Summer/Fall 2013 Volume 28 Number 2
18 Home Care
Letters to the Editor
In the News
Meet the Staff
On Your Behalf 10 CPA (Alberta) Advocacy 11 Are You Driving Legal or Illegal? Sports 12 Power Hockey
Editor .................................. Betty MacIsaac Assistant Editor .................. Zachary Weeks Layout/Design ......................Kyle Thompson
Spinal Columns is published four times a year by the Canadian Paraplegic Association (Alberta). Advertising rates available upon request. Ideas, submissions, requests, suggestions and letters are always welcome. Address them to: The Editor, Spinal Columns Canadian Paraplegic Association (Alberta) #305, 11010 - 101 Street Edmonton, Alberta T5H 4B9 (780) 424-6312 Material printed in Spinal Columns may not be reproduced without written permission from the Canadian Paraplegic Association (Alberta). We neither endorse nor guarantee any of the products or services advertised within Spinal Columns. Readers are strongly urged to thoroughly investigate products/companies before purchase. Spinal Columns is available in alternate formats by contacting our office as listed above.
Accessibility 22 Multi-Storey Buildings and Accessible Exits At a crossroads in Alberta. FEATURE STORIES
14 The Road Less Travelled
Recognition 23 Chair-Leaders 24 Red Carpet Affair 2013 Health 26 Talking About Dying Won’t Kill You Opinion 28 From My Perspective Active Living 30 Outdoors Unbound Travel 32 Travelling With Delhi 34 New York on a Shoestring
One man’s journey into a career of caregiving.
Regional News 35 What’s New in Alberta
16 Life in the Fast Lane
Library 38 Eat Well, Live Well
Publications Mail Agreement #40011327 Return undeliverable Canadian addresses to: Canadian Paraplegic Association (Alberta) #305, 11010 - 101 Street Edmonton, AB T5H 4B9 E-Mail: firstname.lastname@example.org ISSN 1195-5767
Rob Parsons has always lived life in the fast lane.
editorial Challenging times for those who already face greater barriers to community participation!
h i s past spr ing a nd summer have been a tumultuous time for persons with disabilities and the aging population who rely on the stability of government funded services. Not only have the services provided by CPA (Alberta) been cut back, decreasing the amount of information, support and programming available across the province, but other system funding changes have impacted their access to homecare, which indirectly impacts their access to education and employment. There seems to be a growing trend related to lack of consultation with examples such as privatization of homecare and changes to disability transportation services. I have enjoyed the friendship of many persons who experience physical limitations over the past 20 years and I have listened to their building frustrations on a wide range of issues. I feel like the commitment to inclusive communities and equitable opportunity is not receiving the attention it deserves. We all recognize that unusual economic challenges have prevailed this past year; we cannot however, stray from the goals of social and economic participation for all. This is an optimal time for the three levels of government to collectively work together to ensure that the voice of the disability and aging community is clearly heard. Barriers can result when system changes take place without consultation and participation by persons who are impacted by the changes. Recent funding decisions appear to be made on the basis of saving dollars in the short term without consideration of future repercussions. Research or best practice based rationale needs to be shared with consumers as to how decisions were made and include viable opportunities for feedback. What can we do about this? Make every voice count – including your own. CPA (Alberta) and other organizations representing persons with disabilities have a responsibility to speak out about the issues but, more importantly, individuals need to speak out about the impact they experience. We didn’t have the opportunity to inform and influence regarding some of the current changes but we can and must respond. You can: • Tell YOUR story of how the changes impact you to all who are competing in any upcoming elections. • Utilize social media (Facebook, Twitter, blogging) as a platform to address your own particular situation and/or to provide transparent and constructive feedback. • Contact your MLA and/or MP. Let them know that you were not consulted before changes were made, that you could have provided advice and that short term budget gains through service reduction will have long term consequences on your health and your ability to participate in education, employment and/or volunteer work. • Share your story with CPA (Alberta) through our Facebook and Twitter (@CPAAlberta). By collecting your stories, we can do a better job of informing and hopefully influencing future policy and program changes.
Teren Clarke Executive Director
Canadian Paraplegic Association (Alberta) Toll Free: 1-888-654-5444 www.cpa-ab.org Find us on Facebook and become a fan! Watch videos on our Youtube channel: www.youtube.com/cpaalberta HEAD OFFICE #305, 11010 - 101 Street Edmonton, Alberta T5H 4B9 Telephone: (780) 424-6312 Fax: (780) 424-6313 E-mail: email@example.com Executive Director: Teren Clarke CALGARY OFFICE 5211 4 Street NE Calgary, AB T2K 6J5 Telephone: (403) 228-3001 Fax: (403) 229-4271 E-mail: firstname.lastname@example.org RED DEER OFFICE #103, 4719 - 48th Avenue Red Deer, Alberta T4N 3T1 Telephone: (403) 341-5060 Fax: (403) 343-1630 E-mail: email@example.com GRANDE PRAIRIE OFFICE 10 Knowledge Way Grande Prairie, Alberta, T8W 2V9 Telephone: (780) 532-3305 Fax: (780) 539-3567 E-mail: firstname.lastname@example.org LETHBRIDGE OFFICE Telephone: (403) 327-7577 Fax: (403) 320-0269 E-mail: email@example.com LlOYDMINSTER OFFICE E-mail: firstname.lastname@example.org MEDICINE HAT OFFICE 26-419 3rd Street SE Medicine Hat, Alberta T1A 0G9 Telephone: (403) 504-4001 Fax: (403) 504-5172 E-mail: email@example.com ST. PAUL OFFICE Box 653 St. Paul, AB T0A 3A0 Telephone: (780) 645-5116 Fax: (780) 645-5141 E-mail: firstname.lastname@example.org FORT McMURRAY Gregoire Park Centre 194 Grenfell Crescent Fort McMurray, AB T9H 2M6 Tel: (780) 743-0307 Fax: (780) 743-4563 E-mail: email@example.com CPA (ALBERTA) BOARD OF DIRECTORS Ned Shillington, Chair Dale Williams, Past Chair Eleanor Sugarman, Vice Chair Raymond Royer, Treasurer Margaret Conquest Harvey J. DeCock Shamel Elsayed Kent Hehr, MLA Timothy Hill Ron Jewitt Paul Nemetchek Souheil Saab Mark Wilson
Mission Statement To empower persons with spinal cord injuries and other physical disabilities to achieve independence and full community participation.
LETTERS TO THE
EDITOR I, Scott Douglas, am a paraplegic due to a snowmobile accident in December of 2004. I remember the trauma I faced at the time of my wreck. I want to thank CPA for being there for me when I felt there was no hope left in my life. As I remember all the thoughts going through my mind, I can still remember when Margaret Conquest came to visit with me and how much of an inspiration you were to me. Also, Doug Manderville, you were a big inspiration to me. After visiting with these dear folks and then getting acquainted with CPA, my life all of a sudden seemed very hopeful. Thanks to CPA and all the dear people who came to tell me that life is still worth living and, you know, it sure is. I am a licensed auctioneer doing lots of auctions, which I love doing, but if it wasnâ€™t for CPA this would have never happened. Thank you CPA for all you do. Scott Douglas
WEEKS APPOINTED TO ADVISORY BOARD
Congratulations to Zachar y Weeks, CPA (Alber ta) Community Development/Communications Coordinator on his recent appointment to the City of Edmonton Advisory Board on Services for Persons with Disabilities.
DATS CHANGES CANCELLATION RULES The Disabled Adult Transportation Service (DATS) announced it will be changing the amount of notice required to cancel a trip from 30 minutes to two hours or more (effective September 1, 2013). If you have any comments or concerns regarding this change, they can be forwarded to CPA (Alberta) at firstname.lastname@example.org or you can contact DATS directly at 780-496-4567 or email@example.com.
KWADSQUAD KwadSquad, aka Morrie Ripley and Chandra Round, have been a busy team this summer! They not only completed the Great White North ½ Ironman Triathlon in Stony Plain in July, but also completed the full Edmonton Marathon in August, a 5 km fun run and a 12 km family ride as part of the Tour of Alberta festivities. The triathlon was the most gruelling as they battled wind, rain, and severe bike malfunctions, however still finished with a respectable time of just over 8 hours. They had a much better race for the Marathon, with nothing but great weather and a superb finishing time of only 4 hours and 30 minutes! In between races they are helping to spread the word about KwadSquad and their mission, to create awareness about the abilities of those with a disability, and break down the barriers for everyone to participate in endurance events. They have been featured on Global TV, CTV, Breakfast TV, CBC radio and the Spruce Grove Examiner. To find out more about KwadSquad, or find out how you can borrow the equipment to participate in a running or cycling event, visit www.kwadsquad.com or email firstname.lastname@example.org.
IN MEMORIAM Gregory Bulldog Pauline Marcoux Roy Olsen Robin Sutherland Albert Willier Michael Willier won the Edmonton Mayors Award for Self-Advocacy.
MAYORS AWARD FOR SELF ADVOCACY Long-time CPA (Alberta) member and peer mentor, Michael Willier, was presented with the Edmonton Mayors Award for Self Advocacy on May 22, 2013. The Award goes to a deserving citizen in the community who exemplifies leadership. Michael demonstrates self-advocacy by sharing his issues and needs in Edmonton. As a result of a spinal cord injury in 2007, Michael’s experiences serve as a springboard for discussion and advocacy opportunities. “A lot of disabled Aboriginals who live in isolated communities, may have to move to a city (following an injury). It can be a big culture shock” he says. “My goal is to inspire people with disabilities to realize there are opportunities out there for them, as well as to advocate for themselves”. Michael emphasizes that being visible in the community allows people to understand the issues faced by persons with disabilities.
HONORARY DOCTOR OF LAWS Louise Miller, University of Alberta (U of A) alumna, worked as a registered nurse for 20 years and taught at the U of A for 32 years. She co-founded the Spinal Cord Injury Treatment Centre Society in Edmonton and served as a leader for numerous associations and foundations. In 2000, Miller was appointed as a member of the Order of Canada and most recently received an honorary doctor of laws from the U of A.
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STAF STAFF PROFILES ROFILES
Meet the new Manager of Programs and Services in the Calgary office, Greg Kern. He brings a wealth of knowledge and experience to the position as a graduate of the University of Alberta (MBA), Lutheran Theological Seminary (MDiv), University of Victoria (BA, Psychology and Sociology) as well as 16 years of service in the Evangelical Lutheran Church in Canada. Excited about this new challenge and learning opportunity to be part of a team that reaches out to people with spinal cord injuries (SCI) and other physical disabilities, Greg plans to: • Affirm, value and respect all staff, clients, families, volunteers, business leaders, health care providers, donors, sponsors, granting agencies, foundations, related
not for profit agencies and local political representatives; • Communicate to all stakeholders the importance of focusing on the needs of people with SCI, their families and the communities where they live; • Build a culture of fun, resiliency and trust with the Calgary team so that both staff and clients are able to reach their potential and rebuild their dreams; • Learn from courageous staff engaged in helping people through client services, peer support, community development, special events, multi-media, aboriginal services, community access and the CPA (Alberta) SCI Fitness and Wellness Centre in Calgary; and • Personally change through greater insights into the lives of people with SCI and other disabilities. As a first time participant in the Chair-Leader’s Enabling Access event in Calgary on May 3rd, Greg says “I discovered, once again, the fear of vulnerability. Why are we so uptight with our weaknesses and fragility? I’ve re-discovered that all people, regardless of trauma and mobility issues, have important gifts and skills to offer others! After a day of wheeling around with a sore left cheek (not the one on my face), I have a better understanding of why CPA (Alberta) promotes elimination of barriers!” Greg also has a diverse sporting background, playing Junior A hockey with the Calgary Canucks (1981) and soccer with the Canadian World Cup and Olympic teams (1984-88). He is the proud father of 8 year old twins (Marcus and Sophie) and a 6 year old (Mateo) and also volunteers in Calgary as hockey and soccer coach.
ARE YOU DRIVING
LEGAL OR ILLEGAL ILLEGAL? ? by Marilyn Erho
fter a change in your medical or physical condition, there are often many questions, particularly regarding driving. Will I ever drive again? Is my license still valid? What do I need to do to get a valid drivers license? Here are a few questions and answers that may be helpful.
WHEN DOES MY LICENSE EXPIRE? Licenses are renewed at different times. As soon as there is a change in your physical or medical condition, you are required, by law, to update your license and report the change to Alberta Transportation’s Driver Fitness and Monitoring Branch. All driver licenses require renewal every 5 years or sooner if Alberta Transportation has deemed that a persons’ capacity to drive safely is at risk of change and therefore the renewal may be required on an annual basis including a physician signed validation of driving capacity stability. This will be noted on your valid license.
WHO DO YOU CONTACT TO REPORT A CHANGE IN YOUR CONDITION? Individuals are required by law to report their change to: Driver Fitness and Monitoring Branch Alberta Transportation Main Floor, Twin Atria Building 4999 - 98 Avenue, Edmonton, AB T6B 2X3 Tel (780) 427-8230 Fax (780) 422-6612 email@example.com
WHAT HAPPENS IF YOU DO NOT REPORT? Individuals who choose not to report their physical or medical change place themselves and others at risk. If you are in an accident, your insurance may not cover you as your information is incorrect. Or, if you are pulled over, charges can be applied for driving with an incorrect license. If you experience a change in your physical or medical condition, you should report it to minimize the risk to yourself and others.
DO I NEED TO WRITE A LEARNER’S EXAM? If you had a valid license before a physical or medical change and you are within three years of your physical or medical change, you do not need to rewrite the learner’s exam. If it has been more than three years since your physical or medical change, you will need to rewrite the learner’s exam. If you have never had a valid driver’s license, you need to complete the learner’s exam and go through the one year probation period before a Driver’s Exam can be completed.
ARE THERE ACCESSIBLE VEHICLES TO COMPLETE YOUR DRIVER’S LICENSE? Yes. Calgary and Edmonton both have vehicles that are available, depending on your ability to transfer to a vehicle. Calgary has a car that comes complete with hand controls; but you need to be able to transfer into the driver’s seat independently (may use a transfer board). In Edmonton, the Glenrose Rehabilitation Hospital has a Driver Evaluation and Training Service. They have two accessible vehicles for training purposes: a fully accessible van with hand controls, ramp, tie down system so you can drive from your wheelchair; and a car, complete with hand controls . You do need to be able to transfer independently into the car (may use a transfer board). They can be reached at 780-735-7946.
IS FUNDING AVAILABLE? Funding is available if all other funding options have been exhausted and if the driver training is completed in Calgary. For more information on funding options and to see if you will qualify, call Marilyn Erho at 403-228-7434.
WHO CAN HELP ME? There are people who can help you with the driver training process and to make it as smooth as possible. For more information or to help you get safely back on the road, contact Marilyn Erho at 403-228-7434 or firstname.lastname@example.org.
Hockey by Kevin Lawson
o you love hockey? Do you use a power wheelchair? Do you dream of scoring the winning goal in the big game? Then the exciting sport of Power Hockey is perfect for you. What is Power Hockey you ask? Quite simply, it is the game of ball hockey adapted so that it can be played by people who use power wheelchairs. If you use a power wheelchair or know someone who does, you will recognize that it greatly limits recreational choices â€“ there just are not many sports opportunities available. The Calgary goal in the Power Hockey L eague (CPHL) is an inclusive sports league for anyone over 12 years old using a power chair in their daily life (includes men and women from a wide age range, from teenagers to players over 50 years old.) Over the 30 year span the league has operated in Calgary, it has featured a wide range of players. From
those with quick reflexes and good upper body strength to those who use chin controls and have no arm movement, all levels can not only play the sport, but thrive! The CPHL is not only a competitive sport but is also great at creating a social network for individuals with disabilities. It gives members the experience of a team sport (camaraderie, teamwork, sportsmanship) that well known sports leagues provide for their members. The CPHL can changes lives for the better; it provides people who use power wheelchairs with the opportunity to become legitimate athletes. Being able to play a competitive sport, with statistics, awards, referees, coaches, national and international tournaments and more is something many power wheelchair users may think is only a dream. The CPHL makes this dream a reality. For more information, go to www.powerhockey.ca.
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The Road Less Travelled: ONE MAN’S JOURNEY INTO CAREGIVING by Heather Lissel
Creative Commons photo courtesy of Jason Corneveaux.
ife is rarely a straight path from A to Z. The unexpected happens. We make choices that alter our course. Along the way we find ourselves asking “How did I end up here?” One of the biggest choices we make in our lives concerns our career. For Rodel Rayataza, being a personal care attendant (also called a “caregiver”) was an option he didn’t initially consider but one that he’s found very rewarding and has helped his family back home to live a better life. His experiences are inspiring and a good example of how taking the road less travelled can lead to success and fulfillment. Born in the Philippines, Rodel completed school and went on complete his degree in agricultural engineering. Like many students, he didn’t find work right away in his field, so he worked in the fast food industry. He excelled in his job, working his way up to a management position in Saudi Arabia, and then a franchisor back in the Philippines. In between, Rodel was involved in a vehicle collision and sustained an L3 spinal cord injury that left him paralyzed from the waist down. “I did my own therapy,” says Rodel. “I was in good physical shape and that helped me to recover.” Good fortune combined with hard work paid off for Rodel. In three months he was able to return to work. But the injury had changed him. “I decided to take caregiver training,” he says. Caregiving is a popular option for many Filipinos, both men and women. Like Rodel, many take jobs outside their country, working as caregivers for the elderly and persons with disabilities. Rodel completed the course and spent the next eleven years working in Israel with a variety of clients, the majority of whom were former soldiers with severe brain and spinal cord injuries. “It was rewarding to see their development every day,” says Rodel. That sense of accomplishment and contribution led him to decide that caregiving was the job he was meant to do. It was a very difficult decision as it meant he would be away from his family. Already he had spent more than 11 years away from them while in Saudi Arabia and Israel. But he was determined to give them a better life. “I just send them their monthly
allowances,” he says. “Being away from them is the pain that I am battling every day. I avoid putting their pictures in my room because it just escalates the burden that I feel inside. We just communicate through Skype and SMS. I missed a lot of family occasions like birthdays, anniversaries, graduations, school events, etc. But because of my determination to give them a better life, I chose to follow this path.” In April, 2011 Rodel moved to Canada where he continued his caregiving work. He now works with Zachary Weeks, Communications Coordinator at the Canadian Paraplegic Association (Alberta). They have a great personal and working relationship which is good, considering the amount of time they spend together. When asked about the relative advantages and disadvantages of having a male caregiver over a female caregiver, Zach states that it can be easier for men to relate to one another. “You become friends,” he says. “While a female caregiver might be more subtle and more in tune with your emotions, with a man you can share ‘guy talk.’ Men are usually more forward and direct.” Rodel comments that a man’s physical strength is also an advantage when it comes to providing care. Rodel is quick to note, however, that it isn’t his strength or the fact that he’s a man that makes him a good caregiver. “My philosophy is to help you by not helping you. If there’s something Zach wants me to do and I think he can do it himself, I tell him to try. I worked with a brain injured man in Gaza – a former tactical engineer and sniper who was shot in the forehead. He was angry and wanted to die. He rejected food. He would try to hit me. I turned it into a positive. I said ‘good, your arm is moving. Now try to kick me and make your legs move this time.” After two years, the former soldier was able to move his arms and could get around in a manual wheelchair. Not everyone could be as dedicated to his profession as Rodel. He puts in long hours, works weekends and nights, and sometimes needs to cut his personal time short to help Zach out. But those are the sacrifices that many who work in the healthcare industry make. Rodel sees his choice to pursue caregiving
feature ARE YOU CUT OUT FOR CAREGIVING? 1. I experience great satisfaction from helping others. 2. My friends and family would say that I am a patient and compassionate person. 3. I am a good listener. 4. I have enjoyable memories of time spent with seniors and people with disabilities. 5. I am dependable and rarely late for appointments. Questions adapted from www.homeinstead.ca.
2 Rodel and Zachary at Zachary’s wedding. as a stepping stone. He’d like his next move to be into physiotherapy. His job experience and his philosophy toward care will definitely be assets to him. He also holds onto the hope of one day bringing his wife and two young children here where they can finally live as a family. Summing up his thoughts about being a caregiver, Rodel says “it takes patience, patience, patience, patience.” He would recommend the job to others, adding that he’s glad to talk to anyone who is thinking about becoming a personal care attendant caregiver. He can be reached through Zachary Weeks at the CPA (Alberta) office, 780-424-6312 or email@example.com.
OTHER POINTS: • The going rate for a trained health care aide is between $15.00 and $23.00 per hour (source: WAGEinfo Alberta Wage and Salary Survey). • Rates for untrained, privately hired caregivers start at $10.00 per hour. • There are many agencies that will hire trained caregivers or train their own. You can find them by googling “home care agencies [your town]”. • Individuals looking to hire their own caregivers (not through an agency) list their needs on various websites. Just google “caregiver jobs [your town]”.
LIFE IN THE
FAST LANE by Christina Scott
ob Parsons has always enjoyed taking risks, from anically inclined,” says Parsons. “Once I started working on BMX biking in his teens to racing cars as a young cars it all just came naturally. Being able to weld and do stuff adult. Whether on the trail or the track, it seemed with any type of metal was essential for building cars and the there was no challenge too big to conquer. Even after kind of cars I wanted to build.” sustaining a severe spinal cord injury just a few short years ago, What Parsons had in mind wasn’t your average vehicle. In the 26 year old is more focused than ever, determined not to let 2005, a friend introduced him to drifting, a special type of raanything stop him from enjoying life in the fast lane. cing that involves a uniquely built car. Parsons wanted to build Parsons grew up in Lethbridge and became interested in his own. extreme sports at a young age. With this goal in mind, the following year, he returned to “I was definitely an outgoing kid” he says. “I was always into school to pursue certification as a journeyman welder. He graduriding pedal and BMX bikes. I just rode bikes all day.” ated from Lethbridge College in 2010. During his time at Allan Watson School, local cycling comDrifting involves two cars driving around a set course; one panies caught wind of Parsons’ talent and passion for the sport, driver acts as a lead car while the other assumes the role of the eventually agreeing to sponsor him when he rode competitively. chase car. The opponents will drive around the course, going “They would pay me in sponsorship sideways and creating as much smoke of parts and products that they manuWe did a demo inside as possible. The chase car attempts to factured (like) bike frames, pedals and put pressure on the lead car by following of B.C. Place, so that closely behind in an attempt to throw tires,” he says. “They helped me out was fun; I felt like a with deals to keep my bike together.” the lead car off and gain the advantage After high school, however, Parto win the race. Parsons says the sport rock star that day. sons’ interests changed. Following is more a showcase of skill as opposed graduation, he found a job in the construction industry; during to speed. He began drifting by participating in a series of practhis time, Parsons also began working with his father to bring tice events in Edmonton. in and repair imported cars from Japan as a way to make extra “Once his series started to get some traction, it started to money. become pretty popular around (southern Alberta),” he says. “That was when you could bring over cars from Japan that “Bigger name sponsors would sponsor the event (and) give out had a good body style,” he says. “So I started bringing in a bunch cash prizes.” of these cars with my dad, and that’s where I started tinkering After this, Parsons began attending events in Red Deer and with them.” Calgary. He says the project eventually turned into a passion, fueling “I would go to the Calgary practices every second weekend a desire to work with his hands. and I would drive at all the events,” he says. “I enjoyed every“I just got a passion for working on them because I’m mechthing about it: the preparation, the driving, the places I got to
feature go and people I would meet.” Parsons says one of the highlights of his racing career so far occurred in Vancouver at Monster Jam. “We did a demo inside of B.C. Place, so that was fun; I felt like a pretty big rock star that day,” he says. “(There were) 60,000 people (there), so it was big.” During Parsons’ first three years racing, he consistently placed first or third, only missing the podium once. “That was a highlight I felt really good about,” he says. Parsons says if there is anything scary about the sport, it’s the anticipation leading up to the event. “I’d say the scariest part for me would be waiting to go drive,” he says. “I felt very comfortable doing it and quite honestly, the cars are way safer than any motorbike out there.” The cars used are manufactured vehicles which are stripped down and converted to race cars. The vehicles must originally be street cars to be eligible in these competitions. Parsons says building a car for this purpose involves a lot of work. After the car is completely stripped of virtually everything but the frame, it is rebuilt to include elements like fibreglass panels and a new front end. The motor must be rebuilt, the wiring replaced and the vehicle needs to be repainted. Parsons has been working on his current car for six months. “There is no real way to put a time frame on building a race car because you are always improving it” he says. This car is different than anything he has ever driven in the past. Once completed, the car will be completely functional via hand controls. In June 2011, a dirt bike accident rendered Parsons a paraplegic. He sustained a T9 spinal cord injury when he lost control of the bike and landed stiff-legged on the ground. “I broke my back, legs, tibias, fibulas, femurs; I punctured a lung and broke a bunch of ribs,” he recalls. “It was pretty bad.” Parsons was airlifted via STARS Air Ambulance to Foothills Hospital in Calgary. There, he spent six months recovering. Parsons says although the incident affected him physically; mentally, he was unfazed. “(Considering) the things I did for fun, I knew there was risk in anything I did” he says. “If anything happened, I accepted it. It really wasn’t an issue for me. It was more just, ‘How can I recover quickly and get back to doing what I do?’” He adds recovery was simply about letting his body heal. Even after being released from the hospital, he says life remained fairly normal. “Mostly, I had to figure out how to do stuff differently,” he says. “There wasn’t much transition other than working out and staying as active as I could. Absolutely nothing changed for me, other than the fact that I have to crawl up or down the stairs.” Parsons’ goals haven’t changed either. He began thinking of ways to get back on the track while still in the hospital. He knew he wanted to build a hand-controlled race car, and spent a lot of time wondering how to make his dream come to life. “It was a lot of sleepless nights,” he notes. “I’ve gone through many different ways of doing it.” Parsons took inspiration partially from a driver in Japan who built a similar vehicle while implementing his own ideas as well. “I only have two limbs that work now so I need to be able to
Rob working on a race car in his garage. He hopes to have it completed this May. Rob is also a journeyman welder.
control the steering wheel, gas, clutch, shifting and e-brake all with one appendage,” he says. “I will have to control the steering wheel with one arm and everything else with the other.” Parsons began building the car after being out of the hospital for approximately eight months; “I thought that there was a lack of someone trying in this type of field that’s been in my situation,” he says. “I would like to start up a club for people that are in my situation to get back into a car like that again and drive around a track on their own.” Parsons also says he would like to continue racing while possibly making a career out of building cars. Another important goal for Parsons is to raise awareness about STARS Air Ambulance. Since his accident, Parsons has been a spokesperson for the organization, giving talks at local events in Lethbridge. “I give STARS huge credit for saving my life,” he says. “Without them, I wouldn’t be here today.”
At a Crossroads in Alberta by Teren Clarke
s a home grown Albertan, a former Registered Nurse and a 20 year participant in the delivery of community based services to persons with disabilities and persons with other progressive or
chronic illnesses, I feel compelled to weigh in on the changes taking place in Alberta, specifically around home care services, a division of Alberta Health Services (AHS). It would seem that home care services are moving in a direction that is contrary to federal policy, provincial policy, an abundance of literature on best practices in the Canadian context, and the grass roots wisdom of disability organizations like the Canadian Paraplegic
Association (Alberta). A leading authority is the Canadian Home Care Association (CHCA). Their mission is to speak with a national voice, promote excellence in home care through leadership, awareness and knowledge to shape strategic directions. Their vision for home care is an accessible, responsive home care and community supports which enable people to stay in their homes with safety, dignity and quality of life. On behalf of a membership of 200 home care organizations across Canada, the CHCA is guided by three key principles: 1. A national framework for home care that suppor ts accessible, quality ser vices that are publicly administrated and responsive to local community needs. 2. Home c a re is a cr it ic a l component of an integrated system through the prov ision of col laborat ive a nd interdisciplinary care. 3. Family caregivers and volunteers are vital and respected members of the home care team and should be provided with necessary supports. Home care has long been described as an essential element of an integrated, client-centered hea lt h ca re system. In Canada, the home care sector has experienced enormous growth over the past 40 years. The CHCA reports that one million Canadians receive publicly funded home care services annually which reflect a doubling of individuals served over the past 15 years. They estimate that another 500,000 individuals are accessing home care services not funded by government. The CHCA predicts that strategies to protect health and wellness will need to change significantly over the next decade related to our aging population and the need for delivery of care to reflect where individuals have the greatest recurring interaction with the healthcare system - in their communities through visits to their family doctor and management of their health condition in their homes and communities. However, Alberta is particularly posed to experience great stress on the system related to some unique
features of our province related to the economy, the provincial deficit, the geographic spread between our vibrant cities, changing rural demographics and changing weather patterns leading to fires and floods in recent years. My observation of home care services in Alberta over 30 years is that services have evolved respecting principles described by the CHCA. Alberta was the first province in Canada to implement the self-managed and family managed care options for home care services more than 20 years ago. A case management approach was adopted by home care managers (also recognized as a best practice through research conducted in other provinces) whereby needs were identified through collaboration between the individual/family and the home care manager. This option has been recognized as a best practice and adopted in other provinces. However recent drastic changes have been made; AHS has moved from contracting with approximately 200 home care companies across the province to approximately 40 large companies. AHS has reported that this strategy will reduce home care costs because of the reduction in bureaucratic process to manage contracts and will not impact service level or quality. That is not the experience however of many of our members who are frustrated with the absence of consultation, the disruption to their lives resulting from the change process, and a building fear for their safety and ability to remain in their homes and community. Individuals who rely on home care have reported concerns to us in relation to the following areas: 1. Their annual home care plans/contracts are being reviewed with the intention to reduce the scope of service previously available to them (fewer hours of care = reduced expenditures). 2. Persons who have been living independently utilizing the self-care option are also having their funding decreased based on an AHS directive and not an assessment of need. 3. Access to the self-managed care option has been frozen for individuals who desire the flexibility and control over their care priorities and scheduling of care. This effectively inhibits those individuals from pursuing goals related to participation in education and meaningful employment because the scheduling for direct service is contingent on the convenience of the home care agency and not the needs of the client. 4. The elimination of 75% of formerly contracted agencies has resulted in a change of staff for the majority of recipients/clients of home care services. Any change to home care staff requires a lot of effort on the part of the recipient of the service, related to building new relationships and communicating effectively with the new staff member. In reality, each home care client provides some level of training to each new caregiver who enters their home. In some cases, new/changed staff may demonstrate less commitment for showing up on time, or at all. As a result, one may question what consequence is in place for these individuals tasked to ensure you are taken care of, possibly leaving the home care client vulnerable in terms of their health and safety, not to mention their ability to actively
participate in everyday life, including school or work. Continued reduction in the reliability of care is unacceptable. Many home care clients fear they will lose their ability to stay employed and/or be active in their communities due to drastic changes that were imposed without adequate consultation or consideration; changes that could impact long term users who rely on home care to stay healthy at home. CPA (Alberta) is hearing the above complaints loud and clear on a daily basis. An excellent example can be found in a piece titled “When Bureaucracy and Policy Leave Ethics Behind: Our Nineteen-Day Battle with Alberta Health Services to Save Our (Independent) Lives” recently published by the Canadian Disability Studies Association. So I have to wonder why Alberta Health Services (AHS) has implemented such a change when an evolved and successful system of home care worked well from the perspective of clients and front line home care staff. The previous delivery mechanisms evolved over many years of consultation, piloted trials and the identification of evidence based best practice which abided by the principles set forth by the CHCA. It would appear that decisions were made based on the criteria of budget reduction for the short term without consideration for the long term rebound impact on utilization of hospital based services. Alberta Home Care budgets are shrinking on a per capita basis despite the fastest growing population base in Canada. A Government of Alberta task force was struck in the early 2000’s to look at the workforce necessary to provide the full range of health services needed in our growing province. Several strategies were identified in a report entitled “Workforce 2010” to increase the desirability and stability of working in a caregiving profession. The elimination of 60% of the contracted agencies who provided home care and home support does not align with any of the strategies and has left many former caregivers without a job and several community based agencies across the province will close their doors. Those who seek reemployment with a remaining contracted agency will likely be paid less for their work, likely leaving them dissatisfied and seeking other work outside the caregiving sector as soon as possible. The delivery of home care is one component of the portfolio managed by AHS which is governed by policies set forth by the Ministry of Health (formerly Health and Wellness) which has the oversight to set policy and direction to lead, achieve and sustain a responsive, integrated and accountable health system. There appears to be a disconnect between policy direction at the Ministry level and implementation at the corporate level of AHS. Albertans deserve a home care service that is integral to enhancing the health and wellbeing of citizens, particularly those whose health is at greater risk of compromise. That is not the recent experience of many citizens! CPA (Alberta) will be pursuing the concerns brought forward by our members with the Minister of Health and other members of the Legislative Assembly. We will report back via Facebook, Twitter and our next issue of Spinal Columns.
HOME CARE FEEDBACK BLOG To share your experience go to www.homecarefeedback.wordpress.com Spinal Columns
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