a news magazine of pacer center, inc. by and for parents ...2 pacesetter –s ummer 2006 call (952)...

1Visit www.pacer.org PACESETTER – SUMMER 2006

Summer 2006 • Vol. 29, Issue 2PACESETTER

What it’s all about!

Jarek Belle-Isle presents Benefit performerMichael Bolton with PACER notecards featuringJarek’s design. Artist Anthony Whelihan looks on.See more on page 15.

By Patricia BillApproximately 6.9 million American

children with disabilities, from birththrough age 21, received specialeducation services through the Indi-viduals with Disabilities Education Act(IDEA) in 2002.

The figure comes from datacollected for the 26th Annual Reportto Congress on the Implementationof the Individuals with DisabilitiesEducation Act, 2004. The two-volume several-hundred-paged reporton IDEA, released in April 2006, wasprepared for the Office of SpecialEducation and Rehabilitative Services(OSERS), U.S. Department ofEducation.

It covers IDEA-related informationfrom the health of infants and toddlersserved by IDEA to preparing young

adults for the transition to life beyondhigh school.

The report includes information byage groups: infants and toddlers (PartC of IDEA); children ages 3–5 (PartB), and students ages 6–21 (Part B).Among the data:■ The 268,331 children ages birth–2

years receiving services underIDEA’s Part C represents about 2.2percent of the birth–2 population inthe United States. The number ofchildren served under Part Cincreased by 62.3 percent between1994 and 2002.

■ In 2002, Part B served 647,420children ages 3–5.

■ In the 6–21 aged students receivingPart B services, the greatestnumber were diagnosed with a

specific learning disability (48.3percent). Other disability categorieswere speech or language impairments(18.7 percent), mental retardation (9.9percent), serious emotional disturbance(8.1 percent), other health impairments(6.6 percent), and other disabilities (8.4percent).To order a copy of the report, go to

www.edpubs.org/webstore/Content/search.asp and type in the report title orthe ID number (ED000675P).

Annual federal report looks at special education

Glamour, great entertainment, lively auctions—PACER’s annualBenefit is THE event for many generous Minnesotans. Thepurpose: to support PACER programs for children with all disabili-ties and their families. (See pages 11–14.)

An exchange between 11-year-old Jarek Belle-Isle and pop starMichael Bolton at the end of the evening was the essence of theBenefit and PACER’s work. Jarek won PACER’s Creative Kidsart competition. He showed off his ability by presenting PACERnotecards featuring his original design to a receptive Bolton.

Jarek’s experience symbolizes PACER’s mission: To expandopportunities and enhance the quality of life of children and youngadults with disabilities and their families.

PACER, the Benefit, children:

A news magazine of PACER Center, Inc. by and for parents of children and young adults with disabilities

Final regulations for Part B of theIndividuals with Disabilities Act (IDEA),as amended in 2004, are expected inAugust. IDEA is the federal law thatprovides a free, appropriate publiceducation for children with disabilities.

Regs expected soon

2 PACESETTER –SUMMER 2006 Call (952) 838-9000

PACESETTERPublished by PACER Center, Inc.

Three times a yearCirculation: 105,000

©2006 by PACER Center8161 Normandale Blvd.

Minneapolis, MN 55437-1044

Voice: (952) 838-9000TTY: (952) 838-0190

Toll-free: (800) 537-2237(MN)Toll-free: (888) 248-0822 (National)

FAX: (952) 838-0199E-mail: [email protected]

PACER Executive Director:Paula F. Goldberg

Communications Director, Editor: Pat BillWriter-Editor: Marcia Kelly

PACER Center expands opportunities and enhances thequality of life for children and young adults withdisabilities and their families. The mission is based onthe concepts of parents helping parents and working incoalition with others. An Equal Opportunity Employer,PACER is funded by grants from the U.S. Departments ofEducation, Labor, and other sources, and fromfoundations, corporations, and individuals. Viewsexpressed do not necessarily reflect those of theDepartments or other donors. Contributions to PACERare tax-deductible. For information, call Monday throughFriday, 8 a.m. to 5 p.m.

PACER Web site: www.pacer.orgAlliance site: www.taalliance.org

FAPE site: www.fape.orgC3 site: www.c3online.org

Bullying: www.pacerkidsagainstbullying.org(Alternate format is available upon request.)

Event examines learning, mental health disabilitiesMore than half the calls

PACER Center receives fromparents involve invisible disabili-ties— learning and mentalhealth issues such as attentiondisorders, learning disabilities,and emotional-behavioraldisorders.

The first annual Ted &Roberta Mann FoundationSymposium for Children’sMental Health and LearningDisabilities will address those concernson Aug. 8.

“Based on the overwhelmingnumber of reservations received andthe size of the waiting list to attendthe symposium, we are planning asimilar event next year,” said PaulaF. Goldberg, PACER executivedirector. “This year’s registrationfilled quickly. It shows the criticalneed for information.”

Sponsored by the Mann foundation,the free symposium is designed forgeneral education teachers (CEUs areoffered) and parents of children withdisabilities. PACER is a co-sponsor.

Keynote speakers are■ Jonathan Mooney, writer-activist who

has dyslexia, did not learn to read untilhe was 12 years old. A graduate ofBrown University, with an honorsdegree in English literature, Jonathanco-founded Project Eye-to-Eye, a

famous mentoring program for stu-dents with disabilities. He received aprestigious Truman Scholarship forgraduate studies and was a RhodesScholarship national finalist.

■ Gabrielle Carlson, M.D., specializesin childhood and adolescent depres-sion and bipolar disorder. She is aprofessor of psychiatry and pediatricsand directs the Division of Child andAdolescent Psychiatry at the StateUniversity of New York at StonyBrook. Carlson obtained her medicaldegree from Cornell University andtrained at Washington University (St.Louis) and the National Institutes ofMental Health. She completed afellowship and taught at UCLA.

■ John Schumacher, world-famouschef, had difficulty reading andlearning as a child. Later he wasdiagnosed with dyslexia. Althoughfrustrated in the classroom, he

succeeded as a cook andbaker. He earned a diplomafrom Dunwoody Institute andgraduated with high honorsfrom the Culinary Institute ofAmerica. Schumacherowned and operated theworld-class New PragueHotel and has publishedthree cookbooks.

The conference includesinteractive breakout sessions

led by education and mental healthexperts.

For information about results of theconference or to learn about registrationfor next year’s symposium, visitwww.pacer.org or call PACER at(952) 838-9000 (metro area) or(800) 537-2237 (Greater Minnesota)

The ongoing mission of the Ted and Roberta Mann Foundation is to keepalive the legacy established by the late Ted Mann, theater owner, movieproducer, businessperson, and philanthropist. Administered by Mann’s eldestdaughter, Roberta Mann Benson, and her two children, John and BlytheBrenden, the foundation continues to make a difference in the lives of many.

The content of the symposium is of particular interest to Roberta MannBenson from a professional standpoint. She received her master’s degree inpsychotherapy at the Adler Graduate School and is currently working on herdoctorate at St. Mary’s University in the field of education. Mann Benson isalso certified as a life coach.

The Ted and Roberta Mann Foundation

Ted & Roberta Mann Foundation Symposium:

Gabrielle Carlson John Schumacher Jonathan Mooney


BarbaraTroolin, Ph.D.,was made Direc-tor of SpecialEducation Policy,the MinnesotaDepartment ofEducation (MDE),in January.

She had beenDirector ofSpecial Servicesat South Washington County Schools.There she oversaw special education

A simple bequest can change livesIt’s easy to make a bequest—a gift that lives after you.

Simply remember PACER with a statement in your will or trust.

PACER Center, Inc. ■ 952.838.9000

Your bequest in your will provides a legacy ofyour concern for children with disabilities and theirfamilies. It will support important PACER programsthat truly make a difference in the lives of children.

Bequests can be in cash, real estate, securities, orother assets, and they may be deducted from your

estate taxes. PACER Center, Inc. is registered as a501(c)(3) nonprofit corporation in Minnesota.

For information on how you can make a bequest toPACER, contact Mary Schrock, PACER Center’sdirector of development, or an attorney who repre-sents your interests.

Alexa Posny, Ph.D., former deputycommissioner at the Kansas StateDepartment of Education, specialeducation director, and teacher ofstudents with emotional and learningdisabilities, was named Director of theOffice of Special Education Programs(OSEP). OSEP is part of the U.S.Department of Education under theOffice of Special Education andRehabilitative Services (OSERS). JohnH. Hager, Assistant Secretary ofEducation, OSERS, announcedPosny’s appointment in April.

Posny oversees a number of federalprograms affecting students withdisabilities and their families. Her work

has beenrecognizednationally forsome time.Kansas isviewed as aleader in theinclusion ofstudents withdisabilities inits statewideaccountabilitysystem, andPosny was invited numerous times toshare Kansas’ experience with alter-nate assessments with federal officials.

In addition to her Kansas post,

Posny was director of special educa-tion in Kansas, Wisconsin, and Illinoisschool districts. She has taught el-ementary school students with learningdisabilities and students with behaviordisorders in middle and high schools.

“We look forward to Alexa Posny’sleadership,” said Paula F Goldberg,PACER Center’s executive director.“Her priorities of parent involvement,early childhood issues, transition foryoung adults, and No Child LeftBehind and IDEA [the Individuals withDisabilities Education Act] will benefitchildren with disabilities and theirfamilies.”

Barbara Troolin directs Minnesota’s special education

Alexa Posny appointed to head OSEP

and several other programs.Before her South Washington

County responsibilities, Troolin wasmanager of the Monitoring and Compli-ance Division at MDE. Other experi-ences include administrative work inSherburne-Northern Wright SpecialEducation Cooperative and specialeducation teacher. In addition, she hasbeen on the adjunct faculty at St. CloudState, St. Mary’s University, and at theUniversity of Minnesota.

Troolin said she will bring the localdistrict perspective to MDE’s leader-

Alexa Posny

Barbara Troolin

ship team and looks forward to buildingrelationships inside and outside thedepartment. Her priorities includeimplementing the State PerformancePlan that mostly focuses on measuringresults for students with disabilities.

“Barbara Troolin has said she iscommitted to building positive partner-ships with parents and other stakehold-ers in the special education community.We know that parents and profession-als will appreciate her efforts on behalfof children,” said Virginia Richardson,PACER parent training manager.


Parents want to know: ‘Does advocating for By Marcia Kelly

At some point, you may meet with your child’s Individu-alized Education Program (IEP) team and you mayencounter an issue on which you and the other teammembers disagree. Maybe it will concern the services yourchild is receiving, or perhaps it will be about the IEP goals.Whatever the issue, it presents an opportunity for you to

play a role that only you can: your child’s advocate.While it might be tempting to avoid the conflict, “advocating

for your child with a disability is the most important job you’llever have,” says Carolyn Anderson, a parent advocate atPACER. “What you do is very important and can havelifelong implications,” she adds. Here are some specificreasons you may want to speak up for your child.

Parents learn how their leadership can help children“Four stars” is how one parent rated

PACER Center’s sixth Parent LeadershipConference, “Champions for Childrenwith Disabilities.” Other superlatives filledthe evaluations, too. The conference wasApril 28-29 at PACER.

Keynote speaker was Alice Seagren,Minnesota Commissioner of Education.She is the parent of an adult child with adisability and a parent leader at local,district, and state levels.

The event prepares Minnesota parentsof children with disabilities to serveeffectively in an advisory capacity onSpecial Education Advisory Councils(SEACs) and other interagency commit-tees, councils, and boards in their commu-nities. It offered parents informationabout federal and state education laws,special education finance, and ways to

have input into policymaking. Many of the parents attending said

they gained ideas for new, innovativeways to approach parent-professionalcollaboration. The event also offeredthem an opportunity to develop friend-ships with one another as part ofPACER’s statewide Parent-LeaderNetwork.

Andrea Watrus, a participant, wrotePACER, “I just want to say that youaccomplished, in that stellar conference,what many only hope they can do. I feelthe time I spent at the Parent LeadershipConference was the most valuable use oftime that I spent in a very long time. Theinformation presented and distributed isinvaluable as well as meeting all thedynamic participants and PACER staff.Thank you again. You rock!”

Special education directors andinteragency committee chairs seeking tofill advisory positions can contact BarbZiemke, at PACER (952) 838-9000 or(800) 537-2237 (toll-free in GreaterMinnesota). Parents and professionalscan also call Ziemke to request assis-tance in increasing the effectiveness ofparent involvement.

For publications and other resourceson leadership, go to www.pacer.org/parent/leadership.htm

Below left, Minnesota parents attendingthe leadership conference learned howtheir involvement in community committeesand councils can help children withdisabilities. Below right, Alice Seagren,Minnesota Commissioner of Education,addressed the conference.

4


my child with a disability make a difference?’Communicationskills go handin hand withadvocacy

Interested in being amore effective advocatewith your IEP team?These communicationtips could help.

■ ■ ■ ■ ■ Be self-aware. Do you have preconceived ideas?Are you aware of your own and others’ perspectivesand perceptions? Do you judge others?

■ ■ ■ ■ ■ Recognize your communication attitude. Are youpassive? Aggressive? Angry? Receptive? Friendly?Assertive? People will respond to your attitude asmuch as to what you say.

■ ■ ■ ■ ■ Listen more than you speak. Communication is atwo-way process. Other people may have valuableinformation and insights that you need to hear.

■ ■ ■ ■ ■ Ask questions. Direct your questions to the personmost likely to have the information or expertise youneed.

■ ■ ■ ■ ■ Be clear and honest. Don’t blame. Focus onsolutions instead. Limit criticism. Give positivefeedback and praise as often as possible. Focus onspecifics, not generalities.

You’re the OneFor starters, no one understands your child like you do.

You know his or her strengths, challenges, spirit, and dreamsbetter than anyone. You have a vision for your child’s futureand a sense of what it will take to achieve it. Your IEP teammembers need you to provide this information. Doing so willhelp the team align the IEP’s goals and objectives with thevision you have for your child. “Remember, too,” Andersonsays, “you are the permanent member of the IEP team.Therefore, you have more to offer and more to lose or gain.”

Not only do you have a unique understanding of yourchild, you also have a lifelong connection. “Once your childgrows up, the people from school will be gone,” Andersonnotes. “You will be left with the results, so it’s important tomake sure they are the ones you and your child want.”Advocating for your child over the years can help ensurethat outcome.

You Shape the FutureWhen you advocate for your child, you act in the present

to make a difference in the future, said Anderson. You mightnot realize it, but every time you stand up for your child’srights and speak out for his or her needs, you are modelingan essential skill: self advocacy. By watching you at IEPmeetings and seeing how to effectively express needs andopinions, your child will have the opportunity to learn a vitalskill that will be important for a lifetime.

Advocating for your child can feel challenging, evenintimidating. You might be shy or speak a different languageor feel that you aren’t equal to the professionals on the team.The fact is, however, parents are true partners in their child’seducation.

“You are an equal, but just on a different basis of qualifi-cation,” Anderson says. The professionals are qualified byvirtue of their education; you are qualified by virtue of yourrole as a parent. “That shouldn’t be underestimated as aqualification to be at the IEP table,” she says.

“It is always appropriate to advocate for your child asbest you can, even if you make mistakes,” Anderson adds.“Just learn and do better next time. There are many ways toincrease your skills.” PACER, for example, offers freeworkshops about special education law, leadership, andadvocacy. It also provides written materials, parent advo-cates, national speakers, and more.

Parents can advocate more effectively and appropriatelyif they learn about the system and the process of specialeducation. “If you do that, you are more likely to be success-ful in obtaining what your child needs,” Anderson says.

For example, she says, it’s helpful to realize that yourviewpoint is bound to be different from that of educators.

“Parents are free to focus on their child,” Anderson says.“Schools are government agencies and they have differentconstraints than parents do. Even the best staff people arenot free to be as focused on the child as the parent is.”

It’s also useful to know that schools are not required tooffer the “best,” only what’s appropriate for the child.“When parents understand this, they are more likely to besuccessful advocates,” Anderson says. “If you ask for‘what’s best for my child,’ you set yourself up for adynamic of opposition. If you instead ask for what’sappropriate for your child, you’re working within theprocess, using their language, and avoiding the adversarialdimension.”

In the end, advocacy is all about making sure your childreceives the services and education to which he or she isentitled. Your unique and valuable perspective can help theIEP team makes decisions that will benefit your child nowand in the future.

Carolyn Anderson


What puts students atrisk for dropping out?

Factors or markers that may lead toquitting school may be present early ina child’s life. However, many childrenbegin to respond to them, often withnegative behaviors, in the middleschool years—13 to 14 years old, saidRenelle Nelson. That is often whenparents contact PACER.

Risk factors are not precise indica-tors, cautioned Deborah Leuchoviusand Nelson. Some students may quitschool for no apparent reason, whileothers with a number of risk factorsgraduate. Following are some thingsthat may contribute to a student leavingschool:

EnvironmentFamily, peers, and community—all

influence how children and youngadults view school.■ An abundance of research shows

that family involvement has a majoreffect on a student staying in school.Without emotional and academicsupport from home, students are athigh risk for dropping out.

■ Some schools or communities may

not expect children who are raciallyand culturally diverse, children withdisabilities or who are from lowincomes families to do well in school.Low expectations may keep a childfrom trying.

■ Youth often adopt the attitudes offriends or others they admire. Associ-ates who do not like school or areuninterested in education can per-suade a susceptible student thatschool is not worthwhile.

DisabilitiesStudents with mental health disabili-

ties, such as learning disabilities, atten-tion deficit, fetal alcohol syndrome, orother neurological disorders, are at riskfor dropping out.■ Students having difficulty with an

academic subject may feel frustratedor discouraged, said Nelson. A studentwho does not qualify for specialeducation services or a Section 504(of the Rehabilitation Act) Plan maynot receive sufficient help. A studentreceiving special education, but doingpoorly, may need changes in his or herIndividualized Education Program(IEP), she said.

■ Research shows that students with

disabilities are at greater risk fordropping out if they have previouslybeen held back a year, if they areolder than other students in theirgrade, or if they have limited English,said Leuchovius.

BehaviorA student’s negative behavior is

often a factor in the failure to graduate.■ Behaviors may be part of a disability.

Behaviors that cause problems atschool may be associated with someneurological disorders.

■ Students doing poorly in an academicsubject may skip class or act out inthe classroom to divert attention fromtheir weakness, said Nelson. Skip-ping school, failing classes, significantdiscipline problems, and breaking thelaw often precede dropping out.

What can parents do?Parents influence how a child views

the importance of school. Following aresome ways to encourage your child todo well at school.

From home:■ Show your child that you value

education, said Leuchovius. Encour-

Can parents help prevent it?Dropping out:Dropping out:Dropping out:Dropping out:Dropping out:By Patricia Bill

When a child enters preschool or kindergarten, mostparents view the milestone as the beginning of a journeythat leads to high school graduation, employment, and asecure future. Few expect that their son or daughter will notcomplete their education.

Yet, many students—particularly those with a disability—drop out of school with sad consequences. Research showsthat unemployment, poverty, teen pregnancy, chemicalabuse, criminal activity, and many other problems oftenaffect people who do not finish high school.

Students who drop out of school are often discouraged,in a cycle of failure, not in control, and may engage in

negative behavior, said Renelle Nelson, PACER parent advo-cate and coordinator of PACER’s Project for Children and Youthwith Emotional or Behavioral Disorders.

“It may not be the student’s intention to drop out,” saidDeborah Leuchovius, coordinator of the Technical Assistance onTransition and the Rehabilitation Act (TATRA) project at PACERCenter. “Many students who quit school say that they simplystopped going one day. Some disliked school, had a problemwith a teacher or administrator, or had low grades. A numberthought a teacher or administrator wanted them to leave—andno one objected. Others have reasons unrelated to school, suchas pregnancy, caring for family members, or the need to work.”


‘WHY do you act that way?’“Why” is a question that parents and schools sometimes forget to ask a child

or young adult when behavior could lead to dropping out of school.“If your child cannot respond, look for a pattern to the behavior,” Nelson sug-

gested. She recalled a couple situations in which figuring out “why” kept teens inschool.

“Joe”Although he did well otherwise, “Joe” regularly misbehaved in his math class.When a PACER advocate asked the school and his parents why he might act

that way, pieces of the puzzle began to emerge. 1) Math was difficult for him.2) The class met during the weakest cycle of his medication. 3) The class wasright before lunch, and he was hungry.

The resolution: Joe should attend class for the instruction, but he could go tothe resource room during the work period for more individualized support. He couldalso have a snack break mid-morning.

“Jane”“Jane” was in her senior year when she became truant. Instead of going to

class, she was hiding in the restroom, hall, or media center. Eventually she facedsuspension. When her father called PACER, the advocate suggested he ask hisdaughter why she was skipping class.

Jane said she was “embarrassed.” Her parents had recently divorced and thegirl stayed with her father to finish high school. In addition to missing her mother,she faced questions and remarks about her mother from other students.

The resolution: the father spoke with the school’s social worker, and theyfigured out ways to help Jane.

Just the facts…About 14 percent of all youth 18 years and

older do not complete high school.—NationalCenter for Education Statistics, 1999.

The dropout rate for students with disabili-ties is approximately twice that of students ofthe general population.—J. Blackorby &M. Wagner, “Longitudinal Postschool Out-comes of Youth with Disabilities: Findings fromthe National Longitudinal Transition Study.(1996) Exceptional Children 62(5)

The percentage of students ages 14 andolder with disabilities who dropped out ofschool was 37.6 percent in 2001-02. It is adecline from 45.1 percent in 1993-94.—Twenty-Sixth Annual Report to Congress onthe Implementation of the Individuals withDisabilities Education Act (April 2006)

There is no single reason why studentsquit high school. It may be due to of lack ofconnection to the school environment, aperception that school is boring, feelingunmotivated, academic challenges, and theweight of real world events. Nearly half (47percent) of surveyed students said theirreason for dropping out was that classeswere not interesting. About 69 percent saidthey were not motivated or inspired to workhard.—“The Silent Epidemic: Perspectives ofHigh School Dropouts,” for the Bill andMelinda Gates Foundation (March 2006)

(Continued on page 8)

age your child to learn, know whatyour child is studying in school, tellyour child what you expect, and talkabout the future, she said.

■ Show your child how much youvalue education when he or she isyoung. Read to your child, play“school,” point out the schoolbuilding on drives or walks, post yourchild’s artwork, and do readinessactivities such as learning thealphabet and counting.

■ Point out the importance of home-work. It teaches your child responsi-bility, as well as subject matter. Beinvolved by promoting a regular timeand place to do homework.

■ Participate in your child’s schooling:■ Talk to your child and ask ques-

tions about the school day■ Read and respond to communica-

tions from school■ Become acquainted with teachers

and other staff■ Regularly visit the school’s Web

site■ Volunteer for the school■ Attend school events■ Meet and talk with other parents.

■ Know your child’s friends and theirfamilies. Connections among parentsbuild community and support foryour child.

■ Despite declarations of indepen-dence, most teenagers want theirparents’ support. Keep the lines ofcommunication open.

Through school■ Research shows that when students

are involved in school activities theyare less likely to drop out. Encour-age your child to participate insports, music, or other activities.Attend related events and otherschool functions.

■ Encourage your child to formrelationships with adults at school.Friendly conversations with ateacher after class or one-on-onemoments with an extracurricular

adviser may initiate a connection.Many students who drop out say theybelieve that no one cares.

■ Monitor your student’s attendance andschool performance. Check with yourchild’s teachers occasionally to seehow thing are going. Compliment yourchild if they are going well; offer helpif they are not.

■ Know and understand your child’sschool behavior policy and make sureyour child does, too. If your child hasnot brought a copy of the policy homefor you to read, ask the principal ordistrict office for one, or check theschool’s or district’s Web site. Ifsomething in the policy could presentproblems for your child, work withyour child and the school to keep yourchild in good standing. (Many schoolsare instituting schoolwide behaviorsupports that create a positive environ-ment for all students. Seewww.pacer.org/articles/pacesetter/winter03/posbehavior.htm.)

■ Tell the teachers and others at schoolto contact you if your child is having

7


(Continued from page 7)

Dropping out of school: Can parents help prevent it?

difficulties. Work together to resolveproblems before they escalate intosituations that will make your childwant to leave school.

If problems arise■ “Children and youth often meet their

needs through behavior,” said Nelson.“Many times professionals look at thebehaviors and forget to figure out theneeds that cause the behaviors.” If your child has failing grades,excessive absences, truancy, ordisciplinary issues that could promptdropping out, talk with your child, saidNelson. “Ask, ‘What do you need?’Kids are pretty good at knowing whatthey need. If the problems continue,

ask yourself ‘What am I missing?’and continue communicating withyour child,” Nelson said.Another route is to ask the school for

a functional behavioral assessment, saidNelson. It identifies why a child be-haves in a certain way and recom-mends positive ways to intervene andinstructions to address the behavior.■ If you suspect your child is using

drugs or alcohol, seek help for him orher immediately.

■ Ask to meet with your child’s teacher,school counselor, or social worker,said Nelson. If your child does notreceive special education services,does he or she need a Section 504Plan? If your child has an IEP, callan IEP team meeting to think about

changing goals and developing newstrategies. By law, you are a memberof your child’s IEP team.

■ “If you, your child, and the IEP teamconclude that your child won’t succeedin the current school environment, lookat a different setting,” said Leuchovius.Options include magnet schools, alterna-tive schools, charter schools, work-basedlearning programs, and general educationdevelopment (GED) programs.“Dropout prevention often begins with

helping a child learn to believe in himselfagain,” concluded Nelson. “Parents andschools have a major role in making thathappen.”

Check www.pacer.org for a newhandout,“Dropout Prevention: Par-ents Play a Key Role.”

By Patricia BillVacation trips often result in

travelers becoming moreinterested in the area visited.Usually as time goes on,however, the attention wanes.

Not so for a couple ofPACER staff. What began aspersonal trips for Paula F.Goldberg and Sue Folger todestinations across the worldhave resulted in collaborationto help children with disabilitiesand their families.

“Children with disabilitiesand their needs draw myattention wherever I am,” saidGoldberg, executive directorand a founder of PACER Center.

“When I vacationed in India in 2005with two friends, I noticed the criticalneeds of children with disabilities andtheir families there. We also sawcutting-edge resources that could makea difference for them. Based on myexperience in the United States and atPACER Center, I thought there must

Global concern for children with disabilities

Paula Goldberg (left) met in India with Sudha Murty,chairperson and trustee of the Infosys Foundation, and SudhaGopalakrishnan, trustee of the foundation.

be a way to match the two.”A few appointments paved the way.

Before she and her friends left India,they had visited with Indian govern-ment officials, toured many programs,and laid the groundwork for futurecollaboration. Now, plans are underway for a December assistive technol-

ogy conference in Bangalore,India, and creating a center likePACER’s Simon Technology, alsoin Bangalore, with help fromIndian and American companies.(See PACESETTER Fall 2005.)

There are many reasons to beinterested in India, said Goldberg.India has millions of children andadults who will benefit fromassistive technology. India is aleader in technology and partnerswith major American IT compa-nies. India’s education system isopen to research and demonstra-tion. India is the largest democ-racy in the world and an ally ofthe United States. Finally, propos-

als for assistive technology collaborationare receiving encouragement and support.

Sue Folger, co-director of the TechnicalAssistance ALLIANCE for ParentCenters (the national center is at PACER)also experienced international involvementwith children with disabilities. She visitedMalaysia with friends in April. Their hosthad asked if she would talk to a few


PACER Center is the national technical assistance center forthe Technical Assistance ALLIANCE for Parent Centers. Itserves the more than 100 Parent Training and InformationCenters (PTIs) and Community Parent Resource Centers(CPRCs) across the United States.

In turn, the parent centers provide training and assistance tothe nation’s families of 6.9 million children with disabilities.

Part of the ALLIANCE’s work is to document parent cen-ters’ effectiveness in helping families.

Following are results of a random 2004-05 telephone surveyof 5,000 parents using parent centers.■ 81 percent said that parent center assistance received via telephone

helped their child receive more appropriate services.■ 89 percent said that because of information received at a workshop,

they were able to work with the school to address a critical needrelated to their child’s education.

■ 84 percent said that parent center information and support helpedthem resolve a disagreement with their child’s school.

■ 93 percent said assistance from a parent center gave them theinformation to make a decision about their child’s education.

■ 98 percent reported that information received at parent center work-shops made them more knowledgeable about how to work with schools.

The following is based on reports of parent centers nationwide.■ Parent centers had more than 1.6 million contacts with parents and

professionals through training, presentations, calls, letters, homevisits, and e-mails.

■ More than 524,000 parents and professionals attended parent centertraining and presentations.

■ Approximately 37 percent of parent center contacts were withfamilies and professionals of culturally and racially diverse back-grounds.

■ More than 14,000 families were helped when parent center staffattended Individualized Education Program (IEP) meetings andmediations with them.

■ Parent center Web sites recorded more than 7.7 million visitors.ALLIANCE co-directors are Paula F. Goldberg, Sue Folger,

and Sharman Davis Barrett. Regional centers are in New Jersey,North Carolina, Ohio, Colorado, and California. In addition to ahighly regarded annual national conference, the ALLIANCEfacilitates three institutes for parent center staff from across theUnited States each year.

For more information about the ALLIANCE, parent centers,and their work, visit www.taalliance.org.

ALLIANCE provides technical assistance nationwide

prompts international collaboration

Sue Folger, third from left in rear, met with families ofchildren with disabilities and professionals on a recent tripwith friends to Malaysia.

9

parents of children withdisabilities while she was inMalaysia. Folger consented,believing it would be a simpleencounter with a handful ofpeople.

“Imagine my surprise whenI was led to a room with about80 people waiting to hear aboutthe work of parent centers inthe United States,” said Folger.

The scenario was repeatedseveral times during her trip.Folger also visited homes, localcenters, and an institution forchildren with disabilities.

At the institution, resourceswere unused because of thelack of trained staff.

“Things are very differentfor people with disabilities inMalaysia than they are in America, butthe families there want change. Parentsand the people working with childrenwith disabilities were amazed to hearabout what many of our children and

young adults with disabilities haveaccomplished with the appropriatesupport and accommodations,” saidFolger. “The people there are hungryfor materials and were thrilled to learn

about PACER’s Web site,” shesaid.

The examples of Goldbergand Folger illustrate the possibili-ties of international collaborationto improve the lives of childrenwith disabilities and their fami-lies. However, PACER has hadinformal global connections formany years. For example, itsCount Me In program is inEngland, Japan, and Australia(see page 10); PACESETTERgoes to a number of countriesupon request; and the Web site(www.pacer.org) has manyvisits from across the world. Inaddition, professionals fromother parts of the world contactPACER for tours when theyvisit the United States.

As nearly anyone would agree, theworld is becoming smaller. PACER’sexperiences merely echo the fact.


How to purchase PACER puppetsSelling COUNT ME IN and Let’s Prevent Abuse puppet packages to organizations across the

United States or abroad is not new for PACER. Puppets have been sent as far away as Australiaand Japan.

PACER puppets are unique, handcrafted works of art. The multicultural hand-and-rod puppetsare three feet tall. Basic packages include puppets, a custom-built bright redwheelchair, other props, scripts, and resource books.

All puppets and scripts are copyrighted and available only through PACERCenter.

Training may be arranged for groups purchasing puppet packages.Disability awareness and/or abuse issues, and puppetry techniques will betaught.

For information or to order a puppet package, visit www.pacer.org/puppets or call PACER Center at (952) 838-9000.

PACER’sCOUNT ME IN

puppets usuallytalk “Minnesotan”when they teachelementary schoolstudents aboutincluding childrenwith disabilities.For a new troupeof the puppets,however, Britishaccents are therule.

Relationshipsoften develop forPACER via visitsto its Web site at www.pacer.org. That was the case withPACER and Special Abilities, an organization located inWakefield, England, and home to the newest COUNT ME IN

puppets.Similar to what PACER does in America, Special Abilities

provides information and support for parents of children withdisabilities across the United Kingdom. Gillian Archbold is thedirector and the parent of an adult daughter, Sabrina, who hascerebral palsy. Gillian founded Special Abilities in 1999 andspearheaded the PACER connection.

Like PACER, Special Abilities has a goal of removingbarriers for people with disabilities. It wants to promoteinclusion in a way that makes an impact, Archbold said.Using puppets had been mentioned, but the board and staffdidn’t know where to start. Then Archbold spotted informa-tion about COUNT ME IN on the Web. She sent an e-mail to

PACER, and GloriaWilliams of COUNT

ME IN quicklyresponded.

“The e-mail wasso welcoming, Iwas encouraged tolearn more,” saidArchbold.

The exchangescontinued. SoonSpecial Abilitiespurchased a set ofpuppets andscripts. It also senta delegation toPACER for

training—a major undertaking for the English organization.Archbold realized the risk in making a large purchase sightunseen and committing seven staff and board members toan intercontinental journey, she said.

“I had no doubts, though, when I met the people atPACER and saw the puppets,” she said. “I knew instantly itwould be good.”

PACER puppet coordinator Lynn Dennis felt good, too,she said.

“They were such an enthusiastic and dedicated group,and it was such fun to see the puppets come alive in theirhands!” she said.

The Brits evaluated the training with an overall “Excel-lent” score. In addition, one new puppeteer responded thatwhat was most helpful was “knowing simply that such anexemplary organization [PACER] exists in the world.”

Special Abilities staff and board met the PACER’s Count Me In troupe. From left, SabrinaArchbold bonded with the puppet Sally; PACER’s Gloria Williams helped a newpuppeteer make adjustments; Gillian Archbold worked with Gina.

PACER puppets immigrate to England


BENEFIT ’06PACER Center’s 24th Annual Benefit, May 6, 2006 – A supplement to PACESETTER

“Better than ever!” That is how supporters of childrenwith disabilities and PACER Center described PACER’s24th annual Benefit. It was May 6 at the MinneapolisConvention Center.

In addition to pop star Michael Bolton’s performance, theBenefit featured a 1,000-item silent auction and a spectacu-lar live auction, with items that included a BMW sports carand a Twins package with Kirby Puckett’s jersey, worn andautographed (complete with juice stain) and tickets for fourto all seven of the World Series games.

“The success of the Benefit is the result of the hardwork of a fantastic Benefit committee, the wonderfulsupport of PACER’s many dedicated friends, and thecommitment of the community to help children with disabili-ties,” said Paula F. Goldberg, PACER’s executive director.

“Generous corporate sponsors and outstanding donationsto the live and silent auction items mean that Minnesotachildren with disabilities and their families benefit,” saidMary Schrock, PACER’s director of development. “TheBenefit affects many PACER programs.”

Honorary Benefit chairs were Bill and Tani Austin, StarkeyHearing Foundation. Benefit co-chairs Mary Frey, ColleenMcGough-Wood, and Danna Mirviss headed approximately 400volunteers. Silent Auction co-chairs were Patrice Alkire, LisaMiller, and Joan Valente. Patron Party sponsors were theAustins, with Alexandra and Irwin Jacobs as co-chairs. Dinnersponsors were Steve and Mary Sue Simon and Family. Recep-tion sponsor was Target Corporation, Friend of PACER sponsorwas Phyllis Heilicher, and Valet sponsor was Best Buy Com-pany. Emcees were Frank Vascellaro and Amelia Santaniello,husband-and-wife WCCO-TV news anchors.

The next PACER Benefit is May 5, 2007.

Benefit brings success, support

Below, Jerry Ruzicka and Honorary Benefit Chair Tani Austin,both of Starkey Hearing Foundation, looked forward to theBenefit program. Above right, Carl Pohlad and Irwin Jacobs arelong-time active PACER supporters. Below right, Joanne and DonDavidson met pop star Michael Bolton. Don Davidson co-chairedthe Benefit Corporate Sponsor Committee. Austin and DonDavidson serve on PACER’s Advisory Board.

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Thanks to the Benefit, PACER’shelp is free to Minnesota families

At left, long-time PACERsupporters began the eveningof the Benefit with a gourmetdinner. Seated are MarnieStimpson and Jerry and SarahCaruso. Standing are DanSeman, Frank Bennett, MaraBennett, Stacy Seman, andMuffy Bennett. Frank is co-chair of the PACER AdvisoryBoard, of which Muffy is alsoa member. Sarah is formerPACER Board of Directorspresident.

Benefit co-chairs were ColleeMirviss. All three have voluncommittee over the years. CoCorporate Sponsor Committepreviously headed the Silent

Above, Julie and Advisory Board memberCharlie Weaver were among the 2,500attending the Benefit. At left, Hayes Batsonand Alicia Kunin-Batson are active PACERvolunteers. Hayes was on the BenefitCorporate Sponsor Committee, and Alicia isa member of PACER’s Board of Directors.

At left, Kathy and HazenGraves, left, met up with TomBird, Catherine Shreves, JohnBessler, and Amy Klobuchar.Kathy is a member and pastpresident of PACER’s Board ofDirectors and has chaired theBenefit. Amy is a member ofPACER’s Advisory Board.

At right, Jim Oricchio was co-chair of the Benefit Corporate

Sponsor Committee. Part ofthe group attending with himwere Jennifer Oricchio Carey,Chad Carey, Kelly Benz, and

Jay Oricchio.

At left, PACER Development DirectorMary Schrock planned much of theBenefit. She and husband Dr. ChristianSchrock ended the evening with a smile.

12


en McGough-Wood, Mary Frey, and Dannateered in several capacities on the Benefit

olleen has worked extensively on theee and both Mary and Danna haveAuction Committee.

At right, Beth and ClarkBecker participated in the

festivities. Clark is a member ofPACER’s Advisory Board.

At right, Benefitprogram emcees

AmeliaSantaniello and

Frank Vascellaro,husband and wife

WCCO-TV newsanchors, right,socialized with

long-time friendGreg Davis of

Colorado, left.

Jessica and Rowan Broyles enjoyed the evening.Jessica is a member of PACER’s Board of Directors,in addition to serving as co-chair of the BenefitInvitation Committee.

Below, Kristin Stinar of KSTP-TV and Brad Geer were amongthe local celebs attending thePACER Benefit.

Below are John Valente, Heidi Kraemer,PACER Executive Director Paula Goldberg,Paul Ackerman, and Kristi Wieser. John is onPACER’s Board of Directors; Heidi is on theNational Business Advisory Board; andKristi is on PACER’s Advisory Board. Paul,from Washington, D.C., is a member ofPACER’s National Business Advisory Board.

13


Phyllis Heilicher, left, Friend of PACER Sponsor, is pictured withZehorit Heilicher and Danna Mirviss. Danna was Benefit co-chair.

Below, from left, Trenese Bellamy, Sandra Richardson, andVirginia Richardson ended the evening at the Patron Party.Virginia is manager of parent training at PACER.

At right, Richard Perkins, left, smiled for the camera with Ken andCharlie Rosenblum. “Perk” is a long-time member of the PACER

Advisory Board, as well as the Corporate Sponsor Committee.Ken was a member of the Corporate Sponsor Committee.

At right, attending with the McGough groupwere, from left, Kim Beecham, Janet McGough,

Mary Jean Sargent, Megan McGough, AimeeFierke, Colleen McGough-Wood, Brad Wood,Nicky Nagle, Tim Nagle, and Jean McGough.

Colleen was Benefit co-chair. She is also on thePACER Advisory Board. Janet, Nicki and Mary

Jean were Benefit Raffle co-chairs.

Above, Cynthia and Larry Holtz havesupported many PACER functions.

More Benefit...

Savethe date:

May 5,2007

14


By Patricia BillVibrant colors, imaginative elements, distinctive style, fun!

An Anthony Whelihan portrait?Well, yes, but in this case the words describe PACER’s

new art workshops for children of all abilities—Whelihan-inspired.

Creative Kids workshops are the brainchild of Whelihan,internationally known artist and long-time supporter ofPACER Center and children with disabilities. He developedthe idea and conducted free art sessions at PACER inFebruary and March. Local artists were on hand to assistand advise. Creative Kidstuff, Twin Cities-based retailer,donated art supplies. Through the project,■ Children with disabilities painted, drew, worked clay,

clipped, pasted, and exercised their imaginations andtalents. Each child produced at least one masterpiece, witha boost in self-esteem.

■ Children could submit artwork created at the workshops orhome for a PACER art contest. Ten finalists donated theirwinning pieces to the PACER Benefit Silent Auction. Thewatercolor-colored pencil creation of grand prize winnerJarek Bell-Isle became the design for PACER’s 2006greeting card.“This new program is beyond anything I anticipated and is

only going to get better as we move ahead to next year,”said Whelihan. “Wherever we went everyone was so willingto donate and wanted to be a part of Creative Kids. Watch-ing the kids with all the art materials was an experience…

PACER’s Creative Kids cardssupport children with disabilities

Notecards designed by Jarek Belle-Isle (page 1) can bepurchased at Twin Cities’ Creative Kidstuff stores andPACER, through the PACER Web site at www.pacer.org, orby calling PACER at (952) 838-9000.

They are $10 for a box of eight 4½ x 6¼ notecards andare printed on high-quality paper with accompanyingenvelopes. Jarek’s story and a description of PACERservices are on the back.

Production of the cards and envelopes is contributed byAmbassador Press, B&B Adcrafters, Gallery Services,Shapco printing, and DGInventif.

Participating in PACER’s Creative Kids workshop under thewatchful eye of artist Anthony Whelihan, right, are Alex Stanley,Sarah Gallaher, and Courtney Stanley.

As each kid completed his work, you could see that theywere all proud of what they had done. Some of the signatureswere bigger than the art itself…The one common denomina-tor that everyone seemed to possess was an infectious smile.Art is an integral part of our lives as it allows for expressionand creativity and can bring a smile to anyone, at least for amoment.”

Families wanting information about Creative Kids can call(952) 838-9000 (metro) or (800) 537-2237 (toll free fromgreater Minnesota).

Children cut up (draw, paint, and paste) at PACER

Izear Joiner concentrates on making just the right cut for hisCreative Kids art project.


By Marcia KellyEighteen may seem like a young

age, but in the eyes of the law,* itmeans a person is an independentadult. Being deemed an adult meansa person can do such things as vote,sign contracts, or consent to surgerywithout anyone else’s permission.That’s true even for teens withdisabilities who might not be able totake care of them-selves or manage keyareas of life, such asemployment, housing,nutrition, safety, or medical care.

If your teen is not able to make orcommunicate reasonable personaldecisions or is unable to manageessential personal needs, you maywant to consider the need for aguardianship. This legal tool grantsyou or another designated person thelegal authority to make decisions foryour adult child. Although a guardian-ship can be implemented at any time,developing one by your child’s 18th

birthday can help ensure a smooth

Considering a guardianship: Is it somethingtransition from childhood to adulthood.Considering whether a guardianship isappropriate for your family is an impor-tant part of your overall planning foryour child’s future.

How a guardianship can help“A guardianship focuses on a

person’s well-being—and their vulner-abilities,” explains Minneapolis attorney

Bob Gunderson.“Having one in place by

the time your child is 18helps you manage thattransition when many

changes are occurring. Your child may beleaving school and going to a vocational orresidential setting.They’ll be leaving thepediatric clinic whereeveryone knows themand facing a differentset of players in theadult medicine clinic. If you don’t have aguardianship in place and your child is notable to make appropriate decisions, there’sno one to give direction. As a result, youmay be shut out and your young adult

could be more vulnerable,” he says.“I always tell moms and dads, ‘this

guardianship does not change yourrelationship with your child. What itchanges is your relationship with theoutside world,’” he adds.

With court approval, a guardian mayhave power in up to seven areas:housing, day programs (such as schoolor work), medical care, contracts, publicassistance, general supervisory power,and control of personal effects,Gunderson says. If the court is satisfiedthat your child is unable to manage all ofthose areas independently, unlimitedguardianship is granted. If your childcan manage some areas but not others,

limited guardianshipwill be granted.

Establishing aguardianship hassignificant implications

for your adult child. On one hand, itputs protections in place so your son ordaughter can live life more safely, withas much self-determination as possible;on the other hand, it limits civil rights.

By Bob Brick, Public Policy, PACERThe Minnesota State Legislature

adjourned on May 21 after passingmajor bills dealing with a supplemen-tal budget, bonding, taxes, andstadiums. For education, the resultswere less dramatic.

Legislation affecting early child-hood education through grade 12 didnot yield major changes, but itprevented the passage of proposalsthat parents and others believe wouldhave an adverse effect on childrenwith disabilities. One such proposalwas to repeal all state laws and rulesthat exceed federal minimum stan-dards. Another shifted responsibilityfor the burden of proof in due process

hearings from schools to parents.The supplemental budget bill autho-

rized changes to and increased fundingfor the state’s early intervention systemfor children with disabilities (oftenreferred to as Part C of the federalIndividuals with Disabilities EducationAct). Observers expect the eligibilitycriteria for the program will change sothat infants and toddlers who have beenabused or exposed to other risk factorsmay be eligible for early interventionservices. The bill included funding forearly childhood family education andchild care assistance targeted tofamilies who are on a waiting list for thebasic sliding fee program.

The bill also authorized $10 million in

new funding for mental health, primarily byadding funds for crisis services andincreasing rates for psychiatrists and othercritical mental health professionals.

The bill required broad stakeholderinvolvement before significant changescould occur in the existing publiclyfunded health care programs that wouldaffect benefits or require persons withdisabilities to enroll in managed careprograms.

The bill also required the Departmentof Human Services to notify stakehold-ers before proposing changes to thefederal government under the FederalDeficit Reduction Act, which wouldaffect the state’s medical assistanceprogram (including waivered services).

Legislature adjourns with little impact on education

18 year olds areadults in Minnesota

Guardianship does notchange the relationship

with your child


your son or daughter will need at 18?Balancing values of independence andprotection can be a challenge.

Depending on your adult child’sneeds and wishes, you may considerless restrictiveoptions beforechoosing guardian-ship. A health caredirective, for example, is a writtendocument that describes a person’swishes about their health care. If aperson is able to understand and signthe document, it can be used to namean agent, such as a parent, to makedecisions if the person is unable tomake or communicate their health carechoices.

Choosing a guardianIf you do opt for a guardianship, you

will want to want to think about whomshould assume that duty. In manyfamilies, parents take on the role for aslong as they are able. When parents dieor can no longer do the job, someoneelse must be named. That person mightbe a sibling, relative, or trusted friend.You may even want to select co-guardians, such as a parent and asibling, to share the responsibility.

There is no exact formula to guideyou as you choose an appropriateguardian. You may, however, find ithelpful to consider the following factors:

■ Age. If the prospective guardian isclose in age to your adult child, he orshe may be able to serve for a

lifetime. If youchoose someonewho is significantlyolder, such as agrandparent, your

adult child may need a contingentguardian.

■ Relationship with your child. Aguardian makes important personaldecisions that will have a significantimpact on your adult child. You willwant to choose someone who has aloving, respectfulrelationship with yourchild and will makedecisions that supporthis or her values, desires, andindependence.

■ Willingness to serve. Acting as aguardian is a big commitment. Who-ever assumes the role should do sowillingly and not feel pressured into it.

■ Proximity. Living nearby will help theguardian to pay proper attention toimportant issues and maintain a closerelationship with your adult child.

■ Skills. A guardian should be ethical,able to communicate effectively,have good organizational skills, and

feel comfortable dealing with thecourt and other such agencies.Choosing to have a guardianship of

your child is a big decision, but it still hassome flexibility. “It does not have to beforever,” Gunderson says, noting that ifyour child becomes able to manage hisor her affairs, the court can end theguardianship. Keep in mind, too, that thecourt reviews the arrangement eachyear. The scope of the guardianship canbe renegotiated or a different guardiancan be chosen.

If you are considering guardianshipfor your adult child, you no doubt will

have many questions.Many factors will weighinto your decision. Everysituation is unique, so it is

advisable, although not required, to beginby consulting an attorney at least six toeight weeks before your child’s 18th

birthday. You may also want to seekinformation from disability-specificorganizations, the Minnesota Depart-ment of Human Services, your county’sdistrict court probate division, yourcounty social worker (if you have one),or PACER Center. Learn more aboutthis important topic at www.pacer.org orby calling PACER at 952-838-9000.* In Minnesota, the age of majority(adulthood) is 18. Other states’ laws vary.

A guardianship helps secure the personal well-being of youradult child. If you also need to address your child’s financialneeds, you may want to investigate these options.■ A conservatorship is a court order that gives one person the

legal right to manage another person’s estate, such as his orher finances and property. If your adult child has significantassets, this may be an appropriate choice. However, if youradult child with a disability is eligible for and participates inpublic assistance programs, having such assets may dis-qualify them from benefits. You may want to think about otherways to provide financial oversight.

■ A power of attorney allows a parent or other selected adult topay bills and make other financial decisions for anotherperson without removing any basic civil rights, as a guardian-ship does. The person must have the ability to understand

Keeping your child solvent is the concernand sign the document presented to him or her.

■ A special needs trust is funded by the person’s own funds.Money in this type of trust does not disqualify a personfrom public assistance programs.

■ A supplemental needs trust is funded by someone otherthan the person with the disability. Like a special needstrust, these assets do not disqualify a person from publicassistance programs.

■ A Supplemental Security Income (SSI) representativepayee, designated by the Social Security Administration(SSA), is authorized to receive and disburse SSI financialbenefits for your adult child. He or she makes a report eachyear to the SSA, accounting for how the funds have beenspent.

It does not haveto be forever

There is no formula forchoosing a guardian

17


By Patricia BillCommon sense and the desire to

help families went hand-in-handwhen PACER Center created theSimon Technology Center (STC)

Library nearly 20 years ago.The rationale for the technology

center’s lending library is:■ Assistive technology, including

computer hardware and software,

can help people with disabilitieslearn, communicate, and be moreindependent.

■ Some assistive technology isexpensive—a major purchase forthe budgets of many families. A

STC’s lending library accommodates needs

By Marcia KellyThey are the kinds of things that happen every day. Maybe

a stranger knocks at the door, or perhaps the bus doesn’t comeon time. Maybe a telephone solicitor requests personal infor-mation.

Would your young adult with a disability know how to handlesuch situations? It’s more than an academic question. Knowinghow to respond when things go wrong, feel scary, or may bedangerous is important to being safe.

As children with disabilities become youth and adults in thecommunity, it is vital that they have the skills and resources tostay safe. You can help your child prepare for this aspect ofindependence in many ways.

“Think about your young adult being in the community,” saysSue Fager, a PACER transition specialist. “Now imaginesomething upsetting happening. What skills or resources wouldyou wish were in place for your child before it happens?”

Those are the kinds of questions that you might want to startdiscussing with your child. “The answers will be unique to eachfamily,” Fager says. Your child’s disability, skills, and livingsituation will all be factors to consider as you have this conver-sation. If your child is receiving transition planning servicesthrough an Individualized Education Program (IEP), you maywant talk with the IEP team about including safety goals.

Fager recommends looking at six areas when thinking aboutsafety for your transition-age young adult.

Self-advocacy skillsHelp your child develop healthy boundaries and effective

communication skills. You may want to encourage your child topractice communicating messages such as “No.” “Leave mealone.” “I need…” “I want…”

Disability-appropriate supportsPeople with a communication or behavior disability may find

it helpful to carry a card that could be used to communicatewith others, including the police. The card might containinformation such as

■ your child’s name■ a sentence stating the disability and how it might affect your

child’s ability to handle situations■ a phone number of someone who could be contacted

Safety networkHelp your child identify safe people and places in the

community. This list might include:■ Neighbors■ Community helpers such as fire fighters, police officers,

security guards, doctors, or nurses■ Public places such as a fire station, police station, place of

worship, hospital, or clinic

ResourcesYou never know when or where a problem might arise.

Make sure your child always has a way to reach someonewho can help. Provide a cell phone—and emergency phonenumbers—for your child to carry at all times

TransportationHelp your child learn to “expect the unexpected” and

know what to do. For example,■ Explain that if someone makes your child feel uncomfortable on

the bus, he or she could move closer to the driver.■ Discuss what your child should do if the bus goes on a detour

or breaks down. This response might include calling you oranother trusted adult on the cell phone.

Common senseCommon sense safety tips are good for everyone—with or

without disabilities. Here’s a good list for the whole family toreview.

At home:■ Keep doors locked at all times.■ When you leave, lock your windows.■ Don’t open your door to strangers or let them into your

building, apartment, or house.■ Have a working fire extinguisher and know how to use it.Out and about:

■ Don’t leave a purse in grocery basket when you turn away.■ Don’t give personal information to strangers.■ Stay alert to what is going on around you.It’s a big world out there. With some discussion and

planning, it can be a safer one, too.

Safety: It takes planning and educating, too

18


Sociability, science, math— theyare only a few of the subjects coveredon software that Laurie Case hasborrowed from the Simon TechnologyCenter (STC) Library for her 8-year-oldson, Harlow.

Over the last couple of years,Harlow, who has autism, and his familyhave regularly visited the library.

“The staff is wonderful abouthelping me find things,” said Laurie.

She and Harlow found a softwareprogram on social behavior to be ofparticular help.

“Harlow has learned some thingsabout how to interact on the play-ground,” said Laurie. “The program isset up in a way so that it is interestingand entertaining.”

In fact, she thought the softwarewas so good, she took it to Harlow’sschool and to Harlow’s therapy with arecommendation that they buy it, shesaid. The professionals agreed, sheadded.

The Case family found an extrabonus in borrowing software from the

STC library. Harlow’s twin brother,Richard, and his younger brother, Ezra,who has an attention deficit hyperac-tivity disorder, also enjoy the pro-

grams. In addition to using them forHarlow’s needs, the programs aresomething the family can do to-gether, said Laurie.

Harlow Case uses the STC lending library for vital instruction and enjoyment.

STC library’s materials prompt family’s regular visits

lending library offers individuals anopportunity to try the technologybefore making a purchase.

■ Insurance companies, medical assis-tance, and other funders often requiredocumentation that an item will benefitthe user before they will support apurchase. Individuals can borrow anitem from the STC library to demon-strate its effectiveness.The lending library is part of

PACER’s multifaceted STC project,which also includes individualizedconsultations, workshops, demonstrationsand fairs, and publications.

The library has approximately 1,700items, said Katrina Weibel, the assistivetechnology specialist who oversees it. Itincludes up-to-date software programs;

hardware, such as adaptive mice andkeyboards; adapted toys; books;videos; and communication devices.The software emphasizes educationskills in reading, writing, math, andother academic subjects; independentliving skills; problem solving; andmany other areas.

A recent service of the library isthe A.T. Finder, an online catalog oflibrary items. It allows families tosearch by category, specialization,age, keyword, and other ways, and itprovides a description of eachprogram and feedback from familieswho have used it.

Last year 856 persons visited thelibrary and borrowed 2,147 items.The majority of users (72 percent)

were parents and families. Otherswere schools, professionals, organiza-tions, and adults with disabilities.

The library is open from noon to6 p.m. on Tuesdays and 10 a.m. to4 p.m. on Saturdays. It closes onholidays. There is an annual member-ship fee for an individual or family of achild with a disability. Scholarships areavailable. Members who are unable tocome to the STC in person mayreceive items by mail, and they areresponsible for return postage.

Said one parent, “We have a muchbetter understanding of what ispossible with a computer. I lookforward to further exploration of myson’s abilities and strengths throughthe computer.”

of families of children with disabilities


Join PACER inhelping families

Volu

ntee

r!

Volunteer Opportunities

PACER serves the community by helping families ofchildren with disabilities. Take a look at the opportunitiesbelow and think of how you can help make a difference inthe lives of children with disabilities.

For information, call PACER at (952) 838-9000 or visit www.pacer.org

Be a puppeteer for■ COUNT ME IN■ LET’S PREVENT ABUSE

Do clerical tasks at PACER

Help with PACER Center events■ Annual Phonathon■ Benefit Silent Auction■ Benefit Corporate Sponsor

Committee

By Judy Swett, Parent AdvocateResearch shows that family involve-

ment helps children succeed at school.Parent support is especially importantfor a child with disabilities.

Knowing how your school districtfunctions can help you participateeffectively in your child’s education.Following are some things to know:

CurriculumThe Individuals with Disabilities

Education Act (IDEA 2004) makes itclear that students receiving specialeducation services have a right to beinvolved and make progress in thegeneral education curriculum (set ofcourses).

It is important to know yourdistrict’s curriculum and understandhow it relates to your child’s education.Be aware of specialized educationprograms that might benefit your childand requirements for the programs.

Policies and proceduresStudents who receive special

education services are considered partof the general education population andare subject to the policies and proce-dures that govern all the district’sstudents. A copy of the district’s policy

is probably available from your child’sschool office, district offices, or thedistrict’s Web site.

Be aware of how specific policiesmay affect your child. Knowing thepolicy will help you advocate for yourchild when considering accommoda-tions, modifications, or supports andwriting an education plan, such as theIndividualized Education Program(IEP).

Policies may address:■ Transportation■ Bullying and harassment■ Behavior and school climate■ School choice■ Attendance policies■ Absentee and tardiness policies■ School year calendar■ Attendance area boundaries■ Deadlines for enrollment■ Graduation requirements

Making policyParents can guide district policy

decisions by identifying issues, influenc-ing decisions, and improving schoolprograms. You do not have to be anexpert in education, curriculum, assess-ments, or education finance to ask good

questions. Credit your experience andtrust your common sense.

Advisory councils and districtwidecommittees seek parent involvement andprovide opportunities to help manystudents, including your own child.Districtwide committees may include:■ Special Education Advisory Council

(SEAC). Each school district musthave one, and at least 50 percent of itsmembers must be parents of childrenreceiving special education services.

■ Interagency Early Intervention Com-mittee (IEIC). The group affectsservices for children and families frombirth to age 5.

■ Community Transition InteragencyCommittee (CTIC). The groupaddresses services for students 14–21years old.

■ District advisory committees usuallyfocus on areas such as curriculum,space and facilities, and budget. Somegenerally advise the superintendent orother administrators.

AdvocatingSome education situations, such as

budget cuts, changing programs, movinga program to a different location, orstaffing changes need a parent view-point. If such issues arise, you canadvocate for all children involved,including your child. One way is toreach the school board, which governsthe district. Contact school boardmembers or attend a board meeting.

To approach individual boardmembers: Names and contact informa-tion for individual members is usuallyposted on the district’s Web site or othercommunications. Some communitytelephone books list them.

If you live in a small town or suburb,you are likely to know a school boardmember as a neighbor, member of yourfaith community, or parent of yourchild’s friend. Offer your opinion infriendly conversation.

Know your school district: It’s a step to


To address the school board:School board meetings are public. Theboard may discuss some matters, suchas personnel issues, in closed sessions.Parents can obtain information aboutupcoming school board meetings bycalling the school district or visiting itsWeb site. Many local newspapers alsopublish information on school boardmeeting dates, times, and locations.

If you wish to speak at a schoolboard meeting, you will need to know■ Dates and times of school board

meetings■ Location of the school board meetings■ How to be scheduled on the agenda

(a requirement in most districts)■ What matters are excluded from

public discussion

Reporting requirementsThe federal No Child Left Behind

law created new reporting requirements

for school districts. Each school andschool district receives a “SchoolReport Card” every year. To obtainthe report cards, visit the MinnesotaDepartment of Education Web site athttp://education.state.mn.us ; click on“Academic Excellence” at the top ofthe page; then scroll down to “SchoolReport Cards.” Scores are listed byschool or district. The site providesinformation on:■ Student population and demographics■ Attendance rate■ Graduation rate■ Report on Adequate Yearly Progress■ The district ranking for the Minne-

sota Comprehensive Assessmentsand the Basic Skills TestAs a parent, know the types of

districtwide assessments, when thetests are given, and how students inspecial education fare on these tests

compared to children in regular educa-tion. It is important that students on IEPstake part in the tests or alternativeassessments so that the district isaccountable for educating all students.

Learning about the local school districtmay take some effort on your part, butmany parents find that the results inhelping their child—and others—areworth the investment.

involvement in your child’s education

Thousands of people each month visitwww.pacerkidsagainstbullying.org, PACER’s successfulbullying prevention site for elementary school children.

“Response from the children, as well as from parentsand professionals, has been positive and enthusiastic,”said Julie Hertzog, bullying prevention project coordina-tor. “It is gratifying to know that PACER is addressinganother important need of children.”

Users logging on can■ Meet the Club Crew—12 animated characters■ Watch celebrity and children’s videos■ Play interactive games■ Vote in polls■ Enter contests and win prizes

The Web site is a project of PACER’s NationalCenter for Bullying Prevention. It is funded in part by theRobins, Kaplan, Miller and Ciresi LLP Foundation forEducation, Public Health and Social Justice, a supportingorganization of The Minneapolis Foundation; Wells FargoFoundation Minnesota ; the Bigelow Foundation; and thethe Beverly Foundation.

The site has generated fan mail. Excerpts follow:

“This is an awesome Web site! I particularly likedthe real kids talking about what bullying is, how itfeels, and what to do about it. I also liked theinteractive Webisodes. The resources were great!”Gina, school social worker

“I love it! I am like Molly. I have cerebral palsyand every day I use my walker at school…I LOVETHIS SITE!!!! Twelve-year-old girl

“I am a psychologist and work primarily withchildren, adolescents, and families. I want to thankyou for putting together a Web site on bullying. Ihave found that children like the site and havebenefited from it. Good job!” A professional

“Your site couldn’t have come at a better time.My daughter experienced a bullying moment a weekago. The site helped her process what happenedand gave her valuable information on what to do.”A parent

PACER’s Kids Against Bullying Web site earns praise

It’s a workshop for parents who areon a SEAC—or would like to be.Also featured: tips on understandingYOUR school district.

“Parents and Local SpecialEducation Advisory Councils”

Thursday, Aug. 17

Call PACER at (952) 838-9000 orvisit www.pacer.org


Resources

Housing: Where Will Our Children LiveWhen They Grow Up?

This long-awaited resource offersconcise, easy-to-read-and-understandinformation about housing options forpeople with disabilities. Whether their childis near adulthood or a newly diagnosedpreschooler, parents of children withdisabilities will find that the book answersmany of their questions about housing and future choices tomake with their child.■ $8 10+ copies, $6 each PHP-a26

A Guide for Minnesota Parents to theIndividualized Education Program(IEP)

The 2005 edition of this booklet continuesto be a staple for Minnesota parents ofchildren in special education. It explainswhy parent involvement at IEP meetings isso important, and it guides families through

the IEP process, clarifies the Minnesota forms, and explainsthe information parents need for them to make informeddecisions about their child’s education.■ $3 10+ copies, $2 each PHP-a12 Is Your Child a Target of Bullying?

The new, one-of-a-kind, 30-page curricu-lum is for parent audiences. The appealingdesign and easy-to-understand suggestionsare sure to inform and encourage families asthey address this troubling problem. Trans-parencies are available on CD-ROM or inthree-ring binder.$15 CD-ROM ALL-19 (English) or ALL-19sp (Spanish)$165 color transparencies and script in a notebook binder

ALL-20 (English) or ALL-20sp (Spanish)

Disability Awareness ManualThis book is a MUST for every parent andprofessional working with children withdisabilities. The readable, but comprehensive,content covers a multitude of issues affectingchildren and young adults with disabilities.From questions about inclusion to a chapter onthe law, it features helpful, usable resources.$10 10+ copies, $7 each CMI-1

A Guidebook for Parents ofChildren with Emotional orBehavioral Disorders

The popular book presents basicinformation about emotional andbehavioral disorders, the type ofprofessionals who provide mentalhealth services to children and

adolescents and how to select them, school-basedservices, recommended reading, and more. The 144pages of this fourth edition are packed with pertinentsuggestions for parents.■ $12 10 + copies, $7.50 each PHP-a8

NEW EDITION NEW

Facilitated IEP Meetings: An Emerging Practice

The eight-page guide introduces IEPfacilitation to help special education planningteams reach agreements. It is published byPACER’s Technical Assistance ALLIANCEfor Parent Centers project and the Consortium for Appro-priate Dispute Resolution in Special Education (CADRE).■ $3 10+ copies, $2 each ALL-26

Toys: Universal Tools for Learning,Communication and Inclusion for Childrenwith Disabilities

NEW

Most experts agree that play affects anychild’s development. The booklet outlinesage- and ability-appropriate toys, in additionto information on buying toys and tips foradapting toys for specific needs.■ $3 10+ copies, $2.50 each STC-14

NEW EDITIONThe Road to Work: An Introductionto Vocational Rehabilitation

The third edition of this book for youthand adults with disabilities and theirfamilies reflects the current version oflaw. It discusses issues related to theRehabilitation Act, including eligibilitycriteria for vocational rehabilitationservices, transition planning for high school students, andother legislation and self-advocacy skills.■ $8 10+ Copies, $6.50 each VO1


1. Specify how many you want of each item and the cost2. Total your order, adding appropriate sales tax3. Enclose payment with your order4. Mail to: PACER Center

8161 Normandale Blvd.Minneapolis, MN 55437-1044

To order the listed materials...

Please complete the following:

❑ Parent ❑ Professional ❑ Other

Name: Organization (if applicable): Address: City, State, Zip: Telephone: (h) (w) E-mail: If a parent:Birth date of child with disability: Disability:

Prices include postage and handling. A discount may be available if 10 or moreof the same item number are ordered.

■ indicates one item is free to Minnesota parents or guardians of children withdisabilities and to Minnesota young adults (age 14 and older) with disabilities.

For foreign orders, please telephone or e-mail PACER (see page 2). Paymentmust be in U.S. dollars drawn on a U.S. bank.

The items listed on these pages are also available through PACER’s Catalog ofPublications.

Order number Quantity Total item cost

Total cost of all items ordered ➙

Per item costName of publication/video ordered

Amount of order: Sales tax: Total amount enclosed: (Minnesota residents, 6.5%; Minneapolis residents, 7%)

Resources

PACER Center’s Catalog of PublicationsThe free catalog describes more than 200 PACER re-

sources for families of children with disabilities and profes-sionals working with them. Most listed items are free toMinnesota families of children with disabilities.

For these materials and many more!

NEW DVD

Technology: Making a Different WorldThe three-minute overview of PACER Center’s Simon Technol-ogy Center shows how assistive technology can help childrenand adults with disabilities develop and use skills that lead toinclusion at school and in employment. $5 STC-13

NEW

No Child Left Behind and Studentswith Disabilities: A Curriculum forParent Trainers

The new curriculum includes topics thatfamilies need to know about to ensure a qualityeducation for their children with disabilities.School choice, supplemental services, and

adequate yearly progress are only a few. The curriculum isin an electronic PowerPoint™ or printed overheads format.$15 CD-ROM ALL-27$295 Overheads in 3-ring binder ALL-28


Non-Profit Org.U.S. Postage

PAIDPermit No. 2723Minneapolis, MN

InsideIDEA report

Mann Symposium

Posny, Troolin

Why advocate

Drop out prevention

International concern

ALLIANCE facts

Puppets go to England

PACER Benefit

Creative Kids

Guardianship

Planning for safety

STC libraryKnow your school districtResources

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Address Service Requested

PACER Center, Inc.8161 Normandale Blvd.Minneapolis, MN 55437-1044

Being a parent is challenging, but having a child with adisability may bring extra challenges. That’s why there’sPACER Center.

A national nonprofit parent center, PACER has servedfamilies of children with disabilities and special health needsfor nearly 30 years. PACER provides expertise and resourcesto help families make decisions about education, vocationaltraining, employment, and other services for children andyouth with all disabilities.

How can PACER help me?If you have a question or need help for your child with a

disability, contact PACER. Most PACER staff are parents orfamily members of children with disabilities. They share yourexperience. They understand.

PACER has 30 projects. Some are national or internationalin scope; many are specific to Minnesota. All focus on ways tohelp children with disabilities succeed at home, at school, andin the community.

If you live in Minnesota, you can call PACER’s parentadvocates who will help you understand the laws that affectchildren with disabilities.

How do I contact PACER?By telephone, Web sites, e-mail, or fax.If you call during PACER office hours, a staff member will

answer the telephone and take information about your situationand link you to the appropriate PACER project. If you are not

directly connected, a staff member from that project will callyou back, usually within 48 hours.

PACER telephone numbers are(952) 838-9000 (main number)(800) 537-2237 (Minn. toll-free)(888) 248-0822 (national toll-free)(952) 838-0199 (fax)

Send e-mail to [email protected] Center’s postal address is 8161 Normandale Blvd.,

Minneapolis, MN 55437.

What are PACER hours?PACER’s switchboard is open from 8 a.m. to 5 p.m. Mon-

day–Friday. There is voice mail at other times. PACERobserves federal holidays.

Where can I learn more about PACER?PACER’s Web sites are:

■ ■ ■ ■ ■ www.pacer.org (principal site)

■ ■ ■ ■ ■ www. taalliance.org (technical assistance for the nation’s100 parent centers)

■ ■ ■ ■ ■ www.fape.org (information on the Individuals with Disabili-ties Education Act - IDEA)

■ ■ ■ ■ ■ www.c3online.org (Connecting Youth to Communities andCareers)

■ ■ ■ ■ ■ www.pacerkidsagainstbullying.org (bullying prevention)

PACER helps families of children with disabilities

a news magazine of pacer center, inc. by and for parents ...2 pacesetter –s ummer 2006 call (952)...

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