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issue

summer 2012

neWs

2012 Survey Summary

general

RRSP into disability trust

World CP day
World CP Challenge

the
CE R E B R AL P ALS Y A S S O C I A T I O N O F B RI TI S H C O L U MB I A

President’s

Words

I have been enjoying the beautiful sunny weather and some of the many cultural/summer festivals and events that are offered throughout the greater Vancouver area. I hope that everyone is having a relaxing and enjoyable summer. I am very pleased with the July 11, 2012 announcement by the Translink’s Board of Directors to reverse their original decision to eliminate the taxi saver program. Taxi savers are vouchers that people with disabilities and seniors can use to get a 50% discount on taxi fares. People rely on taxi savers as an integral part for them to stay engaged in the community. Many of us, including myself, retain a certain amount of taxi savers at all times for those moments when we need an immediate transportation option for emergencies. The

elimination of the taxi saver program would have removed a critical safety option for people in times of urgency - ultimately, people would have been hurt without taxi savers. I was part of the community-based campaign for the continuation of the taxi saver program. The focal point of the campaign and its slogan, `Taxi Savers are Life Savers`, illustrated perfectly the importance of taxi savers in people’s lives. The People with Disabilities and the Seniors Advisory Committees for the city of Vancouver were instrumental in convincing the Translink board of directors that the elimination of the taxi saver program was a bad decision - additionally, Vancouver city council passed a motion unanimously to not support the elimination of the program. I commend the efforts and time spent by members of both advisory committees that led to the retention of the program. July 12, 2012 - a day after the Translink’s announcement, a third pub-

lic forum had already been planned. It quickly turned into a celebration of the victory to save the taxi saver program. It was at the celebration that someone there stated that those involved were ‘wheelchair warriors’. In response, I stated, ‘I like the sound of that’. The gentleman then responded with, ‘Go ahead and use it’; thus, ‘Wheelchair Warrior’ is now incorporated into my signature line. At the time of the taxi saver dispute, I was the vice-chair of the disability advisory committee for Translink. On July 09, 2012, I was forced by Translink personnel to resign from their advisory committee due to my public opposition and concerns regarding the elimination of the program. I did resign proudly as I knew I was doing the right thing and I was appropriately representing the best interests of people with disabilities and seniors. My forced resignation was unfortunate. Accessibility on public transportation still remains a high priContinued on page 2

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CPABC news
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summer 2012

ority for me. I now know I can be more effective to advance better accessibility through community-based collaboration. The phrase, ‘It is okay to say NO`, spoken to me many years ago from a personal mentor, gave me the strength and courage to speak out contrary to Translink. This is the message I want to leave with all of you. It is okay to say ‘NO’ and we must say ‘NO’ when it comes to bad decisions that will hurt ourselves, other people with disabilities and seniors. Once we say ‘NO’ then we can begin to have a conversation of how to best deliver programs and services to truly serve the best interests of people with disabilities and seniors throughout BC and Canada. Your President, Craig Langston ‘Wheelchair Warrior’

They Want Your Teeth!
Back in May the Cerebral Palsy Association was approached by the BC Dental Association. They asked that we provide them with the names of adult members of our association - with cerebral palsy - living in the Lower Mainland area, who may wish be participate in their dental pilot projects. Word went out via our webpage, Facebook, Twitter and personal emails. Pilot projects are meant to collect data on the outcomes of providing dental care to vulnerable individuals and to identify any gaps in dental coverage that may exit in government plans. Potential participants

BC Dental Association . BCDA
are asked to fill out a medical questionnaire and to have a quick exam of their mouth to determine if they are a good fit for the project. Once accepted into the program they will have a dental examination to determine what treatment is required. Participants are asked to fill out an evaluation form before, during and after the pilot is completed. There is no cost to patients participating. If this sounds like something you would be interested in registering for please email us at wh@bccerebralpalsy. com or call us at 604-408-9484 and we will add your name to the list!

A Cerebral Palsy Registry for BC

It is estimated that 100 children are born, in BC, each year with cerebral palsy (CP). At the moment there is no one place, where all children with CP go for treatment; therefore, there is no one place that is compiling data on this condition. The Cerebral Palsy Registry of BC hopes to change this, but they need your help. 2

On May 9th your CP Association met with Diane Wickenheiser, the BC Project Coordinator for the Canadian Cerebral Palsy Registry. If you have a child with CP, who was born in 2009 and 2010, Diane would like to interview you. She will be collecting data around such things as the Mom’s health, delivery, infections prenatal risks, the services your child is receiving, how often, and if you are happy with these services. Confidentiality is respected. A number is assigned to each child so no personal information goes into the date base. The registry hopes to eventually link into other data bases around the world to look at such things as: if certain types of CP are more prevalent in one part of the world than an another, if links can be found in children who have CP and if certain types of CP can be traced back to a common denominator. Governments like statistics. It is believed, by your Association, that if we can gather numbers on CP we can lobby the government for services and funding because we will be able to show – statistically - the areas in which those services and funds are needed. This may be a huge benefit to individuals with CP. If you have a child who was born in 2009 or 2010, and would like to know more about this study, please contact Daine Wickenheiser, BC Project Coordinator for the Canadian Cerebral Palsy Registry, at 604-453-8300 ext. 8482.

TO RAISE . TO REACH . TO REALIZE

2012 Survey Summary
The Board of Directors would like to sincerely thank everyone who took the time to participate in our spring survey. We were looking for some confirmation that the road we were going down was the direction our members really wanted go and we believe we did receive this support. How we communicate: The most important finding from the survey is that our members are very well connected to social media and internet resources. Over 90% of the responses to the survey were completed on-line even though there was a mail-out of hundreds of hard copies of the survey in our spring newsletter. Most respondents want to communicate with the CPABC through e-mail or social media such as Facebook or Twitter (86%). Our newsletter is still our most appreciated service however the biggest reason people did not use our other programs was because they were not aware of them (45%). This will encourage us to work harder on how we share information about our bursaries, camp subsidies and personal supports. We also need to improve our website so that these programs are easier to find on-line.

By Carol Stinson, Board of Directors

Our internet resources, printed resources and individual advocacy and support program have also been well used and are very much appreciated by respondents. We received a great deal of support for developing a support-style and information-sharing group that could reach all areas of the province using new on-line technologies (79%). Systemic Advocacy: We really appreciate the support we received for our intention to go forward with more systemic advocacy (87%). We are aware that Revenue Canada is watching non-profits for their levels of advocacy but we believe that we can walk this line successfully. We received many written comments about how we might move forward and we would like to thank the people who pointed out that we need to include employment opportunities as something we need to advocate for. Social isolation and a lack of recreational opportunities (68%) were also mentioned many times in the written comments. There were also many comments about programs and services for

children and better access to medical services (62%) for everyone is an important issue. Conclusions: Please watch our newsletter, Facebook page, Website and Twitter feed for our new programs and services as we move into the future and thank you again to everyone who took time out of their busy lives to participate in our survey! Survey results will be posted at www.bccerebralpalsy.com

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CPABC news

summer 2012

CP Challenge

Collateral Form

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TO RAISE . TO REACH . TO REALIZE

World CP Challenge is an exciting 4 week team activity that will get you active and improve your health and wellbeing. It’s also a fun way to raise much needed funds to support the Cerebral Palsy Association of British Columbia’s vital work. Perfect for co-workers, school classes and family friends, it’s something everyone can enjoy!

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CPABC news

summer 2012

Burnaby Lions We Thank You!
On June 5, Tammy van der Kamp and Feri Dehdar were invited to dinner by the Burnaby Host Lions Club, where they enjoyed a White Spot burger. After dinner Tammy outlined the CPABC’s accomplishments for the past year, and gave the club members an idea of some of the funding challenges facing the CPABC for the upcoming year. Some of the accomplishments that Tammy mentioned were the 8 CPABC bursaries awarded this past year to students living with CP to assist with their post-secondary education. It costs the CPABC $2,500 per student to be able to maintain this valuable program. The CPABC also enabled 14 children and adults with special needs to attend a summer camp of their choice through the campership subsidy program. It costs CPABC $ 2,000 per camper to be able to continue to help send people to camp each year. Another accomplishment The CPABC is proud of this year was their ability to make a contribution of $2,000 toward the construction of the Agur Lake Camp project. This camp will be unique in BC and will provide fun, respite and support for children with special needs and their families. Like all non-profit charitable organizations, the CPABC has had to operate with limited resources due to cutbacks in

funding from the BC Gaming Commission. This means we’re becoming ever more creative in our quest for funding projects, and we must also make each dollar work harder. So we are very excited when groups like the Burnaby Host Lions express an interest in our bursary program. This small but generous club went out of its way to make us feel welcome. Even PADS dog Breeze enjoyed herself, as she had an opportunity to schmooze with an old friend, Aaron the Guide Dog, a beautiful black lab. Just a couple of days later, on June 7, Tammy and CPABC President Craig Langston were guests of honour at the Annual Donation Barbecue hosted by the Burnaby Lougheed Lions Club, where they accepted a cheque for $500.00 and enjoyed a delicious barbecue dinner. The CPABC is only as effective as it is because of the generosity of groups like the Burnaby Lougheed Lions, and the Burnaby Host Lions, who understand the value of our vision to see people who live with cp reach their full potential. With this kind of support behind us, the CPABC cannot help but succeed in its mission. CPABC would like to thank both the Burnaby Host Lions Club and the Burnaby Lougheed Lions Club for their continued support. For more information about our bursary or campership subsidy program or if you would like to make a donation to help us keep these programs available for those affected by cp, please contact our office at 604-408-9484 or info@ bccerebralpalsy.com .

C.a.m.p.

Where Kids can be Kids
can be a real barrier to that child being able to attend. That is where the Campership Program of the CPABC comes in. Thanks to the generous donations we receive, towards this program, we can assist members of our association with the many costs associated with going to camp. Seventeen year old Olivia has received funding from us for the past four years and has just returned from a six day stay at Camp Winfield. Her parents wrote: Thank you so much! We really appreciate all you give to Olivia and to so many other deserving kids. Olivia had a great time at camp and is already looking forward to next year.
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We are excited to report that the CPABC’S Campership Program has just completed its fifth year financially assisting kids attend a special needs BC camp of their choice. This year’s nine campers ranged in age from 6 – 18 years and participated in camps in Mission, Winfield, Squamish and Coquitlam. Our camp subsidies went towards such costs as partial camp fees, transportation costs and care attendant fees. Without the help of an attendant, many of these children could not attend camp; so even though the camping session itself may be free to the participant, the care attendant fee 6

CPABC General

summer 2012

TO RAISE . TO REACH . TO REALIZE

Training with Cerebral Palsy - an E-Book
In his book, Training with Cerebral Palsy, Joshua Neufeld, personal trainer, provides exercises, stretches, activities and nutritional recommendations that assist people with cerebral palsy to live a healthier lifestyle. Check out his website at www.cerebralpalsytraining.com and start training today!

Adaptive Slippers
Do you have swollen feet? Are you unable to slip feet easily into slippers? Silverts Adaptive Footwear has the answer with their extra wide opening, skid resistant, easy touch closure slippers. Contact Silverts today at www.silverts.com or 1-800-387-7088. They are in Canada.

Are you claiming all you can? Revenue Canada
If you don’t know about it, you can’t claim it! So educate yourself and start keeping track. A few of the items listed on Revenue Canada’s website under allowable medical expenses include: bathroom and walking aids, specially trained animals (cost, care and maintenance), vehicle modification, stairway chairs, disposable briefs/diapers, note taking services, respite care expenses, laboratory services, renovating, and construction expenses that offer greater mobility to an individual with a mobility impairment. To speak to a person about an expense you may be wondering about call 1-800959-8281. To view a list of allowable medical expenses go to www.cra-arc. gc.ca. Hit the search tab. In the search for box enter the words list of allowable medical expenses. Now click on #1 Which medical expenses are eligible? Presto – you are there! This website is worth a look-see every so often as allowable expenses do change.

Can I role my RRSP into my disability trust?
A Registered Retirement Savings Plan, or “RRSP”, is created with pre-tax dollars. As a result, when funds are deregistered and paid out of the RRSP, income taxes must be paid. A disability trust, on the other hand, is created with “after tax” dollars and has no special tax-exempt status. As a result, if you wanted to move money from an RRSP to a trust, you would first have to withdraw (or “de-register”) the funds from the RRSP, pay income tax on these funds, and then place them into the disability trust. There may be a significant tax liability when funds are withdrawn from the RRSP. However, a person normally

By Halldor K. Bjarnason, Lawyer - Access Law Group. www.Trustlawyers.ca can’t qualify for provincial disability assistance when they have an RRSP. Never-the-less, it may well be worth taking the tax hit in order to qualify - particularly if there are high medical costs involved. However, it is always wise to get legal and accounting advice before making the decision to liquidate an RRSP in order to get provincial disability assistance. Please note that this column is provided for general information only. As specific facts affect how the law is applied to your circumstances, it is always wise to get the advice of competent legal counsel.

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It truly is a fabulous place where kids with special needs can be themselves, accepted with no boundaries, and given every opportunity to feel “typical”, included and loved..... Summer is a time for busting loose, having fun and feeling free. If you would like to help towards next year’s campership program please contact us at 604408-9484 or 1-800-663-0004 to make a donation. It will make a difference… 7

CPABC news

summer 2012

Now, more than ever before your membership will help to :

Access 2 Entertainment Card Do you Have Yours?
The Access 2 Entertainment Program was launched in Dec. 2004 making entertainment more affordable for those requiring a support person. People with disabilities can apply for a personal Access 2 Entertainment Card which provides free admission, or a substantial discount, for their support person at movie theatres and other entertainment venues across Canada. A fee is required to receive a card which is valid for 5 years. Applications are available at www.access2.ca

“REALIZE EQUALITY IN A DIVERSE SOCIETY!”
Become a Member today!

Membership fee: $20 Dona�on: I would like to make a donaƟon to support the services and programs of the Cerebral Palsy AssociaƟon of BC. Income tax receipts are only issued for donaƟons of $10 or more, unless requested.

$100
My choice:

$75

$50

$25

Method of Payment: I have enclosed a cheque payable to the CPABC or: Visa # Expiry Date Name on Card Today’s Date Signature Please mail to: Cerebral Palsy AssociaƟon of BC 801-409 Granville Street Vancouver, BC V6C 1T2
(Charitable Registra�on Business Number 10690 4204 RR0001)

Announcing

The 58th Annual General Meeting of the Cerebral Palsy Association of BC
Date: Thursday, Septemmber 13, 2012 Time: 6:30pm - 8:30pm Venue: Bonsor Community Centre Multi Purpose Room 1, 2nd Floor 6550 Bonsor Avenue Burnaby, BC V5H 2G8 Members, community partners & new members are all welcome to attend. Seating is limited. Please RSVP by calling 604.408.9484 or toll free in BC at 1.800.663.0004 to reserve your seat. www.bccerebralpalsy.com

VOLUNTEER BOARD MEMBERS
CRAIG LANGSTON President TRISH MCKAY Vice President ANDY YU Treasurer CAROL STINSON Secretary RONALD BLACKMORE TERREANE DERRICK TONY KRUSE JONN OLLDYM

STAFF
FERI DEHDAR Director of Programs & Administra�on TAMMY VAN DER KAMP Family & Individual Support Worker WENDY HAWRYZKI Administra�ve Assistant

Cerebral Palsy Associa�on of Bri�sh Columbia 801-409 Granville St. Vancouver, BC V6C 1T2 Phone: 604.408.9484 Toll-Free (Enquiry CP): 1.800.663.0004 Fax: 604.408.9489 Email: info@bccerebralpalsy.com Office Hrs: 9 AM to 5PM, Monday to Thursday

CONTRIBUTING WRITERS
WENDY HAWRYZKI & TAMMY VAN DER KAMP

PLEASE RECYCLE THIS ROUNDTABLE BY PASSING IT ALONG TO SOMEONE ELSE!

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