Integrated Planning for People with Complex Needs Transitioning to the NDIS Final Report Sector Development Fund

Integrated Planning for People with

Complex Needs Transitioning to the NDIS

Final Report

Sector Development Fund

30 May 2018

Project Team

Jo Whitehouse, Lead, Cross Sector Reform
Deborah Farrell, Lead, Cross Sector Reform
Arlene Tan, Project Officer
Alan Blackwood, Policy Director
Dr Bronwyn Morkham, National Director

Acknowledgements

The YPINH National Alliance would like to thank the people with disabilities, their families and carers who consented to be involved in the project.

The Alliance is also grateful for the cooperation of the many health service staff who willingly engaged with the project team, shared details about their processes and worked collaboratively to develop the draft principles and other tools. These health services include St Vincent’s Hospital Melbourne (Fitzroy and Kew campuses), Alfred

Health (Caulfield Hospital), Monash Health (Dandenong Hospital and Kingston Centre),

Melbourne Health (Royal Melbourne and Parkville campuses) and Eastern Health (Peter James Centre).

Finally, the Alliance has greatly valued the collaboration offered by staff from the Victorian Department of Health and Human Services (DHHS) the Commonwealth’s Department of Social Services (DSS) and the National Disability Insurance Scheme (NDIS), who shared their expertise and opinions and helped troubleshoot issues that arose for participants involved in this project.

Introduction and Executive Summary …………………………………………………………. 4
Road Testing the Principles and Tools……………………………………………………….. 12 2.1 Principles for Collaboration………………………………………………………………… 12 2.2 Health Service Capacity Building …………………………………………………………. 19

2.2.1 Health Services Learning Needs Analysis……………………………………………… 19

2.2.2 Capacity Building Workshops for Health Services Staff………………………….. 22

2.2.3 Mentoring Clinics……………………………………………………………………………… 26 2.2.4 Collaboration by a health service and the NDIS ……………………………………. 28 2.2.5 Capacity Building Activity Outcomes …………………………………………………… 28 2.3 Case studies …………………………………………………………………………………….. 30 2.3.1 Case Study 1 – Trish’s Story ……………………………………………………………….. 31 2.3.2 Case Study 2 – Stuart’s Story ……………………………………………………………… 38 2.3.3 Case Study 3 – Linda’s Story ………………………………………………………………. 44 2.3.4 Case Study 4 – Nathan’s Story ……………………………………………………………. 51 2.3.5 Case Study Update – Benita’s Story…………………………………………………….. 58 2.3.6 Case Study Update – Andrew’s Story ………………………………………………….. 61 2.4 Escalation pathway …………………………………………………………………………… 63

RECOMMENDATIONS …………………………………………………………………………….. 68
APPENDICES …………………………………………………………………………………………. 72

Appendix 1 – NDIS Planning Preparation Tool

Appendix 2 – Guide to Residential Aged Care Fees for NDIS Participants (Draft) Appendix 3 – Principles for Collaboration -‐ Discussion Document Appendix 4 – Escalation flow chart (Draft)

Introduction and Executive Summary This is the final report of a Sector Development Fund project that examined how health services and the NDIS could deliver the integrated services that people with disability and complex health needs require. It contains

Principles for collaboration between health services and the NDIS developed by the project
Case studies of individuals the Alliance has supported in their transition to the

NDIS

An escalation pathway designed to assist health services manage delays with NDIS processes
Detail on the capacity building work the Alliance has undertaken with health services.

The report describes a range of ways in which the project has engaged differently with mainstream health services and the NDIS to ensure that participants with a high complexity of need obtain the integrated service responses they require. To do this, the project has operated at participant, service delivery and policy levels to find agreed solutions that deliver benefit to all stakeholders.

This report needs to be read in conjunction with the extensive interim report that was submitted to DHHS in February 2018.

Working Towards a Collaborative Approach

As well as offering improved funding and access to services for some people with a disability, the arrival of the NDIS has also revealed the urgent need for disability services to work more collaboratively with mainstream services such as health, housing and aged care. Although collaboration is a core element of the NDIS reform, it is one that is yet to fully materialise.

The siloed approach that has long marked the relationship between mainstream and disability programs is no longer effective for people with complex needs, particularly in the context of the NDIS as an insurance scheme that must manage long term liabilities. As well as resulting in poor outcomes for individuals, poor systemic approaches can be more costly in the long term. These siloed approaches cannot deliver the integrated service responses that individuals require to maintain their health and well being and live with confidence in the community.

Mandate

Because the Alliance had previously worked with the NDIS and health services to deliver effective working solutions, health services approached the Alliance to assist them with complex patients transitioning to the NDIS. As a result, the project had significant authority to negotiate individual responses as well as to develop shared solutions to identified gaps and barriers for this group.

In this work, the Alliance’s ability to build and maintain relationships within and across program sectors has not only been integral to the project’s success; it has been central to the project’s operation. The development and maintenance of collaborative cross-‐ program working relationships is a prerequisite for this joint work to succeed.

Service Gaps

Some of the service gaps the project has identified have been longstanding problems. They have never been effectively resolved because the disability service system – in its own efforts to deliver solutions – has inadvertently ‘papered over the cracks’ to solve short-‐term problems. Other issues have become more apparent due to legislative restrictions on the types of supports the NDIS can fund and the architecture for collaboration between the sectors does not exist.

Given that these service gaps have been identified, a new imperative now exists to bring program sectors into collaborative alignment to develop new approaches to supporting people with disability and complex needs.

Capacity Building

This report outlines a range of capacity building interventions undertaken by the project. These have involved improving health services’ understanding of the NDIS, and at the invitation of health services staff, running a series of mentoring clinics and capacity building workshops that directly address NDIS process issues.

From this work, the Project has

Uncovered a number of significant funding and service gaps that require joint attention by the NDIS, the health service concerned and state and federal policy negotiations;
Enabled a number of scheme participants to avoid placement in residential aged care by bringing health and other services into the NDIS planning process and negotiating the provision of additional supports
Fostered a genuine commitment to collaboration between involved health services and NDIS staff, scheme participants and their families.

Joint Planning

Individuals with disability and complex needs require an integrated planning and service delivery framework. At present, the scheme-‐centric nature of the NDIS planning system does not allow for collaboration with other services used by these participants. Nor can it deliver the cross-‐sector service coordination that underpins integrated service delivery.

The lack of a formal joint planning process wherein a health service can fully engage in shared planning and service delivery with the NDIS, has only made the need for this type

of response more apparent. As a result, the project has had to find ways of organising a form of collaborative planning involving multiple service systems.

In doing so, the project drew on the Alliance’s facilitation of the Younger People In Residential Aged Care (YPIRAC) Continuous Care Pilots (CCP) to model cross sector service coordination and facilitation of consumer engagement in the individual work described in the case studies. Operating in Victoria and New South Wales, the CCP pilots were included in a review of cross sector service coordination projects examined by Sydney University’s Centre for Disability Research and Policy (CDRP)1 The review found that skilled coordination at the individual, service delivery and policy levels clearly delivered efficacy and responsiveness in supporting individuals with complex needs.

By providing leadership that brought key players together from health services, the participants network and the NDIS, the project delivered a de facto joint planning approach for some of the participants it worked with. In the absence of a structured joint planning mechanism within the NDIS, the project then worked to tailor integrated service responses that enabled people to return home with the services they required. In a number of cases, negotiations with the NDIS and health services are ongoing.

As a result of this work, the project has developed a successful methodology for a joined up planning approach. This is based on locating both leadership and cross sector coordination with an independent agent or intermediary.

The NDIS and local health services both have a limited working knowledge of the operations and regulation of each other’s systems. This is a significant barrier to managing service planning and service delivery in both systems. For this reason, a skilled intermediary is essential if joint planning with these organisations is to be delivered successfully. By bringing the relevant parties to this process, the intermediary can mediate the planning negotiations and, equally as importantly, ensure that the individual and their family are well informed about the process and have input into decisions.

The current NDIS planning system has significant limitations for people with complex support needs. This is something the scheme itself has partially recognised in its recent development of a Complex Participant Pathway. While this new pathway improves the administrative capacity of the scheme to work with this group, it remains comparatively scheme-‐centric in its approach. It does not utilise such key elements of joint service planning and delivery as a partnered approach to coordinated and integrated, cross sector service responses.

While the introduction of NDIS’ new Complex Participant Pathway is an important step in the scheme’s recognition of its need to work with other systems, it does not deliver the comprehensive approach described in the project’s Principles for Collaboration.

1 Centre for Disability Research and Policy; Harnessing the Evidence: Cross Sector Service Coordination for People with

High and Complex Needs, Sydney 2014

However, the Alliance strongly believes the NDIS’ new pathway can be a catalyst for the development of effective cross sector collaboration, particularly with health services. While joint planning is a significant part of this approach, it cannot occur in isolation from joint service delivery, service review, shared program governance and protocols for joint funding.

A Partnered Approach

The project’s success has been built on a foundation that includes collaborative working arrangements with the sectors involved; and the development and maintenance of good working relationships with health services teams, NDIS regional managers and national office staff. From this foundation and the project’s now extensive work in these areas, development of a formal collaboration between the NDIS and health services is possible.

However, to deliver a fully articulated approach that has capacity to be scaled nationally, more work is needed to establish the terms of engagement between these diverse programs. Further work is also needed to identify those NDIS processes and funding rules that need adaptation if a partnered approach to the scheme’s work with health services is to be achieved.

Because the capacity for cross sector collaboration is significantly underdeveloped at this very early stage of the NDIS rollout, the project’s role has been in high demand from services, particularly in the health and aged care sectors. Given the acknowledged success of the project’s work and the need to markedly increase capacity in these areas, the project’s operations should be maintained for the entirety of the transition to full scheme.

The project’s work has also demonstrated that successfully delivering cross-‐sector collaboration and joint work occurs at the local service delivery level. Health and other community services not only make many resource and service delivery decisions at this level; health services rely on local community services networks to assist patients with social support.

Although decentralised, Australia’s health system and its local governance structures remain part of statewide jurisdictional programs. When most of the important relationships and decisions occur at a local level, negotiating with the central program has only a limited benefit. As interface work evolves, it will clearly need to extend beyond government-‐to-‐government liaison arrangements. To take account for their difference but also because they are separate corporate entities, the NDIS must be able to negotiate partnership or interface arrangements with each local health service.

A unitary national approach or a one dimensional application of the COAG Principles will thus have no capacity to deal with the unique and complex situations individuals, services and funders face. These can only be managed through negotiation and an operational approach that prioritises local agreements and protocols within a national

policy framework. Such an approach will enable the flexibility required to manage complexity and maintain system integrity.

Complexity

A working definition or common understanding of complexity with relevance to involved systems is fundamental to advancing formal collaboration arrangements between the NDIS and other programs. An enduring lack of cross sector knowledge and engagement has been a significant barrier to resolving questions of the definition of complexity, both as they apply to the individual and to the service systems involved.

In the interim project report, the Alliance included a list of factors that contribute to a definition of complexity. The interim report suggested that individuals with complex needs are commonly those who require services from multiple service programs such as health, housing and aged care, as well as disability services from the NDIS; and may live with one or more of the following: § Dual disability/co-‐morbidity § Mental health disability requiring hospitalisation § Chronic health conditions requiring regular clinical monitoring (e.g. epilepsy, chronic pain, poor skin integrity, diabetes, swallowing difficulties, cardiac function, degenerative neurological condition) § Requirements for regular hospital admission § Behaviour/communication and memory difficulties § Financial difficulties that cannot address increases in out-‐of-‐pocket costs for supports § Living in residential aged care § Undergoing a program of slow stream rehabilitation § Being a long stay hospital patient needing a comprehensive transition § Having a community support program that requires clinical supervision and training of care workers to undertake technical or rehabilitation tasks.

Alongside a need for support from multiple service systems, the list contains identifying features of individuals with disability that would indicate a level of complexity. This was a similar list to one the NDIS had developed in its “People with Complex Needs Action Plan”, released in October 2017.

In the Alliance’s discussions with health services in the second part of the project, it became apparent that it is common practice for each health discipline to have a different way of defining complexity. We also found that attempting to define complexity by focussing solely on the needs of the individual, ignored system issues that can add significant degrees of difficulty, and can even prevent the implementation of practical, person centred solutions

It is core business for service systems to manage complexity in their programs. This complexity presents at different levels and different levels of intensity. Each complex

situation will be unique, as individuals bring distinct circumstances and generally require resource intensive efforts from the systems responsible for resolving these situations. Given that complexity is a permanent feature in service systems it makes strategic sense to look at a systemic approach to dealing with volumes of unique and critical problems. The reform that is needed requires systems to not simply focus on eliminating complexity one person at a time and one system at a time, but to find ways to incorporate internal and cross-‐program methods to approach complexity at multiple levels.

Kuipers et al2 conceptualise complexity through a framework developed to understand complexity in healthcare. This framework has relevance for how the NDIS interface with health and other mainstream systems is managed and offers a useful way of understanding how to develop responses. As well as understanding the relationships between these elements, systems and services must also understand how these elements interact with an individual’s own networks. Because each individual will present a unique set of challenges, responses cannot be formulaic.

Kuipers’ framework contains three elements of complexity.

Medical complexity concerns the individual’s presenting medical condition. It focusses particularly on co-‐morbid and multi-‐morbid conditions and includes aspects of medical, treatment and health service responses.
Situational complexity concerns the ways in which an individual’s context contributes to the overall situation and includes personal factors (such as gender, culture and lifestyle); environmental factors (including physical, social, systems and other factors); and the ways in which these components participate in society, relationships, and work and influence the nature of complexity.
System complexity includes issues such as increasing service fragmentation, unsupportive funding arrangements, failure to engage individuals effectively, and health care practitioner thinking and perception, all constitute key issues impacting system complexity in this framework.

Particular and confounding challenges reside in the interplay of complex care systems when added to complex health conditions and complex individual circumstances.

To make this relevant to the NDIS, an individual’s disability and its associated impacts could be added to the situational complexity element.

The dynamic and unpredictable nature of complexity in health and community services means that a linear, ‘set and forget’ response will always be inadequate. Designing a

2 Kuipers, P., Kendall, E., Ehrlich, C., McIntyre, M., Barber, L., Amsters, D., Kendall, M., Kuipers, K. Muenchberger, H. & Brownie, S (2011). Complexity and healthcare: Health practitioner workforce, services, roles, skills and training to respond to patients with complex needs. Brisbane: Clinical Education and Training Queensland, p7

system that focuses only on reducing complexity ignores the reality of the constant interactions required to respond to the needs of individuals and to manage key system risks3.

Cross sector collaboration has been cited as an important response in dealing with complexity in service systems. In 2014, Sydney University’s Centre for Disability Research and Policy (CPRD) conducted an evidence review of cross sector service coordination for people with complex needs. This review identified the core features of cross-‐program coordination that are critical to addressing the gaps, barriers and service delivery challenges that participants, service providers and for policy makers alike have to navigate.4

As the CDRP confirmed, being able to manage issues and responses in all the systems that are supporting an individual and coordinate these responses is something that must be embraced by health programs and the NDIS.

Funding and Other Responsibilities

Intended to guide the forthcoming interactions of mainstream service programs with a nascent NDIS, the COAG’s Applied Principles were developed at a very early stage of the scheme’s conception and implementation. These principles take their authority from, and reiterate siloed service systems that have no structured mechanisms to collaborate and/or actively engage with other programs or service systems.

Yet without a more partnered approach to the service gaps and administrative problems that have become apparent with the arrival of the NDIS, the scheme – and the mainstream programs it must try to engage with – are doomed to fail the very people with disability they are committed to support.

The project is aware of intergovernmental work currently being undertaken to further define the split of funding and other responsibilities gestured to in the COAG’s Principles. We are also acutely aware that the issues that health services and NDIS planners confront, cannot be easily slotted into the neat categories the COAG’s Principles would prefer.

Unfortunately though, this is exactly what the Applied Principles will continue to deliver if partnered approaches fail to become the foundation of the NDIS’ interactions with non disability programs like health, education, aged care and justice.

Next Steps

The Alliance believes the most practical way forward in this process is for involved

3 Ibid p.11 4 Centre for Disability Research and Policy; Harnessing the Evidence: Cross Sector Service Coordination for People with High and Complex Needs, Sydney 2014, p1

government agencies to jointly commission demonstration projects that enable genuine collaboration to occur at a local level with health services. These projects will require the stewardship of a highly skilled intermediary organisation, such as the YPINH National Alliance, to deliver collaborative practice involving health services, disability providers, participants and the NDIS as funder.

To date, the COAG’s Applied Principles with their focus on hard boundaries and non-‐ negotiable delineation of funding and other responsibilities, have actively prevented development of a collaborative interface between the NDIS and health systems.

If a partnered approach to this critically important work is to be achieved, the framework outlined in the Principles for Collaboration must be incorporated into the Applied Principles so that a planning and funding methodology that involves shared decision making, data collection and reporting systems, can be used by the NDIS and health services.

Most importantly perhaps, this methodology must incorporate capacity for the NDIS to negotiate funding and service plans with local health services for individual participants.

Road Testing the Principles and Tools In the second phase of the project, the Alliance worked towards operationalising the draft principles of collaboration. A practical understanding of ‘complexity’ and how it relates to the needs of individuals with a disability was developed and outlined in the Interim Report. This definition was used to test the viability of the Principles of Collaboration and the Escalation Pathway through application to a number of case studies, and via discussions with participating health services, the NDIS, the DHHS and the DSS.

2.1 Principles for Collaboration

The Principles for Collaboration were an outcome of the project’s work with scheme participants with complex needs who required both a joint planning approach and the development of integrated service responses as part of their NDIS plan. The Principles reflect the view of health services, the NDIS and consumers and indicate how the development of collaborative principles such as these, cannot be imposed by one system on another but must be agreed from the outset. Without such ‘in principle’ agreement at the outset, genuine collaboration will be impossible.

As the principles have significant policy implications, the project also consulted the three key government agencies involved in developing the NDIS / health interface. We met with policy staff from the DHHS, the NDIS and the DSS to canvass the draft principles. We also discussed the policy challenges in developing a workable interface and potential solutions to current challenges, including the impact of the new NDIS Complex Participant Pathway. A copy of the principles discussion document reviewed by the above agencies can be found in Appendix 3.

Overall, there was agreement that the principles were sound, and were hard to argue against. At a high level, the principles reflected the outcomes their agencies were working towards. Formalising collaborative working arrangements between the NDIS and health services is on the radar, but a clear strategic approach to delivering this is yet to emerge. Each of the agencies expressed strong interest in conducting trials or demonstration projects of collaborative pathways that enabled joint planning, shared service delivery and new service development.

While the COAG’s Applied Principles provided a backdrop to the discussions that informed the project’s Principles of Collaboration, health service’s personnel and program managers were acutely aware of the practical limitations of the COAG’s Principles, with many believing these should be replaced with a framework that enables local agreements between health services and the NDIS to resolve interface issues constructively.

It was felt that there was room for piloting cross program initiatives within the COAG Principles, but this would need agreement from the jurisdictions and also would need to

complement or link to the Complex Participant Pathway. The NDIS is aware of the risks associated with the current service gaps and believes that the Pathway will open up collaboration opportunities. There was interest in how service collaboration could be facilitated and the potential to develop different models of cross-‐sector service coordination to bring multiple services together around a participant.

How these projects would be funded and commissioned was not certain, but the agencies agreed to raise this question with their counterparts. The need to have these projects co-‐designed and co-‐funded by health programs in the jurisdictions was seen as important. Engaging health services and NDIS in this work would enable collaboration at the policy level from the outset. It will also address feedback that the project team received, that health services feel they are unable to negotiate with the NDIS to develop integrated plans for individuals with complex needs, and are vulnerable to cost shifting as a result. It would also enable some service level collaborative practice to inform the policy deliberations at the government level.

The principle that was most interesting in this context was the one on ‘Joint Planning’. The agencies agreed that all five principles of collaboration were describing a whole system of activity, but they saw that the most practical and the best place to start in developing a collaborative framework was with joint planning. The current NDIS planning method has been acknowledged as being of limited use for participants with complex health needs. It was agreed that the planning regime will need to develop discrete variations for this group of participants for it to be an effective tool, just as the NDIS is developing variants for participant experience in the revisions to the participant pathway.

The agencies were interested in gaining a better insight about what types of mainstream linkages were needed to complement the NDIS planning process. This report details these linkages for participants with complex health conditions, which involve strong working relationships between the NDIS and each local health service as well as with jurisdictional programs. The DSS representatives indicated they were approaching the mainstream interface issues from the position that people will use a range of mainstream and specialist services concurrently and that there should be ways to manage funding and service delivery so as not to interfere in these patterns.

There was common agreement that the NDIS and the jurisdictions have a joint responsibility to adapt to the changes, including encouraging new service development. The health services that the Alliance consulted accepted this, but also indicated that the NDIS needed to be flexible in their dealings with mainstream sectors, rather than dictating policy positions.

One challenge that was raised was how to move this forward in the context of the COAG NDIS principles that frame the interface mostly around a division of responsibilities, rather than as a framework for collaboration. The example was given of the NDIS and DSS being able to negotiate the difficult issues around out of home care services with the jurisdictions to show that the agencies can negotiate complex issues when there is a clear priority to solve a problem.

It was recognised that the lack of cross-‐program collaboration between health and disability sectors is not a new problem. It has been a feature of the old system, and in many cases the disability system had initiated programs that effectively masked the gaps that existed. Now that the NDIS is being implemented these gaps are more obvious.

It was generally agreed that while this may be the case, it did make the adoption of a deliberate strategy to generate collaborative activity all the more urgent as the gaps were now resulting in real cost implications for jurisdictional health services and the NDIS, and obvious gaps in services for individuals.

There was uncertainty about which agency should lead or fund any collaboration initiative involving the NDIS and health programs. There is no funding program attached to the interface work. It is not within the ambit of the Information, Linkages and Capacity Building (ILC), and it is not advocacy related. This type of work was most likely to be funded out of the Sector Development Fund, but this funding has now ceased. There was a suggestion that the jurisdictional health programs should contribute to any new work because of the potential benefits for them. All agencies said they would be interested to partner with others in interface projects, but the question remained about whose role it was going to be to initiate the work.

The cross government work is also focusing on ways of ensuring continuity for those people transitioning into the scheme as this is a pressing issue, meaning that the development of collaborative approaches (while highly desirable) are not at the top of the agenda at the current time.

This did not mean that addressing the opportunities for collaboration between health services and the NDIS was off the agenda, but the path to agreeing on a way forward is not clear. The Alliance suggested a specific commissioning program or funding round dedicated to mainstream interface initiatives, cross sector service coordination and joint planning that could be jointly run by the agencies.

Another issue that was raised in these discussions was the difficulty in settling on a working definition of complexity for people with disability and ongoing health service needs. The requirement to be in touch with multiple service systems and the need for integration of services for those with complex needs were posed as components of such a definition alongside the presenting clinical and disability issues people bring.

Working on a definition was seen as something that would be part of collaborative projects that may follow this project. The NDIS has a definition of complexity in its Complex Participant Pathway that could be a starting point.

The five principles of collaboration are listed below. Issues raised in relation to each principle were identified through our work with individuals and health services.

Principle 1: Partners in Care The NDIS and the health system are partners in care working collaboratively to address the needs of people with complex health and disability support requirements

There were a number of issues that health services experienced in working with the NDIS as a partner in care. These included

No structured process enabling direct contact with relevant NDIS personnel
Limited communication between sectors such as health and NDIS, resulting in gaps in funding and service delivery that then required an independent third party to negotiate and deliver an acceptable outcome
Role restrictions such as NDIS planners being unable to attend pre-‐planning and multidisciplinary team meetings
NDIS planners and LACs not valuing the information provided by health services. The COAG’s NDIS Principles5 presume the NDIS and the health system will “work together at a local level to plan and coordinate streamlined care”. Yet without the development of detailed collaboration protocols, governance arrangements and cross sector relationships between the NDIS and local health networks, this is simply not possible.

People with complex needs require integrated and coordinated services from the health system, the NDIS and other service systems. The planning and service delivery methods used in any collaborative system must therefore incorporate participant contributions; those of health and other community programs; and have well defined processes that enable joint planning, cross program service coordination, as well as the development of integrated service responses.

Principle 2: Early Identification of Need

Identification of disability and health support needs and engagement with the NDIS is part of the initial health service assessment.

As demonstrated in the case studies below, when health services understand the NDIS access process and have systems in place to trigger early access requests, issues relating to NDIS access are minimised and discharge is not compromised.

Despite this, a number of access related issues were identified in the case studies and through liaison with health services that included:

Health services staff remaining unclear about when they should apply to the NDIS. This was particularly critical for patients undergoing rehabilitation and for whom their final functional status was unknown
Delays in approving access requests of up to seven weeks 5 See: https://www.coag.gov.au/sites/default/files/communique/NDIS-‐Principles-‐to-‐Determine-‐Responsibilities-‐NDIS-‐ and-‐Other-‐Service.pdf

Documents being ‘lost’ by NDIS. This included Access Request forms that had an inaccurate return email address listed that meant the form was never received.

Further tightening of NDIS processes is required to ensure that the agency meets their mandated requirements for access approvals. While Section 20(a)6 of the National Disability Insurance Scheme Act 2013 requires NDIS to determine access decisions within 21 days of receiving the access request, this is not happening in many cases.

Principle 3: Dedicated NDIS pathway Dedicated access, planning and plan implementation pathways deliver integrated service responses for people with complex health and disability needs

The need for a dedicated pathway for participants with complex needs was highlighted in a number of the case studies outlined below. Some of the issues encountered by participants included:

Following access approval, lengthy delays in the allocation of an NDIS planner
Delays in plan approval that adversely impacted the health service’s discharge planning arrangements
Planners/LACs with inadequate or no experience in developing appropriate plans for people with complex needs
Need for an independent third party to negotiate NDIS transition for people with complex needs who require multi program service responses from for example, health, disability/NDIS, housing, mental health.

The NDIS’ generic planning and plan implementation pathways do not work for people with complex health and disability needs.

A dedicated pathway would support these individuals and their multi program providers by enabling timely access to the scheme; joint planning that addresses their multi program needs; and integrated service implementation appropriate to the ‘complexity’ of their situation.

At the time of writing, the NDIS is in the process of developing a ‘complex needs pathway’. While full details of the pathway have yet to be finalised, we anticipate the new pathway will address a number of the issues outlined above.

However, whether it can, will depend on the notion of ‘complexity’ that the new NDIS complex needs pathway utilises. If, as revealed in NDIS complex pathway workshops the Alliance attended, the scheme’s definition of complexity concerns intensity of need rather than the multi program service response the Alliance has identified through this project’s work, the NDIS’ complex pathway will be unable to address the need for joint

6 See https://www.legislation.gov.au/Details/C2016C00934

planning, development of integrated service responses and active cross sector coordination that scheme participants with this level of complexity will require.

Principle 4: Joint planning process NDIS and the health system will engage in a joint planning process for people with a disability who have complex health needs

As the case studies included in the Interim Report and again, in this Final project report reveal, joint planning by the NDIS and health services is not currently occurring. Instead, health services staff offer what they consider to be relevant supporting documentation to the NDIS in advance of the planning meeting. Responses to this proffered information have been varied and include the following instances of note:

Planners failed to read pre-‐planning documentation prepared and made available by health services staff to the planner, prior to the planning meeting
Planners/LACs who fail to acknowledge and/or value the clinicians’ expertise and the importance of their recommendations in developing appropriate plans for participants with complex needs
Plans that only considered a participant’s disability related needs, rather than needs that could adversely impact their disability. For example, the need for adjustment counselling relating to a catastrophic injury. Without such counselling, deterioration in the participant’s physical and mental health may result that in turn requires additional funding and support from the NDIS and relevant health services.

Representatives from both health services and the NDIS have stated that a joint planning approach is essential to meet the needs of individuals with complex needs.

Principle 5: Integrated service implementation A system of integration in service funding and delivery by the NDIS and the health system to deliver comprehensive supports to people with complex needs.

Due to significant delays in access and plan approvals, only a small number of case study participants progressed to implementation during the project’s second phase.

The following issues were highlighted through case studies throughout the project:

Where health service discharge is dependent on plan approval, a draft plan should be made available immediately following the planning meeting to assist with engagement of a suitably skilled support coordinator and service providers with capacity to deliver the integrated service responses required.
Support coordinators’ inability to be engaged prior to plan approval is resulting in significant delays to plan implementation. Allowing support coordinators to be engaged early and to participate in planning meetings will enable improved

understanding of integrated services responses required and, by enabling early identification and training of suitably qualified support providers/workers, will enable timely discharge from health services.

Their practice of referring to a limited number of discharge services such as local councils for home based supports, community rehab services and post acute care, has meant that health services have not needed a wide knowledge of disability services. When working with the NDIS, however, health services staff must be able to help participants select support services that can enable successful discharge.

Finally, participants with complex health and disability needs require their services to work together in a timely and integrated manner. Given the involvement of multiple service systems in the service responses this group commonly needs, support coordination is critical to ensure that services are appropriately integrated or linked; that gaps in support are proactively addressed; and review processes can be activated as required.

2.2 Health Service Capacity Building

During the first half of the project, the Alliance engaged closely with health service staff regarding the advent and implementation of the NDIS. These personnel included representatives from allied health, nursing and medical teams as well as health service line managers and hospital based project staff.

This initial engagement indicated that

Health services management had received basic information about the NDIS from the Victorian Healthcare Association (VHA)
Some health services had supplemented this VHA information with further education from other non government organisations
Some health services had established internal NDIS working parties to assist their services and staff with their ‘NDIS readiness’
Some health services had developed their own tools to assist their staff with NDIS pre-‐planning and established internal systems to manage NDIS processes.

Despite these activities, the majority of health professionals that the project worked with, both on individual cases and in the more formal mentoring and capacity building workshops, reported feeling ill-‐equipped to support their complex patients who were trying to navigate the NDIS.

As a result, the Alliance undertook four capacity building activities in the second phase of the project. These were

A health service learning needs analysis of allied health, nursing and medical staff to ascertain their confidence, knowledge base and development needs in relation to the NDIS
Capacity building workshops for heath staff. Three workshops were convened on topics identified in the health service learning needs analysis
A series of weekly formal mentoring clinics in two health services that focused on working successfully with the NDIS
Facilitation of a ‘local connections’ trial between a health service and an NDIS region to enable the establishment of important working relationships and practices that improved communication and information flow across both organisations.

This capacity building work was done with St Vincent’s Hospital Melbourne and Monash Health and is described in more detail in the following sections.

2.2.1 Health Services Learning Needs Analysis

In February 2018, the project conducted a survey of 35 health services staff to

Establish their levels of confidence in navigating the NDIS pathway including access, pre-‐planning, planning and implementation processes
Identify the main barriers and challenges faced by staff in engaging with NDIS
Identify further training priorities.

The results of the analysis were grouped according to staff confidence in navigating NDIS processes; key barriers staff experienced in their attempts to engage with the NDIS; and the training that staff identified as needing to help them engage constructively and confidently with the scheme.

a) Staff Confidence in Navigating NDIS Processes Health services staff were asked to rate their current levels of confidence in navigating the NDIS access, planning and implementation processes.

All staff rated their confidence in understanding the NDIS processes as low or very low, with over half saying they had no confidence at all. This was of particular interest to health services management who indicated that because staff had already had access to some internal training around the NDIS, they had assumed that levels of confidence would be higher.

| know nothing! No idea what to write in reports.

Physiotherapist

With a number of health service regions only recently becoming part of an NDIS transition phasing area, the only process that many staff had experienced and therefore had any confidence in navigating, was the NDIS access process.

A number of respondents indicated that social work clinicians had been unofficially designated as the ‘NDIS experts’ within the multidisciplinary team.

My knowledge of NDIS is minimal... | have relied on social work informing me what

needs to be done. Occupational therapist

Follow up discussions with a number of social workers indicated that this was not particularly helpful and that future learning and development opportunities should include staff from other professions. This is particularly important given that a variety of clinicians need to become familiar with tasks such as completing Access Request Forms, prescribing equipment for participants and assisting patients with pre-planning for NDIS.

Confidence In

Navigating NDIS Plan

Processes NDIS Access Pre-planning Planning

1 = not confident 7 = very confident

Implementation

1 52% 52% 64% 16% 32% 28% 20% 24% 16% 16% 12%

8% 0% 0% 4%

0% 0% 4% 0%

0% 0% 0% 0%

Table 1: Staff Confidence in Navigating NDIS Processes

Health Services Learning Needs Analysis, February 2018

b) Main Barriers to Engaging with the NDIS Staff were asked to identify the main barriers they had experienced in their interaction with the NDIS.

The survey indicated the greatest difficulty health professionals faced was making contact with the NDIS and understanding the NDIS equipment process.

Anecdotal feedback from staff relating to communication with the NDIS has revealed reasons for the key communication barriers:

¢ Incontrast to the previous disability system where health staff had access to dedicated disability hospital liaison workers employed by the disability program (DHHS), contact with NDIS staff is only possible via a generic 1800 phone number. Dedicated NDIS hospital liaison workers do not exist.

¢ The majority of health services use a pager system to contact hospital staff. When NDIS staff call a hospital health professional and leave a message via the pager system, the health staff member receives a message advising them to contact the NDIS on the generic 1800 number. A specific NDIS responder is generally not identified. This makes it very frustrating for health services staff who are then required to wait on hold on the 1800 number and speak to an NDIS representative who usually has no knowledge of their patient apart from brief notes available on the system. Health services staff reported that it would be more helpful to speak to a named NDIS contact person.

Q: What would help you in developing your skills, confidence and knowledge in working with NDIS participants?

A: Having reliable links in NDIS that we can call in unique circumstances to help guide us in what to do Social worker

Main Barriers / Challenges Identified Reported by % of Health staff surveyed

1 | Hard to contact NDIS 28%

2 | Equipment process not clear 28%

3 | Plan approvals taking a long time 25%

4 | Nocollaboration with health staff by the NDIS 14%

5 | Inexperienced planners / LACs 8%

6 | Documents have been ‘lost’ by NDIS 8%

Table 2: Key Barriers / Challenges Faced by Staff in Engaging with NDIS

Health Services Learning Needs Analysis, February 2018

c) Training Needs Identified by Health Services Staff From the survey, the top four training needs identified by health services staff were

i. Supporting patients to gain access to the NDIS ii. Working with patients to set appropriate NDIS goals iii. Prescribing / obtaining equipment under the NDIS iv. What to include in an allied health report for the NDIS.

This survey confirmed that front line health service workers had an extremely limited working knowledge of the NDIS. It also indicated strong demand for practical information and guidance in interacting with the NDIS for these front line staff. Health services management were also interested in how processes and guidelines that are used in hospitals and community health services could be adapted to better fit the requirements of the NDIS. The project also noted a genuine interest by health services in making systemic improvements within their services as well as developing the knowledge of front line staff.

2.2.2 Capacity Building Workshops for Health Services Staff

The Alliance facilitated three workshops with Monash Health staff that incorporated the four training areas identified in the needs analysis.

a) NDIS Access Workshop 90 Monash Health staff from allied health, medical and nursing areas attended two workshops that addressed how to access the NDIS.

Training covered the NDIS Access criteria as well as guidance on how to complete NDIS Access Request Forms and Supporting Evidence Forms. Staff were advised to address the functional impact of their patient’s disability and to use plain English wherever possible.

Workshop participants were surveyed about their knowledge of and confidence in

carrying out the NDIS access process at the beginning and end of each workshop. As

indicated in Table 3, Reported Levels of Confidence with the NDIS Access Process — Pre

and Post Workshop, all participants reported significantly improved knowledge of NDIS Access processes and confidence in using these processes following the workshop.

Level of Confidence with the NDIS Access Process

Pre and Post Access Workshop

25 ~~ oo )

20 T | Reported

15 Confidence Before

Number | the Access

of responses 10 4 Workshop

5 | Reported

Confidence After

0 the Access

Workshop

4 5 Level of Confidence Reported 6 7

1= Not Confident, 7 = Very Confident

Figure 1: Reported Level of Confidence with the NDIS Access Process — Pre and Post Workshop

Monash Health, Medical, Nursing and Allied Health Survey, May 2018

Thank you. Very clear presentation. Good tips for filling Great training! Now just a matter of out access form in terms of ‘doing’!

language to use

Stefanie, Occupational Therapist

| found the NDIS session on access very useful and practical. We were able to use all

of the information directly within our work practices. | am very much looking

forward to the next session!

Whitney, Occupational Therapist

As well as the survey results, this workshop was informed by work the Alliance had been undertaking with staff who were appealing NDIS access decisions for patients refused access despite having permanent and substantial disability.

The Alliance reviewed some of the Access Request Forms (ARF) submitted by the hospital and found that the information provided was highly medically focused and not clearly linked to functional impact. References to one patient’s rehabilitation potential led to the NDIS questioning whether that patient’s disability would, in fact, be permanent. Health staff were keen to understand how to present patient information in

terms the NDIS would understand and that would result in successful and timely access. The denials of access for these patients had significantly delayed discharge planning.

b) NDIS Pre-planning and Goal Setting Workshop Attended by 45 staff from a range of allied health disciplines, a Pre-planning and Goal Setting Workshop was also held with Monash Health staff. The session examined how to: = Guide pre-planning conversations with patients; = Record the information in pre-planning documents and = Support patients to develop relevant NDIS goals.

Staff were extremely interested in goal setting in the context of the NDIS pre-planning process. While allied health staff were very familiar with setting clinical and rehabilitation goals, they were less familiar with the NDIS planning process and the difference between clinical goals and NDIS goals. Staff also reported being uncertain about how to best assist their patients to prepare for NDIS planning.

By the end of the workshop, all participants reported an increased level of confidence in working with pre-planning and goal setting processes.

Level of Confidence with NDIS Pre-planning and Goal Setting

Pre and Post Workshop

| Reported

Confidence Before

the Access

Workshop

Number

of responses

| Reported

Confidence After the

Access Workshop

Level of Confidence Reported 6 7 1= Not Confident, 7 = Very Confident

Figure 2: Reported Level of Confidence with NDIS Pre-planning and Goal Setting — Pre and Post Workshop

Monash Health Allied Health Survey, May 2018

Excellent, but wish it was longer Case based scenario was a very helpful to complete activity. More of approach to assist with engaging these sessions please! audience and fostering learning

c) NDIS Equipment Workshop In response to feedback from staff, the Alliance also organised a workshop for Monash Health which addressed the NDIS equipment process. The session was co-facilitated by the Alliance and the State-wide Equipment Program (SWEP). There was keen interest in the session which was attended by 52 allied health professionals from both subacute and community health programs, as well as managers of Allied Health teams.

The session focussed on the role of allied health staff in prescribing equipment and, in particular the process for requesting hire equipment through NDIS, as this was new to the majority of attendees.

While some staff had attended the Alliance’s previous NDIS workshops on the access process and goal setting, it became evident from the questions raised in the session and comments via the feedback forms that a number of practitioners had not, and lacked even basic knowledge of NDIS processes.

[The content covered in this workshop] assumes an understanding of NDIS

systems that | do not have.

Mandy, Occupational Therapist

This highlights a need for health services to ensure that NDIS training is mandatory for all staff and students who may support patients who have a disability. The sessions at Monash Health were voluntary, with staff being able to ‘pick and choose’ which sessions they thought would be relevant to them.

Staff raised a number of questions and concerns during the session including how patients who are deemed to have a ‘health condition’, rather than a disability will be able to access equipment in this new environment.

Concerns were also raised about ‘wait times’ for participants who required equipment in order to ensure a safe discharge.

As evidenced by the survey results, all staff in attendance reported an increase in confidence and understanding of the NDIS equipment prescription process following the workshop. However, whilst all staff felt their knowledge had increased, not one practitioner reported feeling 100% confident at the end of the session, reflective of the complexity of the processes, and the fact that the equipment process may change again following full scheme roll-out in 2019.

Level of Confidence with NDIS Equipment Process

Pre and Post YPINH Education Session

10 | Reported Confidence

Before the Equipment

Workshop

Number

of responses

| Reported Confidence

After the Equipment

Workshop

Level of Confidence Reported

1 = Not Confident, 7 = Very Confident

Figure 3: Reported Level of Confidence with the NDIS Equipment Process - Pre and Post Workshop

Monash Health, Allied Health Survey, May 2018

Teagan (SWEP NDIS Manager) and the

lady from YPINH were very good at Thanks for the info re. hiring and reissued addressing our needs and questions. equipment — that was new for me In a changing world they have done a Fiona, Occupational Therapist

great job, thanks.

S Laura, Occupational Trerapist |

As the NDIS is a national service, none of the Victoria specific processes for prescribing equipment through SWEP are available on the NDIS website, a fact which adds to the general confusion for equipment assessors and prescribers. The staff reported that the session gave them much greater understanding about SWEP’s agreed working arrangements with the NDIS and what this means for them as practitioners.

Given the number of questions from allied health practitioners relating to equipment prescription, further work is definitely warranted in this area. Had time been available, further tools for allied health practitioners could have been developed, and should be considered in the near future.

2.2.3 Mentoring Clinics

Throughout the project, the Alliance established collaborative working relationships with health services staff at St Vincent’s Hospital and Monash Health Services. In the absence of direct support from the NDIS, health services staff regularly sought advice from the Alliance regarding the needs of individual patients and navigating the NDIS’ access, planning and plan implementation processes.

To support this process, weekly two hour ‘NDIS clinics’ were trialled with Monash Health and St Vincent’s over a six week period. Six clinics were held at each health service during this time, with an Alliance staff member available on site to respond to any questions concerning NDIS transition for patients with complex health and disability needs.

These clinics were very well attended. Over the course of the twelve clinics, the Alliance mentored thirteen staff and provided expert advice for twenty-‐eight patients with complex health and disability needs. Of the patients discussed in the clinics, six were classed as ‘long stay’ whose discharge had been significantly delayed by difficulties accessing disability supports, as well as a lack of suitable discharge destination. Many of the twenty-‐eight patients were discussed multiple times over the course of the clinics, with questions directed at specific areas of the NDIS’ planning and plan implementation processes.

Key issues discussed in the clinics included:

Housing options for people unable to return to their previous accommodation due to exacerbation of their disability. Options considered included Residential Aged Care services (RAC), Specialist Disability Accommodation (SDA) and private rental options.
Financial, emotional and direct care implications for a young person with complex needs entering Residential Aged Care
Early entry processes for people in non NDIS phased areas
The NDIS Access process, including how to request a review of an access decision
Pre-‐planning: how can health successfully contribute to NDIS planning and plan implementation processes
The NDIS review process: what to include in reports to assist a scheduled review for a long stay patient whose review was undertaken while still in hospital
Equipment: what can occupational therapists and physiotherapists do to progress equipment provision while the person is an inpatient
Plan Implementation: how can the hospital assist patients with choosing service providers with capacity to provide the integrated service responses they need
Supports a young person in aged care might be able to receive from the NDIS Through this work, the Alliance has developed extremely positive working relationships with key NDIS regional office staff and DHHS transition teams and brought these relationships into play to help health services staff progress NDIS access for patients and secure vital supports needed for their patients to be discharged safely.

Health service staff frequently reported that whilst the old state disability system was fragmented and inequitable, they at least had direct access to a DHHS Liaison officer for advice on how to help their patients access essential supports. Under the NDIS, however, they are often left floundering, not sure where to seek vital information if the NDIS website cannot provide the answer.

2.2.4 Collaboration by a health service and the NDIS The Alliance facilitated a unique collaboration between key staff from St Vincent’s Hospital Melbourne (SVHM) and the NDIS Vic North regional office. The aim of this collaboration was to facilitate better communication and information exchange about individuals engaged with both organisations. It will be evaluated over a forthcoming two-‐month period.

The objectives of the collaboration are to:

Support successful transition of SVHM patients with complex needs to the NDIS in the Vic North region
Develop and trial local processes that enable better information exchange for planning and delivery of health services and NDIS funded supports to selected participants
Maintain a de-‐identified register of NDIS participants and key outcomes. The impetus for this collaboration was evidenced by the project’s work; the frustration SVHM staff experienced when they tried to engage with the NDIS; and the need to achieve better integrated health and disability services for complex patients leaving the hospital. It took some time to negotiate because of the parallel development of the NDIS’ complex participant pathway. The complex pathway team at NDIS National Office have taken a strong interest in this initiative and will conduct the evaluation in the context of the scheme’s complex participant pathway work.

2.2.5 Capacity Building Activity Outcomes

Given the feedback from health services staff at Monash Health, St Vincent’s Hospital

Melbourne, Alfred Health (Caulfield Hospital), Melbourne Health and Eastern Health

throughout the project, it is clear that health professionals require access to quality, practical, and clear information about how they can support their patients who are transitioning to NDIS.

The strength of the project’s capacity building work was that it did not simply provide isolated training sessions. Our work was underpinned by an existing relationship with health services that involved working alongside staff with complex patients; and providing practice guidance and leadership in negotiating solutions with the NDIS and disability providers.

While some capacity building activities involved training health staff in a range of NDIS processes, as the scheme’s complex participant pathway is implemented, we expect these processes will change and these changes will need to be communicated to staff.

With the project’s time limitations, there is a very real danger that the gaps in knowledge we found in the initial phase of the project will reappear if there is no clear mechanism for communicating and embedding these changes in place.

The NDIS is evolving so rapidly that traditional training approaches have become redundant. One of the Alliance’s key learning’s from this project has been that establishing strong relationships and networks that can facilitate collaboration, is a far more effective way of managing change than instrumental training or reliance on resource kits or guidelines.

Our considerable experience with complex needs individuals as well as our extensive support of heath services adapting to the new system, makes the Alliance ideally placed to extend these collaborative activities and facilitate the successful adoption of the NDIS’ complex participant pathway within these and other health services.

While the NDIS and health services are both dependent on each other, they also rely on a strong working knowledge of each other’s systems for participants to obtain the integrated service plans required. Yet a framework for this collaboration and joint work remains elusive.

Instead of the scheme’s current ‘conform and perform to NDIS requirements’ approach, the capacity building strategy for the remainder of the NDIS transition must embed a partnered approach to engagement with health services. While the NDIS clearly has a significant need to undertake its own capacity building in relation to collaborating with health services, this has been overshadowed by the scheme’s expectation that health services will simply be ‘NDIS ready’.

Health services obviously have a great deal to contribute to the outcomes sought by the NDIS, particularly in the area of the scheme’s risk management of participants with complex health needs. The most important capacity building area for both the NDIS and health services in the next stage of the scheme’s transition is perhaps the capacity to collaborate. This is not only at the patient/participant level, but also at the service level between NDIS regions and health networks and primary health networks, as well as at the policy level between the NDIS and the health programs themselves.

2.3 Case studies In the second phase of the project, a further four case studies were completed and two of the case studies from the initial phase of the project were updated. Whilst the case studies in the initial phase of the project had a scoping emphasis, in the subsequent case studies, we have looked at them through the lens of the NDIS pathway and have considered how the draft principles of collaboration were reflected throughout each individual’s journey.

The case studies were intended to describe how the principles would work in practice but given the delay in the start of the project, the time left to implement the second phase of the project was only 8 weeks, which didn’t adequately allow for any realistic practice change within the health services, let alone testing the impact of any potential change on the transition of individuals into the scheme. Even if the health services had actively embraced the principles, the NDIS was not going to accommodate such a major shift in process in the midst of developing the Complex Participant Pathway.

As a result, the case studies apply the principles in a conceptual way.

Case Study 1 - Trish’s Story

Following a stroke in June 2017, 56 year old Trish sustained an acquired brain injury (ABI). Prior to this, she was living independently in the family home with her husband, daughter and 10 year old granddaughter. Trish maintained good health before her ABI and was working as a hairdresser close to home. Her husband and adult daughter both work full time and her family have a caravan in Torquay where they regularly spent weekends.

Trish is expected to make slow functional gains in the future and will require a significant amount of ongoing support. Trish’s family is highly supportive and are willing to provide informal support to complement her funded support.

Key Actors

¢ Trish, her husband and her daughter ¢ Rehabilitation inpatient health service including social worker, occupational therapist, physiotherapist, nursing and medical staff

¢ YPINH National Alliance

¢ Support coordinator ¢ Support worker agency staff

Regions Responsible

¢ NDIS region: Outer East (transition Nov 2017) ¢ DHHS region: Eastern

Health Needs and Functional Impairments

Following her stroke, Trish was hospitalised and commenced inpatient rehabilitation two months later. Her initial discharge date was delayed for six weeks by a fall on the ward in which she fractured her ankle. Trish was deemed medically ready to be discharged in March 2018. Trish’s primary stated goal was to return home.

Despite being approved as eligible for NDIS in January, her planning meeting and plan approval did not take place until April 2018 - 17 weeks after her access decision was made. This meant she could not be discharged home until mid May 2018, some two months after the hospital deemed her ready for discharge.

Her ABI has left Trish without functional use of her right arm, limited movement and control in her right leg and significant impaired cognition and communication. She requires support with all personal care activities including transfers, assistance with meals, and all domestic tasks. Trish also requires assistance to mobilise in her manual wheelchair. Because she has visual-spatial and executive functioning deficits, Trish is unable to use an electric wheelchair.

Due to her difficulties with memory, attention and cognitive processing, Trish also requires support in developing strategies and routine; and to build her independence with daily tasks and accessing the community.

Timeline for NDIS Activation

09/06/2017 | Following a stroke, Trish is admitted to hospital

11/08/2017 | Transfers to a rehabilitation ward

26/09/2017 | Hospital social worker contacts NDIS on Trish’s behalf to request an Access

Request Form

06/10/2017 | Trish receives Access Request Form

26/10/2017 | Access Request Form with evidence of disability is sent to NDIS

01/11/2017 | NDIS Eastern Region rollout commences

21/12/2017 | Hospital refers Trish to the Alliance for assistance with NDIS transition

08/01/2018 | NDIS confirms that Trish’s access request has been approved

01/03/2018 | Hospital determines that Trish is medically ready for discharge. Trish

cannot be discharged as NDIS supports are not yet in place

14/03/2018 | Notification received that NDIS planning meeting has been scheduled for

5/04/2018

15/03/2018 | Pre-planning meetings held with Trish, her husband, the hospital rehab

team and the Alliance

27/03/2018 | Trish and her husband interview two prospective support coordination

agencies and select their preferred agency. This process is facilitated by the Alliance and supported by the hospital social worker

05/04/2018 | Planning meeting held with Trish, her husband, the hospital social worker

and the Alliance

23/04/2018 | Trish and her husband interview three prospective support worker

agencies and select their preferred agency. This process is facilitated by the Alliance and supported by the hospital social worker

30/04/2018 | Trish’s plan approved by NDIS

14/05/18 Four carers from the selected support worker agency are given training in manual handling by the hospital treating team prior to Trish’s discharge

15/05/18 Trish is discharged home from hospital

Trish’s NDIS Pathway

NDIS Access was confirmed eleven weeks after the Access Request Form (ARF) was submitted to the NDIS, eight weeks longer than the three weeks specified in the NDIS operational guidelines.

While Trish lives in a new NDIS roll out area, the hospital had prior experience with the NDIS and the scheme’s access process in the NEMA region. As a result, the hospital team started the Access process early in Trish’s rehabilitation and provided evidence that substantiated Trish’s permanent disability status. The hospital social worker completed the form appropriately and although it took longer than the specified time,

access was met following submission of the first ARF and did not require an internal NDIS review.

In concert with her treating team, the Alliance facilitated two pre-planning sessions with Trish and her husband to develop goals and consider the supports that Trish would need to return home and adapt to her life with a disability.

Because they had worked with other patients who had received plans without adequate supports that then resulted in significant delays to their discharges (a delay of nine months in one instance), the hospital team were particularly concerned to ensure that all required information was included in Trish’s plan.

The nature of the current NDIS planning process that allows no opportunity for further information or updates to be provided to the planner following the planning meeting, also meant the hospital team were highly attuned to ‘getting it right’ the first time. Despite the need to keep to discharge timelines, the team requested the planning meeting be pushed back by a week so they could gather comprehensive information they felt was required.

The hospital adapted the Alliance’s pre-planning template to its requirements, making the template more like the reporting formats they must also complete. Rather than describing her functional needs, Trish’s completed pre-planning document contained predominantly medical information. However, there was insufficient time to revise it thoroughly as the document was only completed the day before the planning meeting.

The pre-planning document was sent to the planner in advance of the meeting.

Access Pre-planning Planning Implementation

Due to limited availability of both the hospital team and the NDIS planner, Trish’s planning meeting took place in early April, more than three weeks after the planner was allocated by the NDIS.

The allocated planner was unwell on the day of the planning meeting so an alternative planner attended, who had not had chance to read the pre-planning documentation prepared by the hospital team. Participants at the planning meeting included Trish, her husband, representatives from the hospital’s inpatient rehabilitation team and the Alliance.

The planner was advised at the planning meeting that Trish was ready for discharge and funding for appropriate supports was the only thing preventing her discharge home. Despite this, there seemed to be no urgency placed on Trish’s plan being approved. The

hospital social worker contacted the planner via email eleven days after the planning meeting to enquire when the plan would be approved. She received no response and was unable to contact the planner by phone as no individual contact details were provided by the planner.

Eighteen days later, Trish’s plan had still not been approved. Unable to wait further for NDIS supports to enable Trish’s discharge, the hospital seriously considered referring Trish to a Transitional Aged Care service.

The Alliance activated its contacts in the NDIS Vic East region to convey the urgency of the situation. An NDIS Team Leader was subsequently advised to escalate Trish’s plan’s progression and one business day later, Trish’s plan was approved by the NDIS. Without the Alliance’s intervention, though, Trish’s referral to a Transitional Aged Care service may have proceeded.

Access Pre-planning Planning Implementation

Due to the delayed discharge and plan approval processes, the Alliance suggested Trish and her family start the process of provider selection prior to plan approval. While unorthodox, this reduced the time that would otherwise have been spent activating Trish’s plan once it had been approved.

Due to Trish’s complex needs, her plan was likely to include a significant budget for support workers to assist Trish with personal care tasks, meal preparation and community access. Because the Alliance was aware of workforce shortages that have seen providers take up to three weeks to recruit a team of four to five support workers, engaging a support provider was a priority.

As part of the selection process, Trish and her family interviewed three prospective support providers and two support coordination agencies. Understanding that they may not be appointed, these agencies agreed to visit Trish in hospital and committed several hours of unfunded work to progress the interview process. While some agencies are willing to engage in this selection process, others are not and will only agree to engage with a participant once a plan has been approved and a service agreement signed. In Trish’s case, the time pressure on her hospital discharge meant the willingness of the agencies to engage prior to discharge was particularly important.

The Alliance mentored the hospital social worker in facilitating the provider selection process including choosing agencies to be interviewed, by suggesting the following criteria: e Is the service provider able to service the area Trish lives in? ¢ What is the provider’s experience of working with people who have had a stroke/ABI? ¢ How does the provider select and train workers? Are workers given regular retraining?

The social worker also helped Trish and her family to devise questions they wanted to ask the providers directly. While plan implementation is a very new activity for health services, it is one that they may need to engage with in the future if they are to support their patients with timely and safe discharge planning.

At the time of writing, Trish’s plan has been approved and the health service is preparing to implement the plan with Trish, her family and the selected support coordination and support providers.

Because the service provider had been selected, training of a team of support workers

could occur prior to discharge. As a result, Trish was able to be discharged within two weeks of the plan’s approval.

Application of the Principles — Trish’s Story

Principle 1: While Trish’s treating team were confident in navigating the access

Partners in Care | process, they would have benefited from access to a specific NDIS

individual or team that they could contact directly to address concerns about the delays to access, plan approval and subsequently implementation. In the absence of the Alliance’s support post the completion of this project, local area health services will no longer have access to the direct contacts within NDIS to escalate issues, which was critical in Trish’s case.

The availability of direct contact between NDIS and health is a precondition to facilitating a more collaborative approach between the two systems resulting in better plans, stronger outcomes for participants with complex needs and a more timely discharge. Feedback from health services is that they are strongly in favour of the implementation of Principle 1.

Principle 2: Trish’s story highlights the positive outcomes that can be achieved Early when local area health networks develop protocols to enable early

identification of | identification of the potential need for NDIS supports.

need In Trish’s case, her treating team submitted the Access Request Form in a timely manner, but her access decision was delayed by seven weeks due to internal delays within NDIS. For a partnership to be effective between NDIS and the health system, NDIS needs to meet its obligation in determining access decisions within the mandated 21 day period for priority entry.

Principle 3: Trish’s delayed discharge due to an untimely planning process

Dedicated NDIS | provides confirmation of the need for a prioritised planning process

pathway for participants with complex needs.

Despite meeting access in early January, and being medically ready for discharge in March, Trish’s NDIS supports were only approved at the end of April. The absence of mandated timelines relating to plan approvals and a dedicated pathway for complex participants made it very difficult for the hospital to plan appropriately for Trish’s discharge. Delays in plan approval also caused undue stress to Trish and her husband who were increasingly concerned that in the absence of NDIS supports, she risked being discharged to aged care.

A prioritised access, planning and plan implementation pathway for participants with complex needs would ensure a more timely transition for participants from access to implementation with improved outcomes for all stakeholders.

Principle 4: While Trish’s health team were aware of the importance of Joint planning supporting the planning process, it will take some time for them to process adjust to the NDIS. Hospital staff tend to have a ‘medical’ bias which

is reflected in the information they provide to planners.

At present, there is no relationship between planners and the health service, so there was little opportunity for Trish’s health team to learn more about what NDIS required of them. Throughout the scope of this project, the Alliance supported key hospital personnel and provided education in this area.

There is a strong feeling from the health service that they are simply contributing clinical information to a non-clinical process, and they are not confident that the information they provide to planners will be fully considered integrated into the plan. Their stated preference is for a planning process that enables them to interact more closely with disability services and enables them to guide service delivery for their patients.

A two-way planning process with health staff and the NDIS planner working together collaboratively would be a far more effective approach and lead to better outcomes for the participant. The current system of health services providing reports which may or may not be used by the planner is not working, and could potentially be harmful with health services at risk of disengaging from participating in the planning process altogether.

Principle 5:

Integrated

service implementation

Planners should at least provide an indication of the level of support that might be approved so prospective providers are able to be given accurate information about the anticipated level of support that they may be engaged to provide.

To date, health services have not been required to have an intimate knowledge of service providers. Under NDIS, health services will need to have systems in place to assist patients to shortlist and select appropriate providers, and commence the plan implementation process

Case Study 2: Stuart’s Story

Background Information / History

Stuart is a 37 year old man who has an ABI from a stroke in 2010. On Stuart’s admission to hospital in November 2017, he was assessed as having an infection under his artificial cranial cap.

Stuart had been living with his adoptive parents and sister, who were finding it increasingly difficult to support him. His mother had reported high levels of stress, and had been having harmful thoughts towards Stuart. The family indicated that they were no longer able to support him at home due to his high care needs, verbal and physical aggression, carer burnout and lack of funded support.

Stuart had an Individual Support Package (ISP), which provided personal care and community access, however this was withdrawn by DHHS in 2016, reportedly due to inappropriate spending of the funds, and no other funding or external support replaced the ISP. Since that time, Stuart’s parents had been providing all aspects of Stuart’s day to day support, including 24-hour supervision.

Key Actors

¢ Stuart and his adoptive parents

¢ Rehab inpatient health service — social work, occupational therapy, physiotherapy, nursing and medical

¢ Community Brain Disorders Assessment and Treatment Centre (CBDATS) and the

Royal Talbot Brain Disorders Unit

¢ YPINH National Alliance

¢ NDIS Support Access Team

¢ DHHS Intake and DHHS NDIS Southern Transition Team

¢ VCAT and appointed Guardian from the Office of the Public Advocate

Regions Responsible

¢ DHHS region: Southern ¢ NDIS region: Southern Melbourne (transitioning 1* Sept 2018) and

Northern Melbourne

Health Needs and Functional Impairments

Stuart was born premature, and spent over 13 months in hospital from birth. He is an asthmatic, a former intravenous drug user, and also has obstructive sleep apnoea, which is unable to be treated as Stuart cannot tolerate the recommended CPAP machine.

Stuart has significant functional impairment including left sided hemiplegia, poor communication and impaired cognition. Stuart requires full assistance with feeding, personal care, medication management, transfers and mobility. He mobilises with a

manual wheelchair, and requires the support of two people for all transfers. Stuart is doubly incontinent.

Stuart is impulsive and is at high risk of falls. His behaviour creates difficulties for his family, as he is verbally aggressive, and frequently yells out. He has also displayed physical aggression.

Timeline for NDIS Activation

27/11/2017

Stuart admitted to emergency following an infection under his cranial cap.

15/01/2018

Referred to the Alliance for support with his transition to NDIS.

06/02/2018

Hospital social worker sent updated Disability Support Register application to DHHS for Shared Supported Accommodation and an ISP

12/02/2018

Medical team referred to the CBDATS for assessment and consideration for admission to the Brain Disorders Unit.

21/02/2018

CBDATS completed their assessment.

26/02/2018

CBDATS team agree to Stuart being admitted to the Brain Disorders Unit to assist with addressing behaviours of concern, the development of a behavioural management support plan, and further stabilisation. Admission is dependent on Stuart having funding for community access.

01/03/2018

The Alliance contacted DHHS NDIS Southern Transition Team to enquire

whether Stuart could be considered for early NDIS entry. They advised that they would make enquiries and provide feedback.

The Alliance also contacted the DHHS NDIS Supported Access Team. They

said they would promote Stuart for early entry or provide one-off funding to support him until he transitions to NDIS.

02/03/2018

Phone call from DHHS NDIS Southern Transition Team to advise that the list of individuals deemed to require ‘priority entry’ in the Southern Region had already been sent to NDIS, and there was no option for Stuart’s early entry to NDIS at that stage.

05/03/2018

Hospital social worker emailed DHHS Southern requesting one-off funding for community access and therapy to support Stuart’s admission to the Brain Disorders Unit. This was denied. Hospital then sent application to YoungCare for philanthropic funding for Stuart’s community access which was approved.

26/03/2018

Given that Stuart was unable to return home following his discharge, the hospital decided to submit an ARF to NDIS on the basis that he was now effectively homeless.

11/04/2018

NDIS actioned the access request as a priority, with prompting from the hospital social worker who contacted NDIS every few days to follow up. Stuart received confirmation that he had been granted access on 11/4/18.

12/04/2018 | Meeting held with staff from the Alliance, Brain Disorders Unit (BDU) and

the hospital social worker regarding Stuart’s discharge to the BDU. Following confirmation of Young Care funding and NDIS eligibility, Stuart was Officially accepted into BDU program. The hospital set Stuart’s discharge date at 8/5/18.

13/04/2018 | Alliance sent an email to regional NDIS office to request an NDIS planning

meeting for 28 days following Stuart’s admission to BDU. NDIS agreed to schedule a meeting for early June.

03/05/2018 | Case Conference held with Stuart’s family and his rehab team. Stuart’s

family withdrew consent to Stuart’s discharge to BDU as they were concerned about the admission being for a planned two-year period, preferring to take Stuart home. Given the history of significant carer stress, Stuart’s treating team did not agree to a home discharge and referred to VCAT for a Guardian decision maker to be appointed.

04/05/2018 | VCAT Hearing held, and Guardian appointed from the Office of the Public

Advocate.

09/05/2018 | Stuart was discharged to the Brain Disorders Unit on the

recommendation of his Guardian.

Pending NDIS planning meeting has not yet been scheduled. Delayed until Stuart has settled at BDU

Stuart’s NDIS Pathway

Stuart’s treating team were familiar with the NDIS access process and the need to prioritise submitting the ARF, but they were unable to do so as Stuart’s home region in Southern Melbourne was not due to roll-in until September 2018 and early entry had been denied.

Once the hospital considered Stuart to be ‘homeless’, they completed the ARF. The hospital provided adequate supporting evidence, and once the form was submitted, contacted NDIS every few days to ensure that Stuart’s access request was progressing. With that prompting, NDIS access was approved by NDIS within two and a half weeks.

The hospital team compiled a comprehensive pre-planning document, which incorporated Stuart’s background, disability, functional impairment, behavioural issues, equipment and support needs, and other unmet needs. They also provided details about his family background, his funding background and the plan for Stuart to move to the Brain Disorders Unit following discharge.

The Brain Disorders unit has also developed their capacity to work with the NDIS systems through the Alliance’s mentoring and have committed to contribute their information to the pre-planning effort.

The pre-planning document will be sent to the NDIS planner in advance of the meeting.

Stuart has only just moved to the Brain Disorders Unit at the time of writing. His planning meeting is not scheduled until early June.

No comments can be made regarding the implementation of Stuart’s plan as planning has not yet commenced.

Application of the Principles — Stuart’s Story

Principle 1: Had NDIS and Health been operating as ‘Partners in Care’, Stuart,

Partners in Care | his family and support network could have been spared a great

deal of stress and anxiety about Stuart’s future.

As evidenced by his timeline, the Alliance and his rehab team were unable to obtain any support for Stuart from DHHS Southern Region, as DHHS would not approve one-off funding or promote Stuart for early entry to NDIS.

There was no communication between NDIS and DHHS to determine how Stuart could be supported to enable discharge home. Both DHHS and NDIS provided independent feedback to the Alliance and rehab team, and suggested that the other service would be more appropriate to provide support to Stuart. The clear outcome being that had Stuart not been deemed ‘homeless’, he could not access disability services or be discharged until his region transitioned to NDIS in September 2018.

In order to implement a true partnership between Health and NDIS, clear communication channels need to be established between the two parties.

In Stuart’s case, the Alliance and his rehab team were required to contact a large number of individuals and teams within both

Principle 1: Health and NDIS before any action could be taken. This included:

Partners in Care ¢ DHHS Intake

(cont.) ¢ DHHS NDIS Transition Team

¢ DHHS Supported Access Team

e NDIS Access Team

¢ NDIS Regional Contacts

Without the intervention of a capable intermediary to wrangle the multiple organisations and actors (in this case, the Alliance representative), Stuart would continue to live in hospital. Stuart’s case was both administratively and clinically complex and neither the hospital or the NDIS could not manage his transition effectively.

A formal partnership approach with clear pre-defined roles, policy and funding expectations would have been particularly helpful in providing a smooth transition to NDIS for Stuart, as opposed to the disjointed and unhelpful experience he was subjected to while trying to access disability supports.

Principle 2: Stuart’s hospital team were very familiar with the NDIS access Early process and completed the ARF once he was medically stable and

identification of | deemed to be homeless.

need

While the early identification of need was done, there was no opportunity to action funding and services because of a bureaucratic delay. The delay in planning caused by the rollout date for his region created a major barrier to his transition. This made a complex situation even more complex.

Stuart’s case highlights the importance of the principles and process being seamless at full scheme. It also shows the benefits of health networks adopting protocols to identify potential NDIS participants early and follow through with access requests.

Principle 3: Given the complexity of Stuart’s social and psychological needs

Dedicated NDIS | and living situation, Stuart’s health team would have benefited

pathway from access to a ‘complex needs’ team within NDIS who with the

assistance of a ‘wrangler’/ facilitator could have worked collaboratively to advise the pathway for Stuart to gain access to NDIS and suggestions for appropriate services that would be beneficial for Stuart.

Principle 3:

Dedicated NDIS

pathway (cont.)

With DHHS refusing to provide services, and NDIS not yet able to be engaged, the hospital team looked to the Alliance for guidance and support.

The Alliance representative provided strategies and suggestions regarding engaging DHHS and NDIS, as well as suggesting that CBDATS and the Brain Disorders Unit could be a helpful option to assist with stabilising Stuart and implementing strategies regarding his behaviour and to source alternative one off resources to broker an appropriate and sustainable outcome

Once the SDF project has concluded, the introduction of a complex needs team within NDIS that health services can contact would be particularly welcomed by health networks. Without this support, individuals like Stuart will have extended stays in hospital without a clinical need for them to be there.

Principle 4: Joint planning process

In Stuart’s case, had planning been able to take place in the hospital, the involvement of NDIS in the pre-planning stage would have been particularly helpful, as the planner could have worked with Stuart and his health team while they were considering potential discharge options, assessing the risks and possibilities, and determining appropriate action.

The current NDIS planning mechanism does not provide any meaningful collaboration with health services, which for someone like Stuart adds significant risk to the viability of his support. Rather than providing clinical information to a non-clinical planning process, the health services Stuart needs must be integrated in a plan alongside his disability supports. A representative from Stuart’s rehab team will not be present at his planning meeting, despite being best placed to provide input into his plan, having worked with him for the last six months. His rehabilitation goals and other clinical imperatives will not even be referenced in his NDIS plan. Leaving this out means that there is no mechanism to lock in a commitment from health programs to provide these services, leaving a critical gap in his support. NDIS supports are not substitutes for health services.

Principle 5:

Integrated

service implementation

As Stuart has not progressed to planning, we cannot comment on the implementation of his plan.

Case Study 3: Linda’s Story

Background Information / History

Linda is a 48 year old woman who was diagnosed with primary progressive multiple sclerosis (MS) in early 2017 following a three year history of falls and progressive weakness.

Prior to diagnosis, Linda had worked for over 20 years in administrative roles in education, until she found it increasingly difficult to manage her fatigue and weakness and decided to retire. Linda did not seek medical advice regarding her symptoms or the decision to cease work. At this stage Linda’s mother was assisting her with some daily personal care tasks and she was accessing the community with a manual wheelchair that she had purchased herself. Following a major fall at home in December 2017 Linda was admitted to hospital and remained an inpatient for over two months.

Although only recently diagnosed, Linda experiences significant functional impairment and is no longer able to return to the townhouse she owns as she requires an accessible environment. She has now moved into the back room of her ageing mother’s house that requires modification and significant de-cluttering, as the room is filled with the belongings of her parents and sister, who recently passed away. Linda’s mother lacks insight into the seriousness of Linda’s MS and underestimates the risks that are present in their living situation.

Linda is unable to access any other rooms in the house and has to enter via the rear of the property. Her mother is not inclined to address the state of her house to accommodate Linda. Linda’s father lives in a nursing home nearby.

Key Actors

¢ Linda and her mum ¢ Rehab inpatient health service — social work, occupational therapy, physiotherapy, nursing and medical ¢ Rehab in the Home (RITH) — Occupational therapy and physiotherapy ¢ Local Community Health Centre — Occupational therapy

¢ YPINH National Alliance

¢ NDIS Local Area Coordinator

¢ Support coordinator and support worker agency

Regions Responsible

e NDIS region: NEMA ¢ DHHS region: Northern

Health Needs and Functional Impairments

Linda has significant worsening MS symptoms including right sided weakness, very limited mobility and cognitive symptoms such as processing issues, problems with intentionality, communication, word finding difficulty and a lack of insight. Linda has

also demonstrated some impulsivity, placing her at risk of falls. She requires assistance with all aspects of personal support. She is currently mobilising using a manual wheelchair, however this is not sustainable due to fatigue, and her inability to use her dominant right hand. She also experiences symptoms of depression, social isolation and feels that she is a burden on her mother.

While Linda is currently able to step pivot transfer from her manual wheelchair on and off the toilet with the supervision of her mum and assistance of a hand rail, she is unable to use the shower due to access issues within the bathroom.

Given the rapidly progressive nature of her MS Linda has found it difficult to adjust to her loss of independence and the uncertainty of what the future may hold. Any disability support workers for personal care she engages will need to be closely trained in the ability to recognise disease symptoms and changes related to MS. It will be important for them to have access to clinical secondary consultancy to assist in managing the progressive nature of her disability. Equipment revisions will also need to be built in to her plan.

Timeline for NDIS Activation

14/12/2017 | Linda was admitted to hospital following a major fall.

Early January | Linda was transferred to a rehab ward.

2018 Referral made to the Alliance for assistance with transitioning Linda to NDIS.

Access Request process had already been completed during a previous hospital admission in 2017 but not finalised due to missing documentation. The hospital rectified this and requested priority status and Linda’s access was subsequently approved

24/01/2018 | The Alliance were advised by the hospital that Linda wanted to withdraw

from the NDIS planning process due to a negative interaction with disability services the previous year in relation to the installation of a grab rail.

23/02/2018 | Linda was discharged from hospital to her mother’s home as her own

home is inaccessible. Referred to Rehab in the Home (RITH) for outpatient rehab.

27/03/2018 | Linda was re-referred to the Alliance by the RITH team — Linda now open

to receiving NDIS support to maintain her at her mother’s home.

10/04/2018 | Notification received that Linda’s planning meeting has been scheduled

for 1/5/2018. Planning meeting to be conducted by the Local Area Coordinator (LAC). The Alliance liaised with the LAC planner prior to the planning meeting to provide some insight into the complexity of Linda’s situation.

23/04/2018 | Pre-planning meetings held with Linda, her Mum, the RITH OT and PT,

Community Health OT and the Alliance. The collected information was provided to the LAC planner in advance of the meeting.

01/05/2018 | Planning meeting held with Linda, her Mum, RITH and the Alliance. Linda

chose MS as her Support Coordination Agency.

Pending At the time of writing, Linda’s plan has not yet been approved

Linda’s NDIS Pathway

Linda’s hospital team were familiar with the NDIS access process having facilitated a number of access requests since the North East Melbourne Area (NEMA) rollout in July

The team were aware of the importance of commencing the access process early and followed up accordingly.

As Linda had not accessed disability services in the past, Linda was required to do a full ARF. Her form was completed by a hospital social worker during a previous hospital admission for a bad fall.

The Alliance became aware that the hospital had previously submitted an ARF for Linda in 2016 but it had never been processed due to key documents being missing from her file. The current staff were not aware of this at the time of commencing her new ARF. The hospital resent the documents, NDIS prioritised the access request and Linda’s eligibility was confirmed soon after.

Soon after this, Linda became anxious and confused about the NDIS and decided that she did not want to proceed with planning, conflating a bad experience she had with the installation of a grab rail in her bathroom with using disability services more generally.

Following discharge to her mother’s home, Linda was referred to RITH and developed a positive working relationship with the allied health team. They provided Linda with consistent messages of encouragement about the potential benefits of re-engaging with NDIS with the supports being critical to remain living at home with her mother.

The Alliance facilitated a pre-planning session with Linda and her mother, which was also attended by the OT and physiotherapist from RITH and the OT from the local community health centre.

This session was valuable because none of her therapists had attended a NDIS planning meeting before, so were unsure of what information they needed to provide. They were all keen to participate in the pre-planning process as a learning opportunity.

The therapists prepared a pre-planning report for the LAC planner which outlined Linda’s therapy goals and her need for equipment and modifications, but the report was limited in scope and focused exclusively on her rehab needs and omitted key information about the precariousness of the informal care provided by her mother, the impact of the progression of her MS and the support required for her impaired cognition and depression.

The Alliance intervened, preparing a more comprehensive pre-planning document which incorporated all aspects of Linda’s health, wellbeing and living situation that complemented the therapy report. The pre-planning document was sent to the LAC planner in advance of the meeting.

Access Pre-planning Implementation

The Alliance contacted the LAC, and requested that Linda be re-streamed to the NDIS for planning because of her complex needs. Linda’s complexity was expressed in terms of her significant cognitive impairment, involvement of more than one service sector (health and disability) in addition to a volatile social, family, financial and housing situation. The Alliance was advised that re-streaming was no longer an option for participants who are not living in a residential aged care facility, and the planning meeting would be conducted by the LAC.

Linda’s planning meeting was held on 1/5/18, and was attended by Linda, her Mum, the RITH OT and physiotherapist as well as the Alliance. The meeting had a positive focus, and the LAC developed rapport with Linda. While the LAC had received the pre-planning document, she admitted she had not read it in its entirety.

The LAC agreed with Linda’s goals that had been developed in the pre-planning phase and concurred that Linda required home modifications; hire and purchase of equipment; support workers to assist with personal care, community access, implementation of an exercise program, transport and support coordination.

The LAC had concerns about including the following items that Linda’s support team had recommended: ¢ Trained support workers to support Linda with building a routine, following through on recommended cognitive strategies and organisational tasks ¢ Therapeutic support to assist Linda to adapt to the changes associated with MS including her loss of function and independence. ¢ Positive behaviour plan to equip support workers with strategies about how to best support Linda with her cognition and mood ¢ Asix month scheduled review, due to the particularly aggressive nature of Linda’s MS and her likely changing needs within that time.

These elements are critical for Linda’s support, and alarm was expressed by the Alliance and the rehab team that the LAC had separated these out from other parts of her

supports to question. The incomplete understanding of the impact of progressive MS by the LAC was precisely why the Alliance had sought a more experienced NDIS planner

Linda nominated her preferred support coordination service, and elected for her plan to be managed by NDIS. The LAC requested copies of quotes for the hire and purchase of equipment, and indicated that once received, the plan should be approved within two weeks.

At the time of writing, four weeks after the planning meeting, Linda’s plan has not yet been approved. She remains at her mother’s house with no external support and the identified risks of falls and the failure of informal support are mounting.

Application of the Principles — Linda’s Story

Principle 1: A partnership approach could have seen Linda’s NDIS and health

Partners in Care | services work together as a team to develop strategies to mitigate

any potential risks and to ensure the success of Linda’s planning process, resulting in an integrated service plan to cover her disease management, rehabilitation and disability support needs.

Linda’s health and community support team worked together to provide the LAC with information that would help inform the planning process, including preparing a pre-planning document, clinical justification for equipment and modifications, and a neuropsychological report. Despite this, the LAC indicated that she had not read the document thoroughly, which impacted on her understanding of the impact of Linda’s cognitive difficulties and the particularly rapid progression of her MS.

Principle 2: The hospital team were familiar with the NDIS access process so Early completed the Access Request Form in a timely manner. Issues

identification of | relating to missing documentation were addressed quickly and

need once NDIS had the relevant paperwork, Linda’s access was

prioritised and approved by NDIS.

Principle 3: Given the complexity of Linda’s support needs and living situation,

Dedicated NDIS | an experienced NDIS planner or availability of a ‘complex planning

pathway team’ would have been invaluable.

Principle 3:

Dedicated NDIS

pathway (cont.)

Linda required a planner with experience who understood the implications of her rapidly progressing MS. Variations which could have been considered by an experienced planner, which did not sit comfortably with the less experienced LAC were a shorter plan review, the need for adjustment counselling (beyond what was available through the mental health care plan), and the need to hire equipment as required.

For Linda, having to constantly retell her story of losses was not particularly helpful to her planning experience, and even though the Alliance facilitated a multi-party approach to the planning, it was still clunky because of the separate NDIS and health services systems.

A dedicated planning pathway for participants with complex needs would have been extremely helpful for Linda and allow for a rapid approval of the plan, maintaining Linda’s motivation and hope that she will be soon be able to access the community and move beyond her mother’s back room.

Principle 4: Joint planning process

While Linda’s plan will meet her basic needs, without a joint planning approach, it will not be holistic nor provide her with the level of support that she desperately needs. It is also unlikely to be able to respond to her unpredictable and changing needs

Linda is unable to consider or articulate the scope of the support that she needs, which became apparent during the planning meeting. Linda informed the LAC that her primary goal was to “go shopping with my mum”. While this is an important goal for Linda, it did not incorporate the broader goals she provided in pre-planning which was to “be supported to continue living at home with my mum which is important to my emotional wellbeing”. Without the support of her pre-planning team, Linda’s goals and subsequent plan could have been much more limited in scope.

A joint planning approach would have enabled the planner to be more holistic and consider all aspects of Linda’s situation in her plan. In Linda’s case, she is living in the back room of her mother’s tri-level house which is cluttered and claustrophobic. She has no access to the main facilities of the home, air conditioning or heating. She has her own home that she can no longer access, as she can no longer climb the stairs. She has no capacity to commence the process of sorting out her financial

Principle 4: Joint planning process (cont.)

future, establish her entitlements, sell her home or her car. Her primary carer is elderly and is already overwhelmed by loss, so is not in a position to provide assistance in this area. Were something to happen to her mother, Linda’s entire living situation would be at risk.

A joint planning approach would incorporate all of Linda’s physical, medical, financial, housing and emotional needs and highlight the extreme stress and impact of Linda’s disability upon her life.

Linda’s plan is yet to be finalised at the time of writing, but previous conversations with the LAC have indicated that adjustment counselling or additional support worker hours to assist Linda with organisational tasks (as opposed to personal care, community access) have not been considered or included in Linda’s plan.

Principle 5:

Integrated

service implementation

In Linda’s case, an integrated service implementation approach was evident even prior to her plan being approved. The Alliance worked closely with the allied health team from Rehab in the Home, who were proactive and engaged a community OT who could commence working with Linda prior to plan approval, and maintain involvement as an NDIS provider once her plan was approved. The LAC agreed to send a copy of Linda’s plan directly to the community OT once approved, so that the plan could be actioned without delay, and the home modifications could commence ASAP.

Given the complexity of Linda’s situation, what would also have been helpful is if Linda’s selected support coordinator could have been present at the planning meeting, so that they too were familiar with the priorities in Linda’s plan, and could commence service delivery immediately upon plan approval.

While support coordination is critical to the successful implementation of Linda’s plan, the role has some significant limitations. Were the role to be broader it would be beneficial for Linda who is unable to initiate ‘thinking and planning’ about her bigger life decisions and to complete tasks such as packing up the contents of her home, and sorting out her new environment due to her physical and cognitive constraints. As Linda’s mum is overwhelmed, she is unable to support Linda with these tasks and there are no other informal supports who are available to assist.

Case Study 4 - Nathan’s Story

Background Information / History

Nathan is a 40 year old man who was admitted to hospital in August 2017 with a non compensable Spinal Cord Injury caused by an abscess. He also lives with a number of chronic disease issues.

Prior to his injury, Nathan was living temporarily with his mother to support her due to her poor health, but also because he had nowhere to live. Nathan self-reported that he has consistently made poor lifestyle choices that have got him into trouble with the law and prevented him getting his life together. One of the consequences is that he has limited education and has been long term unemployed. He is still involved in the justice system. At the time of his hospital admission he was on the Newstart Allowance.

As a result of his health issues, his acquired disability and homelessness, Nathan initiated a re-evaluation of his life. He withdrew contact with his previous circle of friends and focussed heavily on his rehabilitation to ensure he maximised his functional independence and to explore purposeful vocational and social opportunities.

Nathan has recently been discharged from hospital with formal supports. His mother has been diagnosed with terminal cancer and he has returned to live with her in her Over 55’s Office of Housing flat, so that he can offer her support.

Key Actors

e Nathan, his Mum, and his Sister ¢ Rehab inpatient health service — social work, occupational therapy, physiotherapy, nursing and medical

¢ YPINH National Alliance

¢ Support coordination agency

Regions Responsible

e NDIS region: Vic North (NEMA) ¢ DHHS region: Northern

Health Needs and Functional Impairments

Nathan presented to the hospital with fevers and foot ulcers secondary to poorly controlled Type 2 Diabetes. He was subsequently found to have an epidural abscess (T6 — 11), which resulted in an incomplete Spinal Cord Injury causing permanent leg paralysis and urinary incontinence. Nathan also had a shoulder tendon tear from a previous injury, which was exacerbated by his need to use his upper body in everyday tasks to compensate for his limited lower body movement.

Nathan is unable to walk, but can independently carry out step transfers with supervision and if the environment is set up appropriately, can do slide board transfers. Due to pain and reduced movement from the shoulder tendon tear, he is unable to self

propel in a manual wheelchair. He uses an electric wheelchair independently and safely. He needs assistance from one carer to help with washing, dressing and toileting. On admission, Nathan was obese and this impacted on his rehabilitation in hospital due to reduced movement and restrictions in propelling his manual wheelchair because of his shoulder injury.

Nathan was an inpatient in a rehab hospital for eight months. He made good gains during this time, however he has a significant residual disability and requires further adjustment to come to terms with having a permanent disability.

Timeline for NDIS Activation

13/08/2017 | Nathan was admitted to hospital.

13/11/2017 | Moved to rehab ward

30/11/2017 | Access Request Form submitted to NDIS via email. NDIS stated that they

were not received

12/12/2017 | Access Request Form re-submitted to NDIS by hospital social worker by

15/01/2018 | Nathan’s access application was confirmed as being approved by the

scheme

24/01/2018 | Social worker referred Nathan to the Alliance seeking assistance with

arranging Nathan’s planning date. The Alliance requested an urgent planning meeting for Nathan via contacts at the NDIS region. The Alliance was advised by NDIS that a planner would be in touch with the social worker to arrange a date for the planning meeting.

21/02/2018 | Nocontact from NDIS to the hospital social worker regarding Nathan’s

planning meeting. Alliance contacted NDIS regional team leader to escalate.

05/03/2018 | Alliance advised by NDIS that a planner will be allocated soon

06/03/2018 | Nathan considered medically ready for discharge. Hospital executive

putting pressure on the treating hospital team to discharge, but unable to do so without NDIS supports in place. Nathan refusing to go to residential aged care as an alternative.

10/03/2018 | Pre-planning meeting held with Nathan, the hospital social worker and

the Alliance

22/03/2018 | Planning meeting held at the hospital — Nathan, hospital social worker

and NDIS planner present

02/04/2018 | Nathan’s plan approved by NDIS

02/04/2018 | Request for service sent by NDIS planner to Nathan’s selected Support

Coordination agency

07/05/2018 | Nathan discharged from hospital

Nathan’s NDIS Pathway

Nathan’s access was approved seven weeks after the Access Request Form (ARF) was submitted to NDIS.

Nathan lived in a region where NDIS had phased well before his admission to hospital. His hospital team had experience in supporting other patients to access the scheme and were familiar with the ARF and the supporting evidence that was required.

The Access process was delayed because the NDIS stated they never received the original forms sent by email by the hospital. (The email address given on the ARF to return forms was incorrect)

Access Pre-planning Planning Implementation

The Alliance facilitated the pre-planning process. This centred on a pre-planning meeting to help Nathan think about his potential goals and the supports he would need to achieve them. The Alliance’s pre-planning tool assisted the rehab team to capture and record key information about Nathan’s functional impairments and his unmet needs.

The hospital had adapted the Alliance’s pre-planning tool to incorporate their requirements. All of the multidisciplinary team contributed to the document. The Alliance mentored the team to ensure that all of Nathan’s functional impairments and needs were captured. The pre-planning document was forwarded to the planner by the hospital in advance of the meeting.

Access Pre-planning Planning Implementation

The planning meeting took place over two months after access was approved. The regional NDIS team was contacted several times over a period of three weeks by both the hospital social worker and the Alliance to request the allocation of a planner and a date for the planning meeting. Nathan had been medically ready for discharge for some time, but was unable to be safely discharged until disability supports were in place.

The planning meeting took place at the hospital. Nathan was supported by the hospital social worker and therapists. Due to other commitments, the Alliance was unable to attend Nathan’s planning meeting, but provided mentoring to the social worker in advance of the meeting and had also discussed Nathan’s situation with the NDIS planner prior to the meeting.

Two key issues were discussed in the planning preparation. These were:

¢ Nathan’s need for exercise physiology as his obesity was directly impacting on his ability to transfer and carry out personal care activities ¢ Funding for hire of essential equipment to support Nathan’s discharge home.

The planner was open and receptive to the hospital team contacting her after the planning meeting if they were concerned that anything had been missed in the planning conversation.

The plan was approved one week after the planning meeting.

The hospital team supported Nathan to select both a support coordinator and support worker agency, the two key supports which needed to be in place prior to discharge.

Whilst Nathan was very capable of engaging in the process of choosing providers, he was living in a hospital ward, focussed on his rehabilitation as well as being new to disability so did not have the capacity to identify providers without support.

Prior to the planning meeting, the hospital social worker introduced Nathan to an organisation with whom she was familiar and who specialises in supporting people living with a spinal cord injury. Nathan attended a spinal cord injury community peer group meeting (leisure and exercise activities) and had the opportunity to talk with peers who shared their experience of living with a spinal injury and about the supports and services that were useful. Having a disability and the need for support services is a new situation for Nathan, so he was happy for his social worker to suggest appropriate service organisations. He was happy to choose the reputable organisation she suggested as they are experienced in working with people with spinal cord injuries and can provide additional non-funded supports such as peer support and other community connections.

Application of the Principles — Nathan’s Story

Principle 1: Health services are now in the process of learning about the NDIS

Partners in Care | pathway, language and processes in order to better support their

patients. It would be beneficial to the patient / participant if the NDIS could integrate into their approach an understanding of the care models and practice in the hospital system and community health.

On the whole, NDIS planners accept information if it is provided to _. them by health, but do not seek it, provide feedback or use it as an Principle 1: opportunity to commence dialogue.

Partners in Care

(cont.)

Given Nathan’s health, disability, housing and justice issues, Nathan required a truly collaborative approach from a number of service systems in order to meet his needs. This collaborative approach was not embedded in Nathan’s planning process. There is significant unmet need that cannot remain unaddressed without it impacting on the efficacy of his NDIS supports. There is no role specified for anyone to work across these various systems, which means the responses will be un-coordinated. The partnership of care needs to extend beyond pre-planning and planning and also into joint service delivery given the interactions between Nathan’s health issues and his disability supports.

Nathan’s health teams would also have benefited by a local connection with NDIS during the access and pre-planning phase. At that stage, the only contact number the team could access was the NDIS 1800 number, leading to significant delays.

Once allocated, Nathan’s planner did provide the team with her direct phone number and encouraged them to make contact if they required any clarification or had any further thoughts about additional supports that Nathan required.

Principle 2:

Early

identification of need

Having prior experience with NDIS Access requests, Nathan’s rehab team was already aware of the need to identify patients with ‘permanent and substantial’ disability early on in their stay. Feedback from the rehab team, however, indicates that there is a need for improved awareness among their colleagues in the acute team regarding the need for early identification of patients who are likely to require NDIS supports.

Nathan’s hospital is looking at integrating triggers into their admissions process and patient tracking system, ‘the journey board’ to raise awareness of NDIS. The journey board is the hospital’s electronic tool for identifying key activities and timelines during a patient’s inpatient stay.

Whilst Nathan’s Access Request Form was submitted in a timely manner, the fact that the NDIS did not receive the original forms caused delays. Hospital teams will also need to incorporate triggers for checking the progress of access requests in their processes.

Each health service will have different processes; making changes to these systems to incorporate early identification and NDIS processes will take time and commitment. Where early

identification has been incorporated by a health service, both the patient and the hospital will benefit.

Principle 3:

Dedicated NDIS

pathway

Nathan was deemed to have complex needs by the hospital and as such, the NDIS agreed that his plan should be developed by an NDIS planner. There remains no agreed definition of ‘complex’, so health services are required to negotiate with the NDIS to ensure that the allocated planner has sufficient skills and expertise in working with this cohort of people. This may change with the introduction of the Complex Participant Pathway, but the need to design a process for this to be agreed across the health system in all its variation and the NDIS is pressing.

There was no ability for the hospital to negotiate an urgent planning meeting to facilitate a speedier hospital discharge. Pressure via repeated phone calls to NDIS was required to ensure that the planning process was progressed. The social worker advocated for Nathan to remain in rehab, aware of the risks for Nathan of being discharged home without services in place, or alternatively being transferred to transition care in the interim.

A dedicated pathway would have allowed the hospital to escalate Nathan (as a patient with patients with complex needs) along the NDIS pathway. In Nathan’s case, the Alliance was able to offer some support with escalation, but his situation highlights the need for clearly defined local communication protocols and agreements between NDIS and health services.

Principle 4: Joint planning process

While hospital staff were actively engaged in Nathan’s pre planning process, they were a secondary player in the NDIS planning meeting, rather than a joint partner.

Nathan’s NDIS planner considered the comprehensive pre-planning documentation provided by the hospital and reported that it was helpful.

In the Alliance’s experience, some planners are appreciative and accepting of the hospital’s input and incorporate the goals and supports from the pre-planning document directly into the plan. Other planners don’t seem to value the hospital’s input and ignore the information despite the health team having a comprehensive understanding of the person and their new or changed situation.

In order to embed a joint planning process between health services

and NDIS, it would be helpful if clear roles and protocols were developed to clarify what role health practitioners are expected to play in supporting the NDIS access, planning and implementation processes.

Principle 5:

Integrated

service implementation

Nathan’s health service introduced him to a provider who specialises in spinal cord injury to minimise the risk of him becoming overwhelmed by choice at a time of considerable adjustment. This was in contrast to the process of scoping and selecting multiple service providers for the participant to consider.

In order to ensure the successful implementation of a patient’s plan prior to discharge, it would be beneficial to the patient / participant if health services become more familiar with the initial phases of plan implementation, particularly in relation to the selection of Support Coordination providers.

To support health services with successful implementation and more timely discharge, the Alliance has developed a tool which health services can use to guide them through the plan implementation phase. See 2.4 NDIS Implementation Guide for Health Services.

Case Study Update - Benita’s Story

In the initial phase of the project, one of the case studies presented was Benita. Her full case study is available in the interim report. We have included an update of Benita’s situation in this report as there have been a number of significant developments which were relevant to this report. A limited application of the principles has also been considered and included below.

Background Summary from Initial Case Study

Benita is a 42 year old woman who has a congenital disability (spina bifida). She lives with her elderly parents in the family home.

Benita was hospitalised in mid 2017 with renal failure and was acutely unwell for 3 months before being able to be transferred to rehab. She was discharged home in November 2017, seven months after her initial admission. On discharge from hospital Benita required two people to assist with hoist transfer. She had developed pressure areas on her heel and sacrum whilst in hospital which would need ongoing treatment from community services on her return home.

Benita was discharged home with an approved NDIS plan, which provided basic supports to meet her needs on discharge, with her parents choosing to continue to provide a significant amount of care including helping with transfers, personal care, dressing, bladder and bowel management. As described in the full case study, significant advocacy was required to ensure that Benita had appropriate wound management to dress her two pressure wounds, one of which was infected with osteo-myelitis.

Updated Scenario

Two months after Benita’s discharge and return home, her mother became unwell and was hospitalised for ten days. Benita’s mother was the second carer for all of her personal care activities. Her absence placed her personal care routine at risk.

As Benita’s discharge had taken some time to arrange following plan approval, there were sufficient unused hours in Benita’s NDIS plan to fund a second support worker three times a day while her mother was in hospital. The support workers were required to perform all of Benita’s personal care needs including emptying of her bladder via her mitrofenoff stoma. This is a role formerly completed by Benita’s mother in her capacity as the second informal support worker.

After three days of providing Benita’s full personal care requirements, the agency employing the support workers advised that their staff were not qualified to carry out the bladder management tasks as they considered this to be a medical procedure. They would not consider training the staff to undertake this care routine. The only option was for her father, who is extremity supportive, but who has historically not provided intimate personal care for his daughter, to step in and empty Benita’s bladder three times a day. This was extremely uncomfortable and stressful for both father and daughter.

Over subsequent days, six other support worker agencies were contacted by the Alliance and the Support Coordinator to see if they were able to provide both Benita’s personal care and bladder management. Five organisations stated that they were unable to do so, as bladder management was regarded as a medical / nursing procedure.

Only one provider indicated that their support workers were trained to carry out the type of bladder management Benita required. Due to difficulties recruiting a support team in Benita’s area, however, they were still unable to commence service delivery three months later.

Two major community nursing organisations were also contacted to see if they could provide both Benita’s personal care and bladder management needs. Neither service was able to assist unless Benita’s NDIS plan had a line item included for ‘Community Nursing Care’. This is not currently an option, as NDIS does not fund ongoing nursing care, stating that it is a health responsibility.

The Alliance has advised Benita’s support coordinator to request an urgent plan review to include training of support workers by a nurse, as this was not included in Benita’s original plan. The idea being that a support worker organisation may be persuaded to reconsider working with Benita if they were offered dedicated training through NDIS.

In the meantime, Benita’s mother has returned to providing bladder management support for her daughter three times a day, seven days a week. Her parents are exhausted, and are concerned that Benita may have to move to Residential Aged Care if an appropriate solution to her bladder management needs cannot be found.

A number of potential solutions have been canvassed that would work for Benita and her family. One was to get a nursing agency come in to carry out her bladder management but no nursing agency can be precise about the times they would visit, making this unviable as it is critical for this to be done when she is lying on the bed. If the nurse visit does not line up with when the support workers are washing and dressing her, the nurse could not carry out the procedure.

Another option is for the NDIS to fund nursing in the plan on the basis that it is not able to be provided through another service system, which would enable it to be rostered regularly. This would also save a number of support worker hours, making it an efficient solution. The need to be flexible is essential, particularly in this case when the clear choice of Benita and her family is to have the fewest number of people coming through their house. A review has been instigated in order to have this option considered.

Application of the Principles — Benita’s Story

Principle 1:

Partners in Care

Benita’s NDIS experience provides evidence of what can occur when there are not clear guidelines about which sector should take responsibility when the identified need crosses between both the health and disability sector.

In Benita’s case disability service providers would not take on the task of bladder management, stating that it is a ‘medical’ procedure which in their view should be funded by health. Community health did not have the capacity to visit three times daily to carry out Benita’s bladder management requirements without nursing funds being specifically allocated in her NDIS plan, clearly seeing the need as being related to her disability, rather than a health condition. The end result being that neither service accepted responsibility, creating highly unrealistic and untenable expectations of informal care upon Benita’s ageing parents.

Had health and disability been working in collaboration to provide streamlined care as indicated in the COAG agreement, Benita’s support systems — health and disability — would have been openly communicating about Benita’s situation and come to a mutual agreement about which is the most appropriate service system to deliver and /or fund her nursing care.

Principle 5:

Integrated

service implementation

Benita’s case also highlights the need for a skilled and ready workforce in order for plans to be successfully implemented. This includes:

Support coordination — Benita’s support coordinator was unable to implement Benita’s plan without a significant amount of mentoring from the Alliance. When Benita’s care situation broke down, the support coordinator did not have the experience, capacity, or knowledge to know how to resolve crises in care, highlighting a need for further training and development for support coordinators working across multiple service sectors.
Support Workers — Support organisations are clearly ill equipped to support individuals with care needs as high as Benita’s. Further consideration needs to be given to the way NDIS funds personal care for participants like Benita who require their support workers to have additional skills.

Case Study Update - Andrew’s Story

Andrew’s case study was originally presented in the project’s Interim Report. An update is included here as it illustrates the value of the first Principle of Collaboration, Partners in Care: the NDIS and the health system are partners in care working collaboratively to address the needs of people with complex health and disability support requirements

Background Summary from Initial Case Study

Andrew is a 57 year old man diagnosed with Multiple Sclerosis (MS) in 2009. A recent exacerbation of his MS affected his ability to walk and transfer safely which led to him having frequent falls, causing him to be hospitalised in April 2017.

Andrew needed support with all aspects of personal care and was hoist transferred with the assistance of two staff. He used a manual wheelchair for mobility but could only self propel for short distances. When an electric wheelchair was trialled in hospital, Andrew lacked the confidence to use it. Andrew has also experienced cognitive difficulties, chronic pain, urinary incontinence and depression.

Andrew received inpatient rehabilitation for two months before the medical team determined that he could not return home safely. A lack of appropriate alternatives at the time of discharge meant that residential aged care (RAC) was the only option considered for Andrew.

Despite having his NDIS planning meeting in December 2017, Andrew’s plan could not be finalised until an assessment for the Disability Support Pension and DHS Combined Income and Assets test was completed. While the Alliance was informed that the Combined Income and Assets form had been completed prior to Andrew’s discharge by the treating health service, this was not the case. As a result, Andrew had to self fund the Daily Accommodation Payment (DAP) until his Income and Assets test was confirmed and NDIS supports could be engaged. He also was self funding the hire of his equipment. Andrew’s existing ISP that will remain in place until the NDIS plan is approved only covers community access, not therapy or equipment.

Updated scenario

Due to the significant delays in Andrew’s application for a Disability Support Pension (DSP) and his completion of the Combined Income and Assets test, Andrew’s plan was still not approved five months after his NDIS planning meeting. This has had a number of implications for Andrew.

Financial Implications

Andrew’s DSP application was submitted to Centrelink two days after his admission to RAC in December 2017. Original estimates indicated that Andrew’s DSP application and the Combined Income and Assets test should have been assessed within a six to eight week period. In reality, the whole process took eighteen weeks and was only finalised

after the Alliance prompted Andrew’s financial advisor to make multiple complaints to Centrelink.

The delay in completing his Income and Assets assessment and in activating his NDIS plan, resulted in Andrew paying $10, 535 in Daily Accommodation Payments to the aged care provider that should have been subsidised by the NDIS, had his plan been able to be approved separately from the Income and Assets assessment. Andrew is currently in significant financial hardship and owes $12,000 in aged care fees to the nursing home.

Because of financial hardship, Andrew was forced to return his hired wheelchair, pressure cushion and lift chair following the withdrawal of funding provided through the health service’s Post Acute Care program for this equipment. He is now reliant on a borrowed wheelchair from the aged care home and as a result, is at high risk of developing pressure sores because of its unsuitability.

Functional Implications

Since moving to RAC, Andrew has lost 8 kgs and is keen to commence a physiotherapy program to assist him with his goal of stand transferring again. Due to financial hardship and also the restrictions on his ISP, Andrew has been unable to access physiotherapy or utilise his support workers with an exercise/strengthening regime. This has been frustrating for Andrew and he is at risk of further loss of function because of the delay in receiving appropriate therapy and support.

Housing Implications

While Andrew initially indicated he was happy with the move to aged care, he now wants to move out of aged care and explore community based housing options with the support of the NDIS. Andrew is currently on a waiting list for accessible accommodation but has been unable to be considered for any vacancies due to his NDIS plan still not being approved.

Application of the Principles — Andrew’s Story

Principle 1: Had Andrew’s health team been working as a partner in care with the NDIS and ensured that appropriate documentation was submitted to Centrelink in October, it is likely that Andrew would have been receipt of NDIS supports by January 2018.

Partners in Care

Had this occurred, Andrew would have been spared the significant financial and other hardships he has had to endure. He could have been considered for community based accommodation vacancies and been actively working towards meeting his functional goals at least five months earlier, resulting in optimal maintenance of his health and well being.

2.4 Escalation pathway

Part of the project brief was to develop an escalation pathway for use by health services when a participant is not progressing through the NDIS pathway in a timely manner.

Throughout the course of the project, it became apparent that without some of the key elements of collaboration and governance set in place, it is impossible to develop a true ‘escalation pathway’. For example, as things currently stand, in order for health services to escalate a patient’s need for an urgent access decision, the only option the health services has is to contact the generic 1800 NDIS phone number.

The draft escalation pathway, designed in the initial phase of the project, and attached in Appendix 4, provided health services with information about the NDIS pathway that included tips about how to navigate the system. This was shared with Monash Health and St Vincent’s Hospital and both formal and informal feedback was sought on its effectiveness.

Feedback from health services indicated that the draft escalation pathway was a useful tool and was specifically helpful for staff trying to navigate the access process. As Monash Health service was located close to the Eastern and Southern NDIS borders, there was some confusion about which regions had ‘rolled in’, and which patients would be eligible for NDIS, which patients were ‘defined’ and ‘undefined’ and the tool was particularly useful in navigating to the appropriate pathway.

Specific feedback on the tool from the health services included:

Really excellent – we really need this information presented in an easy to understand format
It would be helpful to split out the elements of the different processes into separate pathways, eg access and planning
Good to have all the information in one place
Looks good, but would be easier to follow if each pathway was defined separately
Feedback from social work staff (reported by NDIS Project Manager) is that it is helpful as an overarching process/escalation pathway. It also fits nicely with specific flowcharts developed by social work
I think it will be a really helpful tool, looking forward to receiving the final updated tools
Looks very helpful, thank you
It looks great and will be a very helpful guide • Format – bit difficult to follow the pathway -‐ each pathway as a continual line

would be easier to follow (i.e. all in landscape view)

Reduce the number of words in the boxes and/or reducing the number of boxes (i.e. overall no of steps) where possible
Include hyperlinks to relevant documents/web page, eg. NDIS webpage, access requirement, plan review template.

In response to the feedback and in consultation with the health services, we have separated the pathway into 3 individual guides, which are included in this report:

NDIS Access Guide for Health Services
NDIS Planning Guide for Health Services
NDIS Implementation Guide for Health Services

NDIS Access Guide for Health Services pin

~~ Has the area the patient lives in phased in?

On admission check that the patient meets the NDIS access requirements regarding:

age
residency
permanent and substantial disability If patient meets NDIS access

requirements, Health Service

to appoint a Key Worker and commence Access pathway.

See NDIS Phasing Schedule

“a ™

Contact DHHS Intake —

“Ne follow old process

Has the patient accessed a ‘defined’ disability program in

See NDIS ‘Defined’ Programs

the past?

a ™

With the patient present, phone NDIS to complete Verbal Access

Request. Request that Key Worker is

added as acontact. Ask for the patient’s NDIS Reference number.

Confirm that ‘Access is Met’.

Note: Sometimes individuals may be required to submit an Access Request form for Defined Programs. If so, request that this be emailed directly to key worker due to urgency. Email completed form to NAT@ndis.gov.au.

Some applicants have been asked to submit a Supporting Evidence Form even if they have been on a ‘defined’ program. If this is the case, you should advocate that this is not necessary (because they are receiving ‘defined’ supports).

With the patient present, phone NDIS to commence Access Process — state you want the initial aspects of the access process done over the phone. Ask for Key Worker to be added as a contact. Request patient’s NDIS

Reference Number. Request Supporting

Evidence Form be emailed directly to Key Worker. Alternative is post to the Health Service which has lengthy delays.

. Key Worker and Multidisciplinary team

completes Supporting Evidence Form and Access Request Form if it was unable to be completed over the phone in step 1.

. Key Worker emails completed form to

NAT@ndis.gov.au. Subject title to be clear and includes the name of the NDIS applicant and number, marked as high priority. Body of email to include a request for urgent consideration of access request due to need to discharge / need for urgent supports etc.

. Ring NDIS a few days later to confirm receipt of

access request and highlight urgency. Access should be granted within 21 days. Continue to follow up at least weekly until ‘Access is Met’.

Once NDIS Access is met, move to NDIS Planning Guide for Health Services

NDIS Planning Guide for Health Services

Has the patient been confirmed as “Access

Met”?

/™ co

Email NDIS regional office at vic[insert region] @ndis.gov.au e.g. viceast @ndis.gov.au Request planning meeting.

In subject line write ‘planning meeting in health service required’. Include the name and NDIS number of patient

Follow NDIS

Access Guide

for Health Services to determine next steps

Request that planning meeting is held with an NDIS planner, rather than a Local

Area Coordinator (LAC) due to the patient’s complexity. Some regions are more open to this than others.

Ask for contact details for the planner / LAC so you can send them the pre-planning documentation before the meeting

Commence the pre-planning

process with the patient

Pre-Planning Process

Team to work with the patient to provide the following support: il.

Key contact / team to make sure patient understands the NDIS planning process - give out info sheets / discuss.

Key contact to arrange a ‘pre-planning’ meeting with the patient / family members with relevant members of the multidisciplinary team present. At the meeting discuss what supports are required (unmet needs) and relate these to the patient’s functional impairment. Assist the patient to develop 2 to 5 goals. These goals should be broad and incorporate all aspects of the patient’s support needs.

Complete an NDIS pre-planning tool which includes information about the patient’s background; their physical, emotional, cognitive, and behavioral support needs; current equipment; funding background and unmet needs. Pre-planning tool should also incorporate the patient’s NDIS goals.

OT/PT to trial any equipment that is required. Compile any relevant SWEP applications, as well as clinical justifications, quotes for purchase and weekly hire costs for all recommended items of equipment.

Develop a daily care plan to document the patient’s realistic support needs on discharge, i.e. what care will they require in their own home, nursing home or other accommodation setting. Translate the hospital care plan into what it would look like in the home environment.

Pre-planning document, SWEP applications, equipment justifications, quotes and care plan to be emailed to planner at least 3 business days prior to the scheduled planning meeting.

Wherever possible, team member to attend the NDIS planning meeting to support the patient, provide input, discuss options etc.

Once Planning Meeting has taken place, move to

NDIS Implementation Guide for Health Services

Prior to Plan Approval

The NDIS encourages participants to have as much choice and control as possible over the supports funded in their NDIS Plan.

If discharge is dependent on the implementation of the NDIS plan, the team will need to assist the patient with selecting a support coordinator and support worker agency prior to their plan being approved.

A list of potential service providers can be found on the NDIS website. Search by type of service required, i.e. support coordination. Recommended approach is for the patient / their family to contact or interview up to 3 prospective providers to ensure the service will meet their needs.

NDIS

Development of locally specific protocols for referrals and information sharing
Agreements to work together on the key NDIS processes including access, preplanning, planning and plan implementation
Development of key working relationships across sectors, including sharing of personal contact details of key liaison staff
Early identification and support of people with complex needs
Better use of clinical input from health services and recognition of their recommendations for planning, service provision and review
Arrangements for maximising consumer and family participation in information loops and decisions
Articulated escalation pathways and agreed dispute resolution processes
An NDIS planning preparation tool developed / adopted by each health service to assist with identifying clinical and disability support need
Identification of local options for regional service development
Development and strengthening of the local / regional workforce, including planners, LACs, support coordinators etc.

Following evaluation of the engagement trial in the Vic North region with St Vincent’s Hospital, a model of regional engagement and liaison can be scaled nationally under the banner of the Complex Participant Pathway. This national engagement strategy will enable the NDIS to take account of variations in how each local health network functions.

Jurisdictional health programs must support their health networks to take up these engagement opportunities and be responsive to the policy opportunities that arise.

3.4 Provision for adaptation of NDIS core processes to complement the Complex Needs Pathway

In addition to the administrative changes proposed in the implementation of the new NDIS Complex Participant Pathway, and until the collaborative trials inform further development of the NDIS / Health interface, the NDIS should introduce greater flexibility in their core processes to ensure success of the pathway including

Allocation of experienced NDIS staff to work with people with complex health and disability needs
Making planners available to work with inpatient treating teams for pre-‐ planning liaison and discussion of the range of specific supports the NDIS is able to fund. This will assist health personnel with planning services for their patients, including arrangements for equipment, home modifications, and training of staff
Introducing a line item in the price guide to enable support coordinator to engage with inpatients with complex needs before planning and plan approval so that continuity of care, consumer and family participation and timely discharge can be facilitated
Provision of a draft plan for complex participants to assist with the individual, the health service, and their support coordinator to prepare for implementation. This process includes selection of a support provider to ensure carer training can occur prior to discharge
Support for health services to develop their knowledge of plan implementation processes including sourcing local community providers.

3.5 Health Sector Capacity Building

Throughout the course of the project, it was apparent that health service personnel have minimal knowledge of the NDIS, how it relates to them and how they can best support their patients to access and navigate the scheme. Staff are hungry for information and keen to work collaboratively with the scheme, as indicated by staff numbers attending NDIS workshops facilitated by the Alliance.

In as much as significant effort is needed to improve health personnel understanding of the NDIS, similar effort is needed to improve NDIS planners and Local Area Coordinators’ understanding and knowledge of the health system. Development opportunities are therefore needed to support NDIS and health service personnel to increase their knowledge and confidence in working across sectors. To do this

DHHS should extend the Transition Support Program to fund projects in the health sector that improve the knowledge and capacity of front line health staff and support their engagement with the NDIS; and commission initiatives that improve health services’ collaboration with the NDIS and disability service providers

NDIS pathway training should be rolled out to all health networks. This could be delivered face to face by regional NDIS staff as part of activating a regional engagement strategy – static factsheets or website only resources have proven ineffective in delivering successful cross sector outcomes and are not recommended
Each health service should be assigned an NDIS liaison officer to guide their engagement with the scheme around patients with complex needs.

APPENDICES

Appendix 1 – NDIS Planning Preparation Tool

Appendix 2 – Guide to Residential Aged Care Fees for NDIS Participants

(Draft)

Appendix 3 – Principles for Collaboration -‐ Discussion Document

Appendix 4 – Escalation Pathway for People Identified as Complex (Draft)

Appendix 1 — NDIS Planning Preparation Tool 73

We a

NDIS Planning Preparation Tool

PERSONAL DETAILS

Name: Date:

Address: Home Phone: Mobile:

NDIS Number: Written by:

People involved in preparing this document:

TYPE OF DISABILITY

(Describe the disability; when diagnosed; brief statements about it how it affects function and day to day

life)

INTRODUCTION

(Provide a brief summary about the individual - % to % page. Include a summary of their social / family background and their interests, education, and work, ie. Prior to his / her brain injury x was an active young man / woman who was ….)

NDIS Planning Preparation Tool

ABN 25 121 748 169

Appendix 1 — NDIS Planning Preparation Tool

BA RO D

Medical / Health Background

(Describe any medical, physical or mental health conditions which impact on the individual. Also include any significant hospital admissions.)

Funding Background

(Describe any funding or supports they have received or been wait listed for in the past, ie. disability, health, mental health, accommodation, case management etc.)

(Describe their family background, level of contact with family or friends, cultural background)

DD D f\

Informal Network of Supports

(Describe the individual’s support network, ie. family, friends or other informal supports and the type and frequency of support provided, if any)

Current Living Arrangements

(Describe the individual’s current living situation, ie. renting, owns own home, lives alone, lives with family, in residential aged care, in hospital, shared supported accommodation. Can the person return home? Is the property accessible, require modifications)

Current Funded Supports

(Describe the individual’s current funding situation. Do they receive any funded supports? If yes, where from and what type of support is provided, eg. ISP, Slow to Recover)

Other Health / Community Supports

(Describe any other individuals or organisations who are involved in the individual’s care, ie. GP,

Neurologist, Psychiatrist, Podiatrist / Orthotist, Optometrist, Dentist, or other.)

NDIS Planning Preparation Tool

ABN 25 121 748 169

Appendix 1 — NDIS Planning Preparation Tool

RR UNA L Add or delete headings as releva

Mobility

(Describe how the individual gets around and transfers, ie. uses manual wheelchair, four wheeled frame, single point stick, hoist)

Personal Hygiene and Activities of Daily Living

(Describe how the individual manages their personal care tasks, ie. dressing, grooming, toileting / continence)

Communication and Speech

(Describe any difficulties with communication or speech and how they impact on everyday life)

Swallowing and Nutrition Management

(Describe any specific swallowing, dietary issues, or issues with nutrition, ie. requires Enteral feeds)

Cognition

(Describe any difficulties with thinking and memory and how they impact on everyday life)

Mood and Emotions

(Describe how these impact on everyday life, ie. their confidence to access the community, engage socially with others or try new activities, or adjust to changes resulting from their disability)

Behaviour

(Describe any behaviours of concern and how these impact on everyday life, ie. accommodation options, personal care tasks, relationships with support networks)

(Describe how the person manages in the community, ie. needs carer support, transport)

NDIS Planning Preparation Tool

ABN 25 121 748 169

Appendix 1 — NDIS Planning Preparation Tool

CURRENT EQUIPMENT

(List items of equipment the individual currently has. Additional equipment needs to be included in unmet needs)

NDIS GOALS

(Provide 3-4 clear and concise goals which incorporate what the individual would like to achieve in the short and long term. These should be kept broad and relate to topics such as where they would like to live, staying independent, community involvement etc.

CONTINUITY OF SUPPORT

(Describe any funded supports the individual currently receives which will need to continue under NDIS, eg. therapy, community access, transport, Continence Assistance Program)

UNMET NEEDS

(Provide a list of supports, services or equipment which would be helpful in meeting the individual’s goals, ie. carer support to access a gym, support to source alternative housing, adjustment counselling, hoist, support coordination, plan management, transport, home modifications, independence or vocational training)

NDIS Planning Preparation Tool

ABN 25 121 748 169

Appendix 1 — NDIS Planning Preparation Tool

DAILY ROUTINE

(Provide a summary of the personal care and hygiene routine required. Include type of activity, ie. toileting, stretches, shower, dressing, and time generally required of 1:1 and 1:2 support)

Time: Assistance Required Equipment Provided by | Time

required Taken

EXAMPLE: Transfer to commode ready | Hoist 2:1 carer 10 mins

Morning for showering Tilt n Space

Commode

Wheel to shower Tilt n Space 1:1 carer 5 mins

Commode

Showering Nil Independent 5 mins

Morning

(6am to 1pm)

Afternoon

(1pm to 7pm)

Night

(7pm to 11pm)

Overnight

(11pm to 6am)

NDIS Planning Preparation Tool

ABN 25 121 748 169

Appendix 1 — NDIS Planning Preparation Tool

WEEKLY ROUTINE

(Provide a summary of the individual’s weekly routine)

Time

Activity

Time

Support Required

EXAMPLE

Monday

Tuesday

Dad visits

TAFE class

Flexible

1.00pm to 3.00pm

Nil

1:1 carer

Transport

Monday

Tuesday

Wednesday

Thursday

Friday

Saturday

Sunday

NDIS Planning Preparation Tool

ABN 25 121 748 169

Appendix 2 – Guide to Residential Aged Care for NDIS Participants 79

Guide to Residential Aged Care Fees - for NDIS participants considering moving to aged care

Moving to an Aged Care Facility is a huge decision, and one that can have significant financial implications.

Understanding your own financial situation, (including the value you have in your home, superannuation, savings and other assets) is important when considering the costs associated with having care provided in an Aged Care Facility. It is really important to understand the financial implications so you can make an informed choice about whether moving to Aged Care is right for you and what your fees are likely to be.

The My Aged Care website, www.myagedcare.gov.au provides really valuable information such as a:

Fee Estimator (Note: The Department of Human Services has a Combined Income and Assets form will be used to provide an accurate assessment of Aged Care Facility fees when you have decided to move to aged care)
Service Finder which provides links to aged care providers in your area and an estimate of their fees

The following table in conjunction with the information provided on the My Aged Care website will provide you with an idea about the various residential aged care fees and what support you will be able to obtain if you are an NDIS participant.

In order for NDIS to support you with your aged care fees, however, you or your aged care provider will need to provide NDIS with the following documentation and have your accommodation arrangements included in your NDIS plan:

Residential Aged Care Fees Letter from the Department of Human Services which relates to the Combined Income and Assets assessment
Residential or Accommodation Agreement
Care Plan / Aged Care Funding Instrument
A monthly invoice from the aged care provider Guide to Residential Aged Care Fees - for NDIS participants considering moving to aged care

Young People in Residential Aged Care National Alliance

*Information current as of 20/3/18

Appendix 2 — Guide to Residential Aged Care for NDIS Participants 80

Residential Aged Care Fees and NDIS Assistance

There are 4 types of fees that can apply in Aged Care Facilities. Some of these are means tested, and some are not applicable to NDIS participants. See below for more details.

Basic Daily Fee Pays for daily living expenses, ie. food, laundry, heating, cooling Does this apply to me? Will NDIS help me with this fee? Estimated RAC fees for NDIS participants

Yes - everyone living in aged care | No - as this fee covers daily living

has to pay this fee. expenses which are not specifictoa | $50.16 per day

Fee is set by the Department of person’s disability. Human Services at 85% of the single person pension which is currently $50.16 per day.

Means Tested Daily Care Fee Pays for day to day nursing and personal care costs

Does this apply to me? Will NDIS help me with this fee? Estimated RAC fees for NDIS participants

Not necessarily. Yes - as this fee is related to your

This fee is means tested and will | care needs. $Oyper day

be determined by the outcome of

your Combined Income and This amount will be paid omyour

Assets test. behalf by NDIS once Aged Care

Facility fees have been included in

If you do not owna home or have | yourmNDIS plan. Tip: Ask your NDIS

savings you may be considered a, | planner if this component of your

full concessional resident and will | aged care fees can be ‘plan managed’

only pay the Basic Daily Fee: so the amount is paid directly from NDIA to your Aged Care provider otherwise you will need to pay this up front and claim back from NDIA.

Fees for Extra or Additional Services Pays for higher quality accommodation, meals or other non-care services such as

hairdressing Does this apply to me? Will NDIS help me with this fee? Estimated RAC fees for NDIS participants

These are optional services No - as these are optional expenses. | Insert fee if applicable

provided by your aged care provider. Additional or extra services will be negotiated between you and the care provider.

Guide to Residential Aged Care Fees - for NDIS participants considering moving to aged care

Young People in Residential Aged Care National Alliance

*Information current as of 20/3/18

Appendix 2 — Guide to Residential Aged Care for NDIS Participants

Accommodation Payment / Charge / Fee Pays for rent and the ongoing maintenance of the aged care facility

Does this fee apply to me?

Not necessarily. This payment is means tested and will be determined by the outcome of your assessable Combined Income and Assets test. If you are required to pay an Accommodation Payment,

there are four ways of doing so:

Options for paying the Will NDIS help me with this Estimated RAC fees for NDIS Accommodation Payment fee? participants

Lump Sum Payment of a Lump Sum - either

a Refundable Accommodation

Deposit (RAD) if you are full fee paying or a Refundable

Accommodation Contribution

(RAC) if you are eligible for government assistance with your accommodation costs.

No, NDIS will not assist with the

Refundable Accommodation

Deposit or Contribution (RAD or RAC) as the amount is refundable once the individual leaves the aged care facility.

Insert Refundable Deposit

Amount as per quote from your chosen Aged Care Facility on ‘Find a Service’ Tool on My

Aged Care website

Daily Payment

Called a Daily Accommodation

Payment (DAP) if you are full fee paying or Daily Accommodation Contribution (DAC) if you are eligible for government assistance with your accommodation costs.

This amount is not refundable.

Yes, NDIS will pay up to $56.14 per day if paid by a Daily

Accommodation Payment or

Contribution (DAP or DAC)

Insert Daily Payment Amount

as per quote from your chosen Aged Care Facility on ‘Find a

Service’ Tool on My Aged Care

website minus $56.14 per day which NDIS will pay on your behalf.

*See following table for examples of costs.

Acombination of lump sum and daily payment

Refundable Accommodation

Deposit or Contribution (RAD or RAC) and Daily Accommodation Payment, or Contribution (DAP or

DAC)

NDIS will not assist with payment of the Refundable

Accommodation Deposit or

Contribution (RAD or RAC).

NDIS will pay up to $56.14 per day towards your Daily

Accommodation Payment or

Contribution (DAP or DAC) if

Insert Refundable

Accommodation Deposit or

Contribution (RAD or RAC)

and Daily Accommodation

Payment or Contribution (DAP or DAC) split as discussed in conjunction with your aged care provider minus $56.14 per day which NDIS will pay

applicable. towards your DAP or DAC.

Combination of lump sum and daily payment drawn down from lump sum

Refundable Accommodation NDIS will not assist with payment | Insert Refundable

Deposit or Contribution (RAD or | of the Refundable Accommodation Deposit or

RAC) and balance by Daily Accommodation Deposit or Contribution (RAD or RAC) Accommodation Payments or Contribution (RAD or RAC). and Daily Accommodation

Contributions (DAP or DAC) drawn down from the RAD or RAC.

(Note: the refundable lump sum will reduce over time)

NDIS will pay up to $56.14 per day towards your Daily

Accommodation Payment or

Contribution if applicable.

Payment or Contribution (DAP or DAC) split as discussed in conjunction with your aged care provider minus $56.14 per day which NDIS will pay towards your DAP or DAC.

Guide to Residential Aged Care Fees - for NDIS participants considering moving to aged care

Young People in Residential Aged Care National Alliance

*Information current as of 20/3/18

Appendix 2 — Guide to Residential Aged Care for NDIS Participants 82

Examples of Accommodation Payments - payable via lump sum or as daily fees

Shared room + shared bathroom $250,000 $39.52 $0.00

Shared room + shared bathroom $300,000 $47.42 $0.00 Shared room + ensuite $350,000 $55.33 $0.00 Single room + ensuite $400,000 $63.23 $7.09 Single room + ensuite $450,000 $71.14 $15.00 Single room + ensuite $550,000 $86.95 $30.81 Single room + ensuite $681,000 $107.65 $51.51 Single room + ensuite $700,000 $110.66 $54.52 Single room + ensuite $785,000 $124.09 $124.09 Single room + ensuite $852,000 $134.69 $78.55

Prior to moving to RAC the following steps will need to be taken:

Choose an Aged Care Provider Prior to choosing an aged care provider, it is recommended that you visit a number of facilities and consider how well they meet you needs, and if they are supportive of working with younger people. The My Aged Care website has some great suggestions about questions you should ask when considering potential providers
Obtain Financial Advice Due to the financial implications of moving to aged care, it is recommended that you obtain financial advice prior to signing any accommodation contracts. The My Aged Care website has information about where you can go to obtain advice, see www.myagedcare.gov.au/costs/finances-and-financial-advice
Income and Assets Assessment You should complete the following form: Permanent Residential Aged Care - Request for a Combined Assets and Income Assessment form (SA457). This form is available online at www.humanservices.gov.au and once assessed, will provide you with an accurate assessment of the fees you will need to pay, bearing in mind that not all assets are assessable. The Assets and Income Assessment will need to be provided to your NDIS planner in order for your accommodation costs to be incorporated into your NDIS plan.
ACAS Assessment Ask your hospital social work team for a referral to the Aged Care Assessment Service or ring My Aged Care directly on 1800 200 422 to ask for a referral to an ACAS.

Guide to Residential Aged Care Fees - for NDIS participants considering moving to aged care

Young People in Residential Aged Care National Alliance

*Information current as of 20/3/18

Appendix 3 – Principles for Collaboration – Discussion Document 83

Principles for collaboration across health services and the NDIS for supporting people with disability and complex health needs These principles have been developed with a number of Victorian health networks and reflect the need to develop a specific approach for people with complex disability and health needs. These principles are intended to guide further work on how the service systems can best collaborate to support this group of people, many of who require integrated health and disability supports. These principles are not intended to be universally applied to all NDIS participants.

There is not yet a systemic approach to collaboration between the various sectors, but in the course of the project the Alliance generated a series of ‘one off’ collaborations between health services, aged care providers and the NDIS to address the complex needs of participants. The case examples included under principles 2 to 5, highlight the need for collaboration.

Principle 1: Partners in Care The NDIS and the health system are partners in care working collaboratively to address the needs of people with complex health and disability support requirements.

The COAG NDIS Principles expect NDIS and programs. the health system to “work together at a local level to plan and coordinate streamlined In order to enable NDIS and the health system to care”. This needs to be underpinned by be authentic partners in care, the following is detailed collaboration protocols, governance required:

arrangements and cross sector relationships     •   Governance systems to enable collaboration

between the NDIS and local health networks. and accountability

This would then create the framework for the    •   Clear definitions of the role of the NDIS at

comprehensive support of people with policy and local service levels

complex needs enabling joint planning,          •   Capacity for the NDIS and health services to

consumer participation, service delivery, participate in negotiations and care coordination and review and calculation of partnerships at the local level for people with shared funding. complex needs

An agreed working definition of complexity People with complex needs by definition for this cohort of people

require integrated and coordinated services • Development and sustainability of local

from the health system, the NDIS and other service networks of health and disability service systems. The planning and service providers

delivery methods used in the collaborative                                            •   Collaborative research projects and

system must incorporate the contributions of data collection. specific health and other community

Appendix 3 — Principles for Collaboration — Discussion Document 84

Principle 2: Early identification of need Identification of disability and health support needs and engagement with the NDIS is part of initial health service assessment

The NDIS and local health networks will work to agreed protocols for early identification of people with complex needs. This will prevent people remaining in hospital beyond their expected discharge and will provide security about the provision of future supports.

In order to ensure that potential participants are identified early in admission the following is required:

¢ Identification of NDIS status as part of admission process

¢ The application of clinical judgement in needs identification and activation of NDIS pathways

¢ High levels of NDIS process knowledge by health staff (access/planning/reviews)

e NDIS accepting clinical judgements of health service staff regarding permanent and substantial disability status in rehabilitation

e Risk identification and management.

An example:

Benita is a young woman of 38 with a congenital disability who had been in hospital for 5 months with an acute infection. She developed pressure ulcers whilst in hospital. She was no longer able to self transfer and new equipment in addition to a more intense care regime was needed for her to return home. Benita had been medically stable since month 2 of her hospital stay and it was clear at that point that she met the NDIS access criteria, but the hospital did not have processes in place to initiate an NDIS access request. They were unsure about when

in Benita’s rehabilitation journey to request NDIS access and left it until she was ready for discharge despite it being clear that her functional impairment was substantial and permanent much earlier in her hospital stay.

The delay in requesting access and a lack of a priority system for access decisions being progressed delayed her discharge by 3 months.

Because of their lack of knowledge of the NDIS, the hospital were considering a referral to residential aged care.

Appendix 3 — Principles for Collaboration — Discussion Document 85

Principle 3: Dedicated NDIS pathway Dedicated access, planning and plan implementation pathways deliver integrated service responses for people with complex health and disability needs.

A dedicated administrative pathway that operates across local health services and the NDIS to enable timely access to the NDIS, joint planning, service delivery and review pathways that action protocols agreed by health and NDIS. The pathway will define the roles and responsibilities of key staff and shared governance arrangements for funding and decision making, including how individuals and families will participate in decisions.

In order to activate a dedicated access pathway for participants with complex health and disability needs the following is required:

¢ Pathways and protocols that are designed specifically for people with complex health needs and can be tailored for each local health service

¢ Clearly defined communication and decision points in health services and the NDIS at all levels

e Agreed clinical governance process to assist goal setting and measurement of goal attainment, the definition of services as health or disability services and service review process

¢ Transparent escalation points and agreed dispute resolution processes.

An example:

Benita’s circumstances are deemed “complex” because of the interaction of her health, disability and other support needs requiring concurrent integrated support from both health and disability services. The standard NDIS access/planning process did not enable the involvement of the range of local services Benita needed in the community.

To progress Benita’s application and plan, the YPINH Alliance brokered local connections with the following agencies:

¢ NDIS Planner (LAC partner)

¢ Support coordination agency

¢ Support workers agencies

¢ Community health

Dedicated pathways requiring the involvement of health and other (non disability) community services to work alongside the NDIS and the participant/family are needed. At the local level, a dedicated pathway for people with complex health needs would result in streamlined protocols and communication channels between the NDIS, health services, the participant and their families.

Appendix 3 — Principles for Collaboration — Discussion Document 86

Principle 4: Joint planning process

NDIS and the health system will engage in a joint planning process for people with disability

who have complex health needs.

Local health services and the NDIS will engage in joint planning to enable the delivery of integrated health services and disability supports to people with complex needs.

The joint planning methodology will include information sharing (e.g., written assessments, case conferences), collaborative approaches to pre-planning and planning, consumer participation and assisted decision making, funding and service responsibility and management of shared service areas such as service coordination and therapy.

In order to enable effective joint planning between the two service systems, the following needs to occur:

e Establishing a methodology that allows for the integration of interdependent clinical and disability supports in plans

¢ Definition of the role of health services in information provision, pre-planning and goal setting

e Ensuring capacity and a strong mutual working knowledge of each service system by personnel working on joint planning

¢ Clear guidelines for consumer participation in joint planning

¢ Protocols for goal setting, plan reviews data collection, reporting and accountability

¢ Protocols for agreeing funding responsibilities and managing shared functions.

An Example:

Benita needed a fully integrated support plan that detailed her wound care, equipment provision, bowel and bladder regimes, skin management and her disability support (including training). The NDIS planning methodology did not allow for an integrated plan, so the YPINH Alliance worked to include the contributions of all parties, organised the hospital team to collate their reports and evidence, negotiated community health services and mentored the support coordinator in an attempt to establish a cross-program service coordination plan. This resulted in a ‘best fit’ version of joint planning for Benita.

As there was limited focus or negotiation on how mainstream health services could integrate with NDIS supports, with much of the work of the Alliance aimed at integration after the NDIS plan was submitted. Her bladder and wound management was seen to be a purely “health responsibility”; training her disability support workers about her specific bladder and wound management was absent from her plan.

Appendix 3 — Principles for Collaboration — Discussion Document 87

Principle 5: Integrated service implementation A system of integration in service funding and delivery by the NDIS and the health system to deliver comprehensive supports to people with complex needs

Services need to be integrated to make sense to the person and to ensure that there are few or no gaps in support. This includes service design, choosing providers and a method of plan management.

In order to achieve integrated service implementation for participants with complex needs, the following needs to occur:

¢ Visibility of the integrated program service coordination service plan by the NDIS, the and reporting health system, the individual ¢ Development of local service and their family networks involving health and

¢ Development of systems that disability providers enable integration in time, place ¢ Protocols for reporting and and also for the alignment of accountability and data clinical and social goals collection

¢ Redefinition of the support ¢ Provisions for timely plan coordinator role to enable cross- adjustments and changes

While Benita’s NDIS funding package was significant for her disability supports, it did not include any resourcing for coordinating her health services with her NDIS supports, or any guidance to integrating her services to contribute to the achievement of her NDIS goals.

Community health have been dressing her wounds, but there has been no capacity for training of support worker staff by a nursing health professional regarding Benita’s specific daily positioning and pressure management requirements — her wounds have deteriorated and hospital readmission is being currently considered.

A joint plan would have detailed the joint and separate service delivery objectives and provided scope for the coordination and provision of health services alongside the disability supports. From the point of view of Benita and her family (who are not experienced service users), the integration of services to meet Benita’s needs is their minimum expectation and they are exasperated that what seems to be common sense cannot currently be easily organised. The YPINH Alliance continues to be the family’s key point of reference despite their being a support coordinator in place, because the Alliance is conversant with the health system.

Appendix 4 – Draft Escalation Pathway for People Identified as Complex 88

Complex Needs Transitioning to the NDIS

Final Report

Sector Development Fund

Project Team

Acknowledgements

Health (Caulfield Hospital), Monash Health (Dandenong Hospital and Kingston Centre),

Table of Contents

2.2.1 Health Services Learning Needs Analysis……………………………………………… 19

2.2.2 Capacity Building Workshops for Health Services Staff………………………….. 22

Appendix 1 – NDIS Planning Preparation Tool

NDIS

Working Towards a Collaborative Approach

Mandate

Service Gaps

Capacity Building

Joint Planning

High and Complex Needs, Sydney 2014

A Partnered Approach

Complexity

Funding and Other Responsibilities

Next Steps

Principle 2: Early Identification of Need

2.2 Health Service Capacity Building

2.2.1 Health Services Learning Needs Analysis

Physiotherapist

Confidence In

Navigating NDIS Plan

Processes NDIS Access Pre-planning Planning

Implementation

Table 1: Staff Confidence in Navigating NDIS Processes

Health Services Learning Needs Analysis, February 2018

Health Services Learning Needs Analysis, February 2018

2.2.2 Capacity Building Workshops for Health Services Staff

Pre and Post Access Workshop

15 Confidence Before

Confidence After

Workshop

Monash Health, Medical, Nursing and Allied Health Survey, May 2018

Stefanie, Occupational Therapist

Rhiannah, Social Worker

Whitney, Occupational Therapist

Level of Confidence with NDIS Pre-planning and Goal Setting

Pre and Post Workshop

Confidence Before

Workshop

Number

Confidence After the

Access Workshop

Monash Health Allied Health Survey, May 2018

Kate, Social worker Physiotherapist

Mandy, Occupational Therapist

Level of Confidence with NDIS Equipment Process

Pre and Post YPINH Education Session

Before the Equipment

Workshop

Number

After the Equipment

Workshop

Level of Confidence Reported

Monash Health, Allied Health Survey, May 2018

2.2.3 Mentoring Clinics

2.2.5 Capacity Building Activity Outcomes

Melbourne, Alfred Health (Caulfield Hospital), Melbourne Health and Eastern Health

Case Study 1 - Trish’s Story

Key Actors

¢ YPINH National Alliance

Regions Responsible

Health Needs and Functional Impairments

Timeline for NDIS Activation

Request Form

Trish’s NDIS Pathway

Access Pre-planning Planning Implementation

Access Pre-planning Planning Implementation

Integrated

Case Study 2: Stuart’s Story

Background Information / History

Key Actors

Royal Talbot Brain Disorders Unit

¢ YPINH National Alliance