (WIOA) passed in 2014. State partners and employment champions had already established a multi-site, statewide network for Project Search, a workforce development strategy piloted at the University of Cincinnati for young adults with IDD in healthcare occupations. Under WIOA, New Hampshire Vocational Rehabilitation (NHVR) was charged with offering pre-employment transition services for students with an individualized education program (IEP) or 504 plan, creating an opportunity to better connect measurable postsecondary outcomes that were planned for in high school to adult systems of support for career pathways. The initial round of TPSID funding from 2010 was well underway in other states, and more students and parents were voicing expectations for college. With WIOA emphasizing person-centered and comprehensive transition programs, the question became, how would a student with IDD access postsecondary training for careers that don’t neatly fit into a cohort or sector-based approach? The natural solution was the same as it has been for other high school youth: college.
In 2014, the UNH-Institute on Disability/University Center of Excellence in Disability (UNH-IOD/UCED) hosted a meeting that included the local and state systems of secondary and special education, vocational rehabilitation, postsecondary education, and adult long term support services. Excitement about early conversations with external partners lead to regular meetings with university departments, consistent with our land-grant mission of serving New Hampshire citizens. One of the earliest champions of the concept was the UNH Office of Community Equity and Diversity, which helped provide support for meetings and shared the concept of inclusive education with campus partners. This lead to a federal submission to the U.S. Department of Education for TPSID in 2015. Unfortunately, UNH was not selected.
Short on funding, but long on vision, the work advanced with volunteer stakeholders. UNH-IOD’s Janet Krumm Lecture Series unveiled the trailer of Dan Habib’s Intelligent Lives film, as well as keynotes by Micah Fialka-Feldman and Max Orland, a graduate from University of Delaware, who shared his life experience in college and spoke about the value of UNH offering such a model. A mini-grant from the National Think College Coordinating Center supported workgroups throughout the year, and a full-day retreat in 2017, which caught the attention of UNH Advancement, the university’s foundation office. That connection resulted in a $150,000 challenge grant in 2018 from the John Vance ACCESS fund. Use of the funding required us to raise money equal to the size of the award before it could be released. New Hampshire Vocational Rehabilitation committed $150,000, and the New Hampshire Council on Developmental Disabilities committed funds for development and sustainability, allowing the hiring of the project director, a program manager, and content experts to develop the program design. In spring 2019, a pilot program to test short-term experiences on campus was approved, but operations stalled the next year due to COVID-19.
The pandemic created an opportunity to pivot to remote delivery, removing barriers to transportation, and supporting students to continue to plan for their futures, while increasing their technical skills and resilience. The Bridges to College and Career Webinar Series bridged a gap and facilitated social and emotional connections between undergraduate students at UNH and students with IDD. Undergraduate students shared how much they benefited from the interactions, and two cohorts of trainees could now advocate for their career plans and navigate academic and assistive technologies for college life. In 2020, the second application for TPSID was submitted, and this time, it was approved for funding. The first full cohort started on campus in fall 2021.
Program of Study
Four students comprise the first UNH-4U cohort as former Bridges trainees. Three students live on campus, and the fourth commutes from a nearby family home shared with other UNH undergraduate roommates.
The program of study consists of four learner aims: credential attainment, competitive integrated employment, independent living, and social development. Students have dual connections with NHVR and Area Agencies. The coordinated approach supports students’ person-centered plans, informs the program of study, and braids intra-agency funding solutions for the cost of attendance and individual supports and services.
UNH-4U students register for 11 credits per semester of continuing education, in audit-mode, based on their area of academic and occupational direction. In our first cohort of four students, six colleges within the university include UNH-4U students in undergraduate studies. Academic coaching from fellow undergraduate students in the same areas of discipline reinforce instructional material and support social and academic success. In addition to coursework, learners have identified career and professional efforts applied through independent studies, practicums, and internship opportunities. Learning is validated through faculty established rubrics and assessments, and micro-credentials transferrable to business and industry to foster competitive integrated employment.
UNH-4U students can live on campus in residence halls or commute. They can request single or double occupancy rooms and are fully included in the array of residence life programming encouraged by resident assistants (RAs) and hall directors. A UNH-4U residence hall student assistant provides supports for independent living, while fellow students facilitate access to campus recreation, social events, clubs, and organizations. All UNH-4U students hire part-time hourly college students as Family Managed Employees (FMEs) through Participant Directed and Managed Services (PDMS) to work on goals and objectives specific to service plan agreements with Area Agencies, funded by the community care waiver.
Funding and Sustainability
Public and private resources fund program operations, the cost of university attendance, and the individual supports and services that facilitate academic success. The program receives federal funding from the 2020 Department of Education five-year TPSID award to incubate UNH-4U at the University of New Hampshire and for expanding IPSE in other parts of the state. NHVR contributes core funding and matching through fee-for-services dollars through Individual Plans for Employment. Cost of attendance consists of tuition and mandatory fees, which NHVR supports for income eligible students. Students and families are responsible for covering the costs of meal plans and housing. Area Agencies provide individual supports and services through the FMEs. Securing funds already invested in employment and independent living was essential to program sustainability.
Students browse in a University of Maryland bookstore.
Case 2: University of Maryland, College Park:
The State of Maryland had a big programming gap for its young adults with IDD who wanted to pursue higher education. Maryland has a robust system of college-based transition programs for students with IDD who were still receiving education services through their local school systems to attend a dual enrollment-type program at local community colleges until they could exit the school system at age 21. But for those who left the school system and wanted to go on to college for a postsecondary experience, we had little to offer. Programs had tried and failed or were struggling to get started, particularly once the pandemic hit. As a faculty member in the College of Education, and someone who had provided technical assistance to IPSE programs across the country, I knew modelling it at our leading state institution was the best course, even without federal funding.
Being housed in the Center for Transition and Career Innovation at UMD – with a mission to support all our state agencies charged with serving people with disabilities, and particularly transition-aged young adults—the University had access to already-established external partners. A sea change in university leadership installed inclusive-minded leaders in critical positions, and TerpsEXCEED (Terps Experiencing College for Education and Employment Discovery) was born.
Program of Study
We found a home in the Office of Extended Studies, responsible for all non-traditional academic programming at UMD. They created our academic unit, the billing and administration, and will administer the credential upon completion. The College of Education’s Disability Studies Minor Program is our academic and advising home, and we formed a partnership with the Career Center in undergraduate studies. Because the goal from inception is full inclusion, TerpsEXCEED students follow the same path as other UMD students. They take a minimum of 12 credits for full time, including a College Success class similar to what all students take in their major. They choose undergraduate courses (often for audit) that match their career interests to create a focus area, and take a 3-credit Internship and Career Development course in the UMD Career Center that involves internship and work-based learning experiences. Students join clubs, such as yoga, musical theater, or sports club management. All this culminates in a certificate from the Office of Extended Studies that highlights the students’ focus area of study, work experience, and commitments on campus. The certificate conveys to employers the knowledge and skills gained and their accomplishments.
The true inclusion test is the level of natural engagement the students have across all aspects of campus. Staff support includes some direct instruction and goal development, but their work is mostly behind the scenes; meeting with course instructors and campus personnel to provide support and training, recruiting and training mentors, leading interagency planning meetings for each student, developing programming, and marketing. The most natural supports on a college campus are fellow students, who can act as guides, while also developing friendships. To facilitate that experience, we have a three-credit Peer Mentoring and Certification course taught in the Disability Studies Minor program. Through coursework, research, and field work – which involves the direct social and academic support to the TerpsEXCEED students – the peer mentoring students also earn a Level 1 International Peer Educator Certification through the College Reading & Learning Association. They can earn a Level 2 Lead Peer Mentoring certification, where they manage a circle of support – either social or academic – around each student. An unexpected outcome has been the positive effects on the mentors, who come from all academic disciplines and who will leave the University of Maryland to enter a wide range of careers with a new set of skills and attitudes and a better understanding of diversity, equity, and inclusion.
Another component of campus life for college students is the on-campus living experience. In our first year, one student chose to live on campus in a dorm. Our Residence Life staff is committed to giving our students the best – and most typical – dorm living experiences and allowing us to provide training to resident directors and assistants. Dining halls welcome our students and allow peer mentors without dining plans to join our students during mealtimes.
Funding and Sustainability
As a program in its first year, financial sustainability is paramount and still developing. Alumni donations, extra fees covered by private-pay families, student scholarship funds established through our University of Maryland Giving Day funds, and short-term state funding from our Developmental Disabilities Council and Developmental Disabilities Administration (DDA) make up our current resources. We are beginning the process of partnering with our Maryland Division of Rehabilitation Services and State DDA for vocational rehabilitation, tuition, and waiver access. Our students are accessing their Family Supports Waivers through DDA for personal supports that assist with academic and independent living skills development. Once a student is 21, they can access community supports for employment. We are developing a long-term plan for pursuing support from the University and the Maryland state budget.
The ability to search for funding options is only possible if the university recognizes the positive impact such an initiative has on its own students, faculty, staff, and the broader community. Luckily, TerpsEXCEED has that support from the University of Maryland.
It takes visionary and adaptive leadership to bring these programs to fruition. Buy-in must come from a diverse cross-section of academia, student life, administration, vocational rehabilitation, service providers, advocates, secondary education, students, and families, at multiple levels. The model requires each stakeholder to think through how IPSE fits with their specific organizational mission and how best to support feasibility and sustainability. One partner must step up with the first investment, and this encourages others. Higher education professionals may lack experience with young adults with IDD and want support and technical assistance. Their expertise is essential for anticipating important university procedures, timelines, and approvals to reduce administrative hassles that may discourage buy-in. Early and small successes are important to celebrate through testimonials and metrics to confirm the model is working and to drive continuous growth. When people are witnessing and investing in student success, transformational systems level change is evident.
The critical need for considering inclusive higher education at earlier stages is an even more important lesson. Imagine how different the high school years would look if IEPs, from the age of 14, included this academic goal. Teams would align high school experiences and transition support services to create an easier path to enrollment, and to a better future.
The Nuts [and] Bolts of Inclusive Higher Education Programs | Author Amy Dwyre D’Agati hosts a video discussion about inclusive college programming for students with intellectual disability. Panelists discuss housing, access to courses, employment and more.
Gibbons, M. M., Cihak, D. F., Mynatt, B., & Wilhoit, B. E. (2015). Faculty and Student Attitudes toward Postsecondary Education for Students with Intellectual Disabilities and Autism. Journal of Postsecondary Education and Disability, 28(2), 149-162.
Grigal, M., Hart, D., & Papay, C. (2018). Inclusive higher education for people with intellectual disability in the United States. In People with Intellectual Disability Experiencing University Life: Theoretical Underpinnings, Evidence and Lived Experience (pp. 69-97).
Brill. Johnson, D. R., & Nord, D. (2010). Students with Disabilities in Higher Education: Participating in America's Future. Impact, Institute on Community Integration University of Minnesota, 23 (3), Autumn/Winter 2010/11, 2-3.
Newman, L., Wagner, M., Knokey, A.-M., Marder, C., Nagle, K., Shaver, D., Wei, X., Cameto, R., Contreras, E., Ferguson, K., Greene, S., and Schwarting, M. (2011). The Post-High School Outcomes of Young Adults ith Disabilities up to 8 Years After High School: A Report From the National Longitudinal Transition Study-2 (NLTS2). Menlo Park, CA: SRI International.
Sheppard-Jones, K., Kleinert, H.L., Druckemiller, W., & Ray, M (2015). Students withIntellectual Disability in Higher Education: Adult service provider perspectives. Intellectual and Developmental Disabilities, 53(2), 120-28.