• People's stories Interviews with people getting attendant care, family members, workers . . .
  • Alana Alana had a serious car accident aged 14. She has a brain injury.
  • Rob Rob had a stroke. He was in a nursing home and now lives at home.
  • David David had a car accident when 20. He has a brain injury. He has returned to work and to driving.
  • Karel Karel had a bicycle accident. He has a fractured spine. He lives with his wife. They are in their 80s.
  • Emma Emma was hit by a car. She has a brain injury and needs 24 hour care.
  • Christakis Christakis' head went back in a car accident and he broke his neck. He lives with his wife.
  • Attendant Care Provider Brain Injury Service Coordination Managers and Community Support Workers.
  • Attendant Care Provider Spinal Injury Service Supervisors and Attendant Care Workers.
  • Case Managers Case managers.
  • Life Time Care Coordinators Lifetime Care and Support Coordinators speak.

Lifetime Care Coordinators

Lifetime  Care and Support  Coordinators

The Lifetime Care & Support Scheme funds treatment, rehabilitation and attendant care services to people severely injured in motor accidents in NSW, regardless of who was at fault in the accident.
People who are eligible for the Scheme will have a spinal cord injury; moderate to severe brain injury; amputations; severe burns; or will be blind as a result of the accident.
Lifetime  Care and Support Coordinators facilitate the treatment, rehab and care for catastrophically injured people with spinal cord and brain injury.

  • Rosemary, Lifetime  Care and Support Coordinator
  • Julia, Lifetime  Care and Support Coordinator
  • Garry,  Lifetime  Care and Support Project Officer
  • Geraldine, Lifetime  Care and Support Coordinator

Hospital is the first process that they move through. They are often in a specialised unit like a brain injury unit or a spinal cord unit and we get involved pretty much whilst they are still in hospital. I go and meet them, give them some information about the scheme, and we usually appoint someone who is a case manager who oversees a lot of their treatment and care. We go from there and see what their needs are and how we can assist them.
It takes a long time for families and people to adjust to the idea of being catastrophically injured. It’s not an everyday event. You might hear about car accidents but most people assume that they are never going to be involved in one. And when it’s clear that what you’ve got are some permanent injuries there is a major shift that people move through. I think a lot of it is disbelief in the beginning. . .

It’s along process. Some people are in hospital for well over a year. And then it’s moving out of that medical model and back into the community and the challenges that it brings about. So, leaving that safe environment families often worry that “Is it too soon? Should they stay here for a while longer?” That kind of safety net of being in a hospital to being discharged and going back into the community and facing new challenges.

Ideally you find out about attendant care whilst you are still in hospital before your discharge. Most people have had no involvement with care so having someone in your home a lot is a different thing. Doing things for you that you could do for yourself pre-injury can be quite invasive. So I think for some people it’s getting over the idea that someone very new is going to be doing some intimate things and for others it’s just the idea of having someone there all the time who is not a family member, a stranger in your home. Yeah, it can take a bit of adjustment.

     Rosemary, Lifetime  Care Coordinator


 

 

 

 

     LTC Coordinators' Story (14 mins)

Click on image to go to video

Full text of the video Lifetime Care and Support Coordinators' Story

ON SCREEN: Lifetime Care & Support Coordinators

ROSEMARY: We’ve got a young fellow who’s moved out of home now. So, he had not a lot of care when he had a brain injury, not a lot of care when he was at home. He was pretty reluctant to have care at first and felt that it would be really intrusive…

ROSEMARY: I work for Lifetime Care & Support and I’m a coordinator. We are involved in facilitating the treatment, rehab and care for catastrophically injured people with spinal cord and brain injury are mainly what we see but multiple amputations, or blindness, or burns as well.

ON SCREEN: ROSEMARY Lifetime Care Coordinator

ROSEMARY: Hospital is the first process that they move through. They are often in a specialised unit like a brain injury unit or a spinal cord unit and we get involved pretty much whilst they are still in hospital. I go and meet them, give them some information about the scheme, and we usually appoint someone who is a case manager who oversee a lot of their treatment and care. We go from there and see what their needs are and how we can assist them.

It takes a long time for families and people to adjust to the idea of being catastrophically injured. It’s not an everyday event. You might hear about car accidents but most people assume that they are never going to be involved in one. And when it’s clear that what you’ve got is permanent injuries there is a major shift that people move through. I think a lot of it is disbelief in the beginning. Things change fairly rapidly when they are in hospital and they're looking at planning things day-to-day, taking one day at a time. And then as things progress and they move through their rehab stages usually out of intensive care and into a ward situation the rehab starts.

So it’s along process. Some people are in hospital for well over a year. And then it’s moving out of that medical model and back into the community and the challenges that it brings about. So, leaving that safe environment families often worry that “Is it too soon? Should they stay here for a while longer?” That kind of safety net of being in a hospital to being discharged and going back into the community and facing new challenges.

Ideally you find out about attendant care whilst you are still in hospital before your discharge. Most people have had no involvement with care so having someone in your home a lot is a different thing. Doing things for you that you could do for yourself pre-injury can be quite invasive. So I think for some people it’s getting over the idea that someone very new is going to be doing some intimate things and for others it’s just the idea of having someone there all the time who is not a family member, a stranger in your home. Yeah, it can take a bit of adjustment.

JULIA: Most agencies offer for the family member or the participant…

GARRY: Yeah, to meet them.

JULIA: …to be able to…

ROSEMARY: To interview the…

JULIA: Yeah, to conduct the interviews or once you’ve narrowed it down to 2 or 3 which is probably should be encouraged more I suppose…

ROSEMARY: Yeah.

JULIA: The process is really to try and pick a provider and then pick care workers if the person is able to do this or their family members are able to do that.

ON SCREEN: JULIA Lifetime Care Coordinator

JULIA: There are lots of resources on our website about picking attendant care providers and also questions that participants might want to ask. It’s really up to them once they pick a provider whether or not they want to be involved in the interviews of the individual attendant care workers or whether they want the agency to just handle that. I would suggest that where possible they should be involved in the interviews of the actual workers because it’s pretty invasive process and it’s pretty invasive having people in your home initially and the most people have never experienced that before.
I think it’s pretty hard for most people. I think that’s a huge challenge to have somebody come into your home and do personal care. It’s not called personal care for no reason. For most people hopefully it’s less daunting over time as they get to know the individual staff members and the staff members get to know them, and know their routine, how they like things. Really it’s a process of adjustment. Some people might have less and less care as time goes on, but other people won’t. Hopefully for most people it gets easier as time goes on.
Cultural issues can be important particularly around meal times. And often certain cultures may only want a certain gender care worker. But if someone needs meals prepared for them and the care staff can’t cook their whatever dishes that, you know, can create a lot of tension. But yeah, I think lots of people if they are non-English speaking would prefer care workers that speak their native language.

GERALDINE: He interviewed the care agencies here, three actually, when he was at a hospital and then chose one and is starting to use them…

GERALDINE: Often we’ll get a request whereby it has to be female carers coming into the home or male carers or people of a specific cultural background. Especially if somebody’s cultural beliefs are really strong and really inherent in their life then, you know, they want to marry that up with carers.

ON SCREEN: GERALDINE Lifetime Care Coordinator

GERALDINE: Where that gets really difficult is where to source those carers from because you know there isn’t just a huge pool out there that anyone can pull from. But if there is a good fit, for example, if a carer is a good fit culturally then rehab can really take off.
Some of the issues I’ve come across for people receiving attendant care in the country are things like troubleshooting when a carer doesn’t turn up. So, I know of a number of case managers who’ve gone in, slotted in because the attendant carer didn’t turn up. I was doing a review with one particular client out in Central West. We were there and the carer suddenly had to go home because they had a very sick child. So the case manager took on that role until such times as the agency was able to send in a replacement. And that’s not something that happens in the city.
There are advantages and disadvantages of living in the country. Everybody knows that a particular person has got an injury, but when things are needed on a more urgent basis the country seems to respond to that quicker sometimes. For example, a hospital will open up its doors and offer whatever in their store room if attendant carers need things for personal hygiene etc. So, there are advantages.
The disadvantages are often the carers that come in to do quite intimate things with a participant sometimes are living two streets down and you could run into them in a shopping centre. So, those things can get akward. Yes.
The other real issue for rural is just recruiting staff. It’s quite difficult especially if somebody needs a high level of care or their rehab goals are pretty high level. For example, they are returning to work, returning to a pretty close vocation to what they were doing before then the attendant care workers really need to have a higher level of education, really skill themselves up in order that  they can meet that person’s needs.

GARRY: I can think of a couple of people when the care started to actually really work quite well. That’s when they started to get more involved in rehab goals initially and that carer actually facilitated that. And that’s when the family have also started to then I think understand that that’s more than just looking after the person…

GARRY: My role is a project officer, specifically in vocational projects. Projects are really about assisting people to maximize their independence post severe injuries such as people with brain injury, people with spinal cord injury.

ON SCREEN: GARRY, Lifetime Care Project Officer

GARRY: And what we, the authorities, are interested in actually is increasing people’s participation in community after an accident. I guess it’s a recognition that they are going through something that’s quite a major interruption really to what their life was and that initial stage often is about a lot of medical intervention. It’s about what can we do to actually maximise someone getting back to, you know, making a good recovery.
The authorities now have as many people that are living in the community as what they have in that medical system so what we are trying to do is to include participation as almost part of that medical side as well. So, instead of waiting until someone has been sort of signed of by the doctors as ready, you know, ‘We’ve done what we can’, what we see in some of the projects that we are involved with there is actually more like early intervention. So there is still enough time after someone’s had an accident while they are still in their early stages to start thinking about what it is they are going to be doing, how it is they are going to be doing it.

So, we’ve actually got people that are actually working with them, vocational consultants that are actually working with them. They are coming up with some goals to actually do while they are still in those early stages, still in a hospital stage. They may be able to do some study, they may be able to get used to some technologies that are there, there may be some adaptive equipment that needs doing. We can liaise with their employer if they are working at the time of the injury. So, what we do know is that the most chance the people have got of getting back to work is if they go back to something that’s familiar to them and an employer that they already know. So, making sure that they keep those contacts alive and that those people are aware of what they are doing is a really important part of it as well.

Then what we look at doing is once we are clear about, you know, we’ve got some goals, they are clear about what is this that they do want to do, what are the supports they need to do to be able to make that successful.

I think in all areas of attendant care, and it’s not that much different in the work situation, it really is about communication. It’s really having someone there who’s working with the participant and in some cases the participant is the person who is actually driving it all, with spinal cord injury specifically more commonly. With brain injury where often there is a reliance on someone else and that could be a case manager or could be a rehab consultant liaising with the attendant care agency so that they are all working towards the common goal.

ROSEMARY: What I most enjoy about my work is helping people and seeing people recover from injuries. Also, seeing people that were once upon a time not covered by any scheme get some assistance. So, Lifetime Care isn’t particularly interested in liability.

JULIA: What do I most enjoy about my role? I suppose when things go well. When people get back on track, get back to work or get back to doing their life roles that they did pre-injury as best they can.

GERALDINE: Looking at a report, seeing the evidence that somebody needs something and being able to say “Yes, here are the funds, run with it”. That’s the best part of the job. I also very much enjoy meeting the person. To me they are not a number and that’s the last thing I’d want any participant to think that they were just a number. I know sometimes we have to say “No” to certain things which are awkward, but it’s nice to out a face to a name and a name to a face, vice versa. And that’s a part that I enjoy as well.

GARRY: It’s not for the money. It’s something more about “OK, it’s nice to actually assist people”. For me participation is really a key to getting people back to actually doing things. I find it really inspirational just to see the human spirit really and how people through adversity continue to want to do things and continue to want to improve. In many ways sometimes it looks from an outsider’s point of view that it’d be easier to not do and people refuse to not do it. This is spirit. This is we actually want to improve ourselves. And we can do this. And I think as over time you see that confidence that comes through it’s really quite inspiring to see how people can overcome adversity.

GARRY: So, what’s the process that you see that the clients are moving through?

GARRY: It is a process. I think that’s really important to remember. And often I think people and families especially when they first confronted with severe injury they are scared by it all I guess. There are a lot of unknown things there. And I think that what I’d be saying is that’s really important to talk to people. Have a look out there, get your information. Because by being informed you can actually find that people do remarkable things. It’s a very different life for many people than what it was before, but it’s a really rich life still and it’s about the individual having a say in guiding that path.

GARRY: …physical rehab while they are doing some of the physio so that the person doesn’t need to get the physio coming in all the time. It’s more normalises it and they’ve got less people in the house that are actually helping them to be able to do their stretches and…

ON SCREEN: Thanks to Lifetime Care & Support Authority. Camera & Editing Peter Kirkwood. Produced by Paul Bullen & Peter Kirkwood. www.living-with-attendant-care.info.