Assistive tech and home modifications - the setup right for you

Anna-Marie (0:09 - 0:46)

Hello, welcome to SpineCare's 40 Voices for 40 Years podcast series, a podcast about childhood acquired spinal cord injury and dysfunction, produced by 2SER Radio on behalf of SpineCare Foundation. We'll have families join us to swap tips and share their experiences on plenty of topics. So, lots of big topics, but also the everyday things. I'm the executive producer for this podcast series, Anna-Marie Reyes, at the community radio station 2SER, 107.3 FM. This podcast is about assistive technology and home modifications.

Jess (0:50 - 1:18)

I grew up in a very regional area, so it wasn't as easily as accessible as what it is nowadays for us to just go and get something changed very quickly, as it's five to six hours away from the Sydney CBD. So, it was a very long trip for us to be able to drive anywhere to get anything fixed up. The assistive tech that we used in particular at that point in time, as we were growing up, was mainly wheelchairs. I've been in a chair pretty much nearly every day since I was seven.

Anna-Marie (1:19 - 2:10)

And you just heard Jess Pellow there. She is co-founder of the RE Foundation, created to enrich and enhance the lives of people with disabilities. She's also a wheelchair basketball athlete and mentor.

But before that, it's a privilege to have with us Tony Blanche, specialist occupational therapist with almost 30 years of working with children with acquired spinal cord injury and dysfunction, and their families, and even more years of experience working in pediatrics. Good morning, Tony. What a wonderful day to have you here on the program. I know that you have extensive experience in prescribing complex equipment, or what they call assistive technology, and home mods for children with spinal cord injury. Would you be able to outline the guiding principles?

Tony (2:12 - 3:25)

The guiding principles for all prescription is to have a client-centred view. Even with an understanding of the disability and the progression of either the disability or how that might play out over a lifespan. And in my work, it's been the child who is part of the family. So a childhood focus, a family focus, lets you establish a relationship that allows you to understand nuances of that particular family and of that child. The reality of a spinal cord injury is that we have a long spine and we have a long spinal cord, and the injury can happen anywhere along that cord, and the symptoms are quite different. 

So the guiding principles really is to know your client, listen to their particular story, the context that they live in, understand the diagnosis that they have, and potentially any other pre-existing factors. And sometimes with children, that's a bit tricky as well, because their development's playing out. And so that individuality of that's a really important factor for a guiding principle.

Anna-Marie (3:26 - 3:33)

So you also mentioned when you had this earlier discussion regarding looking at what makes life easy for parents as well.

Tony (3:33 - 4:47)

I think we always need to think about when somebody has an injury that would result in them requiring more care. Care factors affect the child and they affect the parents. So it is always a bit of a juggle as to how much the parent can cope with doing, what else other demands they've got on their plate. And I think that goes up and down over the time. As a therapist, I'm always mindful that there are times you have to actually back off what you really need to push for the child to allow the parent's time to be dealing with other things that are going on in their life. And clearly with a spinal cord injury, there's risks around that.

So there's some things that shouldn't be ignored. But then there's other aspects of timing for equipment prescription, timing for home modifications, the needs of the family. It swings and roundabouts, they go up and down. And I think that parents need to acknowledge that because they feel really guilty when they realise that they just don't have time to attend to that child because they have another child that has other needs. They might have another new baby. Life moves along and it gets messy and things get in the way of that. What other help can we bring in from externally? Demands are too heavy.

Anna-Marie (4:47 - 4:54)

So what are some of the more typically prescribed pieces of equipment and what have been some innovations in recent years?

Tony (4:55 - 6:10)

Generally, when a child has a spinal cord injury, it generally means that they're paralysed or partially paralysed. So their mobility is impaired. So a wheelchair is the focal piece of equipment and luckily the look and the feel for a wheelchair and the functionality for a wheelchair keeps getting better and better. The frames keep getting lighter. The colours get more extensive. The accessories get better. I think in my career, certainly the seating on the wheelchair frame as well acknowledges the fact that you're sitting in there for a lot of hours a day. You need to be comfortable. You need to be well-supported.

And with spinal cord injury, you've got pressure care needs. You've got bony bits on your bottom that are literally being sat on for many hours a day. Kids need to put in a whole day at school or a whole day at university and then progressing on to a whole day of work. Seating cushions are a great innovation. I think the other thing that it used to be that you had a power wheelchair or you had a manual wheelchair and that was worked out on which level of injury you had. Now we've got a range of technology options that you can add on to your manual chair.

Anna-Marie (6:10 - 6:17)

Would you be able to give us some specifics in terms of add-ons for wheelchair or anything to do with environmental controls?

Tony (6:17 - 7:25)

Power assists relate to a click-on wheel, more like motorbike handles, and a click-on wheel that you literally drive, push your wheelchair up to and you click onto it and you then drive it like a motorbike. And so that would really, if you want to scoot around town, have a bag on the back, pop your shopping in it, have that power to get up the hills and get up the ramps and get yourself home and not feel really exhausted. So they're a great addition. We've also got powered wheels. So, again, you can do some of the pushing and then the power in the wheels gives you a further big boost. There have been other add-ons, and I guess they're the technologies that will get better and better.

And in prescribing them today, we know that the next trade show we go to, there will be some upgrade. The other one is in the four-wheel drive extreme wheelchairs that acknowledge that because I'm in a wheelchair, I don't want to be wrapped in cotton wool and I want to go out in the bush and I want to be able to go places. And that can be for functional reasons because I live on a farm and I need to go and check the cows, live somewhere that I want to go on bush walks.

Anna-Marie (7:26 - 7:42)

Parents in care are certainly the experts when it comes to knowing their child and family. What should families expect of their occupational therapists and assistive technology companies? I guess critical information families can impart to their OT and equipment companies?

Tony (7:42 - 9:00)

For a lot of parents, the injury is new and they're trying to understand it themselves. In the initial days, they feel overwhelmed and think that somebody has all the answers. The parents can say, I live this every day. I'm going to tell you what I know about our lives, what are hard, what goals we have, what my child really wants to do and we don't know how to do that, and share the stumbling blocks that they've come across. A lot of the world is not made for wheels. It's made for walking.

It's not fair that the world's not really good for that injury. I think when that becomes the conversation about let's try and tackle some of those, what would make it easier, accepting what you can't change, going places that are fun and places where there aren't so many barriers, to get to a point that everyone trusts each other well enough to have honest conversations about things and to have equipment to trial and to see. We're often Google searching images because the population of people with spinal cord injury, particularly children in Europe and the USA, is going to be bigger than our Australian population. You wouldn't even know it existed to try. That's another good thing to do, is just Google all sorts of things.

Anna-Marie (9:00 - 9:07)

What can families expect of the process for assistive technology and home mods, and what are some of the practical considerations, Tony?

Tony (9:08 - 11:24)

The funding scheme that the child comes under determines the process to some extent in terms of when you would have people sent in to help you. Quite often with an acquired injury, the hospital rehabilitation team prepare for your discharge from hospital. So they will go to the home and they will start making, you know, talking about what changes you need to make. Under other systems where it might be an insurer involved, there's more formalised schemes to do that. Preparation for a home mod, again, is personalised. It can be quite confronting, and I think one of the things the therapist needs to map out for you is just over time how the needs might change.

Sometimes parents often say, I just couldn't think about the next step. I can't really imagine my child being 17 because they're only five now. So the life trajectory, it becomes a conversation around home modifications because you're looking forward to the future. I have to say the funding body's about to spend $40,000 on your bathroom. I don't want it to be wrong in five years. I want it to be flexible enough that this child and your family can grow within this. Little children don't take up much space. As they grow into adolescence, they want their space in the bathroom, and so do siblings. Somebody wants to spend longer on their hair and their make-up and looking in the mirror, and bowel routines for people with spinal cord injuries may well take an hour in the morning.

That's often an early conversation. Do we need another separate bathroom? And often even with a younger child, I say, yes, you do. Let the other siblings use their bathroom because they can get into it. Don't let it be the argument that, you know, this sibling now has their very own bathroom because it'll be okay for everyone but the other one won't. I think environmental modifications, often we learn a lot by looking at places that either work or don't work, what was great about the motel or what was great about that accommodation that was accessible.

Anna-Marie (11:25 - 11:31)

So a frequent focal room is the bathroom. What about other areas of the home, like the kitchen, the family room, or the backyard?

Tony: (11:32 - 12:57)

For me, it can be a little bit of a stumbling block. Families have dogs and they might have other children, so you can have a door that opens really easily for somebody in a wheelchair. Sometimes that's a security risk for others or lets the dog out or lets the baby out. I think just really thinking about how we're going to use exit doors and whether you need more technology and a swipe card, an electric door on that to allow the options for easy access but also for closing and locking and, again, looking ahead to see this child as a teenager and as a driver will want to leave the house on their own. 

So quite often the argument is with younger children, reasonably, as parents we're going to be managing the doors, kids not going anywhere on their own. So I think doors are important. The other thing is that in the perfect world we'd all live in spacious environments but we often have a lot of clutter and we value those things. Circulation space means that spaces that were adequate before all of a sudden feel really tight. Dining tables and kitchen, kitchen again, often we stage that because often children aren't doing their own prep but we often like to have a small table so when they get to make their after-school sandwiches or microwave something, we make sure that they could reach them and that can be on a separate bench without changing the whole kitchen.

Anna-Marie (12:57 - 12:59)

And what about lifting in the home?

Tony (12:59 - 16:45)

With paralysed legs, to get from one place to another you need to transfer. In a lower injury it could be that you can pull yourself to stand or move yourself to the other surface. As the injury becomes higher and you have complete paralysis, there's then transfers that you might need some assistive technology for. With children who are smaller, parents will lift them and will carry them because they can. One of the transition point -, when should you change over to using assistive technology and hoists? So there's different hoists and again, matching the level of the injury in the spinal cord, again we get back to that pair of parents.

And the lecture that all parents need is you want to be there longer term and you don't want to give yourself a back injury or a shoulder injury, which is common in parents that are looking after a child. And there will be some places that you do need to lift because you can't use a hoist or it could be that you're trying to get into a boat, out of a boat. There's a number of things. If you're just doing them every now and then, the other bit I'd say is get two people to do it. Share the load if you can. Hoists help lift. Again, the carer is important and valuable. If you're hiring carers, the choice is eliminated for you because we shouldn't put anyone at risk. But there's a workplace standard that says no lifting.

So that's where we need technology and that is in the form of different sorts of hoists, different sorts of slings, again matching the need. Some families in wanting everything for their child and to try and meet all of their needs want all the equipment. There's the argument of you need the right equipment that works well because that's what's going to be used. And I often use the analogy of in a household, all the kids want to play on the best computer. Even though their iPad might be okay, they want access to the best in the house. If you've got three pieces of equipment lined up, they will always gravitate to one of those because it meets most of their needs.

In sorting through equipment, it is, again, try and move on what's not relevant at the time. I think we've got away from particularly OTs aren't pushing any barrow that more pain is more gain. If you can get your exercise in another way, using your arms and shoulders and body in different ways, that is better than trying to slog it up a steep hill. Save your energy for other things. The other thing is that kids in wheelchairs used to just get so tired pushing at school that they wanted to sleep in their maths class. So we say now just get around, have fun in the break, come in fresh because you're at school to learn.

And then again, just try to balance up then how can we give you some cardiovascular exercise away from your just primary mobility needs. And that's all about planning out the day and just trying to improve independence, participation, freedom of movement. There's a goal and that we need to look at some assistive technology that might help or a different technique or a different way to do that. That rigid thinking on anyone's part doesn't let us explore all the avenues that might be available. We can't just go, okay, that's not possible how things are. How could they be?

And that leads us to innovation and ideas. And I think that's what parents really need to try and do we say ask three questions, ask four questions, ask five people. Don't stop at your first. The first time you said it and someone said that's not going to happen or that doesn't exist, they're the barriers to be challenged I think.

Anna-Marie (16:45 - 17:14)

And you just heard from Tony Blanche there. 

And now over to Jess Spellow continuing the conversation about assistive technology and modifications for daily living. She's co-founder of the RE Foundation created to enrich and enhance the lives of people with disabilities. She's also a wheelchair basketball athlete and mentor and former peer and social support coordinator at Spinal Cord Injuries Australia.

Jess (17:15 - 17:45)

My name is Jess. I am 30 years old. I've had a spinal injury since the age of seven. And I live in Sydney and just do life really in general. I work, I hang out with friends, go out, stay in, play a little bit of wheelchair basketball. So if any wheelies are out there, it's always a good fun to get into. And I'm a C6-T3 incomplete quad, so I'm able to walk and very fortunate in that.

Anna-Marie (17:45 - 17:55)

So going from childhood into adolescence and then adulthood, how did your assistive technology and home setup change as you grew?

Jess (17:55 - 20:29)

I really grew with my assistive tech. So as I was growing up, I would get chairs that were slightly a little bit bigger than what I needed them to be so I could grow into them. I grew up in a very regional area. So it wasn't as easily as accessible as what it is nowadays for us to just go and get something changed very quickly. I was five to six hours away from the Sydney CBD. So it was a very long trek for us to be able to drive anywhere to get anything fixed up.

The assistive tech that we used in particular at that point in time as we were growing up was mainly wheelchairs. So I've been in a chair pretty much nearly every day since I was seven. If I don't have them for distances, then I'm back in bed by sort of 10 o'clock, 10.30 because I'm exhausted. So I can walk and I use that to my advantage. But I'm selective with how I walk and it took me a long time to work that out from childhood to adulthood. It took me quite a few years of wanting to be on my feet as much as possible because it made me feel quite unquote normal. I could play with the kids and stuff my age and I could play on the equipment and the monkey bars and play sport and football with the boys and stuff, but it was just exhausting me and tiring me too much. 

It took me a while to understand that in myself as much as I had adults and caregivers and parents telling me that was the way it should be. It took me a long time in myself to really get to that spot. But what I will say is the assistive tech that I had early on, I've had AFOs since I was a kid and then I've had many different AFOs over the years trying to work out what was best for me. We finally settled on a non-hinged AFO. But I had GI AFOs for a long time as well, which also assisted in my walking, particularly with my quads. When I walked, wheelchairs, like I said, I had a walking frame for two years after my injury and then I went to walking sticks and then I went from the four-pronged sticks to the single-pronged walking stick and now I walk unassisted. 

It's more about those first couple of years after injury where we were more working out what we would get back. We used to swim a lot as well because it was great for rehabilitation. It used to give my joints some very big, much-needed relief. It worked the muscles that I have in my body in different ways without being worked outside of the pool. I also had a tilt table as well that I would do stretches on it with my dad and I would walk on a treadmill for 20 minutes every morning or afternoon.

Anna-Marie (20:29 - 20:32)

Were there particular skills that you had to have to maintain equipment?

Jess (20:33 - 21:05)

For me, I just needed to have an idea about how my equipment worked for a start and then from there I could either instruct someone to my equipment or I could get my equipment fixed by someone else. I was very fortunate that my dad in particular was very good with anything that he could fix, any chairs, any equipment, anything like that, and if he couldn't, then we lived on a property. We lived on 1400 acres. Anything he couldn't fix, we had to send away to get fixed. It would take a while, but he would do absolutely everything he could to fix it himself.

Anna-Marie (21:06 - 21:19)

So you've obviously had lots and lots of experience in assistive technology and home modifications. What are the key ingredients, do you think, for getting a successful outcome, getting the right one for you that fits you well?

Jess (21:20 - 23:23)

I think it's a big mixture of realising your strengths and weaknesses and attacking these strengths and minimising the weaknesses. It's really minimising what you struggle with so that you have a more productive day. So a lot of people talk about assistive technology being like the fix of everything. I find minimal modifications I need for my place and again, I have a shower stool. I don't use a commode because I don't need to use a commode, but I have a shower stool and that works for me and the apartment that I currently live in really doesn't really have any modifications. The only thing I did was I get floorboards put in and that was really it.

The amount of ease and manoeuvrability that I have in my apartment now is just tenfold to what it used to be. That in itself has been one of those things where I've not had to go over the top with my assistive tech, but it's something small that I've been able to utilise. It's given me the biggest outcome. So it's even something as simple as using a smart drive to assist you around your everyday has really been the biggest thing as well. I think technology has come a long way in the sort of 23 years that I've had my spinal injury especially. Small things like different kind of different pressure tyres or different kind of wheelchair tyres, different casters as well. As much as I love the light-up casters when I was a kid, the wider set casters are much better for me. Even in terms of using frog's legs on my wheelchair because they were better for soft absorption, but I struggled more with jumping up and down gutters than I had them. 

You've always got to try all these things to see if they work for you and if they do work, then you go for it. But if they don't work, it's not going to be the end of the world because we're so adaptable when it comes to what we need and what we can use to get us through. So I think that's always been the big key is adaptability and willingness to really find how to become adaptable as well. But not pushing it to the point where we're exhausted throughout the day because we try to do too much and be hyper-independent when we don't necessarily need to be.

Anna-Marie (23:24 - 23:40)

So Jess, getting funding for assistive technology and modifications can be quite daunting and frustrating. Any tips for working with coordination of supports, case managers, NDIS? What strategies did you find most effective for getting what you need?

Jess (23:41 - 25:05)

So I'm in a very unique situation where I've actually just applied to the NDIS. I've been self-funded since I was a kid. But in my situation, we always used to order in bulk if we needed anything. Because what we needed, being so remote in particular, it was really a massive struggle at times. Us ordering in bulk and then putting those orders through in the previous funding body that we were in, it was a real big struggle and they really didn't like it. I think for me, the problem and the issue lies with the people who are saying yes and no because they don't live with the kind of injuries that people live with in everyday life.

It's more of a disability awareness on their part. But I think finding yourself a really good occupational therapist who really understands what your requirements are and being very strong in your convictions and knowing that you are the master of your own body. You are the expert on your specific injury. Every spinal injury is completely different. It's all individual. It's all unique. It's like a thumbprint. Being able to work with your clinicians and your professionals in that sense is such a big thing for you to be like, I'm hearing what you're saying and I'm open and willing to try these things. 

But don't forget, I am the master of my own disability. I have a PhD in me. That's the biggest one that I think people need to remember. And if you really want to work with a particular product, then you get the opportunity to write in that product that's going to be the best for you.

Anna-Marie (25:06 - 25:20)

Talking about those products, I understand you have some favourite pieces of equipment. It's not actually assistance technology. Can you tell us a little bit about those daily essentials and why families might like to think outside the box?

Jess (25:20 - 26:55)

A lot of the big ones that I use, that I actually bought and paid for myself, was the Butcherblock Island on Wheels, which has given me so much independence when it comes to everything that I do in the kitchen because I can cut directly onto it. It's phenomenal. It's been specifically set up and designed for me personally. So I got the measurements and requirements. I've worked with a cabinet maker. I picked out the design myself. It's really nice black steel. It's heavy. If I choose to move from this place, I'll be able to move it into my next place that I intend to live in. And it's one of the big ones for me that I really love. It's just given me so much independence in the kitchen. It also means that I don't have to stand up and fatigue myself further in that regard as well.

The garden that I have out on my balcony is actually made out of pallets. So it's one of those pallets where you've actually got the little box that kind of sits over the back of it. So I worked again with a cabinet maker because they were really open enough and just happy to help out in any way they could. Like the flower boxes and stuff like that, like off the pallets to be able to pull it down and then put it back on and stuff like that. So it's basically like a hanging wall garden with three big deeper garden tubs at the bottom of it. Again, it was more for me because it's like I want to get into a little bit of gardening. I wanted to do a little bit of this. And that thing is really fun for me to be able to do because I would grow tomatoes and stuff like that, which has been great. Grew some strawberries a little while ago.

You know, simple things. And it's just been one of the most really nice things I've actually enjoyed quite a bit.

Anna-Marie (26:57 - 27:05)

Any final words of wisdom for young listeners and families navigating their options for assistive technology and modifications?

Jess (27:06 - 28:06)

Try everything that you can try and find what you're comfortable with. So if it's something that may not be quote unquote industry best or gold standard, just find what works for you. But go with what you feel is true to you because again, you are the master of you. You have a PhD in you. And don't forget that if you don't like it, you can always fix it up. If it's not working for you, then you're going to be able to do whatever you need to do. 100% is always about trying everything, giving everything a go. And that includes different chairs, different products. So chairs, commode, different ways of doing like your personal care routine, different ways of pushing your chair instead of pushing on the rim, go for the tires kind of thing.

It's just trying different things always and just being open to different things as well because the way that you really do become open to these different experiences is always going to be the way that really assists you moving forward.

Anna-Marie (28:07 - 29:07)

And you just heard from our guest Jess Pellow there, who is co-founder of the RE Foundation, also a wheelchair basketball athlete and mentor and former peer and social supports coordinator at Spinal Cord Injuries Australia. You also heard from guest Tony Blanche, specialist occupational therapist with almost 30 years of working with children with acquired spinal cord injury and dysfunction and their families and even more years of experience working in paediatrics. 

You've been listening to SpineCare's 40 Voices for 40 Years, produced by Radio 2SERFM. You can subscribe wherever you get your podcasts. This series is recorded in Sydney. We acknowledge the Gadigal people of the Eora Nation as the traditional owners and ongoing custodians of the land where we record this podcast. We extend our respect to the traditional owners of the lands that you and our guests join us from. I'm Executive Producer Anna-Marie Reyes - and see you in the next podcast.