Going Away to College!
By Shannon O’Brien
The thought of going away to college can be a scary thought for anyone especially if you are a
person with a disability and rely on family members or personal assistants to assist in daily
living. My name is Shannon O’Brien and I have SMA type III. I know this thought definitely
crossed my mind a few times when I thought about college but I never let it stop me from
achieving my dream of actually going away to college! Since I was a little girl I always knew I
wanted to go to a big university and move away from home! As I began to grow older and start
thinking about college my choices ranged from Illinois (my home state) to Iowa to California and
even Arizona!
After beginning to look into schools I realized right away that the University of Illinois was the
right choice for me! Not only is it a top ranked school for academics but it is one of the most
accessible schools in the nation. How could I not choose it? I am now a junior at the University
of Illinois in Champaign and I am studying to become a speech language pathologist. One of
the main reasons I picked U of I was because they offer an entire dorm for people with
disabilities and they help you by prescreening and training personal assistants who you then get
to pick and choose the ones who work well with you. They also have a floater on call 24 hours a
day who helps you do little things throughout the day or in case your personal assistant does
not show up. This helps out a lot because going away to school can be very stressful and
adding on the stress of finding your own personal assistants that are reliable is a whole other
story. I know for myself, I have never had anyone else take care of my personal needs other
than family and friends therefore it took some adjusting and getting use to but trust me, it did not
take long!
Once I was moved in and my parents left I felt like a whole new person. Instead of being scared
and upset I just felt really independent. I no longer had to rely on them to take care of my
personal needs or to take me any where I needed to go. Living on a big college campus makes
life a lot easier, especially one that is really accessible. I think the best part about living away
from home is the freedom you have to do whatever it is that you want. Whether it is taking the
bus to the mall, meeting friends at the library to study or even walking down the street to hit up
the different campus bars, there is always something to do and it is no longer impossible for me
to do it without the help of someone else. The best advice I can give to anyone who is looking
into going away to college is to explore all your options and make sure you feel comfortable with
your decisions. Even though it may seem hard to move away from home and be on your own it
is also rewarding and can give you a new found independence!
Presenter’s Qualifications
Ø
ØFive
Fiveuniversities
universities(but
(butonly
only two
twodegrees
degrees––don’t
don’t ask)
ask)
Ø
Ø 88different
differenthired
hiredattendants
attendants
Ø
Ø Lived
Livedon
onand
andoff-campus
off-campus
Ø
Ø Been
Beenfull-time,
full-time, part-time
part-timeand
and“working”
“working”
Ø
Ø Done
Donewell
well and
andpoorly
poorly
Why College?
Ø
Ø Investment
Investment----Sacrifice
Sacrificeaafew
fewyears
years of
ofpay
payfor
for larger
larger
long-term
long-term salary
salary
Ø
Ø More
MoreOptions
Options
Ø
Ø Knowledge
Knowledge and
andExperience
Experience
Ø
Ø Networking
Networking
Ø
ØIndependence
Independence !!
The Old Work World
Ø
Ø Factories
Factories
Ø
Ø Sweaty
Sweatybrutes
bruteswith
withmallets
mallets
Ø
Ø Lifting
Liftingthings
things
Ø
Ø Carrying
Carryingthings
things
Ø
Ø Building
Buildingthings
things
Ø
Ø Fixing
Fixingthings
things
Ø
Ø Mostly
Mostlyphysical
physical work
workthat
that
most
most people
peoplecould
couldlearn
learnto
todo
do
SMA
unfriendly
The New Work World
Ø
Ø Computers
Computers
Ø
Ø Cubicles
Cubicles
Ø
Ø Designing
Designing
Ø
Ø Analyzing
Analyzing
Ø
Ø Supervising
Supervising
Ø
ØIfIfyou
youcan
canblink
blinkan
aneye,
eye, you
you
can
canwork
work
Ø
Ø Mostly
Mostlymental
mentalwork
workthat
that isis
harder
harder for
forpeople
peopleto
tolearn
learn
SMA friendly
What Does This Mean for the
Adult with SMA?
Productivity and Self-Reliance =
Self-Esteem and Happiness*
*(in other words, money can’t buy happiness, but it sure
does help)
Choosing a College
Criteria for Choosing
ØCareer
ØCareer and
and Major
Major
ØLocation
ØLocation
ØCost
ØCost
ØMedical
ØMedical Needs
Needs
ØAttendant
ØAttendant Care
Care
ØFamily
ØFamily
Considering a Career
Ø
Ø
Ø
Ø
Ø
Ø
Ø
Ø
Ø
Ø
Ø
Ø
What
Whatdo
doyou
youwant
wantto
tobe
bewhen
whenyou
yougrow
growup?
up?
What
Whatkind
kindof
ofthings
thingscan
canyou
youdo
dowell?
well?
Intellectual
Intellectual vs.
vs. Physical
Physical
Realistic
Realistic logistical
logisticalconcerns
concerns
Find
Findaaway
wayto
tobe
beinvolved
involvedin
inan
aninterest
interest area
area
Go
Govisit
visit someone
someonewho
whodoes
does the
thework!
work!
Location Considerations
Ø
Ø Physical/medical
Physical/medicalneeds
needs
Ø
Ø Other
Other nearby
nearbyrelatives
relatives or
orfriends
friendsfor
for “backup”
“backup”
Ø
Ø Finances
Finances
Ø
Ø Attendant
Attendant care
care
Ø
Ø Transportation
Transportation
Ø
Ø Visit
Visit candidates
candidates
College Location Choices
ØØ Online
OnlineDegrees
Degrees(increasing
(increasingininreputability)
reputability)
ØØ Pro:
Pro:cheaper,
cheaper,good
goodfor
forhome-bound
home-bound
ØØ Con:
Con:less
lessmarketable,
marketable,fewer
fewerchoices
choices
ØØ Commuting
Commutingfrom
fromhome
home
ØØ Pro:
Pro:cheaper,
cheaper,attendant
attendantcare,
care,parents
parentsdon’t
don’thave
havepanic
panicattack
attack
ØØ Con:
Con:missing
missingsome
somecollege
collegelife,
life,may
maynot
notget
getchoice
choice
ØØ Going
Goingaway,
away,but
butclose
close
ØØ Pro:
Pro:more
morechoices,
choices,people
peoplenearby
nearbytotohelp,
help,college
collegelife
life
ØØ Cons:
Cons:still
stilllimits
limitschoices,
choices,expense,
expense,attendant
attendantcare
care
ØØ Going
Goingaway,
away,but
butfar
far
ØØ Pros:
Pros:many
manymore
morechoices,
choices,can
cangive
giveparents
parentspanic
panicattack
attack
ØØ Cons:
Cons:expense,
expense,attendant
attendantcare,
care,can
canbe
bescary
scary
Finances
Ø
Ø College
Collegecan
canbe
bemore
moreexpensive
expensivefor
for disabled
disabled
Ø
Ø Attendant
Attendant //Nursing
Nursingcare
care
Ø
Ø Transportation
Transportation
Ø
Ø Housing
Housing
Funding
ØØ Scholarships
Scholarships
ØØ Investigate
Investigateand
andplan
planearly
early
ØØ Maintain
Maintaingood
goodgrades
grades
ØØ Pell
PellGrants
Grants
ØØ Limit
Limitto
toamount
amount
ØØ Income
Incomedependent
dependent
ØØ Guaranteed
GuaranteedLoans
Loans(e.g.
(e.g.Stafford)
Stafford)
ØØ Family
Family//Pre-paid
Pre-paid
ØØ Job
Job
ØØ On-campus
On-campus
Medical Care
Ø
Ø University
Universityresources
resources
ØØ Usually
Usuallyunfamiliar
unfamiliarwith
withSMA
SMA
ØØ Free
Freeto
tostudents
students
Ø
Ø Nearby
Nearbyspecialists
specialists
Ø
Ø Wheelchair
Wheelchair // Equipment
Equipment
ØØ Supply
Supply
ØØ Repair
Repair
Preparing for College
Things to Do
ØØ
ØØ
Interview
Interviewattendants
attendants
Check
Checkaccessibility
accessibility
ØØ Dormitory
Dormitory
ØØ Classrooms
Classrooms
ØØ Professor
Professor/ /Department
DepartmentOffices
Offices
ØØ Common
CommonAreas
Areas(cafeteria,
(cafeteria,library,
library,student
studentunion,
union,etc.)
etc.)
ØØ Make
Make“Dry
“DryRuns”
Runs”
ØØ
ØØ
ØØ
ØØ Attendant
Attendant
ØØ Schedule
Schedule
Arrive
Arriveas
asearly
earlyas
asallowed
allowed
Find
FindDisability
DisabilityResources
Resourcesoffice
office
Visit
Visitprofessors
professors
Attendants
Attendants
Ø
Ø Finding
Finding
Ø
Ø Interviewing
Interviewing
Ø
Ø Managing
Managing
Ø
Ø Paying
Paying
Ø
Ø Keeping
Keeping
Finding Attendants
Ø
Ø Friends
Friendsfrom
from High
HighSchool
School
Ø
Ø Camp
Campattendants
attendants
Ø
Ø Medical
Medical//Nursing
Nursing//PT
PTstudents
students
Ø
Ø Ask
AskOther
OtherDisabled
DisabledStudents
Students(share?)
(share?)
Ø
Ø Advertise
Advertise(Newspaper,
(Newspaper,Craigslist,
Craigslist, etc.)
etc.)
Ø
Ø Agency
Agency
Interviewing Attendants
ØØ Mutual
Mutualcomfort
comfort
ØØ Go
Gothrough
throughroutine
routine
ØØ Vacations
Vacations/weekends
/weekends
ØØ Time
Timeflexibility
flexibility
ØØ Background
BackgroundChecks
Checks
ØØ Internet
Internet
ØØ Expensive
Expensive
ØØ Find
Find“backups”
“backups”
ØØ Maybe
Maybemultiples
multipleswill
willwork
work
Managing Attendants
Ø
Ø Give
Giveand
andtake
take
Ø
Ø Don’t
Don’t be
betoo
toobossy
bossybut
but don’t
don’t roll
rollover
over either
either
Ø
Ø ItItmay
maytake
takeaafew
fewweeks
weeksto
tosettle
settle
Ø
Ø Give
Giveclear
clear instructions
instructions
Ø
Ø Keep
Keeptrack
trackof
of duties
duties(for
(for aawhile)
while)
Paying Attendants
Ø
ØCheck
Check government
government programs
programs
Ø
ØMedicaid
Medicaid
Ø
ØOther
Other (dig,
(dig,dig,
dig, dig)
dig)
Ø
ØIncome
Incomedependent
dependent
Ø
ØPrivate
Private Insurance
Insurance will
will not
not
Ø
ØCollege
College Disability
Disability Office
Office
Ø
ØSurvey
Survey the
the going
going rate
rate
Ø
ØUncertified
Uncertified are
are cheaper
cheaper
Ø
ØRoom
Room && Board
Board
Keeping / Transitioning
Attendants
Ø Keep relationship balanced
Ø Professional
Ø Friendly
Ø Don’t constantly add duties and tasks
Ø Agree to changes if necessary
Ø Always have a “backup”
Ø For future
Ø Leverage
Ø Allow old attendant to train/advise new one
College Life
Strategies
ØØ Balance
Balance
ØØ Patience
Patience
ØØ Priorities
Priorities
ØØ Studies
Studies
ØØ Extracurricular
Extracurricular
ØØ Social
Social
ØØ Pace
Pace
ØØ Health
Health&&Endurance
Endurance
ØØ Persistence
Persistence
ØØ Networking
Networking
ØØ Clubs
Clubs
ØØ Classmates
Classmates
ØØ Other
Otherdisabled
disabledstudents
students(but
(butnot
notexclusively!)
exclusively!)
Balance
OR
Case Study: SaMAntha
•
•
•
•
•
•
•
16 yrs old, Junior in HS
Wants to be an architect
SMA type II
Can use a computer, good at math, likes art
Lives in Tucson, AZ
She can feed herself, but cannot prepare meals
She can brush teeth, hair, put on make-up, etc. but needs
assistance bathing, dressing, bathrooming, and transferring
• Can use motorized wheelchair to get around fairly
independently, but does not drive a car