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FALL 2011

CEREBRAL PALSY ASSOCIATION OF BRITISH COLUMBIA

President’s

Words

Merry Christmas and/or Happy Holidays! It is already nearing the end of November. The busy time of the holiday season is just around the corner. There is a chill in the air and many of us have received the first snow flurries of winter. It has been wonderful to see more and more of our youth and young adults showing their respect for those who have fought, for those who have died and for those who continue to serve and protect the freedom of our great nation, Canada again we say, thank-you! We would like to express our appreciation for all contributions from our donors and funders. CPABC is proud to be able to offer campership subsidies and the Tanabe Bursary. These are opportunities for us to give back to you as members and to those living with CP. The contributions from the Kinsmen Foundation have allowed recipients of our Tanabe Bursary to move forward with their educational goals. We wish success to all Tanabe Bursary recipients in their future endeavours.

We are also pleased to acknowledge that the CPABC is now benefiting in a special way from the bursary program. With pleasure we welcome James Jordan, a Tanabe Bursary recipient, as a new member of CPABC’s Board of Directors. The bursary program also supplied us with three well spoken guest speakers at our AGM in Sept. - James Jordan Victoria, Dallas Bennett - Campbell River, and Tara Kowalski - Chilliwack. Here are some of CPABC’s accomplishments for 2011:

• provided presentations to children

• awarded 9 bursaries, at $1000 each,
to students living with CP to assist with their post-secondary education • assisted 11 children and adults with funds to attend a special needs camp of their choice – total funds dispersed - $4,400 • contributed $2000 to 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.

from kindergarten through high school at more than 26 different schools on topics ranging from inclusion to etiology, CP and the aging process, and succeeding despite challenges in life. • updated the website as of Feb. 2011. We provide general information about cerebral palsy and link people with others living with CP. • received over 393,000 hits on our website since January 2011!! Clearly, we are connecting with people living with CP and their families. We are also linking individuals with groups supporting those with Cerebral Palsy. • connected with people through facebook and twitter • received over 300 requests for information throughout BC, across Canada and as far away as Nepal, Poland, Mexico, Australia, South Africa, France, Iran, United States and India. The CPABC operates with three wonderful part-time staffers: Feri Dehdar (Director of Programs and Administration), Tammy van der Kamp (Family and 1

CPABC news

FALL 2011

Individual Support Worker), and Wendy Hawryzki (Administrative Assistant). We are affiliated with United Cerebral Palsy. This allows us to access a wealth of information on all aspects of CP; as a result, we have improved our ability to respond to inquiries for information and support. Through 2012, The CPABC Board will be focusing on two priorities: 1. Improving the Association’s connections, with: You as members • We want to hear from you about your needs and wants • We want to know what you enjoy about CPABC • What you would like to see offered • To help us with this, we will be distributing a survey for your input

2. Expand the Advocacy component of CPABC:

• We want to be able, and ready, to

assist our members affected by the continuing government cutbacks • Continue and build upon CPABC´s Individual and Family Support Worker position • Eventually hire more advocates to meet the increasing need for this service by our members These two priorities will provide the necessary focus the Board needs to move CPABC forward and to better respond to your needs and concerns as members. We need your help as members and donors to bring reality to these priorities. We ask that you consider CPABC as part of your 2011 holiday and Christmas offering. We encourage you to make a donation, maybe even a larger amount than your usual contribution. Consider a commitment to making regular monthly contributions. Every dollar - every cent, will get us closer to reaching our goals and to serve you better. Your donation will allow us to fund campers living with CP, persons with disabilities to continue post secondary education, purchase books, print our booklets, update manuals, maintain our toll-free inquiry line, continue our Roundtable Newsletter and our other services. Please see the donation form on the last page of this Newsletter. What can you contribute?? We are always very appreciative of your support! The CPABC’s Board of Directors and staff wish you and your family all the best during the holiday season and success and happiness for 2012. Stay safe and have a happy new year. Your President, Craig Langston

Spotlight

on our Volunteer

Matthew Toom
Cerebral Palsy Association of BC

• Nov. 09/2011, the Board met with

Other CP Associations across Canada

If you have visited our website at www. bccerebralpalsy.com you have seen the many changes brought about by the hands of Matthew Toom, who has been quietly working behind the scene since early 2011. He has booked over 95 volunteer hours working on our website - tweaking this, updating that and dealing with various web ‘issues’ that arose. A couple of Matthew’s projects were the creation of a searchable/browseable library. This feature has made it easier for our members to easily look through available library resources without coming into our office. Matthew is also responsible for getting our text-to-speech function, for the hard of hearing, up and running. The Cerebral Palsy Association is grateful for all that Matthew has done for us over the past few months, including the training of two of our CPABC staff on basic Joomla web site maintenance. Matthew has currently applied at UBC’s and McGill Schools of Medicine. He will be a great miss when he leaves us. We wish Matthew all the best in his future endeavors.

Janice Bushfield, Executive Director for the CP Assoc. of Alberta • We discussed our core services, the clothing program and other fundraising ideas • We also discussed the need to connect with our members • It was a very productive meeting and we look forward to ongoing dialogue with her Other BC disability organizations • We will continue to be active with the Emergency Preparedness and Planning Working Group, led by the BC Coalition of People with Disabilities and representation from several other disability organizations • We will continue to support the need for better Wrongful Death Legislation in BC

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Bursary Recipients for 2011!
University. “Samantha never uses her disability as an excuse for late or substandard submission”, states Capilano University’s Dr. Sandra Enns, Sociology Instructor.
Samantha Riesco Josh O’Brien Kathleen Dorsey Ryan Monita Conan Winkelmeyer

Conscientious, positive, hard-working, industrious and inspiring these are some of the words that were used to describe this year’s bursary applicants. Phrases such as exceeds expectations, exemplary work habits, and excellent attendance were found in each and every letter of recommendation. These applicants all stand out in a crowd academically and socially. Many of them have put in countless volunteer hours and none of them use their disability as an excuse to turn out less than outstanding work. These 8 young people come from around the province - Prince Rupert, Gibsons, Fort Nelson, Campbell River, North Vancouver, Nanaimo, Victoria and Williams Lake and range in age from 18 - 21. Each were chosen by our Bursary Committee to receive a $1000 award. James Jordan is in the business Program at Camosun College, in Victoria, with his view on obtaining a law degree. “I will continue to take on all the challenges life has to offer and find a positive way to do things the best way for me, in my own way.” Sherdan White is working part time to support his studies in Business Administration at Vancouver Island University. “I have always viewed my cerebral palsy as less of a disability and more of an opportunity to show others that someone with cerebral palsy does not have to be held back by it.” Kathleen Dorsey has the “strength and

determination to do whatever she’d like with her future”, said riding coach Michelle Meacher. At the moment writing is in the cards. Kate is attending Capilano University, part time, and majoring in creative writing. Ryan Monita “makes teaching a genuine pleasure”, states M. Hoffman of Columneetza Secondary School. Ryan is currently in his third month of the Aircraft Maintenance Engineering Program at Northern Light College in Dawson Creek. It is a 15 month program followed by 2 ½ years of apprentice work. Rebecca Dallas Bennett was accepted in the faculty of sciences at UBC. She currently plans to pursue a doctorate in Human Genetics. “I am very appreciative of the CPABC of having this money available for differently – abled youth like myself, so that we can further our education.” Conan Winkelmeyer is in his fifth year of university study working towards a major in education and psychology. His end objective is to create a summer camp for kids at risk and kids with disabilities. “I have set out to be an example to others and help improve people’s understanding of what individuals with disabilities face.” Samantha Riesco would like to become a service dog trainer for people with disabilities. She is currently in the Arts and Sciences program at Capilano

Josh O’Brien is interested in software development. He is working on his Computer Technology Degree at Northwest Community College and will then continue his studies at BCIT. He plans to become a game designer and is well on his way having formed a small independent developing team which has been creating short games for two years. As Ms. Burgess from Charles Hays Secondary said, “Josh has never let his physical challenges hold him back”. The CPABC would like to acknowledge that it is only because of the continuous and gracious support of the Kinsmen Foundation that we re able to help so many students pursue their dreams. Thank you Kinsmen Foundation! Your cheque for $10,000 presented to us, by Philip Jewell, at our September AGM is the foundation of our bursary program.

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CPABC news

FALL 2011

DUTY OF

HEALTH PROFESSIONALS
TO DISCLOSE

ADVERSE EVENTS
First, the dodge is based on disclosure that is watered down, vague, and noncommittal. Common jargon includes language such as unfortunate, complications, difficulties, the baby didn’t do very well, the baby wasn’t able to get the oxygen from the mom, etc. - it’s artfully crafted language which misses the goal of frank disclosure, but is close enough to the line to prevent those responsible for disclosure from being held accountable either for the harm or the non-disclosure. It’s all well and good to have codes of ethics and laws regarding a duty to disclose, but when there’s no way of holding healthcare professionals accountable, we have the unsatisfactory reality in which medical consumers find themselves. Second, the dodge is based on poor definitions of the extent to which information must be disclosed. Nowhere, is it spelled out that health professionals need disclose there may have been carelessness that caused the harm. The duty extends to disclosure of information that there was harm, not what might have caused it and certainly not that anything they did might have caused the harm. Third, the dodge is based on the timing of the disclosures. During initial disclosure meetings health professionals get away with saying its too early to say what happened. This is a problem because the real internal investigation, which provides real answers, is shielded from public view by provincial law.

By Don Renaud, Lawyer - CPABC member & former Board Member

This should all be very simple. The health professional is in a power position vis a vis the patient. As such the relationship between patient and health professional is one based on trust. The patient must trust that health professionals will act in the best interests of the patient - to put the patient’s interest above their own. The power position of the health professional is grounded on vastly superior knowledge. When things go badly, anything less than full disclosure of both the mechanism of injury and the various reasons why the injury may have occurred, would ignore the ethical basis underlying the trust relationship. This is simple and obvious to the patient. It needs to be codified for health professionals. Various ethical codes, such as the Canadian Medical Association’s Code of Ethics states that should harm occur, it must be disclosed to the patient. From a legal point of view, there is also an obligation to disclose medical mistake. If a lawsuit ensues and there is a finding by the court of a failure to disclose, harm caused by the nondisclosure may result in an award of damages to the injured person. Although the patient has both a moral/ ethical entitlement and a legal right to know the circumstances of an unexpected medical catastrophe, the dodge comes in a variety of ways.

Provincial disclosure law in BC ultimately brings us to section 51 of the Evidence Act. This section provides for committees to be approved or established by hospital management to investigate care or practice within the hospital. It is illegal for anyone to even ask any question or seek production of any document, relating to the investigation, conducted by such a committee. Disclosure of any information, record, or finding by a committee is prohibited except under strict circumstances and certainly not to the public or even the patient involved. So for the final dodge - the law prohibits Post Analysis Disclosure. That is to say, in the end, they can’t say what happened because of provincial non-disclosure laws. If this doesn’t make sense to you, consider what author Tom Clancy said: “The difference between fiction and reality is that fiction has to make sense.”

Change
is in the

Air

At our AGM in September, the announcement was made that two members of the board, Elizabeth Calder and Danielle Guertin, had made the decision to step down. The staff and Board of Directors would like to thank both these ladies for the many volunteer hours they have contributed to the Association. Best wishes to you both as you find new ways to contribute to your community. Elizabeth has been with the CPABC for about 20 years, and has held
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CPABC’s 57th AGM spotlights
The Cerebral Palsy Association of BC (CPABC) welcomed special guests Sarah Yates-Howorth, Dr. Nancy Vertel, and Phillip Jewell to its 57th Annual General Meeting at Bonsor Recreation Complex in Burnaby, September 22. Ms. Yates-Howorth is a successful Winnipeg author whose work reflects an intimate understanding of disability and issues related to the challenges of living with cerebral palsy (CP). Ms. Yates read an excerpt from her latest work, Lucky Lou gets Game, a youngadult novel starring a seventeen year old heroine named Lucky Lou who lives with CP. In the story, Lucky Lou has to take on her entire neighborhood so she can live her life to the fullest. With the help of friends, family, and the game of baseball, she wins her fight, and learns to advocate for herself in the process. Ms. Yates- Howorth also shared her thoughts on advocacy and what it means to her. Ms Yates-Howorth’s other books feature
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a child whose cp comes with speech difficulties. Can’t You Be Still? and Here’s What I Mean to Say… are books that showcase strong disabled role models that children with or without disabilities can relate to and learn from. Ms. Yates-Howorth has also appeared on several television programs including Chicago’s ABC-TV News, Disabilities with Karen Meyers, and on Winnipeg’s Shaw TV. She has been featured in articles in the Winnipeg Free Press, Toronto Star, Good News Toronto and many other publications. She has also developed story-based puppet shows for children and adults that have been performed in hospitals, schools and libraries across Canada and the United States. Ms. Yates-Howorth uses her talents as a writer to advocate for people who have disabilities, and to inspire people with-or-without disabilities. For more information about Ms. Yates-Howorth, see www.gemmab.ca Dr. Nancy Vertel, our other featured guest for the evening, gave an informative overview of dentistry for children

Kinsmen Check Presentation

with cerebral palsy and other special health needs. She spoke about some of the common dentistry issues that can occur, and some of the unique equipment used to overcome those issues. She also outlined accommodations sometimes used by dentists to make the whole experience of visiting the dentist less traumatic, and provided some great tips on how parents and other caregivers can best work with dental professionals. Dr. Vertel is working as a Trainee Clinical Investigator at the University of British Columbia. She is in her 2nd year of study working towards an MSc in Craniofacial Science & Pediatric Dentistry. Questions? Contact her via vertelna@ interchange.ubc.ca . The CPABC was also happy to welcome Kinsmen Vice President Philip Jewell, who presented the Association with a generous donation of $10,000. Without the support of organizations like the Kinsmen Foundation, the CPABC could not offer its members the postsecondary opportunities afforded by the Tanabe Bursary. Rounding out the evening, some of this year’s Tanabe Bursary recipients James Jordan, Dallas Bennett and Tara Kowalski were on hand to express their appreciation, and share about their plans for the future. Once again, the CPABC Annual General Meeting provided a great opportunity for members to meet, network and socialize. 5

many positions - her latest being a member of the Bursary Committee. She is a high school counselor in Fort St. John and the president of the local CP Sports Association. We are grateful for the many years she has offered her advice to the Association through telephone conference meetings, emails, telephone calls and visits to the office. Danielle Guertin is a Vancouverite who joined the board in 2007. She has diligently been attending monthly board meetings and offering her input ever since. Danielle has a background in physiotherapy but currently works for a pharmaceutical company. Our AGM brought two new faces to our board - the mother and son team of Janice and James Jordan from Victoria. James may be a familiar name to some of you as he is a past recipient of our Tanabe Bursary. And on a final note, the Association was pleased to once again welcome Carol Stinson, from Burnaby, to our Board of Directors. Carol currently works part time with Burnaby Association for Community Inclusion and has been a long time member of our Association.

CPABC news

FALL 2011

It Was a Blast! I LOVE CAMP!
T. LeMere

CPABC Summer 2011

Camp gave my son a sense of independence; something he really needs as he gets older. - C Fregin Our girls were happy and full of joy. Each day they would come home exhausted but with big grins on their faces. - S & O Aziz These are just a couple of the uplifting comments we love reading at the Cerebral Palsy Association regarding our Special Needs Camp Program. Since its inception in 2008 the BC Cerebral Palsy Association has been able to offer financial assistance to 40 people: ten in 2008, eight in 2009, eight in 2010, and 14 in 2011. At camp it is so much easier to be happy and free! - Anja Camp was awesome! Thanks for helping to send my support worker with me. I was too nervous to go to camp by myself. - J Friesen Comments like these help us to know we are making a difference in the lives of others, one person at a time. If you would like to help make dreams of camp, for special needs kids and adult, become a reality you can donate to our Camp Program by calling 604-408-9484 or 1-800-663-0004 or online via this link http://www.canadahelps.org/CharityProfilePage.aspx?CharityID=s2736
Anja

Highlights

With school out in June, CPABC’s Family & Individual Support Worker Tammy van der Kamp’s presentation schedule slows down a bit. July was her vacation month and she spent most of her three weeks catching up on some rest and relaxation at home, and taking PADS Service Dog Breeze for walks to the off leash park to spend time with her doggie friends. The summer wound up with a mostly quiet August, but September came with its usual wave of presentations and new projects. On September 15, Tammy and CPABC’s President, Craig Langston, were on hand at the Burnaby Lougheed Lions Club dinner to accept a generous donation of $500 for the Association. Tammy kicked off the autumn round of presentations and fairs at Douglas College on September 28, where she spoke to SEA (Special Education Assistant) students, with a strong focus on what inclusion ought to mean. She discussed issues like disability etiquette, and encouraged students to use empathy when working with children who have disabilities. Tammy appreciated the opportunity to share a few anecdotes about her own experiences as a student with a disability in the early days of inclusion. This fall also brought a first for CPABC with Tammy’s application video for

UBC’s Dollar Project, which qualified CPABC for a chance to win a $500 donation to expand the Disability Awareness Presentation Program for elementary schools. The UBC Dollar Project is one of the most active clubs on the university’s campus; it promotes collective growth, leadership, and a sense of social responsibility through recognition of small acts of kindness, and a belief in the importance of tiny improvements over time. Besides the initial qualifying video pitch and written application, the UBC Dollar project involves attending the club’s annual conference “The Briefing” on January 25, 2012 to present a five minute pitch to sway participants to vote for her cause. Tammy will be competing with four others for the prize. The CPABC’s Disability Awareness Presentation Program for elementary school students mainly works to break down attitudinal barriers in school-aged children by using humor and personal stories to lead students to the realization that disability is just another aspect of human diversity. Finally Tammy visited Anmore Elementary School in Coquitlam on November 16 and Langara College in Vancouver on November 22 with her disability awareness presentations. For more information, or to book a presentation, please contact the Cerebral Palsy Association of BC at 604-408-9484, or see the website, www.bccerebralpalsy.com

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Disability and Life Insurance Legal Questions and Answers Series
By CPABC member, Halldor K. Bjarnason, Lawyer - Access Law Group

because my disability was not a factor. When it comes to life insurance, the disability in itself is not necessarily a factor. The issue is the risk of death - and some disabilities do cause a reduced life expectancy. However, if the insurer has a mistaken idea about the nature of the disability, it could result in a refusal to issue a policy. If your application for insurance is rejected, or your premium seems very high, it may be worth challenging the insurer on its decision. This is where belonging to a group insurance plan can be really helpful. Threatening to get annoyed at the insurer may not have much impact. But threatening to convince the whole group to take their insurance elsewhere can have a significant persuasive effect. 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. I always welcome questions to be included in future columns. Please email them to me at: Halldor@Trustlawyers. ca www.Trustlawyers.ca

I heard that a person with a disability is not eligible for life insurance, true? Many people use life insurance as a part of their estate plan. Insurance can be used for a variety of purposes including: leaving a legacy for dependents, covering debts, and/or helping the community through providing a payout to a favorite charity. I have been asked: “is it true that people with disabilities cannot get life insurance?” We can start to find the answer with another question: “what is the disability?” Life insurance is, in its simplest form, a contract. You pay the insurance company a certain amount of cash, and in exchange, the insurance company agrees to pay your estate (or whoever else you ask them to pay), a certain larger amount of cash if you die during the term of the agreement. The complicating part is, the insurance company wants to pay you as little as possible - so they make a bigger profit - and you want to get as much money as possible. Put another way, it is essentially a form of legalized gambling - you are placing a bet with the insurance company as to whether you will die. If you ask an insurance company to insure your life, it will assess the “risk” of your death, and if concerned that you have a higher than average risk, it will either: a) charge you a higher premium, b) prohibit payment if death is caused by certain factors, or c) decline to insure you. As provincial human rights codes do not cover insurance issues, the only thing that insurance company needs to focus on is how high the risk is that you

will die during the term of the policy. This is where disability kicks in. If your disability is such that it will cause you to die very soon - such as a heart condition that has already caused three heart failures in the past year - you likely won’t get insurance. Alternatively, if your disability is psychiatric in nature and there is a history of suicide attempts, the insurer might agree to sell you insurance, but with a condition that it won’t be paid if your death is self-inflicted. Finally, if your disability is such that your life expectancy is reduced, but death is not imminent, the insurer might issue a policy, but charge a higher premium based on your reduced life span. The problem with this approach is that the determinations are not always accurate. The risk assessments are only as good as the data that the insurance company is relying upon. As an example, I have cerebral palsy. Having a large mortgage and a young son who will be financially dependent on me for a long time, life insurance seemed like a wise idea. Unfortunately, the insurer wouldn’t issue a policy for me, stating that I was “too much of a health risk”. I found the response a bit odd, so I pushed them into disclosing how they concluded that I was a risk. The company’s explanation was that as I had a life expectancy of 35 years, I should have died a few years ago. After further discussion, it became clear that the statistics they were relying upon had been compiled during the mid to late 1950s. The life expectancy statistics for a person with cerebral palsy are considerably different today. After realizing their error, a life insurance policy was issued for me with a regular premium,

Special

Thanksㅁto

Cerebral Palsy Association of BC would like to thank SAFEWAY for their generous donations of food and beverages to our 2011 AGM, held on September 22, 2011 at Bonsor Community Centre. 7

CPABC news

FALL 2011

Ron Wyant - We

Thank You!

Special Thanks
MANY THANKS to the following for their generous financial contributions in 2011:
Cerebral Palsy Association members and individual donors
Douglas Road School Burnaby Lougheed Lions Club One Square Foot LTD Suncor Energy Foundation The Kinsmen Foundation of BC & Yukon The Hamber Foundation Royal Canadian Legion Branch # 20 Discovery School Activity Fund BMO Employees Charitable Foundation Gibbs-Delta Tackle Royal Canadian Legion Branch # 170 Wawanesa South Coast Plumbing & Heating Provincial Employees Community Services Fund Discovery School Activity Fund Face The World Foundation Every Body’s Gym Haebler Construction Donald J. Renaud Law Corporation The Victoria Drive Community Hall Assn 2010 Employee Charitable Giving Program

It is with great sadness that the Cerebral Palsy Association of BC bids one of its long time volunteers farewell. Ron Wyant began with us about ten years ago when we were at 317 Columbia in New Westminster. He had just completed a full time college program, in computer bookkeeping, and was looking for a place do to his practicum. The CPABC was “the place”. The rest is history. Ron was responsible for all things to do with membership and donations - updating lists, sending thank you letters and issuing tax receipts. He was also responsible for that dreaded monthly task of reconciling the bank statement. Every Tuesday Ron would faithfully show up at our downtown office to volunteer 5 - 7 hours of his time. If there was more to be done, you could count on Ron to be there. He was always an extra pair of helping hands at ALL office functions - annual general meetings, open houses and information fairs where Ron had a chance to interact with the public on behalf of the Association - something he thoroughly enjoyed. After so many years serving, Ron felt that it was “time to go and let someone else enjoy the opportunity.” It is rare to find such a dedicated volunteer. Ron, the staff and members of the board all thank you for serving so faithfully. You were an important part of our team. You will be missed!
(Ron is 63, lives with Cerebral Palsy and is a long time member of the Cerebral Palsy Association of BC.)

IN MEMORIAM
CPABC extend sincere sympathy to all who have lost a loved one. We thank you for designating CPABC as the charity of choice to receive In Memoriam gifts. All contributions are truly appreciated and acknowledged.

IN APPRECIATION
“There’s Nothing Stronger Than The Heart Of A Volunteer.” CPABC would like to THANK everyone who donates their time and energy to our Association. Board and office volunteers make a vital contribution and we acknowledge the countless ways in which each volunteer helps our members, our organization and our causes.

BOARD MEMBERS
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
CRAIG LANGSTON President TRISH MCKAY Vice President ANDY YU Treasurer CAROL STINSON Secretary RONALD BLACKMORE TERREANE DERRICK JANICE JORDAN JAMES JORDAN 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

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

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