Navigating Systems
If you have a special needs child, a family member with extra needs, or an elderly parent needing care, you might be overwhelmed with information, processes, and where to go first. Navigating Systems looks at the big hurdles that military families face, how to plan and self-advocate and how to tackle this daunting challenge.
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Special Guest
Colleen Cahoon is currently the Manager, Regional Services Vancouver Island for the Alzheimer Society of British Columbia. Before that, she spent over 10 years helping families with complex and special needs navigate systems as the Family Navigator Coordinator at the Esquimalt Military Family Resource Centre.
Highlights
- 3:08 The biggest hurdles for families to overcome is what direction to go, what questions to ask, who to go for what, when.
- Systems are complicated and hard to understand
- Not having a family doctor is a huge barrier to accessing services
- 11:15 Really sit down and develop a plan
- Ask questions. Ask everyone.
- 12:51 Self-advocacy
- With each transition there is a new system to navigate
- 16:39 Gather as much information about the services that exist and the systems.
- Saying to a service provider, I want to work with you to get this achieved.
- 20:00 It can be a great learning opportunity
- If you’ve done it once, you can do it again.
Quotes
“If you’ve done it once, you’ve got this, you can do it again. Is it hard? Absolutely. And it’s a lot to take in. And I think it’s just the planning piece is really important. There’s also a lot of other people going through this. If you get connected with the right people, it’s really important, and it can really help you from feeling isolated.” – Colleen Cahoon
“Ask questions. Ask everyone. I remember for myself, for example, and I had a family member and I was navigating systems. One of our best advocates was an occupational therapist and speech pathologist who had absolutely nothing to do with me accessing services, but they knew how those services worked. Other parents know how those services work, ask questions, reach out to people, you’ll often find people who are in a similar situation who can give you tips and then you figure out the best plan of action for your family.” – Colleen Cahoon
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Links
Thank you
- This podcast is made possible by funding from True Patriot Love Foundation.
- Thank you to Organized Sound Productions for their help bringing this podcast to life.
Transcript by Otter.ai
Intro
This podcast is made possible by funding from True Patriot Love Foundation.
Colleen
If you’ve done it once, you’ve got this, you can do it again. Is it hard? Absolutely. And it’s a lot to take in. And I think it’s just the planning piece is really important. There’s also a lot of other people going through this. If you get connected with the right people, it’s really important, and it can really help you from feeling isolated.
Intro
The military lifestyle is all encompassing. It’s difficult but rewarding. Dynamic, very, very dynamic. Unpredictable. You are in the Canadian Armed Forces, or a family member connected to the military. You know, the lifestyle can be a challenge. Military lifestyle is always changing. In this podcast, we explore the world of deployments, postings, and transitions. This is the military lifestyle. Here’s your host, Jon Chabun.
Jon
If you have a special needs child, a family member with extra needs, or an elderly parent needing care, you might be overwhelmed with information, processes, where to go first, add in dealing with a relocation or deployment into the mix. It can get complex, it can get challenging. So for many years, Colleen Cahoon help families with diverse and special needs navigate the complexity, things like the medical system and the school system.
A couple years ago, I was doing this video project and interviewing families on a variety of subjects. And I spoke to this one family about navigating systems. It was amazing because I thought I was going to be interviewing a family to promote the Military Family Resource Centre. And it turns out, I was actually creating a video on Colleen Calhoun and it felt like it was a video designed to I don’t know, I don’t know if your current employer watched that video because this family gave a ringing endorsement to the work that you did at the MFRC when you did work here and they were so passionate about? No, it’s not the MFRC, it’s Colleen. And so welcome, Colleen. And thank you. So you’re now the I had to write this down Manager Regional Services Vancouver Island for the Alzheimer Society of British Columbia. Yeah. So congratulations on that.
Colleen
Thank you.
Jon
If you were to paint a picture, based on your experiences, describe some scenarios, situations, and I’m thinking in general terms that military families face when it comes to navigating systems?
Colleen
Well, I think for military families, they move so often that they’re trying to navigate different systems on a regular basis, that are very different. So if you move from Alberta to BC, for example, the systems that exist in BC and the reality of the services meaning how you access the services, how long you wait, what you need for those services are different, so different than when you come to a province such as BC and I think that is one of the biggest hurdles that is identified by Military Family Services is trying to help level the playing field for families when they’re moving from one place to another. And it doesn’t need to be a family member with a special need, it can be a family who just has some health stuff that they need to figure out. And what you get in Ontario is different than what you get in Alberta, which is different than what you get and BC. So I think that’s one of the biggest hurdles for our families to overcome is trying to know what direction to go, what questions to ask, who to go for what, when?
Jon
And can you give a few examples of some scenarios that they went through? Or? what I’m thinking of is, I know that you’ve dealt with families with special needs children? And is it does it really come down to a relocation from province to province? Or what other things have people found?
Colleen
Yeah, so relocation is one of those issues and from province to province with navigating systems. It’s not just relocation, though, it could be completely not military lifestyle specific, or it can be tied into military lifestyle. So it could be a child has a diagnosis, a parent has a diagnosis. And our systems are complicated. And they’re hard to understand. So for families to know what that plan of action is, when they’re first starting to navigate those systems. And to know how to cross systems often, you’re dealing with, for example, maybe someone who does have a diagnosis of autism, but also has a mental health diagnosis, right. And so you’re dealing with two different systems. One would be a child and youth special needs, the other would be challenging with mental health. And you have to cross those systems in order to get the full range of support that that child would need. And so knowing where to go, who to go, knowing the questions to ask, and also how to advocate it can be very frustrating and overwhelming. So you know, knowing the best strategies to advocate for services. And and it’s a fine balance between coming in and demanding versus sitting back and thinking welcome, professionals got it, they have it. As a person needing services, you have to be out there, put yourself out there, ask the questions, track the answers to the questions, and really try to balance understanding, yes, this they may not get these services right away. What can I do while I’m waiting is one of the best strategies for advocating is what can I do while I’m waiting? And I think, you know, our families experience lots of different things when they’re navigating systems. And if you add a deployment onto there, it really amps it up, because it’s one parent doing it alone.
Jon
What are some of the challenges the family’s face, when it comes to navigating systems?
Colleen
What they all face as long waitlists, they’ll face long waitlists, but they’ll also face minimal support. So minimal services, sometimes often there’s not a good comprehensive service that’s going to address all of the needs for that family. They’ll face difficulty accessing services. So as we know, we’ve got a walk-in clinic system here that appears in Victoria, for example, to be shrinking, we’re seeing more and more walking clinics close, harder and harder to access a walk in clinic, you need to see a doctor to get access to the services. But if you don’t have a doctor, it’s a huge barrier to accessing services.
Jon
And having a doctor I mean, Doctor shortage. Massive.
Colleen
Yeah.
Jon
Doctor shortage, I don’t understand why there’s a doctor shortage. You’d think people would want to be doctors and you think people would want to be doctors in our area. And yet, we’re running into a doctor shortage for military families. Especially if you if you’re moving from province to province of like continuity of care.
Like geez, gaps in care. I wonder if there’s any missed diagnoses? Yeah, differences from province to province getting used to a system, wow, and military families they have they have to deal with the provincial health care system. The Canadian Armed Forces member, they get taken care of through the DND system.
And I’ve no idea if you if you go through like four moves in seven years, which I’ve heard of what what does a military family do there?
Colleen
Yeah, well, and it’s difficult, right. And you’re dealing with two different systems, you’re dealing with assumptions from public service providers that military families are taken care of by the military by military doctors, which is not the case. I mean, I can’t remember, even count how many times that I had a service provider say to me, Oh, no, I thought the base have psychiatrists, psychologist, pediatricians that the family can access. You know, those are huge barriers for military families. And so yeah, I think it leaves lots of challenges and shows trying to find your way through that. And, and it’s possible and lots of people have done it, and really comes down to learning how to advocate and a good plan. So I think trying to to get that set out for military families is really important.
Jon
Do you find that most of the impacts are through because of relocations?
Colleen
No, I would say relocation would be some of what I would deal with. Those are the ones that have, the impact can be more significant sometimes, right? The impact for someone who had lived here and been in one location who wasn’t relocating, may not be as significant as someone moving because they’re not starting all over. On the flip side, if you’ve navigated a system before, you do have some tools in your toolbox to navigate it. But often it would be families that I would see were families that maybe military lifestyle, touched a little bit on what they were dealing with, but they had been here for years, they weren’t experiencing a deployment, they just didn’t know where to go, where to turn, because the services were so limited. And there are certain benefits as a military family that you can access often, you know, making a creative plan to access those benefits. Do that while you’re waiting for services type of thing would work. Also deployments often, and deployment will really impact a family, if they have a child with or a family member with health concerns that they don’t have the support in place, if you don’t have the support in place during the deployment, it’s very hard for the caregiver to stay healthy and do the self care that they need to do to get through it.
Jon
What are some of the other impacts you’ve seen on families?
Colleen
Often I would see families give up. And then the person who needs the support when get the support that they need. They’re just so frustrated. It does affect the family as a whole when when one family member is really struggling, it’s hard for the family to function together, it can create a lot of stress within the family. Especially if you’re dealing with a deployment, I often see the caregivers during the break burnout and really struggling. So there are lots of effects if you don’t know how to navigate a system on a family that could potentially be.
Jon
So what do you recommend to families with diverse and special needs?
Colleen
Really sit down and develop a plan, especially if they’re going through a move? Or they’re trying to navigate a new system to develop a plan of what’s your first step? What is the first step just breaking down into achievable chunks? If we think of when we’re doing business planning, we think of smart goals. And we talk about realistic, achievable. That’s really what you want to break the plan down is to realistic steps that are achievable, that have a goal. And think about what the short term. So here’s the short term, here’s what I’m going to do. While I’m waiting to access maybe these longer term services, and really thinking in those two ways that you have the short term, it might be a filler, it might be a gap filler, you might be paying privately for some things. What are some of the benefits out there that you can access if you’re paying privately? And then what trying to figure out what those long term supports would be and ask questions. Ask everyone. I remember for myself, for example, and I had a family member and I was navigating systems. One of our best advocates was an occupational therapist and speech pathologist who had absolutely nothing to do with me accessing services, but they knew how those services worked. Other parents know how those services work, ask questions, reach out to people, you’ll often find people who are in a similar situation who can give you tips and then you figure out the best plan of action for your family.
Jon
What are some things people can do to help self advocate for themselves? Like how can people advocate for themselves and for their family?
Colleen
Yeah, so I think it’s important to focus on what you’re trying to achieve. So for example, if your child is not able to be accommodated with an education setting, because their behavior is they struggle to regulate their behavior and an education class, like in a classroom. What are you hoping to achieve? At the end of the day? Are you hoping to achieve that the school no matter? What has that child in that classroom? Are you hoping to achieve that your child has access to quality education? And so you need to focus on that what you’re hoping to achieve, because what the way you think while you’re advocating for services that you might get that in place might actually not be how it happens and how it happens might actually be much better. It’s really important to focus on what do I want at the end of the day, what am I looking for? And then I always one thing I always say to people is work with the service providers? Yes, you may need to stand strong on a point to me to say I really want the best for my child, I want their needs to be met my parent, whoever it is, and I need these things to happen. And how can we work together to make that happen? And that’s really important is asking that service provider? How can we work together to get this person’s needs met?
Jon
So it’s interesting when I when I first looked at this issue, a lot of the research focuses on postings, relocations. But I guess, when you get that first diagnosis, you’re not dealing with a relocation or posting, you’re just dealing with the news, right? This is the new reality. And for a military family to experience that challenge, obviously, the lifestyles a challenge, but then you have this added responsibility. I don’t know that’s not really a question or anything. Yeah. What’s your take on that?
Colleen
Well, I think, yeah, it can be military related. And it can not be military related. And it’s every transition. And I’ll I’ll use some I’ve had to navigate lots of systems for family members over the years, right, and it doesn’t stop, it doesn’t stop, you know, once you have a diagnosis, you navigate the systems and you’ve got your services in place, you’re done each transition. And the transition may be a move, but it could be a child going from middle school to high school, it could be a child going from high school to university or one university to another. It could be that you’re caring from your parent, and they’re moving from assisted living into long term care. Those are all transitions, and you’re having to navigate new systems each time. So this isn’t a military family issue. Military lifestyle makes those challenges a little more prevalent, or a little more, you can observe them a little more. But it’s not just a military lifestyle issue. We all have to navigate systems at one point or another in our lives.
Jon
So give me some tips. And that’s something I could walk away with here. Well, what would you recommend? If I were to experience this? Or if a military family member were to experience something like this?
Colleen
Yes. So one thing I would say first off, is, which I mentioned before is asked questions. Ask everyone, you know, where did you get access resources? Who helped you? Where should I go? Ask a teacher if it’s a parent in a home, ask a care aide, ask anyone asks people dealing with the situation, reach out and ask questions about where do I go for this? And how do I get help reach out to the different agencies in town that may help if you have someone diagnosed with MS, reach out to the MS Society, ask the questions about where you go for help. So I think it’s really important to gather as much information you can as possible about the services that exist and the systems. Once you gather that information, then it’s time to take a look at your benefits. See if there are any private services that you can access to fill in some gaps that there may be and develop a plan. And like I said, make that plan really achievable. The other piece is, most likely, you’re going to have to advocate for services with service providers. And they want what you want, they want the family member, your loved one to get the support they need. And they’re stuck often in systems that are that have a lot of clients, they’re overrun, they’re trying to get services in place. So it’s hard for them to get those things in place. So figure out your best way of advocating. For me, my best way of advocating was always saying to the service provider, I want to work with you to get this achieved. This is what I want. And I’m not going to change that I want, say my father to get the care that he needs. I want my father to get the care that he needs. I want to work with you. How can we work together? And often when I was advocating I bring things to service provider said I heard about this, could this help us? Really constant contact? The other thing that I think is really important when you’re navigating services is that you track it, I used to map out services. And I had a binder that had everything in it. And I would map out so I’ve gone here. No, that doesn’t work. Maybe try over here. Yes, that works. What worked with me what was the pathway? And what are some tricks that I’m learning along the way. So map it out. And you have then you have your plan. And I’m going to take step one, and again, reach out for help reach out to the different societies, the different agencies, it’s really important. There are lots of people out there who know these systems, but they don’t systems that aren’t inherit, to understand. And there’s not always a lot of information about how to access services. So reach out.
Jon
Do healthcare providers understand the impact that military service can have on families?
Colleen
That’s a big question. I would say some health care providers do. I don’t think that the the norm though, I think often health care providers have a lot of things they have to understand and understanding the impact of military lifestyle isn’t always first and foremost on their list of things to try to understand. They’re healthcare providers because they want to help people, right. So they, they try their very best to support and do what they can. But I don’t think, of course, they understand the full impact. And like I mentioned before, you know, I would often get questions, doctors thinking that there were psychologists, psychiatrists at the base, pediatricians, gerontologists that families were accessing services at the base. For military families they have one of their first jobs is to explain, this is how I access services, I benefits just like you. And I don’t have anything extra above and beyond that.
Jon
So when it comes to diverse in special needs, and the Canadian Armed Forces, would you say that it’s lonely?
Colleen
It can be here, you can be alone, trying to figure it out. If you can’t get connected with the right people. It’s a great learning opportunity. I mean, this learning opportunity as a military family member, this learning opportunity I had going through this with a family member shaped my career, I met some really great people along the way, I learned some really great things. It’s also an opportunity for growth. So it can be lonely, and there are going to be times that you’re all alone standing there saying help me help me. There’s also a lot of other people going through this situation. And so if you get connected with the right people, it’s really important, and it can really help you from feeling isolated.
Jon
And I was thinking mainly of relocations, when I first thought of this, I thought wow, you know, you think about accessing family doctors, trying to access specialists, you know, transferring records from province wants to province, doctor to doctor, you know, there’s there be gaps and care for special needs kids, delays in interventions or diagnosis. There can be losses, gains of services, depending on where you get posted, language barriers, being unaware of services available. Geez, I’m sure it can be stressful and frustrating to relocate. There’s career implications on the parents, and yet missing out on the routine parts of seeing your family physician things like vaccinations examinations are huge, you know, each posting could be a new system. But I think when you’re just dealing with the issue, wow. That’s that must be overwhelming for people.
Colleen
Yeah, I think it can be.
Jon
And then and then it could potentially be even overwhelming when you have to make the move again.
Colleen
Yeah. Well, it’s you’re starting all over each time, right? It’s also what I would talk with families about, it’s how you frame it for your self too. So it is overwhelming. It can there’s lots going on. And yeah, we don’t always like to grow through these things. But we do. And it’s, this is also an opportunity for growth, military families are strong. And they can get through tons of transitions. And so knowing that with yourself is that I’m strong, I’ve got this, it might be scary, I might not know where to go, there might be so much going on, I feel overwhelmed. It’s it’s really important to just go back to I’m strong, and I can do this. And then break it down. Just lay out your plan, chunk by chunk. Go through it, you know, what is your first priority? And I would say first priority, we often would be family doctor, right? Check out your benefits, what can you benefits help, while you’re waiting for services? What are the services like in the province start to call before you move if you’re moving, those things are really important to help families. And in one of the most impactful full things of this job to me was that I. And I remember one incident in particular, I had a family come to me after and they said, I’m just so grateful because through this experience and because I reached out, I learned how to navigate systems. So next time I do it, it’s not going to be the same, it’s going to be really different. But I at least know where to start and how to start asking the questions and how to advocate for my child. And I think that’s so, you know, such a true statement is how if you’ve done it once you’ve got this, you can do it again. Is it hard? Absolutely. And it’s a lot to take in. And I think it’s just the planning piece is really important. You know, often we look at navigating systems as really difficult. And it is and I think it’s acknowledging that it’s difficult, right and acknowledging for families because I think our families will be feel that people don’t quite get it. So acknowledging that it’s difficult and then finding your way through it is just so important.
Jon
Well, thank you very much for coming.
Colleen
Okay. Thank you.
Jon
So your local Military Family Resource Center might be able to assist navigating the systems. Visit CAFConnection.ca to find your closest MFRC location.
Extro
Thank you for listening to this episode of The Military Lifestyle. To learn more about this episode, and to check out our other resources like the deployment app, go to EsquimaltMFRC.com A special thanks to True Patriot Love Foundation for funding season one of this podcast and to Organized Sound Productions for bringing our idea to life. Please share this podcast with your military family, or with someone living the lifestyle. Subscribe to the military lifestyle on your favorite podcast app. Your support is greatly appreciated. Thank you for listening.
