Family Care Leader, Shirley Edwards Writes the Book on Family Care Planning

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Trish: Hey there listeners welcome to access talk with Trish a 30-minute weekly online radio segment dedicated to examining the good the bad and the reality of accessibility in our communities and I'm your host for the show Trish Robichaux disability awareness coach author facilitator and motivational speaker I am a woman with a disability but I'm definitely not a disabled woman the access talk with Trish radio show can be heard live on Wednesdays at 11:30 a.m. Eastern at access talk with or you can listen to past show recordings on-demand at anytime at the same address or on iTunes if I'll tell you well this ship was brought to you by changing cases an accessibility consulting firm that simplifies disability legislation for organizations that think they don't have the time or money for compliance visit changing and nurture a culture of inclusion where everyone matters on that note I'd like to introduce my guest for the show for this week Shirley Edwards an experienced caregiver daughter and mother has crossed countless boundaries and challenged the system with confidence and success her story is one of hope and belief, belief her loved ones and belief in herself professionally Shirley provides training in system navigation and care planning for caregivers and healthcare providers Shirley has an adult son with disabilities and hydrocephalus and is also responsible for her mother through the powers of attorney for property and personal care Shirley develop participating families a services information program in the disability field she took on her mother's care while she started a business as a coach to help people with health challenges. she created a life care plan using a team approach for her mother's care and then she created a workbook to guide others in creating care plans with and for their own loved ones. Shirley's a boater in Georgian Bay yay her boat is called balancing act she's also a dog lover yay-yay was a best dog on the planet okay we'll debate that a border collie swiss mountain cross named lucky she has a husband with a very memorable name Don Cherie he claims to be the original but he doesn't work in hockey welcome Shirley.

Shirley: Thank You Trish.

Trish: So let's start with you sharing with our listeners a bit about your caregiving background with your mom as well as your son Jason.

Shirley: Okay well I have an expression called blessing in disguise because I've been a caregiver for 32 years, so when I say 32 years that means my son is 32 years old and all along he's needed an awful lot of different coordination care some very serious health issues multiple different types of what they call disabilities and like nutritional micro disability and anyways it's been quite a journey for me as a mother and then when my mother started to need help I just knew what to do of course I also been in the theology as you mention my deduction temperatures that had helped many other families as well navigate the system and deal with the very complicated issues that many of us face and the complicated system that we're trying to work with. So having had all that background when my mom oh no I went oh yes I can help and I carried on many years doing that I helped her now for 17 years and so as you know with seniors they'll they tend to go sort of go downhill, they don't get better and the chronic issues continue to pile up and so during a real difficult time where it got a little bit over the top opportunity to have a flexibility in it we have to stop and you can't run your business there's no backup plan so I hid a loan to govern what I'm a good nodded leapin going to another new level of a large episode and we have to take quite some time off when my business and that's my way I need a planning I know I need a team. So I created a plan the team around my mom and we discussed all the very common courageous conversations the difficult conversations are " what if " and the worst case scenario as well as the best case so that we would be prepared and most people don't plan and we're just going to hit but with this plan as things again progressed and things actually got worse in 2014 and 15 and 16 for my mother although it was challenging we had to plan there was no God I have the conversation here and had it and we exactly what to do when and where and how and that's when I realized that I have something I can help others with and I wrote a guide go down but it's insane for aging parents.

Trish: What a blessing that is my goodness.

Shirley: Yeah it really, really helped you know very often families hit that crisis moment and the mom and dad they've got conserved without and you know they're aging and the destination is an awesome smack they end up one of the one that mobile hip or in hospital or some some sort of you know major episode health-wise and everybody's running around grabbing on what to do with mom and dad and I thought what mom and dad want as well. So I'm hoping that this guidebook can really help people look at what they plan for so that when that happened if and then I hope it doesn't happen too many but it does they're ready with a plan and they're eliminated family conflict it reduces costs it reduces stress and upset after all upset enough with parents get sick.

Trish: My goodness yes.

Shirley: Absolutely and regardless of all my background Trish I just want to say, listeners, every single episode hit me right between the eyes I'm just as human as the next guy but you know I just myself off pretty quick now and I know what you're not going to ask that helps a lot.

Trish: Sure sure that resiliency it's a good thing how much of it we build.

Shirley: While I was coming up to the Trish because I'll just say again to the listeners I know Trish and because I've worked in the field I've met some amazing people like Trish who mentored me and given me I see yes I have learnt a lot from the best of the best of them right and now I'm going to share it with others.

Trish: Fabulous, so I'm sure along your journey that you have had an astounding number of barriers that you've encountered so from that perspective can you share some of your experiences with accessibility in our communities during your journey of caregiving and advocacy.

Shirley: [INAUDIBLE07:09] accessibility and because accessibility is not always just physical so my tongue doesn't use a wheelchair although accessibility needs to be accommodated for other issues like visual repairment and so on right so accessibility issues yes I've had many a nightmare conversation trying to get school systems to accommodate anybody was in school because lonely visually I find the system likes to deal with somebody who just doesn't have to make that work but everything else is no thanks right so I find this is some very difficult of a soft stuff right to deal with and also, you know, the electors are labels and they like it you've got just this and most of us don't have just this. So you really have to actually be a strong advocate and educate people one and give them the benefit of the doubt they can passionate and you know we get what would hide into a vinegar right so you're trying to I would take the high road excuse me I haven't informed you Mona and I inform them rather than that you should already know this the other thing is my family I certainly over the years certainly learned that there's the Talking Heads and the people who listen I'm just going to be playing to that some people are just doing the jobs we can go home and cut their paycheck and they have no interest in what they're really doing and they're only telling you this is the policy and they sound like a parrot you want to get from the cracker but others really listened so one of the things our new utility years as I find my champions. If I'm getting nowhere and guiding my head against wall with mr. policy got a squawk squawk I find somebody else to talk to that might actually hear the human side because every single incident and need is need is unique and the system is built for saying you're all unique so that's why you need to find that person that your unique needs and can help you navigate and accommodate your your needs in a way that really works for you or your loved one right and sometimes it takes quite a bit and sometimes it takes some creativity so as I talked about the system like it's like the system if you had that project we all know that's not true. So sometimes you just can't get anywhere anyways it just doesn't exist if it doesn't exist it's time to step outside of the box and look through your friends in your community and what else you can do that outside of the box one of the best examples I have is the one who was a wonderful mentor to me her name was Judith Snow she's passed but she had a lot of information upon the internet and she created a circle of care around her that were not attendants although she had quadriplegia she was never disabled she'd been she was an artist and the people that came together for her circle artists and we weren't there to care for directly we were there to brainstorm on how to make things happen where the system didn't exist to help us so that's something else to that I would recommend is thinking outside of the box.

Trish: I love the fact that you encourage people to even though they might have spoken to one of these talking heads at first contact with an organization to not write off that organization but try and talk to somebody else who may have a different perspective.

Shirley: Okay, so thanks Trish that's a great thing to mention it's almost like Reverse. When we're working with the system and we kind I got up against a wall mustn't assume that they're all the same any more than we're all the same we're not so there's people out there that care and some people don't get any field and that's what you're looking for is that don't paint the system with one black brush it's frustrating that maybe sometimes.

Trish: I love how you characterize that that we shouldn't write off organizations for their accessibility or non accessibility based on our experience with one person from that organization I think probably what most people do Shirley unfortunately, but I love your resiliency and that's what comes to mind for me when I hear how you work and how you roll is that you know you don't stop you don't see a stop sign you only know wherever job signs they see a go home sign.

Shirley: Yeah I'm very lucky like I said I bought the mentors years ago somebody said when a door closes you open a window right for and you can't give up, how could I ever give up on my son so you just keep going and the other thing I want to emphasize is the other thing that this how I'm going to adjust it like it sound like manipulation but you get more with honey news news inter right so when you hold people off as being great before you need to make the request the kind of chagrined into they have university sometimes but others say if you get if you're really great with people billy step up sometimes and you've lost them before needed done a good deed in saying oh yes I know you can help me thank you so much and oh I really appreciate it you know accession when we get that person's win this week it really acknowledgement and then you've got somebody on side get him on side right.

Trish: So Shirley tell me which systems, okay, there's multiple systems that you approach and tackle barriers to which system presented the largest barriers and how did you get past them.

Shirley: Okay so that's kind of hard could it depending on the given years and I've done one for 32 years the schools open was a real challenge because I never wanted to acknowledge all the invisible disabilities that I might um dealing with the invisible stuff of people that people don't want to do this right and then the healthcare system has been slowly being being dismantled for the last 20 years right under our nose things being cut back on so and so forth so there are terrible stretch of resources and so you need to name it now you know if they're all they're all I'm hurting right and what we need to do is empower them and help them rather than complain because it's not going to make a difference if we complain right. So one of the things I can I can share with you is for example I've had a recent major after the issue ongoing this one we took the issue with my son's housing and I finally was go for fourth or fifth time hit the fan and so instead of looking at it like this now I've got my leverage to really will file a complaint I use it to contact the city and say I've got something that can help us I've now got INAUDIBLE14:05 that I can share with you that will not only help my son but others. I am here to make a difference and help and contribute not complaint it's a totally different context and all of a sudden now I ever say I and you INAUDIBLE14:22 that was not been addressed property for quite some time right.

Trish: That comment that approach completely disarms people something defensive hmm that's awesome.

Shirley: Yeah now in the background I came on a podium that I'm not the five pie in the sky for who can walk on water I real like a check sometimes of the system I have my rent but I don't dare mad at them it will get me nowhere. so I call INAUDIBLE14:58 get it off my chest and I pound the air and all sort of stuff and then I suck it up grow up and get the job right but every time you things happen I find it just as stretching and there's times when it's like I wanted to throw out too tiring sometimes because never-ending so to speak.

Trish: Mm-hmm but you know we're going to do Shirley, we have to go to a commercial break when we come back I want to talk a little bit more about family care leader and we'll be right back.

Trish: So we're back. So I understand that professionally you are a family care leader would you share what you do for your clients with our listeners.

Shirley: Okay, so what I'm doing is, it sounds like system domination will but another case management and even plan the stuff that is done out there by certain professionals are conveyed and privately. I'm not actually doing that for others I'm still doing that for my family all the time. But what I want to do is share what I've learned with others so they can do it through themselves and then I could be the family care leader which person let me just point to something he'll not well not not about just to health care and it's not about just that you know the community care. It's about everything. So many tests steps up in the family to support another person it's about their social life, it's about cleaning there yard, it's about going shopping, it's about going to the doctors. It's all of it and it's sort of like an orchestra and somebody has to be the orchestra conductor. One of the best things you can do as an orchestra condoctor not only have all the different pieces of the orchestra do their part but they also have to communicate together to integrate the masterpiece so that's a big job that nobody does except for that family care leader that steps up into that role. Okay, and I love helping them not only with the role but also with planning to the future so they're preparing out blinded by our episodic life.

Trish: In a scenario you prevent burnout.

Shirley: Well absolutely, absolutely because I hit burnout a couple times I had to keep going anyways. So I found solutions that I now want to share with others and the other piece of it is I just want to say because of the business of family care solution there's not too many families can pay me directly and I can't do this voluntarily because I havn't won the lottery yet, you know. So I then also target the frontline in the health care field and the providing field to train them not to do that at full family care leader role but the fact that there is this big role called system navigation and planning and when they're coming in on the ground floor into your homes and helping that's when families mention these things and the contrary people can then support them being able to take on such as a sanitary, unpredictable and complicated room.

Trish: I should say so exhausting as well in terms of accessibility along the road I'm guessing that accessibility for you most of the time is in as those soft skills areas and those can be the most difficult barriers to bring down.

Shirley: Absolutely, absolutely and I can give you a firmly more specific here's our specific example and if you can, accessing the system for support services. My son has hydrocephalus anthropology in cerebal quality we're happy to say a scary amount he does not need attendant care nor does he need wheelchair access so anything to do with physical disabilities is not on on the place being able to logistically plan this day how to take care of himself and hygiene, you can't cook so on and so forth. So where is the gap here was there's nothing for hip for people like I didn't someone in this country and so I then use the mantle of brain injury. Now here's a some of a good example of our silly system I say silly system because they have silly rules so they have the people are brain injured until they're older than six years old yet my son's original brain injury per se came at a hemorrhage at birth. So I was ineligible at first when he told me criteria and then I went hang on a sec, he has had many surgeries since. When I project once off for enriched experience for back to backs and I know that [Inaudible]03:52he is brain injured he gobrain injured when he was 12 and some surgeries too. So now you have to let us in and that's how I got him into housing and you know what right now there's a 15 year waiting list I've always done things way ahead of time so the way this would not stop us because I've always had to be a planner so I recommend planning, I recommend tweaking criteria.

Trish: 15-year waiting list for housing.

Shirley: Yeah

Trish: In Toronto?

Shirley: It's terrible and yeah as an item Serena it's a nightmare for a polychaete families of adults of disabilities the group home system and all of that got dismantled actively early nineties when they invented the Community Care Access and here's what this false promise that the funding would follow which the community which it did not and the criteria for health including in living, you know, in community is almost non-existence for for everybody now right and the Development Services which my son is not eligible for because he has normal intelligence although he has such difficult brain issues even that if he had been would be another ten years waiting list so you've got to be really proactive and think ahead really very good at communication skills and being able to empower people to help you and then you're also going to be creative. Not everybody has all these skills that's why I feel badly for some people when you try to navigate the system and deal with all this and that's why I want so much to get the training out there.

Trish: Wow the the barriers seem insurmountable at times. I'm sure, can you summarize from your experience a short list of barriers that others should watch out for.

Shirley: Okay, so first of all when I said the things once I'm not for my experience of eligibility meeting their criteria so that they can serve you because all of the services out there, I'm going to be very facetious as they're being calendar and some ivory tower somewhere that said maybe if they only have wonderful incentive to we can cut them off you know it's this criteria can be ridiculous. So you really got to check into the criteria well fell and then tweet whatever your experiences to meet their criteria rather than expecting them to not be that way right except look so right and then so that's access the other thing is once you're in there. Being properly accommodated being really listened to being individualized and so on. Again I take the hilum they allow me to inform you and also take the patience road like for example right now my son has some services but they continue to not fully understand his, how it occurs and how his brain injuries present and I keep explaining one particular issue over and over again and so I just do it patiently and you know hopefully as I say within time and it is working many people that I'm training will get it and then I'll probably leave a new people come in and start all over again however I'm constantly informing and training that for the accommodation part of that to you right.

Trish: So your advice, your advice to others would be to patience and keep pushing beginning with acceptance of the reality of the system.

Shirley: Yeah, absolutely.

Trish: Then working within it or finding ways to create within the box, so to speak.

Shirley: Exactly,in the box and outside of the box and Trish I just want to say one of my mantras now and my motto all the time is blessing in disguise. So when something happens, you know, I get a hit a barrier or whatever it is and it goes oh no I know that if I can work it through find a solution and something new will be, come out I'll learn something cool something better will come out of it anyways and it sounds funny that way to keep the faith and that's been my experience. Keep going forward and, you know, good things will come of it over time you just can't give up.

Trish: I love that your approach expects the best from others and you act accordingly and sometimes they do too.

Shirley: Mm-hmm, actually I've had lots of great experience, you know, like I said you can treat people well they kind of have to treat you well back in a circle just not week different to many people what we call the system are frustrated as well there are split works there on your case there were on their feet I try to support them and then they support me.

Trish: So tell me Shirley what do you think as a summary here in a wrap-up what do you think as a society we can keep in mind on a daily basis to minimize barriers to accessibility.

Shirley: Okay, well I want to finish with the point I have mini-jack but we need to keep reminding people we knew this back in the 80s and 90s and we stopped talking about the value of contribution of people with differences, you know, when you bring people to the table and have unique differences yet they're all in service of a certain purpose and prove something new to the table and opens up creativity big time and I say this generally but there's study after study after study that supports this and we need to remind people that we're not being accommodated like a favor to us. It's not a favor, confess you being in my life has not been a, I haven't been a favor to you for having sex even a huge contribution to me, meating people like you do to snow Wow Wow I mean really it's so much government became such a lovely friend as well so you know the contribution of people with differences we need to remind people there's a value there and I'm talking variable accessibility and disability but I'm talking about diversity in general too and we need to add to say kindly remind people that were not being given a favor that we're actually being empowered to bring their contribution to the table.

Trish: Wonderful, wonderful Shirley if any of our listeners want to know more about you or want to contact you but your services how can they do that.

Shirley: Well I have a website with my planning program on it and it is WWW Shirley Edwards. CA and my email is cheeky it's family to care leader at I claim the right.

Trish: Fabulous okay great thanks so much to relief for joining us today and thank you to our listeners so much for joining us for today's episode of access talk with Trish a 30-minute weekly radio segment dedicated to examining the good the bad and the reality of accessibility in our communities join us again next week on Wednesday at 11:00 30 a.m. we're here every week the show is brought to you by changing paces an accessibility consulting firm that simplifies disability legislation for organizations that think they don't have the time or money for compliance visit changing paces and nurture culture of inclusion where everyone matters, till next time take selfcare seriously and God bless

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Shirley Edwards, experienced caregiver, daughter and mother, has crossed countless barriers and challenged the system with confidence and success. Her story is one of hope and belief. A hope to make things right for her loved ones and a deep belief in herself.

Shirley Edwards, Family Care Leader, patient advocate, system navigation, care planning for caregivers

Professionally, Shirley provides training in system navigation and care planning for caregivers and health care providers.

Shirley has an adult son with disabilities and hydrocephalus and is also responsible for her mother through the powers of attorney for property and personal care.

Shirley has:

  • developed Participating Families, a services information program in the disability field,
  • took on her mother’s care while she started a business as a Coach to help people with health challenges,
  • created a life care plan using a team approach for her mother’s care, and
  • created a workbook to guide others in creating care plans with and for their own loved ones.

Shirley is a boater in Georgian Bay. Her boat is called Balancing Act. She is also a dog lover with the best dog on the planet – a border collie swiss mountain dog cross named Lucky. And she has a husband with a very memorable name – Don Cherry. He claims to be the original, but does not work in hockey. 🙂

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