Disabled students say goodbye to the end of an era
EDINBORO, Pa. (AP) — Veronica Siaba is leaving college because the program she traveled hundreds of miles for is gone.
It’s not her academic major. If it were, the Edinboro University junior with cerebral palsy would know she could get the courses needed to finish through a practice that safeguards progress toward degree, even when that degree program dies.
But the personal care attendants on campus who offered basic life needs — feeding, showering and toileting — to students with severe physical disabilities were not part of an academic program, or even a required service, her school said.
Rather, they were a “special” service that complements other support, one the school had no more obligation to maintain than, say, a collegiate sport.
So in September, when Edinboro announced it would end a decades-old program that is unique nationally, Siaba and others were given the academic year to make a choice: Gamble that off-campus agencies could provide the same access to 24/7 care that drew them to Edinboro, or leave the university.
Siaba, 20, of New York City, reluctantly opted to leave.
“Unfortunately, I will be going somewhere else,” she said. “I don’t know where yet.”
“Honestly, it’s more painful than anything because I came here under the premise that my disability wouldn’t matter as much,” said Siaba, a communication studies major who uses a wheelchair. “I don’t know if this is discrimination by definition, but I was under the impression this was promised to us for a full four-year education.”
Final dorm goodbyes briefly left her sobbing, then suddenly laughing, as attendants in their last day in the job bent down with hugs, including Mark Borczon, 53, who worked there 29 years.
“I’m going to miss you the most scarecrow,” he told her.
Even those most angered by Edinboro’s decision acknowledge the school’s special place nationally in promoting life pursuits of those with disabilities. They accept Edinboro’s contention that it still offers students with disabilities more than most campuses, even if care for the most vulnerable has shifted to private, community based agencies off campus.
Still, in their view, Edinboro went back on its word.
Freshmen and others arriving on campus did not know the school already had decided to end the program. The announcement came weeks into the new school year.
Wilson Shealy, whose daughter Danielle, turned down a scholarship in her home state of South Carolina, said Danielle plans to stay because she figures she must hire her own aides as an adult. “We’re going to try and make it work,” her father said.
But he’s not happy about it. He said Edinboro should have “grandfathered” students already enrolled, offering them attendants until they finished.
“That would have been the humane thing to do in my mind. That would have been the morally correct thing to do,” said Shealy, an aircraft mechanic from Lexington, S.C. “The bottom line is, every student and every parent who went there for that program feels betrayed.”
The program had 35 students, most from other states, as of January, a number now down to 31 with five graduating and one planning to continue studies online. Eighteen have registered for fall and the rest are leaving or are undecided, according to university data.
Mary Fetzner-Jensen, a registered nurse and the program’s supervisor, said the last attendants were to be furloughed a day before commencement. That was a problem since those graduating the next day had no one to dress them so they can accept their degrees, she said.
Edinboro wanted an off-campus agency like those taking over in the fall to step in, but none could, Fetzner-Jensen said. So existing staff agreed to stay in the job an extra day to help shower the students, do their hair and get them into caps and gowns.
“Ironic,” said Fetzner-Jensen, whose last day is May 10.
Staff worked to keep the mood upbeat in Rose and Earp halls, where students in the program lived, at one point buying Silly String as a distraction. Fetzner-Jensen had herself met with prospective freshmen last year, talking up the program, unaware that a Sept. 19 announcement would change everything.
“I think it’s a travesty,” she said.
The decision, she said, did not adequately take into account the make-or-break role such care had in deciding if these students can even navigate daily life, much less keep up in class.
“Some of these students, if they drop their phone, they cannot pick it up,” she said. “They can’t lower their covers at night in bed if they are too warm.”
Angela Burrows, a university spokeswoman, said switching to an approach used by other campuses does not change a fundamental fact. “Edinboro University is deeply committed to students with disabilities,” she said.
Over the decades, the state-owned university with 4,800 students, became a mecca for students with spinal cord injuries, and for muscular or neurological conditions. Its attendant care program was among a handful nationally, but differed by relying less on student workers and using a registered nurse and professional in-house attendants.
The program cost tens of thousands of dollars beyond tuition and regular fees, a sum families absorbed with help from insurance and state agencies like the Pennsylvania Office of Vocational Rehabilitation, which subsidized care for Pennsylvanians.
In announcing the program’s termination, Edinboro cited a state OVR decision to end subsidies for Pennsylvanians, and a belief generally that students are better served by learning how to hire their own care attendants.
Community-based services are more available now than when Edinboro’s program began in the 1970s, and while the university no longer will provide attendants, a care coordinator will be available to help pair off-campus workers with students based on individual need, officials said.
Documents reviewed by the Pittsburgh Post-Gazette show Edinboro as far back as 2013 was talking with the state about changes to the program, which suffered losses at one point of half a million dollars on a $1.7 million budget, a gap later pared to roughly $19,000.
Under former Edinboro president H. Fred Walker, a campus that faced enrollment losses and financial strains hired a consultant in 2017 that recommended outsourcing the program.
Jack Hewitt, a district OVR administrator, told the Post-Gazette last fall that Edinboro was overdue in making the change. He said contact with private agencies convinced him that adequate community coverage now exists, though he offered no regional coverage data to buttress that conclusion.
He also said OVR took no position on whether Edinboro should end its program, only that it could no longer pay for Pennsylvanians in it. Michael Hannan, interim Edinboro president, said it was not appropriate to offer separate programs for in-state students and non-Pennsylvanians.
Burrows, the school spokeswoman, said Edinboro does ensure students can complete academic programs facing closure. But attendant care was a non-academic service contracted by semester and thus not really comparable.
“The university has discontinued non-academic programs in the past without grandfathering participants,” she said. “Some sports programs serve as examples. Varsity baseball, for instance, was discontinued in 2003.”
That said, leaders expressed concern privately over what to do as students with severe disabilities continued seeking out a program that by March 2018 was in question, according to emails that month obtained by the Post-Gazette through the state’s Right-to-Know Law.
“We currently have 6 students that are trying to sign up for attendant care this fall. New student admit days etc. have brought students -- ,” wrote Stacie Wolbert, then associate provost and interim dean of students and campus life, who is now an associate Vice President. “I will try to stop sign-ups.”
Hannan, then Edinboro’s provost, replied: “OK, Let’s spend some time tomorrow thinking about timeline and messaging, especially for these students.”
Six more months passed before an announcement was made. Days after those emails, Walker resigned as president over comments he made that were unrelated to attendant care program, leaving the university to deal with a sudden change in leadership.
“We worked for months to find the best solution,” said a university statement from Burrows, “one that would come as close as possible to replicating the service we had provided.”
“We waited until we had something definitive to say,” she added.
On Friday, as many of those students were saying their goodbyes, Borczon recalled that he was still a college philosophy major who knew nothing about disabilities when he took a job that became his career and changed his life. He believes in-house attendants were the best hope to give students with disabilities a shot to thrive on campus.
So does Siaba, who said students in the program were showing they could succeed.
But now they are scattering.
Rebecca Vassell, 22, of Mount Royal, N.J., who has cerebral palsy, graduated summa cum laude Saturday.
Haley Sulahian, 21, a junior from Shelter Island, N.Y., is transferring to Adelphi University in her state.
Freshman Kyle Brosh, 19, of Shamokin, is hoping to return to Edinboro in the fall and likes the campus. But he said the university should have told him and others earlier “so we could make a more informed decision,” noting he might have chosen Bloomsburg University, half an hour from home, instead of a campus more than 250 miles away.
The secondary education major, who has Duchenne muscular dystrophy, has met with an off-campus care agency. He is not not entirely sure yet how overnight assistance will be handled for students in the program who will be able to live in other campus housing.
“They sort of want us to share staff between a few students,” he said.
Victoria Fox, a nursing major from Selden, N.Y., who wants to someday work in a neonatal intensive care unit, also is staying since she fears credits would be lost by transferring. The semester’s end this time would be harder to take.
“It’s kind of bittersweet because we’re all excited to go home, yet we’re kind of sad because a lot of us aren’t going to be back here,” she said. “Honestly, I think there’s going to be a lot of crying.”
Information from: Pittsburgh Post-Gazette, http://www.post-gazette.com