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
FALL 2005

Inside this issue:

CPABC Survey Results in Brief CPABC_ AGM Speaker News & Sites Presidents Word Incidence of CP in British Columbia Out And About With Tammy Membership & Donation form Info 2 3

4,5 6 6 7

A Special Thanks to
The Mr. and Mrs. P.A. Woodwards Foundation,

for authorizing a grant of $5,755 to CPABC for the purchase of a refurbished photocopier. Our current photocopier is 15 years old and can no longer be serviced.

Information & Referral Specialist: The Cerebral Palsy Association has an Information and Referral Specialist available to connect people with programs and services of interest to those living with, or supporting those with Cerebral Palsy. In the last year, Tammy van der Kamp has handled 221 inquiries requesting everything from basic information on CP, to professionals needing complex medical information. Monthly Lower Mainland Support Group: For anyone living with, or interested in Cerebral Palsy and other disability issues. The Guide to CP: A complementary booklet designed to be a general introduction for anyone interested in cerebral palsy, such as: parents whose child has recently been diagnosed as having CP, or who is suspected of having CP; people with cp wanting basic information, or wishing to provide information to friends and assistants; educators, social service and health professionals; friends, relatives and colleagues of people with CP. This booklet was updated as well as translated to French last year and will be printed in January 2006. Living with CP: A manual outlining the services available to individuals and families living with this condition has long been the centrepiece of our information services. Living with CP manual was updated last summer and will be printed in January 2006. Putting the Puzzle Together: A manual for educators and para-educators on how to include children with all types of disabilities in the so-called regular classroom. This manual has been used as required reading at the Kwantlen University College course for community and classroom support workers. This was being revised since 2005 in conjunction with Kwantlen College, Special Education Teacher Assistance Program, and will be available in few months in both forms as a print and compact disk. Library: Our library contains books and videos concerning Cerebral Palsy that are useful to parents, professionals, and those living with CP. We acquired new books this year and lent out resources to British Columbian. Speakers Bureau: Raises public awareness of Cerebral Palsy and works to remove attitudinal barriers experienced by those living with CP through workshops and presentations to schools and community groups. In 2005, our presenter helped organize talks at Kwantlen College University, Vancouver Hospital Medical Advisory meeting, West Coast College of Massage Therapy, Simon Fraser Society for Community Living-Summer Recreation Program, Victoria Film and Video Festival and Para Educator Professional Development Day etc. Website: Our website provides general information about Cerebral Palsy and links people up with others both living with CP and those groups serving those with Cerebral Palsy. Since January, our website has received over 250,000 hits! ... Continued on Page 3

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CPABC Survey-Results in Brief

The board of the association is very appreciative of the work Peter Shipley has done on the membership survey. What follows is only a brief summary of the results. Members who would like more details are invited to contact the Association. The board will be using the information from the survey in upcoming Strategic Planning sessions. General The majority of the completed surveys were from supporting members who continue to have an interest in the Association who appreciated the opportunity to participate. This survey has just begun to uncover the com- position and demographics of the organization and it is clear that more work is needed. Demographics The Association is not fully represented throughout the province - under represented on Vancouver Island, the BC Rockies, Northern BC and Caribou/Chilcotin. Membership composition is heavily weighted as single origin Canadian with ethnic minorities almost absent from the membership. Adults with CP were the largest membership group and Parents of a child with CP were the second most represented group. Communication The effectiveness of the Associations communication to and from its membership was rated less as than effective. In preferences for communication, there was strong support for continuing with the mail-post but the membership also expressed an interest in utilizing alternative means Support/Networking was rated as one of the least accessed service and requiring change. Over all, the membership was less than satisfied with the Associations ability to provide services, supports and resources via its system for communication. Member Services There was a general lack of familiarity by the membership to the services available. 41%, did not receive any services from the Association and the most commonly accessed service was the Newsletter. For frequency of use, all services were rated as rare. The Newsletter continued to receive the greatest support as most useful. Satisfaction of core services were low to moderate, apart from the Newsletter, and Information/ Publications and Educational Resources were in the satisfied range. Support/Networking and Advocacy were rated the least support/usefulness. Regarding, reasons for utilizing/accessing services, the most popular was the Specialization in CP, followed by support for the Content and the Range of services. Numerous barriers to accessing services were cited including the office location, the system for communicating to/from the members and the relevance of services. The most appreciated aspect of the delivery of services was cost followed by availability and variety. Feedback recommending change indicated Networking/Support should receive the greatest attention while improved quality and a greater specialization of services were also suggested.

Revised Mission The majority of the membership were unfamiliar with the newly revised mission. Regarding the Associations fulfillment of mission, only 1/3 of the responses were positive. Other Services, Supports, Resources It is understood that the Association cannot meet all the needs of its membership. Services required but not being met include: Educational Support, Emotional Support, Financial Assistance/support and Social Support/ Assistance. A number of services stood out as important: Financial Assistance/Support, Social Support/ Recreation, Educational Support are in demand by the membership.

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Continued from Page 1 What Has Your Association Been Up To? Roundtable: Our Roundtable Newsletter is available to all members of the Association. It is produced on a quarterly basis to keep members up to date as to what is going on in the Association and the larger disability community. It goes out to over 906 members and other Community Partners. Enquiry CP: Our North American toll-free number for parent and individual support, information, resources, and referrals. Educational Bursaries: Since 2005, Bursary Committee has been revamping new bursary conditions; we will be offering 3 scholarships at $1,000 each in early 2006.

Did you know? Our organization is 51 years old. It was begun in February 1954 by a concerned group of parmembers are added to this number, it means that there are over 36000 people in our province whose lives are directly touched by Cerebral Palsy. Did you know? We receive requests for information from as far away as Germany, Sweden and Mexico, Bulgaria, Macedonia and the US. Did you know? We get MANY requests for work placements from students including students living with disabilities from Kwantlen, Capilano, and Douglas College and high schools. Did you know? We run our organization with one staff person. Feri Dehdar, our Office Manager, provides our office and Board members support, directs volunteers and manages fundraising. Did you know? We participated in studies and research on neurological disease, disorders, and injuries in Canada in 2005. The Canadian Institute for Health Information (CIHI) and the Canadian Brain and Nerve Health Coalition (CBANHC), in collaboration with voluntary health organizations (such as the Cerebral Palsy Association of BC), are conducting a study on the economic and social impacts of conditions such as CP on Canadian society. This study is groundbreaking, as no comprehensive statistics exist in Canada on these impacts. The Cerebral Palsy Association of BC provided the chapter in the study that describes the signs and symptoms of CP.

Did you know? We provide services to about 12,000 people living with CP in British Columbia. When family

ents of children with CP. Today we have a membership of 906.

As you can see, your association has been very active in 2005. We can always use additional funds to continue our services. Think of us as you draw up your Christmas list. Any size donation allows us to purchase books, print our new updated manuals and booklet, maintain our toll free inquiry line, and maintain our other services. Please see the donation form on the last page.
have children with Cerebral Palsy to ensure that therapies are supplied and the costs covered by basic MSP. Today many children are not getting adequate physiotherapy, or other non-invasive therapy to keep them out of surgery and avoiding surgery should be the 1st priority. All and all a good talk - although a bit scary. We know as parents that we shouldn't be complacent just because Cerebral Palsy is treated as a medical condition because over-treatment with the wrong plan can be worse than doing nothing at all. Dr. Mulpuri has given parents in particular, but also everyone who is connected to the Cerebral Palsy community, a call to action to make therapy and services for people with CP a priority in the medical community.
Dr. Mulpuri is currently a Clinical Instructor in Pediatric Orthopaedics, Department of Orthopaedics, University of British Columbia. Dr. Mulpuri has recently completed an MSc in Epidemiology at the University of British Columbia. He is involved in a wide range of research projects in paediatric orthopaedics. He is most interested in studying the clinical outcomes of orthopaedic treatment so that improvements in treatments and the results of the treatments will continue to be made. Dr. Mulpuri also studies problems with gait (walking) associated with neuromuscular disorders and of unknown origin. Abnormalities and diseases of hip are also one of his research focuses. For more information please visit: http://www.orthosurgery.ubc.ca/faculty_bios/mulpuri.html

By Carol Stinson

The speaker this year at the AGM was Dr. Kishore Mulpuri. I have always thought that I was a well-informed parent so I was pleasantly surprised when he had quite a few new things to tell me. As well, he confirmed some things that I had suspected - but had never confirmed. For example, he suggested that there has been too much reliance on surgery for children - and not enough time spent on physical exercise and therapy. The medical profession has found that children do not tolerate repeated surgeries well, especially on their muscles. Surgery tends to weaken muscles and children may become dependent on wheelchairs when they could have been walking. He suggested that kids should have surgery put off as long as possible using all the therapies available. Today non-invasive therapy also includes Botox and there is good news about this therapy as well. Botox can safely be used repeatedly over a long period of time with no ill effects. Dr Mulpuri also expressed concern that there is not enough advocacy and lobbying being done by parents who

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FALL 2005

NEWS...SITES...NEWS...SITES...NEWS...SITES...NEWS...SITES...
Need a fun and easy way to get in better health?

By George Pope

Laughter Yoga may be for you! Started by a doctor who knew that laughter had medicinal benefits, then matched to yoga breathing techniques, Laughter Yoga is the fun way to help beat depression, pain, insomnia, and loneliness, while boosting immunity, and reducing stress! There's a Laughter Club near you, or soon will be! Look up your city at http://www.laughteryoga.org Most clubs meet weekly, and there's about a $5.00 drop-in fee (to cover rent for facilities) -- generally your first session or two are free, so you can see if it works for you. I've been a part of the Burnaby club since August 2005, and have been quite impressed with it -- it's a good outing once a week, and it does help my mood and my sleep. The premise is laughing for no reason at all (it's not about jokes, comedy, etc., which can all get boring/old really quick -- Laughter Yoga uses Yoga breathing techniques, plus some "silliness exercises" to set the stage/mood -- by the end of the meeting we just sit down and let 'er rip/roar for about ten minutes (laughter is an aerobic exercise, so too much sustained level isn't healthy, luckily the group coordinator/leader has been trained in how to lead the group for the most effective time possible for all! So check out http://www.laughteryoga.org and see if laughing your way to longer, happier, healthier living is for you!

The Voyage Together

The Family Focus Society and the Richmond Society for Community Living are pleased to announce the dates of the Family Focus Conference will be October 20, 21 and 22, 2006. The 2006 conference will take place at the Best Western Richmond Hotel and Conference Centre. Since October 20, 2006 will be a Provincial Professional Development Day, there will be a Pre-Conference Day on that date focusing on Inclusive Education. http://www.familyfocusconference.com/ index.html

SKI VOLUNTEERS NEEDED

Are you interested in becoming a ski instructor and working with children with disabilities?
The Cerebral Palsy Program of Vancouver Adaptive Snow Sports (www.vass.ca) is looking for skiers who are willing to volunteer their time for a fun and fulfilling experience. We are looking to help as many children as possible to experience the joy of skiing and personal achievement, but need as many volunteers as possible. You do not need to be an instructor as long as you are an intermediate level skier. We will train you in the latest ski instruction techniques and will also provide ski improvement lessons. The program takes place starting January 29th, 2006 on Grouse Mountain and operates from 12 noon to 2 pm for 5 consecutive Sundays. If you are interested in volunteering or know someone that would be, please contact Brett Sanders at 604-873-6300 or [email protected]

Support the CPABC! Play Bingo at Boardwalk Gaming Centre

Sunday, January 22, 2006

Middlegate Mall Unit 3-7155 Kingsway Burnaby

For more information visit www.lmcharities.org

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Be cautious with your donations!

Its a perennial problem that doesnt seem to go away. One of the most frustrating things we have to deal with at the CPABC is people who fundraise using our name in the community. They go door-todoor, shake cans in front of liquor stores, beg on street corners, harangue folks on the phone and generally make a nuisance of themselves. A week doesnt go by when we are not called by someone complaining about aggressive fundraisers. We would like everyone to know that we never have, and never will take part in any of these types of fund raising activities. If you are ever approached by someone raising funds for little children with cerebral palsy dont hand over any money! You should tell the person you would like to find out some more information and get an address where you can mail a donation. Then you can inquire with the Better Business Bureau to find out if the charity is legitimate or not.

Caregiver Online Consultation

Earlier this summer, Canadians were invited to help share perspectives on Canada's social well-being with the launch of Social Development Canada's Public Involvement website. The first topic to be consulted on was unpaid/family caregiving, and over the next several months other issues will be explored. The purpose of these online consultations is to provide you with an opportunity to express your views and share your ideas on key social issues. Social Development Canada is committed to developing a strategy to meet the unique needs of these Canadians. We would like your insight into the situation today, as well as suggestions on approaches for the future. There are two ways for you to participate in these consultations: 1. By sharing your stories and ideas 2. By completing a consultation workbook You may choose to complete one or both of these methods, at your convenience. Please note that your participation in this initiative is voluntary. You will be invited to register before you begin, but you also have the option of participating anonymously if you prefer. The current topics of consultation are: 1. Caregivers 2. Persons with disabilities 3. Seniors If you have any questions regarding the consultation or require additional assistance please visit www.sdc-dsc.gc.ca or call 1-800-622-6232. If you use a TTY, call 1-800-465-7735.

Bursary and Summer Employment Program for Students with Physical or Sensory Disabilities 2005-2006 Edition
The National Bank of Canada is proud to announce its 17th annual Bursary and Summer Employment Program for University and Cegep Students with Physical or Sensory Disabilities. Under this Program, the Bank awards two $2,000 bursaries together with a paid 12-week summer job for university students and one $1,000 bursary together with a paid 10-week summer job for Cegep students. This initiative reaffirms the Bank's commitment to being an employer of choice. In fact, the Bank makes a considerable effort to achieve workplace equity so that each qualified person can benefit from employment opportunities and from any accommodations needed to do his or her work. They are encouraged to apply online: www.nbc.ca/bursaries

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 Riley Park Community Centre West End Community Centre Dunbar Community Centre

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Presidents Word
Merry Christmas and/or Happy Holidays!
Where has this past year gone?? I hope that 2005 has treated you all well. This has been a good year for CPABC. I am very pleased at the attendance of our September 14, 2005 AGM. Dr. Mulpuri was our guest speaker and I hope that I am safe to say that he did not disappoint. I am also pleased to announce that we now have an eleven member Board of Directors, with seven returning and four new Directors. I have enjoyed working with them and I trust this will continue in 2006. Our parent support group continues to be strong. We have and continue to work with Ampertec with the development of a new computer software program that could significantly enhance the lives for people with disabilities. We have teamed up with an instructor and her students at Kwantlen College with the updating of our Putting the Puzzle Together resource booklet. We have begun discussions in completing our original commitment of being one of four sponsors of the Bridges program. This will ensure that our members will always have access to this empowering program. As we acknowledge and appreciate what we have accomplished in 2005, we are also looking ahead to 2006. Our biggest task will be moving our office to a new home. Our current lease expires on June 30, 2006 and this gives us the opportunity to be in premises that we all can be proud of. We will look forward to better serving you from our new location Stay tuned. I have attended various meetings/events on your behalf. To name a few: I attended the 411 Information & Referral Conference; meeting with a Director from the Ministry of Children and Families and a Translink event focusing on improving the Handidart system. I have also taken some professional development courses to aid in my ability to serve you as your President. I, on behalf of the Board of Directors, would like to wish you and your family all the best during the holiday season. Stay safe and have a Happy New Year. Your President, Craig Langston

C P A B C

CRAIG LANGSTON (President) Burnaby LOUISE GAUDRY (Vice President) Burnaby CAROL STINSON (Treasurer) Burnaby TERREANE DERRICK (Secretary) Burnaby LIZ CALDER Fort St. John MEGAN MADDIGAN Surrey JONN OLLDYM Vancouver DON RENAUD Burnaby PETER SHIPLEY White Rock KENT LOFTSGARD Vancouver TONY KRUSE Burnaby

D I R E C T O R S

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The Incidence of Cerebral Palsy in British Columbia, 1991-1995

Cerebral palsy (CP) is considered to be the most common, most disabling chronic childhood disorder affecting approximately 2-3 per 1000 live births worldwide.1 However, the incidence of Cerebral Palsy was not known in British Columbia until recently when a graduate student at the University of Northern British Columbia, Les Smith, measured the incidence of CP during the years 1991-1995 in his research-based thesis. Mr. Smith based his study on the work of Robertson et al. (1998)2 who linked physicians billing codes and hospital separations with the diagnostic code for CP in Alberta. In British Columbia, the information required for this study is housed at the British Columbia Linked Health Database at UBC. This research was able to measure the incidence of Cerebral Palsy occurring at birth in the years 1991-1995 to be 2.57cases per 1000 live births. The combined incidence of CP occurring due to acquired causes and at birth was measured at 2.68 cases per 1000 live births. During this 4-year period, 497 children in BC were diagnosed with CP. This research was made possible through a grant from the Vancouver Foundation. References: 1. Surveillance of Cerebral Palsy in Europe (2000) Surveillance of Cerebral Palsy in Europe: a collaboration of cerebral palsy surveys and registers. Developmental Medicine and Child Neurology, 42: 816-824. 2. Robertson, C. M. T., Svenson, L. W., and Joffres, M. R. (1998) Prevalence of cerebral palsy in Alberta. Canadian Journal of Neurological Sciences, 25: 117-122.

Thanks to our on going volunteers .... Regina Bandong Tony Kruse Mike Stevens Patricia Furdek Ron Wyant Marianne Powley Pamela Liu Ronald Lee Maggie Prentice Wesley Kong

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OUT AND ABOUT WITH TAMMY

Monthly Focus Disability Network Society Meeting
By Dianna Plourde
September and October were busy months for Tammy van der Kamp in her role as CPABC Spokesperson. On September 26th, Tammy attended the Focus Disability Network Societys meeting. The FDNS has been operating since 1997, providing opportunities forservice providers to develop working partnerships and promote interconnectedness between those working with persons with disabilities. While FDNS has focused primarily on employment issues, there is a growing awareness of the need for inclusion in many other areas, such as recreation, housing, and transportation. The purpose of FDNS meetings is to discuss and share disability-related information and resources, and learn of strategic government initiatives. These monthly networking sessions have also afforded opportunities for professional development. Septembers FDNS meeting brought together a wide variety of organizations and services, with Tammy van der Kamp in attendance as CPABC s representative. Thank you, Tammy!

Southpointe Academy: Mrs. Laings Grade Six Class

Also in September, Tammy gave an awareness-raising presentation to a Grade Six class at Southpointe Academy in Delta. This very successful session began with a discussion of the novel Petey, by Ben Mikaelsen, about a boy with CP living in the 1940s, a time when people with disabilities were often institutionalized, and nearly always excluded from anything like a normal life. The presentation included empathy-building games where the kids were variously tied up, hobbled, blindfolded, and otherwise physically inhibited for a short time, and wound up with a lively question and answer period. Here is some excerpts from the kids thank-you notes: Now I dont feel as shy about people that are disabled and I dont feel mad at myself for wanting to ask questions. Mark Your speech made it easier for me to be around physically or mentally disabled people. Anita It was fun when you let us be disabled, but it would be hard to be like that for a long time. Derek Whenever I pass someone that is disabled I used to have a weird feeling when you talked about people with disabilities all my answers for my questions were found Aaron My favorite part of your presentation was when you told us that you charged twenty-five cents to ride on your elevator to all your friends. Eric Your story has changed the way I see disabled people. Mary I liked it when you made it like we had disabilities. It made me realize that having a disability is difficult. Jolene I have now learned not to judge a person by what they look like. Pauline A classroom full of self-absorbed eleven-year-olds has become a group of kids who will perhaps think twice before applying their prejudices first!

On October 24th and 25th, Tammy attended the 2005 Canadian Community Information and Referral Conference, hosted at Granville Island by Information Services Vancouver. At the Conference, attendees were introduced to the proposed BC 211 Initiative. The BC 211 Initiative will be part of a nation wide, free information and referral network, aimed at providing access to nonemergency social and health organizations. This service will be invaluable for anyone who finds himself in a non-emergency situation which nevertheless requires some answers or action, for example, a college student needing to access employment programs, or a parent whose child has recently been diagnosed with CP. They would subsequently be referred to the most appropriate agency. Province-wide implementation of the 211 system is anticipated for sometime in 2010. For more information see http://bc211.vcn.bc.ca

BC 211 Initiatives

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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, Tammy van der Kamp, 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: [email protected] 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