Advice

No Longer 'Falling Off the Cliff'

The Think College movement is providing degree options for students with intellectual disabilities

Adam Niklewicz for The Chronicle

November 10, 2014

When classes started this fall at Edgewood College, in Madison, Wis., one of the new students was an Internet celebrity: Noah Van Vooren. The previous spring, a video of Noah opening his college acceptance letter went viral; more than a million people have seen him celebrate his admission to Edgewood.

Noah has Down syndrome. He’s part of Cutting Edge, a program that aims to provide a college experience to people with intellectual and developmental disabilities. Every year, Edgewood admits a small cohort of such students who take courses both within their own group and within the broader Edgewood curriculum. They live on the campus. They work with peer mentors drawn from the student body. They learn from and teach each other how to be part of an inclusive community.

Programs like Cutting Edge provide a way for colleges to respond to what many disability advocates call "falling off the cliff." When a child is diagnosed with a disability, all kinds of government-support structures kick in to provide education, services, transportation, and health care. It’s often necessary to fight for optimal services, but the system is, at least, there.

But at age 22 (or in some states, 19), someone with a disability loses that infrastructure, and "falls off the cliff" into a much less organized world. Beyond the issue of finding new services, there’s just a fundamental question of what the disabled should do. School provides community along with education. Without school, many people with disabilities risk becoming isolated.

Increasingly over the last decade or so, colleges like Edgewood are trying to provide a higher education to people with developmental disabilities that can build on the good work done in secondary education. A project called Think College: College Options for People With Intellectual Disabilities—run out of the Institute for Community Inclusion at the University of Massachusetts at Boston—has been coordinating such efforts, building standards, and working with the government to provide more support.

Dedra Hafner, the founder of Edgewood’s program, started it in 2007 as a part of her dissertation research. She wanted both to study the process of inclusion and use that study as a way to prove that an inclusive program was viable for Edgewood. The pilot was a success; it’s now a sustained endeavor with a big impact on the campus and a growing national profile, thanks especially to students like Noah. This past summer, I met with Hafner and with one of her program’s students, Kathleen Coogan, to talk about Cutting Edge, its origins, results so far, and future challenges.

From the very beginning, Hafner said, she knew that most Edgewood students would be happy to help because they belong to the post-inclusion generation. They all started school after 1990, when the Individuals With Disabilities Education Act passed and transformed special education in elementary and high schools. These students grew up taking classes with, and getting to know, people with all types of disabilities. Colleges themselves, by comparison, have lagged behind.

When resistance to this idea came at Edgewood, it emerged out of the faculty ranks. It’s not that professors were opposed to having people with intellectual or developmental disabilities in their classes, but rather they were unsure how to make inclusion work with their usual practice. Those doubts are normal. Until you see it succeed, it’s hard to know what to expect as a teacher. Wisely, Hafner used her pilot program to bring some students to the campus, make the concept visible, and show it could work.

Coogan’s experience is a case in point. She has Down syndrome and went to a high school in Janesville, Wis., that had some inclusive education (though not as much as she would have liked). She has found Cutting Edge an empowering continuation of a track she was already on. Instead of falling off a cliff, she’s taking classes, working, and becoming an outspoken advocate both for the program and disability issues more broadly. The hardest part, she said, is figuring out how to share living quarters with three other students, a complaint one hears from plenty of neurotypical students as well. "There’s too much drama," she said, "but we also lean on each other."

In fact, the challenges of Think College programs like the one at Edgewood are of course not limited to social drama. All sorts of situations have cropped up—such as how to assist students with limited mobility or how to meet the need that some of the students have for work opportunities on the campus. Again and again, Hafner and her colleagues have developed community-based solutions that benefit everyone. For example, when a student had trouble moving around the campus fast enough to make it to class, they created a ride service. The student uses it, but so do typical Edgewood students. That is what the best research shows: Done well, programs that merge disabled students with the mainstream population benefit everyone.

There are two bigger issues, not just for Cutting Edge but for the Think College movement more broadly: cost, and the definition of a good education.

Students at Cutting Edge pay full tuition, but the program does not share the college’s accreditation. That means federal financial aid is not available to its students. Where should the money for their tuition bills come from? Most parents of children with intellectual disabilities do not save for college, although the Think College project is inspiring many parents to reconsider that.

Meg Grigal, co-principal investigator at Think College, says there are more types of funding available than ever before, including some state programs and a federal "comprehensive tuition program" status that entitles students to other forms of financial aid. More important, advocacy groups are working with federal agencies and Congress to develop appropriate standards for accreditation that would open up all forms of federal funding. The challenge is figuring out what that accreditation should look like. The premise behind loans is that the education students receive will pay off financially over the course of a career; hence, going into debt for college is a good decision.

That premise is, of course, hotly contested right now across society. Either way, it doesn’t apply to this movement. Cutting Edge focuses heavily on job skills, and in fact 80 percent of its graduates are now working in jobs outside of "sheltered workshops"—i.e., segregated work environments in which people with disabilities can find jobs, often at a subminimum wage. Still, the types of jobs outside such workshops are unlikely to come close to matching the costs of an Edgewood education. For accreditation in such cases, the payoff has to be about inclusion, not salary.

According to Grigal, the key feature for accreditation will be the extent to which programs provide people with disabilities with a bridge from high school into adulthood, much as colleges do for the general public. They must do more than push the cliff from 22 to 26, as that doesn’t change anything in the long term. Rather, inclusive postsecondary-degree programs for people with intellectual and developmental disabilities need to offer the skills and the experiences that make a more inclusive society possible. Grigal sees this as falling within the diversity mandate articulated by so many colleges. Disability is diversity.

What the Think College movement proposes, and what Cutting Edge embodies, is engagement, not charity. The students’ families pay for their educations. Still, creating a program like Cutting Edge requires investment of time and resources and the willingness to adapt college traditions to new sets of needs. These changes are happening. In 2007, there were 39 four-year colleges with inclusive programs for people with intellectual and developmental disabilities. Now there are above 200, with even more in the works.

Cutting Edge and the programs like it give me hope as an educator. I believe our institutions can do more to serve the public good and to engage with pressing social issues. Of course, this isn’t just because I’m interested in public engagement and academe, but also because I am a father.

My son, Nico, has Down syndrome. He’s 7 years old, and until recently we hadn’t saved a penny for his college. Why would we? Then we saw Noah’s acceptance video, and I got to meet Hafner and Coogan. Now, we’re thinking college. Moreover, for the first time, we see college as part of the solution to building a better life for our son.

David M. Perry is an associate professor of history at Dominican University. His blog is How Did We Get Into This Mess?, and he writes on occasion for The Chronicle' Vitae. Follow him on Twitter @lollardfish.