CPABC Roundtable Fall 2008

7/28/2019 CPABC Roundtable Fall 2008

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Parents

GeneralInterest

CPABC newsews

the

C e r e b r a l P a l s y As s o c i a t i o n o f B r i t i s h C o l u m b i a f a l l 2 0 0

Merry Christmas and/or Happy Holidays!

We are coming close to the end of 2008 andnearly 15 months away from the Olympicsand Para-Olympics. What an opportunitythis is for all British Columbians, includingus. Here is a question that I think is worthsome discussion: What mark do we as anorganization and as individuals want toleave as a result of BC hosting the Games?I welcome your comments.Our Board of Directors continues to moveforward with CPABCs long range strategic

plan and we remain committed to the samepriorities:

Build on Knowledge stay currentwith research, medical information andtechnology that impact people with cerebralpalsy Ensure that our lending librarystays current balancing this with the factthat most information can now be foundonline via the Internet

Words from the

President

Communication is to remain atop priority hire additional staff thatspecialize in public relations and relatedcompetences. Continue to offer our RoundtableNewsletter, with its new look, on a quarterlybasis Increase funding to our EducationBursary Fund - offer more money to morestudents with CP Acquire the necessary technologyand equipment needed to make thesepriorities achievable Acquire additional resources tocontinue with pursuing advocacy initiatives this could include establishing supportgroups for our members

Jim Watson continues to assist Feri Dehdar,

our Director of Programs and Administration,and myself with contacting and meetingdonors and potential donors. Jim led theway to the great success in the building upof funds in the Tanabe Education BursaryFund.Through our affiliation with the UnitedCerebral Palsy, we are better able to staycurrent on new advances in research,medical information and technology thatwill benefit children and adults with CP.It is with great pride to again acknowledge

that in the summer of 2008, CPABC revithe campership fund. We had the pleasof sending kids with CP to summer camof their choice.CPABC continues to be involved wrepresentation of Board members to Provincial Equipment & Assistive DevCommittee and the Emergency Plannand Preparedness Initiatives.All of this is a great start and there is mmore to be done. Our fundraising tarremains at $350,000. We raised close$75,000 leaving us with a challengeapprox. $275,000. We need you as memband we need you as donors.I acknowledge that for many this Christmseason will be a bit leaner with peothinking twice about their expenses. I ask that you continue, increase, or star

include CPABC in your Christmas/Seasodonations. Consider a commitment making regular monthly contributioEvery dollar every cent will get us cloto reaching our goals. What can ycontribute??I, on behalf of the Board of Directors, wolike to wish you and your family all the bduring the holiday season. Stay safe ahave a Happy New Year.

Your President,

Craig Langston


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CPABC news fall 20

What has the CPABC

been up to?The Cerebral Palsy Association of BC (CPABC)is a charitable organization, established

in 1954, thanks to a group of concernedparents who wanted the best possibleopportunities for their children living withCerebral Palsy. Today we provide support,education and information to over 36,000people living with CP and their familiesas well as education and information toprofessionals, students, organizations andcommunity groups.

As the Knowledge Centre for Cerebral

Palsy we offer the following services:

Family and Individual Support: Our part-time support worker is an information andreferral specialist who connects and supportspeople living with CP with programsand services. In thelast year, Tammy vander Kamp handledover 227 inquires frombasic information on CP tocomplex medical questions

for professionals.

Educational Bursaries: Theseare awarded twice a year to studentsliving with CP planning to pursue post-secondary education or attend institutionsof higher learning the following year.

The Guide to CP: This booklet is designed to bea general introduction for anyone interestedin Cerebral Palsy, such as parents, educators

and health professionals.

Living with CP: This manualoutlines the services availablein BC for those living with

this condition andhas been the long-time centerpiece of ourinformation services.

Putting the Puzzle Together:A manual for educatorsand para-educators onhow to include children with all typesof disabilities in the so-called regularclassroom, it is required reading for theKwantlen University College course for

community and classroom support workers.It is currently being revised in conjunctionwith Kwantlen College, Special EducationTeacher Assistance Program, and will beavailable soon in both print and electronic

format.

Library: Our library containsbooks and videosconcerning CerebralPalsy that are useful to

parents, professionals,and those living with CP.We acquired 7 new books

and 23 DVD this year and lentout many resources to British

Columbians. For a full listing of what isavailable for your use go to our website atwww.bccerebralpalsy.com

Speakers Bureau: This service raises publicawareness of Cerebral Palsy and works to

remove attitudinal barriers experiencedthose living with CP through workshand presentations to schools acommunity groups. In the past year, Tam

spoke to children from kindergar

through high school at more than different schools on topics ranging frinclusion to etiology, and from providthe motivation to succeed despchallenges to answering questi

about CP and the aging process. She apresented to college students at sevepost-secondary institutions and to staff aresidents at a long-term care facility. was also able to offer a glimpse of life frthe perspective of an adult woman witcareer who happens to work

from a wheelchair.

Research informationfrom UCP: Throughour affiliation withUnited CerebralPalsy, CPABC can access a weaof information on all aspects of CP apass it along to those who contact us information and support and to those wattend our presentations.

Bridges to the Future: This is a collaboratservice for youth aged 15 to 24 with and other physical disabilities andtheir families to ensuresuccessful transition toadulthood.(continued on page 3)

Thanks to a $2,500 grant, fromthe Hamber Foundation,our organization was able to help ten children realize theirdreams of attending a camp this summer. Read on forsome of their adventures in the sun

Charlotte Heine attended Byte Camp, in Parksville withher sister Sarah, where they took part in a week long

claymation course.

Charlotte writes, Thank you for letting come to Byte Camp. I know that it cost of money. We had to put a lot of effort (camp) but it was very fun because we gomake movies. And then there was the maof animating (our movie). We had to do it motion at a time. We also added sound it was very interesting. You can view the gvideo at www.my.bytecamp.ca/claymatio click on Sarah and Charlotte.

Angel and Joudelie King attended a ca

Going to Camp was Fun!Thank you CP Association!

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the universitys medical and dencurricula.CPABC contributed $500 to Agur LCamp project. The camp will be uniqin BC providing fun, respite and suppfor children with special needs and thfamilies. For more information vwww.agurlakecamp.caTammy facilitates a teen group for Surrey School Board for teen girls whave chronic medical conditions.The CPABC has worked with MuscuDystrophy Canada to develop, deland evaluate their MuscleFacts scheducation program designed increase awareness and knowled

about inclusion for students w

disability.We receive requests

information from as far awayEngland, US, Australia, PakistIran, and the rest of Canada.

We operate organization with three part-t

staff persons: Feri Dehdar (DirectoPrograms and Administration), Tamvan der Kamp (Family and IndividSupport Worker) and Wendy Hawry(Administrative Assistant).

As you can see, the CPABC was very active in 20We can always use additional funds to continueservices. Think of us as you draw up your Christlist. Any size donation allows us to purchase boprint our booklet and updated manuals, maintaintoll-free inquiry line, and continue our other servPlease see the donation form on thelast page.

Thank you very muchfor your support!

called Moving to Higher Ground. Momwrites the following, Without your support,it would not have been possible for us tosend the children (to camp) and we feelblessed to have had the opportunity. It wasan amazing week filled with fun, crafts, andgames. Everyday when I picked the girls upthey would complain about having to comehome! On our 30 minutes drive there werenon-stop details about the fun they had andthe people they had met.

Hailey Miller attended Zajac Ranch. Her momwrites, We truly have peace of mind thatHaileys best interests are taken into accountat Zajac Ranch. The staff understand herdisability and Hailey is kept safe at all times.Some of the reasons that Hailey loves thiscamp and that she can go there and just bea kid. All of the campers get to participate inall of the activities regardless of their level ofability, which means Hailey is never left on thesidelines watching others have fun.

Alyssa Choinicki has attended Sassamat cafor the past two summers. She has had opportunity to go on hikes, canoe, kayak, pgames and make crafts. What impressed momthe most waswatching how kindthe other childrenwere to Alyssa. Thiscamp gave Alyssathe opportunityto feel just like a

regular kid.Page 3

(continued from page 2)

Website: Our websiteprovides general

information about

Cerebral Palsy and links peoplewith others living with this conditionand with groups supporting those with CP.Since January 2008 our website has receivedover 296,000 hits!

Roundtable: Our Roundtable Newslettergoes out to over 900 members and othercommunity partners. It is produced on aquarterly basis to keep members up to dateas to what is going on in the Associationand the larger disabled community.

Enquiry CP: Our North Americantoll-free number 1-800-663-0004 is used forparent and individual support, information,resources, and referrals.

For your information:

Our organization is 54 years old. Itbegan in February 1954 by a concerned

group of parents of children with CP.Today we have a membership of 900.We provide services to about 12,000people living with CP in BritishColumbia. Adding family members tothis number means that there are over36,000 people in our province whoselives are directly touched by CerebralPalsy. In addition, the 77 Infant andChild Development Centres, 1700public schools libraries and 70 public

libraries across BC regularly requestour literature and resource materials.Our office is an accessible space locatedin downtown Vancouver.The CPABC is like a tree. The CPcommunity is the roots and our CPservices make up the branches.Free copies of the revised Guide to CPbooklet are available on request anddownloadable from our website. Livingwith CP manual is available at no costto parents and those living with CP andstudents.In August 2008 the CPABC awardedseven bursaries at $1000each to seven students livingwith CP to assist with post-

secondary education.In August 2008, our Associationprovided 10 children with $2500to attend a special needs camp.Since 2006 the CPABC hasmaintained a strong and successfulpartnership with Muscular DystrophyCanada, BC Paraplegic and SpinaBifida to run Bridges to the FutureProgram, which provides supportto youth with physical disabilitiesdealing with the transition from

adolescence to adulthood.Michele Cohen and her group ofclimbers brought attention to theCPABC to a mountaintop in Nepal andwas instrumental in raising $2470 indonations for the Association.Tammy has been part of the MedicalDental Community Advisory Committeeat the UBC Faculty of Medicine,where she lends her expertise andprovides input on disability issues for


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Cerebral Palsy Association of BC - Tanabe Bursary Summer 2008

On The Road:Kinsmen in Kelowna

From left to right, Tammy (CPABC),Doug Robinson (National Kinsmen President)

and Josh Mclean (Aldergrove Kinsmen President)

What a pleasure it was to represent theCerebral Palsy Association of BC (CPABC)

at this years Kinsmen FoundationsAnnual General Meeting on October 19, inbeautiful Kelowna, BC.I was happy to speakto the assembled Kinsmen and Kinettesto acknowledge Kinsmen Foundationgenerosity. Thanks to Kinsmen FoundationChair Philip Jewell, and Chief ExecutiveOfficer Jim Watson, the CPABC s TanabeBursary program got a significant boost.This years Kinsmen Foundation contributionto our Bursary Program is most welcome.

Beginning in 2008, the Kinsmen FoundationPage 4

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CPABC news fall 20

This summer the Cerebral PalsyAssociation of BC was delighted to awardbursaries to the following individualswith CP:

Janelle ArmstrongMatthew D. FlintJulia Halipchuk

Stanley SipchenkoMellisa MarkinTara KowalskiEvan Bret Reid

They are each provided with a $1000bursary to aid them with their schooling.CPABC congratulates all the winners; we

are delighted to help young people with CPget ahead with theirlives through ourBursary Program.

Janelle Armstrong Julia Halipchuk Mellisa MarkStanley Sipchenko Matthew D. Flint

Educational Bursaries - Winter 2009The Cerebral Palsy Association is pleased to announce that we will be offering thirteenbursaries of $1,000 each in January 2009. Applicants must be 18 or older, have CP an

plan to attend an institution of higher learning the following year.Application deadline is December 19, 2008.

For full details call our office at 604-408-9484, toll free 1-800-663-0004or go to www.bccerebralpalsy.com., click on Services then scroll down to Education

and click on Educational Bursaries.

has committed $50,000.00 dollars over fiveyears, to support our Tanabe Bursary. Thisrepresents a significant increase over pastyears. The actual Tanabe Bursary recipientsare probably the most grateful for Kinsmenssupport.

Julia Halipchuk from Princeton is studyingarchitecture at UBC. Stanley Sipchenkoof Hosmer is after a Computer Sciencedegree from the University of Lethbridge.Evan Reid, Mellisa Markin, Matt Flint, TaraKowalski and Janelle Armstrong are allable to pursue post secondary educationbecause of the Tanabe Bursary.These young people have already dealtwith significant challenges related to cp intheir lives. So we know they have what ittakes to go after a goal. They are our future

professionals, citizens, and leaders. Theyare also role models for people with cp andother disabilities.As a person with a disability, I know howdifficult it can be just managing the activitiesof daily living. Going after post-secondaryeducation can be a challenge even for peoplewithout disabilities so I was very happyto acknowledge the Kinsmen Foundationssupport of our Bursary program.The weather was lovely, too, for the most

part, which helped to make networking a

bit easier. I was able to meet with Les a CPABC Board Member who helped get together with other Kelowna agencLes set up a meeting for me with Peoin Motions Executive Director Paul ArnMr. Arney and I exchanged informat

about our respective organizations, ahe provided important Okanagan continformation. I also met with Arlene Pilga Rehab Consultant at BC ParapleAssociations Kelowna Regional OffArlene has been instrumental in providinvaluable assistance to CPABC clientsthe area. It was nice to finally put facenames formerly known only through emand telephone correspondence.On a personal note, it was nice to get of the city for a while, and visit with fam

and friends. Thanks are due to the KinsmFoundation not only for their philanthrobut also for taking the time to ensure tI was well taken care of during my sin Kelowna. Id also like to thank RobRaven for providing an accessible pit-stfor me, and a doggie play-date for PAService Dog Breeze, Jasmine Sherban excellent care in unusual circumstancand Dad Conrad van der Kamp for taktime away from work to provide his alw

good-natured chauffeuring skills.


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Mini-Miracles Childrens ClothingMini-Miracles is a BC company that produces quality clothing for children withspecial needs. Their clothing is produced with the following needs in mind:

-Limited range of motion and impaired dexterity-G-Tube feeding-Wheelchair use-Contractures-Toilet/changing needs-Catheters & Colostomy bags-IV tubes-Rigidity

For more information phone: 250-478-6331or visit www.minimiracles.ca to view a current catalogue.

Saturday Unlimited

VancouverYouth with and without disabilities have the opportuto socialize through a peer-support program dur

Saturday Unlimited. This unique program offers soand recreational opportunities for youth ages 13 Experienced staff, accessible vehicles and one-to-opeer volunteers maximize participation and a posiexperience within the program. Location: BritanCommunity Center, 1661 Napier Street, 10 am-3 Saturdays call 604-718-5800 to register.

Michele Cohen, an experienced mountain climber, Vancouver resident, and travelprofessional led an entourage of 14 climbers to the 6400 meter summit of Mera Peak,in Nepal, from October 19 to November 10, 2008. Her challenge was to get her groupsafely up Mera Peak and back down again. They faced the demands of trekking at

high altitudes in the Himalayas and camping in sub-zero temperatures for 17 days.But Micheles thoughts and efforts were not only focused on herself and the safetyof her climbers. She was capitalizing on her experience to help raise money and bringawareness to worthwhile causes such as Cerebral Palsy.The Cerebral Palsy Association of BC recognizes Michele Cohen and her crewsamazing effort in bringing attention to the summit of Nepal and being influential inraising $2470 in donations for the Association. Way to go Michele!

Cerebral Palsy Association of BC in Nepal!

CPABC & United Cerebral Palsy (UCIn June of 2008, the CPABC became an offiinternational affiliate of United Cerebral Palsy (UC

UCP was founded by parents in 1949. It has bcommitted for more than 55 years to change aprogress for people with disabilities. UCP become a strong force in advocacy. Its network

affiliates, both across the United States ainternationally, strives to ensure inclusion persons with disabilities in every facet of socifrom classroom to community, from the Web the workplace. UCPs mission, to advance independence, productivity, and full citizensof people with disabilities, dovetails nicwith our own.

As a UCP affiliate, CPABC stands to gain practbenefits such as supports with respect to fundraismarketing and communications, best practic

and programmatic support. CPABCs memband Community Partners will have access UCPs resources. We also stand to benefit from considerable name-brand recognition and knowledbase resources associated with UCP. Please contTammy van der Kamp at 604-408-9484 if you hany questions or to access UCP resources.

CPABC anticipates its relationship with UniCerebral Palsy maturing to one that is mutubeneficial, which ultimately supports those touchby cp in British Columbia.


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general interest fall 20

Reaching New HeightsFor sixteen years, it has been a SeycoveSchool tradition that Ryan Earls Geography12 classes will hike to the Black Tusk areato see the work of glaciers and volcanoes

first-hand. It is an event full of challenge;with an 8km climb carrying a full pack, anda cold, possibly wet and snowy night in atent. Perhaps because of the shared effortand discomforts, as much as for the scenery,

it is among the most memorable events ofthe grade 12 year. This year may have beenthe most memorable of all. Three years ago,as we were preparing for the trip, a grade 9student asked if Black Tusk was wheelchairaccessible. Cerebral Palsy had kept him

from walking, but it had not dampened

Low Fee Counselling Services

VancouverLiving Systems Counselling o

professional counselling on a slidingscale. Fees range from $15 to $120session depending on gross family incbefore taxes. They have offices onNorth Shore and throughout VancouWaiting lists are usually minimal flexible appointment times. Theyfunded by the gaming commisand North Shore and city of Vancogrants. Phone 604-926-5496 for minformation.

Shayne DeWildts desire to participate.He was well knownaround the schooland community,fearlessly piloting

his power chair in allweather. His questionabout Black Tusk mayhave seemed nave,but it reflected hisdetermination totry new things, andto be a part of asmany activities as theschool could offer.Then this past springCraig Johnston, a

Special EducationAide who has beenan integral part ofthis trip every year, heard about a newkind of wheelchair especially designed tohandle rough terrain. Two local agencies,Interfit and the Disabilities Foundation,were making these chairs available in orderto increase access to the outdoors. Shaynedecided to give it a try, and went on a coupleof short hikes organized by Interfit on North

Shore trails. He loved the experience, and

suddenly we at Seycove began to wonif Black Tusk could be wheelchair accessafter all.It was. Propelled by his own determinatand the collective muscle of his fifty Seycclassmates, Shayne was able to experiethe wild mountains, the glaciers and cincones, the turquoise lakes, and the joy

a remarkable group achievement. Sittat 7000 ft, watching the marmots awhiskyjacks, he said, This is so cool! was so right.

Ryan Earl and Craig Johnston

parents

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Break through the silencesolutions for those who cant speakSpeech disabilities can be caused by a variety of conditions including cerebral palsy.Approximately eight out of every 100 people are unable to use speech as their primarymeans of communication. About 94% of those do not get access to assistive speechtechnology because they do not know it exists.

Voice for living is an information resource exchange where you can discover

how an array of tools and techniques, including augmentative and alternativecommunication (AAC) devices, can open a whole new world of possibilities for thosewho cant speak.

Voice offers a number of online services where people can share ideas and support oneanother. Members of the Voice community can have their speech questions answeredby speech-language pathologists through Ask the Expert. Information can be accessedon the latest technology and success stories heard. Live chats and interactive presen-tations by augmented communicators, clinical experts and special educators are alsoavailable. Go to www.voiceforliving.com to sign up for your free membership and startaccessing these services today.


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Why not come out and join the Disabled

Independent Gardeners Association (DIGA)for two interesting upcoming workshops.

Bromelaids as House PlantsSaturday, Jan 17 1:00 2:30 pmIn gym of GF Strong Rehab Centre, 4255Laurel Street, VancouverCost $5, parking is free in visitors parkinglotDont know what a Bromelaid is? Dontworry about it. William Bischoff will in-troduce you to five that are best suited for

Massage why not?613 Columbia St., New Westminter

Reduce your stress level and spasticityIncrease your range of motion andcirculation. FEEL GOOD! AhhhWestCoast college of Massage Therapy isoffering Thursday evening treatments,for $12, for those with cerebral palsy.Call 604-520-1830 to reserve your timPlease mention that you are booking inthe Cerebral Palsy Clinic.

To register for either lecture phoneBetty at 604-688-6464, ext. 106 or [email protected]

Speaking Through Art

A.J. Brown started to explore various art1999 as a way to overcome personal feShe had a brain injury during birth tcaused her to become Deaf and to havcondition that resembles Cerebral Palsy. Aresult, she has difficulty speaking and ussign language. She uses a Lightwriterportable communication device from which speaks for her when she types words in written English.You can see some of her artonline at

www.handsandpurrs.ca.(Article reprinted withpermission frombalance October 2008newsletter a publication of BC AssociationIndividualized Technology and Supports People with Disabilities (BCITS).

house and window culture. Enjoy a slideshow and plant samples.

Travels of a Modern Plant Hunter

Monday, February 9 12:00 noon 1:15pmReception centre at the UBC BotanicalGarden, 6804 SW marine Drive NW ofthe intersection of 16th Ave.Cost $5, parking is freeRon Long, a well known photographerand plant enthusiast will talk about his2008 travels in search of new plants andwildflowers. Ron will share his impressivecollection from his hunting trips with a

slide show.

The Underwater World Awaits!VancouverThe Pacific Scuba Diving Challenge Clubwas founded by Ron Stead about 20 yearsago. Its purpose was to get those with dis-

abilities involved in scuba diving. Monthlymeetings are held at GF Strong in Van-couver. There are also pool sessions, boatdives and barbecue day trips.Marc has been teaching diving to thosewith physical disabilities for 15 years. Hesays, Anybody can learn from us. So do you want to take the plunge and givescuba diving a try? Give Marc a call at604-432-6636 or 604-777-5244.

Winter Blues? Love Plants?Vancouver area


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the

Cerebral Palsy Association of British Colu

801-409 Granville St.Vancouver, BC V6C 1T2

Phone: 604.408.9484Toll-Free (Enquiry CP): 1.800.663.0004

Fax: 604.408.9489

Email: [email protected]

Office Hrs: 9 AM to 5PM, Monday to Thu

Membership fee: $20

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Nowmore than ever before

your membershipwill help to

Become a member today!

the

Cerebral Palsy Association of British Columbia fall 20

Please recycle this

Roundtable by passing

it along to someone else!

CPABC Board Members

CPABC Sta f f

CRAIG LANGSTONTRISH MCKAYJONN OLLDYMDON RENAUDTONY KRUSE

KENT LOFTSGARDRONALDBLACKMORE

LIZCALDERLES EBL

TERREANE DERRICK

PresidentVice President

TreasurerSecretary

FERI DEHDAR

TAMMY VAN DER KAMP

WENDY HAWRYZKI

Director of

Programs &Administration

Family&IndividualSupport Work

AdministrativeAssistant

T r a n s l i n k

fails?!!!Do you, or someone you care for, use amobility device and use public transit?Have you had problems with wheelchairlifts not working, drivers not wanting totake the time to load you or not wanting tostrap your wheelchair down?We want to hear from you.We believe that Translinkneeds to be more accessiblefor the disabled.

After all this isa public transitsystem. We allpay for it.

There is a youngman in Port Moodythat has only made ithome from school threetimes since the beman hascalled his parents more timesthen they care to count tocome and pick him up at theside of the road. Translink inthis case has not followedpolicy nor does it appear thatthey intend to.

Tell us your story/stories [email protected]

Documents

CPABC Roundtable Fall 2008