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Summer 2008
In this issue:
Mann Symposium
New web resource
Staff member awarded
Through the eyes of teens
Mapping careers
Finding accommodations
New book on autism
Benefit
International Web site
Fun Times expands
Program changes lives
Puppets for sale
Ted and Roberta Mann Foundation National Symposium features dynamic speakers
Just in time for the new school year, this popular symposium offers an outstanding learning opportunity for 900 general education teachers and parents interested in understanding more about children’s mental health and learning disabilities.
The Third Annual Ted and Roberta Mann Foundation National Symposium for Children’s Mental Health and Learning Disabilities is Wednesday, Aug. 13, at the Sheraton Bloomington and is cosponsored by PACER. In addition to numerous breakout sessions, this free event features these dynamic keynote speakers:
Adolph “Doc” Brown is an original thinker and engaging presenter who has developed meaningful messages for audiences from all walks of life. A professor who has been involved in education for more than 35 years, he uses humor and offers hands-on, practical strategies that help all succeed.
Jonathan Mooney is an activist and writer with dyslexia who did not learn to read until he was 12 years old. Despite childhood challenges, Mooney graduated from Brown University, received an honors degree in English literature and became a published author and sought-after speaker. He is founder and president of Project Eye to Eye, a national mentoring and advocacy organization for students with learning differences.
Richard Pimentel is one of the nation’s leading experts in the nation on attitude change, overcoming barriers, disability and diversity issues in the workplace, the Americans with Disabilities Act, and related issues. An author, speaker, trainer, and senior partner in the firm of Milt Wright & Associates, Inc., Pimentel combines information, humor, metaphor, analogy, and storytelling into a memorable presentation. A motion picture of his life story, “Music -Within,” was released last year and is now available on DVD.
Teens from PACER Center's Youth Advisory Board will also make a presentation, sharing their personal stories and inspiring confidence
that people with mental health disabilities have much to offer society.
Roberta Mann Benson, sponsor of the event, "has a passion for raising awareness about adult and children's mental health and learning disabilities among teachers, parents, and the general public," says Mary Schrock, PACER Center development director. "This symposium will inspire and enlighten parents and professionals alike."
All seats for the event have been filled and registration is closed.
PACER extends a special thanks to Roberta Mann Benson for her important support.
Minnesota special education task force to continue review
By Kim Kang
A task force formed by the Minnesota State Legislature will continue its review of state special education laws for another year. Its extension was approved by the Legislature in May.
Many parents and other special education stakeholders who are concerned about possible changes in state special education laws have been following the review process associated with this task force.
“Minnesota has always been a leader in special education, and we want to ensure that those quality services continue,” says Paula Goldberg, executive director of PACER.
The 2007 legislative session created the Special Education Task Force to compare the federal Individuals with Disabilities Education Act (IDEA) requirements with Minnesota laws and rules.
The task force was composed of 10 members: four parent and parent advocacy organization representatives, five school representatives, and the Minnesota Department of Education. The Minnesota Department of Education participated as a non-voting member. The purpose of the task force was to determine which Minnesota laws exceeded federal laws and provide recommendations on which ones to eliminate.
Some of the laws that were determined to exceed federal laws were: transition services beginning at age 14; dispute resolution processes such as conciliation and facilitated Individual Education Programs (IEPs); and the state law which places the burden of proof on school districts to show that they complied with special education laws.
While the task force was able to complete a review of both statutes and rules, they were not able to complete a comparison of Minnesota rules that exceed federal laws. The bill approved by the Legislature will extend the task force for another year so it can complete its work. The bill adds another person representing a parent advocacy organization to the task force to provide equal representation and allows the task force to make recommendations on how to change laws and statutes.
PACER remains committed to supporting many excellent Minnesota laws that may not be in 2004 Individuals with Disabilities Education Act (IDEA).
PACER launches new resource on school discipline
Anyone with questions about school discipline and children with disabilities in Minnesota has a new interactive resource on PACER Center’s Web site.
Whether you have a student who is on an Individualized Education Program (IEP), a Section 504 Plan, or you suspect your student may have a disability that affects his or her behavior at school, “School Discipline and Children with Disabilities: An Interactive Guide for Minnesota Families” is for you.
Minnesota’s rules for disciplining students with disabilities are specific. Parents and school personnel have had to carefully read through the discipline procedures outlined in the Individuals with Disabilities Education Act (IDEA), Section 504 of the Rehabilitation Act of 1973, the Minnesota Pupil Fair Dismissal Act and Minnesota’s special education laws and rules to discern which rule applies. Now, parents and professionals can find information a few clicks away.
The guide:
- Takes both parents and school personnel step by step through the Minnesota discipline process for each type of program (IEP, 504, or suspected disability), behavior, and discipline.
- Provides school personnel with a quick review of the procedures that must be followed for each individual student and helps them feel confident that they are proceeding with consistency and are respecting students’ rights.
- Helps parents find answers quickly—day or night. They no longer have to wait to talk to an advocate or read documents to determine what procedures the school must follow and what options and rights they and their children have under various circumstances.
Learn more at www.PACER.org/parent/news.asp.
ALLIANCE co-director receives national award
Sharman Davis Barrett of PACER Center recently received a prestigious national award from the national Consortium for Appropriate Dispute Resolution in Special Education (CADRE) for her work on behalf of persons with disabilities. CADRE, based in Oregon, gives the Keys to Access Award to an individual or entity that has supported special education programs, early intervention services, and persons with disabilities.
Barrett is the co-director of the Technical Assistance ALLIANCE for Parent Centers. PACER Center is the National Center for Parent Technical Assistance. The Keys to Access Award was presented to Barrett at the Technical Assistance ALLIANCE for Parent Centers national conference in Washington, D.C. in January 2008.
Marshall Peter, Director of CADRE, praised Barrett for her work. “In her capacity at PACER, and then as co-director of the ALLIANCE where she has coordinated multicultural outreach, Sharman has repeatedly demonstrated her absolute commitment to the well-being of underserved children and their families,” he said.
“CADRE particularly wants to acknowledge Sharman’s leadership in making dispute resolution processes and their effective utilization more easily understood by parents, especially her co-authorship of parent guides and a video related to mediation, IEP facilitation, and resolution meetings,” Peter added.
“She isn’t just a soldier for social justice,” said Phil Moses, Assistant Director of CADRE. “Sharman’s a captain, an admiral, a commander-in-chief for social justice. There isn’t any individual who has done more to encourage the use of collaborative approaches for resolving special education disputes about children who live in underserved communities than Sharman.”
“We’re delighted that Sharman’s work has been recognized,” said Paula F. Goldberg, PACER Center’s executive director. “In 21 years of working at PACER, Sharman has made a difference in the lives of many parents and children, in Minnesota and nationwide.”
Barrett has advised CADRE as a member of its National Advisory Board. CADRE works to increase the nation’s capacity to effectively resolve special education disputes, reducing the use of expensive adversarial processes.
Calling all teens: Send in stories on bullying for new Web site
Bullying happens to many teens–with or without disabilities–but it’s never okay. PACER Center is developing a new national bullying prevention Web site to help teens figure out how to deal with the issue. Cool videos, fun interactive information, and real-life stories will give middle-school and high-school students practical ways to respond when they see bullying or it happens to them. PACER is looking for teens throughout the United States willing to share their stories about bullying. How did it feel to be bullied—or to see it happen? What creative responses did you try to handle the situation? What worked and what didn’t? Were your parents or other adults helpful? What great bullying prevention ideas do you have? If you could tell the world what you think about bullying, what would you say? Write it, draw it, videotape it. Tell us a story in your own way and send it to PACER, along with your phone number and your parent’s written permission (download a form at
www.pacer.org/bullying/mhs/index.asp).
Send your entry to bullying411@PACER.org or mail it to: Bullying Prevention Project, PACER Center, 8161 Normandale Blvd. Bloomington, MN 55437.
Your story can be anonymous, and it may be included on the new site when it launches this summer.
Through the eyes of teens
Youth Board educates schools, community on mental health disabilities
By Michelle Ulfers
What’s it like to be a teenager with mental health disabilities? What helps youth succeed in school and in the community, and what hinders that success? The members of PACER Center’s Youth Advisory Board on Mental Health would like to tell you about it.
By sharing information about teens and mental health, as well as their own personal stories, six middle-school and high-school students hope to lessen the stigma for youth with mental health disabilities.
The Youth Advisory Board started six years ago as a way for youth with mental health needs to develop leadership skills, learn self-advocacy strategies, and develop a message of hope and support for other youth with mental health challenges.
The six teens meet regularly to create a youth leadership presence in Minnesota, share ideas on existing services, and point to areas for needed improvement. The board tries to live its motto: “Youth having a voice and making a difference. Nothing about us, without us!”
“I think it’s important that the youth board speaks in the community so other people can learn how to help support teens with mental health issues,” says 16-year-old Jason, a board member.
By sharing their voices and stories, the teens hope to inform the public and eliminate the stigma that having a mental health diagnosis often creates.
Public Presentations
The Youth Advisory Board has created a presentation for parents, professionals, and others who work with youth with mental health needs. During the presentation, the teens talk about their individual journeys through the mental health care system, sharing what has worked for them and what has not worked.
They have spoken at the Minnesota Association of Children’s Mental Health Conference, the Technical Assistance ALLIANCE for Parent Centers national conference in Washington, D.C., the Minnesota School Social Workers Conference and the Barbara Schneider Foundation Conference. They have also given in-services for school districts, private schools, and public agencies. Over the past six years, the Youth Board’s message has reached hundreds of providers, parents, and other youth through this activity. Anyone interested in scheduling a presentation may call PACER.
Participation
Youth Board members attend monthly meetings to support each other and discuss goals. Meetings are run using Robert’s Rules of Order. There are four officer positions: president, vice president, secretary, and treasurer, which are voted on by the members. The other positions are bylaw writer, Web site coordinator, and activity coordinator. All members commit to attending every meeting and to serving as a role model when participating in Youth Board events.
Community Presence
The Youth Board actively participates in community activities with the goal of decreasing stigma and creating a positive youth presence. Past events included holding a Sleepout for World Mental Health, working with an artist to create a three-part canvas depicting a youth’s journey through the world of mental health, and volunteering at a Lions Club pancake breakfast.
Future plans
Future goals for the board include the creation of a Web site and a brochure to increase awareness of how mental health issues impact youth, as well as developing informational handouts related to youth and mental health issues.
The Youth Advisory Board currently has six members, and is hoping to expand to eight members. Anyone interested in interviewing to become a youth board member must:
- be a student in 6th grade or above, but not graduated
- have a diagnosis of a mental, emotional, or behavioral issue that impacts their education. It is not required that a member be on a 504 plan or in special education
- be committed to participating regularly in meetings, events, and other activities as determined by the Youth Board.
For more information, call Michelle Ulfers, 952-838-9000.
Youth Board members share their stories*
Anna: I am 13 and in seventh grade. I have anxiety, depression, and scoliosis. In the past, when I was pushed to get past my feelings and anxiety, it made it worse. My 504 Plan allows me to take a break or to talk to my support person.
Dan: I am 13 and in the eighth grade. I have anxiety, depression, Tourette’s, and ADHD. Last year was very difficult for me academically, emotionally, and socially. I didn’t feel respected in my school and would act out and get in trouble. This year I’m in a different school with a new IEP. The atmosphere is one of mutual respect, and I’m doing really well.
Justin: I am 17 and in 11th grade at a performing arts school. I have ADHD. I have been successful at my high school because I can advocate for myself, and the teachers are able to help me because they understand that I am trying hard. I work hard at helping people understand that kids with ADHD need to be understood. We have a lot of gifts to share with the world.
Eric: I am 17 and am currently looking forward to working on and receiving my GED. I have ADHD, post traumatic stress disorder, depression, and anxiety. I have struggled in school because of my mental health. I am ready to move forward in my life and share my skills in the adult world.
Katie: I am 18 and I am a senior in high school. I have ADD and anxiety. My struggles with mental health have included residential treatment and day treatment. I’m healthier now and my IEP helps me to manage attending regular high school. I am doing well because I didn’t give up on myself and have the support of others.
Jason: I am 16 and in 11th grade. I attend regular high school and take a class at a vocational college. I have obsessive compulsive disorder, anxiety and depression. My IEP case manager, my family, my friends, and the Youth Board and have provided me with tremendous support. I am learning to take responsibility for my feelings and actions. I feel successful in school.
*Names have been changed to protect privacy.
Tips from teens
For parents: How to encourage a teenager to talk to you about their mental health.
Please stay calm. I may be feeling emotions I can't control, and your ability to stay calm helps me keep calm.
For teachers, principals, and school support staff from students with mental health and behavioral disabilities.
Please treat me with respect. Your encouragement helps me feel better about myself. When I lack self-esteem, it is easy for me to believe others' negative remarks about me–even if they are untrue.
For teens: Use your IEP meetings to learn how to advocate for yourself.
Self-advocacy is a key step in becoming an adult. It means looking out for yourself, telling people what you need, and knowing how to take responsibility.
Five Facts
- One in five children has experience with a mental health issue
- There is relief from symptoms through treatment.
- Approximately two-thirds of all young people with mental health problems are not receiving the treatment they need.
- Seeking help is a positive step. Young people shouldn’t let stigma keep them from getting help.
- Youth with mental health issues are contributing members of society and deserve to be understood.
Career search: start charting a path for youth now
By Judy Moses
If your child is in middle school or just beginning high school, it may seem like graduation and the transition to adult life are far into the future. Yet it’s during these years that teens can explore interests that may lead to that first full-time job or attendance at a technical school, community college, or university.
By exploring interests now through volunteer work, hobbies, or internships, you can better help your son or daughter decide which career path to take upon graduation.
As a parent, you may have some good ideas about what your son or daughter would like to do after graduation. Talk with your teenager about his or her special interests or passions. These areas may point to potential career paths.
Most youth under the age of 20 are not developmentally ready to think very far into the future. Some will become stressed, angry, or withdrawn if pushed too directly to think about choices outside of their experience.
Yet research shows that if youth can see their dreams as possible paths toward employment, they are more likely to reach their career goals. Early, ongoing career exploration can help you raise the topic at times when your teenager is most receptive.
Consider these Career Exploration Ideas
Your son or daughter may want to consider participating in formal programs such as:
- apprenticeships
- job shadowing
- community- or faith-based service projects
- programs open to high school students at a community college, university, or technical school
- specialized summer camps
Career exploration also can include informal experiences such as:
- visiting technical schools
- starting a lawn care, dog-walking, or other business
- touring a manufacturing company
- volunteering
Use the Individualized Education Program (IEP) to Prepare for a Career
The IEP should help your son or daughter prepare for future goals. Besides specifying high school courses that will provide a strong foundation, the IEP could include activities such as:
- An evening or weekend course at a community college or an adult continuing education program. Attending such a class might help your son or daughter try out transportation options, experience a new learning environment, use high school accommodations in a new setting, or explore what future careers are really like.
- Internships, part-time jobs, or volunteer and community service opportunities. These activities can provide hands-on experience to help define your youth’s career choice.
- Pre-college programs specifically designed for high school students the summer before or after their senior year. The IEP team may be able to arrange financial payment of these exploratory courses if they support career goals.
Translating your young adult’s strengths, interests, and dreams into career goals takes time and effort.
By taking advantage of some real-life work experiences, your network of friends and associates, and some family-supported career exploration, your teenager may discover options to add to those developed by the IEP team.
These first exploratory steps can be expanded upon and enhanced as your young adult continues on his or her career path.
Transition and Career Resources
PACER Center's Project C3 (Connecting Youth to Communities and Careers) offers an interactive resource map to connect youth with Minnesota resources for education, student loans, apprenticeships, and employment options. See:
www.c3online.org
The U.S. Department of Agriculture Farm Service Agency provides agriculture small business loans to rural youth. Search for rural youth loans at:
www.fsa.usda.gov/FSA
WorkForce Centers provide job training, education, and employment services at a single neighborhood location. See:
www.deed.state.mn.us/rehab/rehab.htm or call 651-296-5616; 888-GET-JOBS (toll free); 651-296-3900 (TTY); 800-657-3973 (TTY).
Rehabilitation Services are housed in WorkForce Centers and can help people with disabilities achieve their employment and independent living goals. Career training at technical schools, community colleges, and universities can be partially paid for through Rehabilitation Services. See:
www.mnwfc.org.
PACER offers articles on the Americans with Disabilities Act and strategies to help youth prepare for employment and adulthood online at
www.PACER.org/tatra/knowledgecenter.asp.
Hobbies, volunteer jobs can point the way
Volunteer work uncovers skills
Ariana has a learning disability and loves helping her father in his workshop. She built bookcases for her bedroom and helped construct a bus stop shelter at the end of her driveway.
When her parents heard about a summer volunteer program to help construct homes for low-income families, they signed up together. With her parents’ supervision, Ariana helped attach decking, frame walls, put up wall board, and follow the progress on the blueprints.
When she returned to school that fall, she signed up for a computer-aided design class and discovered she was good at spatial concepts and mechanical rendering of three-dimensional products.
With help from her parents and guidance counselors, Ariana is now researching technical schools. She is eager to find a career that matches her understanding of construction principles and spatial design.
Hobby becomes small business
Song, who has cognitive disabilities, always enjoyed visiting her aunt on the family farm. The summer she was 15, she asked about raising chickens like her older cousins did. Her parents helped her order 500 chicks, and her cousins showed her how to set up a heated area for them in her aunt’s barn. Song fed and watered the chickens every day. Her aunt helped her track the costs of feed and the death loss. The whole family participated in processing the 470 chickens. After all the costs were subtracted, Song identified how much profit she had made from selling each chicken and had a list of customers for next summer. Song learned many “soft” skills that summer: how to work consistently, how to pay attention to details, how to welcome customers, give change, and encourage a customer to purchase additional items. The next year, she was able to expand her small business through a $5,000 Farm Service Agency loan designed for youth under the age of 18.
Part-time job reveals career path
Simcha’s has a cognitive disability, and his IEP goal was to find a part-time summer job. His IEP team noticed he was good at paying attention to details and keeping his work area orderly and clean, so they recommended that he look for a janitorial position. Simcha applied for a cleaning job at the machine shop where his father worked and was hired. He followed directions well and enjoyed being around the machines. When a worker called in sick, his supervisor let Simcha try machining dental drills. He was soon given full-time summer employment. That fall, the career goals in his IEP were changed from janitor to machining assistant.
Facing the Future: finding accommodations on the job, at college
A young man with Asperger’s syndrome was fired after two weeks on the job. When he wasn’t receiving direction at the grocery store where he worked, he didn’t know what to do. This teenager hadn’t told his employer about his disability and had no accommodations.
As this story illustrates, entering the world of work and postsecondary education brings new challenges for youth with disabilities.
Will they tell their employer or school about their disability or will they keep that information private and attempt to structure accommodations for themselves? If they do disclose their disability, how do they find accommodations that will help them, and how do they approach employers or postsecondary teachers with this information?
As teenagers transition to adulthood, these questions come to the forefront. Services provided under the Individuals with Disabilities Education Act (IDEA) come to an end, and young adults need to find new ways to receive accommodations.
Although accommodation rights are provided to adults with disabilities through the Americans with Disabilities Act (ADA) and the Rehabilitation Act of 1973, services are not provided automatically.
To receive services, adults must disclose their disabilities to schools or employers, request accommodations, and provide required documentation showing that the accommodations are necessary because of a disability.
“Many employers are open to accommodations,” said Sean Roy, projects director for transition and workforce
development at PACER. What employers want most, he said, are good soft skills. “They want an employee with ethics, responsibility, good interpersonal communications, and a professional appearance.”
Following are ways parents can help young adults understand, manage, and explain their disability to others and receive needed accommodations.
Help youth be knowledgeable about their disability
Youth should know:
- General and specific information about their disability. Naming the disability can increase confidence. Provide youth with factual information that shows both the strengths and challenges of their disability.
- Types of accommodations that have worked in the past. Knowing which “tools” from the “toolbox” have worked and which haven’t will help young adults identify the types of accommodations they may find useful in the future. Teaching youth how to choose familiar “tools” for future "projects" provides an important life skill.
- Types of accommodations that may help in adult roles. Help youth think about which accommodations might be modified for new situations such as postsecondary education or on the job. Discuss which “tools in the toolbox” might still be helpful and what new “tools” might be needed.
Teach how and when to disclose information
Disclosing means intentionally releasing information for a specific reason. It does not mean telling everything about a disability, but sharing only information that will result in accommodations.
Role playing may help youth decide whether and how to disclose. Practice asking for accommodations in different situations, and coach youth in who to tell, how much to say, and what to keep private.
Let your young adult know that accommodations may be requested at different times. For example:
- If an accommodation is needed to participate in a job interview, it will need to be disclosed prior to the meeting. If an accommodation is not needed at that point, it’s not necessary to mention the disability. In fact, early disclosure may result in being screened out by the employer. Although illegal, such discrimination does happen and can be very difficult to prove.
- Once hired, youth should request accommodations before beginning the job. If they don’t, and consequently do poorly or get fired, the protections of the ADA and Rehabilitation Act don’t apply. Remember, employers and postsecondary schools are not required to ask whether disability-related accommodations are needed. In fact, in most cases it is illegal to do so.
- For the same reason, if new accommodations become necessary, your young adult should disclose the disability to the appropriate person at that time in order to be protected by the ADA and Rehabilitation Act.
Keep in mind that under the ADA, employees are entitled to an accommodation only if it is needed because of a disability. An employer can ask for medical documentation of the need for accommodation.
Remember, too, an employer can ask employees about their ability to perform a job but cannot ask directly if they have a disability. For example, a boss could say, “I see you use a wheelchair. How will you move our manufactured parts from your workstation to quality control?” Your young adult could reply, “I’ve used an attachable tray to move items at my school-based employment. It worked really well.”
Teach ways to meet needs without disclosing.
Some youth would prefer to be fired from a job or expelled from college than disclose they have a disability. To a parent, this attitude can be difficult to accept, but ultimately it’s your son or daughter’s choice.
Even without disclosing, there are still strategies youth can learn to succeed on the job or at school. For example, a young man in a nursing program compensated for the effects of his antidepressant medication by taking afternoon, evening, and Saturday classes. His depression, an ongoing issue, would sometimes incapacitate him for weeks at a time. When he accepted a hospital job on the third shift, he was reluctant to disclose his disability. He found night shifts to work well with his medication schedule and saved up vacation time for February, when he typically had the most difficulty. His overall attendance record was comparable to that of his co-workers and did not cause a problem for his supervisor.
What is an accommodation?
Accommodations can include many things, including:
- additional time to learn new responsibilities
- alarm watch or beeper
- checklists, pictures, symbols, or diagrams
- division of long assignments into smaller tasks
- ergonomic tools, handle build-ups, or chairs
- extra breaks for stress management
- height-adjustable table or desk
- magnification of computer screens
- personal attendant
- reduction of workspace distractions
For more ideas, visit www.JAN.wvu.edu/media/ideas.html. The Job Accommodation Network (JAN) offers a list of accommodations sorted by disability. Phone: 800 -JAN-7234 (toll free). JAN consultants provide guidance regarding the ADA’s definition of reasonable accommodation to individuals with disabilities, their family members, employers, and professionals.
Project C3 provides transition advice, ideas
As a parent, it can be easy to feel overwhelmed when faced with transition issues.
There’s no need for parents to go it alone, however. They can turn to PACER and Project C3 (Connecting Youth to Communities and Careers) for advice and ideas.
“When youth make the transition from school to community, they often can benefit from additional supports found in the community,” says Sean Roy, projects director for transition and workforce partnerships at PACER. “Project C3 is a unique and valuable resource to help youth, parents, and professionals identify those resources.”
Project C3 offers an online resource map: a statewide database of organizations that provide services to youth, including those with disabilities. The map allows anyone to search for resources in employment, transportation, housing, education, health, and recreation assistance.
A joint venture between PACER Center, Pathways to Employment, the Minnesota Department of Education, and the Minnesota Department of Employment and Economic Development, Project C3 improves the employment and postsecondary outcomes of youth moving from school to their communities. It achieves this goal through professional collaborations, resource mapping, advocacy and training for youth and parents, and strategies that create system change for at-risk youth.
If parents have questions about employment resources and practices, or how to work with an educational organization, they can call PACER and speak with Roy or Shauna McDonald of C3. “We can answer questions on how to access services as your teenager transitions to adult life,” Roy says.
Learn more at www.c3online.org or call PACER at 952-838-9000.
New "how-to" book offers tips to parents of children with autism spectrum disorders
By Julie Holmquist
Brushing teeth or taking a trip to the mall can be traumatic events for a child with autism spectrum disorder.
Parents looking for ways to avoid that trauma now have a new resource. “Dr. Thompson’s Straight Talk on Autism,” a new book by Travis Thompson, Ph.D., offers ready-to-use tips and practical strategies to help parents and their children meet the challenges presented by autism. The book has already received praises from parents of children with autism and professionals alike.
“I truly wish every parent and every professional in the field could have a copy of this book for the sake of all the children with ASDs,” says Sue Pratt, former director of the Parent Training and Information Center in Michigan, a past president of the National Autism Society, and a parent of a son with autism.
“Dr. Thompson’s wisdom and its practical application are priceless to families who have children with autism spectrum disorders (ASDs),” says Paula Goldberg, executive director of PACER Center. “This easy-to-read, family-friendly book will be very beneficial to parents and professionals.”
The book follows “Making Sense of Autism,” also written by Thompson, an award-winning autism expert, a psychologist who is professor of pediatrics at the University of Minnesota School of Medicine, and grandfather of a child with autism.
“The previous book was about making sure people understand autism,” Thompson says. “Even before it was widely disseminated, people were saying, ‘This is interesting, but what am I supposed to do, specifically?’”
Thompson says he wrote “Straight Talk on Autism” to answer that question. The new book provides detailed methods for:
- improving communication, relationships, and social skills
- dealing with the most common causes of behavioral challenges, and
- promoting participation in recreation and leisure activities.
In addition to other helpful hints, the book offers step-by-step techniques for teaching daily living skills at mealtime, bedtime, and bath time. “It’s very frustrating to have a child who is finicky about food or who won’t brush his teeth,” Thompson says. “The book teaches how to go about desensitizing children to those experiences.”
Thompson based the interventions offered in the book on the latest research and his extensive clinical experience. He says he also learned from living with a grandson who has autism. “To have a child in your home 24/7 is different than seeing a child once a week at the office,” he says.
Along with other interventions, the book outlines proven methods for developing speech, reducing obsessions and compulsions, coping with specific fears, preventing self-injurious behavior, and teaching children to identify how they’re feeling emotionally.
Thompson’s third book in this series will be published in 2009 and will deal specifically with how to prevent meltdowns and tantrums.
“The tendency is to think that the child is having a tantrum willingly. I would say that is quite rare,” Thompson says. “Most of the time, the child is afraid or doesn’t know how to do what you want them to do, or is afraid of bad consequences. You have to figure out why he’s doing it and teach skills so he doesn’t need to do it anymore.”
For more information on Thompson’s books, visit www.PACER.org.
Benefit '08
PACER Center's 26th Annual Benefit, April 26, 2008 - A supplement to PACESETTER
A record number of people packed the Minneapolis Convention Center auditorium for PACER’s 26th Annual Benefit on April 26.
The sell-out crowd of 3,400 danced in the aisles to the energetic performance of Earth, Wind & Fire, following the Benefit’s silent and live auctions.
“It’s fantastic that this year’s Benefit set a record in attendance. There are so many generous people in this area,” said Paula F. Goldberg, PACER’s executive director. “We’re so thankful for the hard-working Benefit committee, the support of PACER’s many dedicated friends, and the commitment of the community to help children with disabilities.”
“PACER’s Benefit has become successful not only because of ticket buyers, but because of our fantastic donors,” said Mary Schrock, PACER’s chief operating and development officer. “We have many individuals and businesses that contribute to the silent and live auctions. Funding also comes from PACER’s corporate sponsors. PACER could not provide all the services at no charge without this community support.”
Successful Benefit assures no-cost services for Minnesota families
PACER unveils international Web site
By Julie Holmquist
PACER’s new International Web site, recently launched in 2008, is a global extension of PACER’s “parents helping parents” philosophy.
The Web site (www.PACERinternational.org) provides information on the history of disability rights in the United States, as well as a long list of links to resources and organizations in the United States and other countries that focus on helping children with disabilities.
The idea for the site developed from PACER’s collaboration with professionals and government officials in India. This special connection with India began in 2005 when PACER Executive Director Paula Goldberg met with government officials in India and toured programs there for children with disabilities. The Web site was originally conceived as a joint venture between the National Trust of India and PACER Center.
Since 2005, PACER has cosponsored India’s first national conference on technology for children and adults with disabilities, along with India’s National Institute for the Mentally Handicapped. PACER has also supported the creation of a new center on assistive technology for children and adults in Bangalore, India, which is scheduled to open this fall.
Because of PACER’s close ties with India, the site has a wealth of information about disability organizations and laws in that country. Viveca Braganza and Dr. Geetha Mukundan, two professionals from India who studied in the U.S. and collaborated with PACER, gathered many of those resources.
In the future, PACER hopes to expand the amount of resources on the Web site specific to other countries.
“The Web site is meant to provide an opportunity for families worldwide to learn about special education issues,” says Shauna McDonald, a PACER staff member who worked on the project. “We’d like it to be a forum for discussion and ideas for parents in other countries.”
Interest in PACER from international visitors also prompted PACER to develop the Web site. “We’ve hosted many international guests at PACER who are eager to develop additional resources in their countries for children with disabilities,” says Goldberg. “The Web site is another way to collaborate and work toward the goal of improving the lives of children with disabilities around the world.”
McDonald says PACER is eager to share ideas with other countries. To that end, a guest book is also included on the Web site, so visitors can sign in and comment.
“Using the Web site, we can provide information on what the U.S. has done concerning disability rights,” McDonald says. “But we don’t have all the answers.
“We also hope to learn as people from other countries contact us,” she says. “We learn so much through exchanges. The people who visit PACER are amazing. They are visionaries for their countries."
Change for Children
Chloe Culler, Girl Scout Troop 50839, and 10 other fifth-grade girls from the troop recently donated to Change for Children. Some of the girls have a classmate who has Down syndrome and saw the PACER Center’s COUNT ME IN® puppet show when they were kindergartners. When they were looking for a donation project for their troop, they thought of PACER.
Fun Times
Group's popularity leads to creation of other clubs
By Julie Holmquist
All teens want to hang out with their peers and have fun. For teens with disabilities, finding those social hang-outs can be a challenge. Communication difficulties, mobility issues, a lack of inclusive school activities, or other factors can limit their social world.
Fun Times, a volunteer social program, seeks to widen that social arena. Through group activities, it connects high school teens and young adults with and without disabilities. Started in 2004 with a core group, the program is expanding in other areas.
The teens spend time bowling, going to the mall, or eating pizza – just like other kids. In February, the core Fun Times group gathered at a Timberwolves game. Jennifer Bocklund, who has autism spectrum disorder, was just one of the many teens there. “This is the best thing of my life,” she says about Fun Times. “I get to hang out with people, and it doesn’t matter if you have disabilities or not.”
Fun Times “is a big, big deal,” says Mara Bennett, who has Williams syndrome, a developmental disability. “It means everything. I love the atmosphere. I love the people. It’s really fun.”
Mara’s brother, Win, came up with the Fun Times concept after watching his sister’s social world grow smaller as she entered her teen years.
With the support of PACER and many of his friends, Win and teens from around the metro area began “hanging out” as the PACER core Fun Times group. Now that Win is away at college, his brother Frankie is continuing the leadership of Fun Times. The group “breaks down barriers” between teens who have disabilities and those who don’t, Frankie says.
New local clubs
The success of the core group is now creating a desire for additional Fun Times clubs. The creation of local Fun Times groups – organized by students, supported by parents, and advised by school personnel – is the vision of the core program, says Susan Shimota, PACER Fun Times coordinator. “Our dream is that communities and school districts would launch their own Fun Times clubs, and schools play such an important part in the process.”
That dream is becoming a reality. PACER has helped separate groups organize in Wayzata, Northfield, and Chaska. The Chaska Fun Times pilot, which has operated separately from the Chaska High School for four years, just became an official high school club. Fun Times has been added to the long list of other clubs at the school and will have a monthly planning meeting during the school day, just like the other clubs.
“We try to offer something for everybody,” says Erica Bossert, Chaska High School Fun Times advisor and special education teacher. “I think it creates an opportunity for all students to be involved, particularly students with disabilities. They don’t have a lot of opportunity to do things with their peers, even if it’s just going to a basketball game.”
Sammy Sites and Alyssa Gammelgaard, seniors at Chaska High School, couldn’t be happier about the club’s official status. Both girls have been involved as volunteers with the pilot Fun Times group and want to see the Chaska club become fully integrated at their school.
Sammy and Alyssa joined Fun Times after Win and Mara Bennett, along with Susan Shimota of PACER, made a presentation at Chaska High School four years ago.
“My initial thought was, ‘Wow! The lack of integration is a real problem in our school,’ ” Sammy says. So she did something about it: She invited teens with disabilities to hang out with her and her friends, and the pilot Chaska group was born. Over the years, Sammy has enjoyed Fun Times Halloween parties, barbeques, and other events, and learned along the way. “Every person is different,” she says. “You can’t categorize individuals. People with disabilities are just people with different attributes.”
Alyssa says teens without disabilities often have stereotypes of those who do. “People don’t understand what a disability is, what they can and can’t do. Maybe they’re afraid of offending someone, or maybe doing something wrong.”
Even though taking part in the group took her out of her comfort zone, Alyssa says she had great times that kept her coming back. “It’s been a meaningful experience and can be so fulfilling,” she says. “It’s nice to get to know different kids. Kids with disabilities are just like everyone else – they want to have fun, too.”
Pat Bigouette, a Chaska Fun Times volunteer who’s busy on the track team and in many other activities, has also played an important role in the local club: It was his idea to seek official high school status.
Cathy Sullivan, a parent leader for the Chaska club, says the official status is important. “This is truly integration,” she says. “It gives kids with special needs an opportunity that wouldn’t be there without it.”
Sullivan’s son, Alex, a senior at Chaska High School who has Down syndrome, has been socially isolated most of his life. Because his prior school district didn’t offer any social activities for students with special needs, and because he couldn’t go outside without supervision, he often sat at home and watched TV.
“I remember one day watching him stare out the window,” Sullivan recalls. “He looked so lonely. It about ripped my heart out.”
Fun Times changed that scenario. “Now he is Mister Social,” says his mom.
For more information on developing Fun Times clubs in your school or community, visit
www.PACER.org/funtimes/index.asp or call 952-838-9000.
Paul Adelman Tech Connect helps community centers change lives
By Julie Holmquist
A 7-year-old girl with ADHD knows that small changes can make a big difference. A simple assistive device called a “Disc-o-sit” helped her concentrate so she could improve her reading skills, thanks to PACER’s Paul Adelman Tech Connect Initiative (Tech Connect).
Now in its third year, Tech Connect, a project of PACER’s Simon Technology Center, brings the benefit of assistive technology to community centers throughout the Twin Cities.
Tech Connect offers training, equipment, and advice on accessibility to community-based organizations serving low-income and underserved populations.
One organization served by Tech Connect was a St. Paul YMCA learning program attended by the girl with ADHD. She was struggling; even one-on-one tutors couldn’t help her. “She would roll around on the floor and could not be read to because of her distractibility,” a YMCA staff member recalls.
That changed after they discovered the Disc-o-sit through Tech Connect. “The tutor was amazed at the change in this young lady’s ability to sit and listen,” the staff member reports. Because she was able to sit on this special cushion that wobbles and helps her concentrate, the young girl was able to make reading progress.
The Disc-o-sit is just one example of the many assistive devices that open doors for people with disabilities. Track balls, large print keyboards, software technology that reads text, adjustable height tables and other devices can also create educational opportunities.
Through Tech Connect, community organizations are able to offer these assistive devices to the public and provide greater accessibility in their computer labs and learning centers.
“A child who can move only one muscle can operate a computer if given the appropriate assistive device,” says Paula Goldberg, PACER’s executive director. “This in turn opens the world of the Internet, e-mail communication, and educational software, and can lead to success in education and employment.”
Organizations may apply for the four Tech Connect grants awarded each year. Once an organization is chosen, staff from PACER Center’s Simon Technology Center assess the specific technology needs of the site. Several training sessions and a free membership to the STC Library are included in the yearlong program. STC staff members order equipment for each site and provide training in how to use the technology.
“It’s exciting to introduce other organizations to technology that can make such a positive impact on the people they serve,” says Annette Cerreta, who coordinates the Paul Adelman Tech Connect Initiative. “It’s wonderful to hear the success stories.”
The program has made a difference in the lives of many Sabathani Community Center students in Minneapolis. One student, paralyzed in a hand and lower arm, learned how to use an electronic stylus and writing tablet to enter text on the computer. A Sabathani staff member says the student gained confidence and was able to complete a monthlong office skills course using the device.
Tech Connect helped “tremendously,” says Veronica Chatterton, adult basic education director at Sabathani. Sabathani specializes in helping people who have difficulties in a traditional classroom, she says, so using technology makes learning easier for these students.
The YMCA of St. Paul also notes success. Tech Connect has allowed its staff to more closely meet the needs of the youth served in its programs.
The additional software has increased our options for assisting our students with learning disabilities and supporting those students who struggle with learning overall,” says a YMCA staff member.
Evaluations show that the goals of Tech Connect are being met: the program is creating opportunities for children, youth and adults with disabilities from low-income and underserved populations by increasing technology skills, access to technology training, and time at computer labs.
The four organizations taking part in Tech Connect this year are: Metropolitan Center for Independent Living, Midway Training Services, St. Paul Neighborhood Network, which are all located in St. Paul; and Intemedia Arts in Minneapolis.
PACER thanks the Carolyn Foundation, Travelers Foundation, and the Paul Adelman Fund for funding Tech Connect.
Resolve school differences with effective communication skills
By Carolyn Anderson
Disagreements and conflict within special education are normal and inevitable—there will be conflicting interests, perspectives, positions, and views of the child. Most parents want what is “best” for their children while the school is required to provide “appropriate services.” In addition, each person is a complex human being, and each school is part of a complex government agency. Effective communication can help bridge these gaps for the benefit of the child with a disability.
Parents are a child’s best and longest lasting advocates. Parents with good communication skills can be even more effective advocates for their children.
Parents and school staff do not need to be friends, but it pays to build an effective working relationship. Unless a family moves or someone changes his or her job, parents and educators may be working with many of the same people for a number of years.
Parental approaches, attitudes, and responses are choices. For example, if there is a situation where parents could “take offense,” they can choose to not be offended. While people can’t control all the situations of life, they can control how they respond to those situations.
Communication is like a mobile—when one part moves, then the whole mobile must move. Likewise, when parents’ approaches, attitudes, or responses change, the result may be a different and better outcome for their child.
Parents sometimes feel they are too shy, passive, aggressive, busy, anxious, uninformed, overly emotional, unorganized, intimidated, overwhelmed, distrustful, angry, protective, etc. Each person has a right to their feelings. But parents don’t have to let their feelings control their behavior. They should ask these questions:
- “Will my feelings, thoughts, opinions, and the way I express them help my child receive what he or she needs?
- Am I being effective?
- Does this serve my cause or hurt it?
- If I put my child first and in the center of what I do, will I still want to behave like this?”
First, gather information. Parents should learn all they can about special education and their child’s disability. The more parents know, the more they can communicate as an equal partner. PACER Center and disability groups can help build a parent’s knowledge base.
Second, think about communication skills. Call PACER to request a copy of “Working Together: A Parent’s Guide to Parent and Professional Communication Within Special Education.” This booklet contains suggestions and techniques to help improve communication with school staff. Parents might already use many of these suggestions and techniques, but others may be new ideas to consider. Parents can choose to do the best they can today, and then learn more skills to do an even better job tomorrow.
Making Connections: PIRC parent centers help build parent, school bonds
MINNESOTA PARENT CENTER
Minnesota PIRC
By Deborah Ottman
Parents and school professionals want the best for children, but they sometimes need fresh ideas for building strong home and school connections that will help children learn.
That’s where Parent Information Resource Centers (PIRCs) can help. A nationwide network of PIRCs focuses on improving academic success for all students – with and without disabilities – by strengthening family involvement in education. Minnesota’s PIRC is the Minnesota Parent Center, a PACER project.
How does a PIRC build stronger school and home connections? PIRCs provide information and resources to parents and schools in a multitude of ways. For example:
- One mother called the Minnesota Parent Center to ask a staff member how she could improve communication with school to make sure her child stayed on task. She had no Internet service at home, but was accustomed to visiting a local library. The staff member suggested setting up an e-mail account at the library so she could exchange messages with the teacher.
- A Spanish-speaking paraprofessional sent flyers home from school written in Spanish, but received little response from families. After attending a Minnesota Parent Center workshop on cross-cultural understanding, the paraprofessional suggested that her school set up a phone tree. The phone tree would allow Spanish-speaking parents to relay school information to each other. The school’s response rate increased dramatically with this alternative system.
Funded by the U.S. Department of Education's Office of Innovation and Improvement, PIRCs generally focus on projects serving parents of low-income, minority and limited English proficient children in kindergarten through secondary schools. There are 62 PIRCs, with one in every state, the District of Columbia and most U.S. territories. To locate a center, visit the National PIRC Coordination Center's Web site at www.nationalpirc.org for the directory. Each PIRC may offer different programs.
Helping families
The Minnesota Parent Center provides free services. It helps parents of school children understand their rights and responsibilities, as well as services for which their children may be eligible under the guidelines of the No Child Left Behind Act.
The Minnesota Parent Center also offers various workshops to help families become stronger educational partners, including:
- Schools 101: What Schools Want You to Know. This workshop helps parents understand how the school system works. Parent-teacher conferences, report cards, communicating with teachers and the organization of a school and school district are some of the topics covered. It is also helpful to families of different cultures and languages, who are new to public schools within the United States.
- Parental Involvement for Student Success provides ideas for being involved in your child’s education during the elementary, middle-school, and high-school years.
- Using the Internet gives information about accessing school and report card information online, even if families have no Internet service at home.
Parents can request printed resources or find Minnesota Parent Center information on PACER’s Web site, www.PACER.org/mpc/index.asp, or call 952-838-9000 and request one-on-one support from staff members.
Helping schools
Through in-services and trainings, the Minnesota Parent Center also supports local and state education agencies and school staff wishing to strengthen family involvement within public schools. In Willmar, Minn., a family liaison working within the district says a Minnesota Parent Center training helped her focus on keeping the district “family-friendly.”
The Minnesota Parent Center also has language and multicultural advocates who work with both parents and staff, helping them to understand one another and to grow strong collaborations which benefit students. The presenters at a Minnesota Parent Center seminar on cross-cultural understanding had “first-hand knowledge of what our families need,” said one school social worker. “The issues and obstacles families face can be so immense and overwhelming,” she added. “Schools need a better understanding of these issues.” The staff at the Minnesota Parent Center can play a key role in helping that happen.
The Minnesota Parent Center is developing a family curriculum that schools can use to supplement their work with families. Topics will cover:
- How to communicate with your child’s teacher ]
- How expectations shape behavior
- How to help your child learn at home
- Creating school-family-community partnerships
- Motivating, building, and informing: how to tap into your child’s personal learning style
The MN PIRC shares research-based information, best-practice strategies, and offers resource materials, which support family involvement in order to encourage school success.
Minnesota’s PIRC, the Minnesota Parent Center, has scheduled a Statewide Parent Involvement Day for September 2008 and state conference for October 2008.
For more information on these events, or to schedule workshops, call PACER at 952-838-9000 and ask for the Minnesota Parent Center.
Multicultural brochures help schools publicize special education services
PACER Center has published a series of brochures and accompanying handouts to help school districts tell families from diverse cultures about early intervention and early childhood special education services. A grant from the Minnesota Department of Education funded the project.
The materials are in Hmong, Somali, Spanish, and Russian. English versions are directed to American Indian and African American parents.
The easy-to-understand brochure outlines the steps parents can take to seek services for their children. The one-page handouts provide more detailed information, including information about developmental milestones.
To assist professionals working in diverse communities, English versions accompany each order of translated publications. There is space for school districts to affix a label providing their local contact information. To order the materials, call PACER at 952-838-9000.
The publications are also available to download as PDF files on PACER’s Web site at
www.pacer.org/ec/new.asp.
Do you want to make a difference? Change attitudes?
Order PACER's COUNT ME IN® puppets!
Help children learn about disabilities with your very own set of COUNT ME IN® hand-and-rod puppets. The puppets represent children who have various disabilities and are the stars of 45-minute to 60-minute educational programs for preschool and elementary grades 1-4.
The puppets are for sale in sets:
BASIC SET: Six puppets with scripts for preschool and elementary shows.
STARTER SET: Three puppets with scripts on several disabilities for elementary students.
All sets include puppet props, “Disability Awareness: A Guidebook for Families and Educators,” and a “Coordinator’s Handbook” for creating a COUNT ME IN® project with volunteers.
Visit these engaging puppets at www.PACER.org/puppets!
For more information e-mail puppets@PACER.org or call PACER at (952) 838-9000.
PACER's site offers many PDF files for download, which require 
