College Programs for Students With Intellectual Disabilities Grow With Little Oversight

It was never a question of whether Kellyn Donahoe would go to college like her four older siblings.

However, when her mother started to look for viable options for her daughter with Down syndrome near their home in northeast Ohio, she was surprised — and disappointed — with the lack of choices in their area.

While her other children had dozens of colleges to choose from, Sandy Donahoe told BestColleges that her daughter realistically only had three possibilities.

“We didn’t realize how limited it was until we actually started searching,” she said.

Nonetheless, with nearly two full semesters in the books, Sandy Donahoe said she is over the moon with the choice the family ultimately made.

Kellyn Donahoe enrolled in career and community studies at Kent State University in fall 2022. Her mother said the experience has allowed her to live independently, engage in university clubs and activities, learn self-advocacy skills, and begin to pursue her passion for working with children and athletes in education.

Moreover, it gives her daughter a chance to prove to her peers that she belongs.

“It’s not just important for her to know she can go to college and continue her education,” Sandy Donahoe said. “It’s for others to view people with disabilities as contributing members of society, too.”

The Donahoe family’s story is made possible thanks to a decade-long campaign to call attention to programs for students with intellectual or developmental disabilities.

It’s a campaign that’s largely succeeded. According to Think College, the preeminent resource for information about these programs, there are 336 such programs across the U.S., as of May 2024. That includes 114 housed at two-year community colleges and 202 at four-year colleges and universities.

Nancy Murray, senior vice president at advocacy group Achieva, told BestColleges the number of programs exceeds the expectations she had a decade ago.

“The idea that these students would go to college — even 10 years ago — this was not something that was really on most people’s radar,” she said.

Despite the progress, one major hurdle remains to hold back the perception of legitimacy: accreditation.

Some institutions allow students to access federal funds to pay for the programs, but besides checking a few regulatory checkboxes, there is no oversight of the quality of these programs.

It’s why the Think College National Coordinating Center has been working to create accreditation standards since 2010, Think College’s co-director, Meg Grigal, told BestColleges.

Rewind to 2008, when Congress last reauthorized the Higher Education Act. As part of that process, lawmakers created Transition and Postsecondary Programs for Students With Intellectual Disabilities (TPSID), a grant program that encouraged higher education institutions to develop inclusive models for students with intellectual disabilities.

Grigal stresses the word “inclusive” here.

Prior to this action, post-high school programs for these students were often segregated. TPSID inspired today’s model program that brings students with intellectual disabilities together with the broader student population.

She added that the 2008 reauthorization also directed the Department of Education to create Comprehensive Transition Program (CTP) guidelines. With this, post-high school programs that checked certain boxes — like integrating students with intellectual disabilities — could gain CTP status, allowing students to access federal funds to afford enrollment.

“That was a game-changer,” she said.

Still, these programs are in no way homogeneous, said Karen Oosterhous of the Delaware Network for Excellence in Autism. The students each program serves vary widely, as does the support provided to meet the needs of these students.

A program aimed at teaching higher-functioning autistic students may differ from another program designed for students who didn’t complete high school, for example.

To qualify for CTP, there are a few similarities, Oosterhous said. This includes:

She added that most, but not all, of these programs end with the student receiving a work certificate. In some cases, they can earn a degree.

These certificates can be broad, like a certificate in “career studies.” Or they could be specific to certain professions like childcare.

Since 2008, these programs have evolved to offer new supports and tackle situations unique to this population of students.

Take ClemsonLIFE at the University of Clemson in South Carolina, for example. Executive Director Joe Ryan told BestColleges he started the program for students with intellectual disabilities over a decade ago. At that time, the university wouldn’t let enrollees live on campus while in ClemsonLIFE. When he got the grant, he said the state university system first encouraged him to take the funding to a local community college instead.

Fast forward to today, ClemsonLIFE is the largest student organization at Clemson with 750 current student volunteers.

ClemsonLIFE offers three paths for students with intellectual disabilities.

First is the original two-year program. Here, students participate in traditional courses and classes aimed at teaching independent living. That includes learning skills like navigating an airport or cooking nutritious meals. Students also live on campus with an independent living assistant to help guide them.

All the while, ClemsonLIFE gradually ramps up the number of hours students work per week in internships. Ryan said to start, students work just 4-9 hours each week. By the end of the two-year program, they may be working over 30 hours per week.

Students can then choose to continue to the advanced program, where they move off campus. There, they get a lot less class time and focus more on developing working skills.

Ryan said ClemsonLIFE currently works with 36 local businesses that provide internships and paid employment.

Lastly is ClemsonLIFE’s hospitality credential program.

This is for students who have a specific interest in hospitality jobs. Clemson now has a hotel staffed by ClemsonLIFE enrollees. They carry out tasks including front desk service, room turn-downs, maintenance, and food preparation.

That visibility has helped change the perception of students with intellectual disabilities over the past decade, he said.

“Half our job is to train our students,” Ryan said. “The other half is to train the community on the abilities of these students.”

The baseline goal of programs like ClemsonLIFE is to improve employment outcomes and increase a student’s ability to live independently.

According to a report co-authored by Grigal, working people with an intellectual or developmental disability typically earn a little over $10,000 per year. Those who participated in a certificate or degree program earn nearly $18,000 annually.

Murray of Achieva added that these programs are also a way for students to discover what profession interests them. She recalled meeting one young person who became interested in occupational and physical therapy because their college program allowed them to sit in on a wide array of classes during their first year.

From the perspective of colleges, creating programs for students with intellectual disabilities adds a new bucket of tuition dollars, Murray said. Families often have access to Social Security funds, Medicaid waivers, and government grants to help pay their way through often-pricey programs.

“Let’s face it: Colleges need students that have the money to come,” she said.

The reauthorization of the Higher Education Act in 2008 was a landmark moment for those advocating for more programs for people with intellectual disabilities.

2009 marked the first federally funded national survey of college programs serving students with an intellectual disability in the U.S. The study found 149 higher education programs supporting students with intellectual disabilities in 39 states. According to data from Think College that was self-reported by programs, the number of colleges has more than doubled since then, and these programs have extended to 49 states.

While progress was encouraging, Murray said the COVID-19 pandemic halted much of that momentum.

Colleges and universities decided to refocus their efforts on their traditional and online education programs in the face of enrollment losses. Adding or expanding a program for a niche set of students, she explained, was a tough sell in the thick of the pandemic.

“We’re still not back to where we were,” Murray said.

Even with the growth that occurred before the pandemic, the number of schools that offer sufficient programs for students with intellectual disabilities is relatively low. Only 4% of the country’s total institutions offer a program made for this student population, according to a 2021 report co-authored by Grigal of Think College.

It makes the search process difficult for families.

For the Donahoe family, finding a college for Kellyn in Ohio was important since in-state tuition would make her daughter’s education more financially feasible. She said that left her with just nine options, but once she included other parameters — like on-campus housing and costs — the family had just three viable choices.

According to Think College’s database, 24 states offer three or fewer options.

Donahoe stressed that having more programs doesn’t just provide more options but helps expand the popularity of all programs. Currently, high school counselors aren’t informed enough about these options to present them to eligible students, usually because they aren’t aware they even exist, she said.

“The typical high school counselor knows the traditional route to college,” she said. “But for a student with an intellectual disability, nothing is ever the typical route.”

Murray of Achieva stressed that awareness was rising before the pandemic.

She recalled a 2018 convention centered on people with Down syndrome that she attended. The convention included a town hall featuring 50 colleges and universities. The crowd had not only parents/guardians of high schoolers but also families of infants and toddlers with Down syndrome interested in learning about what they can do to prepare their child for postsecondary success.

“That gave me hope that in 10-20 years, this isn’t going to be new anymore,” Murray said. “It’s going to be something that families are planning for.”

CTP is the only government oversight of programs for students with intellectual disabilities. When a program has this label, it ensures that students are gaining work experience by taking classes with the wider population.

It does not, however, track the quality of any program.

“Is it a good education? I don’t know. They’re not going to send anybody out to look at it,” Grigal of Think College said. “It doesn’t reflect a quality assessment; it reflects a regulatory achievement status.”

It’s why the National Coordinating Center for TPSID programs has been working to institute accreditation for these programs since 2010. Grigal said it released draft standards in 2014 and the Accreditation Workgroup has continued to take steps to make those draft standards a reality.

Martha Mock is the current chair of the Accreditation Workgroup, and she told BestColleges the group is nearing the home stretch.

One of the major obstacles, she said, was finding an accrediting agency that would be willing to take on the work of accrediting hundreds of programs. After much searching, they never found a situation that worked.

“We didn’t find any natural fits,” Mock said.

That’s why the Workgroup has now taken it upon itself to become an accrediting agency. She said this fledgling agency is working with five programs currently for its pilot run. Once the agency demonstrates it can perform site visits to assess a program’s quality, then it may be recognized as a legitimate agency.

The goal is to launch by 2025.

While daunting, Mock added that having a dedicated accrediting agency could be beneficial for programs for students with intellectual disabilities.

“We don’t need to be good at everything, but we have a really strong need to be good at programs for students with an intellectual disability,” she said.

Mock’s dream is for 75% of existing programs to be accredited 10-15 years from now, she said.

In May 2023, Western Carolina University (WCU) became the first college to earn accreditation for a program for students with intellectual disabilities. The institution’s University Participant (UP) program launched in 2007, making it one of the longest-running programs for students with intellectual disabilities in the U.S.

Many advocates see accreditation as the next step for programs serving students with intellectual disabilities.

For people like Donahoe, it makes the search less nerve-wracking if families know that a program has met certain quality standards. It also makes it easier for them to know the outcomes these programs produce, she said.

Advocates like Oosterhous of the Delaware Network for Excellence in Autism, meanwhile, see accreditation as a way to heighten the value of a certificate. A program can be intensive and adequately prepare students for high-quality work, but if employers don’t value it because it comes from an unaccredited program, the impact isn’t the same.

“I think it’s even more crucial for this group of students that there be some sort of endorsement of the skills they do learn,” she said.

Accreditation can also help prevent bad actors from entering this space and sullying the perception of these programs, Grigal said.

These bad actors may not be plentiful in this space now, but as these programs continue to expand in popularity, it’s only a matter of time before a school tries to make a quick buck at the expense of these students.

“There is always the potential for programs not focusing on student outcomes and not focusing on longevity,” Grigal said.

But perhaps most importantly, these programs need to be taken seriously by the higher education community at large to help peel back some of the negative perceptions surrounding people with intellectual disabilities.

For Donahoe, sending her daughter off to college isn’t just about improving her employability; it’s about proving to others that her daughter is a buoy for society, not an anchor.

“Just being given that opportunity is important,” Donahoe said, “not just for her to gain confidence in herself, but for others to see what people like her have to offer.”