Sector Development Fund Project Interim Report

Integrated planning for people with complex needs transitioning to the NDIS

Project Team Project Timelines

•   Jo Whitehouse, Lead, Cross Sector Reform               Project start date:         11 Sept 2017

Work plan approval date:   06 Oct 2017•   Deborah Farrell, Lead, Cross Sector Reform

Interim report date:        02 Feb 2018•   Arlene Tan, Project Officer

Final report date: 30 May 2018

Introduction ………………………………………………………………………………………………………………………………………….. 4
Case Studies ………………………………………………………………………………………………………………………………………….. 9 Case Study 1 – Sam ……………………………………………………………………………………………………………………………………………………………..10 Case Study 2 – Benita…………………………………………………………………………………………………………………………………………………………..19 Case Study 3 – Gianes ………………………………………………………………………………………………………………………………………………………….31 Case Study 4 – Bec ………………………………………………………………………………………………………………………………………………………………45 Case Study 5 – Andrew…………………………………………………………………………………………………………………………………………………………55 Case Study 6 – Chris …………………………………………………………………………………………………………………………………………………………….67 Case Study 7 – Cath……………………………………………………………………………………………………………………………………………………………..77 Case Study 8 – Mario …………………………………………………………………………………………………………………………………………………………..88
Analysis of systemic issues …………………………………………………………………………………………………………………… 101
Draft principles for collaboration…………………………………………………………………………………………………………… 114
Draft escalation Pathway for people identified as complex………………………………………………………………………… 118
Next steps …………………………………………………………………………………………………………………………………………. 124

Introduction The Commonwealth Government’s Sector Development Fund (SDF) has funded the Young People In Nursing Homes National Alliance to develop tools, resources and pathways to assist health care providers who are dealing with people with complex health and support needs transitioning to the NDIS.

The meaning of the term ‘complex’ in relation to people with disability in the NDIS is often contested, and a range of terms are used in different settings resulting in confusion about this group of people and the responses they require from service systems.

In this document, individuals with complex needs are commonly those who require services from multiple service programs such as health, mental health, aged care, housing, financial services as well as the drug and alcohol sector, as well as disability services from the NDIS. The following are factors that contribute to a definition of complexity.

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.
Placement 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.

Integrated services must be coordinated to enable effective support to be delivered to the person.

The project target group are long stay hospital patients needing integrated service planning for successful discharge. These people were all referred to the Alliance by health services.

The project’s objectives are to

a) Trial a collaborative approach to planning that

Engages the NDIS and Health Services as partners in the project
Recognises the Health Service’s expertise and capacity to deliver effective planning and plan implementation outcomes for NDIS participants with health needs requiring multi program responses.

b) Develop a Continuum of Care pathway to

Describe partner agency roles and responsibilities
Improve targeted discharge planning and care transition processes for people in hospital with multi program service needs
Ensure continuity of health service involvement post discharge
Reform NDIS planning and plan implementation activities to take account of collaboration with health services; and the inclusion of participant health needs with their disability needs in NDIS plans
Describe an escalation pathway that addresses identified risks and offers clear pathways of response. The tools and resources developed by the SDF Project will help services and practitioners develop pathways to support streamlined NDIS access, planning and service coordination that facilitate best practice health care transition to community supports.

To this end, the YPINH National Alliance is working with a number of Health Services in Victoria to deliver the project. These include St Vincent’s Hospital Melbourne, Alfred Health (Caulfield Hospital), Monash Health (Dandenong Hospital and Kingston Centre), Melbourne Heath (City and Parkville campuses) and Eastern Health (Peter James Centre).

The Alliance has worked with the respective health service teams to examine their experience of the NDIS and to analyse the experience of their patients’ transition to the scheme. This enabled us to identify key “pain points”, knowledge gaps and expectations of the NDIS.

This work involved structured and unstructured meetings, work with patients, frontline staff, team managers and senior executives.

The Alliance facilitated five workshops with health services:

Monash Health x 2 – 45 participants
St Vincent’s x 2 – 10 participants
Eastern Health – 45 participants The Alliance has also engaged in extensive mentoring and direct support for health services delivery staff working with the participants described in the case studies. We have also offered general information and advice regarding transition to the NDIS for other patients the health service has been working with. Key hospital staff the Alliance collaborated with has included social work staff, medical treating teams, nursing staff, occupational therapists, speech therapists, dieticians, mental health teams, physiotherapists, and transition care coordinators.

In conjunction with the health teams, the Alliance has worked with individuals transitioning to the NDIS and their families to help inform their understanding of the NDIS’ processes and facilitate the best outcomes for each individual. The Alliance has also provided mentoring for support coordinators in their role in supporting those with complex needs, and has also been active in developing relationships with other community and care providers.

The Alliance has established key contacts and relationships with NEMA and Eastern region NDIA and Local Area Coordination (LAC) teams as well as with the DHHS Intensive Support Team and Regional Transition Teams (Eastern and Southern Regions). These relationships have been vital to progressing individual participants’ access to the scheme.

The workshops the Alliance has facilitated, as well as the individual mentoring conversations with health service staff and the direct case work we have undertaken, has informed development of the draft principles for collaboration and escalation pathway. These will be tested and reviewed with the health services in the second half of the project.

Key deliverables in this interim report include

Eight case studies on complex patient discharges that highlight good practice; or situations where the interface is unclear; or the collaboration between the NDIS and health services could be improved.
Transition planning principles for use by health services that enhance complex discharge planning for NDIS participants with health needs who require multi program responses. These principles will be trialled in the second half of the project.
A draft escalation pathway for testing by health services to resolve any barriers or delays for patients with complex health and support needs who are transitioning to the NDIS.

Case studies

“ Young People In Nursing Homes National Alliance

Case Studies Eight case studies of people with complex health and care needs transitioning to the NDIS are included below. These case studies describe the experiences of people whose discharge from hospital or rehabilitation services was impacted by the new interface between health and disability (NDIS) services.

Case study participants were referred to the Alliance by Health services because their service delivery teams had little knowledge of the NDIS and/or they were unsure of how to engage with the scheme to ensure their patients had access to vital supports needed for successful discharge.

The participants came from four health services across five facilities that included two acute and three rehabilitation centres and had a number of different destination discharges. As example, three were discharged from hospital to their previous homes; four were discharged to Residential Aged Care and one remains an inpatient at the time of writing.

All participants have given consent for their stories to be used in de-‐identified case studies for the purpose of this project. The names, ages and in some cases the gender of the case study participants have been changed that could have acted as an identifier.

The case studies have been captured on the agreed template that details information under the following core headings:

Baseline information
Background information
Joint planning and implementation process
Ongoing risks and barriers to implementation of required supports
Outcomes. The Alliance worked with key operational staff to step them through key processes in progressing their patient’s access to the NDIS. Whilst each of the cases studies is unique and identifies patient specific challenges to planning and service implementation, they also reflect the broader systemic concerns of people with complex needs transitioning to the NDIS.

Case Study 1 – Sam Sam’s case study demonstrates that in a new NDIS roll out area, health services staff are unfamiliar with NDIS processes and the interface between health, aged care and the NDIS. This study also indicates the need for collaboration between NDIA and health services including post acute care and community health, in relation to the prescription and provision of equipment for young people moving to aged care.

Baseline information

Name: Sam

Age: 49 years Disability: Cerebral Palsy, incomplete spinal cord injury following surgery Key actors:

Sam
Family members
Local Area Coordinator (LAC)
Health Service including − Rehabilitation team − Allied health staff − Social worker − Medical staff
Sam’s Attendant Care Agency
Residential Aged Care facility staff
NDIS – Inner Gippsland (phased October 2017)
DHHS – Gippsland region
YPINH National Alliance

Background information/history Sam is a 49-‐year-‐old man with a C5/6 incomplete spinal cord injury following surgery in August 2017 related to his cerebral palsy. Prior to his surgery, Sam lived in a Supported Residential Service (SRS).

Before moving to the SRS, Sam lived in a variety of independent and supported accommodation settings since leaving the family home in his early twenties. While in the SRS, Sam had a small Individual Support Package (ISP) for community access. He was in receipt of an ISP through Disability Services in Gippsland Region for community access.

The hospital social work department referred Sam to the Alliance for support and advice around accessing the NDIS.

Health needs and functional impairments Sam’s cerebral palsy has resulted in right-‐sided hemiplegia that prevents him using a manual wheelchair. He also has a history of Type 2 diabetes, epilepsy, chronic limb pain, osteoarthritis, anxiety, hypothyroidism, depression and childhood measles encephalopathy.

Prior to his hospitalisation, Sam was able to do pivot transfers with the assistance of one carer and walk short distances using a walking frame. Following the incomplete spinal cord injury, Sam is no longer ambulant and requires an electric wheelchair to mobilise independently. He requires two person assistance with hoist transfers, repositioning in bed and all aspects of personal care.

Due to his unpredictable epilepsy and anxiety, Sam requires close monitoring while accessing the community for safety and security.

Sam is currently struggling to come to terms with the loss of his independence and reliance on a wheelchair for mobility. He has been seeing a private psychiatrist for some time for ongoing support regarding anxiety and pain as well as behaviour management strategies. At the time of writing the RAC where Sam lives has withdrawn the use of the electric chair because of the increasing frequency of Sam’s seizures.

Summary of presenting situation and involvement of person with health, aged care or other social services Sam was in hospital for surgery and rehabilitation for three months from August 2017 to November 2017.

At the time of his referral to the Alliance, Sam was medically ready for discharge. However, he had no discharge destination, as the SRS was unable to offer the increased level of support he now required, and would not take him back. Residential aged care (RAC) was considered the most likely available option.

Challenges to planning and service implementation Poor knowledge of the NDIS At the time of Sam’s hospitalisation, the NDIS had not started in the region. When it did roll out, hospital staff were unsure about how to access the NDIS or what supports might be available for a younger person considering moving to residential aged care.

As Sam already had an Individual Support Package, there was no need for him to complete the Access Request Form (ARF) or meet the NDIS evidence requirements. Hospital staff were unaware of this and had already completed the ARF unnecessarily before the Alliance became involved.

The hospital team did not understand the importance of their role in gathering and providing information to support Sam to prepare for his NDIS planning meeting. Nor did they understand what the NDIS might expect of them in the planning and plan implementation processes.

Hospital team unaware of changed processes following the transition to NDIS Prior to the arrival of the NDIS, hospitals were required to follow the Disability / Aged Care protocol where DHHS had to confirm there was no suitable supported accommodation available in the region before a referral to ACAS for permanent residential care could be made. Sam’s allied health team were unaware that this process was no longer required.

The Alliance provided an update for Sam’s treating team regarding current processes relating to NDIS and residential aged care that saved the hospital from engaging in a redundant process that could have caused lengthy delays for Sam’s discharge process.

No support available to assist Sam and his family with the transition from hospital to Aged Care As Sam’s hospital did not have a Transition Care Program, the hospital team were unable to actively support the family with selecting an appropriate aged care facility. Nor were they able to provide a full handover to the RAC provider they eventually selected, including education about behaviour management.

Previous accommodation providers had failed to successfully work with Sam’s behaviour issues meaning that his experience of these settings had been negative and the placements had failed. This meant that both these activities were critical to Sam’s successful transition to aged care. To negotiate the communication vacuum created by the support coordinator, the Alliance facilitated the interactions between the hospital and aged care service; and with Sam and his family, thereby ensuring the exchange of essential information needed to ensure the success of this move.

Prescription of equipment to be included in NDIS plan As Sam was due to be discharged to aged care, the hospital’s Occupational Therapist (OT) was reluctant to trial and prescribe the equipment Sam needed that included an electric wheelchair and a pressure cushion. The OT did not understand that Sam was ineligible for the Statewide Equipment Program (SWEP) once he became a resident of RAC. Nor did the hospital OT understand the importance of providing an appropriate prescription and quote to ensure the timely completion and implementation of an NDIS plan.

Sam required this equipment to mobilise independently and to access the community once he moved into the RAC facility. Following the Alliance’s intervention, Sam was able to provide his NDIS planner with the clinical justification and quotes needed for an electric wheelchair and pressure cushion.

Lack of flexibility in utilising Individual Support Package funding from DHHS for equipment hire As a previous client of DHHS, Sam had a small ISP. The Alliance unsuccessfully advocated to DHHS for some of the funds to be utilised for equipment hire to support Sam in the aged care facility until his NDIS plan was approved. Without access to his ISP funds, Sam had to fund his own equipment hire in the RAC following the 30 day post acute care funding period.

NDIS planning process – inexperienced personnel Sam’s plan was completed by a LAC. The LAC who undertook the planning meeting had no experience in working with people with complex needs. Because she relied solely on the NDIS online questionnaires to drive the planning meeting and did not explore the detail of Sam’s situation, the LAC failed to understand Sam’s needs fully or comprehend the key issues Sam was facing. The LAC did not coordinate the necessary interactions required from the hospital, the NDIS and the RAC to ensure a successful discharge. As a result, the Alliance had to intervene and facilitate the meeting to ensure key areas were covered.

Due to the LAC’s difficulty connecting to the internet to access NDIS online planning documents, the meeting began over an hour late and extended to nearly 3 hours. Sam’s capacity to engage with this extended planning process diminished as the meeting continued.

The Alliance was later informed by the manager in charge of the dedicated NDIS aged care planning team that LACs were not meant to be undertaking planning for young people in nursing homes. Instead, this was to be undertaken by agency planners, as the young people in nursing homes cohort was in the intensive or super intensive stream. The fact that an inexperienced LAC did undertake Sam’s planning impacted significantly on Sam and necessitated the Alliance’s remedial intervention in the planning process.

Delay in plan approval At the time of writing, 2 months after the planning meeting, Sam is still waiting for his plan to be approved. As a result, he has had to self fund his equipment hire as well as pay the full means tested accommodation fee that NDIS partially pays for in his plan, once it is approved. The failure to approve his plan in a timely manner is also holding up the supply of his customised equipment and creating increased anxiety for Sam more generally.

Lack of appropriate housing and support options Due to Sam’s experience of the breakdown of shared supported accommodation placements in the past, he was not interested in exploring shared supported accommodation. This significantly limited discharge destination options.

Joint planning and implementation process To facilitate the joint approach needed to meet Sam’s health and disability support needs at discharge, the Alliance has had to actively manage the entire planning process including, amongst others, coordinating the activities of all actors; facilitating negotiations around funding and other responsibilities; informing and mentoring key staff, as well as supporting the individual and family members with decision making relevant to their NDIS plan.

Timeline for NDIS activation Key dates: 7/9/17 Admitted to hospital for surgery. Incomplete spinal cord injury results. 9/10/17 Referred to the Alliance by the hospital social worker. 25/10/17 Meeting with Sam and his parents at the hospital to discuss the project and current issues with transition to NDIS. 31/10/17 ACAS Assessment completed. Approved for permanent residential care. 3/11/17 Meeting with Sam, his parents and potential aged care provider on site to discuss transition requirements and support available. Sam accepted the place. Plans made for Sam to move to the aged care facility. 9/11/17 Preplanning session with Sam and his parents at the hospital. 9-‐16/11/17 Liaison with hospital team, aged care facility and community supports being provided through the ISP to support the transition. 16/11/17 Sam moved to the aged care facility. 20/11/17 Preplanning document sent to LAC Planner. 23/11/17 NDIS planning meeting at the aged care facility with the Alliance, aged care staff, Sam and his family. Pending NDIS plan approval and implementation.

Participant Engagement in Planning and Implementation Decisions

Sam was very engaged in the planning process and took an active interest in choosing his accommodation provider. Sam’s preference was for a new facility that was close to his parent’s home and open to receiving visits from his pet dog.

While Sam is happy with his current accommodation and has no plans to move elsewhere, he is aware that should he change his mind in future, his plan can be reviewed to incorporate alternative housing options.

YPINH Alliance involvement

The Alliance worked with Sam and his family to explore alternative accommodation options. In the past, Sam has lived in a variety of accommodation settings including independent living with supports and multiple shared supported accommodation settings.

He was, however, interested in viewing a newly built aged care facility that was close to where his parents lived. The Alliance supported Sam and his family to view the facility, meet with the staff and discuss Sam’s support needs with them. Because Sam liked the facility and it had the capacity to support him, he decided to move there with his parents’ support.

The Alliance also provided support to hospital staff around new process requirements for people with disability. The Alliance supported Sam and his family through the transition to the NDIS including accessing the verbal ARF, preplanning, planning and set up of the implementation of the plan.

Ongoing risks and barriers to implementation of required supports Ongoing health risks to the person identified by health professionals

Given Sam’s history of depression, there is a significant risk of deterioration in Sam’s mental health resulting from premature admission to RAC.
Deterioration of Sam’s behavioural responses if his Behaviour Support Plan is not closely followed.
Accommodation breakdown may result if noted issues are not addressed appropriately. • Difficulty in engaging Sam in an exercise regime as per his goals and plan. If engagement is not possible, skin integrity and weight gain

is a potential health concern.

Timing of NDIS funding during transition

Delay in NDIS approval is placing an unreasonable financial burden on Sam, as he is required to self fund hire of essential equipment. He is also at risk of social isolation caused by not being able to move around independently in the nursing home and the wider community.

Outcomes

Areas of success and/or failure of planning and implementation (including goal attainment) Sam’s move to the residential aged care facility is at risk of failure because key supports are not in place.

The NDIS process for him has not been timely so his transition is in fact still in process.

Recommendations for resolution of presenting issues and areas requiring specific review As well as broader systemic ones that will be addressed in the analysis section of this report, specific recommendations related to Sam include:

His NDIS plan needs to be urgently approved and implemented
Engagement of a support coordinator with experience of the health and aged care systems to ensure success of the RAC placement longer term.

suotudaA13}U] qeayH Asy

auTauL],

suOTUIA.I9}U]

asuely Aay

Sam’s Timeline

49 years with Cerebral Palsy living in a Supported Residential Service with ISP for community access only (on defined program). History of mental health impacting on accommodation placements

Social work intervention Internal di: regarding possible housing Trial of equi t Serer options, None available. oe tial of equipmen Liaison with DHHS - DSR Complete NDIS Complete ri to required for NDIS Access Request ACAS (following plan. eee ars pnt pion a with Sam ue ee ) (not submitted to Sam, his parents, or Social Work Manager. SWEP) his community Referral to the Alliance

——g—–

rc Provide instructions regardin, the need for prescriptions an Attend meeting with Consider Sam’s Provide

Provide advice re. report for equipment purchase Liaison with RAG Sam, and his potential NDIS Send guidance to LAC referral to ACAS. or hire. DHHS and arp et as goals, stre 5 rere oe rrr Liaison with Sam, his r eens soy wanes community understanding interest, ie. fotnrcer Coordination, pea pci roviders re. regarding NDIS, and recreation, reports and Behaviours of Bean on Lag ISP and hire of handover support. support needs, quates to LAC Concern, ase, in Memnest percnelogice! revert equipment Facilitate handover from personal Planner Psychological “ Renin apm ites Rehab OT to RAC OT. history. Saas ’ I I I NDIS begins in region ’

_— Sector Development Fund Interim Report

ead at s s J

—n * Young People In Nursing Homes National Alliance

4 February 2018

Case Study 2 – Benita Benita’s case study demonstrates both the need for collaboration between health services and the NDIS; and for the NDIS to educate health services and other providers about the scheme’s processes regarding access to SDA housing.

Baseline information

Name: Benita

Age: 42 years Disability: Congenital disability (spina bifida) Key actors:

Benita
Benita’s parents
Rehabilitation inpatient health service

− Occupational Therapist

− Physiotherapist

Eastern Transition DHHS team
NDIS region – Inner Eastern
DHHS region – Eastern
Support for Older Carers case manager
LAC – Information Gatherer
NDIS planner
YPINH National Alliance Background information/history Benita is a 42-‐year-‐old woman who lives with a congenital disability (spina bifida). She was referred to the Alliance by a social worker at a rehabilitation hospital in the southern region of Melbourne. She lives with her supportive parents (now in their 70’s) in the family home. Despite her daily support needs, Benita has not been a user of funded services.

Health needs and functional impairments Benita lives with several significant health conditions including renal failure and (controlled) epilepsy. She was hospitalised in mid 2017 with acute renal failure. Whist an inpatient, she developed pressure areas on her heel and sacrum.

Benita requires two people to assist with hoist transfers, bed mobility, positioning, washing, dressing and bowel management. Bladder management is via Mitrofenoff catheterisation. Benita requires the help of one person to empty the catheter bag three times a day.

Benita has excellent communication skills and is able to direct her care independently. She is able to mobilise independently for short distances in her manual wheelchair. Benita also has good movement in both her arms and is able to carry out activities such as feeding herself and putting on her makeup independently.

Summary of presenting situation and involvement of person with health, aged care or other social services Prior to admission to hospital, Benita was able to self propel for short distances in her manual wheelchair and carry out personal care tasks with the assistance of one person. She was able to weight bear and do a pivot transfer with standby assistance. She could transfer to her wheelchair, bed, toilet and bath-‐board with assistance from one person. She went out regularly by herself to meet with friends and engaged in community activities like learning how to make ceramics.

At discharge, her hospital rehabilitation team felt Benita would not return to her pre-‐morbid level of independence. Despite this, Benita’s parents were resistant to the views and recommendations of the rehabilitation team, maintaining the view that, when Benita returned home, things would return to normal and they could continue providing support as before.

Their negative experience of government care systems that ‘things took too long and involved too much paperwork’, had resulted in the family accessing limited funded assistance in the past. As a result and until her hospital admission, Benita’s parents provided their daughter’s entire physical, emotional and social support with minimal assistance from disability services via a small support for older carers package.

While Benita’s parents are fit and active, they have started to have health issues of their own. A Disability Support Register (DSR) application for additional supports was submitted and approved in March 2016, prior to Benita’s hospital admission. The DSR was not, however, awarded priority status.

Benita’s parents have privately funded all of Benita’s equipment including wheelchair, electric beds etc. Until last year, they also funded all continence equipment, as they did not know about the CAPS scheme.

The hospital referred Benita to the Alliance for assistance with discharge home and access to the NDIS.

Challenges to planning and service implementation Lack of (working) knowledge of the NDIS In a region that was yet to transition to the NDIS, hospital staff admitted they had limited knowledge of the NDIS process and available supports at the time of referral. Health staff were not aware of the escalation process regarding NDIS access for people with urgent need. They had, however, completed an ARF and been told by the National Access Team that they “just had to wait”.

The hospital did seek clarification on NDIS access from DHHS via the Intake and Response team. The Department was unable to advise the hospital regarding the escalation process for decisions. Instead, DHHS suggested that staff should simply wait until the NDIA access process was completed, stating that this process should take 21 days, but that in their experience, it could take 6 to 8 weeks. The hospital staff remained unaware of the DHHS Eastern Region NDIS transition team and their role.

The Alliance was aware that while the health network’s management had received NDIS transition information from DHHS, this information had not filtered down to the campus where Benita was an inpatient and to the service delivery staff working with her.

The fact that Benita was in a hospital located in a non-‐NDIS area (Bayside) but resided in an NDIS area (East), made the process different to other out-‐of-‐region cases the hospital network had dealt with previously. As a result, there was no internal knowledge transfer about the NDIS by hospital staff.

Because Benita and her family had not been service users prior to this hospitalisation, they had limited understanding of the NDIS and few expectations about the NDIS transition and planning process. The Alliance invested heavily in detailed discussions with Benita and her family about accessing funded services and participating in the NDIS. A substantial amount of pre-‐planning input was required to ensure that Benita, her family and hospital staff could successfully engage with the NDIS planning and the plan implementation processes.

NDIS planning process Planning for Benita’s discharge was left until late in her admission, which meant that when the hospital felt she was clinically ready for discharge, NDIS supports were not set up.

Hospital staff initially saw the Alliance as an organisation that was responsible for all engagement with the NDIS. As a result, they did not fully engage in the pre-‐planning and formal planning processes initially, but left this to the Alliance to manage. Because of this, information flow was patchy at first and work with Benita’s family around her future was disjointed.

The Alliance had to undertake substantial additional work with hospital staff to ensure their active engagement with the NDIS and its processes.

Despite Benita’s complex presentation, a Local Area Coordinator (LAC) with very limited knowledge and experience of the health sector was allocated to undertake the planning. The LAC acted as the chief information gatherer, with all points of clarification having to go through the LAC rather than directly to the agency/plan builder.

During the planning process, there was never any indication of the level of supports that would be provided by the NDIS. This made discharge planning extremely difficult for the hospital staff.

Because the LAC stated that her role was to gather the information and send it back to the agency that would develop the plan, there was no room for collaborative discussions with the decision maker. The LAC stated “she was hopeful” that what Benita, her family and the hospital felt to be necessary supports, would be included in her plan.

The LAC’s inability to indicate when the plan might be approved further impacted the discharge process, significantly delaying Benita’s discharge from hospital until the plan was approved and Benita’s supports organised.

Plan implementation The inability to appoint a skilled support coordinator until the plan was approved further delayed Benita’s discharge home.

However, based on previous experience in delays in NDIS plan approvals, the Alliance started working with Benita and her family to select a support provider and workers. Even with this early intervention, there was a period of several weeks where Benita was in hospital and ready for discharge. But because the plan outcome remained unknown, the final steps of the discharge process could not be completed.

During this period, the hospital staff remained largely disengaged, seeing the Alliance as a useful (and free) resource to do much of what they should have been doing to successfully facilitate Benita’s engagement with the NDIS and her return home. As a result, the Alliance had to strike a balance between working with Benita to implement her NDIS plan and working with the hospital staff to build their capacity to manage the NDIS planning and implementation process itself.

Other factors influencing the significant delay in implementing Benita’s plan included − The hospital staff’s assumption that the NDIS would arrange and supply all the equipment Benita needed at discharge. As a result, they failed to assess and prescribe the equipment she needed to successfully return home. − Benita’s NDIS plan was done prior to scheme rollout in the health service’s region. These factors meant there was no incentive for a busy health service with limited staff and budgets to commit scarce resources to understanding and engaging with an entity (NDIS) that, at that stage, had little relevance for their daily interactions with patients.

Confirming health supports to address ongoing health issues Benita presented with a number of co-‐morbidities that interact with her disability and require ongoing input from health services. Some of these were points of contention in the discharge/NDIS planning process. As a result, the NDIS did not include this information or make reference to Benita’s health service needs in her plan.

As one example, Benita had chronic pressure ulcers requiring daily wound care to be delivered at home at the time of hospital discharge. The NDIS determined that this service was a health responsibility. But local health services that could have provided this response (including HACC PYP) stated that they had run out of funding and could not provide Benita’s wound care at home. They also argued that because Benita’s disability (sensory loss, lack of mobility) caused the wound, it was the NDIS’ responsibility to fund the wound care she required.

To prevent Benita’s discharge being delayed by further debate about who was responsible for managing her wound care, the hospital asked the family to pay for this service. Prior to scheme rollout, this service would have been carried out by post acute care and then by HACC PYP

funded nursing services. The dispute between NDIS and the health service around responsibility for wound care significantly disadvantaged Benita’s discharge itself, as well as her care post discharge.

The Alliance advocated for service access with senior DHHS staff (central office and East team) and after many weeks, HACC PYP services finally agreed to provide the wound care service. Without this advocacy, the family would have had to bear a cost that should have been borne jointly by the health service. Their lack of experience with the service system made the family particularly vulnerable to being taken advantage of with regard to the service system’s failure to deliver the supports Benita required.

Benita’s bladder management is via Mitrofenoff catheterisation. Her mother helps her to manage this, by inserting a tube through the stoma and emptying her bladder 3 times daily. Because support worker staff are not trained to carry out this procedure, Benita’s mother must be physically present to undertake this activity with Benita, morning, noon and night. Training of support worker staff by qualified health professionals to undertake this support is missing from Benita’s plan.

Benita’s other health conditions (epilepsy, renal failure) are well managed by the health system.

Managing informal supports A significant challenge with both the planning process and ongoing service delivery is the role of Benita’s parents as primary carers.

Benita and her parents have stated that the support coordinator is providing a good service and has helped get the supports up and running following discharge.

The family are, however, reluctant to provide feedback if supports are not meeting their needs. For example, they describe one of the support workers as being “slap dash”, arriving late, leaving early etc. While they have low expectations of services, they are also are very grateful for the services they are receiving and feel they have no right to complain.

Benita and her parents’ lack of experience with managing external support services and their workers represents a significant risk that the entire support process could fail. This is something that is not identified anywhere in Benita’s NDIS plan. It also failed to include a risk management strategy to address the potential for unplanned rehospitalisation post discharge that had been identified by the health service.

Additional risks attend the expectation that Benita’s parents can continue to provide a level of informal support as they get older; and a lack of capacity to address unexpected life events such as ill health or emergency situations. Five weeks after discharge, Benita’s mum became unwell, requiring hospitalisation. Benita’s dad, the care provider and her support coordinator all contacted the Alliance to seek advice about what to do to enable Benita to remain at home. The support coordinator lacked the confidence to suggest how Benita’s supports could be flexibly used to enable her to remain at home.

When questioned, the NDIS recommended that Benita use her funds ‘flexibly’ to cover any shortfall caused by a loss of informal supports. The only way this could happen is for Benita to use her community access funds to supplement her core supports. In taking this position, the NDIS is avoiding the need for a plan review necessitated by changed circumstances. As a result and under the guise of Benita “choosing” to use her funds “flexibly”, the scheme has effectively taken away Benita’s capacity to access the community, as her core support is not optional.

The NDIS and the health service should be directly involved in developing a viable risk management plan that clearly articulates how these shared risks will be managed in the future.

Joint planning and implementation process While joint planning and implementation processes are essential for scheme participants needing multi program responses, the NDIS’ planning process does not yet encourage collaboration by actors to deliver these integrated plans.

To facilitate a joint approach, the Alliance has had to actively manage the entire planning and plan implementation process including, amongst others,

Coordinating the activities of all actors;
Facilitating negotiations around funding and other responsibilities;
Informing and mentoring certain actors at appropriate times; and
Supporting the individual and family members with decision making relevant to developing an NDIS plan.

Timeline for NDIS activation Key dates: 05/2017 Benita admitted to hospital/rehabilitation. 10/2017 Hospital social worker submits ARF. 11/10/2017 Referral to the Alliance by hospital social worker. 20/10/2017 Verbal access request completed by the Alliance and Benita’s parents with National Access Team. Access verified over the phone. 20/10/2017 Eastern region transition team contacts NDIA and escalates request for urgent planning meeting. 26/10/2017 Planning meeting held with LAC. 31/10/2017 Hospital indicates its planned discharge date. 01/11/2017 NDIA eastern region rollout commences. 21/11/2017 Benita’s NDIS plan approved. 22/11/2017 Interviews of support agencies commences, facilitated by the Alliance. Three support agencies interviewed. 29/112017 Support coordination agency and support worker agency chosen. 06/12/2017 Training of carers x 4 in manual handling at hospital. 11/12/2017 Discharge from hospital to home.

Participant engagement in planning and implementation decisions Benita and her family engaged in a substantial number of planning preparation conversations facilitated by the Alliance. Together with hospital rehabilitation team representatives, they also attended planning meetings organised by the Alliance. The LAC’s poor understanding of both the health system and of Benita’s need for integrated service to address the complex interaction of her health and disability needs, meant that the LAC arranged for a planning meeting to be held at Benita’s home without Benita or her treating team present. Following the Alliance’s intervention, the planning destination was changed to take place at the hospital with Benita and her treating team.

While the hospital staff provided a written care plan and physiotherapy, occupational therapy, home visit reports and equipment lists, they needed prompting to provide this information as they were not sure what information would be helpful to the LAC.

Agreed service delivery responsibilities (service/funding split)

Program responsible Service

Health service (HACC Program for Wound care. Following significant advocacy and negotiation by the Alliance, community health Younger People) services accepts responsibility

Health service (Community Occupational and physiotherapist initially state that Benita’s very high and complex needs make it Rehabilitation) unlikely that these services will accept her. After follow up referral by the Alliance, services agree to provide care

Health service (hospital) Initial training of support workers in hoist transfers and specific positioning requirements by rehabilitation OT and nursing team.

NDIS Funding and supports as detailed in Benita’s NDIS plan

Ongoing risks and barriers to implementation of required supports Ongoing health risks to the person identified by health professionals Wound management and community nursing issues. Because 5 days service delivery is normal for wound care post discharge, post acute care (PAC) were unwilling to provide this service as there was “nowhere to refer to” after the time-‐limited PAC response ended. HACC PYP services initially refused this referral.

Sustainability of informal support While Benita’s parents are ageing, they are still providing high levels of physical and emotional support. Benita requires 2 people for all transfers and personal care management. While one carer is being funded by the NDIA, Benita’s mother is the 2nd carer for most activities. While this suits Benita’s mother in the short term and maintains her highly valued primary carer role, this arrangement is not sustainable. The failure of this informal support is a significant risk for the failure of Benita’s NDIS plan and potential rehospitalisation.

Workforce gaps/issues

Pool of support workers not readily available in new roll out area.
Support worker staff engaged needed significant levels of training from the hospital staff (6 sessions). While additional training in the specific requirements of an individual may be needed, support workers should have appropriate skills in managing hoist transfers and positioning as part of their Certificate III/IV training.
Planners (including LAC) lack experience in working with people with complex health and disability issues. They also lack knowledge of and experience with health and aged care services.
NDIS Support Coordination providers are unwilling to engage until they have received a Request for Service from the NDIA. This can cause significant delay in discharge if supports need to be set up prior to discharge.

Flexibility in NDIS packages and/or adequacy of funding While Benita’s first NDIS plan included sufficient funds to deliver the majority of her formal support needs, training of support staff by health professionals for catheterisation was missing.

Outcomes

Areas of success and/or failure of planning and implementation (including goal attainment) Benita was successful in her primary goal of returning to her family home after many months of being in hospital. Her discharge was, however, significantly delayed, primarily due to the planning and implementation processes not being responsive enough as detailed in the challenges section above.

Although she has returned home, her care regime is far from settled and will need constant vigilance to ensure her catheter care and skin integrity are maintained, and that her services are coordinated. In addition, close engagement with Benita and her parents is needed to monitor the impact of the continued personal care and day to day coordination being performed by Benita’s mother and to ensure that the presence of external services in their home does not become burdensome.

At the time of writing, the Alliance is fielding calls from Benita, her parents, the support coordinator and support workers about service provision dilemmas; Benita’s mother’s illness and the impact on care delivery; and rostering. While the Alliance has not encouraged this continued reliance, it has remained supportive and is mentoring the support coordinator where possible.

This example is indicative of the significant lack of skilled coordination and leadership in this transition period that reveals the limitations of the support coordination role as it is presently defined.

Recommendations for resolution of presenting issues and areas requiring specific review For Benita these include

Resolution regarding longer-‐term wound care and catheter management services is required. Health and the NDIS must agree on funding responsibilities, establish operational protocols and provide a guarantee of service to Benita.
Longer term planning regarding living and care arrangements for Benita. Current arrangements where her elderly parents provide the majority of her support will not be viable in the longer term.
Supporting Benita and her parents to accept funded services in order for Benita to remain at home as long as possible. Canvas the linking of Benita’s parents with Carers Victoria peer support groups to support their contact with other ageing parents living with funded services entering their homes.
Up skilling of current support coordinator (or changing support coordinator/provider) to enable Benita and her family to be proactively supported to respond to changing needs and to plan for the future.
Review of her plan to include training for support staff in Benita’s bladder management regime.

SUOTUVAIOI UO]

weap Asay

sUuI[OWIL

suonuaaA.aqU] asuerly As]

Benita’s Timeline

42 years with Spina Bifida. Mobilised with manual wheelchair until renal issues led to a hospital admission. Prior to admission she had a small package of funding designated for ‘older carers’.

Social work intervention regarding discharge and

supports required. Social worker and Liaison with DHHS cceupetionsl Transition team - On DSR therapist attend but not priority. planning meeting Established NDIS roll out with LAC dates. Referral to the Alliance:

ning 4 for PB Send preplanning Community Health parents regarding Liaison with Benita, her piecing maces planning NDIS goals, document and and DHHS regarding process of

(ian ee NDISnow that | — meetingtotake | | S7engths, areas of supporting Co interviewing and

supports, OT, PT, Registrar, VAR completed place in Rehab interest, ie. reports to LAC wound care which is selecting a SW and Psychology and eligibility seared wiki recreation, Planner not covered by NDIS. Support

confirmed. Benita and her | | Support nerds Coordinator.

parents present oa 7

I NDIS Priority Entry Granted (not in NDIS roll-out area I

—n —_— Young People In Nursing Homes National Alliance

Case Study 3 – Gianes Gianes’ case study demonstrates the need for collaboration between the NDIS, health services and service providers in supporting people with complex needs.

Baseline information

Name: Gianes

Age: 59 years Disability: Newly acquired total body paralysis following surgery Key actors:

Gianes
Family (wife and children)
DHHS Disability Client Services (DCS) Hospital Liaison
Health Service including − Rehabilitation team − Allied health staff

− Medical staff

Coordinator of Supports
Service provider
Community Health Service
NDIS – Southern region. Phasing due April 2018
DHHS – Southern region: Accepted hospital developed DSR
NDIS – Western region: Processed early entry application
NDIS – Eastern region: Took file mid review process. File was then returned to West, than approved by East team
NDIS planner
Gianes’ local MP
YPINH National Alliance

Background information/history Married and with adult children, 59 year old Gianes acquired a profound physical disability as a result of complications following elective surgery. As a result, Gianes is unable to breathe, eat or move independently.

He was a hospital inpatient for 16 months including approximately 4 months in the Intensive Care Unit (ICU).

While housing options were not considered as part of the hospital’s discharge planning process, Gianes and his family were clear that Gianes would return to live at home. They would not consider Residential Aged Care (RAC) on either a temporary or permanent basis.

Five months after his health had stabilised and he was considered ready for discharge, Gianes remained stuck in hospital. His case had been reviewed in-‐house multiple times and the hospital executive was receiving regular reports on his status. However, the absence of adequate funding to provide the personal and other supports Gianes required to live in the community; and the lack of a specialist consultant to work proactively with the family and with health and disability services/NDIS to deliver a successful discharge plan, led to Gianes’ extended stay in hospital.

Concerns about his extended length of stay resulted in the hospital approaching the Alliance for assistance.

Health needs and functional impairments Gianes’ formal diagnosis is global critical illness neuro-‐myopathy affecting movement of all four limbs, his trunk control and respiration. He has a permanent tracheostomy and is fed via a PEG gastrostomy tube.

Gianes requires three people to assist with bed mobility, positioning, hygiene and hoist transfers. He uses an attendant controlled wheelchair for mobility, but is only able to sit upright for 2 hours per day.

Gianes is unable to speak due to the style of trachea tube he uses. He has good cognition, is aware of his situation and is able to contribute to decisions. He has sufficient movement in his right arm to push a call switch and requires regular repositioning during the day and overnight to manage hygiene, pressure and comfort concerns.

Gianes has a premorbid history of depression, schizophrenia and is an insulin dependant diabetic.

Summary of presenting situation and involvement of person with health, aged care or other social services Upon referral, Gianes was a long stay hospital patient with intensive physical support needs who had not left hospital since acquiring his disability.

He was offered physiotherapy, occupational therapy, speech therapy and psychological support whilst an inpatient. The hospital team had completed a Disability Support Register (DSR) application, provided assessments, undertaken an occupational therapy home visit and designed a care plan.

The hospital had also approached DHHS for funding for Gianes’ support needs, canvassed discharge to residential aged care with the family and approached a number of nursing homes as possible discharge destinations. The lack of funding for Gianes’ support needs and absence of any alternative funding option was a key reason for his extended hospital stay.

Once engaged, the Alliance was able to

Seek regional priority status for Gianes’ DSR to enable early NDIS entry.
Raise Gianes’ planning need with the NDIS Regional Manager NEMA
Begin translation of the hospital’s care plan to address NDIS planning requirements including installation of equipment and training in its use prior to discharge

All recommended equipment was approved by NDIS, purchased and installed prior to discharge. Within the first 48 hours following discharge, the hospital occupational therapist ensured the equipment was installed correctly and following discharge and provided further training (checks) in the use of the equipment by family and carers.

Challenges to planning and service implementation Lack of working knowledge of NDIS While information about the NDIS had been delivered to management staff at the health service, it had not filtered down to operational staff.

As a result, the discharge care plan hospital staff developed for Gianes was cognisant only of the funding and other support opportunities that had existed prior to the implementation of the NDIS. Operational staff remained completely ignorant of what information they needed to provide as part of the NDIS’ planning process; what areas of care and support the NDIS would or would not fund; and what the NDIS might expect of them as part of their engagement with it.

This situation was exacerbated by

Poor information/expectation because the NDIS was not yet active in their (Southern) region
A lack of clarity by the Southern region DHHS office concerning the process for early entry to the NDIS. Gianes and his wife similarly lacked understanding of the NDIS. As a result, the Alliance undertook a range of preplanning activities to help Gianes and his family prepare for the planning and plan implementation processes.

Clarity of funding responsibilities At discharge, Gianes required a continuum of care delivered by both health and disability services. However, clarifying the respective funding and other responsibilities was not straightforward.

The Alliance facilitated a number of meetings involving hospital staff, Gianes and his family and the NDIS planner as part of the scheme’s planning process. Despite clear articulation of Gianes’ support, home modification and equipment needs, items essential to his successful discharge to the community continued to be absent from Gianes’ NDIS plan, even after a revised first plan was presented.

These items included a suctioning machine and tracheostomy consumables. Ultimately, the hospital decided to purchase the suctioning machine, as Gianes could not be discharged without one. They also agreed to fund the consumables for 6 weeks to help progress his return home. Once the supplies were used, the approximately $1,000 per month cost of the consumables shifted to the family, a cost the family cannot sustain.

There was also significant confusion about the funding of therapy by the community health service. Some of the confusion concerned delivery of speech therapy to support Gianes’ tracheostomy management. The hospital had deemed this a necessary health service that was the responsibility of community health.

However, the community health service took a position that all therapy for NDIS participants should be billed to the NDIS and was not to be provided as part of its usual service delivery. In Gianes’ case, the therapy in his plan related to other goals, such as being supported to live at home with his family, becoming more independent with mobility, being able to communicate more effectively and build his resilience so he could sit up long enough to attend his son’s wedding. The community health service’s implementation of a blanket policy made no allowance for a collaborative resolution with the NDIS.

As a result, the Alliance had to negotiate the provision of this therapy and ensure that the NDIS clarified what it would fund for the community health service. Had the Alliance not intervened, this service provided by community health would have been foregone.

Expectation of informal support A key challenge to Gianes’ successful discharge home was the NDIS’ expectation that Gianes’ wife would provide significant amounts of support, including provision of active overnight shifts and assistance with care during the day. Following determination that the scheme would not fund tracheostomy consumables and the health service lacked a budget or other capacity to fund them either, the NDIS also expected Gianes’ wife to be responsible for the cost of these items.

Gianes’ wife had her employer’s support to take 12 months unpaid leave from her job to support Gianes’ transition home. She intended returning to her full time position at the end of that time. However, her direct contribution to Gianes’ care regime (including active overnight shifts, assisting with transfers during the day), in concert with the need to oversee the care team itself, led Gianes’ wife to resign from her job.

A planner lacking health system knowledge and a full understanding of the impact of Gianes’ condition on his daily function and social participation completed Gianes’ plan. As a consequence, the planner aligned Gianes’ plan and desired outcomes with an irrelevant NDIS “reference package” that outlined the supports the scheme would provide for a person who had experienced a stroke. Because the NDIS had no other reference point for the intensity and complexity of supports Gianes required, his first NDIS plan was totally inadequate and needed immediate review.

The Alliance had substantial contact with the NDIS leading up to and following the first plan approval and review process. This included several weeks’ engagement with the NDIS’ Technical Advisory Team (TAT) that further delayed discharge. The TAT’s deliberation was purely

administrative. Its members had a very poor understanding of Gianes’ medical needs and made no contact with the hospital, with Gianes or his wife to further their understanding. As a result, the TAT’s decisions were not based on clinical reasoning, negotiation or a partnership approach.

Plan Implementation

Due to the urgency of discharge prior to formal plan approval, the Alliance initiated the selection of a support coordinator, support worker agency and the recruitment and training of workers with Gianes and his wife. Waiting for a support coordinator to be appointed and activated following plan approval would have delayed discharge by an additional 6 weeks, something that was unacceptable to Gianes, his family and the hospital. In Gianes’ case, it would have been preferable to have had a support coordinator involved in the planning and plan implementation processes from the outset.

Health monitoring and integration of health and disability supports A key challenge was to ensure that Gianes’ health was well managed on his return home and that his health needs were well recognised in his disability support plan. The NDIS Plan itself did not record the details of his health management support or how these health imperatives impacted on Gianes’ disability support services. Delivering his health and disability goals as part of an integrated service response was instead left to the Alliance to facilitate with the hospital, Gianes and his wife.

This required the Alliance to ensure that all workers were trained and competent in tracheostomy and PEG care, the therapy program was fully implemented and a contingency plan devised by the hospital team was in place, should Gianes need urgent hospitalisation.

The extent of the work the Alliance undertook, its fostering of a partnered approach to Gianes’ discharge by all actors (the health service, the support provider, support workers, the NDIS, community health and Gianes and his wife) and its continued engagement to address any problems encountered post discharge, has enabled Gianes to remain at home with no hospital admissions. The NDIS failure to recognise Gianes’ health issues in his plan was a major omission. As a result, the Alliance had to provide substantial guidance and support to the support coordinator who also lacked the health system knowledge needed to effectively coordinate both health and disability services. Because the coordination role was so poorly defined and resourced, the hospital and the Alliance had to take a lead role to ensure the disability support service plan was safely delivered.

To facilitate a joint approach, the Alliance has had to actively manage the entire planning and plan implementation process including, amongst others, coordinating the activities of all actors; facilitating negotiations around funding and other responsibilities; informing and mentoring certain actors at appropriate times; and supporting the individual and family members with decision making relevant to developing an NDIS plan.

Some elements of Gianes’ support remain unfunded at the time of writing and the Alliance has had to remain involved to support Gianes, his family and service providers with implementation of his plan; and to provide essential cross sector service coordination not available from the support coordinator or health services.

Timeline for NDIS activation Key dates: 10/2015 Gianes admitted to hospital. 10/2016 Referral to the Alliance by hospital. 11/2016 Planning meeting escalation including liaison by the Alliance with NDIS Director (NEMA). 10/11/2016 Alliance convenes a meeting with Gianes, his family and the multidisciplinary and clinical hospital teams to improve their understanding of NDIS and the responsibilities of health/NDIS. Facilitates collection of “pre-‐planning information”. 23/11/2016 Pre-‐planning information sent to planner. 28/11/2016 Initial planning meeting date. Traffic issues for the planner traveling from Geelong require the meeting to be rescheduled. 05/12/2016 Planning meeting with Western region planner. Planner advises that plan approval will be before Christmas. 12/2016 Two phone meetings with the Technical Advisory Team (TAT), the Alliance and hospital team regarding the level of supports. TAT questions the “reasonableness” of NDIA funding the level of support Gianes needs to achieve his goal of returning home. 24/12/2016 Alliance escalates the issue to NDIS executives. The TAT subsequently approves an increased funding allocation to enable safe discharge home.

25/12/2016 Planned Christmas discharge date passes – Gianes and family extremely disappointed. 12/2016 Alliance facilitates interviewing/selection of support coordinator and support provider agencies with Gianes and his wife in anticipation of plan approval. 05/01/2017 Plan approved. Plan lacks funding for some essential supports and critical capacity building activities. 5/01/2017 Alliance informs the chosen providers that Gianes’ plan has been approved. Alliance coordinates initial engagement until the support coordinator commences at the beginning of February. 16/01/2017 Support workers undergo training by hospital staff. 03/02/2017 Discharge date could not proceed because the hospital had not provided the emergency trachea training to the family. 08/02/2017 Gianes discharged from hospital. 03/2017 Alliance asks the Support Coordinator to highlight to the NDIS that a lack of funding for some support clusters has limited Gianes’ ability to achieve his goals. 05/2017 Plan review requested by the support coordinator with input from the Alliance. 21/08/2017 Plan review meeting held with West Region planner. Informed that the review would be completed within two weeks. 08/2017 Support coordinator withdraws services as she had “run out of hours”. 03/11/2017 Gianes’ wife contacts the Alliance seeking advice, as it has now been 10 weeks since the plan review meeting was held. 03/11/2017 Alliance contacts the planner and is informed the plan will be signed off that day. 09/11/2017 Plan still not approved. Alliance continues to pursue urgent approval. 08/12/2017 Alliance escalates situation to NDIS director and completes an NDIS complaint form with Gianes’ wife. Alliance continues to make multiple follow-‐up contacts with NDIA regarding progress, emphasising the need for the plan to be approved prior to Christmas to reduce the strain on Gianes and his wife. Original plan was due to expire on the 5/1/2018. 21/12/2017 Plan review approved. 01/2018 Alliance initiates introduction of new support coordinator at the request of Gianes and his partner.

Participant engagement in planning and implementation decisions Gianes and his partner were engaged in the planning and plan implementation processes from the outset and were central to ensuring Gianes was discharged successfully to his home. Gianes and his wife interviewed support providers and were involved in all aspects of the decision making process. However, these outcomes were achieved only because of the significant secondary consultation services and commitment to proactive troubleshooting post discharge that the Alliance provided.

Intensive facilitation, negotiation and coordination of response between all stakeholders was required to achieve safe discharge (including the health service, the NDIS, community health services, service providers, support coordinators and their agencies, Gianes and his wife) was required to achieve safe discharge. Examples of these critical interventions include:

Obtaining the hospital’s agreement to − Fund Gianes’ suctioning machine − Train Gianes’ support workers in the hospital setting prior to discharge − Provide some community health services on discharge − Cover the cost of hospital transport home − Establish a tracheostomy emergency management plan. This plan included liaison and agreement with Gianes’ GP to conduct home visits and provide a central communication role as required. Communication plan and contacts established with GP, hospital, Gianes and his family.
Successfully negotiating with the NDIS planner and the Technical Advisory Team to understand the necessity for a particular level of funded support to enable Gianes to successfully return home.

Ongoing risks and barriers to implementation of required supports Ongoing health risks to the person identified by health professionals

Risk of: − Tracheostomy being dislodged − Aspiration pneumonia if suctioning not carried out appropriately − PEG being dislodged − Developing skin breakdown

Changes in the formal care team may lead to care routines not being followed as required.
Mandatory regular training of care staff in the management of PEGs, tracheostomy care including suctioning, catheter management etc. Training must be undertaken every 6 months to manage these high risk interventions.
NDIS refusal to fund 24/7 care (including active overnight care 7 nights per week), resulting in high care burden being placed on informal supports and potential breakdown of these supports.
NDIS reliance on provision of informal care may cause family burnout/health collapse, which may result in Gianes’ hospital readmission and/or placement in residential aged care.
Cost of consumables is unsustainable for family who are reliant on significantly reduced income (Gianes’ DSP and his wife’s carer payment).

Engagement of competent support providers The support coordinator did not have established provider networks to connect and link Gianes and his wife to providers with expertise in supporting the intensity and complexity of Gianes’ needs. As a result, the Alliance sourced providers with these capacities for interview by Gianes and his wife and supported the decision making process to engage a care provider.

The fact that the Alliance began this process before the NDIS formally approved Gianes’ plan and saved several weeks of additional hospitalisation in the process, demonstrated that the NDIS’ current administrative process of eligibility àplanning àplan approval àplan implementation, effectively prevents any discharge procedure occurring before plan approval. Because there are times where everyone has to wait for the NDIS to make decisions, and essential activities (such as the selection of a support agency) cannot proceed until these decision are made, a high level of uncertainty becomes a defining feature of the scheme’s planning and plan implementation process.

Because it was clear that Gianes would require an agency with capacity to provide trained support workers prior to discharge, the Alliance acted to ensure that the NDIS’ final determination of the quantum of support hours did not slow down the transition process.

Workforce gaps

Extremely limited pool of support workers sufficiently trained in tracheostomy, PEG and catheter interventions to work with people with complex health and disability needs.
Endemic lack of support coordinators experienced in working with and across multiple programs to meet the needs of people requiring a multi program service response as Gianes did. The support coordination role is therefore hamstrung by the NDIS’ singular focus on disability needs only; and the scheme’s poor understanding of the mutual benefits that collaboration with other programs can deliver.
For people with dynamic needs requiring integrated multi program service responses, the support coordination role needs to be ongoing and available to activate as and when needed, once the plan is underway. A significantly different understanding of the permanence of this role and the need for substantial investment in training and mentoring processes is needed. As they are currently defined, both the support coordination and health service’s social worker roles are inadequate to provide the depth of cross system knowledge Gianes needs.
System advocate or wrangler role. To fully exercise choice and control, NDIS participants need better information about the human services options that may be available to them, before the planning process begins. A wrangler or systems advocate role is needed to support an informed decision making process for NDIS participants.

Gaps/inadequacies in NDIS first plan There were critical gaps in Gianes’ first plan that compromised its implementation. This included a failure to fund nursing hours to provide training and monitor and support carer delivery of support. Similarly, the plan did not document the intensity of support and skill level required to sustain Gianes’ care, or support ongoing liaison tasks with health services. His first plan also lacked sufficient therapy hours to enable Gianes to progress his key goals such as improved communication. Funding for essential daily consumables was also not included.

The scheme’s plan review process was completely inadequate and unable to respond to changing circumstances in a timely manner. As example, it took 7 months from submission of a plan review request to obtain the approval needed to undergo the plan review. The scheduled review of his first plan at the end of the year was delayed to the point where Gianes’ wife faced self-‐funding Gianes’ support when his plan expired. The plan was renewed without change with only two weeks to spare.

Greater continuity is needed as part of the plan review process to ensure support providers and staff do not leave in anticipation of funding cessation.

Breakdown of informal support Given the high levels of support his wife is expected to provide and the realistic day to day coordination of providers and support staff she is expected to undertake, the breakdown of informal support is a significant risk for Gianes and must be recognised and addressed in Gianes’ future NDIS plans. The role of primary carer is relentless and Gianes’ wife is already weary.

A lack of therapist hours to establish programs and train support workers has, for example, made Gianes more dependent on his wife to manage his communication.

Gianes’ NDIS plan contains no funding provision to enable his wife – his primary carer – to take a break. Unless this is addressed, Gianes and his wife face the very real risk of carer burnout and Gianes’ rehospitalisation or placement in RAC as a result.

Outcomes

Areas of success and/or failure of planning and implementation (including goal attainment) The presenting challenges in developing and implementing Gianes’ plan were many. A lack of knowledge of the scheme by health service staff combined with poor knowledge of the health system by planners; a heavy reliance on informal supports; no clarity about funding responsibilities; and a poorly equipped support coordinator, all contributed to a difficult discharge and transition to the NDIS for Gianes and his wife.

Despite the many challenges involved, Gianes’ goal of returning home was achieved, albeit with significant delay. Because the transition to a new program (NDIS) was unchartered territory for the health service, the Alliance’s leadership and cross-‐sector coordination capacity was invaluable to achieving this outcome.

Gianes has settled into a relatively consistent routine at home and has only required one very short overnight presentation to hospital related to bowel management. Because of his wife’s diligence and strong team approach, Gianes has made small gains in some areas. As example, he requires less support overnight and with transfers, needing two person assistance instead of three. His mood has also improved, he has a more positive outlook and requires less suctioning.

Recommendations for resolution of presenting issues and areas requiring specific review

Plan review to include bathroom modifications so that Gianes can use the shower for personal hygiene.
Gianes’ next plan to include more supports to provide his primary carer with regular breaks to reduce risk of carer burnout.
Provision of a support coordinator with competency in cross program interaction and negotiation and family sensitive practice.
No end date to his next plan. Gianes’ plan to be reviewed only when significant change in circumstance indicates such need.
Consumables to be fully funded to reduce financial strain on the family

Gianes’ Timeline

59 years admitted to hospital for elective surgery. Developed global critical illness neuro-myopathy affecting movement of all 4 limbs, speech and swallowing and requiring tracheostomy and PEG. Hoist transfers and attendant controlled electric wheelchair for mobility. Not previously

known to DHHS. DG > @ ; > 4 > 4 > Following NDIS Hospital staff pes cas — be iether approwel, Hoapttsl provide training Multidisciplin- , regarding suppo (iteseee for community ary team Post discharge Family indicate they would like purchase and care provider, meeting held on hospital OT Gianes to return home, Trial of installation of funding for day of discharge Fier ‘rem Hospital

Issue: not in NDIS roll out area. equipment | | equipment required suctioning || tp confirm areas ee | |e

required for for discharge. Home equipment, ial ie d service

becorengelajiedin-ero bea NDISplan || visit conductedto | | tansporthome, | Discharge a ae delive

Liaison - DSR completed. y pena family regarding a Consultation with Social Work cmace-ccelen ant ee use of Manager. Referral to the correctly installed emergency provided by OT ; — vy Vee for discharge . y __ liaison with GP —F— J L J

SUONU9AI9U]

tpeaH Avy

Day 1

Hospital

Admission for

Elective

aUuNowLy,

SUOTIUVAIIIU]

souell[y Aay

Advocacy with

NDIS Director for

consideration of priority entry. Approval given.

Completed NDIS

Access Request

form with Gianes

Facilitate above Support Gianes

meeting. Send analy in j rviewing an proton a pines! ‘ upport posted an Coordinator and quotes to NDIS care worker planner agencies

NDIS Priority Entry Granted

(not in NDIS roll-out area)

Provide

advocacy with

Suppor family | | Supportfamily | NDIS regarding Continue

Copii PP bins in engaging Paro support with new S rt delays, implement bc bho Coordination Concerns as pn of the NDIS review p ash dint woe expire

L : \ ) MS 7 ©

Case Study 4 – Bec Bec’s case study demonstrates the need for collaboration between the NDIS, health service and service providers in supporting people with complex needs.

Baseline information

Name: Bec

Age: 36 years Disability: Acquired brain injury

Key Actors

Bec
Bec’s parents
Hospital/health service including − Treating medical team − Occupational therapist − Physiotherapist − Speech therapist − Neuropsychologist − Social worker
NDIS Eastern Team Leader
NDIS Eastern Region
DHHS Eastern
NDIA planner
YPINH National Alliance

Background information/history Bec is a 36-‐year-‐old woman who was admitted to hospital in March 2017 with a hypoxic brain injury following a drug overdose and cardiac arrest. She was transferred to a rehabilitation unit in April 2017 where she remains at the time of writing. Bec was diagnosed with Schizophrenia in 2001, and Borderline Personality Disorder and anxiety in 2016. Prior to her injury in 2017 she was regularly accessing mental health services.

Bec has a history of substance use since 2001 including heroin, alcohol and prescription drugs. She has experienced approximately 10 overdoses, some of which Bec described as suicide attempts. Prior to the most recent overdose resulting in this period of hospitalisation, Bec was living with her sister and was working long hours as a florist, a profession for which she had trained a few years earlier.

Bec’s father contacted the Alliance at the suggestion of the hospital social worker, seeking support for Bec’s transition to the NDIS and alternative accommodation. Bec and her family had been advised that, given the severity of her brain injury and its impact on her memory and function, she would require 24-‐hour care in a supported accommodation setting.

Bec’s father and sister have been heavily involved in supporting and advocating for Bec. Her father has been appointed as her legal Guardian and he and Bec’s sister share the role of Financial Administrator. Bec’s father was particularly distressed by Bec’s situation. He was experiencing grief about his daughter’s brain injury and was very anxious about Bec’s potential discharge destination. He was adamant that Bec did not support a move to aged care and wanted alternative accommodation to be found. Consent had not been given for an ACAS assessment to be undertaken.

Health Needs and Functional Impairments

Due to the severity of her hypoxic brain injury, Bec experiences

Extreme difficulties with her memory and cognition
Communication impairment
Very limited short term memory
Disorientation and confusion • Adynamia -‐ Bec requires prompting with initiation at all times

Bec is able to self propel in a manual wheelchair for a few metres if prompted. She is unable to transfer without prompting due to poor initiation. Due to heightened anxiety, she lacks confidence in her ability to complete transfers and requires the assurance of a support person. Myoclonic jerks are also more prevalent during mobilisation and transfers or when anxiety or stress are present.

Bec requires prompting with all aspects of personal care. She requires a support worker to assist her to access the community due to anxiety, myoclonic jerks, poor initiation and short-‐term memory loss. A recommendation by the hospital occupational therapist has been made for an attendant propelled electric wheelchair to make community access more practical and dignified.

Bec is able to communicate, but speaks slowly. Her ability to communicate effectively is limited due to her short-‐term memory and resulting inability to recall activities, conversations or events.

Whilst an inpatient, Bec continues to receive psychological and psychiatric input regarding her schizophrenia and to support her adjustment following her brain injury.

Summary of presenting situation and involvement of person with health, aged care or other social services At the time of referral to the Alliance, Bec had been in hospital for 7 months and had not received access to the NDIA. Her father submitted access paperwork that reportedly was missing for 3 months at the NDIS, resulting in Bec’s access decision taking 4 months to be processed.

The hospital team had not completed a DSR as they had been informed by east region DHHS that DSR applications were no longer being accepted.

Once engaged, the Alliance

Advocated with NDIS regarding access and for a planning meeting to be prioritised.
Liaised with Bec, her father and sister, the health services team and the NDIS planner regarding her transition to the NDIS.
Provided information and advice regarding available accommodation options to Bec and her family.

Challenges to planning and service implementation Poor knowledge of NDIS When Bec was hospitalised, the NDIS had not yet phased in the area where she had been living. As a result, the hospital team had limited practical knowledge about the NDIS and the scheme’s transition processes. Their failure to follow up the NDIS access request resulted in a 4-‐ month delay in access being completed. Her access request was only completed when Bec’s father took responsibility for completing it. This was immensely frustrating for Bec’s family and costly for the health system, as this has increased Bec’s time in hospital significantly.

The hospital also had limited understanding of their potential role in supporting Bec in planning for an NDIS meeting, prescribing relevant equipment, and documenting required supports.

The Alliance convened several meetings to bring all parties together to help improve understanding of NDIS processes and to progress Bec’s access to the scheme. The Alliance’s input was vital to ensuring that key information was presented to the planner in advance of the planning meeting. This was a role the social worker could have undertaken if her knowledge about the scheme had been more complete.

Communication between the Alliance, the hospital and the NDIS While some hospitals have embraced the opportunity to work with the Alliance and develop their own capacity to do NDIS transition work, Bec’s hospital was less open to developing a collaborative working relationship. Once the Alliance became involved, the social worker maintained involvement and communication with Bec’s father, but withdrew from providing any of the practical support required in order to prepare Bec for her NDIS planning meeting such as facilitating the gathering of relevant assessments and reports regarding Bec’s support needs, justifications and prescriptions for equipment required, or facilitating discussions regarding Bec’s potential goals.

Had the health services team been more willing to collaborate with the Alliance on Bec’s planning preparation, there would have been further opportunities to consolidate their knowledge about the NDIS process and improve their support of other patients transitioning to the scheme.

Unrealistic expectations of the NDIS During conversations with Bec’s father, it became apparent that he had unrealistic expectations of the supports and services the NDIS could provide for his daughter. He believed, for example, that the NDIS would pay for Bec’s psychiatric appointments and provide accommodation for people who required it.

Bec’s father had also been misinformed about how to approach the planning meeting and advised to ‘ask for everything’ now, regardless of whether Bec needed the support or not. Bec’s father indicated that he had been encouraged to take this approach by a disability provider.

The Alliance spent significant time providing information about the NDIS to Bec’s father and ensuring he understood the scheme’s design and operation. Provision of information about the NDIS is something that the hospital could successfully undertake for their patients in the future.

Failure to include Supported Disability Accommodation payments (SDA) in plans The NDIS lacks a clear and transparent process for eligibility for SDA. SDA is a potentially viable accommodation solution for Bec. But because this was not included in her plan, she is unable to look to this type of accommodation if it becomes available prior to discharge.

If Bec identifies accommodation that she is interested in applying for, she must request an unscheduled plan review. The plan review process currently takes several months to activate and complete. By the time this process has been completed, it is unlikely that any property Bec is interested in will still be available. Because of their experience with Bec’s access request, Bec, her family and the hospital have lost confidence in the NDIS and its processes.

The NDIA must provide clear guidance concerning the process of including SDA eligibility in plans, including what evidence should be brought to a planning meeting to demonstrate eligibility.

Joint planning and implementation process Joint planning and implementation is not yet part of the NDIS planning process. To enable this to occur the Alliance had to coordinate the key actors, bringing relevant parties to the table at appropriate times throughout the process to ensure integrated outcomes were delivered.

Timeline for NDIS activation Key dates: 08/03/2017 Bec is admitted to hospital with a hypoxic brain injury following a drug overdose. 10/04/2017 Transfers to the ABI rehabilitation unit. 18/07/2017 Following the hospital social worker’s failure to complete NDIS access request, Bec’s father completes the process. 05/10/2017 Follow up phone call from hospital social worker to NDIA. NDIA reports they have no record of Bec’s ARF on file. 05/10/2017 Hospital social worker suggests that Bec’s dad contact the Alliance for support with accessing NDIS. 09/10/2017 NDIA confirms they have found Bec’s access request and are now processing this. 10/10/2017 Alliance meets with Bec’s father to discuss Bec’s situation, his referral and the Alliance’s potential involvement. 11/10/2017 The Alliance contacts the hospital’s social worker and proposes a team meeting be held to discuss the involvement of all actors, action to date and discharge planning considerations. 22/10/2017 Alliance provides Bec’s father and the social worker with information regarding an accommodation vacancy in the Southern region. Bec’s father (and guardian) refuses the vacancy offer as his preference is for Bec’s accommodation to be in Eastern region near her family. 25/10/17 The Alliance convenes a multidisciplinary team meeting at the hospital with Bec’s father to discuss NDIS transition and accommodation options. 01/11/2017 Eastern region transitions to NDIS. 09/11/2017 NDIS access is finally approved following numerous phone calls from Bec’s father, the Alliance and the hospital social worker. 22/11/2017 The Alliance meets with the NDIA East Team Director to discuss urgent planning needs for Bec. 24/11/2017 The NDIA contacts the Alliance to say that a planner will be allocated for Bec. 07/12/2017 The Alliance convenes a multidisciplinary team meeting with health services team to discuss NDIS planning preparation for Bec, her goals and support needs. 22/12/2017 NDIA Planning Meeting. 22/01/2018 NDIA plan approval.

Participant engagement in planning and implementation decisions Bec’s involvement in the NDIS planning process was limited by her brain injury and her impaired memory. However, her family were actively engaged and keen to pursue a plan that was in accordance with Bec’s wishes.

Bec’s father and sister met regularly with the Alliance and the hospital’s multidisciplinary team and attended Bec’s NDIS planning meeting.

Ongoing risks and barriers to implementation of required supports Ongoing health risks to the person identified by health professionals Bec’s co-‐morbid ABI and mental health issues will require close monitoring and skilled support to prevent escalation of mental health issues, onset of physical health problems (weight gain, falls related injuries etc.) and a return to substance abuse.

Future housing Bec faces a very high risk of admission to aged care if alternative community accommodation is not available and/or secured prior to hospital discharge. Any transition to alternative accommodation will need to be well planned and a careful and thorough handover provided to the new accommodation provider. Bec will require regular prompting to ensure that rehabilitation gains made in hospital can continue into the future.

Engagement of competent support providers Bec’s complex presentation requires highly competent and experienced providers with capacity to work with people with multiple disabilities and able to implement family sensitive practice. If the right providers are to be engaged and service agreements detailed to reflect Bec’s needs and preferences, this process will need to be actively and competently supported.

Workforce gaps A lack of competent support coordinators experienced in working with and across health, disability and other programs; service providers with a working knowledge and experience of the health and mental health systems and the capacity to work collaboratively with health providers to support the health/mental health needs of scheme participants; and disability providers struggling to adjust to the changed circumstances the NDIS delivers to their service offerings, continue to represent an enduring risk of service failure, rehospitalisation and/or placement in RAC for Bec and her family. The Alliance had to provide a significant amount of support to the family to overcome the hospital social worker’s lack of action regarding Bec’s application to and engagement with the NDIS.

The hospital team did not have sufficient knowledge and understanding about the NDIS’ access processes and did not undertake adequate preparation for her planning meeting with Bec. The hospital’s failure to engage proactively with the scheme is likely to have a negative impact on Bec’s NDIS plan outcome and her successful discharge from hospital. Bec’s family need a reliable reference point for information and support but at this time, it is not clear where this will or should be.

Lack of flexibility in NDIS packages and/or adequacy of funding Because Bec’s first plan is not reflective of the planning conversation held, it is not fit for purpose in planning for discharge. Her plan includes only minimal core supports for community access while Bec is in hospital, and will require a major plan review to be undertaken during the discharge planning process. The time and effort now required to create a useful plan that allows sufficient support and choice of housing, will be substantial.

The interaction of her disability and mental health impairments is a complex dynamic that not only requires ongoing support from multiple programs, but a clear service plan that integrates these various supports. At present, Bec’s NDIS plan contains no opportunity or capacity to implement an integrated approach to service delivery with other responsible programs. Bec will require a significant number of support coordination hours, as well as a highly skilled support coordinator with expertise in working with mainstream and disability programs, to create a properly integrated cross-‐program plan that coordinates the multi program service responses she needs.

Outcomes

Areas of success and/or failure of planning and implementation (including goal attainment) Bec’s transition to the NDIS, particularly with access and planning processes has been fraught with delays. These have been due to numerous factors including: − Consistent information about the NDIS (what it is and what it will fund) remaining unavailable to health services, potential scheme participants and family members − Poorly skilled support coordination − Lack of appropriate accommodation options to avoid RAC placement − NDIS plan that does not address her disability and health needs.

As a result and because her first plan does not fully meet her needs, positive outcomes for Bec have been severely limited to date.

Recommendations for resolution of presenting issues and areas requiring specific review Specific recommendations include

Review of SDA eligibility process and SDA inclusion in Bec’s plan so she is able to apply for suitable properties without further delay.
Continued work with Bec and her family to ensure that the health service remains supportive and works collaboratively with Bec’s NDIS providers to deliver the supports she needs.
An urgent NDIS plan review that delivers the quantum of support Bec require to be able to access post discharge housing and support options. Once suitable accommodation is secured, provision for staff training will need to be incorporated into the plan, to ensure the provider is aware of how to best support Bec’s needs.
Location of peer linkages for Bec’s family to provide information and support in their engagement with the NDIS and the health and mental health systems.

Bec’s Timeline

36 years admitted to hospital with a hypoxic brain injury. History of schizophrenia, borderline personality disorder, anxiety and substance use. Not previously known to disability services. Was living independently with her sister, receiving support from mental health and drug and alcohol services. Unable to return home.

Social worker

Social work, OT, PT and

I Social work intervention ! criti ‘aati is Provides recommends I OT and PT provide housing options. None evidence of Social Worker Bec’s father psychology meet _ quotes and Clinical available. disability for contacts NDIA aa ved I bie toned reciente ;

Liaison with DHHS - Now Request regarding ARF provide support | | providing input as part of her NDIS

eligible for priority entry Form with accessing into her NDIS plan g to NDIS NDIA l J 3

g = Ww w Ww ¥ |

5 ® 2 I e ¢ wn Day 211 Day 33 6 1 3 Moves to Rehab. I =} Unable to return to rs walking and ll = ’ Ri

® |

» @ PsN | ‘ y Support Bec and

her family with

| Rae ua nee planning for NDIS Continue

Meet with Bec’s father to Initiates and facilitates ts trike meeting. Input supporting Bec = discuss issues with meeting with hospital team, l jum _ pa a mee received from BA accessing NDIS. Contact and Bec’s family to discuss i sbaiay ji a eemintiene ‘inal Bec’s family, and a fs) NDIS to progress her NDIS transition and yrs ed woman “8 e her treating team implementation a = Access Request Form accommodation options I i sere 5 in hospital. and findi

© = Send ier | accommodation

— document to NDI

5 I ND

aa 1 a Bo I NDIS begins in region

Case Study 5 – Andrew Andrew’s case study demonstrates the need for collaboration between the NDIS and aged care services where younger people living in nursing homes are transitioning to NDIS. This study also reveals the need for collaboration between the NDIS and health services, including post acute care and community health services, in relation to the prescription and provision of equipment for young people moving to residential aged care from hospital or the community.

Baseline information

Name: Andrew

Age: 57 years

Disability: MS

Key actors:

Andrew
His family (wife and adult daughters)
Health service including − Medical treating team − Inpatient rehabilitation services − Physiotherapist − Occupational therapist

− Hospital Transitional Care Program

− Social worker − Nurse unit manager − Geriatrician

Multiple Sclerosis Limited: referral to Alliance
NDIS NEMA region
DHHS Northern region
NDIS – NEMA Team Leader
NDIA planner

DHHS regarding transitional funding approved for Andrew in December 2017
Support Worker Agency regarding implementation of transitional funding package.
Financial Advisor
Centrelink regarding Disability Support Pension application
Federal Department of Human Services regarding Income and Assets assessment
Residential Aged Care Facility
YPINH National Alliance Background information/history Andrew is a 57-‐year-‐old man diagnosed with Multiple Sclerosis (MS) in 2009.

From a non-‐English speaking background, Andrew lived with his wife and two adult daughters in their own home and used a four-‐wheeled frame to mobilise. Because Andrew’s wife provided all his personal care and domestic support, he was not known to disability services. While Andrew and his wife had separated in 2015, he continued to live in the family home.

A recent exacerbation of his MS affected Andrew’s ability to walk and transfer safely and led to frequent falls. Following a number of falls and development of a fever, Andrew was admitted to hospital in April 2017.

He was treated in hospital and rehabilitation for two months before the medical team determined that Andrew was not responding to treatment and recommended discharge to accessible accommodation with 24-‐hour supervision. At this point, Andrew fluctuated between being independent with transfers and requiring a one-‐person assist.

Andrew’s wife and daughters agreed that Andrew’s care needs could no longer be met at home and supported his placement in alternative accommodation as the family home has 7 steps leading to the front door and would require substantial modification to meet Andrew’s needs.

Andrew expressed a strong preference to return home with support and did not want to access residential aged care (RAC) placement.

It was determined that a return home was not feasible and a lack of appropriate alternatives at the time of discharge meant that residential aged care (RAC) was the only available option for Andrew.

In November 2017, the hospital social worker contacted Multiple Sclerosis Limited seeking community social work support for Andrew. MSL suggested that the Alliance would be better placed to provide such support and Andrew was subsequently referred to the Alliance.

The Alliance met Andrew in the Transitional Care ward in the hospital where people are placed prior to discharge to a RAC placement. The Alliance provided information and support to Andrew; advised the health services team about the NDIS and accessing NDIS supports; and provided information to Andrew and his family about aged care providers who were actively supporting younger people in their residential services.

Upon referral, the Alliance was led to believe that:

Alternative options for housing had been exhausted, including the option to return home with modifications, or to sell the family home.
Andrew was involved in the decision to move to aged care and provided his consent
Financial implications of a move to aged care had been discussed with Andrew and his wife, and both were aware of the costs and risks should Andrew’s application for a Disability Support Pension not be approved
A Combined Income and Assets form had already been submitted to DHS by the Financial Advisor recommended by the hospital social worker

This proved not to be the full story and there were gaps in the engagement by the hospital on these milestones. Andrew reluctantly moved to Residential Aged Care in December 2017.

Health Needs and Functional Impairments

Andrew requires support with all aspects of personal care and needs assistance with all transfers. He uses a manual wheelchair for mobility but can only self propel for short distances. While an electric wheelchair was trialled in hospital, Andrew lacked the confidence to use one.

Andrew’s ability to weight bear has reduced considerably with the exacerbation of his MS. He is now hoist transferred with the assistance of two staff, requires assistance for repositioning to address the risk of pressure areas and has developed contractures in his knees.

The expression of Andrew’s MS gave rise to a number of physical and cognitive impairments. In addition to his inability to walk and transfer, these include urinary incontinence, difficulties with memory, a lack of insight into his limitations, impulsivity, chronic pain and depression. The combination of these factors increased Andrew’s level of disability, reducing his independence and impacting adversely on the relationships in the family.

Due to the progressive nature of his condition and his increasing isolation, Andrew experiences low mood and frustration with his loss of independence. Since moving to RAC, he has preferred to remain in his room sitting in a recliner chair watching TV or sleeping and takes meals in his room. His inability to mobilise independently means he does not engage in any activities within the RAC.

Summary of presenting situation and involvement of person with health, aged care or other social services At the time of referral to the Alliance, Andrew had

Been in hospital for 6 months.
Undergone an ACAS assessment and been approved for permanent residential care.
Was receiving support through the Transitional Care Program (TCP) pending a move to aged care.
Visited a couple of aged care facilities being considered as discharge destinations.
Undergone a limited neuropsychological assessment.
Been referred to a financial advisor with his wife to be informed about the complexities of aged care funding and the required co-‐ contributions; and assist with completing Centrelink Assets and Income forms required for aged care placement as well as an application for a Disability Support Pension.

Prior to moving to the TCP, the hospital team had ascertained that for a range of reasons the family were unable to support Andrew at home, even with in-‐home services. The health service completed a DSR application for Shared Supported Accommodation and provided assessments.

Involvement of the Alliance Following a recommendation by Multiple Sclerosis Limited (MSL), the hospital social worker referred Andrew to the Alliance. While the social worker initially referred Andrew to MSL for support with transitioning to the NDIS and aged care, MSL indicated that, because of reduced

government funding for case management in NDIS transition areas and the fact that Andrew appeared to need more support than simple pre-‐ planning information provision, they could not assist.

Once engaged, the Alliance was able to:

Promote Andrew for priority access to the NDIS
Raise Andrew’s planning need with the NDIS Team Leader NEMA
Liaise with Andrew, the Residential Aged Care provider, NDIS planner, financial advisor, Centrelink, DHHS, housing providers and Andrew’s daughter to support Andrew during the transition to aged care and NDIS.

Challenges to planning and service implementation Health service’s lack of engagement and poor transition planning The hospital social worker and other staff were not thorough in their engagement with Andrew and his family in the transition to RAC. Even at the point of discharge, there remained considerable confusion about Andrew’s current and future financial situation, and how the management of his legal and financial affairs would be managed.

The hospital failed to arrange a full family meeting to canvas critical issues including addressing Andrew’s preference to return home, by examining the level of family support available, home modifications needed, other options including family relocation to an accessible home and Andrew’s legal and financial status in regard to alternative housing choices.

Despite having previous experience seeking early out of region entry to the NDIS with other patients, the hospital did not pursue this avenue with Andrew. As a result, alternative options for increased support and home modifications were not discussed during the discharge planning process.

Instead, the health service relied on traditional methods used in the pre NDIS disability system (including ACAS and DSR applications) rather than fully exploring options for Andrew. There was a clear lack of communication or “handover” from staff in the acute ward to those in TCP when he was transferred, resulting in lack of follow up of several critical processes, e.g. follow up of DSP and Income and Assets process.

Andrew would have benefited from a referral to an advocacy service to provide practical assistance where needed and to ensure his financial and legal interests were served throughout the discharge process.

Once the Alliance was involved, the health service reduced its involvement, seeming to assume the Alliance would take responsibility for all aspects of the discharge and transition to aged care processes.

After initiating the ACAS assessment and determining that Andrew should go to RAC, the health service failed to address several elements critical to Andrew’s successful transition. The key issue was the failure to ensure the Centrelink Assets and Income form was completed and submitted to DHS. Despite the social worker advising the Alliance that the forms had already been submitted, this proved not to be the case. The Alliance chased up the financial advisor and Andrew’s daughter who was assisting with the process and the form was finally posted to DHS 5 weeks after Andrew moved to aged care.

This delay had significant impact on Andrew’s NDIS planning process. An NDIS plan for a young person moving into a nursing home cannot be approved without completion of an Income and Assets assessment. This delay in turn resulted in Andrew having to self fund hire of a manual wheelchair, pressure cushion and recliner after the Post Acute Care program funding ceased and while he waited for his NDIS funding to start. The cost involved of $78 per week was a significant financial burden for Andrew.

Not only was RAC expressly rejected by Andrew, the desire of the hospital to discharge him and their lack of attention to key details in his discharge meant that Andrew went to RAC without an NDIS plan, had unanswered questions about his legal and financial status and needing to fund his own equipment rental.

Lack of alternative accessible accommodation Andrew reported that during a meeting, the hospital advised him with his wife present that “you need 24/7 care”, and “you need to come here [to the nursing home]”. Andrew indicated that at no stage were alternative options considered, and that he was left with no option but to move to aged care.

Andrew’s wife and daughters had indicated that returning home was not an option for Andrew, and alternative accommodation needed to be found for him. Despite Andrew indicating his preference was to go home, the hospital did not undertake an OT assessment of the family home.

The hospital did put in a DSR application for shared supported accommodation as well as an application to a disability housing organisation but nothing suitable was immediately available. The decision to place Andrew in aged care came too quickly for any other facility based option or home modification through the NDIS to be explored.

The hospital did not consider a referral to an advocate to assist in locating accommodation and ensuring Andrew’s rights were protected, was warranted. Had an advocate been appointed Andrew would have had the opportunity to ensure that his interests were represented at the hospital meetings and potentially have influenced his discharge location.

DHHS transitional funding refused to meet urgent equipment need When DHHS was advised of Andrew’s move to aged care, it indicated that “one-‐off” transition support funding previously approved for day program access, could now be used for community access.

The Alliance advocated for some of these funds to be used to hire equipment to support Andrew in the aged care facility until his NDIS plan was approved. DHHS refused this request, stating that the Statewide Equipment Program (SWEP) was responsible for statewide equipment provision, so using these funds for equipment hire constituted a “doubling up” of resources. DHHS failed to recognise that once Andrew was a resident of an aged care facility, he would be unable to access SWEP.

Without this equipment, Andrew would not be able to utilise his funding to access the community, and would be at a greater risk of developing pressure sores. In addition, the financial burden of self-‐funding the equipment hire is also untenable for Andrew.

Inflexibility of NDIS planning The NDIS approach to planning for a participant in a nursing home is inflexible and resulted in an unaffordable cost shift to Andrew for his equipment hire.

The fact that the NDIS is not able to approve a plan until the Income and Asset generated DHS fee letter has been provided, means that people in transition such as Andrew are prevented from accessing NDIS supports until a third party process has been completed. In Andrew’s case, the hospital’s failure to support Andrew’s engagement with required DHS processes meant he went to RAC without any additional supports.

Timeline for NDIS activation Key dates: 12/4/17 Andrew admitted to hospital as a result of recurrent falls and developing a fever. 20/6/17 DSR application submitted to DHHS by hospital social worker for shared supported accommodation and day program. At this time, Andrew fluctuates between independence and one-‐person assist with transfers. 19/10/17 ACAS assessment completed. 24/10/17 Andrew transfers to Transitional Care Program pending a move to aged care. 20/11/17 MSL refers Andrew to YPINH National Alliance. 27/11/17 Meeting with Andrew, hospital social worker, nurse unit manager and ward geriatrician regarding transition to NDIS and accommodation options. 4/12/17 The Alliance liaises with NDIA Team Leader regarding Andrew’s need for priority planning and his imminent move to aged care. 6/12/17 Andrew moves to RAC. 8/12/17 Application for DSP lodged with Centrelink. 12/12/17 ARF sent to NDIA. 19/12/17 NDIS Planning Meeting. Following the meeting it is apparent that Andrew has not signed an Accommodation Agreement with the Aged Care Facility. His daughter had told him that he should not sign something that could be legally binding. Following a further phone call to DHS, the Alliance discovers that, contrary to earlier reports from the hospital, the Combined Income and Assets form has not been submitted.

3/1/18 Andrew’s daughter advises that her dad has received a letter from DHHS about some funding. Andrew asks that it be used to cover hire costs once Post Acute Care service withdraws. His daughter forwards copy of letter to the Alliance for review. 4/1/18 Follow up with DHHS regarding transitional funding. Confirmed transitional funding could be used for community access: support worker and taxi vouchers only. Could not be used to pay for equipment hire. DHHS advises that letter was sent to the family home on 1/12/17 but no contact had been received from the family or Andrew regarding use of the funding. Concerns raised by DHHS regarding the effectiveness of family support. 6/1/18 Post Acute Care funding expires for hire of equipment. Family is now paying weekly hire fees of $78 for manual wheelchair, cushion and recliner chair. 8/1/18 Combined Income and Assets form finally submitted to DHS by Andrew’s daughter. 15/1/18 Meeting with Andrew at the Aged Care facility to discuss accommodation options. PENDING Outcome of application for Disability Support Pension. Confirmation of Income and Assets assessment. NDIS plan approval and implementation.

Participant engagement in planning and implementation decisions Andrew was pleased to engage in the NDIS planning process. However, because his opinions varied from day to day according to memory, mood and other influences, Andrew’s impaired decision-‐making capacity resulted in the planning process requiring significantly greater time and resourcing than anticipated.

These factors will continue to impact the NDIS plan review process going forward. Given Andrew’s inconsistent approach to his goals and, in the absence of a supportive family or appointed decision maker, it has been difficult to fully engage Andrew in either the development of his goals or their implementation.

Ongoing risks and barriers to implementation of required supports Ongoing health risks to the person identified by health professionals These include

Contractures and pressure sores resulting from non-‐compliance with implementing recommendations for pressure care.
Accommodation breakdown if Andrew is not approved for a Disability Support Pension and the family do not pay Andrew’s aged care and other bills on his behalf
Increased depression if adjustment counselling and coaching is not effective and he fails to access the community
Poor attention to comprehensive disease management in the RAC and lack of understanding of the interaction of MS symptoms by RAC staff could lead to adverse health events.

Workforce gaps The hospital team did not have sufficient knowledge and understanding of the financial ramifications of a move to Aged Care. Andrew should not have been discharged from hospital without a full understanding of RAC accommodation charges on his income and the implications for the family’s finances. The failure to pursue all options and funding sources showed a distinct lack of initiative and patient focus by the hospital.

Lack of flexibility in NDIS packages and/or adequacy of funding The refusal by the NDIS to fund personal care in addition to the ACFI reimbursement for participants in aged care will exacerbate the risk of poor care for Andrew. He will present a significant challenge to the RAC. To meet his needs comprehensively, the RAC is likely to need additional funding for time taken with Andrew for transfers, positioning, engagement and prompting.

Outcomes

Areas of success and/or failure of planning and implementation (including goal attainment) There was a catalogue of failed paperwork completion and processing issues that adversely impacted Andrew’s NDIA planning process. Concerning his DSP and Income and Assets test applications, these processes were outside the scope of the NDIA planning process, but are essential for a young person to enter RAC and access NDIS supports.

Andrew was encouraged to move to an aged care facility without other options being explored. While he was able to move from the hospital to “safe accommodation” with adequate physical care, he was not given the opportunity to consider other, potentially more suitable options.

Andrew continues to wait for approval of his NDIS plan.

Recommendations for resolution of presenting issues and areas requiring specific review Specific recommendations include

Provision of an advocate to support Andrew’s decision making regarding his accommodation and future care
DSP application needs to be finalised
Speedy approval of his NDIA plan
Organisation of a family meeting to obtain clarity about level of the family’s current and future involvement, including discussion of accommodation options

Andrew’s Timeline

57 years with Multiple Sclerosis. Not previously known to Disability Services. Was living independently in the community. Deterioration in mobility and transfers, now requiring accessible accommodation and increased services. Family have indicated that returning home is not an

option. Andrew nw aes eceeee pp peer Care —_

accomm in. Family in cate to wo r comp! etes

social worker that returning home is ACAS Multiple Sclerecls referral to the Alliance. Advises Provides discharge summaries to _ not an option even with additional Tiuitedi aid havc the Alliance that all Residential Aged Care. =) x services in place. advisor (to complete accommodation options have Prescribes Post Acute Care nd Social worker liaises with DHHS and Disability me been exhausted and income equipment required. q & completes DSR Pension oni and ansd assets test has been Provides quotes and clinical < = Income and Assets test] completed and submitted to justification fore ipment as a x Basic neuropsychological assessment ¥ DHS. required for .Oe plan a 8 comeianed Views 3 aged care facilities with = J Andrew 5 & w“

Day 251 present day smear Assets not

auy aur} L

eee ej —— — —

hia LE =, = Discuss potential referral with MSL social work Complete NDIA Access Request Support Andrew in advisor. Referral Form. Meet with Andrew at the planning meeting. Key Continued liaé 4 received from aged care facility to discuss his documents not available - oily Aniisauias Support Andrew to nw Transitional Care Support needs and potential Income and Assets form ES implement temporary ISP . Program social worker at NDIS goals. Send preplanning and Residential Fee Poem advisor funding for community “€ hospital. Provide advice document to NDIA planner. Agreement. Work with to ae access. Continue regarding NDIS and aged Provide handover to aged care Andrew, his daughter and f aaa discussions with Andrew = care, and Information facility and education regarding financial advisor to PPO around his housing goals s required to support the behavioural supports complete forms & =} planning process 8 Tt \ /

, NDIS Access Approved

—n Young People In Nursing Homes National Alliance

, February 2018

Case Study 6 – Chris Chris’ case study demonstrates the need for collaboration between health, mental health and aged care services and the NDIS. It also highlights issues related to the support coordination workforce and the latter’s poor preparation and inability to work across and within multiple service programs.

Baseline information

Name: Chris

Age: 54 years Disability: Guillain-‐Barre Syndrome; type 2 diabetes; pressure wounds; ulceration of the feet; contractures in toes and ankles; chronic pain; depression; anxiety; diagnosis of borderline personality disorder. Key actors:

Chris
Family members
Support Coordination providers (x2)
Health Service including − Rehabilitation team − Allied health staff

− Medical team − Nursing team − Mental health services − Community health services − Subacute services

Residential Aged Care Facility staff
Residential Aged Care Providers (multiple)
NDIS NEMA Region
DHHS Northern and Western Regions

YPINH National Alliance Background information/history Chris is a 54-‐year-‐old man with permanent disability following diagnosis of Guillain-‐Barre Syndrome (GBS) in July 2015. He also has a history of depression, anxiety and diagnosis of borderline personality disorder.

Chris gained a significant amount of weight while in hospital, contributed to by inactivity due to the nature of his condition and the medication he was prescribed for GBS. He now requires bariatric equipment.

Prior to acquiring his disability, Chris was living independently by himself in privately rented accommodation. However, he had been staying with his mother temporarily while he recovered from a fractured ankle. Prior to his hospitalisation, Chris was socially active with family and friends, worked in a variety of jobs, had many interests and activities and was an active community member.

Due to his residual permanent disability, Chris was unable to return to his rented accommodation. Supported accommodation or an accessible Office of Housing property were felt to be the best options for him. On discharge from hospital, Chris moved to residential aged care due to a lack of vacancies in alternative accommodation options.

Over a year later, he continues to reside in a residential care facility.

Health Needs and Functional Impairments

Functionally, Chris requires support with most activities of daily living. He uses an electric wheelchair for mobility, and requires a hoist with assistance of two carers for all transfers.

Chris has had difficulty adjusting emotionally to his disability, particularly the loss of independence and the consequent loss of his social networks and role in the community. Living in residential aged care has resulted in increased anxiety and depression for both Chris and his family. Chris’ mother in particular grieves for these losses and is upset by her son’s placement in RAC.

Secondary issues associated with his disability include type 2 diabetes, pressure wounds and ulceration of Chris’ feet due to reduced sensation and the need to wear splints because of toe and ankle contractures. Fitting the splints requires special attention and the support of one person.

Management of pain and his psychosocial disability is significant (and time intensive) in supporting Chris with his everyday care.

The intensity and complexity of his care needs requires significantly more resources than the residential aged care service can provide through the Aged Care Funding Instrument (ACFI). The need for the nursing home to divert scarce resources to Chris’ care, adversely impacts the care other RAC residents receive.

Summary of presenting situation and involvement of person with health, aged care or other social services Following a severe disease episode, Chris was in hospital for a total of 17 months, including 6 weeks in ICU. Due to his high support needs, Chris was unable to return home. Because there was no suitable alternative accommodation available, he had been advised that his only option was Residential Aged Care.

When he had been a hospital inpatient for 12 months, Chris contacted the Alliance for assistance with discharge to community accommodation. The Alliance also received requests for assistance from Chris’ family, the hospital social worker and the Office of the Public Advocate (OPA). Chris had contacted OPA himself.

Because he had been in hospital for more than 12 months and had relinquished his rented accommodation, Chris was considered homeless. He was subsequently discharged from acute care to a rehabilitation hospital in preparation for an eventual discharge to RAC.

Despite living in the Western suburbs prior to entering hospital, Chris’ homeless status and his prolonged stay in a hospital in the NEMA region enabled the Alliance to work closely with Chris and the health service team to gain NDIS access in NEMA. This extensive work with Chris, his mother and the treating medical team included preplanning and planning conversations, reviewing accommodation options, and supporting Chris with his transition to the NDIS.

While an inpatient, Chris received weekly mental health services from the hospital. Despite referrals made to mental health and community health services on discharge, there were long delays in accessing these important supports and new referrals were required from the GP and the RAC facility post hospital discharge. The Alliance played a key role in supporting these requests for new health services.

Despite multiple attempts by the GP and regular follow-‐up by the support coordinator and Chris himself, mental health services failed to provide access to much needed psychology services. After approaches from the Alliance, a referral was accepted by a behavioural psychological service. By changing some of the funding allocations in his NDIS plan, Chris was able to use his NDIS funds to pay for this service.

Chris also requires regular orthotists’ appointments. A lack of clarity around the funding needed to access this service through the hospital remains unclear for Chris and he does not currently have funding in his NDIS plan for this needed service.

Challenges to planning and service implementation

The Alliance submitted Chris’ access request during the initial NDIS NEMA roll out. It took 6 phone contacts with NDIA and 6 weeks to receive the ARF.

Further delays were experienced while this was processed. Because the hospital staff did not understand the NDIS’ administrative requirements, the Alliance took the lead in this process.

Sourcing appropriate accommodation Chris and his family were clear that residential aged care was an undesirable option for him. However, it was the only option available that could provide the physical access and supports Chris required if he was to be discharged from hospital.

The health service social worker, DHHS case manager and the Alliance worked collaboratively to complete the DSR for Supported Accommodation. This was submitted to DHHS Northern Region. Chris was presented to the vacancy panel by the Alliance and DHHS case manager in January 2017 and was eventually offered a second round SSA opportunity. However, Chris rejected the offer due to both the location and model of care that he felt were not targeted to his needs.

Although Chris’ profile was sent to multiple nursing homes, he had over 15 rejections (some based on his ACFI profile), before finding a facility in the western region. He was turned down mostly due to his need for bariatric support and because he was a smoker.

The Alliance worked with the Transition Care Program at the hospital to negotiate and facilitate this transition to RAC, visiting 11 facilities with Chris in the process.

Due to his complex presentation (psychosocial disability, high physical support needs and rigid behaviour), significant support was required to ensure a smooth transition for Chris to his new accommodation. Neither the hospital nor the RAC facility could manage this without the Alliance’s intensive intervention, which entailed NDIS liaison, locating providers, mentoring support coordinators and orienting and training the RAC staff.

Inadequate NDIS planning process Despite his engagement in the planning process, Chris lacked insight into the extent and intensity of his support needs. He presented as someone who had a greater capacity to initiate and complete tasks, to plan, coordinate and communicate his needs than he was capable of.

He required a range of linked supports from different sectors (housing, mental health, community health and primary care) that were not integrated in his NDIS plan. Despite the vexed transition to RAC being an immediate priority, the focus of support coordination was not made clear and the means of securing services from mainstream programs was also unstated.

The hospital’s transition coordinator participated in Chris’ NDIS planning meeting as it was anticipated that Chris would move to residential age care as an interim step. NDIS planning was completed early in the NEMA roll out and, despite being actively engaged in the lead up to the meeting, the hospital team were still naïve about the NDIS, the support it might offer Chris and their role in delivering an appropriate outcome with the scheme.

The NDIS planner’s poor understanding of both the hospital’s capacities and the age care service’s responsibilities, resulted in Chris’ plan failing to include the equipment he needed. For example, Chris was not funded for the hire of a bariatric king size bed and air mattress or an occupational therapy assessment for purchase of this equipment. This was assumed or considered the responsibility of the aged care provider.

Once the 30 day hire funded by the health service was completed, the cost of equipment hire became Chris’ responsibility at a time when he was already experiencing severe financial hardship.

Inadequate Support Coordination

Chris initially engaged a mental health service to provide NDIS funded support coordination. Despite the support coordinator participating in an extensive transition planning handover by the hospital psychologist and psychiatrist regarding Chris’ mental health support needs, the worker unfortunately ceased working with Chris on the day of his move. There was a substantial wait for another support coordinator to be appointed from the same agency.

As a consequence of poor service provision, lack of responsiveness and understanding of the supports required, Chris requested assistance to source an alternative provider.

The Alliance worked with Chris to locate and fully brief a new support coordinator provider. Five months later and as a result of the Alliance’s continued support, the new support coordinator has a solid understanding of Chris’ needs, is working well with him and is successfully building his capacity.

The failure of such a key transition support role had the capacity to cause the transition to breakdown irretrievably. Without the Alliance and the continuity of input the organisation provided, Chris would have been forced back into hospital and would have had to start the planning and discharge process all over again.

Timeline for NDIS activation Key dates: 07/2015 Chris admitted to hospital. 07/2016 Moves to rehabilitation hospital. 07/2016 Chris approaches Alliance for assistance himself. He is also referred to the Alliance by hospital, family and Office of the Public Advocate. Request to NDIA for ARF requires follow up on 6 occasions. 08/2016 ARF sent to NDIA. 10/2016 DSR completed. 10-‐11/2016 The Alliance reviews a large number of aged care facilities with Chris. 11/2016 Planning meeting held, and plan approved. 12/2016 Chris moves to residential aged care in a region where NDIS has not yet rolled out. 01/2017 The Alliance organises meeting with Chris, RAC and Support Coordinator to discuss transition and behavioural support 01/2017 Chris applies for and is offered Shared Supported Accommodation, but rejects the offer due to location and model of care not suiting his needs. 02/2017 Chris ends service agreement with Support Coordination service as it has failed to engage with him despite having x2 Support Coordinators from the same provider with similar negative experiences of each. The Alliance mentors the hospital’s occupational therapist and physiotherapy provider about their involvement with Chris NDIS plan implementation. Working primarily in a region that has not yet implemented the scheme, they have no information or experience of NDIS. 02/2017 Chris engages new Support Coordination service. The Alliance provides handover and coaching to new provider. 04/2017 Alliance makes referral to psychological/behaviour service after continual failure of referrals to Mental Health services. 04/2017 Alliance completes referral for SDA housing. 11/2017 NDIS routine plan review.

Participant engagement in planning and implementation decisions Chris and his mother were keen to engage in the planning process. Chris took an active interest in reviewing accommodation options and in determining where he would live. Chris’ lack of insight meant, however, that it was important for options to be presented to him listing “pros and cons” and helping him to work through his decision-‐making. He was particularly interested in options that were close to his mum’s home.

With intensive support from the Alliance, Chris actively engaged in the decision to change Support Coordination providers and is now working closely with his Support Coordinator to ensure that his goals are being met.

Ongoing risks and barriers to implementation of required supports Ongoing health risks to the person identified by health professionals

Deterioration in his mental health leading to increased incidents of behaviours of concern for the aged care service. These are being reasonably managed at present but considerable risk of failure of support remains.
Chris risks continuing adverse health events related to his weight. The RAC facility remains concerned about OH&S risks for staff who work with Chris.

Engagement of competent support providers The market for competent and skilled support coordinators is seriously underdeveloped and the Alliance had to intervene to source a suitable replacement support coordinator following the failure of the first agency. Without this intervention, the support coordinator role would have remained ineffective or non-‐existent. Should the need arise, sourcing replacement support coordinators carries a high risk of failure for Chris.

Workforce gaps

NDIS planning and plan implementation processes cannot address dynamic or changing needs. Nor can they deliver the integrated service responses individuals needing multi program input require.
Planners and support coordinators with working knowledge and capacity to work across and within programs do not exist.
Health services are yet to understand the need to remain actively involved with individuals like Chris post discharge, continue health care in community settings or liaise with community health services for their active support.
Health, aged care and other non-‐disability services lack knowledge of the NDIS and its expectations of them.

NDIS planners have poor, if any, expertise with non-‐disability programs like health, mental health, community health and aged care. They also lack the insight and capacity to work collaboratively with non-‐disability programs to deliver the integrated responses people like Chris require.

Outcomes

Areas of success and/or failure of planning and implementation (including goal attainment) Chris’s transition to his new accommodation is now complete and he is reengaging with hydrotherapy and other exercise activities to improve his independence.

Chris’s ultimate goal is to live in affordable and accessible accommodation with some daily support. He wants to live close to his mum, take his belongings out of storage and remove the financial impost he currently bears.

In order to discuss the support required to achieve his accommodation goal, the Support Coordinator requested a review of Chris’ NDIS plan. However, the unscheduled review was completed without any discussion with Chris or engagement with the Alliance. Because other housing options have not been possible, Chris has become demoralised and frustrated with the lack of housing support he has experienced.

Recommendations for resolution of presenting issues and areas requiring specific review Specific recommendations for Chris include:

Support to move to out of RAC to more suitable accommodation
Future NDIS plan should include more mainstream supports and identify how the sectors relate.

SUO}QUIAII}U]

yeeH 4ay

oUT[OWIEL

SUOTJU9AI9}0]

aouely Aay

Chris’ Timeline

47 yearswith Guillain-Barre Syndrome. Not previously known to Disability Services.

Social work intervention Discharge

regarding possible | Complete summaries

housing options. None referral to ACAS provided

available. a | included:

Liaiso a iy se het -PT

partiyant mow application | | | Provide

for DSR information to -OT considered homeless’ as 1 support the hospitalised for 12 preplanning -Psychology

months, Now eligible for | process Quotes provied

priority entry to NDIS L J 1 | -forequipment

Supported Chris with

Completed NDIS preplanning for NDIS Reviewed 11 aged Access Request Form pay, ut received care facilities with Initiated and with participant. Six from Chris, his parents, Chris. Provided facilitated above Chris contacts contacts with NDIA and treating team in transition support meeting to address the Alliance before form received. hospital. and facilitated issues raised by RAC for assistance Liaison with handover from with behaviour and pertictpent, paronte, Sent preplann hospital memento inom

"PD Registrar SW || gocument to NDS cat

and Psychology planner I I I 1 NDIS begins in region

Panel

~ orted Supported Chris i Provided minor support ai in oie ee to Support Coordinator ending engaging a new pats annual review. service Support Coordi “: Pp agreement with experience in Support Coordinator given key mental health. and Chris going well. tasks had not Provided support Chris now cra his been actioned with handover goals.

Case Study 7 – Cath Cath’s case study demonstrates how a lack of clarity of roles and functions at the interface between health and the NDIS adversely impacts patient outcomes. It also highlights the need for role clarification in the workforce, eg. support coordination role and responsibilities.

Baseline Information

Name: Cath

Age: 38 Disability: Spinal cord injury Actors:

Cath
Her family
Health service including − Occupational therapist − Physiotherapist − Social worker − Nursing staff − Medical treating team − Rehabilitation services − Subacute services
NDIS – NEMA
DHHS – Northern region • NDIA planner -‐ NEMA
LAC
Support Coordinator
Post acute care team
Private NDIA funded occupational therapist
YPINH National Alliance

Background information/history Cath is a 38-‐year-‐old woman who sustained incomplete C5 tetraplegia following spinal surgery in April 2016, resulting in a permanent disability.

Health needs and functional impairments Cath has no movement of her legs and trunk and has limited movement in her arms. She requires 2-‐person hoist assistance for all transfers and requires full assistance with positioning. She is at risk of skin breakdown and contractures if this is not managed properly. She mobilises with an electric wheelchair.

Cath requires full personal care support including night-‐time turning, showering and food preparation and bladder and bowel routines.

Cath had tenodesis surgery to facilitate a pincer grip between her thumb and forehand, which enables her to hold cutlery to feed herself and use a joystick to control her electric wheelchair.

Cath has many of the health risks associated with spinal cord injury including risk of skin breakdown, risk of contractures, bladder and bowel dysfunction. She has a supra pubic catheter to manage urinary incontinence.

Summary of presenting situation and involvement of person with health, aged care or other social services Prior to hospitalisation, Cath lived with her parents and sister in the family home. Theirs is a very close family in which Cath played a leading role. She was the primary carer for her adult sister who lives with a brain injury acquired at a young age. Cath’s sister is also an NDIS participant. These roles will continue in a modified form upon her return home.

Cath was in hospital (acute and rehabilitation settings) for 20 months following her injury. She was “medically ready” for discharge after 13 months.

At this point and because her home had not been modified to enable wheelchair access, she was unable her to return home and remained an inpatient for 7 months longer than clinically indicated. Cath was moved to a rehabilitation setting at month 13 primarily for accommodation,

rather than for rehabilitation. This extended hospital stay caused unnecessary additional distress to Cath and her family and additional unnecessary financial costs to the hospital.

Cath’s mother is recovering from a stroke and has a residual disability. Cath’s father has now adopted a key caring role for his wife and 2 daughters. Cath has a large extended family network that is very supportive, but his caring and coordination roles are taking a toll on Cath’s father’s health.

Cath intended to return home if and when the family home could be made accessible. Cath and her family would not consider an ACAS assessment for temporary placement in residential aged care whilst the potential for home modifications were investigated. As a result, remaining in hospital was Cath’s only option and was one the hospital was willing to accommodate.

Cath had her first NDIS plan completed by a Local Area Coordinator. The plan was approved by the NDIS in May 2017. Cath selected the same support coordinator her sister uses to provide her support coordination, as the family already knew this person. Her first plan was inadequate as funds for full home modification assessments had not been included. Without this, returning home was not possible.

Cath and the hospital both thought that a plan review request had been made to rectify this omission, but no progress had been made. Because there was limited communication between the support coordinator and the health service, the hospital had no visibility of the review process and was unaware that the request had stalled. Cath was referred to the Alliance by the hospital in November 2017 to help escalate the NDIS plan review process; and to link Cath with the NDIS and community providers.

The Alliance worked with Cath, the hospital staff, the family, the NDIS planner and the support coordinator to progress the unscheduled plan review and to create workable communication channels with all parties. After 6 months of inertia in resolving the first plan’s remediation, the Alliance managed to get the plan review approved within 5 weeks.

Challenges to planning and service implementation Poor knowledge of the NDIS While the hospital staff working with Cath had a basic working knowledge of the NDIS, they were unclear about how and where to escalate any ‘process delays’ within the agency. They assumed that the support coordinator had the process in hand in relation to the unscheduled review. However, the support coordinator was reluctant to engage with the hospital staff and the latter did not challenge this lack of communication or engagement.

Cath and her family had a basic understanding of the scheme as her sister had phased into the NDIS in 2016. They had a good relationship with Cath’s support coordinator and trusted that the process had been progressed as required. This trust proved to be misplaced and allowed the problems with the support coordinator to run on much longer than may have been the case with a new provider.

Management of health issues Cath’s supra pubic catheter requires changing quarterly by a nurse practitioner. While the NDIS planner took account of this important intervention, the supports to manage it were bundled in Cath’s plan into her core supports.

However, for providers to establish a service agreement to draw down on these funds, they need to be listed in the capacity building section of the plan under Improved Daily living. Until this is resolved via either an administrative or unscheduled review, post acute care have agreed to provide this support on an interim basis to facilitate Cath’s discharge from hospital. At this stage, it is not clear how this support will be managed over the long term.

Inadequate NDIS first plan and NDIS delays Cath had an NDIS plan prepared by a Local Area Coordinator in May 2017. It was approved in the same month.

However, this first plan was inadequate to meet Cath’s needs and support her safe discharge from hospital. The first plan stated that it was an interim plan to investigate home modifications, with a review to be completed quickly once this has been done. The plan included funds for support coordination, transport and therapy assessment for an occupational therapist to assess home modification and equipment needs, it did not include funding for an architect’s structural advice. The support coordinator was not able to use funds in the interim plan flexibly to pay for this architect’s review so a full review was required.

This omission, the time taken to request a review and subsequent administrative delays, were responsible for much of extra 7 months Cath spent in hospital.

At the plan review meeting in November, the NDIA planner indicated that the plan would include provision for rental of a shower/toilet pod as well as the number of carer hours the hospital team had requested in the first plan to enable Cath to go home. The reviewed plan was approved in December 2017. The delay in approval was apparently caused by the plan’s high funding level and subsequent need to escalate sign off to the NDIS regional branch manager.

Lack of experience of support coordinator By his own admission, the support coordinator lacked experience working with the health sector and with people with complex health and physical disability. This adversely impacted the discharge process and Cath’s and her family’s expectations. Much of the input provided by the Alliance was remedial, compensating for an ineffective support coordinator but also to helping the hospital to navigate the NDIS requirements.

Communication between the NDIS, hospital and support coordinator Initially, the hospital assumed Cath’s NDIS plan would meet her needs and discharge would take place in due course. They also trusted the support coordinator to manage the community aspects of Cath’s discharge. While the support coordinator and hospital team had some communication through the occupational therapy team, no formal communication pathway was established.

One example where this lack of communication adversely impacted both the planning and discharge processes was the home modifications assessment. The support coordinator falsely assumed that the “hospital OT was not registered” and not SWEP credentialed and insisted on using a private OT to assess home modifications. Until an agreement to share tasks was negotiated, there was duplication of effort by the hospital OT and NDIS funded private OT.

There was limited communication between the support coordinator and the hospital treating team. The support coordinator did not organise any joint meetings with the health service. The Alliance brought the hospital team and support coordinator together to plan for the review process and to attend the subsequent meeting.

The private OT assessment made a recommendation that temporary shower and toilet facilities be installed in the bedroom (Careport) would be possible and aim was for discharge by Christmas 2017. This was accepted and the Careport unit was installed. Post acute care program paid for the first month rental and the NDIS are now meeting that cost.

Timeline for NDIS activation Key dates: 04/2016 Cath undergoes C5/6 laminectomy surgery. 11/2016 NDIA ARF completed. 11/2016 Cath transfers to a 2nd acute hospital. 05/2017 NDIA planning meeting with LAC held and plan approved. 05/2017 Cath is considered medially stable and ready for discharge. 07/2017 Cath moves to “rehab”. 10/2017 support coordinator requests plan review. 10/2017 NDIA planner did review for Cath’s sister and met Cath at the same time; looked into why – no hospital staff involved. 16/11/2017 Referral to the Alliance by hospital. No plan regarding discharge in place. 24/11/2017 The Alliance discusses case with NEMA assistant director. 30/11/2017 Alliance convenes review meeting with hospital team, NDIA planner, Cath and family members. 18/12/2017 Plan approved. 08/01/2018 Cath is discharged home.

Participant engagement in planning and implementation decisions Cath was actively engaged in the planning, review and implementation processes. She and her family were very clear that the only acceptable outcome was her return home.

Agreed service delivery responsibilities (service/funding split)

Program Responsible Service

Health – Post Acute Care Catheter change; skin checks Catheter changes are an NDIS responsibility. PAC agreed to undertake in short term until Cath’s NDIS funding was amended to include this. PAC were flexible to avoid further delays to Cath’s discharge. Health, hospital Training of support workers by nursing staff regarding hoisting, positioning, skin integrity checking and general health monitoring NDIS Funding and supports as detailed in Cath’s plan

Service coordination methodology There was no agreed service coordination methodology in place for Cath’s NDIS plan or for the delivery of health services. As a result, the Alliance had to undertake significant coordination responsibilities. This also involved support and mentoring with the existing support coordinator to improve their capacity; and improving communication between the NDIS, the hospital and the support coordinator.

Discharge actions outcome and rationale Cath’s discharge was characterised by significant delays, poor handling of NDIS processes and discharge planning, In addition, a lack of understanding of the roles and responsibilities of the various parties; poor communication; and a lack of identified leadership for the main stages of the transition hampered the process.

This resulted in problems with Cath’s equipment in the first two days after discharge. As example, the prescribing hospital occupational therapist ordered a medium size sling, an extra large size was delivered but the therapist failed to confirm correct size on site. In addition, Cath was also prescribed incorrectly with a static shower commode rather than one with a tilt in space option. This meant that Cath was unable to use it safely.

None of Cath’s equipment was trialled in her home. All equipment trials were completed in the hospital environment with hospital equipment. Without the correct equipment, Cath had to be washed and toileted in bed, which caused her great distress. As a result, she lost confidence in her capacity to live safely at home and asked to return to hospital.

The Alliance again intervened, working closely with Cath; supporting and mentoring the social worker and Cath’s service providers to quickly resolve the equipment issues and de-‐escalate Cath’s anxiety.

Ongoing risks and barriers to implementation of required supports Ongoing health risks to the person identified by health professionals Risks include poor skin integrity and limb contractures. Despite these risks being identified by the hospital’s treating team, training for community providers was not available via the NDIS.

Engagement of competent support providers and maintaining trained workforce Cath selected a provider with limited experience with people with spinal cord injury. Because gaps in knowledge and practice existed at every level in the agency, the provider provided supports during the day and early evening only and refused to accommodate the Cath’s need for repositioning through the night. A second provider was engaged to provide overnight support with turning and repositioning. This meant the hospital had to undertake training with two agencies in the specifics of Cath’s care.

This experience reflects the difficulty in locating providers to provide tailored supports outside ‘9 to 5’ working hours. Providers are known to “cherry pick” the service delivery that is the easiest, most convenient or most profitable to provide. The sourcing of competent workers and responsive providers will remain a risk for Cath into the future.

Lack of flexibility in NDIS packages and/or adequacy of funding Cath’s first plan did not contain the required line items to deliver the home modifications Cath needed to live at home. However, obtaining a formal review took significant time and resulted in a longer hospital inpatient stay than was necessary.

The rigidity of the NDIS’ planning and review processes means that even small oversights and mistakes cannot be fixed as easily and quickly as they should be. The NDIA’s processes do not respect the time or service delivery imperatives of other service systems (including those of hospitals and health services). Nor do they respect the imperatives of participants and families. As it will take time for Cath to settle into a support routine at home and gain trust in the NDIS, the difficulty in adapting her supports to changed circumstances may reduce her overall confidence to live well at home.

Need to recognise and support informal care Cath considers her informal supports a valued part of her overall care. Her NDIS plan also assumes continuity of informal supports as central to both the success of her plan and the scheme’s imperatives for Cath’s improved social and economic connection.

Her father’s multiple caring roles, the multiplicity of NDIS plans she has had, the adjustment the entire family has had to make around these plans, the dislocation during the home modification phase and the need for her family to coordinate these disparate elements, has had a profound (negative) impact on them and therefore on Cath’s wellbeing and the sustainability of her plan.

As example, the planner has already indicated that the NDIS will not provide funding to rehouse the family while home modifications are undertaken. This has already created significant uncertainty for the family and intensified the financial and other stresses they are experiencing.

Outcomes

Areas of success and/or failure of planning and implementation including goal attainment Cath’s main goal was to return home. While this has been achieved, it has done so only with significant delays and increased anxiety and stress for Cath and her family.

Cath’s first plan was inadequate to meet her needs and did not have capacity to undertake the home modification assessment functions that were needed. The review process was rigid and ungainly and resulted in Cath spending far longer in hospital than she needed to with associated costs to the health service.

Recommendations for resolution of presenting issues and areas requiring specific review These include

Review requests for home modification and equipment needs must be undertaken in a transparent and timely manner
Training of support staff by nurse providers must be moved from core supports to capacity building to allow nursing providers to claim
Negotiated outcomes involving health services and the NDIS regarding funding and other responsibilities for catheter care, skin monitoring et al, must become established activities in the NDIS planning and plan implementation processes.
Ongoing monitoring is required for skin checks as well as physiotherapy engagement to manage staff training.

SUOTJUIAII UT

yeep Aay

aUIJOUILL,

SuOnUaAIa}U

aouelyy Asy]

Cath’s Timeline

38 years with incomplete C5 tetraplegia following spinal surgery. Former carer for a family member with no history of involvement with disability services.

soem work ee i regarding accommodation an OT reviews equi t , Provides training to

eee cecum | | acer Atendscat’snis | | Provides anne

ome with modifications. communication with Cath’s fo’ on See uipment. Liaises

‘ T a review or aware represents her health ot Cone Liaison with DHHS - DSR fhe sacs of its progress and support needs to wi Lomein! Cod applications process closed. regarding peomons jome the planner lire a Completes NDIA Access Request modifications required ischarge. Form with Cath.

w v w Vv

I *t ft I I ( » A \ { Coordinate Provide input a ane l regarding review Coordinate NDIS : anc ih process and review meeting. Support Cath in RTH I advocate with Support Coordinator recruiting care Heaiti’and I NDIS, Liaise with does not attend duc to agencies, Liaise Ere

Cath, health staff travel required. Work | | with care agencies supports Rd

I and Support with team and and Health who 2p Coord to pport Coordi provide carer 2 ae S I determine current to implement the plan training while hier needs and goals and facilitate Cath is in hospital cia! l for inclusion in discharge Troubleshoot I -ing where , \ * ” © ) _ required)

| NDIS begins in region

“ Young People In Nursing Homes National Alliance

Ma February 2018

alan el oe

‘

Case Study 8 – Mario Mario’s case study demonstrates that health service staff are unfamiliar with the NDIS’ processes and how these might interact at the scheme’s interfaces with health, and aged care services. This study also reveals the need for agreed collaboration between the NDIS and local health services (including post acute care and community health) in relation to the prescription and provision of equipment for younger people moving to aged care form hospital or the community.

Baseline Information

Name: Mario

Age: 58 Disability: Uncontrolled diabetes, peripheral neuropathy, anxiety, Charcot Foot and PTSD Key actors:

Health network x2. Following Mario’s fall and subsequent hospitalisation, Mario received direct care support from the treating health service. He subsequently accessed another health service for management of his Charcot Foot, including Achilles tendon release surgery and orthotics interventions.
Health service including: − Acute care services − Medical treating team − Rehabilitation team − Subacute services

− Occupational Therapist

− Physiotherapist − Orthotist

− Nurse Unit Manager

•   NDIS  -‐ NEMA region

•  DHHS  -‐ North region

NDIS funded support coordinator

RAC selection support agency – pilot via Hospital to assist with residential aged care (RAC) placement
Aged care provider
YPINH National Alliance. Background information/history Mario is a 60-‐year-‐old man with longstanding mental health, diabetes and other health conditions exacerbated over time by homelessness, poor diet and living conditions. Mario has a history of anxiety and post-‐traumatic stress disorder following abuse as a young person. He was admitted to hospital in July 2017 following a fall where he remained on the floor for over 8 hours. He has not recovered his previous level of independence and can no longer walk.

Prior to the escalation of his illness and disability, Mario was actively involved in his local community and had a strong network of local friends. He was a regular volunteer with a soup van in Melbourne’s CBD, a local Men’s Shed and an Over 55’s Men’s Program. He has also had extensive involvement with the Salvation Army. As well as volunteering in these programs, he also received support himself, regularly eating at the soup van and forging supportive relationships.

Mario has a close relationship with his mother who lives interstate. He has limited contact with the rest of his family.

Mario was referred to the Alliance in November 2017 by the hospital social worker as part of the hospital’s discharge planning process. The hospital knew that Mario’s existing NDIS package was inadequate to meet his current needs, but was unsure about the NDIA review process and sought assistance from the Alliance to help with this.

Health needs and functional impairments Mario has peripheral neuropathy, Charcot foot and foot ulcers as secondary complications from uncontrolled Type II diabetes.

Mario uses an electric wheelchair to mobilise and needs support for all transfers. Following extensive inpatient rehabilitation, he has progressed from needing the assistance of 2 carers for standing hoist transfers to undertake a standing pivot transfer with one carer assisting. Mario is awaiting Achilles tendon release surgery and wears a Charcot Restraint Orthotic Walker (CROW) boot on his right foot.

Mario has bladder and bowel incontinence. While his bladder continence is well managed with catheterization, his unpredictable bowel movements require the assistance of 2 support staff to manage personal care.

Despite Mario having capacity to make his own decisions, the hospital’s treating team believes he is vulnerable to outside influence. The hospital reports that Mario displays greater levels of anxiety with change and new concepts.

Summary of presenting situation and involvement of person with health, aged care or other social services Mario has a long-‐standing history of homelessness but secured an Office of Housing tenancy in 2016. When he lived in the community, Mario was able to complete most activities independently, using public transport to access the local area.

He had an NDIA plan approved in May 2017 and was receiving support for house cleaning, some meal delivery and community participation with assistance from a support worker. The engagement of a support worker using his funded NDIA supports had just commenced prior to his hospital admission.

The hospital’s occupational therapist assessed his Office of Housing flat, advising that it was not accessible and was unable to be adapted. More significantly, his unpredictable faecal incontinence led the hospital team to recommend supported accommodation and residential aged care (RAC) as the most appropriate option. Mario was amenable to this as long as the facility was near to an area in which he had lived prior to hospitalisation.

Challenges to planning and service implementation Inflexibility of the NDIS plan review process Mario had an NDIS plan on entering hospital. His support needs had changed significantly as a result of his recent deterioration in function and his plan was no longer appropriate to meet his needs. While a review was needed, the hospital staff’s lack of clarity about the NDIS review process or the role of Mario’s support coordinator, meant that this was not actioned until 67 days after he entered the rehabilitation ward.

Mario’s support coordinator failed to connect with the hospital’s treating team until he was ready for discharge. The hospital social worker initiated the review process himself, but asked the support coordinator to undertake this process following a recommendation from the

Alliance. The Alliance provided significant training and support to the Support Coordinator, the hospital social worker and other staff to enable the NDIS review process to be undertaken successfully. Without the Alliance’s intervention, Mario’s discharge would have been delayed even further, extending his hospital stay and leaving him in limbo.

The NDIS’s review process does not permit supports to be included in a plan for disabilities/impairments that were not previously identified (i.e. a change in primary disability or additional disability). The support coordinator and hospital staff were not aware of this. The Alliance supported them in gathering appropriate evidence and ensured that relevant information was available at review so additional supports would be included in Mario’s NDIS plan.

The plan review was requested in November 2017 and at the time of writing has still not been actioned by the NDIS. Despite numerous requests from the Alliance to NDIS NEMA staff for a progress update, there has been no response.

If Mario had not been agreeable to be discharged to RAC, he would still be in hospital waiting for his review to be completed.

Limited experience and competence of support coordinator By the support coordinator’s own admission, she lacked knowledge and experience of the acute/sub acute health service system and did not know how to engage or interact with the hospital team. The support coordinator failed to work effectively with Mario in a number of ways. She did not contact Mario following his admission to hospital. Nor did she attempt to make contact with the hospital’s treating team when Mario was admitted. Following advice from the Alliance, the hospital social worker initiated her own contact with the support coordinator.

The support coordinator did not see the need for an integrated plan review with Mario’s treating team as she failed to understand that Mario’s plan might not be appropriate for him after the significant change in circumstance relating to his health and functional capacity.

The support coordinator’s poor working knowledge of the NDIS review process prevented the successful completion of the review. As the support coordinator had been appointed to support Mario primarily for psychosocial issues prior to his hospitalisation, it may have been prudent for her to admit she was out of her depth and therefore advise Mario to engage a new support coordinator skilled in health, housing and aged care issues.

The Alliance’s involvement not only compensated for the lack of initiative and knowledge of the support coordinator; it also supported the hospital’s active engagement with the NDIS. The Alliance managed all aspects of Mario’s transition, including the administrative elements and ensured that Mario was fully involved. The Alliance also provided significant mentoring support to the hospital social worker.

Because he did not relinquish his Office of Housing flat on admission to RAC, Mario is still paying rent on it. While Mario was willing to give up the flat to move into RAC, he needed support to complete the paperwork and organise to move out. This support was not forthcoming from either the hospital social worker or the Support Coordinator.

The cost of rent on this property on top of his equipment hire costs is placing a significant financial burden on Mario and as far as the Alliance is aware, there are no plans to resolve this. Now that he is out of hospital, supporting Mario to finalise arrangements with the Office of Housing is clearly the Support Coordinator’s responsibility, but this has not happened.

Lack of working knowledge of the NDIS While Mario already had an NDIS plan, both he and the hospital’s staff had limited knowledge about his plan or how the supports that were funded could be used flexibly to assist with community access and looking at housing options while he was in hospital. Following intervention and advice from the Alliance, the support coordinator accessed the funding for these purposes.

Equipment provision The hospital staff were unclear about the liability of the NDIS to fund Mario’s current and future equipment needs.

While Mario required an electric wheelchair and a walking frame at discharge, the hospital’s allied health team failed to prescribe these items. Instead, the hospital’s post acute care program funded the hire of Mario’s equipment for the first month post discharge, leaving Mario to self-‐ fund these expenses himself after that time. As a result, Mario is still paying these hire costs two months post discharge. This is not financially sustainable for him, but Mario will be required to self-‐fund his equipment hire until the NDIS review takes place.

Mario also needed an orthotics assessment and prescription prior to discharge for his Charcot Restraint Orthotic Walker (CROW) boot. However, the Hospital Prosthetics department was unsure if the NDIA would fund the CROW boot that Mario requires. While the hospital

continued to progress assessment and prescription of his CROW boot, the funding responsibility remains unclear until his plan review is completed.

The Alliance is seeking more guidance concerning how to arrange equipment such as this in the future. The Alliance has been advised that, because the scheme is likely to see this as a medical need with the CROW boot required to prevent injury, the NDIS is unlikely to fund this equipment for Mario.

Unknown Discharge destination

Because Mario’s Office of Housing flat was unable to be adapted to his needs, the option of discharge to RAC was raised with him. Mario was amenable to moving into a nursing home and relinquishing his flat. Because of Mario’s age and the need for a residential service with capacity to manage his health and other support needs, the hospital did not canvass possibilities other than RAC for Mario.

The hospital had been approached by an aged care placement agency to undertake a trial of their services whereby inpatients would be assisted to choose and move to a nursing home free of charge. The hospital proposed Mario take part in the pilot program and he agreed to participate.

Mario was shown only one of the five aged care facilities he had previously shortlisted with the assistance of the hospital social worker. Despite the RAC facility being a long distance from his local networks, he decided to accept this option without visiting any other because he identified with the other residents, many of whom had also experienced homelessness. With the guidance of the placement agency, Mario was discharged to a respite bed in the nursing home until a permanent bed became available.

Because he was being discharged to RAC, the Alliance asked that the NDIS review be postponed to enable the Aged Care Funding Instrument (ACFI) to be included in his new plan. Unless this was done, another subsequent review would be required after his move to aged care. This timing dilemma further confounded the plan review process for Mario.

Timeline for NDIS activation Key dates: 05/2017 Mario’s first NDIS plan is approved (preceding hospitalisation). 13/07/2017 Admitted to hospital following fall. 24/08/2017 Transfers to rehabilitation ward. 26/10/2107 Medically ready for discharge. 02/11/2017 Change of circumstances and request for review completed by Support Coordinator. 12/11/2017 ACAS approved. 13/11/2017 Referral to the Alliance to help facilitate discharge process. 20/11/2017 Alliance convenes meeting of all actors including Mario, support coordinator, relevant hospital acute and subacute staff, hospital social worker, rehabilitation and allied health staff. 24/11/2017 The Alliance consults with NDIS regarding a change in Mario’s primary disability. 05/12/2007 RAC placement agency meets with hospital Social Worker regarding placement agency trial. Mario agrees to participate in trial. Social worker helps Mario to select 5 RAC options for consideration. Support worker takes Mario to visit first RAC on list. Mario decides to move to visited RAC and not visit the 4 remaining RAC services he had initially selected. 21/12/2017 Mario is discharged to respite bed in the RAC, pending permanent bed availability. 10/01/2018 Mario moves to permanent bed in RAC service.

Participant engagement in planning and implementation decisions Despite Mario’s active engagement in meetings and decision-‐making throughout the planning and plan review processes, he had limited insight into his circumstances. He also had unrealistic views about the functional gains he might make with rehabilitation. He did, however, fully understand the implications of moving into RAC.

Service coordination methodology There was no articulated service coordination or communication methodology involved in the discharge planning and NDIS plan review processes. Until contacted by the hospital’s Social Work team, Mario’s Support Coordinator did not engage with the hospital’s treating team or with Mario himself as an inpatient. The Alliance provided the leadership and coordination framework to bring the parties together around Mario’s transition. The delays and gaps in the NDIS administrative process created significant uncertainty and challenges to this intervention.

The Alliance continues to

Mentor and coach the support coordinator to activate the supports available in Mario’s first NDIS plan;
Prepare Mario, the support coordinator, the aged care and health services for an NDIS plan review meeting once arranged;
Engage with the RAC provider to improve their understanding of the NDIS and manage Mario’s ongoing care. The Alliance has not been able to identify a suitably skilled support coordinator with capacity to successfully engage with and coordinate health and aged care services for Mario. As a consequence, the possibility of engaging a different support coordinator has not been raised with Mario.

The enduring lack of appropriately skilled support coordinators with capacity to work within and across multiple service systems remains a significant risk for Mario with regard to his current and future NDIS funding; and the activation of the integrated service responses on which he depends.

Discharge actions outcome and rationale Primarily because of his mobility issues and care requirements, RAC was identified as Mario’s best option early in his hospital stay. The hospital’s low expectation of what the NDIS can offer in relation to managing continence issues, contributed to this course of action.

Mario was considered medically stable for discharge on October 26, 2017. However the need to undertake an NDIS plan review, wait for the placement agency to complete its work regarding Mario’s choice of RAC, meant that discharge was delayed for a further 2 months.

Discharge timing was further complicated by Mario’s participation in the placement agency’s pilot and the decision that he would be discharged to a RAC respite bed prior to permanent placement being available. The placement agency did not consider the financial implications of Mario’s move to RAC when he was still paying rent to the Office of Housing.

Ongoing risks and barriers to implementation of required supports Ongoing health risks to the person identified by health professionals The hospital team remains concerned that Mario’s chronic health conditions may not be well managed and that unless he undergoes regular monitoring, this will further compromise his health. Ideally, a skilled Coordinator of Supports with capacity to work collaboratively with the nursing home should be tasked with this role and ensure Mario remains connected with the health services he requires. But unless this is included in his NDIS plan review and a competent support coordinator found, this is unlikely to happen.

Because he is now a permanent resident of RAC, Mario is subject to the funding limitations for direct care that the NDIS has applied to scheme participants living in RAC. Under these funding restrictions, the NDIS will not fund direct care beyond that which can be sourced through the Aged Care Funding Instrument (ACFI).

The ACFI is unlikely to be able to provide the intensity of support Mario requires to maintain his current level of independence, manage his faecal incontinence and maintain his health and wellbeing.

There is a further risk that Mario will not be adequately supported to maintain his current level of independence in the RAC. When he entered the nursing home, Mario was able to complete pivot, step transfers with supervision. However, if the nursing home is not able to respond to Mario’s requests for assistance, there is a very real risk that his incontinence will adversely impact his dignity and his confidence and increase

his frustration. A very polite and cooperative man, Mario is unlikely to be able to advocate for himself in these matters. He is particularly vulnerable to being underserviced and experiencing loss of independence and poorer quality of life as a consequence.

Engagement of competent support providers Without a collaborative approach to Mario’s support by the RAC, health providers, the NDIS, the coordinator of supports and disability and aged care workers, Mario will not be supported appropriately.

The RAC also requires significant capacity building and support if they are to maintain Mario’s independence and dignity. The individualised approach to transfers, communication, prompting and latent supervision that Mario requires are not part of the service model used by RACs.

Disability workers engaged to support Mario to access the community also require these skills, and it will be a challenge to secure the right workers. The selection of a support agency and support workers will need careful diligence and Mario will need significant support to select and monitor provider performance.

Lack of flexibility in NDIS packages and/or adequacy of funding Trying to get the nursing home to deliver his support in ways that maintain his skills and independence, as well as manage his multiple health conditions will need constant monitoring and additional resourcing if the RAC is to undertake this successfully. Yet resourcing for additional training for RAC staff is not included in Mario’s plan.

The NDIS’ refusal to fund direct support for scheme participants living in nursing homes above the level the ACFI provides, actively compromises the RAC’s capacity to deliver the individualised approach, Mario needs. The scheme’s refusal to acknowledge the limitations of the RAC service delivery model for NDIS participants is discriminatory. Nowhere else are scheme participants denied the reasonable and necessary provisions of the NDIS Act because of their place of residence.

Outcomes

Areas of success and/or failure of planning and implementation including goal attainment Because of the Alliance’s proactive engagement with Mario and other actors before and after his discharge to RAC, Mario has made the move to nursing home accommodation reasonably well. While RAC remains an inappropriate long term option, Mario hopes to establish informal supports similar to those that he had developed when living closer to the CBD.

Recommendations for resolution of presenting issues and areas requiring specific review Specific recommendations related to Mario are:

Change of support coordinator. Mario needs to engage a support coordinator with capacity to work collaboratively with and across health, aged care and disability services and the NDIS; and work prospectively with Mario to address issues about which he does not have immediate insight.
Resources for RAC provider. Particular focus is needed to ensure the RAC provider can deliver services to Mario that are targeted and appropriate. This will need ongoing action by the support coordinator, the continued involvement of the Alliance, as well as additional funding for the RAC to deliver the staff training and individualised support Mario requires.
Orthotics. Clarification concerning funding and review responsibilities for provision of the CROW boot.
Since Mario’s move to RAC, an NDIS plan review is extremely urgent and needs to be escalated.
Support to help Mario relinquish his OOH tenancy to avoid further financial disadvantage.

Mario’s Timeline

58 year old man with longstanding mental and physical health conditions resulting in permanent disability. History of peripheral neuropathy, Charcot foot and foot ulcers secondary to diabetes, post traumatic stress and anxiety. Uses an electric wheelchair for mobility. Requires accessible supported accommodation due to high support needs.

ee ce a—— > A 1 sis Hospital social worker Discussions in team supports Mario in meetings indicated that . Mario will be unable to Referred to Eee) Chet Te return to his Office of Deemed ACAS. Hospital engages Aged Care . n Housing (OOH) home. ‘medically Approved for Placement organisation to Provides discharge Requires supported ready for, permanent assist with securing handover to RAC. accessible accommodation. discharge residential Residential Aged Care No engagement with care a oe

tee Avy

Initial NDIS plan

approved two

suTpPUlE suonuassezuy

» & Liaise with NDIA regarding

Raise need for review Mentor Support delaying review meeting with NDIA in relation to Coordinator with until Mario is in of primary establishing supports for permanent RAC to enable disability from Mario and engaging with ACFI to be incorporated psychosocial to physical RAC. into his plan

suonuaAsazU] aouetyly AoW

Actively engaged with NDIS prior to admission

“ Young People In Nursing Homes National Alliance

i February 2018

Wp nn

Systemic issues

“ Young People In Nursing Homes National Alliance

101

Analysis of systemic issues a) Workforce issues An endemic shortage of appropriately trained workers has major implications for people with complex needs living in their own homes or in residential service settings.

The lack of a skilled workforce was pervasive in every case study and interaction with service providers. Significant time was spent by the Alliance working with participants and families to select providers willing to support people with complex needs and negotiating appropriate service agreements. As well as a shortage of capable support workers, attendant care agency staff lacked a detailed understanding of the situations faced by participants and their families. In one case, support workers were calling the calling Alliance staff for guidance in dealing with situations such as family illness, extending shifts or training when they should have been liaising directly with their supervisors. In several instances, agencies have been unable to find staff to cover shifts to deliver essential personal care routines, leaving participants without key supports.

In a number of the case studies, finding workers who understood that their role was to prompt and support the participant to undertake tasks such as independent transfers, choice making etc., has been extremely difficult. In each of these case studies, this constitutes an identified risk to the success of their support programs. As well as for participants living at home, this risk exists for those participants in residential aged care facilities where the service delivery model and staff training regimes are not aligned to the needs of younger residents, and embedding individual goals into the service delivery routine is extremely difficult.

b) Clarification of funding responsibilities between health and NDIS While the split of responsibilities between the NDIS and the health system has been raised in a range of policy forums, there is still no operationally consistent position. The lack of clarity about the split of funding and other responsibilities between the NDIS and other service systems was highlighted in the Productivity Commission Review of NDIS Costs. The case studies have again highlighted lack of clarity around several core service areas. These include wound management, PEG care and catheter management, as well as the cost of consumables for people being discharged from hospitals to the community. There is significant confusion around who takes responsibility for these core services.

102

While the COAG Principles include scope for joint work, there has been no evidence that this is occurring. Instead, the NDIS has been left to apply the COAG Principles from an isolated and defensive position when planning with participants with complex needs. In a 2016 Senate Estimates hearing, an NDIS trial site manager spoke of the challenges in using the COAG applied principles:

The interface between the NDIS and other mainstream agencies has always been a grey area. We have the applied Principles that were published when the scheme came into being, and they have just been revised and republished. Those are the Principles that inform the interface between us and other jurisdictions, but they are not specific enough for us to make a clear decision in every case.

There are still some gaps that continue to emerge – things that we have not had to deal with before…. Hopefully in all cases the conclusion is the correct one and then is applied consistently. One of our biggest challenges is to apply it consistently.1

The admission that service gaps and new dilemmas continue to arise during the implementation of the NDIS is just as relevant in

The Project saw numerous instances where decisions about the location of funding responsibility were contested with no clear outcome. The most telling of these was the decision of the NDIS not to fund the consumables and the suction machine for Gianes that resulted in a $1,000 per month cost shift to his wife. We have also seen other examples where the NDIS has made unilateral decisions that have had far reaching consequences for health services and participants.

Notable amongst these is an NDIS refusal to fund interim accommodation for a participant leaving hospital who needed somewhere to live while her 6-‐8 month home modifications were completed. The NDIS’ refusal to fund this participant’s interim accommodation – something other personal injury schemes routinely fund in the same circumstances – has pushed this responsibility back to the hospital. The health service is now paying $1,000 per week in SRS fees for this patient in lieu of keeping her as an inpatient in acute care.

1 Lee Duncombe, Hunter Trial Manager in Hansard, Joint Standing Committee on the NDIS, 7 March 2016. See http://parlinfo.aph.gov.au/parlInfo/search/display/display.w3p;query=Id%3A%22committees%2Fcommjnt%2Fb02490da-‐1f4b-‐458b-‐a978-‐57e36ade0fa5%2F0006%22

103

As much as the NDIS and government agencies want universal certainty, the business of a social insurance scheme that relies on ‘reasonable and necessary’ judgements will, by its very nature, be fluid and variable across different regions and demographic groups. Reducing this complexity to a yes or no response to requests in individual plans based on the abstract COAG Principles is not sufficient. A protocol is needed between the NDIS and jurisdictional health systems that enable negotiations with local health networks around funding splits and sharing of responsibilities for people with complex needs.

While clarity of responsibility and funding is an unresolved issue, the project is aware that many of the grey areas confounding the NDIS transition have remained unresolved for many years, but been masked by flexible use of ISPs, cross subsidisation from block funding from providers and application of undogmatic carer support funding programs. The funding of community based allied health, flexible respite, equipment, disability related utility costs and other practical supports via these means, delivered practical and individualised solutions that were valued by many people. They also provided short circuits that meant that service systems could avoid difficult policy dilemmas about how to otherwise fund these supports through transparent programs.

Over time, disability services in Victoria took on funding responsibility for these supports and services that should have been funded by other portfolios (the Slow to Recover Program is a notable example). These supports have not translated to the NDIS, a situation that has been exacerbated by changes to HACC and community health programs.

While the NDIS is a locus for frustration that certain supports will not be funded as disability supports, the scheme is only part of the problem and can only be a part of the solution. Policy work by DHHS to examine these gaps is unavoidable and may uncover the need to establish targeted programs in the health system for community based rehabilitation, utilities, equipment and consumables and service coordination.

c) Lack of knowledge about the NDIS Knowledge gaps about the NDIS were evident in the teams in hospitals, in families and participants and tellingly in the support coordination workforce. This lack of knowledge influenced the course of each of the eight cases studies in this project.

While this is clearly a transitional issue, knowledge gaps about the NDIS have enduring relevance for health services both inside and outside NDIS rollout areas. The project had expected to find a lack of knowledge and familiarity with the NDIS in health services operating in areas

104

outside the NDIS rollout areas. Surprisingly the project encountered a persistent lack of working knowledge of the NDIS in health services operating within NDIS areas, particularly with front line staff.

Health service personnel The project is aware that the Victorian Healthcare Association (VHA) has been delivering NDIS information sessions to hospital services and the Alliance has liaised with VHA previously about their TSP project. At that time, it appeared that their sessions were aimed at management. Our experience has been that this information, as well as the information contained in information packs and fact sheets distributed by DHHS, is not filtering down to operational staff.

This static information strategy is not hitting the mark. Front line staff and team leaders told the Alliance that the information they had received from these sources was scant and insufficient. In contrast, the secondary consultancy and expert mentoring of the project has been helpful in up skilling operational staff and led to a more sustained embedding of knowledge and practice in their teams.

Participants and families All the people with disability and their families in in the case studies had extremely limited knowledge of the NDIS. This negatively impacted their adjustment to change and their discharges from hospital. A significant amount of time was invested by the project in explaining the scheme and guiding people through the NDIS processes. When these NDIS processes broke down or were delayed, individuals lost faith in the system and found it difficult to find accurate and reliable advice. None of these people had attended any NDIS community information sessions and were not aware they had been organised.

In five hospital settings the project worked in, there was no evidence of information material about the NDIS being displayed.

This real time information provision was critical to moving processes forward for individuals and health services. But because of the low impact of the DHHS and NDIS information campaigns, it has been a remedial activity for the project. The capacity to continue this context driven information about the NDIS must be increased for the remaining rollout areas, as the ‘set and forget’ pamphlet and workshop approach is not effective on its own.

105

d) Lack of engagement between the NDIS and health services Health services consistently told the project that they wanted to have a dedicated contact within the NDIS for liaison around patient needs and to assist with NDIS administrative processes. The loss of the DHHS Disability Services Hospital Liaison Officers has been felt deeply in health services. Although funding was tight in the old system, there was certainly the ability to escalate crisis situations where disability services were needed. Without these liaison officers, a vacuum exists that must be addressed. Time poor health service staff continue to find it inefficient and extremely frustrating to have to call a national 1800 number to get answers to even simple process questions.

NDIS planners engaged with people in these case studies have also been poorly skilled and not conversant with hospital imperatives or with the health conditions of the participants. The project saw multiple instances where extensive rework was required by health staff because of poor communication with the NDIS or NDIS process breakdown,. There has also been duplication of effort by hospital staff and private therapists funded by the NDIS that has arisen because of poor communication. Some hospital teams have told the project that their workload and costs have increased since the NDIS has rolled out. They have been asked to provide reports for planning at short notice; and then been asked by planners to re-‐write them in ‘NDIS language’. In some cases, the NDIS has funded private therapists to provide assessments for plans, particularly for equipment. The private therapists then seek additional information from the health service to deliver a duplicate of the original assessment. The time and resources this takes has to be drawn from already constrained program budgets and is costing the health system considerable additional money.

The project spent significant time bringing the various parties together, mediating misunderstandings and resolving barriers arising from engagement with the NDIS administrative processes. While there is currently no protocol for communication or collaboration between the NDIS and health services in planning or plan implementation, there is a pressing need for collaboration where participants need combined health and disability support services to return to the community.

The absence of a communication protocol or a framework for collaboration between the NDIS and health services is a major gap in the implementation of the NDIS. The project has filled this gap and has worked hard to ensure that flaws in discharge NDIS processes have not impacted negatively on individuals and families.

The case studies highlight the circumstances that worked against the achievement of positive outcomes for hospitals and participants. A central feature of negotiating outcomes and overcoming systemic and practice barriers has been the intermediary or systems wrangler role

106

performed by the Alliance. Facilitating contact and collaboration between key parties, will remain a critical need until such time as there is a structured joint planning arrangement in place.

The project has also seen instances where participants who were transferred between programs or campuses in a health network, were disadvantaged by poor internal communication. This was evident in Cath’s case study where there was virtually no handover from the social worker in the acute hospital to their counterpart at the rehabilitation setting. The need for improved systems of collaboration extends to internal operations of health networks themselves, as well as across sectors and to the NDIS.

e) NDIS planning, implementation and review processes The NDIS planning process is not fit for purpose for people with disabilities with complex health and disability needs. To date, the NDIS has led the planning process and has commonly made decisions about disability supports without reference to health services or the needs and preferences of participants with complex needs.

In the context of health and discharge planning for individuals with complex needs, health service teams have a lot to offer the planning process. However, their only role at present is the provision of static information to planners. Health service teams have expressed concern to the project that their clinical information is given to inexperienced planners who, while conversant with NDIS processes, are naïve about the interaction of the individual’s health condition with their disability; and are unable to reflect key health management imperatives in the NDIS plan despite their significance to the person’s life.

As a result, a number of gaps have been observed in NDIS planning for this group, including vital core supports being left out of plans. These have included provision for essential home modifications, equipment and consumables and training for support workers around critical processes specific to an individual, such as PEG care, transfers and tracheostomy management. Immediate review has been required in these instances.

The planning process from point of access being granted to plan approval has, in some cases, taken up to 57 weeks. Processing delays for planning, acknowledgement and conduct of reviews are also causing significant financial impost on health services and increased stress for individuals and families.

107

Requests for unscheduled reviews have not been responded to by the NDIA in the timeframes indicated in the Act. As a result, the review process has hindered timely discharge from hospital. The Alliance’s experience is that these reviews are taking a minimum of 12 weeks, with some taking upwards of 30 weeks to action.

Health services are not familiar with the review process, but particularly how to escalate a request if no action has occurred after the first 14 days, the time by which the legislation stipulates a decision regarding the review request should have been made. Some families have expressed a desire to have their multidisciplinary team in their health service undertake or lead their NDIS planning. For them, the management of the multiple and sometimes fragile health conditions of their family member is the predominant concern. These families have told the Alliance that for them, disability supports need to be subordinate to the health services they receive from these multidisciplinary teams. They expect the health team to be organising and governing the disability service design and delivery and have been nonplussed by the disruption that the reversal of these priorities in the NDIS planning process has created.

While joint planning and implementation processes are essential for participants with complex needs, the NDIS planning process does not yet encourage collaboration to deliver these integrated plans. Formal protocols for communication and service responsibilities between the hospital and the NDIS (and its key partners and contracted providers) would greatly assist in governing administrative process, decision making and service delivery in areas of potential joint responsibility.

The project sees value in the development of a dedicated NDIS pathway designed specifically for joint planning, service delivery and review for people with complex needs. This pathway would be a partnership between health services and the NDIS and reflect the reality that both need to take a joint lifetime support approach.

We note that the new NDIS pathway pilot announced with great fanfare in 2017, does not include people with complex needs in the NDIS ‘super intensive’ category. This means that, despite recognition that the NDIS processes are deficient, no provision has been made for the one group that does need a revised planning methodology.

One change the NDIS could make that would have significant value in this area is to implement the recommendation from the Productivity Commission’s 2017 review that recommended that minor plan amendments be made without a full plan review.

108

f) Essential equipment provision Lack of timely provision of critical pieces of equipment on discharge from hospital (e.g. hoists, tilt in space commodes and wheelchairs) is adversely impacting health services and people with disability. Where appropriate equipment is not arranged on discharge, scheme participants are financially disadvantaged when they are forced to self-‐fund rental items for extended periods of time. Two instances of this are detailed in the case studies.

Equipment prescription processes for people in hospital have historically been that OT’s have only assessed for and prescribed interim rental equipment as part of post acute care resourcing. After the initial post acute care 30 day funding provision ceases, the patient is required to self-‐fund equipment hire. The reasoning for this is

The person’s functional abilities may change with ongoing rehabilitation and equipment needs may change as a result. While this is a genuine concern, all of the case study participants had reached a ‘plateau’ in their rehabilitation. Indeed, some had been in hospital for 5 to 7 months after they were deemed “stable” and ready for discharge. In these cases, equipment could easily be prescribed, especially if the discharge destination was known.
The prescribing process requires equipment follow up after delivery and if the person has left hospital, the prescriber (hospital allied health staff) would not have the remit to follow up in the community. SWEP process requires the prescriber to follow the entire equipment process from assessment and recommendation, to set up and training. Community allied health staff are also reluctant to accept responsibility for equipment items that they have not personally prescribed.

The combination of these factors means that there is a static approach to equipment provision. For people with complex needs, the allied health staff in hospital settings may know the person well and be best placed to carry out the assessment.

Consideration must be given to either increasing the flexibility of DHHS funding for people transitioning to the NDIS, or extending the capacity of Post Acute Care funding where there is a gap between Post Acute Care withdrawing and NDIS supports commencing. Individuals residing in aged care facilities cannot fund large accommodation fees and the cost of hiring key pieces of equipment.

109

g) Support coordination The role of support coordination is ill defined The Alliance has found consistently that support coordination as it is defined by the NDIS, is completely inadequate for people with complex needs. Across the eight cases detailed in this report, as well as many others in the Alliance’s TSP project, the Alliance has had to undertake extensive remedial work coordinating services and commonly spends significant time educating and mentoring Support Coordinators in their efforts to implement NDIS plans.

Workforce capacity The support coordination workforce is made up largely of people with experience as disability case managers or as care workers. The critical skill set comprising the ability to work with and across multiple programs; a working knowledge of the health and aged care sectors and the NDIS; and negotiating skills to successfully deliver a properly integrated service response, is largely absent. The NDIS is relying on natural market development to deliver a competent workforce of support coordinators. The fact that the sector remains seriously underdeveloped 4 years after the scheme began operating reveals this to be a completely unrealistic expectation.

The siloed nature of the existing human services system has not encouraged development of coordinated approaches to service delivery for people needing multi program responses. As a result, a workforce with the skills and expertise to work with and across multiple programs such as health, aged care, employment, education and the NDIS, has never developed.

The NDIS offers a substantial opportunity to develop a skilled workforce in this area with capacity to not only deliver benefit to NDIS participants, but also improve collaboration and cooperation by human services programs to their mutual benefit.

A policy intervention from both the NDIS and DHHS is needed to address this gap that could include strategies such as block funding specialist agencies to provide expert cross sector service coordination for people with complex needs.

A redefinition of the role is also needed that brings the role expectation into line with the Alliance’s ‘systems wrangling’ function to work across service programs

110

h) Uncertain discharge destination – lack of appropriate housing and support options Four of the people in the case studies had problematic discharges from hospital because there was no clear discharge destination. In all these cases, the discharge destination ended up being residential aged care. In one case, this was an acceptable alternative for the individual concerned. But placement in residential aged care was driven by expedience for the remaining three.

As an issue being examined at ministerial level as well as within the NDIS and the broader community, the enduring lack of accessible housing is well documented. There are no easy solutions and increasing supply will take time. However, while new stock is delivered, there are a number of process improvements that can be implemented to improve the choices for people with complex needs.

There is an urgent need to have a transition pathway to provide alternatives to becoming long stay patients in hospital for people who cannot return to their previous accommodation. In a number of the case studies, planning for a post hospital accommodation option did not start until relatively late in the hospital stay.

The timing of NDIS planning and other administrative processes is also out of step with the broader planning process that needs to be ongoing to investigate accommodation options. Because the NDIS will not begin planning until the last stages of a hospital stay and plan approval will not take place until the very end of the stay, there is no opportunity to get resources deployed to start the process of locating potential accommodation. This is a role that could be similar to the ‘systems wrangling’ function performed by the Alliance.

The Alliance has previously recommended that, for people with complex needs and particularly those in hospital, a support coordination or similar role be made available to people upon having their access to the NDIS approved. This service can then work with hospital staff to marshal clinical and community resources around a well-‐planned return to the community for the individual.

This would require the NDIS to introduce an episodic funding item in its price guide to services where a coordination function can be pre approved. It has been suggested that this role can be performed by a LAC, although the Alliance has seen no evidence of this being feasible given the current planning focus of LACs and the specialist nature of the coordination role that would cover pre-‐planning, integrated planning, locating accommodation options. In the project’s view, the NDIS should place an embargo on LACs undertaking planning for people in hospital. The first plan for people with complex needs is such an important step in the NDIS relationship that it needs to be delivered by highly competent personnel.

111

It has also been suggested by the NDIS that anything to do with any aspect of discharge planning is the responsibility of health services. For people with complex needs with uncertain discharge destination and the need for significant supports in the community, this is an unrealistic and narrow view. The location of discharge outcomes and the success of NDIS support plans depend on collaborative planning. The timing and pace of planning needs to be driven by the needs of the individual and the imperative of the health service to discharge people when clinically appropriate.

i) Management of health issues For a number of the case study participants, the issue of how their ongoing health needs are going to be managed remains unresolved.

The NDIS has approved support coordinators as a facility for service coordination of funded disability services. But this role has no mandate to coordinate and integrate health services with NDIS services. Nor would the participants described in these case studies want their current support coordinators moving into this area because of their skill deficits.

The treating teams in hospitals do not follow patients beyond the hospital door, instead referring them to community health or primary health services. The experience of the project is that there is little routine follow up by hospital staff to ensure that these referrals have been taken up and the individual is being serviced appropriately.

In the absence of any other competent option, the project undertook this follow up and negotiation with community health centres regarding their provision of services to participants. In some cases, community health centres had a blanket policy to refuse funded services to NDIS participants, treating them as compensable or private clients. Where participants had therapy in their NDIS plan, community health services assumed that this was intended to fund their services, even where the NDIS therapy approval was for a specific purpose such as equipment assessment.

This issue featured in Gianes’ case study. In that instance, the NDIS had approved therapy services to assess for home modifications and Gianes had been referred to the community health service by the hospital for tracheostomy related speech therapy. The community health service decided that the NDIS funding was there for the speech therapy and refused to provide this therapy from its own budget despite, it being a health related service.

112

While this is an issue related to the question of funding and service responsibilities, the work required to resolve this ‘on the ground’ was nobody’s job, despite it being a health management issue. While the hospital should ideally have made the link with the community health service, the Alliance was required to intervene to ensure Gianes’ discharge and transition home could succeed.

Equally, the difficulties faced in sourcing wound management for Benita were resolved by the project because it was not followed up by the hospital. Should Benita experience subsequent pressure or catheter issues, it is unclear how these will be managed in the absence of any overall health management.

While most of the case study participants have GPs in place, the specialisation of the health oversight and the visibility of day-‐to-‐day issues are things that are beyond the scope of a GP. As a result, their effectiveness varies from case to case for these individuals and their families.

The ongoing management of health issues alongside disability supports continues to be a vexed and unresolved methodology in the lifetime support of people with complex needs accessing the NDIS. This will be a key area of investigation and testing as the Alliance continues to work with health services in the second part of the project and will need to include clinical oversight, ongoing training of support workers, delegated care arrangements and access to specialist clinics.

The approach used by the Transport Accident Commission (TAC) in its management of clients with complex needs is instructive for DHHS and the NDIS. The TAC routinely funds allied health oversight of programs where clinical and disability support issues intersect and/or clear risks of program failure exist. Each of these clinicians works to a unique brief depending on the nature of the outcomes required; and reports regularly to claims managers to enable service plans to be adjusted in real time to respond to circumstances and present risks.

While the imperative for the NDIS to work to nationally consistent rules for a service market is a stated implementation goal, it will not deliver the sophisticated collaborative responses that are needed for the cohort of people with disability and complex health needs. The importance of building a cross sector collaborative framework with capacity for local negotiation and expert service coordination must be an agreed implementation goal. This may, however, be a policy reform project led by DHHS rather than left to the NDIS alone.

Draft Principles

“ Young People In Nursing Homes National Alliance

114

Draft principles for collaboration These principles have been developed from the experience of the project in linking health services with the NDIS around supporting people with complex needs and their families.

The principles articulate the underpinnings of collaborative engagement by the NDIS and health services to organise and fund the integrated services people with complex needs require. In doing so, they offer an opportunity to contextualise the COAG NDIS Principles to determine the responsibility of the NDIS and other service systems2 to the Victorian health system.

The project will test these with hospitals and health services to define the practical actions and location of responsibility in delivering collaborative planning and service delivery to people with complex needs.

Principle 1: Partnership of 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 the NDIS and the health system to “work together at a local level to plan and coordinate streamlined care”. This is not possible without the development of detailed collaboration protocols, governance arrangements and cross sector relationships between the NDIS and local health networks.

As defined above, people with complex needs require integrated and coordinated services from the health system, the NDIS and other service systems by necessity. Therefore the planning and service delivery methods used in the collaborative system, must incorporate the service contributions of specific health and other community programs; and have well defined processes to enable joint planning, consumer participation, service delivery, coordination and review and calculation of shared funding.

2 See: https://www.coag.gov.au/sites/default/files/communique/NDIS-‐Principles-‐to-‐Determine-‐Responsibilities-‐NDIS-‐and-‐Other-‐Service.pdf, specifically: The NDIS and the health system will work together at the local level to plan and coordinate streamlines care for individuals requiring both health and disability services recognizing that both inputs may be required at the same time or that there is a need to ensure a smooth transition from one to the other: 3.

115

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

To ensure a seamless discharge process, all actors must be involved from the outset to ensure that an individual’s needs are understood; respective responsibilities for responding to these needs are agreed; and actions undertaken to ensure supports are agreed and resourced at the time of discharge.

The NDIS and local health networks will have agreed early intervention and planning processes and time guarantees for funding decisions and access to supports. This will prevent people remaining in hospital unnecessarily.

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

The collaboration of local health services and the NDIS to deliver integrated services to people with complex needs will be specific to this group. A dedicated administrative pathway will be agreed and implemented that enables timely access to the NDIS, joint planning, service delivery and review pathways that action protocols agreed by involved actors. The pathway will define roles and responsibilities of key staff and shared governance arrangements for funding and decision making, including how individuals and families will participate in decisions.

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

A detailed joint planning and review process is a precondition to the delivery of integrated health services and disability supports to people with complex needs.

The process will cover information provision and pre-‐planning; assessments planning; consumer participation and assisted decision making; funding and service responsibility splits; and management of shared service areas such as service coordination and therapy.

116

To implement the joint planning methodology

Health services will identify specific staff who will become proficient in NDIS processes, engage in planning preparation and attend planning meetings with patients
Health services will to be supported to develop a planning preparation tool to identify clinical and disability support needs; and identify service responses
NDIA planners become virtual members of the health team for the planning process so that a comprehensive sharing of information and expertise occurs.

Principle 5: Integrated service implementation Implementation of integrated services will be monitored by both the NDIS and the health service

An integrated service plan with agreements to fund and deliver both health services and disability supports, will require a joint monitoring approach to ensure that services are being delivered correctly, that goals are appropriate and that providers are being managed correctly.

This role is critical to ensure funders take a lifetime support approach and monitoring and review informs subsequent plans. Competent service coordination will enable good communication between the actors.

The person with complex needs and their family has a key role in the monitoring of services and will be involved to their preferred extent in decisions and processes.

Escalation pathway

“ Young People In Nursing Homes National Alliance

118

Draft escalation Pathway for people identified as complex The escalation pathway offers practical guidance for health services staff supporting patients with complex needs to navigate the NDIS and to access the NDIS supports they require during their hospital stay or on discharge to the community. A map of the escalation pathway is included on page 118.

Definition of complexity In this context, 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 of 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.

Integrated services from health services and the NDIS must be coordinated to enable effective support to be delivered to the person.

119

Early identification of disability Identification of disability and need for NDIS support must be made as early as possible in the admission process. This could be through self-‐ disclosure or via diagnosis by the treating team.

Health services will need to adjust their intake or admission processes to identify whether the patient will need, or is already in receipt of NDIS support.

For individuals new to the NDIS, assessment of a disability that is permanent (or likely to be permanent) during admission will enable the NDIS access process to be initiated. The level of disability must, however, be established by the time of the NDIS planning meeting.

Delaying NDIS access requests until the person is ready for discharge can result in longer hospital stays where safe discharge requires funded disability supports to be established.

Patient liaison with the NDIS Patients will be asked to provide their consent for the health services representatives to speak with the NDIS, about either their application for entry to the scheme; or to request a plan review to take account of changed circumstances and support needs following hospitalisation.

Where patients require support to engage with the NDIS, it is recommended that a health service staff member or close family member be listed as a “contact” on their NDIS file.

Adding a contact can be done when initiating the access process over the phone or by listing a contact on the ARF. This provides authorisation for the appointed contact to speak with NDIS on the patient’s behalf. People already receiving NDIS supports can call the NDIA and ask for the contact to be added to their file.

120

Abbreviations referred to on the escalation pathway map ARF Access Request Form. Establishes eligibility to become an NDIS participant. Requires proof of age, residence (including citizenship or visa status) and disability (or the need for early intervention supports).

SC Support Coordinator. Undertakes capacity building support with participant to implement all supports in a participant’s plan, including informal, mainstream, community and funded supports.

HS Health service: services delivered in and by the acute hospital arm of the health service

KW Keyworker. Member of the health service whose job it is to facilitate collaborative engagement with the NDIS; and help the patient to access or navigate the scheme.

LAC Local Area Coordinator. LACs undertake various roles that can include

Information provision; accessing the NDIS; undertaking planning, plan implementation and plan review processes; linking NDIS participants to information and support in the community.

MDT Multi Disciplinary Team. Health professionals from a range of disciplines such as psychiatry, social work, neurology, physiotherapy et al, working together to deliver comprehensive care that addresses as many of the patient’s needs as possible.

NAT National Access Team. NDIA team that handles all access requests.

SEF Access Request Supporting Evidence Form. Establishes eligibility to become an NDIS participant where a patient has not previously accessed a ‘defined disability program’. Requires evidence from a health or education professional regarding level and permanence of impairment and how it impacts daily life (level of functional impairment). Reports from allied health staff can be attached. Listing medical conditions alone will not constitute sufficient evidence and could lead to the patient being rejected for NDIS supports.

YPINH Young People In Nursing Homes National Alliance

121

NDIS regional email addresses Requests for a planning meeting should be emailed to the NDIS regional office. NDIS regional email addresses are prefixed by the region. For example, vicnorth@ndis.gov.au or viceast@ndis.gov.au

Defined programs People in receipt of state disability services are considered to be on a ‘defined’ program and are not required to provide further proof of eligibility to access the NDIS.

Defined programs include:

•   Individual support package (ISP)                                   •  Outreach Support

•   Disability Support Register (DSR                                   •  Independent Living Training

•  Futures for Young Adults                                         •  Case Management (Case Management meeting guidelines

•  Supported Accommodation                                        under the Disability Act 2006 (Vic)

•   Residential Institutions                                           •  ECIS or ECIS Waitlist

•  Community Respite                                              •  MHCSS – Adult Residential Rehab Services

•   Facility Based Respite                                            •  MHCSS – Individualised Client Support Packages

•  Therapy (complex therapy meeting guidelines under the              •  MHCSS – Supported Accommodation Services

Disability Act 2006 (Vic)                                          •  Outside School Hours Care for Teenagers with Disability

•  Behaviour Intervention Services                                   •  Remote Vision and Hearing Services

•   Flexible Support Packages                                        •  Younger Onset Dementia Key Worker Program

122

Escalation Pathway for people identified as complex

Person already has a plan

Refer to review process on NDIS

website Person is on

defined* program - lives in phased or phasing area

Person on

5; undefined biter program or has a new disability

lives in phased or phasing area

Person in non phased area — with either new or existing

disability

DHHS may support

priority entry to NDIS

“ew

Next steps

“ Young People In Nursing Homes National Alliance

124

Next steps In the second half of the project (February to May 2018) the Alliance will:

Discuss the systemic themes and key challenges identified in the interim draft report with health services and collaboratively develop potential solutions to ameliorate these issues. This work will be undertaken primarily with Monash and St Vincent’s Health services.
Trial the use of the collaboration principles and escalation pathway process with the health services, working with 6 individuals with complex needs; documenting the key process issues and outcomes. The Alliance will mentor the staff teams who are working directly with these individuals to develop the capacity of the teams working with complex patients and the NDIS . The Alliance will also encourage health services staff to disseminate new knowledge and skills developed to other areas of their organisations.

The Alliance will specifically work with health service teams around the key steps in the pathway, including: § Access, § Pre-‐planning § Planning/review and § Implementation phases

NB This project has only 3 months remaining to trial these approaches and prepare a final report. Given this time limitation, it may not be possible to document the end-‐to-‐end pathway experience for each selected patient. The Alliance will, however, scope the knowledge base of the health services teams at the beginning and end of the case study process to establish capacities developed as a result of the project’s work.

Refine, update and socialise the principles for collaboration, escalation pathway and pre-‐planning template subsequent to the findings from the 6 case studies.

125

In collaboration with Monash and St Vincent’s health services, develop key considerations for working with people whose discharge destination pathway is unknown, especially if residential aged care is a potential option. The Alliance will develop a proposed pathway process following the collaboration.
Work with Monash and St Vincent’s health services to identify possible projects they may wish to undertake to support them in developing best practice in relation to individuals with disability and complex health needs; and/or to develop a viable pathway for NDIS participants who may need to access aged care services as an interim discharge option.
Produce a final report including recommendations and next steps.

Sector Development Fund Project Interim Report