- 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.
- icare Coordinators icare Coordinators speak.
Alana, her family and workers
Alana had a serious accident aged 14. It happened after she arrived home on the school bus. She got hit by a car right in front of her house. She was taken by helicopter to the Children’s Hospital at Westmead. She was in a coma. She spent three very difficult months in hospital. She went home and did a lot of work on rehabilitation. She completed her HSC. Four years after the accident she was studying at TAFE and doing volunteering in aged care. She lives with her parents and sisters.
- Donna, Alana’s mother
- Mikaela, Alana’s sister
- Justine, Alana’s community support worker and service coordinator
- Liz, Alana’s case manager
I guess we thought we’ll get home and everything could just go back to normal. But it didn’t. So, it was a bit of a low down.
And then we started with care which was a huge thing. I was used to being in a hospital where everything was structured ran according to plan, according to time. So, hospital was great for me and Alana.
So, when we came home, everything doesn’t run to plan all the time and things happen - people drop in, kids go out, whatever.
Having a carer in the house really bothered me. They were in my territory. I was losing control over Alana because she was mine three months before that. So, I had a lot of issues with letting carers into the house. Although I knew I needed it to happen and I was grateful for it because I needed to get back to my life as well.
Donna, Alana’s mother
Alana's Story (13 mins)
Full text of the video Alana's Story
ON SCREEN: Alana’s story. In June 2008, aged 14, Alana had a serious accident. It happened after she arrived home on the school bus…
ALANA: I got hit by a car just out there. In front of the house.
ON SCREEN: DONNA Alana’s mother
DONNA: I was frantic in my office getting organised ready to leave and I got a phone call from a neighbour at ten past four saying that I needed to come home, that one of the girls had been hit by a car.
ALANA: I was taken in a helicopter to the Children’s Hospital at Westmead which I didn’t think was very fair because I didn’t get to see it or be awake.
DONNA: So, I spun the car around and I was just screaming through phone then trying to find out what was going on. I found out it was Alana, that she’d stopped breathing, that the helicopter now had her and that she was on the way.
ALANA: She went to the hospital. They waited for me to arrive.
DONNA: We waited for the helicopter… I waited for the helicopter to land and something went wrong. And I’ve later found out that Alana stopped breathing again. So, they resuscitated her again up there, anyway she finally came into emergency.
A doctor eventually came out and said that there was swelling in Alana’s brain and they needed to control it. At that point they couldn’t tell us if she was going to live or not.
DONNA: So, this is when you were still in ICU and it not long either. I can’t remember who gave you that blue bear, can you?
ALANA: No. But why is my hand on the towel?
ON SCREEN: Despite her serious injuries Alana survived…
DONNA: Because you had that graze from when you hit the road and it was keeping it up. But because of the drain that was in your brain they had to keep your body on some sort of level.
ON SCREEN: She had to spend three very difficult months in hospital…
DONNA: And that’s why you had big casts on your legs because your feet started to drop and you had no muscle tone. So, then they had to put these casts on and we had to take them off and on, off and on. It was a drama.
ALANA: That’s attractive.
DONNA: I know. It’s all that, see, NG tube. You didn’t like that.
DONNA: And back in the pool. I was a bit frightened that you wouldn’t know how to swim again. They told me I was being ridiculous. Oh, leaving hospital day!
DONNA: Today is 26th of September, so it was exactly 4 years ago today that we came home. So, I guess we thought we’ll get home and everything could just go back to normal. But it didn’t. So, it was a bit of a let down. And then we started with care which was a huge thing. I was used to being in a hospital where everything was structured and everything was OK. Actually, I probably was in my element in the hospital because my lists have lists. I like everything to run according to plan, according to time. So, hospital was great for me and Alana. So, when we came home, everything doesn’t run to plan all the time and things happen - people drop in, kids go out, whatever. So, having a carer in the house really bothered me. They are in my territory. I was losing control over Alana because she was mine three months before that. So, I had a lot of issues with letting carer into the house. Although I knew I needed it to happen and I was very grateful for it because I needed to get back to my life as well.
DONNA: So, what time does she have to be there? Do you remember?
ON SCREEN: Donna wasn’t the only one who had to adjust to the support workers…
JUSTINE: She’s got to be at Randwick at 9 o’clockish so we’d sort it best if we had someone arrive here at 7 am because of the traffic.
ON SCREEN: Alana’s younger sister also found it difficult having them in the house…
ON SCREEN: MIKAELA Alana’s sister
MIKAELA: I found care workers very annoying. Being I think I was 13 at the time, I felt that my privacy, my life, they were always there and I didn’t know them. Like they were in my house and I didn’t know them. Because I got picked up from school and then I had to come home to a person that I didn’t know. I had no idea who it was. But some of them were really nice, they were really considerate and they knew, sort of. They would say ‘Hi” and “How are you going”.
ALANA: Hi, Justine.
ALANA: Thank you.
JUSTINE: How are you?
ALANA: Good. How are you?
ON SCREEN: Justine is both a service coordinator and a community support worker
JUSTINE: It’s good. Yeah, I’m good. How has your week been?
ALANA: How has your week been?
JUSTINE: Yeah, it was pretty good, thank you.
JUSTINE: So, I’m here from 9 to 3 today.
ON SCREEN: She has coordinated services for Alana for almost 3 years
JUSTINE: Ok? Have you got your timetable from Liz? Do you know what we are doing today?
ALANA: We’ve got , no… the gym…
JUSTINE: We met with Alana and her family and discussed the amount of hours of care that would be required, the nature of the support and what our focus would be on that support.
ON SCREEN: JUSTINE Service Coordinator & Support Worker
JUSTINE: We discussed the types of support workers that we thought would be most appropriate for Alana. That included things like needed to be female, needed to be age appropriate, needed to fit into the community. At that time Alana didn’t want to be seen with anyone that might look like, you know, she has a brain injury, or anyone that was too much older than herself at the time. Because she just wanted to fit in and she didn’t want people to be aware that she needed a support worker. So, that was the initial assessment and then from there we recruited a team of support workers to provide the support.
JUSTINE: Ok, is everything ready and packed to go to the gym?
ON SCREEN: Alana has made huge progress since she acquired her brain injury
JUSTINE: What have you got there?
ALANA: I got my water, my shoes, my clothes, my disabled pass, my lip-gloss… Yeah.
ON SCREEN: But she still needs a lot of support and services…
ALANA: You can’t really tell just by looking at someone that they’ve got an ABI because it’s an invisible disability. But some ways of telling are when… Well, with me when I’m tired I shake or just in general I shake. I might get confused. And it’s harder to walk sometimes. And I get confused, did I say that already? Oh, and I forget lots of things.
ON SCREEN: Justine comes as Alana’s support worker one day each week
JUSTINE: I’ll just check and see if we’ve got any messaged from mum.
JUSTINE: My other role for Alana is that of her support worker, which means I provide direct support to Alana in her home and out in the community. That involves things like transportation, community access, supporting her with her rec and leisure pursuits, reporting. So, I’m still responsible to make sure I document everything that’s done during the day and make sure that gets back to the relevant people. Prompting, monitoring Alana’s moods are important. And just being aware of her fatigue signs, knowing what they are and being aware of what they are so that when I can predetermine if they are going to happen. Like, I’m at the stage now where I know Alana so well I can tell if she’s tired or if she’s approaching being tired. So, I know the warning signs now. So, it’s about being aware of what they are and knowing how to handle those. And just gauging her mood and reporting to her family about how the day has been.
DONNA: Hi, I’m home!
JUSTINE: Hi, Donna.
DONNA: Hi, Justine. How are you going?
JUSTINE: Good, good.
DONNA: How is she today?
ON SCREEN: Justine’s agency was the second to provide support workers for Alana
JUSTINE: Yeah, she’s good. She’s having a sleep right now.
JUSTINE: She went to the bed at about 2.30. We’ve been to the gym this morning. She completed the whole class. ??? but she was a little bit tired after that. Ok.
DONNA: Ok. Alright, see you next week.
DONNA: See you. Bye.
DONNA: Unfortunately the first agency that we had they weren’t very forthcoming with suitable support workers for Alana. And it’s probably the nicest way of saying that. So, we moved on to a different agency which we had much better rapport with. By that time also we were better at handling Alana’s brain injury. Alana was better at handling her brain injury. And we had been used to having carers at the house. So, we’d all made adjustments.
MIKAELA: Now I’m a lot better with that. Before when it first started I was so upset and cross but now because I don’t know… Like, I sort of grown up with them. Because I was so young when it first happened, and now it’s just like ‘Oh, hi, how are you going’. Like, it’s not a big thing anymore. It’s just life.
ON SCREEN: Liz is the Case Manager who oversees all services for Alana
LIZ: Earlier this year I took on her case management services. And case management very much shifted from a girl that would go to school with support at school to being able to work with Alana and her family of what’s Alana going to do now that she’s going to leave school. All of her friends were going on to college, university and we needed to find an activity, a role that Alana could work to, because her goal was to obtain paid employment and to drive a car.
DONNA: It’s always a bit of a juggling act.
JUSTINE: Yes, she’s had
DONNA: We thought maybe aged care nursing would be good for Alana because it was a bit of a slower pace and you know… Anyway, so they managed to find the local nursing home that was quite happy to have Alana as a volunteer with a support worker by her side. So, she started volunteering. Anyway, she just loved it and they love her, the residents just love her. And she’s good at it. She’s really good at it.
INTERVIEWER: What are you doing at the moment?
ALANA: I’m studying at TAFE and doing volunteering in the aged care.
INTERVIEWER: What do you like about your study?
ALANA: It’s interesting. Yeah. It’s a lot of work but it’s going to be good because I know. Because I’ve been in hospital I sort of know the good and bad side of nursing practices and what’s felt good and what didn’t.
LIZ: Alana volunteers one day a week at a nursing home and over the last 12 months has very much taken on more and more roles at that nursing home and has required less and less support from her attendant care worker in attending those roles. So, Alana is now starting to do a TAFE course or participating in a TAFE course to be able to look at paid employment in the aged care services.
DONNA: She wants paid work. As we all do. As we should all do. That should be something we all strive for as to support ourselves. And that’s what Alana wants to do. So, that’s our goal at the minute. Everything from the day Alana was hit by the car to today and forever in her life is going to be goal orientated. It’s the only way to move forward.
ON SCREEN: With much care and support, Alana is well on the way to rebuilding her life
JUSTINE: Let’s aim to have you home by 4. If the excursion went til 4… I’m not sure.
DONNA: If it makes it easier that’s the day Mikaela comes to my work after school.
MIKAELA: If you knew her back then and you know her now that is like a complete different person. She’s been able to do a lot more things and her rehab and everything has just changed her. She can do a lot more things. She can… She is like a different person now. From the time she got hit by a car and that first sort of couple of months at home to now she’s a completely different person. She knows what she wants and she goes for it. And she can do about anything now whereas before she couldn’t.
DONNA: And now she’s a pain in the bum. She can do everything, just ask her. She’s really independent. She wants to be independent. She managed to finish her HSC. It was life skills, which is an assisted part of it, but none the less she finished. She went to her formal. She did pretty much everything everybody else did. The only thing she really had to give up was sport. And as a family we all played netball being five girls in the family. So, we all made the choice to give up when Alana couldn’t play anymore. And we just found other stuff to do, mostly shopping so that was really difficult. But anyway. Now she is really independent and that’s probably been our goal from the beginning to make her independent person.
ON SCREEN: Thanks to Alana and her family for taking part in this video. Interviewer Paul Bullen. Camera & Editing Peter Kirkwood. Produced by Paul Bullen & Peter Kirkwood.
A Talk by Alana
A talk by Alana at the launch of the Living with Attendant Care Web Site.
My name is Alana, I am 22 years old and have 24 hour attendant care.
My introduction to Attendant Care began at the same time as my introduction to living life with a Brain Injury.
In 2008, the 26th June, a Thursday afternoon my sister Mikaela and I hopped of the school bus in front of our home in rural Hawkesbury when a car came around the bend and hit me.
I don't remember anything directly after that. My first recollections are vague and are from the end of my 3 month hospital stay.
I was attended to by the Care Flight Head Injury Response team who resuscitated me on the road. They flew me to the Children's Hospital Westmead, I had an operation to relieve the building pressure on my brain. I had a Catastrophic Brain Injury.
I remained on life support for 2 weeks. I was in a coma for six weeks. My family and the amazing staff at the Children's Hospital especially my Case Manager Deb, worked me hard through the Ranchos Scale from a 1 until I reached 6 which was our goal and on September 28th 2008
I left Hospital. During my stay I learned to move again, eat again, speak again and could take a few steps on my own. (I was back there every week for a long time doing therapies etc).
icare Lifetime Care
My Mum was introduced to Lifetime Care by our Nurse Clinician from rehab and without even knowing then I became a "Participant".
When I came home my Mum, Dad, and 3 sisters stayed with me. We talked to or saw my Case Manager Deb everyday as we prepared for life to go "back to normal". Deb liaised with Lifetime Care on my behalf. In the New Year Mum had to go back to her full-time job and my sisters to school and Uni so Deb had arranged "care".
It was Monday to Friday from 7am to 5pm in the beginning and then it was moved and adjusted with my life needs.
My trial and error journey with support
My journey with support has been one of trial and error.
At the start I needed a lot of support from my Attendant Care worker (ACW).
- The simple things like eating; when to eat, how much to eat.
- Walking, I was in a wheel chair for quite a while.
- Talking and thinking- I couldn't express myself properly or sometimes think of the words I needed.
- Everything- especially the thinking left me exhausted.
Having the right sort of ACW was hard, because I was having trouble already with communication it made it even harder and more frustrating if for some reason such as accents, cultural differences and manner had to be worked through.
Sometimes it was just impossible and an ACW / Participant relationship could not be formed.
Our home was not private anymore; this affected my family more than me. My family had a big adjustment and sacrifice. It was like having a stranger in our home every day. Walking on egg shells; smiling when you want to yell; normal family interaction just not possible.
This added to the difficulty of getting to know the new me.
Coming home from Hospital and life getting back to normal - NO!
There is not really anything that can prepare you, however Mum and I looked through the new Web Site a few days ago and she said that she definitely would have like to been able to access it. Mum's a researcher- she looks into everything, does her homework so to speak so I know she would have known it inside out and back to front.
In the beginning because I was only 14, at home with my family and because of my limitations I don't think I would have used it- but that was then.
As I have grown up my goals have evolved
As I have grown up my goals have evolved, each Care Plan is a little different.
So with my changing life my Care needs change too.
From: 14 year old surviving a Brain Injury, living with my family, doing everything with my Mum and Sisters
To: now living on my own, in my own apartment with 24 hour care- what a journey.
As you can imagine the Attend Care role has twisted, turned and reinvented itself over and over again.
My privacy both physical and emotional is probably the hardest thing to navigate with Care.
Again trial and error seems to be the only option. We "give things a go" if it does workout then we try a new approach.
My Psychologist also helps with this- giving me the tools to help me communicate my needs better to my ACW case manager.
Socialising with friends, maintaining a relationship with my boyfriend, family gatherings all require lots of configuring. Some days it's just hard work.
I know I would not be where I am today or accomplish what I do without an ACW.
I am lucky enough that the ACW team always listen to my concerns and make adjustments. While I do realise it can't be a perfect match all the time I know that they try to team me with someone that helps make each day a good one.
I have days when I just don't understand the roles- because I have 24 hour care it's hard to remember sometimes that the girls are working and are paid to be there. What is and is not appropriate.
Seeing and hearing others in a similar situations
I feel comforted to see and hear others in a similar situations on the web site. Isolation has been an ongoing struggle so to find a place that I recognise and connect to is relieving.
I have also enjoyed clicking through the web site, finding out facts about Brain Injury and all the relevant web sites.
I do have a wish list. .... maybe the addition of a Forum or chat room for participants could be included. ... just a thought.
A talk by Alana at the launch of the Living with Attendant Care Web Site.