Waisman CenterUniversity of Wisconsin–Madison

Wisconsin Healthy & Ready to WorkA Series of Materials Supporting Youth

with Special Health Care Needs

Stories ofStories ofStories ofStories ofStories of TTTTTrrrrransitionsansitionsansitionsansitionsansitionsto the Adult World

Developed by Beth Swedeen

Wisconsin Healthy & Ready to Work is a project of the University Center for Excellencein Developmental Disability at the Waisman Center. Wisconsin HRTW is funded by theDivision of Services for Children with Special Health Needs (DSCSHN) in the FederalMaternal and Child Health Bureau (MCHB), Health Resource and Services Administration(HRSA), U.S. Department of Health and Human Services (DHHS) Updated 4/03

Wisconsin Healthy & Ready to Work:A Series of Materials Supporting Youth with

Special Health Care Needs

Stories ofStories ofStories ofStories ofStories of TTTTTrrrrransitionsansitionsansitionsansitionsansitionsto the Adult World

Developed by Beth Swedeen

A Waisman Center Publication, June 2004

Preface .............................................................................. 4

Andrew, August 2003 ...................................................... 5-8

Stephanie, August 2003 ................................................ 9-12

Michael, February 2004 .............................................. 13-16

Andy , November 2003................................................ 17-19

Acknowledgements

The author would like to acknowledge the four young adults featured in ourWisconsin stories: Andrew, Stephanie, Michael, and Andy. They weregenerous in offering their time, insights, and feedback. Their belief inthemselves is inspirational, and their honesty is always refreshing.

Also, thanks to their families for providing important background informationand 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.

Table of Contents

“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 abouthis future career for a long time.Inspired by his 19 nieces andnephews, he knows he wants to workin a daycare as a child care assistant.

Andrew, who is 20 and lives insoutheastern Wisconsin, has plenty ofexperience.

He routinely takes care of seven niecesand nephews at one time. He hasvolunteered in his county’s Birth-to-3program, and volunteersin a local daycare centerduring the school yearas part of his schoolprogram. He also is ajunior leader with his 4-HClub, and helps thebeginning members withtheir foods projects.

Andrew, who has Downsyndrome, startedvolunteering during hismiddle school years,when he helped firstgraders with their

reading. He went on to help teachswimming at the local pool and tobe a volunteer with the localrecreation department’s programfor younger children. He also hashelped coach basketball.

And one of his volunteer jobs hasled to a paid job. Andrew startedvolunteering as an interpreterseveral years ago at Old WorldWisconsin, where he shares

information aboutthe old breed farmanimals and antiquetoys with visitors.But his outgoingpersonality andstrong work ethiceventually landedhim a job in themuseum’srestaurant, wherehe busses andcleans up.

Andrew - August 2003PrefaceThe road to adulthood is rarely smooth, even for young people who have hadthe best possible preparation. When a young person has a significantdisability, that journey can be even more challenging. Work experiences canbe harder to come by and require more support. A young person may have tolearn how to manage medications and talk to doctors along with learning howto cook and balance a checkbook. Inadequate transportation and long countywaiting lists further complicate the ability to live and work in the community.

In the following pages, you will meet four young people with very differentstrengths, gifts, interests and concerns. However, they all share the desire tolive 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 inhelping shape their dreams into reality.

Their stories are not meant to be a set of driving directions toward the idealtransition. But hopefully, these young people’s stories can get readers thinkingabout a variety of possibilities they may not have explored before.

4 5

One of his bosses,Gary, says Andrew isa great employee in aposition where it ishard to retain goodworkers. He chatswith customers, canmeet work deadlines,and is dependable.

“We made a few accommodations forAndrew at first, and it seems to workvery well,” Gary says. “He does bestwhen we show him exactly how to do ajob, so we demonstrated some of thecleaning jobs for him. We also let himstart an hour earlier, because he worksa little slower than other people we havehad in this job. But he’s a greatemployee and a real asset in theworkplace.”

Andrew’s job atOld WorldWisconsin hasled to otherdreams for hisfuture, includingworking as a waiter in a nice restaurant.He also plans to have a girlfriend, ownhis own house, and eventually getmarried. “In ten years, I’ll be marriedand driving a Mercedes-Benzconvertible,” he says.

Like his job at Old World Wisconsin,Andrew’s child care ambitions startedas a volunteer experience with niecesand nephews: his sister-in-law neededan occasional babysitter. And as withhis cleaning job, Andrew’s sister-in-law

“From the time Andrewwas very, very young,we’ve insisted on fullinclusion,” says Bea.“He attended a Lutheranday school through sixthgrade, and then wedecided to home schoolso Andrew could spendmore time out in the community. Witha flexible schedule, he could doacademics in the morning andcommunity activities in the afternoon.That’s why he’s had so much time tovolunteer and gain all these wonderfulexperiences. And people in thecommunity know Andrew.”

One of their family stories revolvesaround the first time Andrew went toovernight church camp, along withclassmates from parochial school.Some of the other kids at camp mademean comments about Andrew, buthis classmates spoke up and put astop to it.

“I love to watchthose kids, eventoday,” Enno says.“Just becausethey knew Andrew,they learned to be comfortable aroundpeople with disabilities. He taughtthem an important lesson.”

Today, Andrew has had manyexperiences away from home: churchyouth trips to other states, 4-HCongress for a week in Madison, and

found that a fewsimpleaccommodationsworked well. Shetypes outdirections forAndrew becausehe works best withclear expectationsand he can’t

always read her handwriting.

His father, Enno, says their familybegan talking careers early withAndrew. In the past, he’s wanted tobe a football player, a doctor, and afireman. But Andrew settled on childcare after considering manyvariables.

“Aside from the fact he does anexcellent job, there’s a need all over

the country,”Enno says.“Child carepositions areavailable inevery

community, and Andrew could stillfind a job while living close bywhenever he is ready to move out.”

Enno and his wife, Bea, havefocused on community opportunitiesand experiences for Andrew since hewas little. The youngest of sixchildren, Andrew got some of hisearliest job experiences – includingmilking cows – through visiting hisgrown siblings at their own homes.

“He’s a great employee and a real asset inthe workplace.” – Gary (Andrew’s boss atOld World Wisconsin)

trips with hisparents toEurope. Bea andEnno say it canbe scary to letAndrew trynew things, butthe risks havealways paid off.

Last year, Andrew enrolled in hislocal high school to take some ofthe necessary child care courseshe will need for child careassistant certification. While theirlocal technical college refused toallow him to take the coursesthrough their program, Andrew’sparents say the local high schoolwas very welcoming. He was onthe Honor Roll after his firstsemester. This year, he is takingworld history, English, computers,and child development with thehelp of a note taker. He shouldhave his certification at the end ofthis school year.

One of thebiggestconcerns forAndrew’s

parents was the high school bus,but Bea said it turned out fine. Onthe very first morning, anotherstudent sat with Andrew,introduced herself, and startedchatting. They have remainedfriends since.

6 7

“Classes in child care are hard, but I’llsucceed.” – Andrew

In fact, Andrew’sschool relationshipsproved to be critical tohis well-being a fewmonths later. Lastspring, Andrew wasstaying home aloneand caring for anelderly aunt while his parents spenta long weekend out of town. On theschool bus, he found he couldn’tbreathe and was having severechest pains. Some of his friends onthe bus alerted the driver, who calledan ambulance.

It turned out Andrew was sufferingfrom pericarditis, a painful viralinfection that mimics a heart attack.Without the assistance of hisschool friends who knew him well,he might not have gotten themedical attention he needed.

“I just keep thinking what if theyhadn’t taken him seriously and hadjust dropped him off at home?” Beasays. “Thank goodness he hadfriends looking out for him.”

At age 16, Stephanie already has ahuge rubber tub full of awards andnews clippings at her home. She alsohas an equally impressive resume ofactivities that include typical highschool endeavors: National HonorSociety, forensics, mock trials,student athletic trainer, part-time jobs.

But Stephanie’s resume also includessome exceptional experiences:published poet, keynote speaker atstatewide Developmental Disabilitiesconferences, and Rotary ClubEllsworth Peterson Award.

Stephanie is a gifted writer, publicspeaker, andself advocate.She also hasexperiencedmultiplesurgeries andhospitalizations because ofpolyostotic fibrous dysplasia, ametabolic disorder that requiresmedication to relieve joint discomfort.She has used a power wheelchairsince she was three.

As a high school junior, Stephanie knowsshe wants to attend St. Norbert College,a small, private school not far from hernortheastern Wisconsin home. She willpursue pre-med with a major in eitherpsychology or biology, and plans toapply to medical school in eitherMadison or Milwaukee with the ambitionof becoming either a cardiologist,oncologist, or sychologist.

“I love to watch Discovery Health on TV,”she says. “We have a family history thatincludes cancer and heart conditions.I’ve grown up with medical issues, andmy mom says I’m good at talking topeople, so a career as a doctor makes

sense.”

Stephaniealready hasthree part-timejobs: she is an

attendant at the water slide at her localYMCA; she works in her aunt’s coffeehouse; and she sells her beaded jewelrywith a friend every Saturday at the localfarmers’ market.

With the support of hisfamily and friends,Andrew continues toset new goals all thetime. Right now, he isfocusing on getting adriver’s license. Likeeverything he has

accomplished, his family helps himmove forward a step at a time. Hestarted by learning to use a riding lawnmower. Then, his father let himpractice driving in their long, windingdriveway. He is getting the drivingmanual to study for the written test.

“My goal is to take care of myself,”Andrew says. “My job at Old World isimportant to helping me reach mygoals. My friends have been important,and so has hard work. Classes in childcare are hard, but “I’ll succeed.”

Stephanie - August 2003

8 9

“When you give people the information onthe company that can do the modifications,

they’re more likely to do it.” – Stephanie

“I’ve grown up with medical issues, and my mom saysI’m good at talking to people, so a career as a doctor

makes sense.” - Stephanie

Stephanie lives withher parents and10-year-old sister,Meredith, with whomshe is very close.Stephanie andMeredith godowntown together toshop and hang out,like to swim, andplay Nintendo and board gamestogether. Sometimes, Meredithadmits, she sleeps in Stephanie’sbedroom so they can talk.

One reason the two girls can godowntown together is thatStephanie advocated for moreaccessible parking and curb cuts inher small, tourism-drivencommunity. As the only kid with aphysical disability at her highschool, she also has madesuggestionsformodificationsinbathroomsand otherparts of the school.

“When you give people theinformation on the company thatcan do the modifications, they’remore likely to do it,” is one strategyStephanie says she has learned inbecoming an effective advocate.

As Stephanie transitions out of highschool and makes plans for herfuture, both she and her family seephysical accessibility and personal

care as thebiggestroadblocks tomeeting hergoals.

For instance,Stephanie facescosts of $30,000or more to make

modifications to a vehicle in order for herto drive. The vehicle itself could costanother $40,000 to $45,000.

“I’m not crazy about driving right nowbecause it’s such a big commitmentand because of the cost,” Stephaniesays. In the meantime, the compromisetheir family has developed is that one ofStephanie’s friends is allowed to use thefamily van when they want to go outtogether.

Another bigissue ispersonalcare,especiallysince

Stephanie wants to stay in the dorms ifshe goes to St. Norbert’s. She and hermother, Kathy, differ on the level ofsupport Stephanie needs. Her motherwants her to have an aide at high schoolto attend to Stephanie’s personal careneeds, while the school has pulled thatresource for this year and hasdeveloped a plan where Stephanie couldask another assistant for help if sheneeds it. Stephanie thinks that will workfine; her mother remains unconvinced.

Likewise, in college, Kathy isconcerned about how Stephanie willget across campus during rainy, icyweather that would make her powerchair unsafe. She worries aboutwhat would happen if Stephaniewas driving and the van brokedown. She wonders if Stephanie’sfuture personal care attendants incollege will be capable, committedpeople.

Stephanie, on the other hand,hopes that she can end up askingfriends in her dorm to help her withthe occasional personal care needsshe has.

“I have a different definition ofindependence than most people. Iwould hate to know somethingcould happen to my daughter and itcould have been prevented butwasn’t because others wanted herto beindependent,”Kathy says.

“If I knowshe can doit alone butit savestime when someone else helps her,save the time. On the other hand,I’m realizing I need to transitionmyself during Stephanie’s transitionto help her deal with these issuesof getting things done and gettinganswers to questions. That’s part ofthe process for both of us.”

Kathy says one recent example ofencouraging Stephanie’sindependence is when a tackbecame lodged in her wheelchair.Stephanie was willing to let it stay,but her mother encouraged her to callthe pharmacy that repairs her chairto arrange for the tire to be fixed.

“She wants me to be moreindependent and realizes she will notalways be there to make all thephone calls,” Stephanie says. ButKathy also wants Stephanie to haveall the tools she will need to makegood, independent choices.

One step that Stephanie took thissummer toward increasedindependence and a smoothtransition was to attend University ofWisconsin–Whitewater’s YouthLeadership Forum (YLF). The one-week camp for high school juniors

andseniorswithdisabilitiesprovidesinformationthey needto know

about leaving high school, as well asan independent experience in thedorms. Many of the youth usedpersonal care attendants whom theydid not know for the first time.Stephanie brought along a friend whohelped her.

One reason the two girls can go downtowntogether is that Stephanie advocated for more

accessible parking and curb cuts….

10 11

I’m realizing I need to transition myself duringStephanie’s transition to help her deal with their

issues of getting things done and getting answersto questions – Stephanie’s mom, Kathy

Kathy says Stephanie wasn’t sureabout a camp geared toward youthwith disabilities. But Stephaniesays she learned a lot about therole of the Division of VocationalRehabilitation (DVR) and is nowasking them to come to herIndividual Education Plan meetingsthis year. She also madeconnections to older youth withdisabilities who have begun college,which she said was helpful.

“I liked traveling to Whitewater toparticipate in the YLF,” Stephaniesays. “I wasnervous aboutgetting a tasteof college lifeaway fromhome, being that it was my firsttime far from home without an adult.But everything worked out great. Myfriend that came along acted as my`assistant’ to help me in the showerand in the cafeteria. I felt mostlyindependent and I had a great time.It was difficult to leave all the newfriends I had made.”

Stephanie still corresponds with herfriends from across the state whoattended YLF. They talk on thephone and e-mail each other. Theexperience was a confidence-booster, and reinforced Stephanie’sbelief that relying on friends forsome personal care needs canwork.

Stephanie says the most importantreason she feels so confident about thefuture, and so willing to try new things,is because of the support her familyhas given her. She feels they willcontinue to play a big role in hercontinuing independence as she movestoward college and a career.

“My parents have always encouragedme to do the best. My dad alwayswants me to avoid settling for the least,to go for the best and put forth all myeffort,” Stephanie says. “My mother is

my idol,theepitome ofmy life.My sisteris my best

friend. She is my confidant andsomeone who I can be myself with. If Ididn’t have my parents and sister, Iwouldn’t be what I am today.”

12 13

Michael – February 2004

So says the one-page handoutcreated by 19-year-old Michael andhis family. They have such a strongvision for Michael’s future that theyfelt the need to spell it out.

“Michael should be able to live withsupport in his own home. He shouldbe able to contribute by workingand volunteering in his community,and he would like to participate inrecreational activities with peoplehis own age. We believe that if weall work together, our dream CANcome true!”

This dream, not unlike the dreamsof many families for their teens, hasnot been the typical experience foryoung people with significantdisabilities in Michael’s smallnorthern Wisconsin town. Typically,children with disabilities have beenplaced in segregated classroomsand have graduated to shelteredworkshops and group homes.

“We worked so hard to have Michaelincluded in first grade, and now we’restarting all over from scratch with histransition,” says Michael’s mother,Rose. “But Michael is not going to agroup home or a sheltered workshop.That’s not what’s best for him.”

Michael recently graduated from highschool and enjoys shopping andhanging out with friends, jumping on thetrampoline, and horsing around with hisdad, Dave, and younger brother, Travis.He likes to be on the go, has a goodsense of humor and enjoys interactingwith others. His family can’t imaginehim living and working in a situationwhere he wouldn’t have a lot of controlover how he spends his time and whohe spends it with.

Michael has cerebral palsy, whichaffects his movement, speech andvision. He uses a wheelchair,communicates by answering yes or noto questions, and needs help withdressing, eating, using the bathroomand navigating around his home andcommunity.

“If I didn’t have my parents and sister, Iwouldn’t be what I am today.” – Stephanie

“Our dream is that Michael will live, not independently, butINTERDEPENDENTLY... - Michael’s family

14 15

Throughout school,Michael was involved inCub Scouts, church youthgroups and socialactivities through a “Circleof Friends” programthat began inmiddle school.

Even with these experiences,Michael and his family did notrealize the many challenges thattransitioning from school to adultlife would pose.

In Michael’s county, if a youngperson lives in a group home andworks at theshelteredworkshop, thenmost supportsare already inplace:transportation,a place to live,a place towork, job supports and personalcare.

Consistent with his schoolexperience, however, Michael andhis family want a moreindividualized and less segregatedexperience based on Michael’sstrengths and choices. To makethat happen, Rose and Daverealized they would have to startvirtually from scratch.

As Michael entered high school,they began talking seriously withschool staff about preparing himfor transition.

“Starting in ninthgrade, we said wewanted Michael out inthe community, doingvolunteer or even paidwork. But the schoolseemed very slowabout developing job

opportunities,” Rose said. “We triedseveral things, but we always seemedto end up back at square one.”

During Michael’s senior year, he didwork at four different volunteer sites inthe community: the public library, akindergarten classroom, a hunting club

and anassistedliving home.Unfortunately,the jobsiteslackedspecific jobdescriptionsand

expectations. Michael’s friend Amy,who has known him well since seventhgrade, says the jobs weren’t well-suitedto Michael’s talents and strengths.

“In a library, you have to be quiet all thetime, and it’s not very interesting,” shesays. “Michael needs a job that keepshis mind busy and that’s hands-on. Helikes to have something in his hands allthe time, and he needs to switch fromstation to station. He would really enjoysomething that he can say he made.And throughout everything, I thinkMichael has to have friends around him.That’s all he ever wanted.”

Michael’s school districtis obligated to providespecialized programminguntil Michael is 21,based on federal law. So,Michael can receivevocational training, jobplacement andtransportation servicesfrom the school district for twomore years.

Complicating the search for jobopportunities has been Michael’srecent health problems, which haveresulted in frequent pain and majorsurgery. Recently, he spent weeks incasts that totally immobilized him.Frequent pain has often interferedwith his ability to concentrate.

Because finding the right job or jobsis so importantto their familyand sochallenging ina rural area,Rose workedwith theschool district to contract with theregional Cerebral Palsy Center toconduct a vocational evaluation thatcould help lead to more meaningfuljob experiences.

Some ideas that emerged includeworking in a grocery story or deliverywork at a local auto parts store sothat Michael can keep on the go.Both job options would keep himengaged with people throughout theday. A delivery job also might allow

some schedulingflexibility for dayswhen Michael needsto attend to his healthconcerns.

To follow up on thisidea, Rose found awoman in the

community who had done jobdevelopment before, and was willing totalk to local businesses about hiringMichael. She quickly lined up a job at alocal grocery store, and the managerwas enthused about Michael workingthere. A young woman who had donepersonal care for Michael in the pastagreed to work as his job coach.Everything seemed set. However, theplan fell through when the owner, wholives in a different community, wasconcerned about liability issues.

Michael’ssurgery andcontinuinghealthconcernshave put job

hunting on the back burner for now.

Another difficult dream to achieve forMichael has been finding the resourcesso he can move into his own place.Michael and his family want him tostay in his hometown, because he hasa large extended family close by andmany people in town already know him.

The county has estimated it would cost nearly$4,000 per month to support Michael to live in

the community by himself, soRose is hoping they can find Michael

a roommate.

“Michael needs a job that keeps his mind busyand that’s hands-on. He likes to have somethingin his hands all the time, and he needs to switch

from station to station.” – Michael’s long-timefriend, Amy

16 17

“It’s important to look ahead to what you want to do andknow where you want to go.…

Right now, I like where I am.” - Andy

At age 23, Andy knows exactly whathe likes and what his limits are. Heloves animals, gardening, andworking with older adults. He has ahard time with loud environments,what he calls “the youngergeneration,” and working so manyhours that he ends up being stressedand anxious.

Andy lives in his own apartment in asmall town not farfrom Eau Claireand has autism.

He feelscomfortable driving, as long as it’swithin a 10-mile radius ofhis home.

He works part-time on the wait staffin a nursing home, often spends timeat the library reading and checkingout books, and takes meticulouscare of his two dogs, a Chihuahuanamed Zippy and a Pomeraniannamed Fluffy.

He recently joined a church, goes to theYMCA to play basketball, and hastaken one of his dogs through trainingto be certified as a therapy dog innursing homes. He volunteers regularlywith his dog, and often runs errands forhis friends at the nursing home. He alsohas competed at the state SpecialOlympics competitions in basketballand track and field.

Andy is prettysatisfied with thechoices he hasmade as hetransitioned out of

high school and into a job andcommunity life. But it took severalyears, lots of questions on Andy’s part,and the support of his mother andseveral other people in the communityto get him where he is today.

In middle school, Andy had a roughtime. He had not been diagnosed withautism yet, and both the school and hiscommunity assumed Andy’s struggleswere related to emotional problems.Andy grew up on a farm with fourbrothers.

Andy - November 2003While a countyadministrator hasbeen supportive ofMichael finding hisown place, he haspointed out that it isdifficult to free upmoney to pay forMichael’s personalcare in his ownhome when a fully-staffed grouphome in the county has open beds.

The county has estimated it wouldcost nearly $4,000 per month tosupport Michael to live in thecommunity by himself, so Rose ishoping they can find Michael aroommate – possibly a high schoolfriend who could also provide somepersonal care and hang out withMike.

While the family continuesdiscussions about attendant care,they also are house hunting for ahome that would meet Michael’saccessibility needs and would belocated within walking distance of thedowntown area. Rose hasinvestigated programs that assistpeople with disabilities in purchasingtheir own homes, including the Movin’Out program headquartered inMadison. She also has talked to theIndependent Living Center andCommunity Action Project Services,which might assist with accessibilityand rehab needs.

“We have had help from a variety ofpeople who want Michael to

succeed. Unfortunately,when you are workingwith multiple people andagencies, each questionoften produces two morequestions instead of aneasy answer, andeverything takes moretime than you would like,”Rose says.

Rose says one of the most helpfuladvocates they have had has been PatKelly, from the Wisconsin Coalition forAdvocacy. Rose met Pat at a FamilySupport conference when Michael wasa preschooler. Pat’s presentation aboutCircle of Friends and inclusiveschooling helped Rose realize whatMichael’s life could look like.

Pat believes that the family’spersistence in trying to create a betterservice system for Michael has been atthe heart of Michael’s success so far.

“It really is people like Rose whoenlighten people with their vision andenergy,” Pat says. “Their family hasnever wavered from their belief aboutwhat Michael’s life can be like. Andhe’s had one of the best schoolexperiences a kid like Michael couldhave because of their vision. Thereason they are so passionate isbecause they are so solid in their beliefin their son. They know what his futurecan look like.”

In middle school, Andyhad a rough time.

18 19

He was on the wrongmedications, and hadfew breaks from thenoise and distraction ofhis large family athome and the fast paceat school.

But when Andy was15 ½, his motherpurchased a house in town. Andy’solder married brother moved indownstairs, and Andy rented asmaller apartment on the secondfloor. It was quiet and private. Andycould decorate it the way hewanted. His brother was rightdownstairs if he needed help.

Around the same time, Andyreceived a more accurate diagnosisand a bettereducationalprogram tofit his needsat school.Andy’s teacher coached him onpractical skills, like moneymanagement and social issues.

Andy also made someconnections with two other adultswho continue to provide supportfrom time to time: his county caseworker, Pat, and the director ofWisconsin’s Western RegionChildren with Special Health CareNeed Program, Wynne.

“I realized that if I was going to helpAndy, I would have to build arelationship with him,” Wynne says.

“It took a couple ofyears of listening toAndy one problem at atime and coaching himaround finding the rightanswers. It wasextremely important toacknowledge hisabilities and listen tohis ideas. In the end,

care coordination among several of usmeant a lot to this family.”

Andy also acknowledges that thissmall group of engaged, interestedadults played a big role in hissuccessful transition.

“Socially, it was hard for me to be ina large high school,” Andy says. “Myteacher helped me with that. Then I

had Wynne,Pat, and mymom. If Ineeded totalk to

someone or if I had a financialquestion, I could go to them.”

Pat acted as a liaison with Andy’spsychiatrist, putting him on the road tomore accurate treatment andmedication. At high school, Andy tooka foods class to learn how to cookand driver’s education so he couldprepare for getting himself around townindependently. The school providedspace so Andycould recover when the noise and fastpace were too much to handle. Andyseemed to be finding hisniche, and graduated with hisclassmates in 1998.

After graduation, Andybegan working at asheltered employmentsite in a neighboringtown. The hours werelong. He had to take abus at six a.m. thatdropped him off wellbefore his shift beganat eight. He continued to feeluncomfortable around the people heworked with.

In some ways, Andy’s transitioncould have been consideredcomplete. He was livingindependently, was caring forhimself, and had a job. But in otherways, he was still struggling.Fortunately,the adults inhis life whowere hissupportsrecognized he was unhappy, andurged him to consider all hisoptions.

“Andy was being pushed to work 40hours a week. But he does somuch better when he is not workingfull time,” Wynne says. “For him,full-time work caused incredibleanxiety and stress.”

Andy began scanning the want adsin the newspaper. When an adappeared for food service at thelocal nursing home, he took theinitiative and applied. Wynne andPat helped him work out a budgetso that he could pay all his bills,work part-time, and still receivesome support from Social Security.

Now, Andy worksone to three days aweek, and no morethan four hours at atime. The pace isslower, and he hasplenty of time tohimself. He enjoyschatting with the

nursing home residents. “They knowhow to have a conversation,”he says.

He no longer has that constant feelingof anxiety that he experienced in highschool and on his first job. And heknows if he has a quick question (likehow to sort colors for laundry), or amore detailed question (like how to fill

outgovernmentforms), hecan drop byfor a quick

visit with Wynne or Pat.

Andy realizes that he had to learn a lotof new skills, had to be willing to askquestions, and had to take some risksin order to make his transitionsuccessful.

“It’s important to look ahead to whatyou want to do and know where youwant to go,” he says. “But you alsohave to put in a lot of effort. I think Imay try a different job as I get older, butit’s too early to tell now. Right now, Ilike where I am.”

In some ways, Andy’s transition could havebeen considered complete...But in other

ways, he was still struggling.

He no longer has that constant feeling ofanxiety that he experienced in high school

and on his first job.

20 21

About the AuthorBeth Swedeen works as a community outreach specialist with theHealthy and Ready to Work transition project at University of Wisconsin–Madison’s Waisman Center. She has had the privilege ofworking with youth who have disabilities, their families, and transitionproviders around the state in an effort to build community supports andimprove transition services for youth with disabilities.

She has two daughters, ages 13 and 11. Her 11 year old, who has adisability, is already active in planning her own long-range transitionfrom school to a job working with animals, and from her home to herown apartment.