In today's Chicago Tribune

[Guest guest]

Very interesting story in today's Trib.

Marie

CHAMPAIGN — With very limited use of her arms and legs, Kelsey Rozema has needed

her parents' help with most daily tasks — getting out of bed, showering, putting

on a coat and even opening a water bottle. In 18 years, they've been apart for

only six nights.

So moving into a college dorm this week — and away from the reliance on her

family — is even more of a milestone for Rozema than for the thousands of other

wide-eyed freshmen arriving this week at the University of Illinois, a ritual

that will be repeated on college campuses throughout the country in coming

weeks.

It helped that she moved into the university's first new residence hall in 44

years and the most user-friendly dorm in the country for students with severe

physical disabilities. As Rozema wheeled into her single room for the first time

Tuesday, a disability advocate showed off the features: a wireless pager that

will call for help 24 hours a day and a remote-controlled ceiling lift system to

transport her from her bed to the in-room bathroom.

" That's cool, Kelsey. You will be sailing through here, " said her mother, ,

taking a break from carefully tucking orange and turquoise sheets into her

daughter's bed. After several tries, she gave up on getting a dust ruffle to fit

on the hospital-style bed.

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As much as moving into Nugent Hall was a remarkable accomplishment for Rozema,

it also was momentous for the U. of I. Already recognized as a front-runner in

disability services for students, the U. of I. dorm will allow students with the

most severe disabilities — all use motorized wheelchairs or scooters — to get

the personalized care they need while being integrated with typical students.

They will live on the first floor, with about 150 other students on the floors

above them, a number that will expand to 500 when the dorm is completed in two

years. The building is connected to a new dining hall, convenience store and

meeting spaces.

Down the hall from Rozema, Ben Fultz, 21, a transfer student with cerebral

palsy, also moved in Tuesday. His mother, Ellen, was overwhelmed by the

features, remarking how even the window blinds can be closed with a button. " It

is truly better than what we have at home, " she said.

The sinks, thermostats and light switches are at an accessible height. Dorm room

doors open by waving a wireless card. Faucets are sensor-activated. And the

roll-in showers come with chairs.

But most unique are the personal assistants, known as PAs, who live in the

building to help students shower, use the bathroom and hook backpacks on their

wheelchairs before leaving for class. Most are U. of I. students. After the

Rozemas accidentally hit the pager while putting away books Tuesday, a PA

arrived in under two minutes. " Did you buzz? " she asked.

Through the program, residents learn how to hire, schedule and manage their PAs.

In a newsletter last year about the life-changing program, one resident observed

that students could have conversations like, " Which PA wipes the best after you

use the bathroom? "

All of the features make Rozema feel slightly more at ease about being

separated from her only child.

" My worst fear as a mom is, what if she is just lying there and needs help? " she

said.

Kelsey Rozema acknowledged having some last-minute anxiety before leaving

southwest suburban New Lenox for Champaign. " I wasn't worried until last night,

and I was like, 'I am leaving home. I am leaving my parents,' " said Rozema, who

plans to major in English and art history.

In all, 17 students with severe physical disabilities will live this year on the

first floor of the new hall, named for Tim Nugent, who in 1948 founded the

university's division of disability services, the first higher education program

of its kind in the world.

" It is a remarkable statement about the commitment of this campus to ensure that

those who are most marginalized in their access, if they have the desire and the

capacity and the willingness to pursue a degree … Illinois is committed to

making that a reality, " said Brad Hedrick, director of the university's

disability services.

The opening of the dorm continues the U. of I.'s legacy of making college

accessible: It was the first college to introduce curb cuts, offer bus routes

equipped with wheelchair lifts and have a wheelchair sports program.

There are only about five U.S. colleges that offer some kind of personal

assistant services, and until now, U. of I. students with severe disabilities

lived in a stand-alone facility called Beckwith Hall.

Students at other colleges hire assistants through a private agency — or stay

close to home for school. Most campuses set aside dorm space for students who

use wheelchairs or have significant disabilities, similar to a hotel, said

Allegra of the Association on Higher Education and Disability.

Allegra called the U. of I.'s program " a rare concept. "

Students get five hours of PA help a day and can schedule the hours around their

classes and social life.

That will be a change for Fultz, who previously studied at the University of

Rochester. He said it was difficult to find an assistant willing to help him get

to bed after 9 p.m. The aides were more accustomed to the schedules of elderly

clients than college students.

U. of I. students pay the standard $11,000 for room and board, and then about

$18,000 for the support services. Costs may be covered through the state's

vocational rehabilitation program.

Kelsey Rozema said she will rotate between about a half-dozen personal

assistants who she scheduled to help with bathroom breaks, showering and getting

in and out of bed. The goal is for students to learn independent living skills

and transition to more mainstream housing, whether on a higher floor, in a

different dorm or to an apartment.

Born with a rare brittle bone disease, Rozema has had more than 300 fractures in

her life, starting with a femur fracture in utero. She speaks nonchalantly about

the broken bones — " just a couple of broken ribs in the last couple of months " —

but she also packed codeine because the pain from just moving out of her

wheelchair can be hard to bear.

After spending the morning unpacking, the Rozemas went to the adjacent dining

hall, where the fountain drink station is at a height Kelsey can reach. Out of

routine, began pouring soup into her bowl before realizing it was at an

accessible height.

" Here, get your own soup, " she said.

The family then sat down to eat. After focusing all morning on arranging

Kelsey's books, clothes, makeup and posters in her room, unexpectedly

became overwhelmed with emotion as she looked to her daughter.

" I promised I wouldn't do it, " she said, putting a napkin up to her nose and

mouth and looking away to stifle the tears.

" Don't make me cry, " Kelsey said.

Her mom couldn't help it and turned back to Kelsey. " This is what I always

dreamed of, for you to one day go to college. I am so proud of you. "