September 9, 2024 • 28 mins
Participants, families and providers across Australia are trying to make sense of what the latest NDIS Price Guide means for them – and this is in addition to the changes slated in the Federal Government’s Getting the NDIS Back on Track Bill.
ermha365 is right behind the #4aBetterNDIS campaign that’s in response to the latest NDIS Pricing Review.
This campaign is a joint effort of peak bodies – National Disability Services, Disability Intermediaries Australia, CEO Collab and Allied Health Professions Australia and their member organisations.
There are changes that particularly impact the NDIS support and services that the organisations of each of these Peak Bodies provide.
For us at ermha365 the biggest impact is high intensity supports for people with complex and challenging behaviours being downgraded to standard supports category.
This is a reduction in the funding available and a downgrading in recognition of the skill and experience of the workers in this area.
For this special episode we are going to hear from ermha365 CEO Karenza Louis-Smith and Melbourne mother Anne, whose adult son James is supported by ermha365 as part of his NDIS plan. He has a diagnosis of schizophrenia and experiences other psychosocial conditions. James relies on daily, intensive support for daily living, including for complex and challenging behaviours.
MORE INFO
- ermha365 response to consultation on draft lists of NDIS Supports
- Disability sector organisations raise the alarm on NDIS market failure (media release)
- 4 a Better NDIS - A campaign for a better NDIS for people with a disability through the delivery of services from a safe, quality focused and a vibrant service market, underpinned by fair and transparent pricing.
ermha365 provides mental health and disability support for people in Victoria and the Northern Territory. Find out more about our services at our website.
Helplines (Australia):
Lifeline 13 11 14
QLIFE 1800 184 527
13 YARN 13 92 76
Suicide Callback Service 1300 659 467
ermha365 acknowledges that our work in the community takes place on the Traditional Lands of many Aboriginal and Torres Strait Islander Peoples and therefore respectfully recognise their Elders, past and present, and the ongoing Custodianship of the Land and Water by all Members of these Communities.
We recognise people with lived experience who contribute to GET REAL podcast, and those who love, support and care for them. We recognise their strength, courage and unique perspective as a vital contribution so that we can learn, grow and achieve better outcomes together.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
ermha team (00:02):
Get Real is recorded on the unceded lands of the
Boon, wurrung and Wurundjeripeoples of the Kulin Nation.
We acknowledge and pay ourrespects to their elders, past
and present.
We also acknowledge that theFirst Peoples of Australia are
the first storytellers, thefirst artists and the first
creators of culture, and wecelebrate their enduring
(00:23):
connections to country,knowledge and stories.
Welcome to Get Real talkingmental health and disability
brought to you by the team atIrma 365.
Anne (00:37):
Join our hosts Emily Webb and Corenza.
ermha team (00:39):
Louis-Smith, as we have frank and fearless
conversations with specialguests about all things mental
health and complexity.
We recognise people with livedexperience of mental ill health
and disability, as well as theirfamilies and carers.
We recognise their strength,courage and unique perspective
(01:00):
as a vital contribution to thispodcast so we can learn, grow
and unique perspective as avital contribution to this
podcast so we can learn, growand achieve better outcomes
together.
Anne (01:14):
When he first came to Irma , he wouldn't go out of the door
of his house.
Now he's out every day, whichis amazing.
We would hate to go back tothat time again, where he was
left unsupported and beinglooked after by people who don't
(01:35):
really understand him or how tosupport him.
Speaker 5 (01:40):
Welcome to Get Real talking.
Mental health and disability.
I'm Emily Webb.
Participants, families andproviders across Australia are
trying to make sense of what thelatest NDIS price guide means
for them, and this is inaddition to the changes slated
in the federal government'sGetting the NDIS Back on Track
(02:02):
bill.
Getting the NDIS back on trackbill Irma 365 is right behind
the For a Better NDIS campaign.
That's in response to the latestNDIS pricing review, which came
out at the end of June thisyear.
This campaign is a joint effortof peak bodies the National
Disability Services, disabilityIntermediaries Australia, ceo,
(02:24):
colab and Allied HealthProfessions Australia and all
their member organisations.
There are changes thatparticularly impact the NDI
support and services that theorganisations of each of these
peak bodies provide.
For us at IRMA 365, the biggestimpact is high intensity
(02:45):
supports for people with complexand challenging behaviours has
been downgraded to standardsupports category.
This is a reduction in thefunding available and a
downgrading in recognition ofthe skill and experience of the
workers in this particular area.
Workers in this particular areaIRMA 365 CEO Carenza
(03:12):
Louis-Smith explains more aboutwhy providers and participants
are so concerned.
Karenza Louis-Smith (03:14):
Providers like IRMA, who specialise in
supporting the most complex andvulnerable participants, are
kind of being pushed to thelimit, and we're really worried
that participants are going tobe failed, distressed and
disadvantaged and not supported.
I guess, in the vision of theNDIS and if you think about what
kind of NDIS do we want we wanta safe, quality driven NDIS,
and that's important foreverybody.
(03:35):
I think what we're reallyworried about is these are
participants in the scheme,emily, who had high intensity
supports.
They've had them since 2018 andsuddenly their plans have been
slashed and cut overnight andtheir supports have been reduced
to standard.
So what does that mean?
It's the difference betweenhaving a specialist worker who
(03:56):
understands the participantsneeds and replacing them with a
less skilled person, andexpecting a less skilled person
to be able to support people whohave got really complex and
challenging presentations anddiagnoses.
And that's really, really hard,emily, because what it does is
it puts staff without trainingin situations of risk, but it
(04:17):
also puts participants insituations of risk with staff
that don't understand theirneeds, and I think what we're
really worried about is theseare participants who aren't
always easy to work with, andthey're not easy, because they
might have mental healthpresentations as well as you
know, disabilities.
For example, it might besupporting someone who has
(04:38):
schizophrenia, an intellectualdisability and a history of
trauma.
Now you're not going to putsomebody who's unqualified to
work with someone who has quitecomplex needs, but that's what
this change means.
And so families are concernedbecause they're worried that by
doing that, the people thatwe're supporting, without the
right supports, theircircumstances will worsen,
(05:02):
perhaps their mental health willdeteriorate, their disability
will worsen, perhaps theirmental health will deteriorate,
their disability will worsen.
And, as you can imagine,families are really really
frightened.
Emily, and as service providers,I think we're really, really
concerned.
And I think what I'm reallyworried about is that when
participants become reallyreally unwell and services can't
be provided, who's going tosupport them and what's going to
(05:24):
happen?
And from our experience, theseparticipants are likely to end
up in types of institutions thatare not suitable, and by that I
mean in locked hospital wardsas social admissions, in a
hospital where they might haveto be mechanically restrained,
ie tied to their beds, or, worstcase scenario, in prison.
(05:47):
And we know that's real andthat's true and that actually
happens.
Now, changing those supportsfor this kind of NDIS
participant frightens me.
It's an awful scenario.
And so service providers aresaying why have you done this?
It makes no sense.
Why have you done thisovernight?
Why have you done this withoutany warning?
(06:08):
Why have you done this withoutany consultation?
Why haven't you spoken toparticipants and their families
and their carers and theirsupport workers and staff that
support them?
Quality, registered providerswho provide such an important
service?
We actually want more safe,quality and skilled service
(06:29):
providers, not less.
This is what this price reviewthreatens to do.
And certainly, emma, when we'retalking to families, they're
really worried and they'resaying are you going to change
your support?
Are you going to change thesupport workers?
These support workers know myson, know my daughter and I know
that my son or daughter aresafe.
And they're safe because youunderstand what's happening and
(06:52):
going on and you can help my sonor my daughter the person that
I love day to day so that badthings don't happen to them.
And that's really, really hardto answer, emily, because the
funding isn't there to be ableto do that.
Speaker 5 (07:09):
To the general public who don't have interactions
with the NDIS.
There's a lot of thought thatit's just a big money pit and
that providers complaining aboutfunding.
Well, it's just about money.
But, corinza, can you explainwhy?
Yes, we are talking aboutpricing and funding, but what
(07:30):
does that actually mean?
Karenza Louis-Smith (07:32):
Well, it's more than just about pricing,
emily.
I think it's about the type ofNDIS that we want.
You know, and I think when wethink about people with
disabilities in an NDIS scheme,if you were to ask me, you know
just not as the CEO of Emma, notas co-host on this podcast with
you even, but you know just asa person, you know what do I
think.
I think the scheme should behere to support people who are
(07:54):
most vulnerable and whoseday-to-day functioning is most
impacted as a result of theirdisability, whether it's a
psychosocial disability, anintellectual disability or a
physical disability.
And the bit that I don't get iswe seem to understand that
really, really well.
For visible disabilities yes,karenza's got no legs.
You know she's in a wheelchair,she needs carers and support to
(08:17):
do all of these things for her,but we don't understand it for
people with invisibledisabilities, we don't
understand that this might be aperson with schizophrenia.
You know autism, a history oftrauma, whose day-to-day
functioning is completely justas hard and just as difficult as
it is for the Karenza withoutany legs in the wheelchair just
as hard.
And you know the invisibledisability.
(08:39):
Karenza needs as much support.
And this is the bit that Ithink that's really hard for
people sometimes to get tounderstand.
You may not be able to see thedisability, but the impact that
that has on somebody'sday-to-day life, quality of life
, just to live, just to live alife is why the NDIS is
life-changing.
I mean, it's an awesome scheme,it's a wonderful scheme.
(09:01):
It's changed the lives,undoubtedly, of hundreds and
hundreds and hundreds of people,and everyone should care about
the NDIS and we should allreally, really care that people
who most need what we call highintensity supports keep them.
This isn't about givingsomething extra.
This isn't about asking formore money.
(09:22):
This is about saying people withthese needs, who have had this
support, they need to keep thissupport.
This is the support that theyneed.
This isn't providers whingingand complaining for more money.
This is about why have youstripped away and taken away
this specialist support thatpeople with invisible
disabilities really, really need?
And I could fire up Emily forhours on this topic, but I do
(09:44):
think that we should hear fromAnne and her story and you know
the supports for James, becauseI think it's a really powerful
example of why this is soimportant.
Speaker 5 (09:54):
For this special campaign episode.
We're going to hear fromMelbourne mother Anne about the
family perspective of this NDISsupport.
Anne's adult son, james, hasbeen supported by Irma365 for
the past five years as part ofhis NDIS plan.
He has a diagnosis ofschizophrenia and experiences
(10:15):
other psychosocial conditions.
James relies on intensivesupport for daily living,
including for complex andchallenging behaviours.
This means James has supportworkers who are trained and
experienced in behaviour supportand who work closely with
behaviour support practitioners.
Firstly, we hear from Anneabout James' support, what
(10:40):
things were like, where they arenow and how it has changed
their lives.
Anne (10:47):
He has severe mental health issues.
He has attempted to take hislife.
He needs constant,24-hour-a-day, seven-day-a-week
care.
He now is gaining a lot ofconfidence.
He knows that he has a lot ofsupport.
He suffers a lot of confidence.
He knows that he has a lot ofsupport.
He suffers a lot of fear and byhaving the support workers
(11:11):
around him all the time, italleviates his fear.
When he first came to Irma hewouldn't go out of the door of
his house.
Now he's out every day, whichis amazing.
He has a program every day.
Well, most days he has supportworkers who have been supported
(11:36):
themselves in understanding whatJames's symptoms are and how to
handle him when his symptomsbecome very severe.
So really, for James, he feelssafer, he feels loved, he feels
part of an extended family withthe support workers and he's had
(11:57):
the opportunity to followthrough on things that he's
really wanted to do but been toofearful to do, mainly creative
stuff like music and poetry andreading.
Creative stuff like music andpoetry and reading nature walks,
things like that that reallyhelp him to get back into
(12:19):
society, into the community, andhelp him with his communication
skills with people that hemeets in everyday life.
Like you know the checkoutpeople at the supermarket, like
you know the checkout people atthe supermarket.
He's been able to get moreregularly to doctor's
appointments, to dentistappointments, because the staff
are able to take him and followthrough on that.
(12:40):
His health is so much better.
His medical team is so muchbetter, so his medication's been
reduced a lot, so he's muchclearer in his mind.
So I think it's really overallthe incredible support that he's
getting that makes him feelspecial, makes him feel
important and is always therefor him if he's struggling,
(13:03):
which he does struggle every day, sometimes for hours on end
every day.
What's very important for Jamesis to have a regular team, to
have predictability as to whatsupport workers are coming in on
what days.
So what he does have is exactlythat.
So he knows that on Monday,sunday and Monday there's a
(13:25):
particular support worker whodoes those shifts.
Tuesday there's anotherWednesday, thursday there's a
support worker that does thoseshifts.
It's predictability for Jamesand he knows that he's got a
team not just of the supportworkers, but he's got a team
that includes a psychologist, asocial worker, an art therapist,
(13:47):
a sound and music therapist,and you know, having that team
around him is just so, soimportant, and having a regular
team that is sharing the load sothey don't get burnt out is
really really important as well.
He's in a private rental at themoment, but he's been down for
(14:09):
an SDA for the last five yearsand the company that is doing
the SDA have had incredibleamount of trouble getting
builders in Victoria and gettingfinance for it.
It's been really, reallydifficult because he should have
been in there about three yearsago.
Hopefully it will start and becompleted by the end of next
(14:30):
year, but we've been told thatlike year after year, it's
really very, very frustrating.
At the moment.
He's got what he needs and thatis one person in private rental
.
There's no way in the world hecould go into a group home for
two reasons he feeds offeverybody else's energy and so
(14:52):
if he's with other people whohave mental health issues or
psychosocial issues, he wouldjust be really, really
distressed.
And then, on the other hand,the people living with him would
actually be really distressed,because when James is distressed
, he is really distressed,frustration and all of that.
So he really does need a oneperson unit with a support
(15:15):
worker.
Speaker 5 (15:17):
Anne got emotional when we asked her about the
struggle over the years to getJames the support he needs.
Anne (15:24):
For us it's been 30 years, 30 years of supporting James.
He became unwell when he was 11and he had unusual behaviours
before that.
But at 11 years of age hebecame very unwell with severe
OCD.
He then, from there, developedschizophrenia and spent a lot of
(15:48):
time at 12 years of age inhospital, which was extremely
distressing.
He was there for six months.
They couldn't work out what waswrong because they'd never seen
a child of his age with suchsevere symptoms.
They didn't even want todiagnose him, but eventually
they did, with schizophrenia.
So he has been treated for that.
(16:12):
So what it does to our family.
In fact, I just came acrosssomething I'd written about
eight years ago, before Jameswas with Irma or the other
organisation he was with priorto that, just how it was for me,
for us, and I had written pages, which I've just condensed down
(16:32):
to sort of one, of just theexhaustion.
It's just total exhaustionphysically, mentally and
emotionally, because physicallyyou're always on edge, you're
not sleeping well, you'rehypervigilant, looking out for
what you can do to helpresearching, finding doctors,
(16:57):
finding programs.
So it's physically exhausting.
It's emotionally exhaustingbecause you have a child who you
actually can't help.
There's nothing that you can do.
It's not like his leg's goingto be fixed in six months' time,
but when you've got like asocial illness, your life's like
(17:18):
a roller coaster because fromone minute to the next you just
don't know what it's going to belike.
He may be happy one minute andthen 10 minutes later be
punching holes in walls becauseof the frustration, of the
severity of the thoughts thatconsistently keep running
through his head.
So you know, emotionally,having to deal with that and see
(17:41):
your own person, your own sonor daughter, in that much
distress and not be able to doanything about it, is just
unbelievable.
And there's also justcoordinating with professionals,
professionals who just don'tget it, who are supposed to know
and be able to support you.
(18:02):
Before I came to Irma, that wasjust a constant.
I would always be trying to getyou know the professionals
talking to each other to getteam meetings going and of
course it was near impossible todo that.
And one thing with Irma isfantastic because we have team
meetings.
We have a set team for James,we get together regularly.
(18:25):
So that's taken a lot ofpressure off and me too, you
know back in those days, gettingJames to appointments all the
time.
Now I don't necessarily have todo that, because the support
staff can get him to have hiseyes tested, his hearing tested,
his teeth done, as well as hispsychiatrist, as well as his
(18:48):
psychologist, as well as all ofthose other therapists that he's
seeing.
You know, I don't have to doall that and in fact I couldn't
have done all that.
It was too much for one person.
There's my husband as well, andhe's been supportive the whole
way through, but he doesn'tthink like.
I think Most of my friends whoI've met through mental health
(19:10):
have separated or divorcedbecause, you know, it's too hard
.
It's too hard.
Speaker 5 (19:19):
The stability of his support means James has come a
long way in the past five years.
He recently travelledinterstate with support workers
to attend a family celebration.
Anne (19:30):
It was James's first trip with support workers to attend a
family celebration.
It was James's first trip withsupport workers in about four or
five years up to Brisbane.
That was for my brother's 60thand James wrote the most
beautiful poem and basically hadmy brother in tears.
You know, most people just seehis trauma and his symptoms but
(19:50):
no one ever sees that deeperpart of him and it was so lovely
for that to be able to comethrough.
You know he's come a long wayin being able to do that.
He uses with the encouragementof the workers as well, and Irma
uses a lot of his time writingand artwork and all of that, so
(20:11):
that's a great benefit.
Speaker 5 (20:14):
James's dad, john, popped into the room while Anne
was talking with us, so it was abonus to get his thoughts on
the NDIS too.
John (20:22):
Look, it seems to be immensely complex and I think
people who didn't have anadvocate would easily fall out
of it.
So you've got to have someonepursuing it for you, but if you
do, it's fantastic.
Absolutely, absolutelyworld-class, leading, I would
say.
Anne (20:43):
So what difference has it made for us as a family?
John (20:46):
Oh, immense For James.
The care that he's got becauseof the quality of the people is
what has made the difference.
You know he doesn't need anaged care worker who comes in,
ensures that he gets washed andmakes his bed.
It's a lot more than that andit would set him back five years
(21:10):
if they did that.
Anne (21:12):
Yes, he needs staff that have been educated on mental
health.
So staff with extraqualifications.
Yes, absolutely.
Listen to the families, listento the clients and know that
there is a full range ofdisability, from very intense
(21:35):
requirements down to lessintense, and the people that
need it the most well, they allneed it, but you can't take away
from the people that need itthe most.
You really can't take away fromthem, especially when they've
experienced how incrediblywonderful the support that
(21:56):
they're getting has been andwhat a huge difference it's made
to their lives and theirfamilies' lives.
It would be devastating,devastating to take any of that
care away when the NDIS is doingsuch a fabulous job in
supporting high-needs people.
Speaker 5 (22:16):
Anne and John acknowledge there are decisions
that need to be made within theNDIS, but not by reducing
crucial supports forparticipants.
John (22:26):
If they're looking to save money instead of pruning little
bits off the edge, then theyhave to get in there and get the
very clear rorting that goesright through the system, and
they all know that it's thereand, for whatever reasons, they
don't seem to act on it.
Anne (22:44):
Clear the rorting.
Get rid of the rorting, butdon't take money away from those
who desperately need it.
Speaker 5 (22:52):
Anne would like to see far more understanding about
psychosocial disability, notonly from the general public,
but even from healthprofessionals and the NDIS.
Anne (23:03):
Right from the very beginning, psychosocial wasn't
even included in the NDIS andeven now when I get stuff from
other medical things they'll saycan he walk, can he talk, can
he shower himself?
And I'll say yes, yes, yes.
Oh well, you know threequarters of the questionnaires
(23:26):
are about physical disability.
Do they ever ask can he copewhen he goes out into society?
Can he have good communicationwith people?
What are his symptoms, what arehis coping mechanisms?
What support does he need withthose?
They just don't ask anyquestions relating to
(23:49):
psychosocial.
But the NGOs initially had nounderstanding at all and I think
still does not put psychosocialon the same level as physical
or intellectual disability.
It's a massive disability.
Speaker 5 (24:07):
Anne's message to the decision-makers is clear Her
son's life is at stake if NDISpricing interferes with the
support he relies on.
Anne (24:19):
With the intensity of the support he's getting, both the
physical support of the supportworkers being there, knowing how
to deal with his condition,teaching him how to deal with it
, how to think differently.
With all the support he isgetting now, we can't see that
that suicidal tendency will cometo any awful end.
(24:42):
That was a terrible, terribletime, and we would hate to go
back to that time again where hewas left unsupported and being
looked after by people who don'treally understand him or how to
support him.
We need mental health, trained,intensive, trained support
(25:05):
workers who are paid, who arepaid the money they deserve.
I'm sure they're not even paidthe money they deserve.
Now, you know, james, if he'shaving symptoms and he's
crossing a road, he won't seethe cars coming.
All of that.
If there's a fire in the unit,he won't know what to do.
He is really very, very, veryvulnerable unless he has this
(25:29):
high intensity support.
Speaker 5 (25:31):
I have a lot of thoughts after hearing Anne and
knowing the work that we'redoing at Irma365 and also seeing
the advocacy by providers allover the country, so I wanted to
wrap up the conversation withCorenza Lewis-Smith again.
So I wanted to wrap up theconversation with Corenza
Lewis-Smith again.
Hey, corenza, I know for me,I'm not a frontline worker, but
(25:55):
I work at Irma 365 and I'mlearning so much about the NDIS
and seeing how amazing it is,and I do have a lot of thoughts
about why it is so terrible someof these things that are being
proposed, the cuts.
I don't think it's too dramaticat all to say people's lives
are on the line.
Karenza Louis-Smith (26:12):
Look, I agree, and I think when you hear
just what Anne was talkingabout and the impact that that's
having on James imaginestripping away James's
specialist staff who understandhis mental health, who
understand his disability, whoare able to support and help him
you know she's really worried.
What's going to happen to James?
I'm really worried.
What's going to happen to James.
You know, and I think this isthe piece that we should all be
(26:34):
really fired up about.
I mean, we want an NDIS that wecan all look at and go.
This is fantastic.
This is supporting people with,you know, a lot of
vulnerabilities.
You know, and I know if thatwas my son or my daughter, I
would be walking all the way toCanberra Hill.
You know, banging on theminister's door, going, what
have you done?
We should all be thinking likethat.
Speaker 5 (26:55):
I agree, and I think it's also important for people
to think that you may not accessthe NDIS right now, but you may
need to in the future andpeople that you love may need to
, and I think, once you shiftyour mindset about that, really
every Australian, everyoneliving in Australia, should be
wanting an NDIS that iswell-funded.
(27:18):
I know there's been rorting andstuff.
It's another podcast.
Karenza Louis-Smith (27:22):
Emily, we should do a podcast on that.
But absolutely we want an NDISthat's safe, quality driven and
it's important for every singleAustralian.
Speaker 5 (27:32):
Thank you to Anne and John for talking to us for this
podcast and sharing theirexperience.
To find out more about the Fora Better NDIS campaign and to
have your say, go to the website, for that's the number for
abetterndiscomau.
The details are in the shownotes for this episode.
(27:54):
You can also check out thehashtag forabetterndis on social
media.
ermha team (28:02):
You've been listening to Get Real talking
mental health and disability,brought to you by the team at
Herma 365.
Get Real is produced andpresented by Emily Webb, with
Carenza Louis-Smith and specialguests.
Thanks for listening and we'llsee you next time.
Get Real is recorded on the unceded lands of the
Boon, wurrung and Wurundjeripeoples of the Kulin Nation.
We acknowledge and pay ourrespects to their elders, past
and present.
We also acknowledge that theFirst Peoples of Australia are
the first storytellers, thefirst artists and the first
creators of culture, and wecelebrate their enduring
(00:23):
connections to country,knowledge and stories.
Welcome to Get Real talkingmental health and disability
brought to you by the team atIrma 365.
Anne (00:37):
Join our hosts Emily Webb and Corenza.
ermha team (00:39):
Louis-Smith, as we have frank and fearless
conversations with specialguests about all things mental
health and complexity.
We recognise people with livedexperience of mental ill health
and disability, as well as theirfamilies and carers.
We recognise their strength,courage and unique perspective
(01:00):
as a vital contribution to thispodcast so we can learn, grow
and unique perspective as avital contribution to this
podcast so we can learn, growand achieve better outcomes
together.
Anne (01:14):
When he first came to Irma , he wouldn't go out of the door
of his house.
Now he's out every day, whichis amazing.
We would hate to go back tothat time again, where he was
left unsupported and beinglooked after by people who don't
(01:35):
really understand him or how tosupport him.
Speaker 5 (01:40):
Welcome to Get Real talking.
Mental health and disability.
I'm Emily Webb.
Participants, families andproviders across Australia are
trying to make sense of what thelatest NDIS price guide means
for them, and this is inaddition to the changes slated
in the federal government'sGetting the NDIS Back on Track
(02:02):
bill.
Getting the NDIS back on trackbill Irma 365 is right behind
the For a Better NDIS campaign.
That's in response to the latestNDIS pricing review, which came
out at the end of June thisyear.
This campaign is a joint effortof peak bodies the National
Disability Services, disabilityIntermediaries Australia, ceo,
(02:24):
colab and Allied HealthProfessions Australia and all
their member organisations.
There are changes thatparticularly impact the NDI
support and services that theorganisations of each of these
peak bodies provide.
For us at IRMA 365, the biggestimpact is high intensity
(02:45):
supports for people with complexand challenging behaviours has
been downgraded to standardsupports category.
This is a reduction in thefunding available and a
downgrading in recognition ofthe skill and experience of the
workers in this particular area.
Workers in this particular areaIRMA 365 CEO Carenza
(03:12):
Louis-Smith explains more aboutwhy providers and participants
are so concerned.
Karenza Louis-Smith (03:14):
Providers like IRMA, who specialise in
supporting the most complex andvulnerable participants, are
kind of being pushed to thelimit, and we're really worried
that participants are going tobe failed, distressed and
disadvantaged and not supported.
I guess, in the vision of theNDIS and if you think about what
kind of NDIS do we want we wanta safe, quality driven NDIS,
and that's important foreverybody.
(03:35):
I think what we're reallyworried about is these are
participants in the scheme,emily, who had high intensity
supports.
They've had them since 2018 andsuddenly their plans have been
slashed and cut overnight andtheir supports have been reduced
to standard.
So what does that mean?
It's the difference betweenhaving a specialist worker who
(03:56):
understands the participantsneeds and replacing them with a
less skilled person, andexpecting a less skilled person
to be able to support people whohave got really complex and
challenging presentations anddiagnoses.
And that's really, really hard,emily, because what it does is
it puts staff without trainingin situations of risk, but it
(04:17):
also puts participants insituations of risk with staff
that don't understand theirneeds, and I think what we're
really worried about is theseare participants who aren't
always easy to work with, andthey're not easy, because they
might have mental healthpresentations as well as you
know, disabilities.
For example, it might besupporting someone who has
(04:38):
schizophrenia, an intellectualdisability and a history of
trauma.
Now you're not going to putsomebody who's unqualified to
work with someone who has quitecomplex needs, but that's what
this change means.
And so families are concernedbecause they're worried that by
doing that, the people thatwe're supporting, without the
right supports, theircircumstances will worsen,
(05:02):
perhaps their mental health willdeteriorate, their disability
will worsen, perhaps theirmental health will deteriorate,
their disability will worsen.
And, as you can imagine,families are really really
frightened.
Emily, and as service providers,I think we're really, really
concerned.
And I think what I'm reallyworried about is that when
participants become reallyreally unwell and services can't
be provided, who's going tosupport them and what's going to
(05:24):
happen?
And from our experience, theseparticipants are likely to end
up in types of institutions thatare not suitable, and by that I
mean in locked hospital wardsas social admissions, in a
hospital where they might haveto be mechanically restrained,
ie tied to their beds, or, worstcase scenario, in prison.
(05:47):
And we know that's real andthat's true and that actually
happens.
Now, changing those supportsfor this kind of NDIS
participant frightens me.
It's an awful scenario.
And so service providers aresaying why have you done this?
It makes no sense.
Why have you done thisovernight?
Why have you done this withoutany warning?
(06:08):
Why have you done this withoutany consultation?
Why haven't you spoken toparticipants and their families
and their carers and theirsupport workers and staff that
support them?
Quality, registered providerswho provide such an important
service?
We actually want more safe,quality and skilled service
(06:29):
providers, not less.
This is what this price reviewthreatens to do.
And certainly, emma, when we'retalking to families, they're
really worried and they'resaying are you going to change
your support?
Are you going to change thesupport workers?
These support workers know myson, know my daughter and I know
that my son or daughter aresafe.
And they're safe because youunderstand what's happening and
(06:52):
going on and you can help my sonor my daughter the person that
I love day to day so that badthings don't happen to them.
And that's really, really hardto answer, emily, because the
funding isn't there to be ableto do that.
Speaker 5 (07:09):
To the general public who don't have interactions
with the NDIS.
There's a lot of thought thatit's just a big money pit and
that providers complaining aboutfunding.
Well, it's just about money.
But, corinza, can you explainwhy?
Yes, we are talking aboutpricing and funding, but what
(07:30):
does that actually mean?
Karenza Louis-Smith (07:32):
Well, it's more than just about pricing,
emily.
I think it's about the type ofNDIS that we want.
You know, and I think when wethink about people with
disabilities in an NDIS scheme,if you were to ask me, you know
just not as the CEO of Emma, notas co-host on this podcast with
you even, but you know just asa person, you know what do I
think.
I think the scheme should behere to support people who are
(07:54):
most vulnerable and whoseday-to-day functioning is most
impacted as a result of theirdisability, whether it's a
psychosocial disability, anintellectual disability or a
physical disability.
And the bit that I don't get iswe seem to understand that
really, really well.
For visible disabilities yes,karenza's got no legs.
You know she's in a wheelchair,she needs carers and support to
(08:17):
do all of these things for her,but we don't understand it for
people with invisibledisabilities, we don't
understand that this might be aperson with schizophrenia.
You know autism, a history oftrauma, whose day-to-day
functioning is completely justas hard and just as difficult as
it is for the Karenza withoutany legs in the wheelchair just
as hard.
And you know the invisibledisability.
(08:39):
Karenza needs as much support.
And this is the bit that Ithink that's really hard for
people sometimes to get tounderstand.
You may not be able to see thedisability, but the impact that
that has on somebody'sday-to-day life, quality of life
, just to live, just to live alife is why the NDIS is
life-changing.
I mean, it's an awesome scheme,it's a wonderful scheme.
(09:01):
It's changed the lives,undoubtedly, of hundreds and
hundreds and hundreds of people,and everyone should care about
the NDIS and we should allreally, really care that people
who most need what we call highintensity supports keep them.
This isn't about givingsomething extra.
This isn't about asking formore money.
(09:22):
This is about saying people withthese needs, who have had this
support, they need to keep thissupport.
This is the support that theyneed.
This isn't providers whingingand complaining for more money.
This is about why have youstripped away and taken away
this specialist support thatpeople with invisible
disabilities really, really need?
And I could fire up Emily forhours on this topic, but I do
(09:44):
think that we should hear fromAnne and her story and you know
the supports for James, becauseI think it's a really powerful
example of why this is soimportant.
Speaker 5 (09:54):
For this special campaign episode.
We're going to hear fromMelbourne mother Anne about the
family perspective of this NDISsupport.
Anne's adult son, james, hasbeen supported by Irma365 for
the past five years as part ofhis NDIS plan.
He has a diagnosis ofschizophrenia and experiences
(10:15):
other psychosocial conditions.
James relies on intensivesupport for daily living,
including for complex andchallenging behaviours.
This means James has supportworkers who are trained and
experienced in behaviour supportand who work closely with
behaviour support practitioners.
Firstly, we hear from Anneabout James' support, what
(10:40):
things were like, where they arenow and how it has changed
their lives.
Anne (10:47):
He has severe mental health issues.
He has attempted to take hislife.
He needs constant,24-hour-a-day, seven-day-a-week
care.
He now is gaining a lot ofconfidence.
He knows that he has a lot ofsupport.
He suffers a lot of confidence.
He knows that he has a lot ofsupport.
He suffers a lot of fear and byhaving the support workers
(11:11):
around him all the time, italleviates his fear.
When he first came to Irma hewouldn't go out of the door of
his house.
Now he's out every day, whichis amazing.
He has a program every day.
Well, most days he has supportworkers who have been supported
(11:36):
themselves in understanding whatJames's symptoms are and how to
handle him when his symptomsbecome very severe.
So really, for James, he feelssafer, he feels loved, he feels
part of an extended family withthe support workers and he's had
(11:57):
the opportunity to followthrough on things that he's
really wanted to do but been toofearful to do, mainly creative
stuff like music and poetry andreading.
Creative stuff like music andpoetry and reading nature walks,
things like that that reallyhelp him to get back into
(12:19):
society, into the community, andhelp him with his communication
skills with people that hemeets in everyday life.
Like you know the checkoutpeople at the supermarket, like
you know the checkout people atthe supermarket.
He's been able to get moreregularly to doctor's
appointments, to dentistappointments, because the staff
are able to take him and followthrough on that.
(12:40):
His health is so much better.
His medical team is so muchbetter, so his medication's been
reduced a lot, so he's muchclearer in his mind.
So I think it's really overallthe incredible support that he's
getting that makes him feelspecial, makes him feel
important and is always therefor him if he's struggling,
(13:03):
which he does struggle every day, sometimes for hours on end
every day.
What's very important for Jamesis to have a regular team, to
have predictability as to whatsupport workers are coming in on
what days.
So what he does have is exactlythat.
So he knows that on Monday,sunday and Monday there's a
(13:25):
particular support worker whodoes those shifts.
Tuesday there's anotherWednesday, thursday there's a
support worker that does thoseshifts.
It's predictability for Jamesand he knows that he's got a
team not just of the supportworkers, but he's got a team
that includes a psychologist, asocial worker, an art therapist,
(13:47):
a sound and music therapist,and you know, having that team
around him is just so, soimportant, and having a regular
team that is sharing the load sothey don't get burnt out is
really really important as well.
He's in a private rental at themoment, but he's been down for
(14:09):
an SDA for the last five yearsand the company that is doing
the SDA have had incredibleamount of trouble getting
builders in Victoria and gettingfinance for it.
It's been really, reallydifficult because he should have
been in there about three yearsago.
Hopefully it will start and becompleted by the end of next
(14:30):
year, but we've been told thatlike year after year, it's
really very, very frustrating.
At the moment.
He's got what he needs and thatis one person in private rental
.
There's no way in the world hecould go into a group home for
two reasons he feeds offeverybody else's energy and so
(14:52):
if he's with other people whohave mental health issues or
psychosocial issues, he wouldjust be really, really
distressed.
And then, on the other hand,the people living with him would
actually be really distressed,because when James is distressed
, he is really distressed,frustration and all of that.
So he really does need a oneperson unit with a support
(15:15):
worker.
Speaker 5 (15:17):
Anne got emotional when we asked her about the
struggle over the years to getJames the support he needs.
Anne (15:24):
For us it's been 30 years, 30 years of supporting James.
He became unwell when he was 11and he had unusual behaviours
before that.
But at 11 years of age hebecame very unwell with severe
OCD.
He then, from there, developedschizophrenia and spent a lot of
(15:48):
time at 12 years of age inhospital, which was extremely
distressing.
He was there for six months.
They couldn't work out what waswrong because they'd never seen
a child of his age with suchsevere symptoms.
They didn't even want todiagnose him, but eventually
they did, with schizophrenia.
So he has been treated for that.
(16:12):
So what it does to our family.
In fact, I just came acrosssomething I'd written about
eight years ago, before Jameswas with Irma or the other
organisation he was with priorto that, just how it was for me,
for us, and I had written pages, which I've just condensed down
(16:32):
to sort of one, of just theexhaustion.
It's just total exhaustionphysically, mentally and
emotionally, because physicallyyou're always on edge, you're
not sleeping well, you'rehypervigilant, looking out for
what you can do to helpresearching, finding doctors,
(16:57):
finding programs.
So it's physically exhausting.
It's emotionally exhaustingbecause you have a child who you
actually can't help.
There's nothing that you can do.
It's not like his leg's goingto be fixed in six months' time,
but when you've got like asocial illness, your life's like
(17:18):
a roller coaster because fromone minute to the next you just
don't know what it's going to belike.
He may be happy one minute andthen 10 minutes later be
punching holes in walls becauseof the frustration, of the
severity of the thoughts thatconsistently keep running
through his head.
So you know, emotionally,having to deal with that and see
(17:41):
your own person, your own sonor daughter, in that much
distress and not be able to doanything about it, is just
unbelievable.
And there's also justcoordinating with professionals,
professionals who just don'tget it, who are supposed to know
and be able to support you.
(18:02):
Before I came to Irma, that wasjust a constant.
I would always be trying to getyou know the professionals
talking to each other to getteam meetings going and of
course it was near impossible todo that.
And one thing with Irma isfantastic because we have team
meetings.
We have a set team for James,we get together regularly.
(18:25):
So that's taken a lot ofpressure off and me too, you
know back in those days, gettingJames to appointments all the
time.
Now I don't necessarily have todo that, because the support
staff can get him to have hiseyes tested, his hearing tested,
his teeth done, as well as hispsychiatrist, as well as his
(18:48):
psychologist, as well as all ofthose other therapists that he's
seeing.
You know, I don't have to doall that and in fact I couldn't
have done all that.
It was too much for one person.
There's my husband as well, andhe's been supportive the whole
way through, but he doesn'tthink like.
I think Most of my friends whoI've met through mental health
(19:10):
have separated or divorcedbecause, you know, it's too hard
.
It's too hard.
Speaker 5 (19:19):
The stability of his support means James has come a
long way in the past five years.
He recently travelledinterstate with support workers
to attend a family celebration.
Anne (19:30):
It was James's first trip with support workers to attend a
family celebration.
It was James's first trip withsupport workers in about four or
five years up to Brisbane.
That was for my brother's 60thand James wrote the most
beautiful poem and basically hadmy brother in tears.
You know, most people just seehis trauma and his symptoms but
(19:50):
no one ever sees that deeperpart of him and it was so lovely
for that to be able to comethrough.
You know he's come a long wayin being able to do that.
He uses with the encouragementof the workers as well, and Irma
uses a lot of his time writingand artwork and all of that, so
(20:11):
that's a great benefit.
Speaker 5 (20:14):
James's dad, john, popped into the room while Anne
was talking with us, so it was abonus to get his thoughts on
the NDIS too.
John (20:22):
Look, it seems to be immensely complex and I think
people who didn't have anadvocate would easily fall out
of it.
So you've got to have someonepursuing it for you, but if you
do, it's fantastic.
Absolutely, absolutelyworld-class, leading, I would
say.
Anne (20:43):
So what difference has it made for us as a family?
John (20:46):
Oh, immense For James.
The care that he's got becauseof the quality of the people is
what has made the difference.
You know he doesn't need anaged care worker who comes in,
ensures that he gets washed andmakes his bed.
It's a lot more than that andit would set him back five years
(21:10):
if they did that.
Anne (21:12):
Yes, he needs staff that have been educated on mental
health.
So staff with extraqualifications.
Yes, absolutely.
Listen to the families, listento the clients and know that
there is a full range ofdisability, from very intense
(21:35):
requirements down to lessintense, and the people that
need it the most well, they allneed it, but you can't take away
from the people that need itthe most.
You really can't take away fromthem, especially when they've
experienced how incrediblywonderful the support that
(21:56):
they're getting has been andwhat a huge difference it's made
to their lives and theirfamilies' lives.
It would be devastating,devastating to take any of that
care away when the NDIS is doingsuch a fabulous job in
supporting high-needs people.
Speaker 5 (22:16):
Anne and John acknowledge there are decisions
that need to be made within theNDIS, but not by reducing
crucial supports forparticipants.
John (22:26):
If they're looking to save money instead of pruning little
bits off the edge, then theyhave to get in there and get the
very clear rorting that goesright through the system, and
they all know that it's thereand, for whatever reasons, they
don't seem to act on it.
Anne (22:44):
Clear the rorting.
Get rid of the rorting, butdon't take money away from those
who desperately need it.
Speaker 5 (22:52):
Anne would like to see far more understanding about
psychosocial disability, notonly from the general public,
but even from healthprofessionals and the NDIS.
Anne (23:03):
Right from the very beginning, psychosocial wasn't
even included in the NDIS andeven now when I get stuff from
other medical things they'll saycan he walk, can he talk, can
he shower himself?
And I'll say yes, yes, yes.
Oh well, you know threequarters of the questionnaires
(23:26):
are about physical disability.
Do they ever ask can he copewhen he goes out into society?
Can he have good communicationwith people?
What are his symptoms, what arehis coping mechanisms?
What support does he need withthose?
They just don't ask anyquestions relating to
(23:49):
psychosocial.
But the NGOs initially had nounderstanding at all and I think
still does not put psychosocialon the same level as physical
or intellectual disability.
It's a massive disability.
Speaker 5 (24:07):
Anne's message to the decision-makers is clear Her
son's life is at stake if NDISpricing interferes with the
support he relies on.
Anne (24:19):
With the intensity of the support he's getting, both the
physical support of the supportworkers being there, knowing how
to deal with his condition,teaching him how to deal with it
, how to think differently.
With all the support he isgetting now, we can't see that
that suicidal tendency will cometo any awful end.
(24:42):
That was a terrible, terribletime, and we would hate to go
back to that time again where hewas left unsupported and being
looked after by people who don'treally understand him or how to
support him.
We need mental health, trained,intensive, trained support
(25:05):
workers who are paid, who arepaid the money they deserve.
I'm sure they're not even paidthe money they deserve.
Now, you know, james, if he'shaving symptoms and he's
crossing a road, he won't seethe cars coming.
All of that.
If there's a fire in the unit,he won't know what to do.
He is really very, very, veryvulnerable unless he has this
(25:29):
high intensity support.
Speaker 5 (25:31):
I have a lot of thoughts after hearing Anne and
knowing the work that we'redoing at Irma365 and also seeing
the advocacy by providers allover the country, so I wanted to
wrap up the conversation withCorenza Lewis-Smith again.
So I wanted to wrap up theconversation with Corenza
Lewis-Smith again.
Hey, corenza, I know for me,I'm not a frontline worker, but
(25:55):
I work at Irma 365 and I'mlearning so much about the NDIS
and seeing how amazing it is,and I do have a lot of thoughts
about why it is so terrible someof these things that are being
proposed, the cuts.
I don't think it's too dramaticat all to say people's lives
are on the line.
Karenza Louis-Smith (26:12):
Look, I agree, and I think when you hear
just what Anne was talkingabout and the impact that that's
having on James imaginestripping away James's
specialist staff who understandhis mental health, who
understand his disability, whoare able to support and help him
you know she's really worried.
What's going to happen to James?
I'm really worried.
What's going to happen to James.
You know, and I think this isthe piece that we should all be
(26:34):
really fired up about.
I mean, we want an NDIS that wecan all look at and go.
This is fantastic.
This is supporting people with,you know, a lot of
vulnerabilities.
You know, and I know if thatwas my son or my daughter, I
would be walking all the way toCanberra Hill.
You know, banging on theminister's door, going, what
have you done?
We should all be thinking likethat.
Speaker 5 (26:55):
I agree, and I think it's also important for people
to think that you may not accessthe NDIS right now, but you may
need to in the future andpeople that you love may need to
, and I think, once you shiftyour mindset about that, really
every Australian, everyoneliving in Australia, should be
wanting an NDIS that iswell-funded.
(27:18):
I know there's been rorting andstuff.
It's another podcast.
Karenza Louis-Smith (27:22):
Emily, we should do a podcast on that.
But absolutely we want an NDISthat's safe, quality driven and
it's important for every singleAustralian.
Speaker 5 (27:32):
Thank you to Anne and John for talking to us for this
podcast and sharing theirexperience.
To find out more about the Fora Better NDIS campaign and to
have your say, go to the website, for that's the number for
abetterndiscomau.
The details are in the shownotes for this episode.
(27:54):
You can also check out thehashtag forabetterndis on social
media.
ermha team (28:02):
You've been listening to Get Real talking
mental health and disability,brought to you by the team at
Herma 365.
Get Real is produced andpresented by Emily Webb, with
Carenza Louis-Smith and specialguests.
Thanks for listening and we'llsee you next time.
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