Good afternoon to all of you. Welcome to Summer Foundation's annual public forum. My name is Paul Conroy and I'm the chairman of the Summer Foundation board.
Our forum is being held on the lands of the Wurundjeri of the Kulin nation and I wish to acknowledge them as the traditional owners.
I'd also like my respects to their elders past and present and to the Aboriginal elders
of the communities who may be here today.
Our theme for this year's forum is From Hospital to Home. We will be
exploring the discharge journey for people who leave
hospital with complex disability support needs.
Everyone here today, along with those of you who are joining us live via Facebook, are eager to hear
how we can achieve the very best outcomes for people with complex needs as they move from hospital to home.
We encourage you to contribute thoughts and comments both during and after the forum via
social media. On Facebook, you're welcome to interact via our livestream
and on Twitter, please use the hash tag, #Hospital2Home. So let's get started.
First of all, I would like to introduce and welcome back the host of today's forum Beverley O'Connor.
Beverley is the presenter of ABC News 24's The World program and this is her third consecutive year of hosting our forum.
We feel very lucky to have her. Thank you for coming back, Beverley, and over to you.
Paul, thank you so much. I can't tell you what a privilege and an honour it is to be associated with your organisation, the Summer Foundation.
I have learned so much about such vital work that the organisation does. So, it's delightful to be here
again and to have this very, very important discussion along with our guests, both up here on stage and in the
audience. Today, we're going to be discussing the very critical point in time
time when people with complex support needs have to leave hospital.
The NDIS provides a real opportunity for those people with disability to leave hospital
with the absolute right support in place, to support the choices
that they have made about what their life is going to look like post-hospital.
It's probably for the very first time the NDIS is putting in the position - the
patient in this position as decision maker. How are the health and disability services responding to this new patient-driven environment? Let's take a look.
Luckily most people don't
end up here very often but when they do usually they're out really quickly.
Unfortunately for me I haven't been so lucky. From experience I know what
happens in hospital can have a huge impact on the rest of your life and,
believe me, the treatment that you get inside those walls isn't all that
matters. Planning for what happens once you leave is just as critical, how do I
know? Because for the last 10 years my home's been an aged care facility. What
does it take to obtain the very best outcomes for people with complex needs as
they head from hospital to home.
So, let's kick off. Dina Watterson is the Associate Director of Allied Health at Alfred Health.
Let's talk firstly, why is the point of discharge so critical for people with complex support needs,
particularly those whose level of support has really increased?
Sure, for quite a few reasons. At the forefront of it there is a massive adjustment,
I think, from going from hospital to home for everyone leaving hospital.
For those who experience a new disability or new complex needs, that level of adjustment can appear to have so many obstacles ahead of it.
The discharge planning team or the clinicians who support
people on discharge have to try and prognosticate, if you like, what the care needs
or what the support needs might be for that person but really what the NDIS
does provide and we have a pathway that we are now taking is much more about a
person wants, so we really need to work together and we do work with the person
in front of us to look at what level of support they think they need but also
setting them up to ensure that we can support independence as much as possible
to support participation in the community as much as possible and you
know, we have had to adjust our thinking regarding that a little bit
throughout this journey of NDIS but certainly if we start those discussions
early, if we look at the possibilities, if we listen and support the person who's
entered the hospital system to achieve their goals at that early stage
we can certainly set them up for a great pathway. I wondered too, have you noticed has it become enormously
obvious to you, what the magnitude of difference is, if there's a good or bad outcome.
Certainly from a health perspective we will look at readmission and people needing
to come back into the health system because of the discharge pathway is
something that we absolutely look at all the time and that's becoming more and more apparent through this process of NDIS. If we do
the best we can to support the person on their transition to health from hospital to
home we actually support or prevent hopefully prevents the process of the
person needing to enter back into the health system or their health deteriorating or their care
needs or carer burden increasing, they're all the
sorts of things that we're certainly considering. So it's really important to get it right the first time.
Before we continue the conversation, if we have any more phones, whoever's responsible is going to buy us all champagne.
Maybe get them on silent if you can, quickly
Let's move on to Brynn Lewin, the Occupational Therapy Manager at Austin Health.
Tell us about the participants your team support,
and give us a sense of who they are and why their needs differ so much.
I think in hospital there are probably two groups of people, there's people at some point in
their adult life who have experienced an accident or an injury and they have a
new disability, for lack of a better word, and then there's another group of people
who may have had a minor or less significant impairment or disability for
a few years and things take a turn and they come
back into hospital and they need to now go home for the first time with a
much higher level of support and and then what we refer to as complex
needs. So complex needs being you know equipment and access and to
support workers and and really people to help or equipment to help with
most things throughout someone's day so those are the two kinds of NDIS
participants in hospital that we're working with and I think what makes
these NDIS participants unique is really the lack of a lived experience. So we're
talking about people people may have three days of lived experience and of
course there are people with lived experience who are in hospital as well
so it's really hard to navigate how to set up someone's life for the first time
when when they can't picture it and they're relying on a large team of
people to help them picture it and make decisions and choices and plan. And I
think, you know, the NDIS is fantastic because it offers us the opportunity to
do that. Without the NDIS it's hard to think or plan or
make decisions, and choice and plan. There wasn't much on the table. So, in
that way, for this for this group of people, it's fantastic that they they
have those options now to make choices. The other side of that coin is that
it's really complicated to do that. So there's a breadth of things on
offer. There's ways to go about acquiring supports but
they're limited and they're not always suitable to people who may have a new disability and
can't necessarily make an informed choice for themselves. So I think
for the kind of people my team supports, that's really where the challenge
lies. It's a smack bang in the middle of an opportunity and a challenge.
Yes, getting the right fit. Well let's go to Stephanie Gunn, who's very kindly stepped in
at short notice for Chris Faulkner. Welcome Stephanie, your role at NDIS is General Manager, Critical
Service Issues, which is a very important one for us to have
here today. I'm interested to hear about how discharge is changing from a patient
perspective, do you think, under the NDIS. Thanks Beverly, and hello everybody. Look I think I would
capture it in what you summarised in the very beginning,
it provides the opportunity for the very first time to have at the point of
discharge the confidence that you have the supports that you need going forward.
But it's really important that at the point of discharge that's all done and
we start right back at the very beginning at the point of admission,
understanding access and making sure. So I kind of talk about two groups of
participants, of two groups of people people who are new
who may have suffered an injury or a deterioration of an existing need, and an
existing participant. If you're new, you need to talk to the hospital immediately,
and they need to start talking and understanding what the access
requirements for the scheme are. And if you're an existing participant, let us know that you're in hospital,
let your providers know that you're in hospital
so that we can start thinking about any change in circumstance and any change in
plan you might need.
So then what opportunity does it provide us, I suppose,
and choices? Because, I guess, that whole
picture doesn't necessarily reveal itself right from the very beginning.
No, and I think this is a huge learning
opportunity, or a huge learning challenge for everybody to say, on the basis that I
now have this injury, what will my life look like going forward? What
do I need in my life? What supports do I have, existing? Can I go back home? Does my home need to be modified?
If we start planning with you, working with the hospital staff to understand those needs going forward,
what type of support do you need and make sure that we've got that planned in a
timely manner for when you're medically ready for discharge.
And is that very different now under the NDIS? That discharge point?
We have seen changes, without a doubt, the system and process
obviously, the evolution of that means that we absolutely are discharging the way
we've always discharged and to keep the system going
we've needed to do that. But in terms of the interface and when we start planning
for the NDIS or what, certainly in our organisation, I know the Austin as well,
people who are on an NDIS pathway, that is from day dot. There
is absolutely a group of people that enter the health system who we believe
or we will invest in because we believe they
absolutely should have access to the NDIS. And there is a clear-cut group of people like that.
That pathway commences from day dot.
Tom Worsnop, you're the Executive Manager of Practicing at the Summer
Foundation. In the last 18 months you've been working closely with the health
services around the country, trying to explore how they are adapting to
these changes associated with the introduction of the NDIS.
What is the overall experience and the discharge process?
In our work we've discovered there are quite different things going on. For example,
In areas where the hospital has taken on board the NDIS, they have had to do a lot of adjustments to the way in
which they can frame their conversations around disability rather than health.
I think we have to acknowledge that the NDIS has been a massive change and that the responsiveness of
the system has been relatively slow in certain places. I think the big thing is we need to make sure we cover off
how the scheme can work best in all places and make sure the people who are in the hospital system have a
good understanding of what the NDIS can bring. That has required significant rethinking at times. At the same
time, I think we need to acknowledge that we are looking to having a massively improved capacity
for the disability system to respond to people's needs. They're the sort of potential of the scheme,
to make that happen has to be communicated effectively as well.
But you're saying there's a bit of a disconnect at this point, or a bit of a lag?
I think you've got to acknowledge that some places have got on board quickly, skilled up workforces well
and other places have had a real challenge in being able to do that.
Interesting perspective, thank you. Brynn, Stephanie talked about the differences the NDIS could make at the
point of discharge, what are the shifts that you
are seeing in terms of discharge?
Yeah there's definitely a shift so and I think
it's important to be clear that when you look at before transition in 2016,
if you were were 55 years old specifically in Victoria and you suffered
an accident or injury needed support to get
home or a wheelchair, the reality is that you weren't going to get it. You
know that that's a fact. So it's, the world's changed significantly because
now people are eligible for the NDIS and they are eligible for the supports. Very
very consistently we in health, or in my health service anyway we're not
experiencing the NDIS, not funding those supports. The
individuals are getting them, and they're using them to go home.
As Tom alluded to, there are process issues on both sides. So there's the
ability for health systems - and these are very big organisations - we're
talking 8000 a personnel, all the way up to, I believe Monash has 16,000 people on
staff so these these are big systems trying to learn and change and adjust.
And also the NDIA, which is trying to do a lot more than just support the people that
we're trying to support. So it's really about trying to get both of those
systems to learn about one another, learn to speak to one another. And a gap that
currently is, is our ability to collaborate with one another. So my
vision for the future, as we learn and evolve, there are
opportunities to partner around some of these real difficult situations.
Well, Penny you of course come to us, come to this conversation with a broad range
of experience. You're a former NDIS employee, yourself a person with disability
and a disability advocate. Today I believe you're going to be
talking about a specific discharge experience that you had. So let's take a look
at the circumstances that you confronted.
I had a hospital admission through
mental health with depression and anxiety and I was in there for three
months in the middle of that my husband told me
that he wishes to leave the marriage relationship with me, we've been together
for 13 years and this was a shock to me. My husband actually provided around
three to four hours of support per day so there was a significant gap that I
was going to be experiencing coming home from hospital. So I had a support package
from NDIA and that only just barely supported me I
needed to have my informal supports at an extra high level because there wasn't
enough support in the funding packages. Certainly OT came out and did an
assessment and only gave two extra hours a week which wasn't covering my needs at
all and I felt quite overwhelmed by the fact that they'd overlooked my informal
support hours that was provided by my husband.
Penny, it's really good of you to come and share your story.
To give us a sense, before your husband left, which was a very difficult experience, I imagine emotionally
as well - practically, what kind of support was he giving you?
There were supports like personal care throughout the day, so during the day, at night and in the morning.
Also, cooking and arranging things within the kitchen where I couldn't lift heavy pots. There was also gardening
around the home and maintenance that he undertook without even a hesitation. So, all of this environment had changed
for me. So my formal supports I needed to have in place to make sure that my independent living skills were kept
in place and for me to have quality of life was essential. I required those extra three hours a day to be able to maintain
my health and wellbeing, and to do that, that was actually stopping me having being readmitted to hospital.
So when you realised, what was going through your mind? Because you were an
incredibly informed individual here, you really understood how big a difference
this was going to make to you.
Yeah, I did understand the system from the back-end but my support coordinator was away at the time.
I'd had a 3 month hospital visit and my confidence was down, but I had to work
through and figure out how I was going to get the occupational therapist out to
my temporary accommodation and how I was going to get an assessment through in
time to meet my needs. I felt that perhaps if I'd had some support at the early discharge place
I would actually have been better off.
Having gaps around my services was doing my quality life any good.
As a former NDIA employee though, you know the process.
What should have happened compared to what happened at the end of the day?
I think it's around, for me, I was a different participant where my plan was - like, it was listed as a worker.
So I was actually aliased to a different named go through a different process to the main people, who
actually took longer than the necessary process than a participant
would go through. That in itself had difficulty getting services promptly to you.
Once I was able to navigate the system, I was able to get the occupational therapy
report and get that into the planner where I was able to have extra hours added to my plan.
But to the three of you, too, I guess it shows you this is an experienced person who knows the system.
What does that tell us about what's lacking and the connection to your point Brynn,
Where it needs to happen?
The education has been tough.
It's not a criticism, it's nobody's fault, it's just something that's brand new, and something that's huge
With the NDIA came a whole new way of
understanding and naming things. And that's all been really positive.
The way in the NDIA approaches supporting individuals with
disability, and in the way they talk about it, I personally think it is great and
positive. The problem is that it was really really different. So it wasn't
like anything that any of us throughout the country had been accustomed to in
terms of how you go about getting the things you need. Again it's not a
fault-based thing. It's just going to take a long time and it's something that
I learned from meeting with lots of different health services, is that people
need the message that they need to go out and learn it, and not to wait to be told.
You mean the individual?
The individual and the services. Hospital teams and health teams. My impression is that
they need to say "right I need to learn to do this better, I need to learn more
about it" and we need to educate ourselves and go out there and do that.
We've had to create a whole bunch of new systems and
processes, that we've just had to create. A lot of it is having a guess and that's been tricky,
and again that's where that collaboration would really enhance
these experiences for people in hospitals, and check and say you know "is this what you need,
are we going about this the right way?" but I think I think
the reality at the moment now is that the NDIA's doing a lot and that's not
something that's on the table so people out there, individuals with disabilities
and anybody, you know, whether it's in health and education, or any system, my
advice would be that you just take that initiative and go out there and seek the
information as best you can, and have a crack, and try to do it better next time.
That's how we do better now.
Penny, your comment about stopping you coming back to hospital is the mantra
that a lot of organisations in Victoria are taking.
We see it as our role to invest front end because we want people who come in to our system to go back and live
in the community the way they want.
So I think the the mantra certainly from my perspective at Alfred Health is that NDIS is fantastic.
We are going through a system change and it's
huge, and we are learning and it's evolving but ultimately one of our key values in our organisation is that it's
for the good of our community
and that is what we're holding on to. So we are going through this journey with
that as our principle. You are saying that is exactly
how we want to grow the NDIS and Health relationship. I think it's really important.
I just want to make 2 very quick comments. You will have seen the work that we've done on the pathway
which acknowledges where there has been delays in making sure that we
get the right prioritisation for people needing reviews of their plans, for those
change in circumstances. Penny's was complicated because as you said that
as a previous employee, we didn't change the restricted status on her plan.
That's messy, shouldn't have happened. But more generally, the pathway
improvements about making sure that we can prioritize for unscheduled reviews
when a person has changed circumstances, good work is underway to make that work better. But
I want to reflect on the comments from the 2 health systems, where we are one
national scheme, nearly there, but we do not interface with consistent national
health systems. Every health area, every hospital is different for us. Every
capability, every level of resourcing, every process is
different in every hospital. And so, as our teams are growing and
embedding themselves in our local communities, our job as the health
system is to understand how that works and to make ourselves known to connect, to be
available, but to understand and make sure that our processes respond to all
of those different nuances across each of those different locations, has been
and will continue to be challenging, but it will get better as we become a national system.
That's a great point you make. Let's go to Rosie Moubarak who leads an
aged-care assessment team based at a Liverpool Hospital in Sydney. I've been
told that when a young person with a disability comes to you, you
take real personal care with that young person. Why is that so important to you?
I think as a leader of the aged care assessment team, I have a responsibility to make sure that
younger people who are coming through to aged care have had all their options explored and exhausted.
And I think if that was my brother, sister, cousin, would aged care be an outcome I would be happy with?
The anser is no.
I guess we understand that we have systems we have to work in. Aged care is bound by the aged care legislation
policies and guidelines but in this case we have to make sure the system works for the client.
In doing that, we have to look at each client as an individual and look at the specific needs and what
options are out there and available to them to make sure we're doing everything before we're looking at aged care as the solution.
Uhh huh. I think everyone here would concur with you,. What would it take to satisfy you that that is the only
option or the best option for that young person?
I guess my level of knowledge and understanding of the agency in the scheme as evolved over time
as an aged care expert, having an understanding
Like Steph said, what's available in our particular area when it comes to disability, what's available in the private sector
What's available through health at the local health district and
so it's often not straight as forward as saying that you've ticked all the boxes
and you can come through aged care. It's about listening to what options have been exhausted.
Listening to what the client wants, and also, just having an understanding that,
unfortunately in some circumstances aged care is the best place for some of these participants.
And making sure that if they do go into aged care, their care can be supplemented with funding from the
NDIS and their needs can still be met well.
But in a sense, for the first time, there is an option to consider many more options before aged care now?
Absolutely. We had really good outcomes and I'm very lucky to work in a heath district that do advocate for
younger people
and will look at all those options available, whether it's disability accomodation or private services
before they come to aged care. Often we know when a client is coming to the ACAT team for an assessment to go into an aged care facility,
that often everything has been explored and often it's the best outcome for the client.
Rosie, thank you. We'll chat further during the course of this hour.
Will Cooksley had an accident that has been life-changing for both him and his family.
The roles and the relationships simply changed overnight. Let's take a look at their journey.
We're a very close-knit family we were definitely close before Will's accident
but now as a result of his accident we've bonded a lot more. Will's life
beforehand he had such potential and that was obviously cut on January 2016
so we've just been working towards the last two and a half years to give him
every shot at getting back to what he was achieving before that day.
The highlight was when will started walking we'd been told that as a result of his
brain injury that was most likely not going to be an outcome for him when he
was discharged from hospital to home was a huge outcome, he's 27 like he's not
meant to be in a nursing home he's also not meant to live at home with mum and
dad. Navigating the maze of what the NDIS system was, was massive.
Lucy was just a godsend she just ploughed through all the stuff that she had to do,
the phone calls, the paperwork, just documents that she was sending in which
was sort of 21 pages worth. We've come to the outcome that we have based on our
own advocacy rather than the system. Getting him in his own apartment was
just so much more suited for more recovery for him we can see what
potential he still has for improvement. It's a scary thought to think of the
people that don't have the backup and the support that we were able to give
Will and that was a huge motivation for me to advocate for Will and to get the
right outcomes for him. They're just too good to me. I'm very happy, very happy.
Thanks girls.
The Cooksley family are with us, Luci and her Mum. Luci, lets ask you, I mean this was
such a life-changing event for your family. And you've advocated, as we saw in
that, so strongly for your brother.
How extensive has that commitment been and how hard has it been to just keep going and not ever give up?
Look, I don't think it was ever difficult to not stop. We wanted the absolute best for Will,
but I suppose it was difficult for our family because we were stuck between the DHHS and NDIS rolling out
but we were also in the position where the hospital wasn't really providing a whole lot of support
in terms of housing options, you know. They really wanted Will to go home with the family.
As a result of that we weren't getting the support that we needed for early access to the NDIS.
So, I went through the media, I also had a petition that got over 6,000 signatures to try and get someone to
advocate for us. We also had our local MP represent us in parliament. So finally we did get early access into the NDIS
but then from there I had to educate myself on what actually was the NDIS
and what did I need to do, and what did I need to ask for? What was Will eligible for?
We kind of felt like we didn't receive much support at all from our hospital in terms of options for him and they
had also grossly underestimated the amount of care that Will was going to require after discharge and,
therefore how much funding we would require. So we just felt as my sister said in the video, we reached the outcome
from our advocacy, not the system supporting us.
Do you think that it had a lot to do with the timing of the rollout? As we heard already today
because of that kind of disconnect still between the two systems?
Yeah, definitely. We can see what the NDIA is going to give Will and our family. But I think this, like you said at the
beginning, this was new to us. We woke up one day and my 27-year old brother that was a construction manager
was now permanently disabled and in a coma for 12 months and no one started talking to us until discharge, two years later.
sorry, about what our options were and that we were eligible for the NDIS. I mean, more specifically, we really
wanted the specialist disability accomodation for my brother, SDA, which we were told there was no way
we would be eligible for. And a year later, I just got told we did get it.
So that was all us, that did that.
To that point, knowing what you've learned, how different would his discharge experience have been?
I think what we wish is that or what we would see would be the best process is that someone from the NDIS
system actually comes to the rehab, or into the hospital long before any commencement of discharge planning
and educates the family. "This is what happened to your family. This is what it actually means."
Like, we didn't feel like there was a lot of acknowledgement of 'this is my brother's rest of his life'.
This was not a broken leg he's going to recover from. This is going to affect us all for the rest of his life.
Your going to have to do a plan every year. We just needed someone to come and educate us
and we really felt like the hospital we were in weren't providing the support because they had no idea either.
So there was this big gap. Brynn, let's come back to you. When you're planning a discharge for a patient with
complex support needs, what are the things that you have to consider
and some of the things we heard from Luci, how critical are they going forward?
Yes, thanks to Luci and her family for telling the story and it is the perfect highlight, and exemplifies what I said before.
There's a lot of education to do - a lot.
We are 2 years in to full rollout we're still not there yet. I think the thing that I think
that health discharge teams need to do most is build
confidence and capacity and provide ongoing
education about how different the NDIS is and that we cannot
it's nobody responsibility, or in fact right, to say 'no you're not eligible' or
'no, you don't qualify for this' other than the NDIA. And that's
a really really change for funding schemes in disability and certainly in
health. So I've seen that a lot in my team. Just getting people to open up their
thinking about the scheme and about the potential, and even if they don't know the answers
themselves, to say 'well we we need to explore this and we need to test
the system' basically. To see what's out there. And that is that's challenging.
So I think ongoing education's really driving home that this is the Health team's
responsibility to become educated about. We have real
limitations with that. So we can become educated on what's in print
you know the black and white. But when it comes to negotiating the nuances
and certainly the decision making - and SDA is a big one for that - nobody can
make that decision but but the NDIA. And so we still do need that
partnership. You know the the commentary about a greater presence, whether
it's actually in NDIA staff but a greater presence of that collaboration and health systems
between the NDIA would go a long way.
That suggestion, Luci, is spot on. We have been exploring in
another state the idea of having liaison officers located in a couple of the key
hospitals so that they do exactly that for the - they are there immediately for
the family, they explain the scheme. We know it's complicated language and it's
new so we need people to be able to say 'this is an option for you, when you're
ready, contact us and we can talk to you about it. So we'll be trialling that looking at how
it works over the next 3-4 months and looking what we might do more broadly as a result of that.
Dina, I guess a lot of people see money is the big driver but and that is obviously
critical to the experience of discharge the one other things need to
be taken into consideration?
You mean what level of package?
But also the complexities and considerations of the
health services there may need going forward.
It's very broad, we're talking about people's right to
be able to be keeping opportunity to have their basic needs
met but also actually live the life that we all expect to. I think the the dollars - I don't think
that's what drives, certainly, at discharge planning and all the forums that we
have been involved in or listened to, it's not
really about how much you get it's about what in the quality of what you're
getting and certainly at the discharge point the aim is to ensure that that
plan and the pre-planning work that is being done in the health system sets that
person up for that next 12 months. And that maybe to also have enough in built
capacity or core building for further assessment further work
particularly at the SDA level. That's certainly a big challenge for the health systems.
Capacity and demand is what's available from a service provider
perspective, from accommodation, from equipment is becoming a real challenge.
So as part of that planning process we we certainly look at what is required irrespective of
as long as it meets the the needs, the reasonable and necessary needs.
And to be honest, there hasn't been much that we have put forward, and
certainly, I know from Brynn's experience as
well, that there's been not that much that has been knocked back once
you go through the process. So the the bar's been
raised so much from what we've had before in terms of discharge planning
and what is available for people. And maybe we've actually been
conservative have to actually look at changing that philosophy around
discharge planning and making sure we were working at a high level. That comes with education,
training and evolution of us in health, as well as system.
There is that fear that there won't always be the money. Are people erring on the side of being too conservative, do you think?
I don't feel that.
My view would be, if you think about the new system, it's about a person envisaging the future and what
are the potential goals the expectations of my life after this event? And what
might it look like? We would in our planning conversations,
always encourage the assumption that you can go back home. So our starting
position will be 'what will you, what will it take, to get you back home for
that care back home to be sustainable, for you to be safe and for you to have
appropriate support from all the other systems as well, from our capacity
building and a health interface?' And then we work back from there to work out what
is reasonable and necessary for the scheme to fund what, the health system should
fund and design what's what's absolutely possible with the family.
So Penny, let's come back to you because of course there was a big gap between what you
needed and what your plan actually allowed for so that you couldn't, initially go back home. How did you navigate that?
Initially, I worked out I could go back to the farm where my Mum was. I stayed temporarily in a granny flat out there
until supports were able to be in place at my own home. which covered the 3 hours a day.
In the interim, my quality of life went downhill and I was at risk
of being readmitted but we managed to get through that and the changes were made to my plan and I'm
I can say, I'm independent at home with all the supports I require.
How much of a struggle was it to get the recognition you needed the extra help?
It was quite significant, I had to ask for a review of a reviewable decision, which is the process that you go
through if you feel that you don't have the supports you think you should have in your plan.
And with that, that was able to be put in place fairly quickly. Thankfully, I had the supports I required.
Stephanie, I think you already kind of covered this. We see the two outcomes, they weren't ideal but they
got there in the end. And you've really kind of covered it, there needs to be a greater connect, perhaps the idea
of a liaison officer or something that supports people to get the optimum outcome at the start.
I think that's right. Making sure we have early access and
that we work collaboratively with the health system to share the information and have a
shared understanding the functional assessment needs of the person
in language that works for both systems, and working with the family to ensure
that we get the plans in place in a timely manner. For the existing
participants it's about educating and encouraging people to use a plan
flexibly in the first instance with the existing funding while we review. And as
I said, we know that we have dragged our tails on getting an unscheduled reviews done in a timely manner
And we're still working very hard to address that.
One of the challenges, I know, and I'm sure a lot people in the room would echo this,
there is still a disconnect on what is Health and what is disability. And we have all tried to
define that line but we know we're talking about people, so you actually can't define it.
Thinking about the money side of things, I think we've certainly we've
experienced a lot of people have, in terms of some agencies saying 'sorry, that's health now
we don't see people under 65'. So there is a constant daily battle still between health and disability
and I don't know if any other states are doing it better than Victoria but we're
certainly trying to evolve that discussion. But that fundamentally is
something that still a bit of an elephant in the room, if you like, we are trying to work around and
to bridge those gaps, but it's certainly the
discussions and that collaboration around the persons we are talking
about, is something that I know we would welcome. And it's certainly something
that we actively are taking up at our Department of Health level to negotiate and work on that.
It is a really good point. And a very bureaucratic answer from, there is a very senior
working group across all state governments to try and land - so we started out Health on this end and
and then the NDIS on this end and we worked very rapidly to work out easily to work
out what was theirs and what ours, and we found this big chunk - because we're dealing
with people, grey in the middle. Who should fund this stuff in the middle? There has been an awful lot of work
50 or 60 conditions or needs that are being addressed in that bunch and that should be resolved very soon.
Let's go to Frank Zu. Frank, you're a support coordinator working with
people who have complex disability support needs. What are the biggest obstacles for you when you try to
achieve the best outcome for them?
For sure, sometimes the discharge process can be quite tricky and difficult purely because of the long delays
of the review process and the lack of suitable things and no place to go after hospital assistance. I
will give you two scenarios. Recently, I had a client, 37 years old and living in the hospital for three years.
Just so difficult to get him out of the hospital. Basically, he has no place for him to go. And so he had a review
4 times in the past 18 months and for various reasons we couldn't get the right plan for him. Another client
is 21 years old and because his health condition is getting worse so his placement just broke down. His parents couldn't look after him
at home, had to relinquish careened drop him to the hospital emergency department a number of times,
it is a sad story and put emotional stress on the client and parents. As the support coordinator I want to help
the people but we do a lot of paperwork, sadly. For example, the past two
weeks I completed and submitted 9 monthly report
and just spend so much time on paperwork.
I hope I can use the available time to work with clients to deal with the kind of paperwork.
Give us a sense of practically what kind of challenges people with those complex needs face.
I think the one thing, one of the clients in the crisis or emergency situation and call the NDIA and ask for a review, I understand there is a schedule.
But even with the clients in the emergency situation, still sometimes it can take not just weeks, it can take months for the plan to be reviewed.
During that time, the client is in desperate need of support and they have no other way to go. So, it means they have to either go to the hospital, to seek for help,
because the hospital system is probably the most safe place for them to stay. The family just couldn't handle them.
Rosie, lets ask you too, of course . We're going to see changes.
We heard a lot about those in terms of the NDIS and what that's
going to bring for ACAT team particularly. What opportunities do you see?
: I think opportunities to work closely with the agency and the scheme. So, there are opportunities for both
organisations to work collaboratively for what is in the best interests of the client. I think communication is the key.
So, I think Steph mentioned about having liaison officers at hospital sites and it is what we are talking about, but
the fine line between where that intervention happens and it being the right time for the family to
have the information and the right time to be making the decisions.
I see a lot of opportunities. This is still a very new system. I think we all just need to be very patient
and we need to give it some time to evolve as well. I think into the future people with disability are going to have a
far better outcome than we've seen in the last couple of years, as the program
has rolled out because we're all understanding how the system works. We're understanding what people can receive.
And we are getting an understanding that people with
disability can actually live at home. Their needs can be met with the insurance scheme, no matter how great their needs are.
If home is not the best place for them, then there are accommodation settings outside
of aged care where they can have their needs met.
Thanks. Kate and Toni Rowe, we have some footage which talks about your recent
discharge experience and we're going to come and talk to you in just a moment. But firstly, let's take a look.
There's always been Kate and I and we were sisters we were very very close we
see and speak to each other all the time and she was my best friend. In 2011 she
got diagnosed with a very large benign tumor she had surgery and radiotherapy
and she had a second operation the following year and that's what left her
with the severe brain injury. I didn't know if she'd survive and to be told by
professionals along the way and medical experts she'll never recover find a
nursing home that's willing to take her as a 29 year old I just couldn't accept
it I literally brought my sister home and taught myself how to do it I was
providing a huge amount of support to Kate unfunded. I had to resign from my
career and do some consulting work to try and get enough money to support my
family and keep us all housed and fed as soon as I went back to work in a
full-time capacity where I had to be out of the home working
she had deteriorated so rapidly I didn't know if this was just how it was going
to be and maybe I I would have to find a home for her.
Look, I think the thing that had more of an effect on me is knowing that my
sister, who, you know she's my best my best friend and I love her and I I hate
the fact that what's happened to me has had such a big effect on her 'cos she has
had to fight all the fights and and everything, so yeah. It is a serious gap
that pathway from health care over to NDIS needs a lot of work it was just
this revolving door and there's something missing there.
Toni and Kate are with us. Thank you both being here. Toni, as we heard, it was difficult for you, you had to do a lot of advocacy.
She did eventually get a suitable plan NDIS in the end. What have you learned? What can you pass on?
I have been listening to the people on the panel today and I concur with all the comments made, I especially would like to thank Brynn.
You articulate our experience perfectly.
What I learned is that to get the best outcomes we all have to work together. This is a new scheme of mammoth proportion.
Look, I work in the sector and I meet people every day. What drives me is what I've done for Kate, and we've got an
amazing outcome, NDIS is an absolute game-changer for my family. We have spent six years waiting for this. It was really hard,
it was really bumpy this year. Our pathway to NDIS, but it's worth the pain and suffering.
And that's, you know, that's where I look to, look to the future and share what works rather than pointing the finger and saying,
"This is your fault and this is what went wrong". For Kate, when I brought her home, very, very difficult to
implement the plan for a whole range of reasons. I was worried that maybe this just wasn't
going to work, maybe it was too far gone.
But as you can see, she's sitting next to me today and compared to when we had the planning session at her
hospital bed, just a phenomenal change in a very short amount of time.
That's our experience.
You can see the light at the end of the tunnel. But she wasn't an NDIS participant to start with when she first went to hospital?
No, no she wasn't. As I said in the clip, this year when I returned to full-time work, out of the home, she just nose-dived.
Pre-NDIS, this is the point we need to keep focussed on, pre-NDIS the - we just scraped together whatever support we could get our hands on.
And it was nowhere near adequate. When that informal support was taken away, i.e., me back to work, Kate just deteriorated really badly.
When Brynn was talking about hospitalisation and just the experiences from the healthcare perspective, that was what we went through this year.
So, Kate was taken to hospital via emergency vehicle. She would, without going into personal detail, her condition was so bad,
in acute events that I couldn't even get her to the car. Just when we talk about NDIS and we have to look at, we need to make it financially viable.
I know no-one has mentioned that today so far. But we're so grateful for NDIS that we will work within the principles of the NDIS.
Our goal is directed by Kate. Kate says to me, "I don't want people around me as much as I have at the moment", so that is her motivation.
Our goal is to go back into her review meeting - we got a six-month plan because it was quite significant - but
our goal is to go back into that meeting and reduce supports,
to the level, we needed the intense supports to bring her home because her state was so bad. But this is the way the scheme is supposed to work.
But there is a lot of fear out there in the sector. So, people are still grabbing what they can. I have confidence now for a better future for Kate.
In terms of that funding, that is such a critical one.
What are the challenges of it and how do you see it when it works properly?
Again, I have the privileged position of working in the sector and I just recently finished work with an intermediary.
I had the privilege of seeing thousands of plans in full and meeting participants and seeing some of the gaps
that are coming through in the planning sessions at this stage. Look, can you repeat the question? I lost track.
That's ok, it's around the funding and what worked for you in terms of that model that you really need for Kate?
Again, Kate has a complex presentation so for us what has worked is giving a combination of daily supports, like we've
got the lovely Tania sitting next to Kate and she is one of her key support workers who knows her very well.
So we've been able to use NDIS funding very flexibly. For the first time ever we have choice and control over
workers. There are different ways to use your plan that we've had access to for the first time.
But it's another area that I notice more broadly is therapists hours for people with complex disability are really vital.
That's one of the areas that I see needing a bit more work. Because I'm meeting people, I try not to compare,
because NDIS I think, is a market of one. Just because you have the same diagnosis doesn't mean you have the
same needs.
But I can't help when I'm sitting in front of someone, observing and talking to them, thinking "you don't have
the plan that you need to support what you're telling me your goals are". I think there is some more work to do.
This is a big social reform and it's going to take many years and everyone collaborating, working together,
communication, all of those things, and
educating and also, the elephant in the room for me, is still low expectations of
people with disability. And I think as a society as a whole, we've got a lot more work to do there.
I think that could be next year's panel discussion. Thank you very much Toni. Alastair McEwin you're the Disability
Discrimination Commissioner. Thank you for joining the conversation.
The NDIS is a framework that should improve, as we have been talking today, about the discharge
outcomes of people with complex needs. It's very process driven
and health workers have to try to navigate that as we heard from everybody. How do you think we should be
moving forward to bring about what we talked about with health and disability together?
Thank you Beverley. We have heard today many consistent themes such as lack of communication
between service providers, a lack of understanding of the needs of people with disability. What we need
is a person-centred approach and we need organisations talking to each other. In my many conversations with
people with disability when they navigate, for example, the health system they are often told
"it's not my responsibility", once the health issue is dealt with. We need an absolute recognition it is a collective responsibility.
With a person-centred approach, organisations can become better at understanding, not just the health issues,
but the non-health issues. What we've also seen when the NDIS provides support we can see people leading independent
lives in the community. My point is working together is essential to make sure that we fulfil the human rights of
people with disability.
What we're hearing, and the stories we've heard, and Toni made the point very well,
it is not the same outcome, for people necessarily with the same needs.
So somebody needs to be advocating for their rights. How critical is that?
Incredibly important. And what we're seeing is many people in the community don't have family or friends
that can support them or even advocate for them. I am seeing growing gaps where organisations have had their
funding cut or threat to their funding and they are unable to advocate for people with disability,
who are overwhelmed with the system that is complex and doesn't understand them.
With the NDIS being life-changing for many people, my question is why now are we threatening the existence of
advocacy organisations when it's, in my view, more critical than ever before?
Thank you so much Alastair. Penny, you are of course, now back home with the level of support that you really need
What are the things that worry you about being able to continue living successfully?
For me, my concerns and worries are that they may feel that different supports aren't required, feeling perhaps I have to justify why I need
particular supports and that there is an anxiety around "is my next plan going to include the same sorts of
supports that I've had in the previous 12 months? Are those plans and supports going to be lessened as they
get more Australia-wide in their approach to the National Disability Insurance Scheme?
So for me, I would like an understanding of consistency and understanding that supports can remain in your plan
and enable independent living and the supports that are required to be able to maximise your independence. So,
be able to do the one physiotherapy and hydrotherapy that you would put into your weekly outcomes
so then you're preventing going back into hospital.
Dina, for you, listening to the conversations today, what do you think your take-away is as the biggest thing
particularly when it comes to discharge?
I think the bar is never too high. I think that's the message. And it's been a game-changer for health
teams, without a doubt. I had a conversation this week in the mental health area, a whole change in
philosophy around that sector and getting up in the morning and getting dressed, having breakfast is not the bar we want
for people who have got a disability. That is absolutely something we need in health, to make sure we are continuing to advocate for.
Advocacy is another area that I have heard and listened to. I think I'm hoping that the years, as the years
go on, we are more sophisticated within the health system. But also that society become more
sophisticated around the system. That is really important. The education regarding the
NDIS is not just sector-driven, it actually is, it needs to be community-driven. One of the things that I've
experienced in our health network, even though I've been on this journey for 18 months,
which is very short - NDIS isn't something to someone until it's sitting in front of them. I think that's
the experience of people who are newly - who have new care needs or a life-changing event that brings them to
hospital, or their condition has deteriorated so that brings them to hospital, but that has been the
experience for the health-care teams as well. Until someone's -- until we have to
ask that question, should we be going down a pathway, it hasn't been real. Hopefully, that will change very rapidly.
I think Toni said we have changed things quite quickly. For some people, we still need to catch up for them.
But the vision in the future is the interface between the health and disability is - there is actually a good interface
and that we are advocating when we should be.
Tom, back to you. From the Summer Foundation, of course you are running this pilot for a discharge
approach. You're working with the NDIA, Barwon Health and Ballarat. What are you trying to achieve with this?
I think the point that has been made several times is there is a need for collaboration to make this work.
Steph said it beautifully, there is health on one side , there's disability on the other, and a whole lot of grey in the middle.
In the past we have had systems which have been largely supplemented through disability funding,
and that's changing. We need to make sure that that collaboration at a practical level is actually going to
be seen to be delivering too.
Let's go the Laura Shultz briefly. Of course you're the support coordinator. So you have hands on experience
with this pilot. What are the early successes and learnings, do you think?
I commenced with this pilot program approximately six months ago, working with the Summer Foundation ,
to try and bridge that gap between health and the NDIS, and the access pathway. The initial issues that were
raised were through the allied health team as to what we do. Where so we start?
Here we have a participant whose access has been met, they have obvious complex needs. We know from a
health perspective, how to get to the point of discharge, but that's not the end of someone's road. There is
There's a whole start to a new world, as Brynn was saying. This is just someone's, one person's life starting again and
having to relearn and re-navigate and shift the goal posts with what someone was looking at aiming towards.
Our initial focus was on trying to start building capacity within the allied health team and to understand and learn
first of all, the terminology. But also, practical steps on how to work towards it and include the participant in every step of the process.
To really build on that choice and control. But we've also focused on trying to get that early intervention in place
from a support coordination perspective to be able to explore options and help lessen the barriers and navigate
the whole scheme, both with complexities and the NDIS.
It seems there's ongoing communication connection which is so critical. Stephanie, I guess how do you think
the role of then of treating the discharge team then, interacts with the NDIS?
Look, I think as both team shave said, that is the crucial point and we need to be able to provide the discharge
teams with a more defined path into us as well. Just as these are forming and shaping their responses
to engaging with us, we need to be able to identify a much clearer connection. But that ongoing, early, deep
and shared collaboration about making sure we get the right supports at the right time for that person are
understood and planned, is where we need to be.
And just coming back to you finally, Toni and Kate. Your future, what does it look like for you?
What is your goal? Are you there or is it an ongoing situation for you?
Look in terms of what is Kate's goal, it is remaining living in the community and building a further path to
independence. We've been able to change accommodation. Kate lives in an independent unit at the
back of my property and it was purpose-built for a person with a disability, but that's stage one.
And what's always driven me, since the journey into the world of disability in 2012, is we don't have any family.
There is me. If something happens to
me, what happens to Kate? Yeah, everything I have done over the past six years to support my sister is about that journey.
Because a nursing home has never been the right place for her. I can now see - it takes a load off my shoulders.
Again, that's why the NDIS is absolute game-changer. Very, very difficult to navigate at this point
but I'm singing it from the ...It's fantastic. That's what it means for Kate, independence.
I think that's comforting to a lot of people whose journeys are so very difficult. Brynn, back to you - what's the gold standard after this conversation?
At this point, taking into account the junior stage everyone is at, I would like to see every member of every
health team trying their best at it not
getting intimidated by it, not saying health team trying their best at it not "oh I don't know" or "it's not my job" but
really putting in an earnest effort to say "I am going to try my best that at this time". Being
really clear with NDIS participants in hospital that I'm learning too
let's learn it together and take every single opportunity to learn and to try to do it
better next time. I think that's the gold standard for year 2.
That's great to hear. We've had heard amazing stories, very positive ones when we've had a lot of
advocacy and and we can see what the connection needs to be going forward. I know everyone
is trying to do the best job in terms of making discharges the right outcome and then the ongoing
support. Please thank all of our panel speakers today and all our audience members. Such a great discussion
to have started and to have heard your experiences, let's hand back to Paul Conroy.
Thank you, Beverley. On behalf of the Summer Foundation, thank you to everyone for your participation today.
A special thanks to our guests for sharing their experiences, thoughts
and hopes for the future at this stage under the NDIS. We want to encourage you all to keep the conversation going.
We'll have a video of today's presentation up on the website very soon. But in the meantime, we would
welcome your comments, feedback and suggestions by the social media channels.
Please use the hash tag, #Hospital2Home. Before we wrap up, I want to remind everyone the Summer
Foundation is hosting the Leaving Hospital Well Seminar in this space at 1:40 today immediately following the break.
On your way in this morning, you should have received a USB card that contains the most recent,
up-to-date planning resources by the Summer Foundation. It also contains the annual report, which
I'm proud to release today, as well as the information into the Royal Commission into Aged Care. The terms of
reference which were announced on Tuesday, presents a unique opportunity for young people facing discharge
who would previously follow an aged-care path to a more appropriate, well-supported disability pathway. We
are very pleased with the terms of reference that are broad enough to examine the scope of the pathways.
We can keep you up to date with the Royal Commission in the resources and on the website and social media. If
you haven't received a USB card, please pick one up at the Summer Foundation desk at the back of the room.
We will have a limited printed supply of the printed resources as well. That concludes our annual forum for 2018. Once again, thank you for your interest and attendance today. Thank you.
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