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Envisioning Early: Harper Turman’s Story

From an early age, there were high expectations for Harper Turman. With the right tools, he’d speak. With the right supports, he’d have hobbies. And with the right planning, he’d enter the world of employment.

How quickly those expectations and dreams became a reality for Harper, who has Cornelia de Lange Syndrome. This past spring, the 18-year-old stood alongside his peers at the Class of 2011 graduation. His mother Nicole (and PEAL Board Member) notes how important Harper’s supports have been – and how crucial it was to have a plan.

“Having that vision and being able to stick with it and stay focused is what helped me to bring everyone on board that needed to share in that vision,” said Nicole. “I expect Harper to continue learning new things. I expect him to work (and he is right now) with the supports that he needs. And, I expect him to live in a place of his own and of his choosing with supports he needs to be successful.”

Now, Harper will continue to receive educational programming from the public school system until he is 21. Nicole and the support team worked hard to put together a meaningful post-high school program for Harper, which he will begin in Fall 2011.

“Harper will have work experience built into his program,” said Nicole. “He’ll be working at a local hospital, theater (when shows are running) and fire department, along with other community businesses.”

This work, in combination with a community college class, will help Harper continue to build work skills, gain independence and develop pragmatic social skills for the workplace.

This summer Harper is busy with an ESY program that is also work experience. He is working as camp counselor at a day camp, where he was once a camper. He held this same paid position last summer as part of the Work Incentive Act (WIA), a program available to youth in the Johnstown, PA, area. Unfortunately, the funding ended this year, but Harper was able to secure the position through a school partnership.

Nicole notes other critical supports throughout Harper’s life. He had early involvement with the Office of Vocational Rehabilitation (OVR), where he was able to have testing done and identify future resources.

“Having those services in place makes all the difference in having the support Harper will need as he finishes his educational programming,” said Nicole.

In addition, Harper also had natural supports. He was included in his school, church and community, where he formed relationships and friendships. He is now an avid biker, swimmer and takes drum lessons. He also uses a laptop, which was a great resource to him in school and his social life.

Nicole and her family had access to another family who provided support and advice along the way. She credits this relationship, along with proper planning, to Harper’s successful transition to adulthood.

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Trial and Error: Nicole McGuirk’s Journey

Often, it takes a lot of trial and error before figuring out one’s life course. That describes 21-year-old Nicole McGuirk’s journey toward adulthood, through and through.

After years of exploring different interests, Nicole is finally doing what she loves. With the help of Mary Remington (former teacher and Nicole’s aide), Nicole volunteers one day at the Veteran’s Affairs Hospital in Oakland, another day helping with Meals on Wheels and Fridays are spent at the Aviary. Although she now has a nicely structured week, the journey to get there wasn’t easy.

“From the time she was a teenager, it enveloped us 24 hours a day. You don’t want to miss a beat,” said Mary Ann McGuirk (Nicole’s mother). “I started asking everyone I could think of; do they have something Nicole could do?”

Nicole, who is diagnosed with both Autism and Cerebral Palsy, is a very social young woman with complex needs.  Thriving on social interaction, she is not the type of person who likes to perform repetitive work for hours at a time. With this in mind, her family looked toward personal interests.

“We set her up with a volunteer position at a local library,” said Mary Ann. “She’d always loved looking at books and pictures.”

However, the family and Nicole soon realized that mixing work with pleasure was not a good fit. She was confused about why – instead of taking out books and DVDs – she was now stocking them silently.

“She taught us that sometimes work and leisure just don’t mix,” said Mary Ann.

Back to the drawing board, the family considered Eat’n Park, one of Nicole’s favorite restaurants. Nicole’s family and Transition Coordinator met with the Human Resources Director, and he was very supportive about her greeting customers. However, just as the ball got moving, the director took another job, and the new contact was less responsive to the request.

“We thought maybe it just wasn’t meant to be,” said Mary Ann.

With more phone calls, emails and face-to-face contact with area businesses came more success. Mary Ann was able to find more flexible managers who were welcoming to Nicole working and volunteering at their businesses. Even though her week is more fulfilling now, “the best situation needs tweaked every day or every other day,” according to Mary Ann.

When thinking of advice for parents and youth in similar situations, Mary Ann stresses the importance of early thought in regards to transition. “Nicole really struggled when she first left school and was without a routine,” said Mary Ann. “But now that she is out in the community she has continued to learn beyond our expectations.”

She also notes the importance of carving out a distinct plan for your child.

“Every transition plan is individualized because everyone is different. One size does not fit all. If children do not fit the mold, it’s up to the parents to come up with some other suggestions so that their child can have a role in the workplace.”

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Keynote Speaker Bio: Michael Beers

Throughout the next month, we will feature bios and session descriptions from our great line-up of presenters for the 5th Annual PEAL Conference on Inclusion. We hope you start preparing your questions and get ready for a great discussion from leaders in the field! Read more about the conference and register here.

Michael Beers, Peer Advocate, Comic

A comedian and self advocate, Michael’s comedy is insightful and good-natured, leaving his audience with a new perspective on life. A large portion of Michael’s act is based on his own life growing up in Montana with his mother, three sisters, their dogs and his disability. A delegate and staff member of the Montana Youth Leadership Forum, Michael also works part-time as a peer advocate for Summit Independent Living Center in Missoula, Montana.

Comedy Club, April 11, 8 p.m.

Session 9, April 11, 2:15 p.m.: Architect for Empowerment: Creating Doorways
Presenting with Josie Badger, M.S., C.R.C., Youth Coordinator, PEAL Center. For youth with disabilities, there are countless barriers in the pursuit of opportunities and empowerment. This session will present ways that parents, peers, teachers and mentors can build opportunities for empowerment.

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Featured Speaker Bios: Norman Kunc & Emma Van der Klift

Throughout the next month, we will feature bios and session descriptions from our great line-up of presenters for the 5th Annual PEAL Conference on Inclusion. We hope you start preparing your questions and get ready for a great discussion from leaders in the field! Read more about the conference and register here.

Norman Kunc & Emma Van der Klift

Co-Directors, Broadreach Training & Resources, LTD

Norman Kunc and Emma Van der Klift have spent the last 25 years working to ensure that people with disabilities are able to take their rightful place in schools, workplaces, and communities.  Although they are well known advocates within the disability rights community, they prefer to think of themselves as modern day storytellers, continuing the long held tradition of using humor and narrative to initiate self-reflection and social change.    Norman and Emma are co-directors of Broadreach Training and Resources Ltd. They provide in-service and training in the areas of inclusive education, employment equity, conflict resolution, and other disability rights issues. They travel extensively throughout North America and abroad working with school districts, human service agencies, employers and advocacy groups. Emma and Norman have collaborated on a number of writing projects, including one chapter discussing the underlying power dynamics in a helper/helpee relationship, and another chapter challenging the perspective of disability as a deficiency. Currently they are working on a book, which contends that the field of rehabilitation tyrannizes people with disabilities in the same way that the diet industry tyrannizes women.

Session 7, April 11, 10:30 a.m.: New Students, New Questions: Supporting the Classroom Teacher in an Inclusive School
As an increasing number of students with disabilities are being included into regular classes, there is growing consensus among teachers about what supports need to be in place for inclusion to be manageable and successful. Based on personal experience and the input of classroom teachers throughout North America, Norman Kunc and Emma Van der Klift examine five areas of support which need to be present if teachers are to welcome students with disabilities into their classrooms: Information, Collaborative Planning, Shared Agreement on Goals and Expectations, Classroom and School Based Supports and Classroom Assistants. This session also addresses the question of fair and appropriate evaluation and briefly describes some ideas for supporting students with atypical or disruptive behavior.

Session 15, April 11, 2:15 p.m.: I Need a Friend, Not a Buddy! Fostering Authentic Friendships in School and The Community
Many of us have created friendship circles and buddy systems in an attempt to help students with disabilities feel more included in their neighborhood schools. In spite of genuine efforts and admirable intent, these supports have often perpetuated traditional attitudes of charity and benevolence. In this presentation, Norman Kunc and Emma Van der Klift examine the issues of friendship, respect and benevolence. They suggest how teachers can foster friendships between disabled and non-disabled students without turning the disabled student him/her into the “poster child” of the school.

Session 24, April 12, 10:30 a.m.: Learning to Stand Still: Supporting Students with Puzzling Behavior
Supporting disruptive or non-compliant students is often seen as the most formidable challenge of inclusive education. In this strand, Emma Van der Klift and Norman Kunc explore the idea that these students do not necessarily have inherent “behavior problems,” but may actually be trying to solve problems in unsuccessful ways. Emma and Norman explore the importance of remaining curious and resisting the urge to provide “quick, positive, interventions.” As an alternative, they will provide participants with a series of questions that help in uncovering possible reasons why the person may be responding in
this way.

Session 32, April 12, 1:15 p.m.: Hell-bent on Helping: Support, Benevolence and the Politics of Help
Why do most of us like offering help but often resent being helped? In this presentation, Norman Kunc and Emma Van der Klift explore the underlying dynamics of “help” that often accompanies assistance and personal support. They outline some of the central characteristics of “respectful support” and maintain that we must stay continuously attuned to issues of personal dignity and respect if we are to avoid climates of custodial control.

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Featured Speaker Bio: Mary Beth Doyle

Throughout the next month, we will feature bios and session descriptions from our great line-up of presenters for the 5th Annual PEAL Conference on Inclusion. We hope you start preparing your questions and get ready for a great discussion from leaders in the field! Read more about the conference and register here.

Mary Beth Doyle, Ph.D. Saint Michael’s College

Mary Beth’s primary work is in teacher preparation. She supports undergraduate and graduate students to teach in inclusive classroom communities where all students are valued and respected. Mary Beth has a particular interest in supporting pre-service and inservice teachers in designing rich and interesting curriculum for students with severe disabilities. Mary Beth has spent the last 15 years learning and teaching about effective ways to support paraprofessionals as part of educational teams.

Session 4, April 11, 10:30 a.m.: The Paraprofessional’s Guide to the Inclusive Classroom: Working As A Team (Part 1)
Based on her book of the same title, Mary Beth will guide teams through a series of activities to support paraprofessionals as members of the team. Standards 4 and 10 of the Credential of Competency for Special Education Instructional Paraprofessionals in PA will be addressed.

Session 12, April 11, 2:15 p.m.: The Paraprofessional’s Guide to the Inclusive Classroom: Working As A Team (Part 2)
This is a continuation of the morning session. Particular focus areas will be (a) determining communicative intent of behaviors and (b) curricular access at the high school level. Standards 5 and 7 of the Credential of Competency for Special Education Instructional Paraprofessionals in PA will be addressed.

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Speaker Bios: Daniel Gottleib

Throughout the next month, we will feature bios and session descriptions from our great line-up of presenters for the 5th Annual PEAL Conference on Inclusion. We hope you start preparing your questions and get ready for a great discussion from leaders in the field! Read more about the conference and register here.

Dr. Daniel Gotteib, Author and Radio Host

Daniel Gottlieb received undergraduate and graduate degrees at Temple University. Shortly thereafter he was the director of several substance abuse programs in Philadelphia and maintained a private practice. Since 1985 he has been hosting “voices in the family” a psychology call in show on Philadelphia’s NPR affiliate. In 1995, he began writing a weekly column for the Philadelphia Inquirer entitled “on healing”. He continued that until last year. Now he is a contributor to the Huffington Post. Author of four books including: “voices in the family” “letters to Sam” “the wisdom of Sam” “learning from the heart”.

Keynote Address, April 11, 9 a.m.: On Being Different: Who We Are, What We Need and What We Teach
Our language keeps changing from crippled to invalid to disabled to special needs. But that says nothing about our humanity. This presentation will talk about what it means to be human and what it means to be different.

Session 1, April 11, 10:15 a.m.: Conversation with Dr. Dan
Come and join Dr. Dan for an open conversation about your questions, comments and topics of interest.

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Liz Healey Receives Baker Leadership Award

On January 25, PEAL Executive Director Liz Healey received her Bakership Leadership Award. She was nominated by Member-At-Large Joe Kleppick. See pictures of Healey and Kleppick below.

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Liz Healey Recognized as Dignity and Respect Champion for Her Work in Improving the Lives of Those with Disabilities

As the mother of a child with significant disabilities, Elisabeth Healey believes that she needs to help others who are in similar situations.

“I know how difficult it was for me as a young parent to understand the nature of my daughter’s needs and how to navigate the system to get the services she required. Very quickly I began to feel that I couldn’t fix things just for my daughter. I needed to be active in advocating in the community,” Healey said.

Nominated by Cindy Duch, Joan Badger, Ceil Belasco, and Stephanie Tecza, Elisabeth has been chosen as the January Dignity and Respect Champion for her work to ensure anyone with disabilities and special health care needs leads rich and active lives, and participates as members of the community. She works to help others reach their full potential.

“She strives to encourage those with and without disabilities to reach for the stars and never stop,” Duch says.

Elisabeth lives in Squirrel Hill with her husband and daughter. As founding executive director of PEAL, or Parent Education & Advocacy Leadership Center, she finds it rewarding to be able to help those with disabilities. Treating others with dignity and respect is important to what she does.

“I live it. [My job] is my life. I think of Gandhi and how he said that you have to be the change you want to see in the world. We have to think about how we interact with others and navigate the world. We need to challenge ourselves so we don’t leave anyone out of our circle.”

Elisabeth feels that if everyone treated each other with dignity and respect, the community would drastically change.

“Many people in our community lead isolated lives. If we make people feel welcome, we impact the quality of our own life, and the lives of everyone else, both in big and small ways.”

Honored and excited about receiving this award, she credits her community of family, friends, and colleagues who taught her important values.

“Being recognized with this award makes me look back to where I learned these values and beliefs. It is not just a recognition of me, it is a recognition of my community as well,” she said.

The Dignity & Respect Campaign is an awareness campaign designed to join individuals, community leaders, community organizations, educational institutions, businesses, and corporations under the common notion that everyone deserves dignity and respect.

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2010 Fall/Winter PEAL News on Health Care Reform

The 2010 fall/winter edition of PEAL News will be hitting the mailboxes of our subscribers in the next two weeks. If you’d like to view the newsletter electronically, click here. This issue is jam-packed with the information you need to know about health care reform. We’re also introducing a new design! If you have questions, please email rhuber@pealcenter.org.

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PEAL to Participate in OSEP’s Technology Leadership Initiative

The Office of Special Education Programs (OSEP) is pleased to announce that the following eight centers will participate in the Technology Leadership Initiative (TLI) funded by OSEP:

Parent Training and Information Centers (PTIs)
Region 1: Sinergia (NY)
Region 2: Support and Training for Exceptional Parents (STEP – TN)
Region 3: Louisiana PTI (LA)
Region 4: Parent Education and Advocacy Leadership Center (PEAL – PA)
Region 5: South Dakota Parent Connection (SD)
Region 6: Team of Advocates for Special Kids (TASK – CA)

Community Parent Resource Centers (CPRCs)
Hispanos Unidos para Niños Excepcionales (HUNE – PA)
Denver Metro CPRC (CO)

The goal of the TLI is to create a strategic planning model for updating technology plans for federally funded Parent Centers and provide the support to implement it in the eight pilot centers. The model will teach Parent Centers to make better decisions regarding technology that directly supports and is integrated into their missions and project activities.  The TLI will then incorporate the model in turnaround training so that centers with sustainable and effective technology plans can mentor additional centers as they develop technology plans. The turnaround training and technical assistance will create a self-sustaining networking, mentoring, and coaching system for increasing Parent Centers’ effective use of technology.

On behalf of the Technology Leadership Initiative, we would like to thank all 44 centers that applied to participate in this important work. We received many high-quality applications and had to make difficult decisions to ensure a broad representation of Parent Centers (rural/urban, population served, size of organization, current technology use, etc.) among the pilot group. All applicants showed a great deal of commitment to the project and doing the sustained work the project requires.

We look forward to the TLI and these eight centers sharing more information in the months ahead.

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