Helping Students with Intellectual Disabilities Conquer College

This story about intellectual disabilities was produced by The Hechinger Report, a nonprofit, independent news organization focused on inequality and innovation in education. Sign up for Hechinger’s newsletter.

LOGAN, Utah — It was Day One of orientation for the 15 students in Utah State University’s program for students with intellectual disabilities, and the group was playing a game of Get-to-Know-You Bingo. Courtney Jorgensen, pen in hand, wandered the courtyard, searching for the unlikely individuals who didn’t use Facebook and didn’t like dessert.

“I know one we both have!” Jorgensen’s new roommate, Jessica, exclaimed, marking an X in a box in the left column. “We both love to dance.”

It was a bittersweet moment for Casey and Dean Jorgensen, Courtney’s parents, who live two hours away from the college, in Grantsville, Utah. They’d always hoped that their daughter might be able to attend college, but a college education was never a guarantee. They were excited for her, but like many parents of college freshmen, not quite ready when the time came to go.

“I’m probably going to cry all the way home,” said Casey.

Some students in the Aggies Elevated program, named for the university’s agricultural college origins, have Down Syndrome, some have autism and several have multiple diagnoses. All have IQs of 70 or less.

Without a program like Aggies Elevated, many of these students would be living at home, working menial, minimum-wage jobs. The employment rate for adults with cognitive disabilities is just 19 percent, according to recent estimates. Those who do work make half of what adults without disabilities earn.

The goal of Aggies Elevated — and the 274 other postsecondary transition programs for students with cognitive disabilities scattered across the country — is to prepare students for meaningful work and independent living. By the end of the two-year program, these students should have not only a certificate, but also the connections and confidence they will need to become self-sufficient adults.

Results so far are encouraging. Close to two-thirds of students who completed one of 25 federally funded programs between 2015 and 2017 found paid work within a year, according to a recent survey. Ninety percent of Utah State’s 19 graduates are currently employed, and three-quarters are living on their own, according to program researchers.

But there still aren’t enough programs to meet demand, and federal funding for some of them expires next year. That’s left colleges like Utah State scrambling to find other sources of money.

Courtney’s dream is to become a florist and a mom. As a child, she’d make weed bouquets for her parents; as a teenager, she won three blue ribbons in the state fair for her floral arrangements. But she couldn’t find work, in part, her mom believes, because “employers see a person with a disability and aren’t willing to take a risk.” She hopes the internships her daughter will get through the program will help convince employers that she’s capable.

Courtney, meanwhile, said she’s excited to learn “life skills that will help me throughout my life.” She thinks the hardest thing about college will be having to advocate for herself. “I’m a little shy … well, a lot shy,” she said with a smile. “I struggle with reading and spelling. It’s hard to ask for help.”

Courtney’s disability is hard to pin down. When she was young, doctors thought she might be deaf, or have autism, her parents said. They tested other theories, but nothing fit. Eventually, her parents stopped looking for a label.

“When she was 8, we were riding in the car and she asked me ‘Mommy, what’s wrong with me?’ ” her mother recalled. “I said ‘Nothing,’ and we went and got ice cream.”

By high school, Courtney was a bundle of contradictions. She had trouble processing spoken language, but she sang beautifully; she stumbled over some words, mispronouncing or slurring them, but she could recite theatrical monologues by heart; she had severe clinical anxiety, but she loved socializing, and was active in swimming and theatre.

“She’s a mystery,” said Dean. “Doctors have done brain scans and EKGs, but they can’t figure her out.”

In school, Courtney had a reduced workload, a paraprofessional teacher assigned to help her in her classes and was allowed other accommodations, like permission to dictate answers and use a calculator. Her school district also provided support to help Courtney transition out of high school, which federal law requires for students who qualify for special education, but her mother says there was little mention of college as part of the program.

After graduation, Courtney took part in a life skills program for young adults with intellectual disabilities. But the other participants had more severe disabilities than she did, and Courtney got a little depressed, her dad said. He thinks she’ll fit in better in Aggies Elevated — and maybe even continue on to a four-year degree.

They found the program through a state resource center and chose it “almost by default,” said Dean. It was the only one in Utah.

“We want her to have the experience everyone else can have if she wants it,” he said. “I think this program will be life-changing.”

It was students and their parents who pushed for the first programs for students with intellectual disabilities, roughly 20 years ago. Some families even financed them, through donations to the colleges. “They’d been educated in inclusive school environments,” said Robert Morgan, a professor of special education and rehabilitation at Utah State. “Their peers went on to college, and they said ‘why not me?’ ”

But selling professors and administrators on the programs wasn’t always easy. Some worried about a dilution of standards, or a lessening of institutional prestige. Others had practical concerns about risk and liability.

Morgan encountered many of those objections when he proposed creating a program at Utah State around 2000-01 after hearing about similar efforts elsewhere. He managed to convince colleagues to create an employment preparation program for high school students with an Individualized Education Program (IEPs set forth goals for students with disabilities and specify the services, accommodations and modifications they will receive).

That program, which is still in existence, “broke down the resistance” to the creation of a college transition program, Morgan said. When three families approached the college a few years later with an offer to fund a program their children could attend, administrators said yes. The first cohort of eight students enrolled in 2014.

Nationally, over the past decade, the number of programs for students with disabilities has increased by 85 percent, according to Think College estimates. Much of that growth can be attributed to a 2008 reauthorization of the Higher Education Act that, among many other changes, allowed students without a high school diploma to receive federal financial aid to attend approved “comprehensive transition and postsecondary programs.” It also created a decade-long $110 million grant program that has financed programs at 44 two- and four-year institutions, including Utah State.

Before Congress made that change, students had to pay for programs out-of-pocket or use Medicaid or Vocational Rehabilitation funds, which are designed to help people with mental or physical disabilities become independent and find employment. But not every state allows adults with intellectual disabilities to use such funds for college, and some low-income students couldn’t afford to attend.

The law “lit a fire under the movement for sure,” said Cathryn Weir, program director for the Think College National Coordinating Center at the University of Massachusetts Boston.

The federally supported programs vary widely in size, ranging from two to 80 students, and cost, ranging from free to $65,206. Some of the transition programs prepare students for a specific profession, while others offer a more general credential. Just under half offer student housing, and three-quarters are considered “academically inclusive,” meaning that at least half of course enrollments are in mainstream courses.

Aggies Elevated falls somewhere in the middle, offering some specialized courses, while permitting Aggies students to enroll in freshman- and sophomore-level courses. Students pay standard tuition, room and board, plus a $5,000 program fee.

This year, 25 students applied for the 10 slots. They went through a lengthy application process that involves inventories, interviews and a campus visit, during which applicants interacted. Sue Reeves, the program director, said they’re looking for the student “who wants to go to college that would not otherwise be able to.”

“If it’s just their parents’ idea, they’re not going to do well,” she explained.

The morning after the Orientation Bingo game, after the chosen 10 said goodbye to their parents and spent the first night on their own in the dorms, they headed to a classroom for a crash course on college expectations. Reeves handed out Post-its and asked students to write down three ways college is the same as high school and three ways it’s different.

Courtney sat in the front row, and spoke her answers slowly into her phone. She then transcribed the recording. The device helps her spell words, she explained.

Reeves read the students’ responses aloud. Under the “same” category: “You have to be on time;” “You have to turn in your assignments” and “No swords allowed.” Under “different”: “No more 5-minute bells,” “More freedom” and “You have to be responsible for yourself.”

“Any Spiderman fans out there?” Reeves asked. “With great freedom ….”

“Comes great responsibility,” several students finished, in unison.

When Reeves lectured the students about using smartphones in class, Courtney quickly tucked hers into her pocket, worried about breaking the rules. During a break, she asked Reeves if it would be OK to use a phone for transcribing. Reeves reassured her: “If it’s a tool you use, it’s OK,” she said.

At the end of the day, Courtney was tired and a bit overwhelmed. When a graduate student mentor asked the students to rate their stress level for the day, on a scale of 1 to 5, she gave hers a 3 or 4.

“It’s a lot,” she said simply.

But Courtney was raised in the Mormon faith, and “has a firm belief that trials and challenges can make you stronger,” her mother said. One of her favorite religious songs is Laura Story’s “Blessings,” which asks, “What if your healing comes through tears?” Before she left for college, Casey bought two teardrop-shaped crystals — one for her, one for Courtney — to remind her daughter of that line. Courtney put hers on the desk of her dorm room. It reminds her that “you can do it — you’re not alone.”

Although the number of college programs for students like Courtney is growing, they’re hardly keeping up with demand, advocates say. In some states, there still isn’t a single program.

Even the most established programs face an uncertain future, with funding subject to the whims of changing college administrations, said Weir, of Think College. “The programs are still pioneers, and they constantly have to show their worth and prove themselves,” she said.

To help them in that process, Think College published a set of voluntary standards for inclusive higher education in 2012. It’s now working on standards for program accreditation.

Weir said that true educational equity for students with intellectual disabilities is still years off: “275 programs sounds like a lot, but there are over 4,000 institutions” in this country.

Federal support for the grantees expires next year, and many programs are scrambling to identify new sources of funding. Some are looking to nonprofits or foundations for support, while others are considering scaling back staffing or raising fees, Weir said.

At Utah State, the president has pledged to continue Reeves’ position through university funds. The program fee, added this year, and other funding sources will pay for mentors and staff.

Colleges got a bit of good news this September, when the Education Department issued guidance clarifying that states can use vocational rehabilitation funds to support students with intellectual disabilities attending college. In recent years, some states — Utah included — have denied funds to students on the grounds that the programs weren’t awarding “industry recognized credentials,” a narrowly defined category that excludes the two-year certificate in Integrated College and Community Studies that Aggies Elevated students earn.

Getting to graduation won’t be easy for any of the students in the Aggies Elevated program. Many of them struggle with time management and have trouble with irregular schedules. Several have difficulty navigating new places; some have never been required to turn in homework; some are used to being told where to be at all times, says Reeves.

But Weir said college is the “perfect incubator” for young adults with intellectual disabilities, providing a relatively safe space where they can take charge of their own lives. She said the “sense of self-determination and confidence” that students gain through college is key to their success in the labor market.

“The skills they learn related to employment are important, but part of it is that their view of themselves changes,” she said. “It’s hard to measure, but it’s quite obvious when you see it. They talk more, they look you in the eye more.”

By the second day of orientation, Courtney seemed more confident. During a group grocery-shopping trip, part of a lesson on meal-planning and preparation, she took charge, leading her team to the carrots and watermelons, and asking the questions that drove their decision-making — Small bag or large? One container or two?

The students rode the city bus to the store to learn how it works, and on the way home, the driver asked, “Are we having fun?”

“Yeah!” the students said.

“Got the bus system down?”

“No!” replied Courtney, laughing.

This story about intellectual disabilities was produced by The Hechinger Report, a nonprofit, independent news organization focused on inequality and innovation in education. Sign up for Hechinger’s newsletter.