The Path to Higher Education With an Intellectual Disability
The number of degree-granting institutions with options for these students is growing.
CLEMSON, South Carolina—Like many college students pestered by nosy relatives, Sydney Davis, a sophomore, is not exactly forthcoming when her boyfriend comes up in conversation. The couple has been together two years, Davis says with the exasperated tone of a young adult clearly trying to change the subject. Davis’s friend, Annsley James, a sophomore wearing a windbreaker with her sorority’s letters on it, sits on the opposite side of the room giggling.
It’s a scene that takes place across college campuses: two friends exchange knowing glances during history lectures, at basketball games, in line at the dining hall. But unlike the majority of young adults pursuing higher education in the United States, James, Davis, and their classmates are doing so with intellectual disabilities.
The women are two students in the ClemsonLIFE program, which offers two- and four-year certificates to young adults with developmental disabilities who may not otherwise have a path to higher education. Students—whose IQs range from the 40s to 70, according to Erica Walters, the program’s coordinator—will hopefully leave the rural, hilly South Carolina campus with the ability to live on their own. A photo of James, Davis, and another student laughing is one of many snapshots of proud young adults that decorate Walters’s office on the Clemson University campus. The students beam in graduation gowns and stand triumphantly in Memorial Stadium alongside a healthy smattering of purple and orange paraphernalia.
As is the case for many bright-eyed college-goers, the true, ultimate goal is not a perfect GPA or a resume filled with on-campus leadership positions, but a sense of independence: “The point of this program is we are training them, we’re teaching them employment skills, we’re teaching them independent skills, but they also have the collegiate experience,” Walters said. “You know, [a student might think], ‘My sister went to college, why can’t I?’ Well, you can. The opportunity is here.”
To make that freedom possible for students with intellectual disabilities, the ClemsonLIFE curriculum includes a variety of classes ranging from relationship skills and math to navigation and nutrition. All the while, the students are integrated with the rest of the Clemson population and work both on- and off-campus at places like the stately university Fike Recreation Center, local boutiques, and the Walgreens distribution center. Just like other Clemson University students, ClemsonLIFE participants get to immerse themselves in the small downtown area of Clemson, a place dotted with cranes as new apartment buildings join the sea of pizza parlors hosting university fundraisers, cozy cafes with cavernous fireplaces and plenty of study space, and campus-apparel shops with entire closets-worth of Tiger-themed clothing.
This year, Walters said the ClemsonLIFE program received 74 applications from students in 18 different states for just 12 available spots. The 16 percent acceptance rate is on par with the University of California at Berkeley, Washington University in St. Louis, and Georgetown University. That it is more competitive to secure a spot in ClemsonLIFE than at the University of Notre Dame should not be all that surprising: After all, 13 percent of public-school students received special-education services in 2013-14—a figure that encompasses a spectrum of learning differences ranging from ADHD to Down Syndrome. However, just 263 of the nation’s more than 4,700 degree-granting institutions offer programs for students with intellectual disabilities, which the American Association on Intellectual and Developmental Disabilities defines as “significant limitations in both intellectual functioning and in adaptive behavior.”
The number of programs is growing, experts say, but they are hardly keeping up with demand. Adults with intellectual disabilities are far from immune to the changes in the workforce that have accompanied the contemporary, evolving economy. The employment rate for adults with cognitive disabilities is just 22.5 percent, according to recent estimates—48.9 percent lower than adults without a disability. On top of that, a report published in March by the Department of Education indicates students with an Individualized Education Plan are about 18 percent less likely than students without one to even have expectations of obtaining a postsecondary education. As with the rest of the population, these students have to learn new skills and evolve to compete in the job market, and higher education could be an effective way to do so.
According to Walters, the employment rate for students who complete Clemson’s four-year program is 100 percent. In other words, it’s working.
In 1912, the psychologist Henry Goddard wrote in his study of the “Kallikak” family that, “no amount of education or good environment can change a feeble-minded individual into a normal one.” Goddard was part of the eugenics movement, which put forward the belief that certain characteristics can be passed from one generation to the next: People with “desirable” traits should have children to continue the strong line of positive attributes, and people with “undesirable” traits should be sterilized. Those with intellectual disabilities fell into the latter category.
The work done at Clemson, where the idyllic, brick campus seems to recede to reveal the jaw-droppingly gigantic football stadium known as “Death Valley,” and other programs like it contradicts Goddard’s idea that education cannot provide some sort of pathway to success for the intellectually disabled.
Though fewer than 6 percent of certification-granting institutions in the United States have these types of programs, the growth in contemporary options has been promising, said Meg Grigal, an expert on inclusive higher education and a principal investigator at Think College, an initiative at the University of Massachusetts Boston working to expand inclusive higher-education opportunities for students with intellectual disabilities. Grigal said that, as recently as the 1990s, programs for this population typically offered few class choices, often setting out a prescribed curriculum with less individual latitude.
Today, however, the story is unfolding differently.
Grigal said that in the early 2000s, there was just a “smattering” of higher-education options for students with intellectual and developmental disabilities and little faith that postsecondary schooling could become a reality for this population. With the passage of the Higher Education Opportunities Act in 2008, the U.S. government altered the requirements for Title IV financial-aid dollars. The law waived certain restrictions—specifically that a student must have earned a high-school diploma and be matriculating toward a degree—to qualify for federal money, increasing access and affordability of higher education for intellectually disabled students: “That was a huge game-changer,” Grigal said. “Prior to this, people with intellectual disabilities were not Title IV eligible, so that meant anybody who didn’t have the means—and college is expensive, and if you’re already supporting a student with disabilities, there may be other fiscal impacts on your family’s life—couldn’t go to college.”
In 2009, about 149 programs at two-year, four-year, and trade schools existed across the country, according to Think College estimates—that number has grown by about 77 percent in the eight years since. That’s in part because the Department of Education started funding Transition and Postsecondary Programs for Students with Intellectual Disabilities (TIPSID) grants, issuing the first round in 2010. Twenty-seven projects across the country were funded for intellectually disabled students over the course of five years, and Grigal said that the programs tended to focus on three broad areas: independent living (which is the bucket ClemsonLIFE falls into), academic access, and employment.
The ACE-IT in College Program at Virginia Commonwealth University was started thanks to a TIPSID grant and is focused on preparing students with intellectual disabilities for the workforce. “We want to make sure that they are really looking to heighten their career awareness and what they would like to be doing,” said Elizabeth Getzel, the program’s director. “We see employment as a gateway to getting into the employment sector, but also for being in arenas where there’s opportunity for growth and movement up, just like anyone.”
To prepare for their careers after VCU, those enrolled in ACE-IT work part-time on campus, meet with academic advisers, select classes from the vast university course catalog, and participate in a semester-long internship to solidify their post-program goals. Throughout students’ time in the program, Getzel said, they are developing the same skills—like teamwork, problem solving, and conflict resolution—that any young adult entering the workforce would need to hone.
And the results of data collected from the first round of TIPSID recipients paints a positive picture for the TIPSID programs’ effectiveness, indicating that higher education may be the intervention needed to turn things around. The employment rate for students who exited a TIPSID program was 40 percent—certainly a meaningful jump not only numerically, but also experientially. “This changes the starting line for career options for people with intellectual disabilities,” Grigal said. “It changes their social networks, it changes who they believe they can be, and it changes the expectations of the people in all the realms around them.”
Without access to higher education, the employment options for young adults with intellectual disabilities can include sheltered workshops where they may complete assembly-line-style work for less than $1 per hour. On the other hand, Walters, at Clemson, said students in her program typically enter paying jobs that include benefits; at VCU’s ACE-IT program, where the employment rate after graduation is just shy of 90 percent, Getzel noted one graduate working for a local company and making $15 an hour. Students who have the chance to take advantage of these higher-education programs go on to work in all kinds of fields, ranging from education to theater, leveraging the soft skills, work ethic, and independent-living experiences they had in college along the way.
And advocates argue that the expansion of these programs has the chance to positively affect the lives of not only students with intellectual disabilities, but also everyone on campus: “You’re missing a great opportunity to not only help a segment of society that needs your support, but you’re also going to enhance the reputation of your school because of the impact that these kids have on the other kids—the so-called traditional college students,” Donald Bailey, whose son has intellectual disabilities, said. “It’s a win for everybody.”
Bailey’s son wanted to go to college, but there weren’t any options in his home state of South Carolina. So Bailey decided to do something about it.
Bailey succeeded, and, in the decade-or-so since, has helped establish programs at five schools across the state for students with intellectual disabilities. In addition to Clemson, programs now exist at The University of South Carolina, Coastal Carolina University, College of Charleston, and Winthrop University.
Beyond applying for TIPSID grants, grassroots efforts by family and community members can also play a role in building higher-education opportunities for those with intellectual disabilities. In the mid-2000s, Bailey—along with Grigal and a number of other advocates—began the process of gauging interest for these opportunities and working with the state Legislature to secure funding. Initially, Bailey said the schools were “reluctant” to create the programs and hesitant to create on-campus living opportunities, severely limiting the number of students who could participate: “They were scared. They didn’t understand,” Bailey said. “I live in Charleston—the University of South Carolina is two hours away. So great, we got a program, but we don’t have a residential component.”
Since the first three students with intellectual disabilities enrolled in the University of South CarolinaLIFE about a decade ago, today more than 100 students are participating in the five programs across the state—a sign of progress that still leaves a lot of room for growth. “The development of inclusive higher-education options is sort of mimicking the path of typical higher-education options in terms of breadth and focus,” Grigal said. “Eventually, it would be nice if there were enough programs that, depending on whatever you’re interested in and your learning priorities, … helped everybody reach their own paths.”
The quantity of programs in South Carolina puts it in the top third of states in terms of available options. According to the Think College database, 17 states have just one or two available options for students with intellectual disabilities. Idaho, Oklahoma, and West Virginia, don’t have any options. With so little latitude, the choice element of the college-search process is inherently mitigated for these students—a caveat that, to the extent that the integrative options are meant to provide an authentic college experience, matters quite a lot.
If you were to search on YouTube “college acceptance-letter reactions,” you would find a trove of clips showing high-school aged students squinting through their fingers as they build up the courage to open an email that they know could change the course of their life. Viewers get an intimate look at young adults’ pure joy and crushing heartbreak at the hands of seemingly mysterious college-admissions officers. It’s quite the emotional rollercoaster. The video of Rion Holcolme, a student with Down syndrome, finding out he was accepted into the ClemsonLIFE program surely stands out from the pack.
“These are people who fought their whole lives to get something out of special education,” Grigal said. “College just opens up a whole new world of who they can be.”