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Spinal Cord Injury Paralysis Resource Center

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Back-to-School:
What it Means When You're Using a Wheelchair

Arielle Rausin and her friends

School spirit!
Arielle Rausin and her friends

By: Janelle LoBello

Back-to-school supplies include books, pencils, new clothes and for some, wheelchairs. Here are some insights from professionals, parents, and students of all ages who will be hearing the school bell ring this coming fall.

K - 8th grade adjustments
The implicit assumption would be that everyone would make a student's experience in school as easy and comfortable as possible. In order to ensure that happens, Melissa Pitts, mother of nine-year-old twin boys, Ryan and Alex, (Alex was born a quadriplegic,) emphasizes communication.  "Set up a full team meeting in the classroom," suggests Pitts, "with the parents, teacher, principle, nurse, and student. The communication is key to make sure everything is set up ahead of time."

"Have one person you feel comfortable with," says Pitts, "whether it be the nurse, a teacher, or a guidance counselor. That can be your go-to person; someone responsible for coordination."

In addition to a meeting before the school year begins, Pitts also suggests a meeting at the end of the school year to discuss and prepare the following year.

Soon-to-be third grader, Alex Pitts

Soon-to-be third grader, Alex Pitts

Aside from communication between authorities and parents, communication within the classroom is also important. "We have Alex and Ryan in different classes," says Pitts. "We split them more so for Ryan than Alex, so Ryan doesn't have to feel responsible for Alex. We also don't want Alex to depend on Ryan. We're trying to make Alex as independent as possible. He knows if he needs help to ask."

Transportation to and from school for students in wheelchairs is a decision parents have to make. Is it easier for the student to take a bus or be driven by the parent? The school in Pennsylvania, in which Pitts' sons attend, is responsible for bussing. "Alex is picked up, and someone meets him outside school when he gets there, and helps him pack up at the end of the day," explains Pitts.

In order to ease the experience in the classroom, Pitts recommends buying functional school supplies. "Any pencils, markers, erasers, scissors that have a bigger grip work well," explains Pitts. "Or even the spongey grips for a pencil. I take Alex with me so he can try the things out before we buy them."

Antonia Sinibaldi will be entering the 6th grade come fall 2009

Antonia Sinibaldi will be entering the 6th grade come fall 2009

Antonia Sinibaldi, age 12, entering 6th grade in northern New Jersey, is "excited for school to start, but angry I can't sleep late anymore." says Sinibaldi, 12. Sinibaldi, who suffered a C2 – C5 spinal cord injury in a car accident when she was 2, was absent only once from school in 5th grade. She considers herself to be a "normal preteen girl" and says teachers shouldn't worry about her wheelchair. "Do your normal boring teacher stuff," laughs Sinibaldi, whose favorite subjects are music, science, and French. "I just go with the flow and chillax!"
 
Arielle Rausin – Rolling into her sophomore year
Transitioning into high school comes with unknown questions and answers for everyone. Krista Rausin, mother of Arielle, who suffered a T11 spinal cord injury in a car accident at 10-years-old, describes it as a challenge. "No one knows her history," says Rausin. "They are all wondering why she's in the chair. She goes through a transition time where kids and teachers eventually see her and not the wheelchair."

"I've made a joke out of it by coming up with some exciting and elaborate story about how I broke my spinal cord," laughs Arielle, entering her sophomore of high school in Florida. "Rather than just a boring car crash, I've said ski accidents, or attacked by a bear on a camping trip. It's crazy what people will believe."

Arielle Rausin going to Homecoming

Arielle Rausin at Homecoming.

For Arielle, going to school in a wheelchair isn't much different than prior to her injury. "There are certainly more challenges," says Arielle, "like reaching for trays and silverware in the lunch line. Or finding time to go to the bathroom in between classes, or just getting to class on time! I go to a big school with only one elevator."

Arielle doesn't let her wheelchair stop her from being active. "I am involved in track, which I love," explains Arielle. "And this year, I am in marching band. The wheelchair gives me a unique edge when I have to audition or try out for anything. The downside is sometimes people are afraid of change. So they will not let me participate in certain activities."

Often times, Arielle's wheelchair is a helpful conversation starter. "They see me do a wheelie, for example, and think its cool," says Arielle. "They want to know how I do it. Or sometimes, if I'm going up a hill, a complete stranger will give me a little push to the top. A friendship begins from that."

"I just try to make the best of it," says Arielle. "And be like everyone else in high school. I just go with the flow. I'm always more excited than scared to start a new class."

Starting in fall 2009, Mackenzie Clare will start a new year in a new school as a freshman

MacKenzie Clare with her parents on vacation

MacKenzie Clare – Fresh start in freshman year
When MacKenzie Clare, now 14, was injured in a car accident in April 2005, she spent almost 3 months in the hospital. In order to finish 4th grade, teachers would come to the hospital and her home during the summer after Mackenzie was released.

"When I went into 5th grade, all of my classmates had known me before I was in a wheelchair," explains Clare. "So they treated me the same. I didn't have to explain what had happened and why."

The Clare family moved into a more accessible home after the accident, but it was outside their old school district. MacKenzie's mother, Lisa, sought and received special permission from the school districts in Virginia to keep MacKenzie with her classmates.
"Staying with the same group of kids makes the transition much easier for her," says Lisa of MacKenzie entering her freshman year at a high school of approximately 2,200 students in fall 2009. 

"For the four years I have been at school in a wheelchair, the teachers and staff have been wonderful," says MacKenzie. "They bring in a desk that I can fit under and they make my locker accessible. The nurses are great with helping me when I need it, and my teachers have been friendly and accepting of any needs I might ask for."

Making her school days a bit easier, MacKenzie has hard copies of all her textbooks both at home and in school so she doesn't have to constantly carry them.

Academically, MacKenzie says, "I can't wait to go to college. I would consider myself smart. I am no brain surgeon, but I have a good memory and am a good listener."

College senior, Corey Mineo encourages visiting potential college choices

College senior, Corey Mineo encourages visiting potential college choices

Big wheelchair on campus
Corey Mineo, a 21-year-old senior psychology major at the University of Colorado Denver (UC Denver), knows about living a college life in a wheelchair firsthand. Diagnosed at age one-and-a-half with Muscular Dystrophy and Charcot Marie Tooth, Mineo urges that preparation is the most important aspect of getting ready for college.

Before attending UC Denver, Mineo studied at a local college. "I decided to go to a two- year community college (Colorado Mountain College)," explains Mineo, "It is much more personal and really helped me to transition. I didn't feel it was best to go right into a big university. It was a big step, it helped build a drive to go to the next level."

Accommodations for students at UC Denver can be made at any time throughout the year, according to Lisa McGill, Director of Disability Resources and Services (DRS). In order to receive accommodations, the student in need of help must go through a two-step process. "We interview them first and take a look at their medical history," explains McGill, "and then we collaborate and determine how to give the student a proper and equal education. But it is up to them to do the work."

"The university provides assistance with aides, alternate forms of textbooks or testing procedures, assistive technology, note taking services, and special furniture.

Living arrangements, if living on campus, can also be arranged to fit the needs of a student in a wheelchair. "We have integrated residence halls for all students," says McGill. "We can modify a room to a person if they are paraplegic for example. Someone might need a refrigerator where the freezer is on the bottom instead of the top." Wheelchair users are active participants in the process of working with the university to meet their specified living needs.

Mineo encourages not being afraid to ask for help. When moving on campus, the university was "obligated" to put wooden flooring and other arrangements in Mineo's dorm. "It was a collaborative process," says Mineo. "It was as much me as it was them."

"The campus itself is accommodating in terms of attitude and accessibility," says McGill. "It depends more on the person than the wheelchair."

Carmen Sutherland of the University of Illinois is a graduate student intern at the university's Disability Resources and Educational Services. "Planning ahead for whatever you want to be included in your life is imperative," explains Sutherland, born with cerebral palsy, "as is making a conscious decision to include various activities in your day, such as, academic, extracurricular and personal activities. This also means that is important to be creative and flexible on a daily basis."

From a student's perspective, Sutherland believes living away at school is a better option than commuting, if possible. "Many students with physical disabilities get an extra boost in terms of independence," she says.

An accessible campus
Whether living on campus or commuting, accessibility of the campus is most important. Kevin Shields, director of the Disabled Students' Residence Program (DSRP) at The University of California at Berkeley, suggests being aware of anything that might present a challenge. "Make sure you plan for all your needs, such as attendant care, restroom needs and meal assistance," says Shields.

"Be prepared for difficulties with professors when you want special accommodation," suggests Shields. "Go up to the professor the first day, or earlier if possible, to explain your disability and come to an agreement of any accommodations you will need."

"Visit colleges," stresses UC Denver's Mineo on the importance of accessibility. "Get a feel for the people. Don't be afraid to ask questions. Ask what you want, even is it's weird like, ‘How do I get my books to class?' Make them show you everything." Touring a college and its environment will allow you to see what will make it work.

Wheelchair users should find the most accessible routes to all of their classes. Taking a few days before class to learn the routes will "provide the opportunity to have classes moved if they are not in an accessible location," says Shields. "If the school does not have something you need, such as: a ramp, a map of accessible routes, a disabled students union, or an attendant referral service, use the school's resources to make one."

If living away at school, Shield's suggests finding the nearest wheelchair repair shop within the area. "Call them up or stop by," explains Shields, "to find out if they take your insurance and carry your brand of equipment and parts."

DSRP students living on campus are housed amongst six buildings with the general student population. "We do not want the students segregated into a ‘cripple' ward," says Shields.

If commuting to school, transportation has to be arranged. "Contact the para-transit services in your area," suggests Shields. Inquire how far you can be taken, rates, and in which locations on and off campus they are available to pick you up.

 "College is more than a set of classes with a degree waiting at the end of the tunnel," says Shields. "Our program levels the academic playing field as much as possible so that students can use this time of their lives to the fullest."

Learn More
Learn more about learning! Click here for a fact sheet on education from the Paralysis Resource Center.

Association of University Centers on Disabilities61 centers of excellence for developmental disabilities

Education/TrainingAssociation on Higher Education and Disability (AHEAD).

HEATHGeorge Washington University’s Heath Resource Center is a national clearinghouse on postsecondary education for people with disabilities. See their 2006 Financial Aid for Individuals with Disabilities

FacingDisability.comFacing Disability is a web resource with more than 1,000 videos drawn from interviews of people with spinal cord injuries, their families, caregivers and experts. I know that this is a lot to ask, but we'd be so grateful for your help. I'm looking forward to discussing this link with you, and to answering any questions you may have.

The Office of Special Education and Rehabilitative ServicesThe Office of Special Education and Rehabilitative Services (OSERS) is committed to improving results and outcomes for people with disabilities of all ages.

The Office of Special Education ProgramsSupports numerous programs that improve results for children.

Through the Looking GlassThe purpose of the National Parent-to-Parent Network at Through the Looking Glass is to connect parents, as well as those who are considering becoming parents, with others who may have shared similar experiences or faced common barriers as parents with disabilities.

Paralysis Resource Center The Reeve Foundation Paralysis Resource Center Information Specialists are reachable business weekdays, Monday through Friday, toll-free at 800-539-7309 from 9:00 am to 5:00 pm ET. You may also schedule a call or send a message online.

Reeve Foundation Online Paralysis Community Connecting people living with paralysis, families, friends and caregivers so we can share support, experience, knowledge, and hope.

Quality of Life Grants DatabaseFind resources within the PRC Quality of Life Grants Database. Search by Zip Code, State or an Entire Category.

Library Books and VideosFind resources within the PRC library catalog.

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The Reeve Foundation Paralysis Resource Center Information Specialists are reachable business weekdays, Monday through Friday, toll-free at 800-539-7309 from 9:00 am to 5:00 pm Eastern U.S. Time. International callers use 973-467-8270. You may also schedule a call or send a message online.

This project was supported, in part by grant number 90PR3001, from the U.S. Administration for Community Living, Department of Health and Human Services, Washington, D.C. 20201. Grantees undertaking projects under government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official Administration for Community Living policy.