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
SUMMER 2004

Presidents Word

Minister Clark short on sympathy and knowledge

Opinion by Carol Stinson President CPABC recent Province front page article (July 12) about a Delta couple who say that the government forced them to put their severely disabled son in foster care so that he could receive adequate care highlighted the lack of knowledge the current Minister for Children and Family Development has about her own ministry. In the article Minister Clark blames the family , claiming they did not want to keep their son at home. She is quoted as saying that the ministry could have provided the family with the services to keep their eightyear-old son in their home if they wanted (my emphasis). Clark said the services available to the family include daily respite support, housekeeping support, access to money to renovate a home, counselling, medical supplies, nursing support, child-care workers, access to parent support groups and specially trained child workers. In my life as a parent of a child with CP, in my work with the CP

Inside this issue:

Update on Employment New Alternative Therapy (PST) News & Sites Important CSIL Tribunal Decision Networking Group Membership Info 2 3 4,5 4 7 8

Notice: 50th Annual General Meeting

Monday, Sept. 27, 2004 7:00 8:30 PM

When:

Association and in my day job as a family support worker with a community living organization I have yet to meet a family who receives even a few of these services. Families that do receive some support have extraordinary needs, like a single parent with significant health issues. Unless a child qualifies for At-Home funding (there are stiff eligibility rules) a typical family with two healthy adults and a child with CP may not receive any support from MCFD. The CP Association hosts parent support groups at no cost to parents, and with no funding from the government other than a Bingo licence. Parents who attend the group say that they are exhausted from the constant rounds of begging for basic services at the doors of the Ministry of Children and Family Development or at the Ministers former home, the Ministry of Education. Shame on you Minister Clark for blaming the parents for your Ministrys shortcomings.

Where:
Burnaby Association for Community Inclusion (BACI) 2702 Norland Avenue Burnaby, BC

Notice of Resolution:
Be it resolved that bylaw 8.1(d) be removed from the bylaws of the CPABC. The bylaw reads: At no time shall the number of Directors resident in the Lower Mainland of BC at the time of election, exceed 90% of the total Board.

The big project this summer at the CP Association was updating our publications. The first update is to the Guide. This little blue booklet is one of the best all-around plain language publications about CP in Canada. Many Canadian provincial associations use the little blue guide as their primary public information publication. Also due for an update this summer is our Putting the Puzzle Together a guide for educators and parents on inclusive education. The Puzzle manual is used extensively throughout the province in the instruction of Special Education assistants. More information on this updated publication will be in the next newsletter.

New Guide to Cerebral Palsy available soon!

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New opportunities for employment training

By Mathew Levy We would like to take a few moments to share some of the key "good news events" and services that can be procured through the use of the Employment Program for Persons with Disabilities contract. This program is the newest addition to the BCPA Vocational Counselling Dept. line up of program offerings to enable the SCI population or those with mobility related disabilities (for example Cerebral Palsy) to access well deserved employment opportunities. During the duration of the contract (between September 03 to the present) we have screened approximately 50 candidates. Many job seekers and those currently working have directly benefited from the tireless efforts of the clinical and administration team. For example, two wheelchair users have had their jobs rescued from vocational crisis (imminent job loss) due to the provision of disability supports such as hand controls for driving and wheelchair replacement. One worker who agreed to share his story was literally on three wheels, in a broken down old chair long past repair, when a call to the EPPD program quickly secured him a new chair and stabilized his job. He was so thankful he asked to be included in this article "to alert others of this valuable resource". In a delightful turnaround this same worker called the Vocational Department a few days later as his employer was considering the possibility of hiring another wheelchair user in his office! Our staff is currently working with the company to help them fill that position with another disabled employee. One worker was enabled not only to save a job but gain and increase hours at work. Many have been enabled to access disability supports that directly save or allow for work re-entry. Some examples include: job coaches hired to help medical professionals return to their jobs; hand controls supplied; employer liaison with a Vocational Rehab Counsellor; and ergonomic supports made available. The focus of the program is employment. The Vocational staff are happy to assist those who are jobready with immediate placement and then support their placement with training, on-the-job skills training and employer liaison. We are committed to further assist all placed candidates for a period of one year post placement to ensure that their employment is secure, or to place them again if they lose their job. All services provided by the EPPD program are free of charge to the consumer. The Vocational dept. is also eager to place volunteers or those with part time aspirations. After some planning discussions and formal assessments (vocational, learning disability, functional capacity evaluations and Neuropsychological) are complete, the job candidate may be referred for further training. This could be as short as a week-long Basic Security Course to a much longer University completion program requiring upwards of two years to complete. Though the emphasis of the program is upon employment and providing immediate access to the labour market every avenue will be considered for those individuals whose disability and lack of education prevent attachment to the labour market. Some highlights of training programs funded in the last period include the Open Opportunities I.T. program at Douglas College, the Crews @ Work Training program for Brain Injured or Learning Disabled clients, the Call Centre for Excellence program at BCIT, and a Hotel Management Program at Sprott Shaw Community College. Many exciting initiatives are in the works including Self Employment assistance and assessment, various employer initiatives and partnerships. For more information please contact the project co-ordinator: Matthew Levy, MA, RRP, Vocational Rehab Counselor Email: mlevy@bcpara.org Phone: 604-326-1232 or 1-877-324-3611

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BC Teacher develops new resource for Assistive Technology

Assistive Technology (AT) to Support Students with Special Needs is a list compiled by B.C. teacher Janet Hopkins, a specialist in what's known as assistive technology This resource is a free download available through the Web site of Curriculum Services. This group is helping to maximize education resources across the country. Assistive technology covers everything from simple pencils with special grips to sophisticated voice-to-text computer systems. Hopkins' list offers suggestions on how to help kids from kindergarten to Grade 12. It covers all sorts of conditions, from low vision, impaired hearing and mobility challenges to learning disabilities and autism. And it's free to download from www.curriculum.org just click on "learning resources" from the upper-left menu, then look at "teacher-developed resources." Hopkins hopes all teachers, not just those specializing in the education of kids with special needs, will take advantage of her online guide to assistive technology. But she's under no illusions that the existence of the list will magically endow school boards with enough funds to actually supply all children with the devices they need to make the most of their talents. Canada is way behind the United States when it comes to assistive technology, she says. By law, U.S. government purchasing policies favour companies that offer assistive technology. "So we're seeing built-in accessibility." In this country, that type of broad policy support for special education just isn't there, Hopkins says. "It's a fascinating and frustrating area." (Helen Henderson, Life Section, Toronto Star)

New alternative therapy for young children with CP : Proximal Stabilization

Proximal Stabilization Therapy (PST) is a new concept in treatment for spasticity and pain . It has shown to be primarily helpful in treating children with Cerebral Palsy (CP) 15-36 months diagnosed with quadriplegia, or diplegia, children with hemiplegia under two, children with Spina Bifida under two, children with multiple disabilities under 36 months, and individuals with back pain. Doctor referral in required. The reduction of spasms and pain is achieved by properly supporting the individuals trunk area with the use of orthopedic equipment, which is a brace that acts like an external muscle to support the chest and abdomen. This brace helps children learn balance and co-ordination in sitting, standing, and walking. After a short assessment of the child, the parents and child participate in a 2 week training program at the Canadian Proximal Stabilization Centre located in Surrey. A therapist who teaches the proper use of the brace and an exercise program conducts the training. The program consists of play activities, which the parents do with the child four hours a day at home. Follow up is provided to the parents by the therapist to monitor the childs progress and deal with any concerns and continues until the child achieves self-dependence or relief from spasms or pain. The rate of improvement or success is usually proportional to the amount of effort put into the program by the parents and child and is usually inversely proportional to the severity of the condition. On average it can take up to 18 months to become self-dependant to the point of no longer needing the brace support. For more information on Proximal Stabilization Therapy contact Kam Kamath between 10:45 am to 2:30 pm at: The Canadian Association for Proximal Stabilization of Cerebral Palsy Children 6042-148 Street, Surrey, BC V3S 3C1 Telephone/Fax : (604)599-6887 Or Doug McLeod (604)589-2376(H) Or visit the website at www.cloverdale.bc.ca/psc

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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

New requirement: Electronic deposit of MHR cheques

The Ministry of Human Resources now requires all disability benefit and income assistance recipients to have their cheques electronically deposited directly into their bank accounts. This means that the Ministry will no longer mail benefit cheques. The Ministry will be asking people to provide their bank account information by completing a direct deposit form. All new applicants will be required to complete the form. Some people are exempt, please contact the Ministry for details. The Ministry has advised that people who are not exempt and who do not provide their bank account information as required may not receive their cheques. People who do not receive their cheques as a result of this change have the right to appeal.

NEWS...SITES...NEWS...SITES...NEWS...SITES...NEWS...SITES...
OUCH! http://www.bbc.co.uk/ouch/ dull and worthy - the way we like it This is a great humour site. For example, the June feature story was: Another shaggy dog story: From deaf Dalmatians to wheelie whippets and blind bulldogs, Tom Shakespeare has been discovering the wonderful world of cute 'n' fluffy disabled pets. But are all their disabilities treated equally? And how far do disabled pets resemble their owners?

http://time5.nrc.ca/webclock_e.shtml Canadas official time reference because you always need to know the time!
http://www.pwd-online.ca/pwdhome.jsp?lang=en Government of Canada site where persons with disabilities, their family members, caregivers and service providers can access a full range of information on disability-related programs and services in Canada

2004 Rehab Equipment Expo This year's Rehab Equipment Expo (REE) is scheduled for: Tuesday, September 14, 2004 from 8 a.m. to 4 p.m. at the Seaforth Armories, 1650 Burrard St. in Vancouver. Admission is $2 at the door which includes free parking, free refreshments, and free lunch. The purpose of REE 2004 is to give clinicians and consumers in the community and health facilities access to information needed to make educated decisions regarding the purchase of assistive technology. For further information please contact: idenison@vanhosp.bc.ca Phone: 604 737-6 410 or www.assistive-technology.ca

Support the CPABC! Play Bingo at Burnaby Bingo Country Middlegate Mall 7155 Kingsway, Burnaby

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New Employment Insurance Compassionate Care Benefit

The new Compassionate Benefit means employed Canadians can take time to care for a gravely ill family member who is at significant risk of death within 6 months. Up to 6 weeks of coverage is available and can be shared between family members. Despite its initial defeat in March 2003, the program has now been instituted by the Federal Government. They state: The Government of Canada believes that Canadians should not have to choose between their job and caring for their family during a serious medical crisis. Critics mention that Doctors may be reluctant to sign the necessary form outlining that the very ill family member will likely to die within 6-month period, as this could be seen as proclaiming a death sentence. For more information contact your local Employee Insurance Office, call 1-800-O-Canada (622-6232) or visit the Website at www.hrdc-drhc.gc.ca/ei-ae/pubs/ compassionate_care.shtml

NEWS...SITES...NEWS...SITES...NEWS...SITES...NEWS...SITES...
Watch for Paul Gauthier at the Athens Olympics. Paul, a well-known advocate for persons with disabilities is representing Canada at the Paralympic Games in Boccia. The Paralympic games take place from September 17 28 in Athens, Greece.

Looking for stories! The British Columbia Association for Community Living (BCACL) is developing a brief for the Ministry of Children and Family Development on waitlists. If you have a story about waiting for services for your child, minor or adult please call Clair Schuman at 604.875.1119 or email Clair at Cshuman@bcacl.org
Fuel tax rebate in B.C. increased: Starting January 1, 2004, disabled adult individuals are now eligible for a greater maximum refund of motor fuel tax per year. The maximum allowable refund has been increased from $400-$500. Should you require additional information, please visit the consumer taxation branch web site at: www. rev.gov.bc.ca./ctb or call the consumer taxation branch at 604.660.4524 in Vancouver or toll-free 1.877.388.4440.

Mark Your Calendar! Join us from September 16th to 19th, 2004 for the kickstART2 Festival of Disability Arts and Culture in Vancouver, British Columbia! Come explore new territory in visual and literary arts, dance, theatre, music, and humour at the Roundhouse Community Arts and Recreation Centre. The Roundhouse, host site for the entire Festival, is located at the corner of Davie and Pacific, near the former Expo site. Performances, a visual art exhibit and free activities will provide lots to see and do! Workshops and master classes will bring together Canadian artists to meet and learn from each other and from invited international guests. At the free Opening Ceremonies on Thursday, Sept.16, you can get a taste of what the weekend will offer, with an exciting lineup that includes locals like singer Jennie Emery, mime artist Max Fomitchev (aka Max-i-mime), The kickstART2 House Band, the kickstART2 Choir with directors Susan Summers, Patti Powell and special guest director Pat Rix from Australia. Other international guests include comedy troupe The Nasty Girls from England; humourist David Roche, back by popular demand from the U.S.; and his compatriots Five Foot Feat, bringing a truly entertaining dance/theatre performance... For more information go to: www.s4dac.org/ or call 604.685.3388

www.virtualmall.ca/index.htm Hosting webstores created by artisans with disabilities. VirtualMall.ca was developed as a result of the Internet Business Development for Entrepreneurs with Disabilities Program sponsored by Western Diversification Canada. The purpose of the program is to teach individuals with disabilities how to develop a home-based Internet Web Store to sell local Artisan's products. Revenues generated from the sales of products in the Web Stores are shared between the Entrepreneurs and Artisans.

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Attorney General appeals Human Rights Tribunal ruling

In a June 28, 2004 ruling, the BC Human Rights Tribunal upheld the complaint by Cheryl and Phillip Hutchinson that the Ministry of Health was discriminating against them in its policy prohibiting the hiring of direct family members through the Choice in Supports for Independent Living (CSIL) program. Cheryl Hutchinson had requested that she be permitted to employ her father Phillip on the grounds that he had the best ability to assist her with her complex care needs. Ms Hutchinson had tried unsuccessfully to recruit and retain other support workers and argued that the Ministry of Health policy unfairly limited her choices. The Tribunal agreed with the Hutchinsons that a general prohibition on hiring family members was "a prima facie case of discrimination on the basis of disability". The Tribunal ordered the Ministry of Health to develop a transparent policy that would permit a case-by-case consideration of whether a family member can be paid under CSIL. The Hutchinsons began their case in 2001. In the meantime, the government responded to the decision of the Deputy Chief Commissioner of Human Rights to intervene in the Hutchinson case (and two other cases that were going forward at the time) and amended its payment to family members policy in June 2002. However, while the amended policy allows for the hiring of distant relatives, it still prohibits the hiring of direct family members. CSIL users and community organizations have persistently requested that the policy on payment to family members be a flexible one that is determined by the unique circumstances of the individual. The BC Human Rights Tribunal confirmed their belief that an individualized approach is the right way to go. BCs Attorney General Geoff Plant announced that his ministry would seek a judicial review of the Tribunals decision shortly after it was announced. You can find the Human Rights decision in its entirety at: www.bchrt.bc.ca.

C P A B C D I R E C T O R S 0 4 / 0 5
CAROL STINSON (President) Burnaby SIMON COX (Vice President) Vancouver JUDY BRITON (Treasurer/Secretary) North Vancouver EMAN HASSAN New Westminster MEGHAN MADDIGAN Surrey JONN OLLDYM Vancouver RICHARD RHEAUME Vancouver DON RENAUD Burnaby PETER SHIPLEY White Rock YOSHINORI TANABE Vancouver

New Martin Cabinet Position supports families and caregivers

On July 20th 2004, Prime Minister Martin announced his new cabinet. Among the changes introduced was the creation of a new position: a Minister of State for Families and Caregivers. The Ministry of States for Families and Caregivers is intended to ensure added attention to commitments made with respect to seniors, families and those who are asked to care for family members. The Minister of State for Families and Caregivers is the Honourable Tony Ianno. Minister Ianno has been a Member of Parliament since 1993 and has sat on a number of House of Commons Committees including the Standing Committee on Human Resources Development and the Status of Persons with Disabilities. You can write to Minister Ianno postage-free at: House of Commons, Parliament Buildings, Ottawa, Ontario, K1A 0A6

The Individualized Funding Community of Interest on World Accessibility invites you to join them for live web broadcasts. Future broadcasts will include information on subjects like CSIL Phase 2 (Client Support Group), Developing Positive Employer/Employee Relationships, Managing Budgets and Fulfilling Employer Requirements. The IF group plans to provide a regular schedule of broadcasts including repeats that will be available to their e-mail list. Topics already covered include Getting started with CSIL and Being an employer. If you would like to participate in an upcoming broadcast please send Paul Gauthier, an e-mail at pact@telus.net. Most computers will be able to access the web site broadcast without any difficulties. To be able to hear the broadcast you will either need computer speakers or a head set for your computer.

IF Web Broadcasts link the province of BC

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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
Tuesday September 21st 7 9 PM

Where
Developmental Disabilities Association 3455 Kaslo Street Corner of 18th & Kaslo (Near Sunnyhill Hospital) Vancouver

Topic
Get results from an IEP: Your childs IEP will guide the coming school year. But many IEPs lack appropriate goals. Learn about SMART IEPs: S Specific, M Measurable, A Action oriented, R Realistic, Relevant and T TimeLimited. Bring your childs IEP for some personal consultation time! Tuning up your Advocacy Skills: Weve all written letters and made phone calls to get what we need for our kids, but could we be more effective? Cathy Camley is a well-known advocate from the Learning Disabilities Association of BC and she has some great ideas we can all use. My favourite things: Christmas is coming! Lets learn about great gift ideas. Do you have a book or a CD which has carried you through the years? Does your child have a toy which grew with him or her? Come and tell others about it! Vendors of some great products will be there too to make this a one-stop shopping opportunity for you!

Thursday October 14th 7 9 PM

Richmond Society for Community Living Richmond Caring Place 7000 Minoru Blvd Richmond

Tuesday November 16th 7 9 PM

Developmental Disabilities Association 3455 Kaslo Street Corner of 18th & Kaslo (Near Sunnyhill Hospital) Vancouver

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

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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 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, Tammy van der Kamp, Mathew Levy 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

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