The Voice - Spinal Cord Injury Alberta with Rob MacIsaac

Join VAD as we speak with Rob from Spinal Cord Injury about what they offer the community and how they collaborate with AHS for spinal cord resources.

Transcript

Teresa Makarewich, VAD Program & Services Manager

Welcome to the voice of Albertans with Disabilities podcast for February 2024. I'm Teresa Makarewich, your host and VAD’s program and services manager. Thank you for joining us today. Voice of Albertans with disabilities gratefully acknowledges that what we call Alberta is the traditional and ancestral territories and gathering place for the diverse indigenous peoples whose histories, languages and cultures continue to influence our vibrant communities. We make this acknowledgement as an act of reconciliation and gratitude to the many First Nations, Metis settlements, the six regions of the Metis  Nation of Alberta and Inuit who have lived in and cared for these lands for generations. 

VAD has been talking with local agencies to learn about the resources that are available to the disability community. And in today's podcast, I'll be talking to Rob MacIsaac from spinal cord injury. Albert. Their website says adjust, adapt, thrive. Their mission is to empower persons with spinal cord injuries and other physical disabilities to achieve independence and full community participation. I thank Rob for coming on the podcast to discuss the resources SCI Alberta provides. Together, we hold the power. Welcome, rob. Can you please take a moment and introduce yourself?

Rob MacIsaac, SCI Alberta

Thank you, Teresa, for having me join today and do this. My name is Rob Macisaac. I am Personally, I am an individual with a disability. I've lived with a spinal cord injury from a motor vehicle accident  Now almost 20 years since the age of 18. I am a high level quadriplegic, but besides that I have been involved with the organization for about 19 years now. I was initially  Introduced to the organization when it used to be called the Canadian Paraplegic Association way back in 2004 in Nova Scotia. So there's that piece  And then I'm when I moved to Alberta in 2014, I went to school for social work, became a registered social worker, and have been a client services coordinator with spinal cord injury Alberta, now officially since 2019, so I've been active since then.

Teresa Makarewich, VAD Program & Services Manager

Active and aging yourself.

Rob MacIsaac, SCI Alberta

Hey, now, hey now.

Teresa Makarewich, VAD Program & Services Manager

I have a few questions about SCI Alberta to gather information for our listeners. Can you tell us who spinal cord injury Alberta is as an organization?

Rob MacIsaac, SCI Alberta

As an organization, we are nonprofit, Of course, always working in the disability field, specifically with individuals with spinal cord injuries - nationally as well. So it is a national organization, there is a spinal cord injury  Canada, but we do have a division at least one  Four or more offices in each province. Mind you, the one in New Brunswick does go by a different, different name, which is a ability New Brunswick, but there is, still adopts all the same aspects. Besides that, we're as an organization, we work very closely with community as well as healthcare number to health services, primary care network those. Individuals with all forms of disabilities, of course. Like you said, similar to spinal cord injury, physical, physical disabilities, neurological conditions. so we work with anybody of all ages, and of course, those of youth always working with their parents of or guardians  Going through that Avenue of, you know, as you're supposed to working with the younger individuals below the age of 18, we have a couple social workers on staff in our five different office areas that we cover which go from Grand Prairie, St. Paul, Edmonton, Red Deer in Calgary. I myself I'm the only social worker  Here in the Edmonton office and then we have two social workers in our Calgary office. So we assist not just clients but also patients and hospital settings families, any of their support networks that or anybody that's involved with them within their within their circle of people.

Teresa Makarewich, VAD Program & Services Manager

You've been around for, you're saying 19 years or so. Can you give us some history about the organization?

Rob MacIsaac, SCI Alberta

I can give a little bit, just a little tidbit for it  so its, Been around since 1945. The organization was founded by John Counsel in 1945. He was a returning vet from the World War war one I believe for World War Two -World War Two. Yeah, not one I'm crazy. Started as a peer group because there wasn't  Any support for individuals during that time for with spinal cord injuries, so that in at that time there wasn't a very long lifespan for individuals that sustained an injury. So being able to create that provided opportunities and of course  Extending people's lives, get people back into community or being involved. What was established, kind of like with the with the peers helping peers mandate at that point, So having all the different branches finally spread out.  Alberta was founded in 1961 by Pierre Garriepy, who was also another surviving World War 2 pilot. I believe I'll have to double check, but it was close, close to that. I do several of these presentations, so sometimes I get my  Dates mixed up. But I know it's 1961 for Alberta. And at that time it was called the Canadian Paraplegic. In 2011, it, we were rebranded nationally as spinal cord injury to better reflect the population of individuals that we serve because as you know with spinal cord injury, there's several different classifications from quadriplegic, paraplegic, tetraplegia, hemiplegia so instead of just  Having that paraplegic associated with it that way, it it broadened it and more inclusive, so everybody knew that we worked with anybody with a spinal cord injury or neurological condition. But even to date, like we've expanded from the one  Office to five and we serve the entire province So do our best to serve the entire province.  One of the highlights, too  Is that in Calgary, we opened a  A gym that it's a fully inclusive and accessible gym where we have two kinesiologists specialize in neuro. The name is called the Neuro Recovery Center. The NRC for sure. So we people get access to the Kinesiologist,  specialized fitness programs and we even have FES cycles. So functional electronic stimulation cycles for doing different things around that. So that's a little bit. Of history around the organization. And like that have been involved. So I've seen several different changes over the years and some different organiz,  branches in other provinces that have specifically peer focused. We're one of the ones that have a diverse Say skill set of employees with social workers,Individual psychology backgrounds, all those parts to encompass into the client services side of things.

Teresa Makarewich, VAD Program & Services Manager

How would you say spinal cord injury Alberta helps people in the community?

Rob MacIsaac, SCI Alberta

How is it being a social worker and living with a disability myself with helping individuals and community like we start a lot of times,  It's like if we can play an instrumental role. And they're those individuals lives starting from the time of acquiring a disability or diagnosis. I  need people who have sustained an injury or the diagnosis rate from sometimes it's the first week, right. I've met people in ICU to acute care, Rehabilitation and back to community, so the whole role I have like my position plays as client services coordinator is to assist or help that individual navigate their way  Transitioning back to the community. Right or course it's same community, but from a different perspective. Helping them navigate different aspects of financial navigation, adjusting alone to emotional adjustment, physical adjustment, looking for equipment, housing it encompasses a lot. I usually call myself Jack of all trades, master of none but  I know some people may argue that you know no and just having a lot of things in my back pocket in toolkit, I would say to help people navigate. Efficiently and effectively back to community is huge and and  To see them thrive back in community, right, just helping them With there's some so many different things, and I think of even starting at the hospital stage right, helping them understand the medical model. What what each each setting is like and what they're maybe going to be doing in each setting, right and in anticipation before hitting the rehabilitation center To start progressing, learning, learning the techniques that they Will require to thrive, right and to live independently, or be able to be independent but direct their own care.

Sometimes that education goes towards the families as well. Family members or support networks. As I indicated we we don't only work with the clients or patients specifically, but also with that encompasses their entire  Circle if need be. Family spouses, children. We have resources for kids. We even have a we have a couple different books that we provide that were developed for us, 1 is life after spinal cord injury, which is really educational. But we also have a youth version of that that is  Easily written from a perspective that it's much Easier for youth to understand, so I'll I'll oftentimes provide that to families if they have young, young kids, right. So that way they can kind of help understand why mom or Dad or brother or whatever is going through what they're doing. So it encompasses quite a bit of different things. I guess there is  I've seen it all. Good things, bad things, amazing things. We also do get donations of equipment through over time that we redistribute back to the Community so they give people are unable to afford certain things and we just have it happen to Have it we're able to provide that to them and it's the same for discharge. From hospital too  Right now my work. Really a a lot in HS as well in the healthcare system as I indicated before, we're working with the clinicians as well. I I spend a lot of time in hospital settings. So if it's helping clinicians understand from a lived experience perspective, it's doing that, being able to provide different resources To different clinicians or new clinicians coming in, being able to help educate them on spinal cord injury, it was definitely a been number of projects that our organization that has worked in over the years. To sum it  up  We do a lot of different things that help a lot of different people So and mostly navigation navigating systems.

Teresa Makarewich, VAD Program & Services Manager

Sounds like some great resources. So as you were saying projects, what are some of the projects that the spinal cord injury Alberta has done in the community?

Rob MacIsaac, SCI Alberta

Much bigger piece, it's we've  Have contributed to changes within AHS policy and procedures when working with individuals with spinal cord injuries. So like I said, it's not just traumatic or non traumatic, but there's also intersectionality between other diagnosis as well and other disabilities. Projects have been developing toolkits and pathways for clinicians to support individuals with mental health. We've Co developed and Co designed all the resources on being able for clinicians to be able to help patients with bowel management, Bladder management, navigating what's called autonomic dysreflexia. So which is in individual spinal cord injuries from the level of T7 to  level 7 and up are susceptible to and it's something that a lot of  Regulars say clinicians or nursing staff aren't aware of, but it is a major priority for individuals if they go in because they can elevate to the point of causing a stroke. So we've we've developed a lot of educational materials and it is now An actual practice or Procedure within AHS that these clinicians have to follow that if you present at emergency or wherever that those cards that we developed with AHS that you know of course have our logo and AHS and everything on it like you and everything is Co developed and. Co designed and Co presented. If it's an education session, so we do number of education sessions. As well, with different we've we've done it in long term care facilities, hospital facilities and with this we have a clinician that's knowledgeable in the field or in the area. But then we partnered that clinician with a peer of lived experience to be able to provide their perspective as well. So these are these are some of those are I'm I'm trying to remember the exact name of it. The essential the spinal cord injury essential Learning series I think is one of them that's within AHS now. So that's done at the Foothills Medical Center in Calgary. That's done here at the Glen Rose Rehabilitation Center as well. And then too,  done number consulting on accessibility projects, whether that's. Housing developments, you name it Businesses those pieces. We've been working with the Praxis Institute out of Vancouver now for many years on a It's an absolute ongoing project per se, but it's a national project that's across Canada and it's called the Rick Hansen Spinal Cord Injury Registry and the point of that is to gather data over a certain set of data point times. So it's done in one, one year increment, Two year increment, then five year, 10 year and 15 year. So for participants to do like follow up surveys To kind of  Grasp where they're at in their journey and get that feedback, which is then put into a global research platform that is used that we can pull statistics and data from, from all across the province or not just the province, but all across Canada. And the whole goal is to improve For improvements for individuals with like, not just with spinal cord injuries, but there's so much intersectionality between disabilities that anybody with mobility issues or vision or anything that it it does, it is able to impact that positively, hopefully even more so as we go forward. Right, with new government stuff that they're attempting to do. So yeah, that's just a little a snippet of some of that, quite a bit of it can be found with AHS it's on  Neurosciences, rehabilitation and vision strategic Clinical Network website. So that's that's who we do all the work with that that reaches out to us and and we've done several different collaborations and partnerships with the Health Quality Council level Alberta as well so.

Teresa Makarewich, VAD Program & Services Manager

You kind of touched on this already, but what are your thoughts on how spinal cord injury Alberta contributes to disability community to better people's lives?

Rob MacIsaac, SCI Alberta

All education doing the education piece, working with the different other different organizations such as yours, the Voices of Albertans with Disabilities, right. How We can sometimes collaborate or partner or help bounce back like or like work between the two organizations to help the clients that we serve, right. like I know we have overlap with clients even just with navigation because a lot of people get overwhelmed with different systems, so  Taking some of that burden away and helping them focus or focus with their , where they can put that better energy and take some of that burden away and helping them navigate and improvements in healthcare. And receiving health care. Right, like and helping them become Or even just providing resources to Empower individuals is #1. But also be self advocates too, empower them to know that they hold the power to advocate right, like and that's sometimes hard as we know as an individual with a disability is that we often feel Less than or less empowered because we live with a disability, when in reality we all have a voice, right and we and even then, when we're together, we have bigger voices. So you know, just contributing to these, these different aspects and what we're reaching out to by government organizations or policy  Makers to be able to provide that direct input from individuals with lived experience, which is one thing I have to say is  Now that More people are listening, listening it up. No, obviously. But that's like we're human and we have to start somewhere as if it's starting to encompass the voices and the perspectives of individuals to make changes, if that makes sense.

Teresa Makarewich, VAD Program & Services Manager

That was awesome. Great. How does someone get a hold of spinal cord injury, Alberta?

Rob MacIsaac, SCI Alberta

Well, who can anybody can contact us and we do have we have our website which is sciab.ca that you can go to our employees there that we do have each individuals contact that you can link to that it'll bring up pop up box to send an e-mail to or whatever. but we do have two full 2 toll free numbers that you can call for the North zone South zone and you don't have to be an individual with a disability to phone us or e-mail us. It's even if you have questions. We've received questions from  Anybody and everybody, even from the states, you know, we've had people contact us from the, from the states or from Europe that are coming for a visit to help, you know, try to figure out and help them plan trips. So there's that way. We're have a social media presence on Facebook. We have one on Instagram. All they do is search  Spinal Cord Injury Alberta will pop up on there. Am Kendra, who  does an amazing job at our social media, That's the shout  out for her. She is  With it. So yeah, that those are the simplest ways to reach out. We have somebody that's always checking or answering either line in the cell zone or zone in emails and yeah, that's those are the quickest, simplest ways or word of mouth, even if it's contacting you yourself, Teresa. Since you know we're almost the office  Office sharing buddies.

Teresa Makarewich, VAD Program & Services Manager

What is an interesting fact about ASCII Alberta that everyone should know?

Rob MacIsaac, SCI Alberta

Now we have social workers on staff. Registered social workers, registered licensed practicing social work as a lot of people don't know that.

Teresa Makarewich, VAD Program & Services Manager

That's a very good resource, yes.

Rob MacIsaac, SCI Alberta

I'm sure there's definitely more, but. But yeah, no, that was that's the number one thing that that stands out. So and we're very well connected in many different areas of the community, so.

Teresa Makarewich, VAD Program & Services Manager

Perfect. Well, thanks for your time and energy today, Rob. Your support of the Community is a value to all. Is there anything else you want to say today that I haven't asked you?

Rob MacIsaac, SCI Alberta

No, but I I really appreciate you reaching out to us and you know wanting to. Give more information to put out there to the individuals that you serve as well, so that way it you know everybody, everybody.

Teresa Makarewich, VAD Program & Services Manager

Yeah, the more information we have, the more information we can Get out there. Awesome. OK. Well, thank you again for joining VADs Podcast today. Voice of Albertans with disabilities is across disability nonprofit organization  of and for people with disabilities. VAD is guided by the principles of accessibility, equity and inclusion. Learn about VAD services on our website at www.vadsociety.ca or call 780-488-9088 For more information. If you have a topic you would like to hear more about in a podcast, please e-mail Teresa at vad@vadsociety.ca with topic ideas, speaker suggestions, or your feedback. Signing off for the day together, we hold the power.