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C e r e b r a l P a l s y A ss o c i a t i o n of B r i t i sh C o l u m bi a

The Roundtable
WINTER 2005

President’s Word
Hi everyone. This is Craig Langston and I would like to start by saying thank you for electing me to the Board Of Directors of the Cerebral Palsy Association of BC (CPABC). At the first meeting of the newly elected Board, I accepted the role as President. I am excited about being part of the CPABC family. I hope to do my best in providing leadership and in representing the CPABC. I would like to take this opportunity to tell you a little bit about myself: I am an Aboriginal person who also has Cerebral Palsy. I am also a divorced father of two wonderful kids. I have a daughter, Kailey, who is ten years old and a son, Jamie, who is four years old. Both kids live with their mother. Thus, the time I spent with the kids is very important to me. I currently live in Surrey. However, on April 01, I will be moving to Burnaby, close to Metrotown. I grew up in Alberta, just outside of Edmonton, in Fort Saskatchewan. I moved to Vancouver in 1989 and started a banking career of eleven years. After seven years as a Loans Manager I wanted a change. In 2000, I accepted a position as a Collections Officer for Canada Revenue Agency (CRA) and I am still with them. I am currently on Long term Disability with CRA with the hope of returning to work, at some point soon. I am currently active on the City of Vancouver’s

Inside this issue:
CPABC Response to Disability Tax Report New West MP & Disability Issues News & Sites Needs & Gaps Report 2004 Networking Group Membership Info 2

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Action Committee on Disability Issues. We discuss and deal with issues of disabilities and make recommendations to the City of Vancouver Council. I am also active with the BC Aboriginal Network on Disabilities Society. I continue to advocate and speak to issues of employment equity within the Union of the Public Service Alliance of Canada. I have previously been the Chair of the Board of Directors for two years of a housing co-operative. About a year ago, Louise Gaudry approached me to be involved on the CPABC’s Strategic Planning Committee. I like the new focus of CPABC being the Knowledge Centre for Cerebral Palsy. I hope I can provide some positive assistance towards this important endeavor. I am very passionate about disability and Aboriginal issues and moving towards a truly barrier free society. I look forward to applying my energy, my knowledge and my experience in moving CPABC forward. Feel free to contact me by phone at (604) 6144423 or e-mail: ctmlang3@yahoo.ca . I wish you all the very best for 2005 and I look forward to connecting with some or all of you in my role as President. Thanks, Craig Langston

NEW! Living a Healthy Life With Chronic Conditions Program
Tammy van der Kamp, CPABC’s Family and Individual Support Worker, has trained as a leader for Living a Healthy Life with Chronic Conditions after attending the program herself. She recommends the program for all adults who live with any long-term health condition. The program was initially developed at Stanford University and research confirms it is making a real difference in the lives of participants. There is no cost for the program as it is funded by the Vancouver Coastal Health Authority. It is offered year-round in various communities. See the website: http://www.coag.uvic.ca/healthyliving/ for a list of dates and locations where the program is being offered, call (604) 940-3568 or call Tammy at CPABC for more information. The program provides practical suggestions and support, which builds confidence in coping with the everyday challenges of a chronic condition. Anyone who is experiencing a long-term or ongoing health condition, can attend. The program is also open to relatives, friends, and caregivers of people with chronic conditions. Two trained leaders meet with groups of 10 – 15 participants for 2 ½ hours, once a week, for six consecutive weeks and each participant receives a FREE copy of the companion book, Living a Healthy Life with Chronic

Conditions.

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CPABC response to disability tax report
By Carol Stinson Treasurer CPABC On December 15, 2004, the Technical Advisory Committee on Tax Measures for Persons with Disabilities released its report “Disability Tax Fairness”. The report is available on the web at www.disabilitytax.ca (the full report is very lengthy so you may want to read only the summary of recommendations). As the Treasurer of the CPABC, I am encouraged that the Federal Government is trying to address issues of inequity in the existing tax system and unmet disability-related costs for persons with disabilities, their families and caregivers. Many of the recommendations are “housekeeping” measures to improve communication between the Canada Revenue Agency (CRA) and Canadians regarding legitimate disability measures - but some are more positive. Some of these are: ⇒ to increase flexibility in RESP rules for students with disabilities. ⇒ to review of RRSP/RRIF rules to allow more flexibility for the use of funds left to a child or a grandchild with a disability. For example, allowing a roll-over into a discretionary trust; ⇒ to expand disability supports for education and employment purposes by recognizing more expenses as legitimate deductions. For example, note takers or voice-operated software could be deductible; ⇒ to increase the Child Disability Benefit by $600 to a maximum or $2,253 and this amount be indexed to the cost of living; ⇒ to increase the refundable medical expense supplement from a maximum of $562 to $1,000 - to be indexed; ⇒ to increase the limit of expenses under the medical expense tax credit by caregivers from $5,000 to $10,000. I also have a few concerns regarding the report. These include: 1. The recommendation that CRA review the expenses being claimed under the medical expense tax credit and consider the appropriateness of these claims. Parents in the CP Community have particular problems with covered expenses for children. Often new therapies are tried on children because there is a possibility of improvement. Parents pay for these therapies because they will pay or do anything to help their children. The CRA is slow to recognize new therapies, whether they work or not, and seem to take a zealot’s approach to refusing claims. Our family has been audited twice by CRA for medical expenses for our daughter and most families I know have similar CRA harassment stories. 2. Regarding the Child Disability Benefit, the committee decided not to extend it to middle income families because of “fiscal constraints”. The committee confirms that the benefit does not mirror the income range for the typical child tax benefit but it would cost too much. (It is the children of middle income parents who will not benefit much from the changes to the RRSP/RRIF and RESP rules and this further reduces their chances of benefit.c) 3. The discussion regarding caregivers is pretty blunt about the tax system’s ability to offer support: “The function of the tax system is to recognize extra costs incurred by Canadians … that reduce their ability to pay tax. It is not to compensate or reimburse individuals for expenses they incur or for foregone income” (pg 65). The disability community has to recognize that the scope of these recommendations are quite narrow – and why. In their conclusion, the committee recognized that many issues, while outside of their mandate, had a great impact upon the cost of disability to individuals and society. For example, the total system of benefits needs to be better coordinated so that one benefit doesn’t reduce another benefit. This problem is recognized in the report but no leadership role is recommended The committee recommends spending more money in the future on “programs…to target new Continued on page 3

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New West MP takes on disability issues
Burnaby-New Westminster MP Peter Julian has been minority governments appointed to a national subcommittee on persons with last an average of two years. He hopes disabilities to be chaired by Liberal MP Ken Boshcoff. that the In December Julian announced the launch of his subcommittee can campaign, Time to Act, which he hopes will end 3,000 achieve "significant days of what he terms "Liberal inaction since the Task progress" before the next election, but he Force on Disability Issues tabled its report." is realistic. "These "In 1996, the Liberals claimed to have the will to act - are really important now is the time to act," Julian said. "We now have a issues that, given the minority Parliament and I believe this is a case where we size and scope of the problem, will take can pressure the government to take action." sustained work to Julian pointed out that four million Canadians, or 13 per achieve results," cent of the population, have a disability. In addition, Julian said. people with disabilities have an unemployment rate twice that of others. They usually earn only 75 per cent of what Julian pointed out other Canadians make in the same job and the poverty that he has taken the rate among people with disabilities is also higher than the concerns of the disabled to heart in norm. his own riding, All seven people on the subcommittee are rookies to equipping his Ottawa, including Julian, a fact that excites him. "One of community office the advantages of new people is we tend to look at with wheelchair things in a new way," Julian stressed. accessibility at the entrance, an accessible washroom and a TTY phone line for people who are deaf or hard of Julian said the clock is already ticking because most hearing.

Continued from page 2 funding where need is greatest” (pg 81). As the parent of a child with CP I have concerns about dollars which don’t seem to reach the people for whom they are intended. Money must be put into the hands of individuals, or their caregivers, to spend where they perceive their need is greatest and the tax system can work to do this. In the concluding chapter, Future Directions, I would have liked to have seen more dynamic language and suggestions in the recommendations. There are some interesting musings on a social model framework of disability (pg82) and the committee notes that the disability community needs the resources to participate in public consultation and debate. For example, the CPABC has a great deal of trouble finding the financial resources to advocate for or represent persons with CP at local, provincial or federal tables. “Funders” fund

services, not advocacy. The committee recognizes that young persons with disabilities living in poverty face different challenges than seniors with acquired disabilities who have had a life-time to accumulate assets and who, therefore benefit fare more from tax-reduction measures. But the committee’s recommendation of money for programs will not solve the problem of poverty without leadership to guide all levels of government in coordinating benefits. In conclusion, we can hope that the recommendations in this report will be considered favourably by parliament and maybe even expanded upon to include middle-income families. These recommendations are a piece of a vision for the future for a better, more secure life for ourselves or our loved-ones who live with a disability. It lies with the disability community to continue to bring our concerns to the attention of parliament.

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

Community Living Restructuring Fund
Following a provincial government decision to make significant changes to the way it delivers community living services in British Columbia, it provided a $20 million fund through the Ministry of Children and Family Development to assist in making those changes. The funding supports creative projects that will provide more choice for individuals and families while reducing the costs of services and supports. To distribute and manage the Fund, the Ministry placed it in trust with the Victoria Foundation on March 31, 2003. It is anticipated that this Fund will continue to provide grants through to the end of 2005. If you would like more information about the Community Living Restructuring Fund, please visit the CLRF website at www.clrestructuringfund.ca or call toll free to 1-877-433-7654

NEWS...SITES...NEWS...SITES...NEWS...SITES...NEWS...SITES...
PWD Online has expanded. The government of Canada website for person with disabilities is a good place to search for many links to federal programs and benefits, including taxes, rights legislation, accessible travel and current publications and reports of interest to the disability community. Go to: http://www.pwd-online.ca/pwdhome.jsp?lang=en
FOR SALE: 1988 White Ford Econoline E150, 178,400 km, Air cared. Raised roof, runner boards, mag wheels, 2 customs built passenger seats with built-in storage, Sony CD player with remote, fully carpeted interior. Ricon powered side lift with remote and side toggle (inspected annually) and tie-downs. New radiator and front brakes; transmission serviced recently (have receipt for all). $7800 OBO call 604-874-6966.

Support the CPABC! Play Bingo at Boardwalk Gaming Centre
Monday, February 07, 2005 Monday, March 14, 2005 Monday, April 18, 2005

Seizures and Epilepsy Education Program When: March 12 and 13, 2005, 9 a.m. to 6 p.m. Who: For individuals, families, professionals Why: Learn about epilepsy from Dr. Robert Mittan, clinical neuropsychologist, international expert http://www.theseeprogram. com/ Where: BCIT, 4700 Willingdon Avenue, Burnaby, BC, Building SWI, Room 1205 Cost: $25 - $150, seating limited, pre-registration required, subsidies available Contact: Fraser Valley Epilepsy Society, 604-853-7399 or Download the education program brochure at: http://www.fraserhealth.ca/Fineprint/Adobe.htm

Middlegate Mall Unit 3-7155 Kingsway Burnaby

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Be cautious with your donations!
It’s a perennial problem that doesn’t 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 doesn’t 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” don’t 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.

NEWS...SITES...NEWS...SITES...NEWS...SITES...NEWS...SITES...
The Motion Picture Theatre Associations of Canada and the National Advisory Council of Disability Organizations have developed a program that will provide discounted admission to the support person accompanying a person with a disability to member movie theatres across Canada. Application for the Access 2 Entertainment Card must be verified by a Registered Health Care Professional as defined in the application form or by presenting a copy of an authorized client identification card from a recognized disability service provider (for example the CNIB client identification card) and the applicant must be a client/patient of the authorizing health care practitioner/service provider. For more information please call Feri at the CPABC office or go to: http://access2.ca/english_default.html

Jumpin’ Jack a success for Theatre Terrific
CPABC is proud to have been a community sponsor of Theatre Terrific Society’s production of the hilarious comedic drama Jumpin’ Jack, written and performed by award-winning Lyle Victor Albert and directed by Richard Lett. Jumpin’ Jack ran for 10 shows at the Havana Theatre, Nov. 18 – 28, and received critical and audience acclaim. (Georgia Straight review) An abandoned “love child”, Jack grows up in a small farming community - oblivious to his stellar parentage – until one day he catches a glimpse of his mother on the video of a Stones concert. What ensues is an odyssey that takes him across the land following the path of Rolling Stones’ concerts with both dark and hilarious results. Lyle Victor Albert is an established playwright and performer who lives with cerebral palsy. Theatre Terrific Society produced Albert’s first one-man show Scraping the Surface, touring throughout North America and Europe. Scraping the Surface was the 1996 winner of Edmonton’s Sterling Award for Outstanding New Play. After adapting Scraping the Surface for young audiences, the show was awarded Vancouver’s Jessie Award for Outstanding Script and Performance for a High School Audience in 1997. Recognizing the importance of art in the community, each performances was sponsored by a community organization serving people with disabilities, including: The Cerebral Palsy Association of BC, The Society for Disability in Arts and Culture, the BC Coalition of People with Disabilities and BC Disability Sports.

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THE ROUNDTABLE

WINTER 2005

Federal “Needs and Gaps” report released
The report, Support and Services for Adults and Children Aged 5 – 14 with Disabilities in Canada: An analysis of data on needs and gaps was released in December, 2004. To read the report in full go to: http://www.socialunion.ca/pwd/gapsreport2004.html The report responds to a request by Ministers and Deputy Ministers Responsible for Social Services for more information on whether persons with disabilities in Canada have adequate access to the supports and services they require for full inclusion. The types of supports examined include aids and devices, assistance with everyday tasks, supports within school, supports within the workplace, and household accommodations. The report provides a basic profile of those with requirements and unmet needs for disability supports. The report is in two parts – adults and children. Only the children’s section is discussed here*.

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

D I R E C Some conclusions for children include: T ƒ Two thirds of Canadian children with a disability (105,000) require aids and O devices related to their disability. R ƒ Just under half of these children (48,500) have some level of unmet need for aids S
and devices. Among adults with disabilities, over two-thirds of those who require aids and devices have their needs fully met. This suggests that children may not be doing as well as their adult counterparts in accessing aids and devices for their disability. Severity of disability plays a key role in level of need and unmet need for aids and devices: Half of children with mild disabilities require some type of aid or device, compared with 90% of the severely disabled. Only 3 in 10 children with very severe disabilities have their needs for aids and devices fully met. While a number of people reported multiple reasons for unmet needs, financialbased reasons are the most prevalent.

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Supports Needed at School ƒ Seven in ten children with disabilities (just over 100,000) require an aid, device or service at school to pursue their education. Nearly three-quarters of these children have their needs fully met. ƒ The most commonly required aids/devices/services are 'tutors' or 'teacher's aides' (required by just over 90,000). ƒ The most prevalent reason identified for the unmet need is "school funding cutbacks" (listed by 80% of those with unmet need). ƒ Only 7% of children with disabilities (9,760) attending school report a need for modified building features at school. Supports Needed at Home ƒ 34% of children with disabilities (52,000) have parents who report a need for household support due to their child's disability, with two thirds having unmet needs. ƒ Support to 'take time off for personal activities' is required by 50,000 families of children with disabilities while many require time off to attend to other family responsibilities; and 13% require support with everyday housework. Among those who require support with housework, 80% have an unmet need. ƒ Only 4% of children with disabilities (6,600 children) require special features to go in and out of their home, and a similar number require special features for use inside their home. However, there is a high degree of unmet need for all of these requirements. ƒ About three in five children requiring some type of specialized feature to get in, around, or out of their home have an unmet need. Cost is the number one reason listed for these unmet needs. ƒ It is important to note, however, that over a third of these families report that they do not know where to look for help. *The examination of supports for children with disabilities is limited to those aged 5 to 14 because most of the relevant information from PALS is available only for that age group. Most of the questions regarding supports and services were not asked of those under the age of 5.

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Lower Mainland Family Support and Information Group
The Cerebral Palsy Association of BC, The Developmental Disabilities Association and The Richmond Society for Community Living are co-sponsoring support and information meetings for individuals with disabilities and family members of people with disabilities.

***Please post and share***

When
Thursday January 13, 2005 7 – 9 PM

Where
The Caring Place 7000 Minoru Blvd., Richmond

Topic

Representation Agreements: Who will make decisions for you if you are not able (Unless otherwise advertised, meetings at to speak for yourself? Join us for a presentation the Caring Place will be held in R.S.C.L.’s from the Representation Agreement Resource Youth Connections space. Please enter Centre. Youth Connections from Minoru Blvd. Website: www.rarc.ca
through the outdoor playground.)

Tuesday Developmental Disabilities Association Taxes: CGA Eileen Reppenhagen will be back to tell us what’s new in this tax year and what deductions February 15, 2005 3455 Kaslo Street to watch out for. 7 – 9 PM 18th & Kaslo, Vancouver Thursday March 10, 2005 7 - 9 PM Richmond Caring Place 7000 Minoru Blvd Richmond Transition from Elementary School to High School: Parents and Resource teachers from Richmond and Vancouver schools will speak on how to plan for the best transition possible for your child from elementary to high school.

Tuesday April 19, 2005 7 - 9 PM

Leisure Fair: Come out and get valuable information Developmental Disabilities Association about what your son or daughter (children and 3455 Kaslo Street adults) can do for fun this summer! Many organiza18th & Kaslo, Vancouver tions will be available to discuss their programs with you. Richmond Caring Place 7000 Minoru Blvd Richmond Sharing Celebrations and Building Social Bridges with Scrapbooking: Tamara Kulusic will facilitate this fun, hands on workshop. There will be a $5.00 charge for a 2 page layout to ‘make and take.’ Please bring several photos of one recent event. Please R. S.V.P. by phone for this session – 604-279-7057so we can prepare enough materials for everyone.

Thursday May 12, 2005 7 - 9 PM

For more information, to have your name put on our email reminder list or if you require child care (please request at least one week in advance), Please call: Feri Dehdar at CPABC @ 604.515.9455 See you there!!

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THE ROUNDTABLE

WINTER 2005

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 50 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: Carol Stinson (editor), Feri Dehdar, Craig Langston Cerebral Palsy Association of British Columbia 102-317 Columbia St. New Westminster, BC V3L 1A7 Phone: 604.515.9455 Toll-Free (Enquiry CP): 1.800.663.0004 Fax: 604.515.9466 Email: info@bccerebralpalsy.com Office Hrs: 9 AM to 5PM, Monday to Thursday

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

We’re on the web: www.bccerebralpalsy.com

Now…more 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: _________________________ Today’s 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