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
Spring 2006

Things Are Really Moving at the CPABC!

By Louise Gaudry Vice President-CPABC

Inside this issue:

Things Are Really Moving at CPABC! State Planning CPABC Bursary News & Sites 2

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At its March 2006 meeting the Board of Directors of the Cerebral Palsy Association of BC voted to proceed with the signing of a lease agreement for new office space. Our new office will be in the United Kingdom building, located in the business district of downtown Vancouver. A short distance from waterfront sky train station, this new location provides the same closeness to accessible public transit that the CPABC currently enjoys, but offers additional accessibility features not presently had. Accessible washrooms and other facilities, as well as increased wheelchair maneuverability within the CPABC office space itself, naturally reflects the Association's commitment to equal access for all. In addition, increased access means that Tammy van der Kamp, CPABCs staff person who handles our request for information, calls will finally be able to join us on-site. Presently, Tammy has been forced to handle these requests from her home because our current office space is in-accessible to her. We are also pleased to report that funding has been secured to provide Tammy with a fully equipped accessible workstation for use in our new home. Besides an adjustable table, this funding also provides for the computer and software necessary to meet Tammys on-the-job needs. Many thanks to WCB Helping Hands for its generous support in the provision of this equipment. Thanks is also in order for CPABC Board member Don Renaud for his leadership in securing the lease for our new location. We take possession of our new office effective May 1st 2006, but our move will be a gradual one as we will not officially leave our present location until

Power To Be Inclusion Strategic Planning Committee-Chairs Word Membership & Donation form Info

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Check us out on the web at

www.bccerebralpalsy.com

June 30, 2006.

As of June 30, 2006 our new contact information will be:

Cerebral Palsy Association of BC 801-409 Granville Street Vancouver, BC V6C 1T2 ...Continued on Page 2

Thank you For reading The Roundtable.

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Continued from Page 1 Things are really moving at CPABC!

Other office news includes the hiring Wendy Hawryzki who joined CPABC staff on a part-time, contract basis in January at 2006. Wendy works two days a week and provides support to our Office Manager Feri Dehdar in the completion of the many duties involved in the efficient running our office. She also provides administrative assistance to Tammy. Welcome Wendy!

to British Columbia. Free copies of the Guide to CP will be available on request and, downloadable from our web site. Living with CP, will be available at no cost to parents and those living with CP. Professionals and other community members will be asked to make a donation of $10 per copy. Monies collected will be used to fund additional printing of CPABC materials.

Bridges to the Future

So what else has been going on?

Updating Our Publications

The revisions to the Guide to CP and Living with the CP are nearing completion and will be going to press by May 2006. Watch your newsletter and our web site for an announcement of when actual printed copies will be available for request. The Guide will also be made available on-line. Translations of the Guide are also underway. At the moment French and Spanish additions are being worked on and will be made available in PDF format on our web site. Recognizing the cultural diversity reflected both in the cerebral palsy and larger Canadian community, the CPABC is eager to hear from those able to offer their linguistic skills to translate this valuable resource in additional languages. If you, or someone you know, would be interested in taking on this challenge please give us a call! We would love to be able to make this information available in as many languages as possible, including Cantonese and Punjabi. The Board would like to take this opportunity to say a big thank you to graphic designer, Randy Snyder for the gracious donation of his time and talents in designing the covers for both the Guide and Living with CP. Randy also assisted with perfecting of layout for these booklets. What is the difference between the Guide to CP and Living with CP? The Guide to CP is an excellent introduction to cerebral palsy useful to parents, professionals, students or those living with CP. Living with CP is larger document containing the Guide to CP, but with expanded content on emotional impact upon the family and navigating the educational system. Living with CP also offers a community resource section specific

The Cerebral Palsy Association of BC is pleased to be able to report that as of April 1 2006, we are now a financially supporting partner of the Bridges to the Future program. Previously, the CPABC has supported this program through participation on the steering committee via Tammy van der Kamp; however, because up to one-third of the programs participants are those living with CP, we felt it was time to do more. Tammy will continue to serve on the steering committee. Bridges to the Future services youth with disabilities between the ages of 15-24 across BC. The program is headed by The Muscular Dystrophy Association of BC. Other partners include the BC Paraplegic Association and the Spina Bifida Association of BC.

Scholarships

Scholarships will once again be available to those living with CP, pursuing postsecondary education. Priority will be given to those not eligible for other sources of educational funding, but all applications will be considered. Application forms are now available on our web site or can be requested from the office. Monies will be awarded in time for the September school year. Three scholarships of $1000 will be awarded.

Advocacy

CPABC President Craig Langston has recently been asked to join an inter-disability agency committee working with the Ministry on addressing the equipment needs of those with disabilities. We are pleased to be able to add Craig's voice to this important discussion.

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By: Halldor K. Bjarnason

Is your child, sibling, or other relative one of the approximately 20,000 British Columbians receiving Disability Assistance the provincial governments support program for people with disabilities? If so, your failure to properly prepare your will may seriously affect their ability to continue to receive assistance! For people with significant disabilities (disabilities that render a person unable to hold employment) who depend on small disability pensions to survive, receiving a modest bequest from aging parents can mean the loss of the pension - often the persons only means of support. This leads to anguish and, ironically, even greater poverty. Disability pensions in British Columbia are means-tested, making them conditional on the recipient having few liquid assets. In British Columbia, if a person receiving Disability Assistance has more than $3000 in assets (with a few exceptions, such as a car, a principle residence, and a $5000 limit, plus $500 for each additional dependent, in the case of the recipient having dependents), they become ineligible for Disability Assistance. There are also rules about receiving unearned income when on Disability Assistance. However, both Canadian law and BCs Employment and Assistance Act for People with Disabilities provide exceptions to these rules if the funds are held in trust. A trust is an arrangement where a person (the trustee) holds the money for the exclusive use or benefit of another (the beneficiary). Courts in Canada have determined that money held in a discretionary trust (called a Supplemental Needs Trust in the United States) for a person with a disability does not affect a persons ability to receive their Assistance. In BC, if the funds from the trust are used to cover certain disability and living related expenses, without providing a cash income, they will have no impact on the beneficiarys continued receipt of Disability Assistance. As a result, it is crucial, when giving a bequest to a person receiving Disability Assistance, to plan your will so that their share flows into a discretionary trust. While there are ways to resolve the problem if a person making a will forgets to place their disabled beneficiarys share in a trust, these can be both expensive and stressful on the disabled beneficiary. For more information on this important topic, visit www.trustlawyers.ca, or call Halldor Bjarnason at 604.697.0231.

Cerebral Palsy Association of BC Tanabe Bursary

The Cerebral Palsy Association of BC proudly offers three bursaries of $1,000 each, to any eligible student 18 years and older, with CP, that is planning to attend an institution of higher learning in the following year. Please advise any students, with Cerebral Palsy, of the availability of these funds and note that even if a student has been awarded monies through this fund before, they are still eligible to apply. You may check the criteria by visiting www.bccerebralpalsy.com/services.htm Applications must be postmarked no later than June 15th, 2006. Students need to submit a cover letter with their bursary application including name, address, phone number and email address (if available). You may mail, fax or email you application to CPABC attention Bursary Committee. Contact Feri at 604.515.9455 if you have any questions.

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NEWS...SITES...NEWS...SITES...NEWS...SITES...NEWS...SITES...
Boat for Hope
Pirate captains, for the 8th annual Boat for Hope, are looking for shipmates between the ages of 6 & 14 each to be accompanied by one adult. Brave pirates can sign on to search the waters of False Creek for hidden treasure. The adventure will begin at the Royal Vancouver Yacht Club (3811 Point Grey Road) on Saturday June 10, 2006. To register or to receive more information please phone Vaiety to talk to Tara Berdej@ at 604.268.3886 or visit www.variety.bc.ca

Overcoming Your Stutter

Most people develop a stutter between the ages of two to four. Stuttering affects nearly five times as many men compared to women, and it is said that one per cent of the population stutters or used to stutter. People who stutter often keep their answers short when asked questions and tend to stick to themselves because they feel self-conscious. They may also become shy and have problems using telephones and speaking in public. It is possible to take control of your stuttering and to feel confident to talk at school, work and with friends, without having to pick and choose words that come easily. Help is available with Vancouver-based speech-language pathologists at Columbia Speech and Language Services. The Intensive Stuttering Clinic offers people the tools to be fluent most of the time. The group program includes a pretreatment assessment, ten days of intensive treatment, a completer weekend and a five-year follow up, for a cost of $3000. Is it worth it? Past client of the program, Judy, loved the course and has only good to say about it. Her enthusiasm for the clinic is contagious. I really want people to go so they will get better. I would yell it from the rooftops if I could. I wish I had known about the course sooner. Judy, who has Cerebral Palsy, stuttered for over 30 years before she heard about the clinic. At work one day a client phoned up to enquire about an airbrake course. I stuttered my way through the information. The guy asked me, Do you do that all the time? Yes, I replied. He then started speaking to Judy with a stutter passing on the information about the upcoming clinic. The client made me mad enough to want to do something about my stutter., said Judy. She looked up the information on Columbia Speech and Language Services, signed up and met her client, a fellow student, on the first day of classes. Judy considers the course a blessing because it has changed her life so much. She said her self-confidence has soared. Its hard work-nine days out of your life and two to three hours of homework a night. You have no social life; your focus and life is the course. There is no weaseling out, no refunds, rules are tight. You must be committed to the program and to fellow students., says Judy. Judys stutter is 100% gone, but she attributes that to her daily practice sessions. Every morning before speaking with anyone, she spends 10 15 minutes practicing speaking under 60 syllables a minutes. She knows that if she doesnt practice she will lose all she has gained and has witnessed this happening to fellow students. To sign up for the next Intensive Stuttering Clinic starting July 7th phone 604.875.9100. The registration deadline is June 1st. Funding assistance may be available from the BC Ministry of Health, where in past years up to 75% of the program has been subsidized. For testimonials on the clinic visit www.columbiaspeech.com
By Wendy Hawryzki Administrative Assistant-CPABC

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-to-door, 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.

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NEWS...SITES...NEWS...SITES...NEWS...SITES...NEWS...SITES... Theatre Terrific Presents:

Summer Fringe Camps Do you enjoy acting, writing, or composing music? If so, then come and join us on Thursday, July 6th at 6:30pm and attend a fun, Free Open Fringe Class to see if you will be chosen as a Playmaker or Chorusmaker. Playmakers will create a one-ofa-kind story and Chorusmakers will build a chorus to accompany the story. For more information call 604-222-4020. All camps are held at the Vancouver Japanese United Church at 4010 Victoria Dr., at 23rd Ave., at a cost of $170 & $250. A Midsummer Nights Dream Dinner Auction Gala Music, whacky entertainment, an Indian buffet, and a live and silent auction are all part of Theatre Terrific Societys annual fundraiser. Part of the proceeds support free acting workshops for people with disabilities. Come out and have some fun! When: Friday, April 28 at 6:00 pm Where: Fraserview Hall, 8240 Fraser St. Ticket cost: $50 Call: 604.222.4020 for tickets
Simon Fraser Society

Self Advocacy Conference

Are you ready for earthquakes, fires, floods or other disasters? Are you worried about your health? Do people upset or scare you sometimes? If yes, then this conference is for you! Come and communicate and share with other self advocates! For more information call Janice Griffiths, Simon Fraser Society for Community Living. When: May 13, 2006 Time: 9:30 am to 4 pm Where: Simcoe Park Centre 811 Royal Ave., New Westminster Cost: $15 Conference only E-mail: [email protected] Tel: 604.515.9000

Play Bingo at Boardwalk Gaming Centre

Monday, June 12, 2006
Middlegate Mall Unit 3-7155 Kingsway, Burnaby
For more information visit www.lmcharities.org

Support the CPABC!

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:

Free Trust Seminar

Tim Louis and Company will be holding a free Trust Seminar for people on PWD. RSVP is required. Date: April 27, 2006 @ 5 pm Address: 208-175 E. Broadway at Main For more information please call 604.732.7678

Champlain Hts Community Centre Vancouver Aquatic Centre Riley Park Community Centre West End Community Centre Dunbar Community Centre

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In July 2005, I had the opportunity to participate in an adapted kayaking program that not only empowered me physically, but also inspired me to be open to taking risks and experiencing adventures in other areas of my life. Due to a very rare illness, I suddenly became a paraplegic at the age of 15. Since that time, I have never let my wheelchair stop me from living life to the fullest. I have been very involved in work, travel, and volunteering in my community. But, until this summer, I was not very active in sports or outdoor activities. I was just too intimated to try them. That is, until I discovered Power To Be. You see, I started dating a guy who loves the outdoors. Unfortunately, I often felt left out, as I was not easily able to go hiking with him, or rock climbing, or mountain biking. Just when I was really starting to feel down, I discovered Power To Be Adventure Therapy Society (PTB), which is a registered charity that offers adventure therapy programs that integrate inclusive outdoor activities and experiential education, provide opportunities for discovery, change, and connections. I had the amazing opportunity to take part in their adapted kayaking program. And, the best part was Blaine, my boyfriend, was also able to be involved. So, I must admit, I was very apprehensive my first day. Blaine had to practically drag me to the waters edge where we met the kayaking guide, Michelle, and the volunteers. Immediately, the Power To Be staff made me feel welcome and reassured me that there was nothing to worry about. The team was willing to make any adaptations required to ensure my time in the kayak was comfortable and enjoyable. It was amazing, as once I was out on the water, an overwhelming sense of freedom overcame me. For the first time in years, I was free of my wheelchair. My arm strength became an asset and I was easily able to fly through the water. It was such an exhilarating experience! Usually when I sign up for adapted activities, my physically able friends and loved ones are left on the sidelines watching me participate and are not able to join in. This time, Blaine was able to rent a kayak and join us on the water. This meant so much to me as it allowed us to be together throughout this empowering experience. I participated in this program on a weekly basis for the remainder of the summer. During this time, I created many lasting friendships and was inspired by the courage and spirit I saw in the other participants and volunteers. Not to mention, having the opportunity to be close to nature and to get a great tan! Blaine and I plan to continue to kayak and our adventures together have brought us closer and strengthened our relationship. In conclusion, my experience with Power To Be has been amazing and has affected all areas of my life. By learning to paddle with Power To Be, I have been empowered to be more adventurous in other areas of my life and have realised that even by taking a small risk, I can open up a whole new world of opportunities. Come out and try it, you may be surprised by the change it creates within you! For more information about Power To Be: Visit the Power To Be website at www.powertobe.ca Or contact - Karen Lai Program Manager - Open Water Connections Program Power to Be Adventure Therapy Society Email: [email protected] , Website: www.powertobe.ca Tel: 250.478.0161/ 1.800.375.2363 or Vancouver: 604.221.4835 Cell: 778.839.6120

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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Thanks to our on going volunteers .... Tony Kruse Mike Stevens Patricia Furdek Ron Wyant Pamela Liu Ronald Lee Maggie Prentice Wesley Kong George Pope

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room! How embarrassing; especially during my sensitive preteen and adolescent years
By Tammy van der Kamp Family & Individual Support Worker-CPABC

Inclusion has come a long way since I attended elementary school in the early 70s. Inclusion then meant the public school system but a separate classroom with all children with a recognizable disability. It was a BIG deal when early in grade five, I was admitted to the regular classroom, where my peers had been prepared for my arrival by a teacher, who tried very hard to make me feel welcome, but had failed to take into account my feelings as the object of discussion. I had to deal with some teasing and bullying. The disabled kids bugged me because I was in a regular classroom; therefore must be the teachers pet. The able-bodies kids ONLY associated with me when they needed my help in class. I wasnt the kid that got invited to all the parties. Due to liability issues I was the only kid confined to the school property during lunch and recess. I was constantly dogged by my adult attendant, who accompanied me to class and even the bath-

My good and bad school experiences helped equip me for adult life, particularly my role as the CPABC Family & Individual Support Worker. One of my goals is to see inclusion become a societal norm; this is one of the points of my job and my continuing education. I remember when inclusion was a new idea, so I know how important it is to asses each child individually and take into account their varying degrees of ability. Not everyone will achieve the same level of functioning; so the point of inclusion should not be to turn out grand classes of Super Quads but to ensure that everyone gets the same chance to reach their full potential in life, and enjoy it like everyone else. Inclusion has allowed me to become an active member of my community; but inclusion cannot change everything. I still have a disability, and no matter how successfully inclusion deals with barriers, there will always be people who only notice my differences but after Ive been tucked into bed at the end of the day, what matters most is whether or not Im happy with who I am, and what Ive achieved, disability and all.

SiteSeeing with Tammy

This month's feature URL will be good news for those interested in chatting and communicating with disabled people and others in a safe and moderated environment. http://www.ablelink.org Ability Online BBS is a Bulletin Board System, in the classic sense, but updated to be on the internet. Features include: Email, Chat, Moderated Discussion Groups on a wide variety of themes, Games, Homework Help. This BBS is a wonderful family-friendly site primarily catering to children with disabilities, but also with many adults with disabilities, plus parents, caregivers, and others interested in disability culture. This is a free public service. It's physically located in Toronto, Ontario, but there are members from all over the world. Yes, there are members who have Cerebral Palsy! (children, teens, and adults) If YOU have a site of general interest to our membership, that is kid-safe, please send it to me at [email protected] for possible inclusion in a future SiteSeeing with Tammy column. Credit will be given to the first sender of a link.

Strategic Planning Committee Chairs Word

Dear members and supporters of the CPABC, The Board, and in particular, the strategic planning committee, has been moving towards updating its 2004-2009 Strategic Plan. The Associations board will soon review a draft version of this plan. Many thanks are extended to all the members who took the time to complete the 2005 Membership Survey; the accumulated results of these have been incorporated into this strategic plan. If any members have not received a summary of the survey results, please contact the CPABC. Sincerely, Peter Shipley Board Member Chair, Strategic Planning Committee

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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 -$10.00

Celebrating 52 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: Louise Gaudry, Tammy van der Kamp, Peter Shipley, Feri Dehdar, Wendy Hawryzki 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