Joint Standing Committee on the NDIS
Aftercare Submission
March 2017
‘Flying the Flags of Wellbeing in Brisbane’ Participants shared their wellbeing tips and encouraged people to be mindful of the five ways to wellbeing: connect, be active, take notice, keep learning and give.
Gillian McFee
Acting CEO, Aftercare
Overview
As Australia’s oldest provider of mental health support services, Aftercare has been continuously providing support for those with psychosocial disabilities since 1907. In considering our response to your terms of reference, we have documented our client’s experiences of engaging the NDIS processes and structures. We have addressed your terms of reference individually below, but would like to make the following systemic level observations of relevance to the Review:
At a systemic level, the change in funding arrangements from block funded services to individually funded packages marks a powerful shift towards the creation of a person-centred model of support, which can only benefit those with a mental illness. The establishment of the NDIS however, and the way in which the roll-out has been managed, has had some significant immediate consequences for the service economy.
These include:
The creation of gaps in service availability Reducing the skilled workforce, especially in regional locations Inadequate information from a service user perspective reduces informed choice
Gaps in service availability
The redistribution of funding away from existing PIR and PHaMs programs and into the funding pool for packages was based on the assumption that all of those currently receiving service supports would continue to do so under the new arrangements.
This is not the case. Additionally, in some communities the withdrawal of funds from community based support services will mean that many who currently access psychosocial supports will no longer have access to a service, even though their need for support remains.
While the government has committed that no-one will be worse off, it remains unclear as to how alternative services will be funded for those who will not be eligible for NDIS assistance.
In some communities the withdrawal of block funded services will create a gap in the provision of services, especially community interaction and support services. As these are not clinical in nature, it is unlikely that the programs that might be offered in the future through primary health networks will address this need.
While the needs of some individuals may be better addressed under the new arrangements, the needs of others and the broader needs of the community may not be so well met. In Cunnamulla, QLD for example, the interdependency of the predominantly Aboriginal community service operations supports not only the immediate participants in the PHaMs program (one of those scheduled to be abolished), but also provides the workforce and infrastructure for other community assistance including the operation of the local Meals on Wheels.
Of the current 56 participants, it is likely that only 9 will receive NDIS assistance because of the age cohort in this small remote town. The town has a fly-in GP and no other support services. Once funding for the program ceases as part of the transition, even those funded by NDIS will not be able to access support services, as it will not be viable to operate them.
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Reduction in the skilled workforce
It is a likely consequence that the skilled workforce currently providing support services in the town will leave as redeployment opportunities are limited. The overall impact on the economy of the community is likely to be affected.
In its current trajectory, the roll out of the NDIS is not taking into account the impact on the community as a whole, nor is it taking into account the preparedness of the health, housing and education sectors to adapt in pace with the roll out of the scheme.
Disconnects mean that parts of the system already under pressure and struggling to keep pace with demand are already at risk of failure.
One example of this is the shortfall in transition accommodation, where stays that are supposed to be no more than 21 days duration are now regularly more than 8-12 weeks. Irrespective of expectations that the market would step up to address this shortfall, this is not occurring in line with the active withdrawal of state operated services.
Capacity shortfalls which have existed for some time in the old funding and service provision model are being worsened by the accelerating pace of withdrawal of services from the market.
Inadequate information from a user perspective reduces informed choice The Productivity Commission Inquiry into increased competition contestability and informed user choice highlights the importance of having user-friendly information and navigation as a foundation for consumers in human services to be able to exercise informed choice (Productivity Commission 2016). The need for this information is fundamental especially where service users are vulnerable as can be the case in the NDIS. Despite attempts by the NDIS to provide information on the NDIS portal, the search function on the site and the out of date information listed is a constant source of frustration for support workers and client alike. In order to address this, Aftercare has invested in ESPYConnect, a national directory service that allows any provider to list their information in a searchable format. Clients may access the directory for free and search for and compare providers in their local area. The service also allows for providers to be contacted direct form the site and for service bookings to be made. This was a significant cost to Aftercare, but one we felt was necessary to address a major shortfall in the current environment for clients. Currently, around 1600 users a week access the site, including Local Area Coordinators, who rely on it to provide accurate provider information. We receive no financial assistance for the site. There is an opportunity for the NDIS to commission independent consumer focussed navigation support of the kind ESPYConnect offers, to improve the efficiency of LAC services and replace the moribund system currently provided through the NDIA website. The model we have established could also be commissioned to operate as a social enterprise, where the consumers of the NDIS are members.
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Terms of Reference
Further to these systemic observations, we have responded to each of the Terms of Reference below:
a) That the joint committee inquire into and report on the provision of services under the NDIS for people with psychosocial disabilities related to a mental health condition, with particular reference to:
i. the eligibility criteria for the NDIS for people with a psychosocial disability; Aftercare currently services more than 6,000 clients across NSW, QLD and VIC. We operate over 54 programs, including programs in the NSW trial sites. Our consistent experience over the full period of the operation of the scheme to date is that the eligibility criteria does not adequately consider the episodic nature of psychiatric disability/mental illness, and the focus on diagnosis rather than physical and psychosocial impact disqualifies many with a demonstrable need for assistance under the scheme.
This can create circumstances where treatment and support needs are not able to be met, leading to the worsening of the person’s illness and even the creation of new health conditions. For example, one client suffers from bouts of severe depression as the result of a brain trauma. When in the midst of an episode, he is unable to attend to basic personal hygiene, clean his house or eat properly. His initial assessment based on his diagnosis resulted in a package that entitled him to counselling, but did not take into account the impact of his condition on his general wellbeing, so he was not provided with assistance for a personal helper, cleaner etc. He is therefore at risk of disease relating to malnutrition, bedsores and skin disorders, which have resulted in extended (avoidable) hospital stays.
When the impact, rather than merely the diagnosis, is taken into account the suite of care that is identified better meets the objective of the scheme to assist people to lead their best and most productive lives. It is also more cost efficient, reducing the risk of extended and often unnecessary hospital stays.
In addition to the challenges faced with regard to eligibility definitions which privilege physical disability rather than mental illness, for many of Aftercare’s clients the experience of completing an application form is a traumatic and confusing one. The process itself is made more difficult by the limited access to information. In a recent survey of clients, less than 24% used or had access to a computer, so the online application process has been a major challenge.
The provision of online information and support documentation has proven to be a significant barrier to entry for many clients, who do not access information in this way.
“I HAVE HEARD ABOUT THE NDIS ON THE TELEVISION. MY SUPPORT WORKER IS HELPING ME
WITH MY APPLICATION. I DON’T HAVE A COMPUTER. GOING OVER STUFF FOR THE FORMS HAS
MADE ME ANXIOUS AND I DON’T KNOW HOW THIS ALL RELATES AND FITS TOGETHER FOR MY
LIFE. I’M STILL DOING THIS PROCESS AND IT IS TAKING A LONG TIME. THE NDIS MEANS I
WOULD GET ENOUGH SUPPORT TO MAKE A DIFFERENCE – TO BE ABLE TO DO MORE THINGS. MY GOAL IS TO HAVE A BETTER LIFE”.
AFTERCARE CLIENT
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b) the transition to the NDIS of all current long and short term mental health Commonwealth
Government funded services, including the Personal Helpers and Mentors services (PHaMs) and Partners in Recovery (PIR) programs, and in particular;
i. whether these services will continue to be provided for people deemed ineligible for the NDIS; There has been no consistent transition schedule from PIR or PHaMs or for the withdrawal of other state funded services. Timetables and funding withdrawal schedules have been revised in both NSW and QLD, with significant variations in the withdrawal rates for the services. In two instances, services were promised extensions of contract, but contract negotiations were not commenced or finalised until several months after the end date of the previous contract, leaving Aftercare to continue delivering services without funding for up to 3 months.
“I DON’T LIKE THIS NDIS. I AM TOO OLD FOR THIS NDIS AND IF I DON’T HAVE NDIS I CAN’T
PAY. HOW WILL I COME TO AFTERCARE? I HAVE ALWAYS COME TO AFTERCARE. WHAT WILL
HAPPEN TO ME? WHEN I CALL THE GOVERNMENT THEY CAN’T TELL ME”
AFTERCARE CLIENT (OVER 65)
While our estimates of client conversion for both PHaMS and PIR programs to NDIS are between 67% and 87% (depending on the location) these are based on the age cohort of clients and their diagnosis. Recent contracts have mandated a 90-95% conversion rate – and funds have been withdrawn accordingly. Of equal concern is the time taken before assessments are completed and plans put in place – in the case of residential clients at one facility, assessments took place in May and the plan notification did not occur until October.
For those who are not eligible there has been no clear referral pathway established to identify alternative services funding. Ad-hoc extensions and reductions in the rate at which funds are being withdrawn have provided a transient pause in the withdrawal of services. For those who are not eligible there is no clear pathway to refer them for assistance. For many clients with high complex needs and/or intellectual disability, this is a source of trauma.
For many clients, access to information regarding the NDIS has come via Centrelink. One parent carer of a client reported spending 11 hours over a period of 3 days attempting to gain information regarding what would happen to current benefits when their NDIS claim was rejected. The issue remains unresolved and she was advised to resubmit a claim to the NDIS.
c) the transition to NDIS of all current long and short term mental health State and Territory government funded services, and in particular;
i. whether these services will continue to be provided for people deemed ineligible for the NDIS; The current rate of withdrawal of state services appears to be occurring at a far greater rate than the actual roll out of the scheme. For example, one residential service in Mackay was formally closed on the basis that State funding was being withdrawn as part of the NDIS Agreement. Clients were relocated, leases terminated and staff given notice. Six weeks after closure, Aftercare was requested to re-open the service as additional funding had been found – for 12 months. Clients are now being assisted to apply for the NDIS packages. Depending on the time taken for assessments to take place and plans to be put into effect there may again be a gap in revenue to cover the operation of the service.
There is no visibility about what level of funding will be available for those who are deemed ineligible or how this will be made available. The lack of visibility about these arrangements creates considerable uncertainty for providers, who have limited cash reserves. It is also creating uncertainty for clients.
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As previously discussed, for providers operating in remote areas, this is of increasing concern, as the withdrawal of state funded service is creating a material gap in service provision that may not be recoverable.
In circumstances where the Government at State and Commonwealth level has been a major provider as well as funder, the withdrawal of services is having a profound effect on what is available in certain local markets. Within the construct of fixed pricing under the NDIS, many services which operated a range of different services are now reducing their service mix in order to focus on those services which will earn the greatest revenue. This is particularly the case with regard to coordination of supports, as an LAC service may not be viable in some communities unless linked to other service provision.
The problem is therefore two-fold:
a) wherever there is not sufficient number of NDIS recipients to allow for the operation of a viable support market, the spectrum of services is likely to shrink; and
b) where government services are withdrawn it may be that alternative providers do not emerge. Supports will not be available in the market for both those who are eligible and are not eligible for assistance. While there may be some instances where those with a disability are able to self-fund and purchase services, the majority of those with mental health related disabilities are unlikely to have sufficient income to purchase services in their own right.
d) the scope and level of funding for mental health services under the Information, Linkages and Capacity building framework;
A significant part of the current role for both PIR and PHAMs is taken up with sourcing information and supporting clients to support themselves effectively. For some clients, supporting them to build capacity so they can engage with GPs, assessors and planners is a considerable undertaking. We estimate that for most clients with complex needs (more than 65% of our client population) it takes a minimum of 100 hours of face to face time to prepare an appropriately detailed impact assessment and complete an NDIS application.
A major challenge in both this and then in the planning phase has been sourcing accurate information about suitable providers of services.
As previously mentioned, Aftercare has invested in ESPYConnect, an online, interactive national directory to meet this need. That the provision of such a service addresses a gap in the market currently, is demonstrated by the over 11,000 searches conducted on the site each month to date.
Aftercare has also invested in the Professional Practice Academy, designed to build workforce capability and capacity in the sector by developing a world first tool designed to assess the attributes of a successful mental health worker and identify learning pathways to develop the skills of mental health support workers, peer support workers, managers and mentors.
We believe these initiatives are essential to identifying and upskilling the right workers and providing the right information to support clients. This has been at significant cost to Aftercare, and is not sustainable without support or co-investment. We are currently seeking assistance within the ILC framework, but the timing for the review and award of funding is being rolled out in such a way that it is unlikely to be available soon enough to meet the existing needs in the sector.
The current rules regarding who may operate as a LAC also fail to capitalise on the already well-developed, skilled workforce through the delivery of PIR programs - focussed on the tasks of service coordination and planning. Current providers delivering these programs are ineligible to apply for tenders to operate LAC services.
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The experience, network and infrastructure built up within the delivery of PIR programs appears to be redundant under the business rules imposed by the NDIA, and is a source of considerable frustration to clients, who would prefer to have their current arrangements for coordination of supports continue, with access to other services such as living skills development and community activity delivered by the same provider.
e) the planning process for people with a psychosocial disability, and the role of primary health networks in that process;
Aftercare has established strong relationships with both the PHNs and LHDs with whom it works. One area of particular focus is the development of hospital diversion and transition programs. Aftercare has been running transition programs for 110 years, since its first operations commenced at Gladesville Hospital in 1907. On the basis of that long experience, we believe the current issues lie with the coordination of support services and the agility with which a response can be activated. To that end, we have been piloting a service in QLD “Floresco”. Floresco combines a GP service, with housing, employment and other community support services in the one location. The service also has the capacity to act as a hospital diversion support service, as well as assist PHNs to plan services for those with a psycho-social disability. The model is based on a well-established approach that exists in Europe. We are seeking to establish these centres in other locations, in collaboration with interested PHNs.
f) whether spending on services for people with a psychosocial disability is in line with projections; To date, all of the clients that have successfully converted to NDIS packages have received significant increases on the dollar value of their current levels of assistance. This may reflect the higher representation of high complex needs persons in our client groups, but it suggests that the levels of individual assistance under the scheme may well have been significantly under-estimated, and may also suggest the value for money proposition of services like PIR and PHaMS as a cost efficient mechanism for outreach and co-ordination may also have been underestimated.
IT HAS TAKEN A LONG TIME TO HAVE TO GO THROUGH ALL THE QUESTIONS AND ANSWERS.
IT’S CONFUSING AND I’M STILL WORKING ON IT
AFTERCARE CLIENT
g) the role and extent of outreach services to identify potential NDIS participants with a psychosocial disability; and
I’M REALLY LOOKING FORWARD TO THE NDIS. IF I’M ACCEPTED IT WILL IMPROVE MY LIFE. I
DON’T KNOW WHAT WILL HAPPEN TO ME IF I’M NOT
AFTERCARE CLIENT
Aftercare has established an identification process for all of its clients. Given our age cohort and service mix, we believe that around 67% of our clients within the age range will be eligible for assistance. We have developed a copyrighted assessment and preparation tool ‘The Aftercare Workbook’ to assist our clients. As indicated earlier, the time taken for assessment can be up 100 hours depending on the ability of the client to safely and consistently engage with the process. Aftercare receives no financial assistance for this process beyond the operating funding for PHaMs and PIR.
Once these programs cease, it will be an issue as to the extent to which we can assist clients in the assessment and application process.
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h) the provision, and continuation of services for NDIS participants in receipt of forensic disability services;
Aftercare provides some limited transition services for NDIS participants in receipt of forensic disability services, on a case by case basis. These services consist primarily of transition housing. We have identified a need for more defined plans for this group and clear goal planning supervision and support.
i) Any related matter In addition to the systemic issues raised at the outset of this submission there are 2 further operational issues we wish to raise with the Committee –
the lack of consistency with regard to the definitions used and the evidence base required for assessing eligibility the information for GPs regarding their role in the assessment process
A lack of consistency
Aftercare believes wholeheartedly in the diversity of our clients, however we are yet to observe that any two clients assessed by the NDIA have received the same package, even when the diagnosis and impact assessments have been highly comparable. Because our services operate across 3 states and a wide geography, we have regular experience of different information requests in different areas in relation to evidence submitted for assessment where the diagnosis and impact is the same or very similar.
Our experience is that there appears to be inconsistencies from geographical area to area as to how the assessment takes place, how long it takes and what evidence is required. There appears to be a need for more information regarding criteria and an agreed process that is applied consistently across all geographies and with regards to review of diagnosis, needs assessment and planning.
Information for GPs
On the basis of our experience in the trial site and some market sounding we conducted in 2016, Aftercare has developed a toolkit for GPs to explain their role in the application process and how best to assist their patients to access the NDIS and support them to make good planning choices. GPs are inevitably key figures in the processes of NDIS assessment and planning however the feedback we have witnessed is that to date they have received limited assistance from the NDIA in explaining the scheme or what they need to do.
In order to address this information gap and ultimately assist our clients, we have developed materials to provide them with relevant information are in the process of distributing this to NSW GP practices at Aftercare’s cost.
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Thank you for the opportunity to provide this response to the Committee. We would be happy to provide further information or discuss any of the points raised herein.
The contact officer for any queries is Gillian McFee, Acting CEO, Aftercare.
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