Thinking about College – We can do this.

I am a college professor. We have a college savings fund for my daughter, principally funded by parents so far, though we’re beginning to be able to contribute too. We do not have a college savings fund for my son, because he has Down syndrome, and we never thought that college was a reasonable option.

We were wrong.

This is the viral video of Noah VanVooren getting into the “Cutting Edge” program at Edgewood College, in Madison WI. Like a million or so other people, I saw it and thought – what? College? What’s this program? I looked it up. I said, “wow!” And then I thought – well, I go to Madison all the time for music gigs and I write regularly for the Chronicle of Higher Education, I bet the folks at Edgewood would talk to me (also coincidentally the sister school to Dominican University, where I work, as they were both founded by the Sinsinawa Dominican order. We share a mission).

I spent a lovely summer afternoon meeting people at Cutting Edge, including the founder Dedra Hafner, and Katherine Coogan, a student with Down syndrome who came over from Janesville. It’s a terrific program and Hafner is an immensely savvy director, thinking hard about how to make the whole program integrate across the campus. It’s a model of thinking inclusively as an epistemology, not just in terms of class time and hourly schedules.

Today, The Chronicle published my essay on No Longer ‘Falling off the Cliff’:

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.

The cliff is real and it’s scary. Moreover, there is no one program that can address it. Instead, what we need are creative people thinking about jobs, trainings, community groups, internships, camps, and, increasingly, college.

There are issues. It’s not free. It doesn’t fall into our traditional (though much contested) model of financial aid being an investment in a college-educated well-paying career. Most financial aid isn’t even available. I talk about these issues in the article. Still, I conclude:

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.

Which is to say – time to start saving. Time to start thinking college.

Finally, a call for action.

If you are an academic, please share my article with your administration. Say to them that this is possible. It’s not charity. It’s a form of public engagement (a university working on a major social issue – “the cliff”). It’s complicated but not ultimately disruptive. That it fits into diversity initiatives (mantra: disability is diversity). That there are people at the Institute for Community Inclusion who want to help you. Take this article to your administration and say – we can do this. We should do this.

Thank you.