Transcript: ISBA 2016: The shifting sector - Amy MacFarlane

Amy MacFarlane, Founder and Chief Executive at Recreational Respite talks about innovative partnerships and use of technology in respite provision in Canada.

Podcast Episode: ISBA 2016: The shifting sector - Amy MacFarlane

Category: Carers 

What follows is a transcription of the audio recording. Due to differences between spoken and written English, the transcript may contain quirks of grammar and syntax.

DM - Donald Macleod
AM - Amy McFarlane

DM My pleasure it is now to introduce Amy MacFarlane, who is the Chief Executive and founder of Recreation Respite Canada. As a provider of creative and flexible respite services, Amy will tell us about the latest developments in policy and practice in Canada and how this is changing people’s expectations of where, when and how respite services are delivered. Amy will share her views on the need for traditional services to become more entrepreneurial and collaborative in their approach to service development and what this means in terms of new business skills and tools. So, let us welcome Amy McFarlane to the stage.

AM I’m Amy McFarlane, as Don introduced. I’m going to talk to you a little bit about the shifting sector. I’m going to give you some really cool things that are happening right now in Canada in respite. Some innovative partnerships, things that are happening so that there are not for profits and for profits that are collaborating, getting together to break down some silos, maximising support, minimising the dollars necessary and I’m going to give you some really cool things that my company is doing in Canada in the technology world to make things more accessible. Not just financially but emotionally, physically and mentally accessible. And I’ll talk a little bit more about what means when we get through. So, a little bit more about me. I’m from Toronto, Canada - I was born and raised. I now live about two hours north of Toronto, Canada in country land they would call it. Just recently moved to a new area actually, those are my two littles and this is me in Kuwait. This is my 5th country keynote speaking engagement and I’ve been speaking around the world to different audiences about different ways that we can maximise support and work together and really break down a lot of barriers.

So, first I have a little clip that I’d like to share. It explains a little more about Recreational Respite, which is my company that I founded in 2008. It is all about recreational therapy. And if you’re not familiar, the terms are a little bit different in different countries. They’re also known as diversion therapy, engagement specialists and what it boils down to is the skill and how we engage an individual who’s affected by impairment or challenge. And what that means is it’s not just adults, it’s children, youth, adults, older adults. Could be a child who has autism, it could be an individual who suffers from post-traumatic stress disorder, who’s isolated. And it could be someone who has Alzheimer’s disease. So, we really work with a huge scope of people and need in my company specifically. When we take something that’s good for us and turn it into something that’s fun we’re more likely to engage in it. And when we think about that on a really big scale, it means everything. Engagement means everything. It’s like our everyday lives - we need to go and work out and feel good about ourselves. The only way we’re going to do that is if we make it fun. Some of us like to go the gym, some of us like to do sports - it’s the same idea. And for a lot of people who have different impairments and challenges they can’t always make those decisions for themselves. So, it’s important that we’re able to identify what those things might be, to get the outcomes we’re looking for.

Respite in Canada, sorry there’s a little Canada there, it’s quite big actually. All of our carer relationship spouses are mostly likely to be non-users of respite services, compared with parents, adults, children and friends. That’s what we’re finding more and more of now. And of course, then we have bigger problems with burnout crisis interventions and other needs for those that are carers. So, I’m gonna talk a little bit about respite care in Canada on 4 different levels; children in youth, adults and older adults, the everyday individual that needs support and 1st responders, 1st responders in Canada being fire, paramedics, military and police. Because believe it or not we probably don’t think about this often enough, but many of them are affected by the same isolations challenges that our individuals who have special needs are faced with. They have a hard time engaging and integrating into their communities on a number of levels. So, there is a different area for that that we’re going to talk about as well today, because it’s relevant and important for respite needs.

In Ontario, right now we have a strategy that’s called the Ontario Special Needs Strategy. This is a fairly new strategy. It connects children and youth to the services they need as early as possible. So, we’re trying to get then right at early school age, which is really important. And the three key reasons for that is to identify their needs earlier, so that interventions can be met, that co-ordinating service planning, which might be necessary for a lot of families who are just getting diagnoses and making the delivery of services seamless. So, we’re looking at it as a big altogether, whole-centred approach - everyone working together to make services accessible. Flexible funding is in particular our Ontario autism programme. Flexible funding is fairly new as in April of this year. What was happening is we had a wait list of up to five years for small children who needed intensive behaviour therapy. And what was happening is these families were sitting there from primary years of their children’s diagnosis, from the early age of 18 months ’til they were five, receiving no support whatsoever and on waitlists. The government said, this is silly, we haven’t go the resources to support you, so we’ll give you a big chunk of money and you can go use it on any kind of respite service you think your child can benefit from. What’s amazing about that is that there’s a flexible opportunity here to use it for any kind of therapy that you think your child would benefit. Some parents think that the more traditional occupational therapy, physiotherapy, is relevant for their child. Others want to explore other things, like using crystals and massage therapy and recreation therapy and yoga and all of these things before weren’t covered under that kind of respite care. Really giving parents an opportunity to think bigger about what their children may need right now in the interim, ’til we come up with a better system. What I love about these programmes, these are our kids form recreational respite’s group based programmes.

The picture in the middle - and I can share information of course, is little Lochlan on the left and Trey on the right. Little Lochlan is non-verbal autistic, has some very big behaviour problems and does not make eye contact and hasn’t got any friends. He came into one of our groups and this is Trey, Trey decided to blow bubbles, who also has autism, for his friend Lochlan and that was the response we got from him and it was amazing. Really great fantastic stuff. So, then we have respite care in Canada for adults twenty one plus who have special needs. Now like many countries this is a big gap when they age out. In Ontario, they’re twenty one when they age out of school, not eighteen. So, they have a little bit more time. We have something called Developmental Services Ontario. And that’s sort of the hub that you go to, to help navigate through what systems exist for you. So, you would go to them, they would do an assessment, that assessment would then determine what you can access as an individual. So, you can use funding for day programmes, employment skill programmes, things like that. The DSO funds all of that and navigates that whole system. So, there’s a little bit of flexibility there, but like every sort of system there’s bits that are broken too and families are struggling to get through. There are nine agencies across Ontario and it’s funded by the Ontario Ministry of Community Services.

This is near and dear to my heart, respite care in Canada for 1st responders just this year in April, which is really exciting, they just passed legislation that those suffering from post-traumatic stress disorder could in fact get eligibility for workers’ compensation benefits, which then could help take care of any kind of therapy they wanted to seek in order to make services more accessible. This is a really great thing for Ontario and for anyone suffering from post-traumatic stress disorder because most of the time they’re very self-directed. They’re’ not interested in getting involved in groups or getting together in a big group to talk about things. So, this allows them to use their benefits the way they need to do so. So, this is very new for Canada and it was huge and very important recently this year. You do have to have a diagnosis for a psychologist, but they’re getting a little more flexible with that. Not just for 1st responders either.

Senior care, this is one of our guys here. Believe it or not in Toronto there’s a great big old pool and they’ve emptied it out and they filled it with lake fish. And you actually take your seniors there and go fishing. It’s fantastic. So, this is Vince, and he loves it and he goes once a week with one of our rec-therapists. Yeah, he’s just … I’ve got all kinds of pictures of Vince and his fish. So, it’s pretty cool. So, the community care access centres, otherwise known as the CCAC’s. The CCAC functions like the developmental services of Ontario, but more broad. So, it’s for anyone that has various needs, whether you’re in hospital, you’re being discharged, whether you’re at home and you need home care. So, you would call the CCAC, they would come and do an assessment and then they would help allocate funds based on their assessment. Now like every system this system can technically be very compromised, and sometimes you know someone who potentially needs a bath three times a week, may only get it once every other week, etc. So, there are big holes in this system which I think we’re trying to work through and have been for quite some time. But they’re there for a good cause, they’re doing good work. This is sort of your one point’s navigation to the rest of the services in Ontario. So, that’s for everybody, that’s for whether you’re a child or whether you’re an adult, child, caring for aging parents, you would call the CCAC. OK this is the bit word heavy, so pay no attention if you don’t like, that’s OK. Evolving respite support.

So, Recreational Respite, my company is heavily involved in being as innovative as possible, with empowering caregivers and understanding that they have needs to know, have the tools and resources just as we do as professionals. We call them the professionals because there are the ones that are living with their loved ones twenty four hours a day. We are merely a glimpse in their day. So, one of the things that are evolving in Canada, I’m finding, especially, is support groups are evolving. Caregivers themselves are creating groups now as opposed to the agencies responsible putting things together - the caregivers are actually coming together themselves and saying we really need to do something together as a group. Let’s band together, that kind of camaraderie, which is fantastic. Social media - I’m sure you all know, you can go on social media, Facebook right now and look up caregiver groups and it will come up with hundreds of them from all over the world. This is a fantastic thing. People don’t actually have to talk to each other in person. Let’s be honest they’re quite burnt out anyway. Don’t often have the resources to do so. And this is a wonderful opportunity for them to engage with others from all over the world in all kinds of areas. So, this is a really interesting movement.

Crowd funding - so crowd funding is when you can come together and raise money. You don’t have to be a for profit organisation, a not for profit organisation. You can be Mr Smith, who lives on Browns Line, just start a crowd funding campaign and you can create a crowd funding campaign for any cause that you like. So, that could range from my son needs an adaptive wheelchair to I want to take my family on a vacation - true story. And believe it or not the power of people in crowd funding have been raising millions of dollars for other people’s causes. Now what’s really cool about this idea is that even as a for profit organisation - we call ourselves social enterprise cos of the work we do, but we’re umberella’d under the for-profit. We can actually raise money to have our programmes happen for those that have no funding whatsoever. And not for profit organisation can raise funds for their cause. So, the flexibility in crowd funding is immense and what happens is you can get really nitty gritty and home in on specific communities. So, for example here in Edinburgh you can actually raise money specifically for things happening only here or you can raise money from all people all over the world for something that’s happening right here. So, it’s an amazing movement for people who are really in need of money and accessing resources. So, crowd funding is most exciting for me because I think we’re not using it as much as we should and there’s a great potential to raise quite a bit of money for people’s causes and needs. Sounds like some other countries could benefit from that too, in my day here yesterday certainly it sounded like.

Partner programmes - so something that we’ve been involved in and created as a company was ways to partner with organisations that support individuals themselves who don’t have special needs. What that means is - do you have YMCA’s here, or Parks and Recreations? OK. So, what we would do in Canada is we would approach them and say; you continue to run your programmes for your members, but your membership is changing and they’re aging and what’s happening is Mrs Smith who used to come 3 times a week is no longer coming 3 times a week cos she’s taking care of Mr Smith. But they don’t know that. So, their membership is evolving and what’s happening is they’re not creating an accessible option for them as caregivers. So, we approached them and said, we would like you to have your programmes running - normal programmes, we’ll have a partnership programme where our skilled team members can come in and run a programme for your husbands, for your wives, for your sisters, for your mums. Whatever the needs might be. So, these kinds of partnerships have been really instrumental and very interesting, cos it’s changing the way that we’re thinking about how we build their programmes, their mandated kind of across the board programmes. And then they wonder why they’re losing membership. This is why. Cos a large number of them are now in caregiving roles. Parent groups - they’ll be lots … if there’s lots of questions hang onto them for sure because there’s all kinds of really cool stuff happening here. But parent groups, what they’re doing is bringing special needs children to a meet and greet and hiring a skilled professional to watch their children while they get together in social settings. So, they’re getting really innovative with how can we get the rest that we need, the break we need, but the skill we need in place to watch our children.

So, that’s something else that we’ve been rolling out and working in Canada to make happen across the regions. And extended health care benefits. Fantastic about this is a lot of people now with their old health care benefits from work, who still have them, are now including alternative therapies, which never before. They were very standard; your dental, your optimal and your medical and your pharmacy. But now they’re including things like recreation therapy, massage therapy, acupuncture, really open and broad. So, it’s giving people more flexibility. And then there’s your self-directed funding. So, there’s a lack of immediate support for sure and so therefore our wait lists are growing immensely, like everywhere. The self-directed funding obviously equals flexibility to spend your money on the various therapies that you see fit for your loved one. So, that’s been a good thing.

Now we get to the fun stuff, the really fun stuff. This is the innovative respite. My company’s been involved in - this is me and Ali in Kuwait, 2014. I was there, brought on as an expert and asked to teach their adult day programme that they have in Kuwait City. Now a little bit of background here. Their adult programme was twenty one plus, these were kids - no longer kids, young adults of post-Gulf War. These were babies that were born at the time of the Gulf War. So, what we had was complex needs, very complex needs. And what we also discovered when we were there is their parents had some severe PTSD. Now as you can imagine, in the middle eastern countries there’s not a lot of support in general, which is one of the reasons I was there. And one of the biggest topics we talked about was getting the parents the PTSD support that they needed while they were there as well. It’s the first time in twenty seven years that some of these parents had a chance to talk about their experiences. It is very moving, it’s very emotional. It was challenging in the sense that after we left we worried that it wouldn’t continue because their ways are a bit different and they have lots of money, but very little allocation for things like that. So, it really just needed … I was in there for fourteen solid days for seven until nine at night, just trying to plough away and say, you’ve got this money, you know allocate it to those who are suffering from PTSD. Allocate it to your children who are post-Gulf War, who do have severe needs. They were doing Duplo puzzles and primary books in the room all day, every day and maybe some gym time. So, that’s really the extent of some of the challenges in other countries. And we were there to develop new programmes, so it’s exciting, good stuff. In the end it worked out alright.

Technology - Recreational Respite as a company is launching an App. November the 1st this year. It’s been a very busy year. I’m going to talk a little bit briefly here about some of the partnerships that we have. One of them is a Capstone Project. It’s actually partnered with a university. And the university’s technology teachers, who are students who are grads, they’re in their grad year, and they needed a project to work out their final thesis. They chose Recreational Respite and we’re developing an App. Tell you a little bit more about the App. The App includes 4 platforms; meaning 4 different types of users, one being a professional, so someone who’s referring clients on a regular basis. One is the individual themselves, whether they have post-traumatic stress disorder, mental health or depression, isolation, anything at all. The adult child caring for their parents, their aging parents. And parents of special needs children. The App functions as if they can tap on the App and it will tell them exactly what’s going on in their immediate community. Groups, one to one services, tips and resources, tools and actual articles of information that they can use themselves in place, at home, while they are awaiting services before they access services. So, it’s quite extensive from an accessibility perspective, which is really exciting. Professionals will be able to use it and be able to look up different programmes that exist for their actual clients and be able to help better navigate what’s happening for them in their communities. Cos right now they’re so inundated with information they just hand a piece of paper that’s, you know, this long with a hundred names on them and say start making phone calls. Very difficult.

Some more ways that we have been innovative is education partnership and programme development. So, education being knowledge transfer, being able to share, being here today, being able to tell you some of the things that we’re doing in Canada, some of things that my company is doing specifically. International engagement, lecturing with individuals, training them. Staff training, so my example of the YMCA, starting to train these individuals as to how to work with children or adults who have different needs in their centres.

Volunteer training - we were talking about volunteers in Canada and one of the things the volunteers said to us was, we don’t feel we have the skills to work with some of the more challenging individuals. And so, we said, right, so we create a workshop and we’ve been training volunteers with some of those skills that they need and they’ve been feeling very empowered and very purposeful in their roles. Even more so. And we’re gaining more volunteers because of that. And mental health initiatives in school - one of the things that Recreational Respite’s just developed is a mental health programme called Staying Mentally Well, Socially Connected and Physically Fit. And it’s for youth, who are suffering from either bullying, depression, anxiety. And it’s going into the schools on PD days, before and after school programmes and developing programmes and running them for these kids, which has been really exciting too. Ways in which we partner - Canadian Armed Forces have actually hired us to develop programmes for them and their families. And their families are coming to the base to take part in the programmes, so it’s been a wonderful way of partnering. Other organisations will call on us to say, ‘hey can you come in and either give us new ideas, can you come and train our staff, can you tell us how to develop these goal driven programmes?’ That’s been other ways we’ve been able to work to, with the Alzheimer’s Society, Autism Ontario and the Children’s Treatment Network. Programme development in other areas, if anyone is unfamiliar with NSERC - does anyone know NSERC, the National Science and Engineering Research of Canada? It’s a government based organisation. And they’re always looking at finding ways to offer funding to help for research. So, finding more ways that we can deliver and create and make things accessible. They’re partnered with us and given us some great research in the past to help build our continued group programmes in the country. And those are just some other people that are government level funded dollars, who are now streaming down to social enterprises such as ourselves, which never before was done. Most of the time it’s not profit was the ones that received the money, and for profit you just needed to figure it out on your own.

Accessibility is critical - we talk about accessibility from a financial perspective, but it’s really important we understand that everything is accessible mentally, physically, emotionally, socially and financially. That’s extremely important to remember. I think sometimes we get caught up in the financial or the physical of a building in terms of accessibility and we forget the other pieces that are really necessary for things to be accessible.

Has anyone heard of Kerry’s Place Autism Services at all, in Canada? My Canadian friends. OK, so you’ve heard about it. So, Kerry’s Place - this is Kay O’Neil, she is the founding member sister. Her sister is Kerry. She’s a wonderful advocate for her sister, but they were the founding member of the organisation, it’s one of the largest in Canada. And I had the pleasure of meeting her - she actually lives in the same small town that I do, which I didn’t know, which was even stranger. And when we got together she wrote a book - The Birth of Kerry’s Place. Their struggle in 1973, with her sister, her sibling. How they kind of overcame the struggle and they developed this centre and the centre was for those that had autism. Could go to this respite centre and actually take part in outdoor nature programmes and farming and really neat stuff. That then evolved into an agency which now serves the entire Canadian region, which is huge, as we’ve realised over the past couple of days. There was someone who was talking about how big Canada is - land mass wise, and now they support the entire country. So, this is Kay, and what was really important when I met with Kay she said, we’ve got to continue to partner and work together, we have to break down barriers, we’ve got to make things more accessible. And we really have to keep our eye on the focus - we’ve got to keep focussed as to why we’re doing what we’re doing and who it’s for and often we’re so driven by funding and money that we lose sight along the way as to who’s it’s for and why we’re doing it. So, I love Kay, she’s wonderful person, she’s extremely inspirational, she’s about to go on tour. When I go back she’s asked me to accompany her. She’s an amazing spitfire of a woman, and this is the kind of programme and partnership that’s so critical for collaboration for respite on so many levels. And that’s where I end it.

Transcript Copyright:
This work is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International License