C e r e b r a l P a l s y A s s o c i a t i o n o f B r i t i s h C o l u mbi a

The Roundtable
SUMMER 2005

Presidents Word
Hi All, I am writing this on a Sunday afternoon with an outside temperature of 30 degrees. I have fans blowing, every door and window open and I have a nice cold drink beside me. Life is good. I hope everyone is enjoying the summer season.

Inside this issue:

Cerebral Palsy and the Law Whole Schooling Conference Thank You News, Sites & AGM New Possibilities for People with Disabilities Putting The Puzzle Together Impact Study Membership Info 2 3 3 4,5 6

We are coming close to the 2005 AGM. I have been honoured to serve as your President and I look forward to continuing to serve for another exciting and prosperous year. I am delighted at opportunity to meeting those who will be attending the AGM. The Board of Directors also wishes to thank you for your trust over the past year. The Directors that are seeking re-election ask for your endorsement for another 2yr term. These are some of the highlights of the past year: We saw the unfortunate departure of Richard Rheaume from the Board of Directors. Richard has been very active in CPABC over the years and it was time for him to move on to new and different endeavors. Please join me in wishing Richard well. I am pleased to announce that the Board of Directors have agreed to work jointly on a project with the Wittman family and Shawn Pigott. The project involves the further development of a computer software program for people with significant disabilities. The project will also include a test group to measure the adaptability of the program. Please refer to the Wittman article in this issue for more details. The Board recognizes and is excited by the potential of this project. We have teamed with a Kwantlen College instructor to update the Putting

the Puzzle Together, Teachers Manual. The instructor will be updating various sections as class assignments. We look forward to the end product of the assignments. We have Michael, our summer student, assisting in updating our Parents Manual. Tammy Van der Kamp continues to expertly speak and represent CPABC at various events and speaking opportunities. Feri Dehdar continues to run our office effectively and keeps me on top of things that are important. Jonn Olldym and I attended a workshop on community service learning that was sponsored by UBC. This learning model focuses on providing community service opportunities for students. These opportunities could be part of a students curriculum or as an extracurricular experience. The model is founded on building relationships of academic institutions, professors/ instructors and community service groups (such as ours). Jonn & I were impressed at the win-win potential for CPABC in being involved in this UBC initiative. Stay tuned! On behalf of CPABC, I participated in the first of three visioning sessions with Translink and Handidart on making positive changes towards having a truly integrated transit system that is accessible to people of all abilities and challenges. The second session is scheduled to happen on Oct/Nov. 2005. All in all, 2004/2005 has been positive for CPABC and I look forward to further successes for 2005/2006. Thanks,

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CP A AG BC M

Craig Langston
President, CPABC

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Cerebral Palsy and The Law

By Don Renaud Board Director CPABC In BC, government assistance for people with disabilities is inadequate at best. Even so, it seems a constant fight to maintain todays levels. Therefore it is essential for parents to look closely at the circumstances surrounding their childs diagnosis of CP. It may be that the childs CP could have been prevented by the exercise of due care. It may be that monetary compensation can be obtained from the insurers of those who failed to take care. If it can be proven in court that the failure to take care caused CP the resulting compensation can go a long way to ease the challenges of day to day living. Cerebral Palsy is caused by damage to the developing brain. Broadly speaking, this damage can be due to either developmental factors or injury to the brain before, during, or after the birth process. In the first case, the brain has failed to develop normally for reasons such as genetic abnormality or metabolic disease. It is often difficult to say what disrupted the brains normal development process. Litigation respecting developmental malformations is usually not feasible at this time. It is in the second case, where CP has been caused by a trauma or injury to the brain at some point either before, during, or after the birth of a child that parents should look most closely at the circumstances. Oxygen deprivation, infection, drug interaction, severe jaundice, and bleeding into the brain are all examples of incidents which should be scrutinized. Head injuries from a motor vehicle collision, a fall, or a difficult delivery are further examples of incidents which can damage the brain and lead to CP. It is well known that trauma to the brain often can be prevented by proper risk management and care before, during, and after the birth process. Health professionals are trained to identify risk factors and to intervene to prevent trauma and damage to the fetal/ newborn brain. As well, procedures are put in place for doctors and nurses to follow when faced with different risk scenarios. Training and procedures are what the law refers to as standard of care. Standard of care is really a concept familiar to us all. For example, as drivers we were required to be trained and demonstrate a certain level of competence before getting a license. As drivers were all expected to remember our training and follow the rules of the road. We might get away with ignoring a certain stop sign, but when a collision occurs, theres no doubt wed be held responsible. To not stop at a stop sign is to breach the standard of care. When health professionals fail to identify risk factors or intervene to prevent brain damage, the law may hold them responsible for the consequences of this neglect of duty. The medical profession is a collegial profession rather than an adversarial profession such as the legal profession. It is unlikely parents will get straight answers regarding standard of care breaches or the cause of trauma induced brain damage from health professionals. It is incumbent upon parents to obtain expert assistance, usually through the office of lawyers with access to appropriate medical examiners and experts, to determine whether litigation is feasible. A few of the indicators of medical mistake may have occurred that lead parents to consult with a lawyer are as follows: very low or very high birth weight multiple births meconium aspiration cord prolapse cord compression emergency delivery by cesarean section, forceps or vacuum extraction infections such as meningitis or herpes gestational diabetes seizures within a few days of birth specialists called in to care for newborn jaundice emergency resuscitation Most lawyers with a serious interest in birth trauma cases will conduct these preliminary investigations at no cost to the parents. Should a medical error which caused brain damage and CP be revealed, contingency fee arrangements are available. It is incumbent upon parents and their advisors to make enquiries. There is a compensation fund available if it can be shown that a childs CP is a harm which resulted from medical care. Don Renaud is a Trial Lawyer with over 20 years experience in the courts of British Columbia. He is a past president of the Trial Lawyers Association of British Columbia, a member of the Medical Negligence and Birth Trauma subsections of the Association of Trial Lawyers of America, and a Director of the Cerebral Palsy Association of B.C.

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Whole Schooling Conference

By Carol Stinson

Treasurer CPABC Raising the Standard for All was the theme of this years Whole Schooling conference which took place in Edmonton, Alberta in late April. Carol Stinson attended wearing many hats: as a representative of the CPABC; as a parent of a child who has fought to be included; and as a professional who helps other parents maintain good inclusive placements for their children. For more information about the Whole Schooling Consortium, please see: www.wholeschooling.net/ For parents, one of the highlights of the conference was the presentation by Janice Fialka on parent professional partnerships. Janice based her keynote on the metaphorical question, If this is a dance of partnership, why do my feet hurt? Janices background is in social work and she is able to speak eloquently from both sides of the parent/professional partnership. Her book, Do You Hear What I Hear? Parents and Professionals Working Together for Children with Special Needs is available from the CPABC library. The library also has It Matters: Lessons from my son, a

collection of poetry and prose Janice has written over the years expressing the joys and frustrations of raising a child with a disability. Find out more about Janice Fialka and her writing at: www.danceofpartnership.com/index.html For professionals Dick Sobseys session, Reconciling inclusion and educational achievement was particularly interesting. Dick Sobsey is a Professor in the Department of Educational Psychology at the University of Alberta. Dr. Sobsey and his students reviewed articles and research on inclusive education over the past 50 years and found that no studies have shown an educational benefit from segregated classrooms or learning environments. Not one. Meanwhile, research on inclusive classrooms has shown a benefit in social and academic results for both typical learners and learners with special needs. And inclusive classrooms cost less! This is the kind of knowledge advocates need as children with CP are increasing forced out of the regular school classrooms on the mistaken assumption that a segregated classroom is better. You can find out more about Dr. Sobsey and his research at: www.ualberta.ca/~jpdasddc/INDEX.html
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you for your participation in the recent Membership Survey. Preparing the surveys for mailing was no small feat but thanks to the support of the Associations board of directors, the assistance of Associations office manager, Feri Dehdar, and the volunteers who sorted, compiled, labelled and stamped each survey package you received, the surveys were completed for mailing on July 4th, 4 days from start to finish. Amazing! The surveys, which were mailed to all present and past members, are now being processed as they return. Thanks to all who assisted! I also appreciate every members effort to take the time to thoughtfully answer each of the questions presented in this survey. As indicated in the survey package, your feedback will enable the board of directors to assess the current memberships composition, disposition and perspective on what the Association and, in particular, the board of directors, is doing in terms of leadership and strategic direction.

ear members of the Cerebral Palsy Association of British Columbia. I wish to thank all of

By completing the survey you have enabled the Association and its leadership to identify the me mb erships cu rrent demographics, interests and desires, professed benefits in receiving services and possibly uncover current needs that may have been overlooked. By completing this survey you have enabled the Associations board of directors to stay in-tune with what the membership thinks. As a member of the Association, you have exercised your voice regarding the current and future direction of the Association. Thank you again for participating. The results will be summarized in a future CPABC newsletter. Sincerely,

Peter Shipley
Board Director CPABC

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CPABC picks up funds with clothing

The CPABC relies on our clothing boxes for our fundraising and we are always working to develop new locations for our clothing drop-off boxes. If you or your place of business can host a clothing drop-off box and you are located anywhere in the Lower Mainland, please call Feri at the office. Remember, the CPABC partners with the Salvation Army so all of the money raised goes to a non-profit organization. Drop-off box locations in Vancouver: Champlain Hts Community Centre Vancouver Aquatic Centre Kensington Community Centre Riley Park Community Centre West End Community Centre Britannia Community Centre Dunbar Community Centre

INFORMATION SESSIONS BCPA EMPLOYMENT OUTREACH Know anyone who has a physical disability and wants to access the labour market? Send them to BCPA. Starting August 4, 2005 the BCPA Employment Outreach team will be running information sessions every Thursday afternoon. Have your clients/members come and see what specialized employment counselling is all about. For more information please contact: Tammy Marks, Employment Counsellor @ BC Paraplegic Association Tel: (604) 326-1204 Email: tmarks@bcpara.org Website: www.bcpara.org

NEWS...SITES...NEWS...SITES...NEWS...SITES...NEWS...SITES...
Autism Society Canada is pleased to announce the launch of a new website. The site will be a valuable resource for people with Autism Spectrum Disorders, parents and caregivers of children with autism, family members, volunteers, educators, health and social service professionals and interested researchers. The new site offers reliable information on autism and over 400 links to helpful resources. You will also find news of Autism Society Canada's (ASC) recent activities and publications. Please visit: www.autismsocietycanada.ca.

Press Release from Autism Society Canada

Way to Go Tammy!
On June 23rd at the BC Paraplegic Association's Annual General Meeting/ Barbecue, our Family & Individual Support Worker, Tammy van der Kamp was honored with a Recognition Award for her dedicated volunteer work with the Bridges to the Future Program since early 2003. Tammy was among several people in the community to be honored for their dedicated volunteerism. The Bridges to the Future Program is for individuals ages 16-24. The program inspires young people living with disabilities to be active participants in their communities. Bridges builds confidence by promoting realistic educational goals, positive relationships, self-advocacy and independent living skills. For more information on the Bridges Program, call Tammy at Cerebral Palsy Association of British Columbia office @ (604) 515-9455.

Support the CPABC! Play Bingo at Boardwalk Gaming Centre

Saturday, August 20, 2005 Thursday, October 20, 2005

Middlegate Mall Unit 3-7155 Kingsway Burnaby

For more information visit www.lmcharities.org

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WE NEED YOUR PHOTOS & STORIES!!!

Dear Members: The Cerebral Palsy Association is currently updating its Living with CP manual and we need photos to put in the manual. We are looking for photos of children, teens, adults and the elderly engaged in a variety of activities like being at home, at school, or with friends and family. If you have photos of yourself or of your child and would like to be a part of our manual please send them to us. In addition we are also looking for personal accounts and stories describing what it is like to have a sibling with CP. If you or a family member has a story about their brother or sister with CP and would like to share it with our readers please send it to the address below. Via email: info@bccerebralpalsy.com or mail them to CPABC office.

Summer Acting Programs for persons with disabilities

Summer Fringe Camp: The Theatre Terrific Society Summer Fringe Camp for adults with disabilities starts soon. 12 actors and two teachers will meet twice weekly to train, explore, create and perform an original ensemble production at the Vancouver Fringe Festival. Participants will increase their acting skills through mask making, movement, singing and character development. The Summer Fringe Camp is open to anyone 18 and over interested in acting or performance. Enrolment is limited to 12. The criteria for being in the Camp is you must make a commitment to all rehearsals and performances, and to working in the ensemble. Where: Vancouver Japanese United Church, 4010 Victoria Drive at 23rd Ave Classes: July 19 Aug. 25, every Tues and Thurs, 6:30 pm 9 pm Rehearsals: Aug. 29 Sept. 2, Mon Fri, and Sept. 6, 6:30 9 pm Fringe Performances: Sept. 8,9,10,14,15,16 and 17 Who: Actors with disabilities age 18 and over Cost: $250 Instructors: Susanna Uchatius (Artistic Director) and Darlene Brookes Contact: Artistic Director at Theatre Terrific @ (604) 222-4020 for more information.

CPABC ANNUAL GENERAL MEETING

When: Wednesday, September 14, 2005 Where: Burnaby Association
for Community Inclusion 2702 Norland Avenue Burnaby, BC V5B 3A6 7 PM 9 PM

NOTICE

Notice of Resolution:

Be it resolved that CPABC mission be amended from the bylaws of the CPABC. "Our mission To promote and enhance an environment where individuals with cerebral palsy are able to maximize their potential and improve their lives. The bylaw now reads: Our mission ... To raise awareness of Cerebral Palsy in the community To assist those living with Cerebral Palsy to reach their maximum potential To work to see those living with Cerebral Palsy realize their place as equals within a diverse society."

Guest Speaker: Dr. Kishore Mulpuri Topic: Surgical and Medical Management of
Cerebral Palsy Learn more by checking www.bccerebralpalsy.com

Please RSVP by phone: 604.515.9455 or Email: info@bccerebralpalsy.com

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THE ROUNDTABLE

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Exciting New Possibilities for People with Disabilities

By Marty Wittman

C P A B C D I R E C T O R S 0 5 / 0 6

In March of this year, the CPABC Board heard about an exciting proposal to provide software programs for people with severe disabilities. Michael Wittman, who lives with multiple disabilities and who is dependent on others for all his daily activities met Shawn Pigott, a creative musician and computer programmer, five years ago when Shawn became his primary caregiver. Since then, their caregiver/client relationship has evolved into a unique partnership that has broken through Michaels barrier of dependency and silence and promises to open possibilities for others. Michael already had a high degree of independence in his determination, but still remained highly dependent on others to interpret his yes/no eyepointing responses and his facilitated spelling on a crude alphabet board. The adaptive technology already on the market did not meet his needs, and because of his severe spasticity and visual impairment, he could not access many of these programs. Still, it was clear that Michael did not want to rely on caregivers to design his life. With that awareness, Shawn and Michael created, INDEP" (short for Independence). INDEP is an organizational program that gives access to a variety of other programs; these include a daily planner, a program to send, receive, read, and respond to email, an innovative spelling tool as well as a program to organize personal information. All of these programs function both visually and audibly. With these and other programs, Michael has been able to host a weekly games group where other individuals with disabilities engage in independent competitive play in Yahtzee, Life, and Risk. He has also been able to have independent conversations; and to write, play, and perform music. Shawn and Michael are so excited about these programs and the possibilities they offer for other people like Michael that they propose to make these programs available to others. To make this possible, the CPABC board has agreed to endorse their endeavours to work jointly with them in seeking funding for their proposal. They look forward to working creatively with other individuals to expand and develop this exciting new software. For information on these and other programs, visit www.ampertec.com or reach them at michael@ampertec.com or shawn@ampertec.com

CRAIG LANGSTON (President) Surrey SIMON COX (Vice President) Vancouver CAROL STINSON (Treasurer/Secretary) Burnaby LIZ CALDER Fort St. John MEGAN MADDIGAN Surrey JONN OLLDYM Vancouver DON RENAUD Burnaby PETER SHIPLEY White Rock

Thanks to our on going volunteers ....

Regina Bandong Tony Kruse Mike Stevens Patricia Furdek Michael Murray Michael Cheung Ron Wyant Marianne Powley Pamela Liu Ronald Lee Maggie Prentice Wesley Kong

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Whenever a college class can move away from theoretical applications to situations that exist only in the imaginations of students or instructors, and take on projects grounded in reality and with potential benefit not only for themselves but also for practitioners and parents involved with children who have exceptional needs; thats a wonderful opportunity that can not be ignored! So when my class and I were approached last fall by the CP Association to see if we were interested in helping with a needed update of their instructors support manual, Putting The Puzzle Together, our response was overwhelmingly positive. It has been a big job, involving substantive changes, and the final version will probably not be ready until January, 2006, but the experience of looking at the many disorders and challenging conditions that todays children may face, and also researching and sharing the latest information about the best ways to support their needs was worthwhile for my students, especially because they recognized the value and usefulness of the binder. So far, we have updated the technical support information, with links to both the internet and agencies that can provide material and equipment; and we have rewritten the section that describes the individual disorders, not only with updated technical information, but

also with additions of quotations and stories that we hope will place emphasis on the people involved, rather than on the conditions or disorder. Many students developed fictional but very vivid accounts of A Day in the Life..., that demonstrate the depth of their understanding and will help people in the field to gain information and insights in a more personal way. These stories are there to be copied and shared in any way that is useful. Some students (and future special needs teacher assistants) are also parents and siblings of children and adults who have exceptional needs, and they have written very personal and powerful accounts of their own ongoing journeys toward inclusion both in school and society. The overall structure of the manual will also be different, reflecting the changing conditions in schools, with computer labs and direct access to the resources of the Internet. Attitudes about inclusions are dynamic and change as people gain experience. Some of these changes will be reflected in the manual. We have also paid particular attention to the rights, regulations, and supports that are particular to B.C., since this is where we live and work. It is our hope and intent to make the final updated version of the manual available both as a binder and a compact disc. Be on the lookout! Ulla Martin Instructor Kwantlen College SETA Program

Impact Study on Neurological Diseases, Disorders & Injuries in Canada

The CPABC is currently participating in an impact study on neurological diseases, disorders, and injuries in Canada. The Canadian Institute for Health Information (CIHI) and The Canadian Brain and Nerve Health Coalition (CBANHC), in collaboration with Voluntary Health Organizations, including CPABC is conducting this study because there are no comprehensive statistics on the incidence, prevalence, and the economic and social impact on these types of conditions in Canada. One of the objectives of the study is to highlight the information that is currently available,

and make it accessible to a broad range of key decision makers in order to enhance research and access to health care services for patients and caregivers. By gathering this information, it will increase awareness of conditions such as CP and possibly lead to more funding and improve services in our health care system. Some of the conditions identified in the study include A.L.S., Brain Injury, Epilepsy, Spinal Cord Injury, Cerebral Palsy, and Stroke. Dr. Eman Hassan and Tammy van der Kamp from our organization provided a chapter for the study that described CP including the signs and symptoms. The study will take a year. The completion date is approximately January 2006. For more information on this study contact Tammy at CPABC @ (604) 515-9455

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Enquiry CP: 1.800.663.0004

Printed information from CPABC: - How to Create a Trust - Speak Up! Advocacy tips - BOTOX Treatment for CP - HBOT Hyperbaric Oxygen Therapy - Planning Your Will - Equipment Funding Package - Early Intervention for Cerebral Palsy - CSIL Program Information - Welcome Kit CPABC services - Putting the Puzzle Together a tool for parents and educators-$30.00 - Living with CP Resource manual for persons living with CP -$20.00

Celebrating 51 Years in British Columbia! The Roundtable is the official newsletter of the CPABC. The CPABC and the editor of this newsletter take no responsibility for, nor do they necessarily agree with, the opinions contained in this publication. Contributing Writers: Craig Langston, Carol Stinson, Don Renaud, Peter Shipley, Ulla Martin, Tammy van der Kamp, Marty Wittman, Feri Dehdar Cerebral Palsy Association of British Columbia 102-317 Columbia St. New Westminster, BC V3L 1A7 Phone: 604.515.9455 Toll-Free (Enquiry CP): 1.800.663.0004 Fax: 604.515.9466 Email: info@bccerebralpalsy.com Office Hrs: 9 AM to 5PM, Monday to Thursday

Members with expertise are available for public speaking engagements. Call the office for more details.

Were on the web: www.bccerebralpalsy.com

Nowmore than ever before your membership will help to

Realize equality in a diverse society!

Become a member today!

Name: Address: City: Email Address: Postal Code: Phone No:

Membership: $20 Or whatever you can afford Donation: I would like to make a donation to support the services and programs of the Cerebral Palsy Association of British Columbia. Income tax receipts are only issued for donations of $10 or more, unless requested. $100 $75 $50 $25 My choice: _________ Method of Payment: I have enclosed a cheque payable to the CPABC or: Visa #:________________________________ Expiry Date: _____________________ Name on Card: _________________________ Todays Date: ____________________ Signature: _____________________________ Please mail to: Cerebral Palsy Association of British Columbia 102 317 Columbia Street, New Westminster, BC V3L 1A7
Charitable Registration Business Number 10690 4204 RR0001