Chapter 7
Mental health services and the NDIS
The NDIS is
fantastic. There are plenty of people with disability who have fluctuating
needs. It is not just a mental health issue. But there is certainly a
completely different approach to assessment when you are talking about people
with an intellectual disability and people with physical disability than when
talking about people who have experience of mental illness. It is very
different.[1]
Mr
Jeffery Cheverton, Deputy Chief Executive Officer
Brisbane
North Primary Health Network
Introduction
7.1
The National Disability Insurance Scheme (NDIS) represents a fundamental
reorientation of the disability support arrangements for Australians with a
permanent and significant disability.
7.2
In one sense the underlying approach of the NDIS and the Commission's
recommendation are the same. Both envisage support services that are organised
around an individual's needs.
7.3
As discussed in Chapter 2, there is a substantial range of mental
illnesses experienced across the Australian population—ranging from mild and
moderate to severe and persistent.
7.4
For people with a permanent disability arising from a severe mental
illness, the NDIS will provide effective, person-centred non-clinical support.
In terms of overall numbers, this cohort represents a relatively small proportion
of the overall population—in the order of 60 000 Australians.
7.5
However, there are other groups whose mental illness does not fit neatly
under the NDIS because of the episodic nature of their condition.
7.6
This chapter examines these issues and focusses on the potential service
gaps which may emerge under the NDIS. The chapter also looks at the progress of
the NDIS rollout to date in the trial sites of the Hunter and Barwon areas.
Commission's view
7.7
The Commission's report identified the benefits that may flow from the
transition to the NDIS for people living with acute mental illness:
There is potential for the NDIS
model to be an empowering one for people living with severe mental illness,
because it gives a level of choice and control over funding and support which
generally is not currently available. The NDIS also has potential to enable
people to access educational, recreational and social opportunities which they
otherwise may not have.[2]
7.8
The report goes on to note the difficulties posed for mental health by
the definition of 'disability' under the NDIS Act 2013:
Under section 24 of the National Disability Insurance
Scheme Act 2013, a person with a mental health disorder meets the
disability requirements if the person has “one or more impairments attributable
to a psychiatric condition”, “the impairment or impairments are, or are likely
to be, permanent” and “the person is likely to require support under the
National Disability Insurance Scheme for the person’s lifetime” (among other
conditions). This potentially is problematic for people with severe impairment
but with episodic illness, particularly where the emphasis in mental health is
not on permanent impairment but rather on recovery and leading a contributing life.[3]
7.9
The Commission identified 'potential gaps' that could develop during the
implementation of the NDIS:
There are serious concerns about the potential gaps which
might grow under the NDIS. While those who are eligible for the top tier (Tier
3) in the system are expected to be provided with better, wrap-around supports
(in non-clinical areas), people currently supported by mental health services
may be left significantly worse off if they are not assessed as having a
‘permanent disability’ and therefore do not qualify for Tier 3. There needs to
be a significant Tier 2 package in place to ensure people are supported and do
not end up falling back on the mental health system. There also are related
issues about support for carers of people who are eligible for the NDIS.
The unanswered questions about mental health and the NDIS
cannot wait until the scheme is implemented. Re-engineering to fix the problems
will be too difficult and ineffective, and for too long, people with a mental
illness have borne the brunt of patch-up jobs. At a minimum, support for people
who currently access existing programmes must be maintained until this issue is
resolved.[4]
7.10
While positive about the impact the NDIS would have on access to support
for people with acute mental illness, the Commission ultimately recommended
that urgent clarification be provided for people with a mental illness under
the NDIS:
Urgently clarify the eligibility criteria for access to the
National Disability Insurance Scheme (NDIS) for people with disability arising
from mental illness and ensure the provision of current funding into the NDIS
allows for a significant Tier 2 system of community supports.[5]
Witness perspectives
7.11
Many witnesses welcomed the NDIS for the benefits it could provide to
individuals with severe and persistent mental illness. The comments from
witnesses echoed the findings of the Commission in calling for urgent
clarification around the implementation of the NDIS, in light of the issues
which had been raised through the NDIS trial sites.
Concerns regarding transition of
mental health programmes to NDIS
7.12
Mr David Meldrum, the Executive Director of the Mental Illness
Fellowship of Australia (MIFA) explained the extent of the 'gap' in mental
health services that may result in the transition to the NDIS:
I want to concentrate...on the several hundred thousand people
who will not be eligible for that scheme [the NDIS]...
So we are talking about well over 400,000 people—by the most
conservative estimate; some people would say the figure is something like
600,000—who access services because they need them desperately from time to
time, maybe not continuously in the way that that last 56,000 people do, but
from time to time they and their families need them desperately. They currently
access a range of clinical services, but I am particularly concentrating here
on the funding for the services in the non-clinical area—things like Partners
in Recovery, Personal Helpers and Mentors, day-to-day living programs, respite
care for carers, a whole range of programs that are funded by the Commonwealth
and a whole range of programs that are funded by every state and territory. In
the case of the Commonwealth, all of the dollars for all of the programs I just
mentioned have been rolled into the NDIS. The problem is that the majority of
the clients of all of those programs will not get a service under the NDIS...[6]
7.13
Mr Meldrum went on to state that 8000 of the 10 000 clients receiving
mental health support through MIFA members would be excluded under the NDIS:
For the people we are trying to assist—and across our MIFA
membership we are dealing with about 10,000 people at any given time—we think
about 8,000 of those 10,000 will find the door closed next 1 July... but we also
want it to be recognised that if we leave things standing as they are and we do
not find some way to maintain the current programs while implementing the NDIS
we are actually cutting several hundred thousand people out of the existing
services from next 1 July.[7]
7.14
These sentiments were echoed by Mr Ivan Frkovic, the Deputy Chief
Executive Officer of service provider Aftercare:
People are really concerned that existing services, such as
Personal Helpers and Mentors and Partners in Recovery, which are helping them
to maintain lives in the community to some level and degree, will disappear
[with the introduction of the NDIS]. Some of them will qualify for an NDIS
package... Our estimate is that probably between 70 and 80 per cent,
particularly Personal Helpers and Mentors, potentially will not qualify.[8]
7.15
Mr Frkovic told the committee that he was not confident in the NDIA's
estimation that 80 per cent of people from some PHaMs programmes would become participants
in the NDIS:
...we have something like 40 to 45 PHaMs programs across the
country, so we know that population very well. When you look at the definition
of severe and persistent mental illness and complex psychosocial disabilities
we can clearly see about 20 per cent of them fit that characteristic. That was
the way that program was designed. It was not designed to be totally that very
challenging group; it was designed to be a wider cohort. So in a sense we are
saying it should not be more than 20 per cent of them fitting. That is the way
the two programs have been designed. It is a highly contested space. A lot of
people in the National Disability Insurance Agency say, 'No, we are enrolling
up to 80 per cent of people from some PHaMs programs.' I am yet to see the
proof of that but if they were I would be alarmed because that is dramatic
mission creep. They should not be going out to people who are coping well most
of the time and giving them small packages of care. That is not what the NDIS
is about.[9]
7.16
In particular Mr Frkovic expressed concern over the number of
participants included in the NDIS trial sites, particularly the NSW Hunter
region:
All I can say is that we keep on looking at our PHaMs
programs and keep on seeing the same results. I am very up to date with what is
happening in the Hunter, which is the most advanced area in terms of
transition. I was talking to people there only last week and they said it is
something like 25 per cent at the moment of people in PHaMs programs are being
found eligible, so we know we are in the ballpark.[10]
7.17
Similarly, Mrs Narelle Hand, a Program Manager at Anglicare raised
questions about those current PHaMs programme clients being able to access help
under the NDIS:
The Personal Helpers and Mentors program [PHaMs], which I
feel is of such fantastic benefit, is a psychosocial support program. This
program is at risk of being defunded and being represented under the NDIS. Our
concern is that many people in our program may not be eligible for NDIS
packages. We have been attending all of the consultations that have been rolled
out in the Hunter region and the evidence that has come back is that at some
stage it might be that only 20 per cent of the participants we currently have
will be eligible for those packages. Our concerns are that the people who are
not eligible will fall through the gaps.[11]
Concerns relating to confusion
about the NDIS framework and funding
7.18
Ms Pamela Rutledge, the Chief Executive Officer of service provider
RichmondPRA explained that a key issue in the transition to the NDIS was the
sources of the NDIS funding:
...there is a major national systemic issue around the NDIS
which is to do with where the money is coming from in each state and territory,
so we are experiencing some unanticipated consequences of the fact that in New
South Wales the money was historically disability service money, in Victoria it
was historically mental health money and it is different in every state. It is
part of the bilateral agreements. This puts the National Disability Insurance
Agency in a very difficult position in trying to create a national framework of
eligibility and support until we can get some greater clarity around that
broader issue. The NDIS is intended to fund disability supports for people,
including people with a psychosocial disability, but it grew out of the broader
disability sector. There is a lack of definition about what is a disability
support for a person with a mental health issue compared to what has
traditionally been a health support for those people. That is the piece of work
that many of us are trying to get engagement with.[12]
7.19
A further issue for the NDIS is confusion around the NDIS framework and
what it will fund for people with mental ill-health. Ms Rutledge explained that
while the PIR programme will transition easily into the NDIS, there was
confusion around other programmes and their recipients:
I think it is sort of clouding and confusing the whole
framework about what it is that the NDIS will provide and fund for people with
a long-term severe and persistent psychosocial disability and what will remain
as a Health funded support. That is where I think we start to get into this
confusion about: where will support for all the people who do not get tier 3
packages sit? We do see that the Partners in Recovery model is really well
positioned to be reframed to go on being funded as part of the solution, not
only for supporting the tier 3 packages but also for trying to fund the level 2
and provide some block funding for ongoing support for people who do not get
their tier 3 packages, but it is a very big, clouded picture at the moment, and
there is a need for some really detailed and committed work. Many people are
involved in it, but it is really hard to see how we are going to get traction
in that space. I think the next year is really crucial about getting that
traction.[13]
7.20
Mr Jack Heath, the Chief Executive Officer of SANE Australia argued that
the NDIS had started with good intentions and the mental health sector had
embraced the policy in the hope that it would bring additional funding to support
those with mental ill-health:
In terms of the National Disability Insurance Scheme, we see
this as a highly problematic area when it comes to mental health. We started
off in a very well intentioned way. We as a sector accepted an inadequate or
improper policy framework that required people to go and plead their
disability, which is completely opposite to a recovery model. We did that
because we thought there were going to be huge amounts, billions of dollars,
that would go to 56,000 people who have got very severe needs and who we
desperately want to help. Our concern is that it is now looking like that
additional support for those people is going to come off the back of
potentially 625,000 people, as identified by the National Mental Health
Commission, who themselves have very severe mental health needs. We thought
there was going to be a huge bucket of additional funding for NDIS; that bucket
seems to be shrinking and potentially disappearing.[14]
7.21
Ms Susan King, the Director of Advocacy and Research at Anglicare Sydney
agreed with Mr Heath's comments:
We are also very concerned that with the growth of the NDIS
there may well be defunded mental health services. We want to be assured that
national systematic and adequately funded early intervention approaches remain,
because we understand the depth of the problem, particularly in the areas in
which we operate.[15]
7.22
Mr Frkovic told the committee that the uncertainty and confusion
surrounding the NDIS implementation was having consequences for those trying to
access services:
This is creating uncertainty at the moment and increasing
anxiety and levels of relapse amongst people... A lot of these programs are due
to finish in June next year: 'What happens beyond June? Where do I go?' So, it
is creating problems for the participants themselves—the individual
consumers—families and carers. They are saying, 'What do we do in this
situation?'...we have staff who are really struggling in terms of what happens to
them. When you think about it, we have 450 staff, and a lot of people are
wondering what happens beyond June next year. That whole system that is
currently working is being unravelled from a whole range of perspectives, which
I think is causing us some major challenges in terms of ongoing support for
people with mental illness, and their families.[16]
7.23
Mr Quinlan of Mental Health Australia advocated for mechanisms to be put
in place to assist users of services and programmes to navigate the transition
to NDIS, and to ensure that there was no barrier to people seeking to access
help. Mr Quinlan explained by way of example:
If Sebastian, who is on the PHaMs program at the moment,
comes into my NDIA tomorrow for assessment and is refused—I say, 'Sorry,
Sebastian; you can't have the NDIS service and, by the way, your PHaMs service
has been enrolled'—he walks out the door entitled, under the current agreement
between state and federal governments, to a continuity of service, a guarantee
of service. Governments have agreed that Sebastian is entitled, but Sebastian
walks out the door with no mechanism to tie him to that guarantee. A very
simple process, in my view, would be for the NDIA not to say, 'Good luck,
Sebastian; you're on your way,' but to say, 'Here is the state or the
Commonwealth program to which you are now entitled.' That would be a very
simple mechanism to turn that guarantee of service, which governments have
happily committed to, into some sort of concrete action on the ground, because
otherwise I fear there are going to be a lot of people falling through the
cracks.[17]
7.24
Similarly, Dr Gerard Naughtin, the Chief Executive of Mind Australia
told the committee that there was confusion amongst consumers and their
families about what the NDIS entailed for them. Dr Naughtin suggested that the
communication around the benefits of the NDIS for those with mental ill-health was
not being made clear:
...we are not at this stage really effectively marketing to
this particular group within the NDIS the real positive advantages that the
NDIS will deliver. There needs to be more thought in relation to more effective
marketing for specific population groups and particularly the groups that are
potentially eligible due to mental ill health...many people are not getting that
message—and then starting to think constructively about how they might engage
and use that.[18]
Response from the Department of Social Services
7.25
In response to these concerns about the continuity of service for
existing clients who are assessed as not NDIS eligible, Dr Nick Hartland, the Group
Manager of the National Disability Insurance Scheme within the Department of
Social Services explained that continuity of service had been a part of the
intergovernmental agreements for the NDIS trial stage. This means that:
If they [a client of a service or programme being rolled into
the NDIS] are receiving a program at the moment and their program gets rolled
into the NDIS and they are not eligible for the NDIS—or, alternatively, they do
not get the same service offer—the government is committed to providing,
outside the NDIS, continuations of service. We keep working with our colleagues
in health and watching our own programs to make sure that happens. We have not
yet heard of cases where that commitment is not being met... Also, it is
relevant that for many of these people the reason they do not get an NDIS
package is that their needs are not high enough to get into the scheme. They
might have a need but it is not the type of need that is best addressed by an
individually funded support package.[19]
7.26
In additional to the continuity of service arrangements, Dr Hartland
told the committee that the NDIS has the capacity for funding outside of the
individually funded programmes, such as PHaMs:
In addition to the continuity-of-support guarantee, as you
would be aware, there is capacity in the NDIS to fund programs outside of
individually funded programs. We have toyed with various names for this. We
have called it tier 2—which, of course, meant nothing to anyone who did not
know what tier 1 and tier 3 meant—so we have now tried to call it 'information
linkages and capacity building'. Unfortunately, that is about as opaque as tier
2. We move forward gradually into these policy areas and we hope we are making
progress, but there is capacity for the scheme to fund support for people who
do not get the individual package.[20]
7.27
Mr James Christian, the Group Manager of Disability, Employment and
Carers in the Department of Social Services told the committee that, contrary
to what other witnesses had said, the Victorian and NSW trial sites had shown
high eligibility rates:
Mr Christian: ...it may be a little more reassuring to
know that in Barwon [in Victoria] and the Hunter [in NSW] of those PHaMs
clients who are currently eligible it has been assessed that 80 per cent of
them are eligible for NDIS.
Senator McLUCAS: That is very important. So 80 per
cent are eligible from the PHaMs client group.
Mr Christian: Yes.[21]
7.28
Later Mr Christian clarified his answer by letter to the committee:
The clarification I am making is that it is "80 per cent
of PHaMs clients who have applied to access the NDIS are being assessed
as eligible". Not all PHaMs clients have made an NDIS access request.[22]
7.29
Dr Hartland could not provide a precise answer when asked about what
work had been done to identify the number of people who will fit into that Tier
2 group but not get a Tier 3 package and will need to be able to be in touch
with the NDIA or with mental health services on an ongoing basis:
...there is a group of people who have a disability and have a
support need, and then a smaller group who need an individually funded package,
and the difference between the two is about 200,000 people. Mental health would
be a part of that cohort. We have not gone much further than that at this
stage. To some degree we would be relying on the finalisation of the planning
framework to get a feel for the actual numbers outside of that, and we would
also be relying on where we think we are going to get to in relation to numbers
of people with a mental illness who have an individually funded package. The
NDIS was budgeted for on the basis that basically 57,000 to 60,000 people with
a mental illness would have an individually funded package. Whether it ends up
at that we will, of course, still have to wait and see. We are on track for
something close to that but perhaps slightly under, and I think we would need
more information from the population planning framework to then make an
assessment about the tier 2 effort. So, no: we do not have an answer. We have a
feel for it but not a precise answer. [23]
7.30
In fact the work of the Department of Social Services to determine the
number of those in Tier 2 may be made more difficult by the government's
decision not to have an eligibility criteria for Tier 2, or as it is now
called, Information, Linkages and Capacity Building (ILC). In answer to a
question on notice, the Department of Social Services advised:
Tier 2 of the National Disability Insurance Scheme (NDIS) is
now called Information, Linkages and Capacity Building (ILC), to reflect the
range of support available. ILC will not have eligibility criteria, so there is
no estimate of the number of people who will access this support. Both NDIS
participants and non-NDIS eligible people with a disability may access ILC...[24]
Committee view
7.31
The committee supports the NDIS and the benefits it can deliver for
those afflicted by severe and persistent mental illness. The committee notes
the progress of the rollout in the trial sites, and the issues which have come
to light as a result. The committee thanks witnesses for their insightful
comments about the NDIS and the implementation to date, and notes that
witnesses have been able to advise the committee based on their collective
expertise and experience.
7.32
The committee believes that the NDIS has the potential to provide
significant support to those with mental illness. Already, programmes such as
PIR and PHaMs make a large difference in the lives of those suffering from
mental illness. Part of the evidence provided by Anglicare Sydney included a
powerful example of the difference that the right support can make to someone
living with mental ill-health:
...one case study that we have permission to disclose today.
The participant is a middle-aged single lady. She was admitted to hospital with
severe depression and anxiety. Leading up to this she had lost her job. She was
not able to pay her rent. She became homeless and lived with different friends.
She was discharged from hospital and tried to find support. She found out about
our PHaMs program and referred herself. That is another benefit of this program—you
can refer yourself.
Her goals were to find stable housing and to finish her
university degree. She had been enrolled for some years but, due to her mental
health, she was unable to complete the course. During her involvement with
PHaMs, she received intensive support in managing her anxiety and depression
and addressing issues related to finances and housing. She was able to access
stable housing, which was a major breakthrough for her. Our PHaMs workers
offered weekly support and later fortnightly support in managing anxiety in
relation to social situations and the completion of her university degree.
Initially it seemed impossible for this participant to be able to complete her
degree and the PHaMs worker employed different strategies to help improve
motivation and structure so that she could finish her work.
She experienced regular major depressive episodes, including
suicidal ideation, but with the support of the PHaMs worker and her
psychiatrist she managed to get through the crisis and did not require any
hospital admissions. Her depressive episodes became less regular with time and,
in consultation with her doctor, she stopped her medication.
The participant was able to complete her university degree,
which improved her confidence, and following on from this she began to
reconnect with friends and relatives. PHaMs played a major part in supporting
this participant when she was not able to manage most aspects of her life due
to severe depression and anxiety. She has achieved a much improved quality of
life, which she deserved, and her mental health has been so much more stable.
This is just one of...thousands of stories from PHaMs that have been achieved.[25]
7.33
Examples such as this leads the committee to conclude that the impact of
programmes like PHaMs and PIR cannot be underestimated. These programmes are
the embodiment of the findings of the National Mental Health Commission's
review: that community-based, targeted, early-intervention allows an individual
to live with mental illness and actively contribute to the social and economic
life of the community. Without such programmes, the result for the individual
can be dire, and the cost to the health system can increase exponentially if
the individual is forced to access acute care or income support.
7.34
The committee believes that the testimony from witnesses and the insights
of the Commission demonstrate that there is an urgent need for the government
to clarify the support available for people with a mental illness, whether
under the NDIS or through an external programme or service. The confusion and
uncertainty needs to be alleviated as it is already impacting on both service providers
and access to services for those seeking help.
7.35
The committee urges the government to respond positively to the findings
of the Commission, and to the committee's evidence.
Recommendation 13
7.36
The committee recommends that the government immediately clarify
how Tier 2 or Information, Linkages and Capacity Building (ILC) will be
implemented and how many people it will support.
7.37
The committee recommends that the government share available
information on the workings of Tier 2 or ILC in order to quell the disquiet in
the community and ensure that individuals do not lose access to much-needed
services.
Senator Deborah O'Neill
Chair
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