Developed by Beth Swedeen
Waisman Center University of Wisconsin–Madison
Wisconsin Healthy
& Ready to Work is a project of the University Center for Excellence in Developmental
Disability at the Waisman Center. Wisconsin HRTW is funded by the Division of
Services for Children with Special Health Needs (DSCSHN) in the Federal Maternal
and Child Health Bureau (MCHB), Health Resource and Services Administration
(HRSA), U.S. Department of Health and Human Services (DHHS)
Updated 4/03
Acknowledgements
The author would like to acknowledge the four young adults featured in our Wisconsin stories: Andrew, Stephanie, Michael, and Andy. They were generous in offering their time, insights, and feedback. Their belief in themselves is inspirational, and their honesty is always refreshing. Also, thanks to their families for providing important background information and for supporting these young people in their participation in this project. Wynne Cook, Pat Kelly, Amy Whitehead and Ray Olderman offered ideas, edits, and direction that resulted in a more compelling set of final stories.
The road to adulthood is rarely
smooth, even for young people who have had the best possible preparation. When
a young person has a significant disability, that journey can be even more challenging.
Work experiences can be harder to come by and require more support. A young
person may have to learn how to manage medications and talk to doctors along
with learning how to cook and balance a checkbook. Inadequate transportation
and long county waiting lists further complicate the ability to live and work
in the community.
In the following pages, you will
meet four young people with very different strengths, gifts, interests and concerns.
However, they all share the desire to live full, productive adult lives where
they can contribute to their communities. All of them also can point to some
key people who have been instrumental in helping shape their dreams into reality.
Their stories are not meant to be
a set of driving directions toward the ideal transition. But hopefully, these
young people’s stories can get readers thinking about a variety of possibilities
they may not have explored before.
“My goal is child
care because I like children – that’s the point. I like working with 3- and
4-year-olds best.” - Andrew
Andrew has had a
clear vision about his future career for a long time. Inspired by his 19 nieces
and nephews, he knows he wants to work in a daycare as a child care assistant.
Andrew, who is 20
and lives in southeastern Wisconsin, has plenty of experience.
He routinely takes
care of seven nieces and nephews at one time. He has volunteered in his county’s
Birth-to-3 program, and volunteers in a local daycare center during the school
year as part of his school program. He also is a junior leader with his 4-H
Club, and helps the beginning members with their foods projects.
Andrew, who has Down
syndrome, started volunteering during his middle school years, when he helped
first graders with their reading. He went on to help teach swimming at the local
pool and to be a volunteer with the local recreation department’s program for
younger children. He also has helped coach basketball.
And one of his volunteer
jobs has led to a paid job. Andrew started volunteering as an interpreter several
years ago at Old World Wisconsin, where he shares information about the old
breed farm animals and antique toys with visitors. But his outgoing personality
and strong work ethic eventually landed him a job in the museum’s restaurant,
where he busses and cleans up.
One of his bosses,
Gary, says Andrew is a great employee in a position where it is hard to retain
good workers. He chats with customers, can meet work deadlines, and is dependable.
“We made a few accommodations
for Andrew at first, and it seems to work very well,” Gary says. “He does best
when we show him exactly how to do a job, so we demonstrated some of the cleaning
jobs for him. We also let him start an hour earlier, because he works a little
slower than other people we have had in this job. But he’s a great employee
and a real asset in the workplace.”
Andrew’s job at Old
World Wisconsin has led to other dreams for his future, including working as
a waiter in a nice restaurant. He also plans to have a girlfriend, own his own
house, and eventually get married. “In ten years, I’ll be married and driving
a Mercedes-Benz convertible,” he says.
“He’s a great
employee and a real asset in the workplace.” – Gary (Andrew’s boss at Old World
Wisconsin)
Like his job at Old
World Wisconsin, Andrew’s child care ambitions started as a volunteer experience
with nieces and nephews: his sister-in-law needed an occasional babysitter.
And as with his cleaning job, Andrew’s sister-in-law found that a few simple
accommodations worked well. She types out directions for Andrew because he works
best with clear expectations and he can’t always read her handwriting.
His father, Enno,
says their family began talking careers early with Andrew. In the past, he’s
wanted to be a football player, a doctor, and a fireman. But Andrew settled
on child care after considering many variables.
“Aside from the fact
he does an excellent job, there’s a need all over the country,” Enno says. “Child
care positions are available in every community, and Andrew could still find
a job while living close by whenever he is ready to move out.”
Enno and his wife,
Bea, have focused on community opportunities and experiences for Andrew since
he was little. The youngest of six children, Andrew got some of his earliest
job experiences – including milking cows – through visiting his grown siblings
at their own homes.
“From the time Andrew
was very, very young, we’ve insisted on full inclusion,” says Bea. “He attended
a Lutheran day school through sixth grade, and then we decided to home school
so Andrew could spend more time out in the community. With a flexible schedule,
he could do academics in the morning and community activities in the afternoon.
That’s why he’s had so much time to volunteer and gain all these wonderful experiences.
And people in the community know Andrew.”
One of their family
stories revolves around the first time Andrew went to overnight church camp,
along with classmates from parochial school. Some of the other kids at camp
made mean comments about Andrew, but his classmates spoke up and put a stop
to it.
“I love to watch
those kids, even today,” Enno says. “Just because they knew Andrew, they learned
to be comfortable around people with disabilities. He taught them an important
lesson.”
Today, Andrew has
had many experiences away from home: church youth trips to other states, 4-H
Congress for a week in Madison, and trips with his parents to Europe. Bea and
Enno say it can be scary to let Andrew try new things, but the risks have always
paid off.
Last year, Andrew
enrolled in his local high school to take some of the necessary child care courses
he will need for child care assistant certification. While their local technical
college refused to allow him to take the courses through their program, Andrew’s
parents say the local high school was very welcoming. He was on the Honor Roll
after his first semester. This year, he is taking world history, English, computers,
and child development with the help of a note taker. He should have his certification
at the end of this school year.
“Classes in child
care are hard, but I’ll succeed.” – Andrew
One of the biggest
concerns for Andrew’s parents was the high school bus, but Bea said it turned
out fine. On the very first morning, another student sat with Andrew, introduced
herself, and started chatting. They have remained friends since.
In fact, Andrew’s
school relationships proved to be critical to his well-being a few months later.
Last spring, Andrew was staying home alone and caring for an elderly aunt while
his parents spent a long weekend out of town. On the school bus, he found he
couldn’t breathe and was having severe chest pains. Some of his friends on the
bus alerted the driver, who called an ambulance.
It turned out Andrew
was suffering from pericarditis, a painful viral infection that mimics a heart
attack. Without the assistance of his school friends who knew him well, he might
not have gotten the medical attention he needed.
“I just keep thinking
what if they hadn’t taken him seriously and had just dropped him off at home?”
Bea says. “Thank goodness he had friends looking out for him.”
With the support
of his family and friends, Andrew continues to set new goals all the time. Right
now, he is focusing on getting a driver’s license. Like everything he has accomplished,
his family helps him move forward a step at a time. He started by learning to
use a riding lawn mower. Then, his father let him practice driving in their
long, winding driveway. He is getting the driving manual to study for the written
test.
“My goal is to take
care of myself,” Andrew says. “My job at Old World is important to helping me
reach my goals. My friends have been important, and so has hard work. Classes
in child care are hard, but “I’ll succeed.”
“I’ve grown up
with medical issues, and my mom says I’m good at talking to people, so a career
as a doctor makes sense.” - Stephanie
At age 16, Stephanie
already has a huge rubber tub full of awards and news clippings at her home.
She also has an equally impressive resume of activities that include typical
high school endeavors: National Honor Society, forensics, mock trials, student
athletic trainer, part-time jobs.
But Stephanie’s resume
also includes some exceptional experiences: published poet, keynote speaker
at statewide Developmental Disabilities conferences, and Rotary Club Ellsworth
Peterson Award.
Stephanie is a gifted
writer, public speaker, and self advocate. She also has experienced multiple
surgeries and hospitalizations because of polyostotic fibrous dysplasia, a metabolic
disorder that requires medication to relieve joint discomfort. She has used
a power wheelchair since she was three.
As a high school
junior, Stephanie knows she wants to attend St. Norbert College, a small, private
school not far from her northeastern Wisconsin home. She will pursue pre-med
with a major in either psychology or biology, and plans to apply to medical
school in either Madison or Milwaukee with the ambition of becoming either a
cardiologist, oncologist, or psychologist.
“I love to watch
Discovery Health on TV,” she says. “We have a family history that includes cancer
and heart conditions. I’ve grown up with medical issues, and my mom says I’m
good at talking to people, so a career as a doctor makes sense.”
“When you give
people the information on the company that can do the modifications, they’re
more likely to do it.” – Stephanie
Stephanie already
has three parttime jobs: she is an attendant at the water slide at her local
YMCA; she works in her aunt’s coffee house; and she sells her beaded jewelry
with a friend every Saturday at the local farmers’ market.
One reason the
two girls can go downtown “Michael needs a job that keeps his mind busy and
that’s hands-on. He likes to have something in his hands all the time, and he
needs to switch from station to station.” – Michael’s long-time friend, Amy
together is that Stephanie advocated for more accessible parking and curb cuts….
Stephanie lives with
her parents and 10-year-old sister, Meredith, with whom she is very close. Stephanie
and Meredith go downtown together to shop and hang out, like to swim, and play
Nintendo and board games together. Sometimes, Meredith admits, she sleeps in
Stephanie’s bedroom so they can talk.
One reason the two
girls can go downtown together is that Stephanie advocated for more accessible
parking and curb cuts in her small, tourismdriven community. As the only kid
with a physical disability at her high school, she also has made suggestions
for modifications in bathrooms and other parts of the school.
“When you give people
the information on the company that can do the modifications, they’re more likely
to do it,” is one strategy Stephanie says she has learned in becoming an effective
advocate.
As Stephanie transitions
out of high school and makes plans for her future, both she and her family see
physical accessibility and personal care as the biggest roadblocks to meeting
her goals.
For instance, Stephanie
faces costs of $30,000 or more to make modifications to a vehicle in order for
her to drive. The vehicle itself could cost another $40,000 to $45,000.
“I’m not crazy about
driving right now because it’s such a big commitment and because of the cost,”
Stephanie says. In the meantime, the compromise their family has developed is
that one of Stephanie’s friends is allowed to use the family van when they want
to go out together.
Another big issue
is personal care, especially since Stephanie wants to stay in the dorms if she
goes to St. Norbert’s. She and her mother, Kathy, differ on the level of support
Stephanie needs. Her mother wants her to have an aide at high school to attend
to Stephanie’s personal care needs, while the school has pulled that resource
for this year and has developed a plan where Stephanie could ask another assistant
for help if she needs it. Stephanie thinks that will work fine; her mother remains
unconvinced.
Likewise, in college,
Kathy is concerned about how Stephanie will get across campus during rainy,
icy weather that would make her power chair unsafe. She worries about what would
happen if Stephanie was driving and the van broke down. She wonders if Stephanie’s
future personal care attendants in college will be capable, committed people.
Stephanie, on the
other hand, hopes that she can end up asking friends in her dorm to help her
with the occasional personal care needs she has.
“I have a different
definition of independence than most people. I would hate to know something
could happen to my daughter and it could have been prevented but wasn’t because
others wanted her to be independent,” Kathy says.
“If I know she can
do it alone but it saves time when someone else helps her, save the time. On
the other hand, I’m realizing I need to transition myself during Stephanie’s
transition to help her deal with these issues of getting things done and getting
answers to questions. That’s part of the process for both of us.”
Kathy says one recent
example of encouraging Stephanie’s independence is when a tack became lodged
in her wheelchair. Stephanie was willing to let it stay, but her mother encouraged
her to call the pharmacy that repairs her chair to arrange for the tire to be
fixed.
“She wants me to
be more independent and realizes she will not always be there to make all the
phone calls,” Stephanie says. But Kathy also wants Stephanie to have all the
tools she will need to make good, independent choices.
One step that Stephanie
took this summer toward increased independence and a smooth transition was to
attend University of Wisconsin–Whitewater’s Youth Leadership Forum (YLF). The
oneweek camp for high school juniors and seniors with disabilities provides
information they need to know about leaving high school, as well as an independent
experience in the dorms. Many of the youth used personal care attendants whom
they did not know for the first time. Stephanie brought along a friend who helped
her.
I’m realizing
I need to transition myself during Stephanie’s transition to help her deal with
their issues of getting things done and getting answers to questions – Stephanie’s
mom, Kathy
Kathy says Stephanie
wasn’t sure about a camp geared toward youth with disabilities. But Stephanie
says she learned a lot about the role of the Division of Vocational Rehabilitation
(DVR) and is now asking them to come to her Individual Education Plan meetings
this year. She also made connections to older youth with disabilities who have
begun college, which she said was helpful.
“I liked traveling
to Whitewater to participate in the YLF,” Stephanie says. “I was nervous about
getting a taste of college life away from home, being that it was my first time
far from home without an adult. But everything worked out great. My friend that
came along acted as my `assistant’ to help me in the shower and in the cafeteria.
I felt mostly independent and I had a great time. It was difficult to leave
all the new friends I had made.”
Stephanie still corresponds
with her friends from across the state who attended YLF. They talk on the phone
and e-mail each other. The experience was a confidence-booster, and reinforced
Stephanie’s belief that relying on friends for some personal care needs can
work.
Stephanie says the
most important reason she feels so confident about the future, and so willing
to try new things, is because of the support her family has given her. She feels
they will continue to play a big role in her continuing independence as she
moves toward college and a career.
“My parents have
always encouraged me to do the best. My dad always wants me to avoid settling
for the least, to go for the best and put forth all my effort,” Stephanie says.
“My mother is my idol, the epitome of my life. My sister is my best friend.
She is my confidant and someone who I can be myself with. If I didn’t have my
parents and sister, I wouldn’t be what I am today.”
“If I didn’t have
my parents and sister, I wouldn’t be what I am today.” – Stephanie
Preface
Andrew - August 2003
Stephanie - August 2003