Decade in review: Attendant care reaches end of an era

Category:  News
Wednesday, December 11th, 2019 at 9:12 AM
Decade in review: Attendant care reaches end of an era by Livia Homerski
Students gathered in 2018 following the announcement of the care program changes. | Photo: Hannah McDonald

Since 1974, Edinboro University has been considered a leader in higher education for students with disabilities — first through their Office for Students with Disabilities (OSD), and later through their Office of Accessibility Services (OAS). Ranked No. 6 nationally in the 2017 Most Affordable Online Colleges for Students with Disabilities, and No. 6 of 20 on the “Best Colleges for The Physically Disabled” list on dealingwithdifferent.com, these services were led by EU’s 24-hour attendant care program. 

By the fall 2019 semester, after 40 years of providing this care, the program officially ended due to changes in health care regulations and their relationship to higher education. Following a private September 2018 meeting with all EU students in the attendant care program, then Edinboro University Interim President Dr. Michael Hannan wrote in an email: “These personal care services, which are currently provided by University employees, will be provided by community-based, attendant care providers, and qualifying costs will be covered by a federal waiver system. Edinboro University will not be eligible to receive these direct-care waivers and therefore will not be able to provide these services directly to those students.” 

A press release on Edinboro.edu expanded on this change, stating that the “regulatory environment has changed dramatically over time, and those changes will impede the University’s ability to directly offer this program after the current academic year,” but countered with the promise that the university “will maintain support in many other ways at a level that is well beyond that provided by most colleges and universities.”

Previously, the attendant care program consisted of occupational therapy, wheelchair repair services, both student and professional personal care attendants (PCAs), meal aides, and attending to hygiene needs. Related services that were retained include van transportation, the ‘Boro Autism Support Initiative for Success (BASIS program), academic aides, assistive technology, peer advising and access to a writing specialist.

For students, the cost of the previous attendant care program was lumped in with tuition as a program of the university. 

Now, federal waivers through Medicaid are distributed to various home states of students and disbursed to state agencies such as Pennsylvania’s Office of Vocational Rehabilitation (OVR), New York’s NY Access, and the Office of Long Term Living (OLTL). These waivers are personalized depending on the funding needs of the student, much like with federal financial aid packages, and they are what primarily funded the OAS attendant care program. Since Edinboro was no longer eligible to receive those waivers, a significant amount of funding was lost and rendered the program unfeasible. Private agencies now receive the funding from states on behalf of the students, so costs have remained similar for most, as long as their personal care aides are doing roughly the same amount of work as aides previously part of attendant care.  

There are over 350 students enrolled in overall OAS services at Edinboro, and there were 35 enrolled in attendant care last year. Now, there are 23 enrolled in similar services due to five students graduating, one student taking classes online, and six leaving EU altogether. 

The adjustment period

Students were notified after the beginning of classes in the fall 2018 semester that by the following year, they could no longer rely on EU attendant care for caregiving needs. They would have 11 months to sort out their accommodations with a private personal care agency of their choosing for the following year.

It was agreed unanimously by the six students interviewed by The Spectator — who were all previously utilizing the attendant care program — that they felt they “were not adequately informed of this change.” Students referenced the Edinboro administration being aware of what was happening well ahead of time, along with the announcement taking place after the “add/drop” period for classes that semester.

In addition, the initial language used was misconstrued. “They told us that the PC (personal care) program was ending, but it was not so much that, as it was just outsourcing. Now, we basically have the same exact program as we had, but just with an outside company,” said Colleen O’Neal, a geosciences major set to graduate this December.

“The trouble was with how everything happened. I’ve actually, for a while, been a proponent of a system like this because you have a number of students with disabilities here that are receiving the total package while they’re here, but not being prepared at all for life after college” said Kyle Hurysz, a senior economics and political science major, along with being the Edinboro University student trustee. 

He continued: “Sure, there was about a year to make the transition, but I really think some kind of phasing out program would’ve been better, just because you basically were promised a service, and the implied promise was that it would be here for your entire college experience. Again, for better or worse, that was the promise.”  

Not wanting to leave students on their own to navigate the intricacies of arranging care, the university partnered with A Bridge to Independence (ABI), a concierge-like agency that directs students to various attendant care coordinator companies. Bayada, a personal care agency that was recommended through the school to students, and ABI, both have an office space in Towers where students can meet in person and receive assistance in applying for needs. Many of the students receive care through Bayada, but were not required to do so. 

“The point of working with them (ABI) was they could bring multiple agencies together to provide cluster care. Some students wanted the cluster care because they needed the 24-hour care,” said Dr. Stacie Wolbert, associate vice president for student affairs. This means that students had the option to have their own individual care providers, as well as a handful of care attendants from an agency such as Bayada that would be available to help students on an as-needed basis, similar to the attendant care program.  

In addition, informational sessions regarding arranging personal care, how to find a quality care provider, how to interview a service provider, and how to fire a service were offered to students.

However, students cited several issues: delays and gaps in communication when it came to questions about the changes, the challenge of arranging care in time for the fall 2019 semester on top of managing school work, and the issue of insurance and waivers being processed.

For Latif Ba, a computer science major, it was not confirmed until the middle of summer 2019 that his care was set for fall. Ba used service provider Community Resource for Independence (CRI), but had issues because it’s a Pennsylvania based company and Ba is a New York resident. As a result, there was a series of forms to send in from ABI so that his insurance would cover it. It took over a month to get those sent to his insurance by ABI.  

O’Neal also experienced challenges in arranging care, as it took longer for her insurance to go through and impacted her financially. “I just set up outside services and that meant that my services weren’t in order until mid-October, so I had to pay my caregiver out of pocket for about a month and a half. I spent close to $800.”  

Despite these new challenges, students interviewed do feel that the care they have now is the same, if not often better than the original attendant care program. They no longer have to worry about sharing a small handful of aides with 30 other students at the same time, and they have the freedom to develop their own care schedule, change care if they need to, choose their own aides, have more freedom in housing, and can even travel with aides off-campus if offered in their care agreements.  

Although it was difficult for many students to lose the personal care aides from the original program, which had been taking care of them for the last one to four years, students are building new, quality relationships with care aides.

“The relationships that I had in the original program — I built them over the course of three years. They were my second family; they were there when I went through my hardships and difficulties,” said Cheyenne Naylor, an early childhood education major. 

Meanwhile, other students hired friends to help provide aid.  

Ba balances his care between a personal care assistant provided to him by CRI, whom he was previously friends with, and a friend he had made from the meal aide service. 

“In retrospect, you shouldn’t really hire your friends but it worked out...It’s not like I don’t like my care!” Ba said, laughing. “But it (the new arrangement) keeps everything very professional and you don’t feel like you’re burdening people. “

The first inklings of change 

According to a Pittsburgh Post-Gazette report on May 4, 2019, Edinboro “as far back as 2013 was talking with the state about changes to the program.” The Pittsburgh paper also referenced “losses at one point of half a million dollars on a $1.7 million budget, a gap later pared to roughly $19,000.” Meanwhile, actions such as the termination of the in-house occupational therapist position and laying off personal care aides over the course of the 2017 and 2018 semesters were just a few indicators of the coming changes.  

Eileen Michaels, former occupational therapist at Edinboro University, began working there in 1992. 

“The occupational therapist position was there to really help students be as independent as possible within the college setting and to also help them stay well,” said Michaels. She worked individually, as well as in groups, with students on skills such as cooking, mobility and adaptive equipment.  

In her last few years, she noticed a lack of support from the university and a pressure to continually justify costs. The original goal of giving students the same college experience as an able-bodied student through facilitating independence and integration was lost toward the end of the program, according to Michaels. 

As she explained, “They (disabled students) were much more isolated, and it was a lot more about medically what they needed, and I think that kind of made the program different toward the end.”  

Michaels was notified by letter in the summer of 2017 that her position was terminated. 

She described her experience working with the program as the “job of the lifetime.” 

“I loved working there because you could help students, and in the beginning, it was just doing what the students needed: help them be independent.” 

Michaels was able to find another job. She continues to keep in touch with past EU students through social media.  

Also, around this time, the program name itself changed from OSD (Office for Students with Disabilities) to OAS (Office of Accessibility Services). Although the logic behind the name change was to be more inclusive, it had an unintended effect which echoed larger concerns: a feeling of erasure amongst some students and that this was a ploy to phase out services for students with disabilities.

Naylor believed that OSD was a name that represented who they were: “I came to this school because it was one of the only schools that prided itself on its disabled community and offered such a program for students of the disabled community to be independent.”

To other students, such as Jordie Nolan, a senior sociology major, it was just a name change. “Just because the word ‘disability’ is no longer used, it doesn’t mean we’re not disabled...[Also] I don’t view myself as disabled, because if you view yourself as disabled, your life is going to be a disabling life.”  

A different side of campus

Until this fall, students with caregiving needs were mainly housed in Rose Hall, a traditional dorm with shared bathrooms, access to different gathering and study rooms (including one used for occupational therapy and wheelchair repairs), as well as a food court on the bottom floor. Other students stayed in Earp, a dormitory which also housed honors students and was located next to Rose so that students had easy access to care.

The dissolution of the attendant care program, along with the closing of Rose, led to students choosing between three on-campus, ADA compliant housing options: Towers, Highlands 3 and Highlands 5. Currently, 10 students live in Towers, nine in the Highlands and four live off-campus.  

This adjustment was intended to re-integrate students with disabilities among the larger campus community. Ideally, this arrangement more so requires this population to leave their buildings for meals and encourages greater interaction between all students. And as noted by Wolbert, participation in clubs and organizations by students with disabilities has actually increased this year.  

“Before, we did not realize how isolated that population of students had become, and some of them prefer it and that’s fine...They were eating all their meals in Rose Hall, they weren’t doing social activities unless it was with that population of students, and they weren’t really mingling with the rest of campus and having the college experience they really came for,” she explained.  

 “One of the students told me that at first, they were really afraid, but this is the best thing that happened because they’re really a part of campus.”  

For Nolan, this intention was fulfilled and he fully agrees. “When they moved us from Rose to Towers, it was like a brand new college experience because where Rose was, you were all by yourself. 

He added, “It’s a bit more hectic here, but I love it. I’ve definitely made a lot more friends living on this side.”  

However, not all students interviewed share that perspective. Fox and O’Neal actually feel more isolated by the location,  believing the integration has contributed to a scattering of their community. Previously, this population had a designated place to hang out. No longer.

“I would much rather be in Rose at the center of campus with more opportunity to interact with other people,” said Fox.

Fox is also concerned about accessibility, considering there is a slight incline leading up to Towers. That, combined with the snow, can make it difficult to traverse there. 

“Yesterday, I got stuck three times in the snow and I had to flag three people down to help me.” 

For next semester, Fox is considering moving off-campus.

Hurysz described his experiences living off-campus as “cool,” but also cited disadvantages of “not necessarily [being] part of a larger community anymore.” 

However, Hurysz finds the experience to be more realistic and believes it’s helping him to prepare for life after school. 

“People don’t live in huge campus-like communities after college, so I feel like it’s just another natural transition to go through,” he said. 

Regarding the in-house services still offered, students talked positively about them with one exception: transportation. There are two accessible vans that run from 7:30 a.m. to 9:30 p.m., from Monday to Thursday, and 7:30 a.m. to 6:30 p.m. on Friday. Students are charged $3,500 a semester to use them.  

“I only use it when it’s snowing and I have to go a long way. I use the van five or six times a semester, so that [price] is a bit steep,” said Ba. 

Students cited difficulty in contacting the vans, possible wait times of more than 30 minutes, and the absence of the vans on weekends, which makes going out and about in Edinboro’s often inclement winter weather tough.

“I feel like it’s more difficult to get in contact with them now than what it was. We used to have a radio to contact the van drivers in the PC (personal care) room, but now we have to go through a series of phone calls to get through. Sometimes the lines are busy or they just don’t pick up,” explained O’Neal.  

Vans are also not permitted to take students off-campus, which has been a great concern to Naylor.

“With my particular major, that affects me a lot. I go to field every semester and it starts second semester of sophomore year. Now I have to rely on public transportation and that worries me because it is just not reliable.” 

Edinboro still delivers 

Despite hiccups in the announcement and transition of services, all six students interviewed believed they still had an overall positive experience at Edinboro. The students interviewed said their time with the OAS program was worthwhile and they do like the new care they receive now.  

“Having things living up to your expectations is boring. It doesn’t foster any personal growth. It’s only when life throws challenges at you that you actually grow as a person and figure out how to adapt to situations. So, in short, no it hasn’t lived up to my expectations, but that’s not a bad thing necessarily,” said Hurysz.

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