PSU program opens doors of higher ed to students with intellectual disabilities
Author: Shasta Kearns Moore - Portland Tribune
Posted: December 11, 2015

“I want to go to college,” said Daniel Jarvis-Holland, and the room erupted in laughter. But not for the reason you might think.

Daniel, a sophomore at Benson Polytechnic High School who has Down syndrome, used his “British accent” to make the statement at the national disability rights TASH conference in downtown Portland on Thursday, Dec. 3. The audience was laughing with him at his false pomposity.

It is that sort of inclusiveness and social interaction that Daniel and his team of supporters hope he can achieve at Portland State University, while simultaneously bettering his odds at a self-sustaining life and career.

Portland State University recently won a $2.5 million federal grant to set up a college program for individuals, like Daniel, who have intellectual disabilities.

The money is going to provide for academic advising, teacher training, program development and community outreach.

“It’s going to help us build a set of supports and educate and prepare the community of PSU and beyond for this big change in having a wider range of student needs served on campus,” said Ann Fullerton, who will co-direct the program. Fullerton currently trains student-teachers in PSU’s Graduate School of Education in how to teach an integrated classroom of general and special-education students.

The Think College Inclusion Oregon students will spend roughly half of their time working in their chosen field and the other half integrated into courses with the general population.

“What we’re going to create here is a support structure that lets a student ... with (intellectual disabilities) be a PSU student — as much as possible to have all of the same experiences that a PSU student has, to have access to all of the opportunities,” Fullerton says.

Parents will still pay tuition. Students with intellectual disabilities also are increasingly able to apply for standard financial aid as lawmakers dismantle barriers against nontraditional diplomas and college savings plans for people with disabilities.

Cutting-edge program

The five-year program will serve five students in 2016-17, ramping up to eventually serve a total of 35 students.

“If we can figure this out for five people, we can figure it out for a whole lot more than five people,” says Angela Jarvis-Holland, Daniel’s mom and executive director of the Northwest Down Syndrome Association.

Jarvis-Holland says the catalyst for turning 10 years of relationship-building into a funded program was an April conference of the association’s All Born (In) initiative. The parents and their children with Down syndrome were separated to brainstorm ideas for inclusion. When they came back together, the parents saw four of their kids had written that they wanted to go to college.

“We just all looked at each other and said: ‘There ain’t a college,’ ” Jarvis-Holland says.

But quickly the association formed a coalition of seven partners and helped PSU apply for a grant from Think College — the first in Oregon. In the first round, the Think College program, through the Institute for Community Inclusion at the University of Massachusetts, Boston, gave out federal dollars to 27 programs across the country on 52 college campuses, serving 2,166 students.

Debra Hart, a principal investigator at the institute, says Portland’s program joins the second round of five-year grants and will be on the cutting edge. The majority of programs across the nation are segregated from the general population, whereas Portland State’s program will be integrated. Even the design of the program will include voices from people with intellectual disabilities and what they would like to experience.

Jarvis-Holland says this isn’t about warm fuzzies — she wants her son to be a productive member of society and living independently.

“The outcomes for employment are just outstandingly better,” she says. “You don’t have to be caring, you’re just, ‘I don’t want them to be on the sofa.’ ”

In the first round of Think College grants, the program reported graduates had a 27 percent reduction in those who needed Social Security disability financial assistance. And, according to Think College researchers, while typically only about 15 percent of individuals with intellectual disability have paid employment, graduates from their program reached 40 percent paid employment and many went on to other academic pursuits.

“I think if someone is able to have a job at a competitive wage, then that very much leads to being less dependent on society,” Fullerton says.

“More and more we’re talking about social justice, not just disability rights,” Jarvis-Holland says. “It’s nice to have emotions, but I don’t want to pay for something that’s not going to have outcomes.”

Matters of life and death

Portland State University’s college program marks a sea change in how people with intellectual disability, particularly those with Down syndrome, are seen in society.

The National Down Syndrome Society says life expectancy has increased dramatically for people with Down syndrome — from 25 in 1983 to age 60 today.

That means a generation or two ago, many people with Down syndrome did not live to college age and certainly weren’t seen as college material.

Northwest Down Syndrome Association Executive Director Angela Jarvis-Holland says modern medical advances, such as heart surgery, have prolonged the lives of people with Down syndrome. But much of the change has also come from parents setting a higher bar.

“Once we got our kids out of institutions, that increased life expectancy in a huge way,” says Jarvis-Holland, adding that people with Down syndrome frequently used to die from aspiration pneumonia from poorly assisted feeding and lack of physical therapy.

Though the figure is decreasing, the most recent research suggests that between 67 percent and 85 percent of fetuses diagnosed with Down syndrome in utereo are aborted.

While her association does not take a position on genetic testing and terminations, Jarvis-Holland says she does think the majority of people carry around an outdated stereotype of intellectual disability.

“It may impact people, when they see Daniel,” she says.