Submission regarding NDIS planning processes and transparency

ROUNDSQUARED SUBMISSION TO JOINT STANDING

COMMITTEE ON THE NATIONAL DISABILITY INSURANCE

SCHEME — NDIS PLANNING

roundsquared

INTRODUCTION |

roundsquared is an independent peer organisation providing flexible and responsive support, mentoring and consultancy to people living with disability and families of people living with disability. A key focus of roundsquared is to assist our members (not referred to as clients) lead good lives through improving opportunities for social, economic and cultural inclusion as well as access to supports that will enhance their functional capacity. roundsquared consultants work with the individual and their family to utilise their NDIS funding in the most effective manner to achieve their goals and to facilitate access to appropriate mainstream and community resources and services. roundsquared also supports members through crisis resolution and with building self-advocacy skills. roundsquared is a for purpose company: i.e. since our establishment we have distributed our surpluses to members and employees. From March 2019 roundsquared is donating 50c from each invoice we process on behalf of our members to overseas charities.

roundsquared has 256 members ranging in age from 3 to 65years with disabilities across the spectrum including physical, intellectual, cognitive and psycho-social; many having multiple and complex needs. Our main office is located in Moruya with the majority of our members located in southern NSW (Eurobodalla, Bega, Illawarra, Shoalhaven and Southern Highlands LGAs). Members, consultants and support workers are also located in greater Sydney, Central Coast and Northern Rivers. All our consultants have several years’ experience in the disability sector, many with their own lived experience of disability or as the parent/carer of a person with disability. Three of the roundsquared consultants are experienced LACs who have provided an insight into the training and other issues for planners.

roundsquared considers the principles informing the NDIS provide the basis for a more inclusive society for people with disabilities in Australia — a society informed by a human rights framework where individual agency and choice and control are pivotal to effecting Australia’s obligations under the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). roundsquared, however, believes the NDIS has lost its way with political, economic and bureaucratic expediencies taking precedence over the needs of participants as evidenced by more participants receiving reduced funding in the plans; the increasingly unrealistic perspective of planners in relation to parental responsibility to provide support to their child/children with disabilities; the long lead times for home modifications and larger assistive technology items; and the rising number of requests for reviews of reviewable decisions and AAT applications. Underpinning these concerns is the increasing dominance of an insurance paradigm at the expense of the human rights of the person with disability and their families/carers and the lack of transparency in relation to the decision making processes informing the construction and funds allocation to participants. It is worth noting here that the language used by the NDIA and its Partners in

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the Community such as Uniting and Feros, reflects the insurance mentality, as even in their morning meetings of either LACs or Planners these are referred to as ‘huddles’ or ‘scrums’. A question that has been posed many times before and would appear particularly relevant here is “Do we want to live in a society or an economy?”

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EXECUTIVE SUMMARY

The National Disability Insurance Scheme was heralded as the most

significant social policy initiative since the introduction of Medicarein FO undsqua red the 1980s. The NDIS Act 2013 not only gave effect to Australia’s oe’ obligations under the Convention on the Rights of Persons with Disability, but for the first

time provided a national framework for the delivery of supports and services to people with disability to enable them to maximise their independence, enhance their social, cultural and economic participation and raise community awareness to facilitate inclusion.

Six years on from the NDIS Act 2013 receiving Royal Assent, the Scheme is falling short on its promises to people with disability and their families/carers. This is not to say that there are not positive stories about how the Scheme has changed a person’s life for the better facilitating their social and economic participation. For many, however, the NDIS has been a minefield of bureaucratic inconsistencies and incompetence as planners and local area coordinators (LACs) fail to provide a person-centred approach to the planning process. What many are experiencing is a bureaucratic data-focussed approach that lacks transparency both in terms of its decision making process and assumptions about the functional capacity of particular disabilities and the level of support that should be provided. Information provided by different planners and LACs lacks consistency and is evidence of a fundamental problem in information flow between the Agency and its Partners in the Community. There is also no consistency with other Federal Government programs with participants and their families being caught between the expectations of Centrelink and the NDIS. Poor communication underpins the lack of transparency and inconsistent information and is one of the major factors contributing to the high number of s48 requests and applications to the Administrative Appeals Tribunal (AAT).

From roundsquare’s perspective, the current NDIS planning processes are not informed by a human rights framework. Rather they are increasingly underwritten by an insurance paradigm focussing on data collection; the need for increasing evidence of disability with undertones that the participant is ‘ripping off’ the system; and reducing funding obligations for services and supports by: e Placing increasing burdens of support on families and other informal supports; e Reducing core supports to children under 15 years under the guise that such supports are a parental responsibility; e Failing to be transparent when claiming a support is not ‘reasonable and necessary’; e Failing to advise participants that their application for a s48 review has been successful; e Letting the wait times for s48 reviews continue to blow-out to a point where it is now 9 months; and e Coming to an agreement with a participant or their representative just prior to an AAT hearing to avoid a precedent being created by a successful appeal.

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BACKGROUND

The National Disability Insurance Scheme (NDIS) was heralded as the most significant social reform since Medicare when the NDIS Act 2013 received Royal Assent on 29 March 2013. Three years of pilots ensued, with the national rollout commencing on 1 July 2016. Three years on and participants, families and organisations have repeatedly called for improved transparency in the NDIA decision-making process; consistency of information; a genuine person centred approach; more respect and support for families/carers; and timely responses to review requests. roundsquared strongly supports these calls.

During the 2019 Federal election campaign PM Morrison promised a new participant planning pathway and NDIS Participant Service Guarantee to streamline processes and reduce waiting times for reviews. With the Coalition’s re-election, the PM announced the new Ministerial position of Minister for NDIS - with Stuart Robert to take on the role. It is within this context that Every Australian Counts sought the views of community organisations and individuals as to ‘what his first priority should be’ to get the scheme ‘back

on track’. roundsquared responded to this request with the top three priorities identified by

roundsquared consultants being:

1. The urgent need for recruitment and retention strategies to improve access for participants to allied health professionals (AHPs) including psychologists, behavioural therapists, OTs and speech pathologists across rural and regional areas to ensure timely assessments and regular therapy sessions in accordance with their plans;

2. The need for greater transparency of NDIS administrative processes and consistency of information from LACs, planners and the Agency to participants, their families/carers and support organisations

3. The need to improve significantly the turnaround times for requests for unscheduled reviews due to changes in circumstances or the failure of a plan to provide adequate funding to enable participant to work towards their goals.

Underpinning these priorities roundsquared consultants identified a range of other issues impacting on the efficacy of the scheme including the need for:

e a fundamental change in the culture of the NDIA and its Partners in the Community to ensure greater transparency of decision making and funding processes;

@ agenuine person-centred approach to the planning process; greater respect for the role of parents/families support people with disabilities; improved training of planners and LACs about the functional capacity of different disabilities;

@ more accessible public housing in rural and regional areas with streamlined processes developed to ensure home modifications identified in the planning process are undertaken; and

e animproved participant pathways for people with psycho-social disability to reduce

the number falling through the cracks resulting in crisis interventions and admissions

to mental health units. [A copy of the roundsquared response is at Attachment A].

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roundsquared makes the following submission in relation to NDIS Planning and will make comments on all the following points:

a) The experience, expertise and qualifications of planners; b) the ability of planners to understand and address complex needs; c) the ongoing training and professional development of planners; d) the overall number of planners relative to the demand for plans; e) participant involvement in planning process and the efficacy of introducing draft plans; f) the incidence severity and impact of plan gaps; g) the reassessment process, including the incidence and impact of funding changes; h) the review process and means to streamline it; i) the incidence of appeals to the AAT and possible measures to reduce the number; j) the circumstances in which plans could be automatically rolled-over; k) the circumstances in which longer plans could be introduced;

1. the adequacy of the planning process for rural and regional participants; m) any other related matters. a) The experience, expertise and qualifications of planners;

Box 1 — Planner Position Description

From roundsquared’s experience with NDIA planners and the local area coordinators engaged by the Partners in the Community, it would appear that the experience, expertise and qualifications of planners and LACs may well be suited to the bureaucracy but fall short of an understanding about the range of disabilities; the scope of functional capacity related to particular disabilities; the inter-relationship of disabilities eg intellectual and psycho-social disabilities; and the impact of the caring role on families. This is hardly surprising when the position descriptions and personal qualities/attributes sought for planners (APS4 & 5) within the NDIA are considered. There is no requirement for applicants to have qualifications in the areas of disability, mental health, early childhood development, rehabilitation or community/ health education to undertake these positions. The emphasis is on administrative tasks such as gathering information, determining supports, completing and reviewing plans as per Agency

s an APS 5 Planner, you will:

guidelines and processes and contributing to the achievement of KPIs (see Box 1).

Some examples of the lack of knowledge displayed by planners include: e Aplanner questioning why a woman with advanced MS would need continence aids;

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e Streaming as ‘general’ 2 sisters in their 20s with the genetic condition, spinal muscular atrophy;

e Aplanner refusing transport assistance but funding travel training in a rural area where public transport is all but non-existent.

Box 2 LAC Position Description

The skills and abilities required by Uniting for applicants for the positions of Local Area Coordinators (LACs) are similarly light on in terms of qualifications and experience in the fields of disability, mental health or early childhood (see Box 2).

Key responsibilities included:

By comparison applicants with tertiary qualifications in law, rehabilitation, physiotherapy or occupational therapy were sought by Allianz for their claims consultants, with demonstrated experience in problem solving, assessing health claims, and having a mindset that ‘allows you to work in our customer’s shoes’. (www.allianz.com.au/careers))

With the successful applicants expected to have the ‘ollowing skills and experience:

To address this situation the following could be considered:

e Make qualifications in allied health, nursing, rehabilitation, mental health and health education as highly desirable in the selection criteria for NDIS positions

e Provide staff incentives to undertake further study to understand the nature and scope of disabilities e.g. Cert IV or Diploma of Mental Health, Cert IV Mental health peer Work, Cert IV Allied Health Assistant Course as well as short courses or on-line courses on e.g. mental health recovery, assistive technology, autism and early onset dementia

e Develop Communities of Practice to promote learning opportunities for LACs and Planners in relation to understanding the nature of different disabilities; the trajectory of degenerative conditions; the social, economic and health impact of caring; assistive technology advances and their applications etc

What also warrants consideration here is whether having a partnership with community organisation has been effective, or whether it has provided a cheaper workforce option to roll-out the NDIS, as well as an opportunity for the ‘buck to be passed’ to the LAC employed by the Partner organisation when complaints or issues arise. Such a dichotomous situation also places the Partner organisation in a position where they are unlikely to challenge decisions in relation to the administration the scheme because their contract could be terminated. Currently NDIA Partners in the Community only have a contract to provide LAC and community capacity building services until 30 June 2020. This situation makes it difficult for them to attract and retain staff when their employment contracts are for just 9 months.

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b) the ability of planners to understand and address complex needs The NDIS Act 2013 focusses on setting goals and building capacity rather than focussing on the disability and providing supports. This ‘positive’ focus underpins the Act and the administration of the scheme and would also appear to inform the selection process for planners and LACs with the skills sought to be of a generic administrative nature rather than a working knowledge and understanding of different disabilities. Such a focus runs the risk of minimalizing the impact of the disability on everyday activities for the individual and their family. This is why it is important for planners and LACs to have a comprehensive understanding of a broad cross section of disabilities [or a willingness and time to research the impact of a disability on functional capacity] to ensure that during the planning process they are able to ask questions pertinent to the participant’s situation and record this appropriately. Such an approach is person-centred rather than a generic bureaucratic response based on tick and flick questions. Planners and LACs need to be cognisant of how stressful the planning process can be for participants and their carers, and that a series of generic questions of little relevance to their situation is confusing and disrespectful.

Another issue of relevance here, that I shall elaborate on further in under topic (e) is the need for participants, parents and carers to be able to see their Participant Conversation Template (PCT) of their plan. Currently this is only provided via an FOI Request. The PCT is the most important part of the planning document as it is within the PCT that the LAC and/or planner provide justification for particular supports and funding, as well as identifying options for mainstream supports (e.g. GP Mental Health Care Plans) or community supports. A well written PCT reflects a person-centred approach as it provides information about how the participant’s functional capacity is impaired, and what supports are recommended to enhance the participant’s functional capacity thereby improving mobility, community access and participation, communication etc and thereby their achievement of their goals. The PCT also draws on the reports of the health professionals and others (eg school reports) to provide further information on any impairments and justification for how particular supports would benefit the participant. Participants and their families need to be able to access this part of their plan to ensure that information is recorded fully and correctly and also to be able to identify any underlying assumptions informing the supports to be provided. A lack of understanding about the impact on the person of a particular disability can mean that the funding provided to access services falls far short of the need for those services, and this can mean that the participant’s goals are not achieved, or in a worse-case scenario their safety is compromised.

If the NDIS is also to be transparent, participants need to be aware of how they have been streamed as this impacts also on their level of funding and their access to support coordination. Arguments against providing participants such information are more concerned with protecting the NDIS decision making process and reducing potential comparisons between participants.

Even with administrative tasks, many planners require additional training so that they can write plans that are easily read, not confusing and logical in the sequencing. In other instances it is apparent the LAC or Planner has simply cut and pasted from someone else’s plan and hasn’t even changed the name.

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The area of psycho-social disability highlights a lack of understanding on the part of planners and LACs. The ‘episodic nature’ of mental health conditions and the concept of ‘recovery’ are poorly understood by planners. The episodic nature refers to periods when the escalation of symptoms occurs – it does not mean that the underlying mental health condition is not present. However, this misinterpretation has resulted in many people with lifelong conditions such as bi-polar disorder, schizophrenia, borderline personality disorder and PTDS failing to gain access to the scheme. The stress of the application process often deters people with mental health conditions from reapplying resulting in a lack of access to services and supports that can lead to crisis situations. Many physical disabilities such as MS can have symptoms that are episodic particularly in the early stage but they are not denied access to the NDIS. As has been the case historically, physical health and disabilities are far better understood and responded to than mental illness and psycho-social disabilities. Such a dichotomous approach to the determination of access to the NDIS and to the supports available to participants does not reflect a person-centred approach to the needs of the individual to enable them to enhance their functional capacity through access to services and supports to reduce their social isolation and enhance opportunities for social, cultural and economic participation. The following case study illustrates some of the difficulties experienced by people with mental health conditions accessing the NDIS.

Case Study 1

Joan (not her name) has been diagnosed with PTSD, depression and anxiety. She has a partner and a son who are both participants of the NDIS. Joan has been denied access to the NDIS because she will not give the history of why she has developed PTSD. She has provided reports from her GP, psychiatrist and psychologist. Joan is unwilling to reapply as she does not want to be told yet again that she must re-live her trauma in order to access support. Such a determination shows a complete lack of understanding by the planner of the nature of PTSD and is not consistent with either providing a person-centred or a trauma-informed approach to the planning process. It is also falls short of being informed by an understanding of what recovery is.

The Mental Health Coordinating Council (MHCC 2018) has published a Recovery Oriented Language Guide that all Planners and LACs should read to improve their understanding of how to use a recovery focus in communications with people with mental health issues. It states: ’Whatever a person’s stage of life, mental health and human services should be familiar with language that reflects a recovery oriented approach to practice, and have an awareness and understanding of the prevalence and impact of trauma, which may have resulted in a range of psychological difficulties, and have awareness of the ways in which this may present.’(MHCC 2018:p.4)

To address this situation the following could be considered:

• Promote learning culture within the NDIA and Partners in the Community to enable planners and LACs to adapt to changing policies and procedures. The current culture concentrates too much on KPIs in terms of number of plans completed to the exclusion of person-centred quality plan development; and

• Provide training in report writing for planners to reduce the confusion for participants, families and support coordinators with the content of plans; and

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• Provide every LAC and Planner with a copy of the MHCC’s Recovery Oriented Language Guide to improve their understanding of how to use a recovery focus in communications with people with mental health issues.

c) the ongoing training and professional development of planners; Over recent months roundsquared has made a number of complaints to the NDIA about the work and comments of planners to our members. The issues raised in these complaints would indicate that there is a need for more training across a range of issues to ensure consistent information and transparent processes are involved in the decision making process. Planners would also appear to have limited knowledge about the nature and scope of particular disabilities and conditions including mental health; Australia’s obligations under the Convention on the Rights of Persons with Disabilities; child and adolescent development milestones; reasonable parental responsibilities and trauma informed care.

Pathway training provided to newly recruited LACs and Planners also needs to enable more hands-on interface with the system via the creation of case studies to enter information into the system. The theoretical approach without practical application is not a very effective adult learning approach.

To address this situation the following could be considered:

• That trainers of LACs and Planners have appropriate train the trainer qualifications (minimum Cert IV T&A) as well as a broad hands-on knowledge and experience of the NDIS processes and working with people with disabilities and/or their families/carers. An understanding of the local community services and health environment should also be sought.

• That ‘dummy case profiles ‘ be developed in the pathways training to enable newly recruited LACs and Planners to put their theoretical training into practice.

The most urgent need for training, however, is in the area of mental health. Planners and LACs need to have a good understanding of the concept of recovery and to be able to provide a planning environment in which the person is relatively at ease and able to discuss in a non-judgemental way their situation. Recovery emphasises the importance of social inclusion and access to services and supports.

To address this situation the following could be considered:

• roundsquared believes that LACs and Planners need to receive specific training in how to provide recovery-oriented first plan or plan review meeting (see MHCC

(2018) Recovery Oriented Language Guide )

• another consideration could be to have a mental health peer worker role within the LAC/planner team to improve their understanding of recovery, social inclusion, stigma and how mental illness can impact on the participant’s physical health, economic and employment status and their social and community engagement. Such a peer could provide invaluable insights into activities and supports within the community and information on-line and in apps to support participants.

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Other areas where LACs and Planners require training include in relation to the autistic spectrum, acquired brain injury, early onset dementia and co-morbidities such as intellectual/psych-social disability; psycho-social and physical disability and the scope of assistive technology.

d) the overall number of planners relative to the demand for plans; roundsquared operates predominantly in rural and regional locations. Recruiting and retaining skilled staff can be challenging particularly in the areas of health, disability, aged care and education as evidenced by 25 Regional Coordinators being appointed under the Building the Local Care Workforce (BLCW) Project to help local organisations build sustainable businesses and grow their workforce under the National Disability Insurance Scheme (NDIS).

Lack of qualified staff would also appear to be an issue for the NDIA and its Partners in the Community in rural and regional areas. From roundsquared perspective Southern NSW would appear to have a shortage of planners given the long waiting times for unscheduled reviews with some participants waiting nine months. The situation has been exacerbated in Batemans Bay by the loss of 4 LACs and a Team Leader from Uniting between September 2018 and June 2019, with another LAC transferred to community capacity building role. This leaves only 2 LACs to cover the area from Durras in the north to Wallaga Lake in the south. This is of concern for our roundsquared members as they are likely to have their planning conversation with an LAC brought in from another area to assist the under-resourced Batemans Bay office. This surely does not fit comfortably with the PM’s promise for a single point of contact for NDIS participants.

Evidence of the strains in the Eurobodalla can be seen from the following cases where participants have not been told that their plan has been approved or where LACs do not respond to requests for ‘light touch’ reviews in a prompt manner.

Case Study 2

Billy (alias) is a 15 years old Aboriginal boy with cerebral palsy and mild intellectual disability. CP affects his left side resulting in a significant limp, balance issues and easy tiring. To date his CP has been managed by the Randwick Children’s Hospital where he has received Botox injections to reduce tendon rigidity and physiotherapy to build his strength to reduce falls. Randwick Children’s Hospital advised the NDIS of his situation and his mother was contacted for a first plan meeting. Billy has been waiting to reach puberty so that he can have an operation to correct the turning in of his left leg to reduce his falls and improving his mobility/flexibility. The operation will require a week in hospital in Sydney and 6 weeks in a caste using a wheelchair at home to ensure no weight is put on the hip. Billy’s mother was contacted by the NDIA, with reports and EOD provided by the hospital. His first plan meeting was held in Moruya in late September 2018 with a LAC from Uniting. The meeting lasted just over a half an hour. Billy was present at the meeting. At the meeting LAC told Billy’s mother he preferred to talk to Billy as it was his plan. She found this quite disrespectful. She tried to explain to LAC the need for some flexibility in his Plan due to the operation on his hip and leg. LAC’s response was that the NDIA can’t be continually changing plans. LAC provided her with his phone number and said that the Plan would be ready in a couple of weeks. When she did not receive the Plan she tried repeatedly to contact LAC but his phone was never answered. As a result of not knowing what was happening with his plan, Billy’s surgery was delayed as they needed to be sure that physiotherapy was available to him after the surgery to assist him to relearn to walk etc. Billy’s mother tried ringing LAC for months and to no avail, finally catching up with him in July 2019. When she asked him about Billy’s plan, he said he couldn’t recall and would check his computer. A Roundsquared Submission JSC on NDIS 05092019 10

meeting was arranged for 18 August. At this meeting she received a copy of Billy’s plan dated 10 October 2018. This Plan was not only provided 9 months after it was approved but the Plan was also made out for 2 years when (a) it is a First Plan for a child under 15 years and (b) when the participant’s mother had emphasised to the LAC that Billy’s needs would change as a result of the surgery. Billy’s mother inquired whether the LAC had received an email from the Randwick Children’s Hospital. He said he hadn’t. She then rang the hospital while she was with him and he suddenly found their email. At this meeting with him, he said that he would see about a Review. Billy’s mother have again called him many times about such a review but he does not respond. It would appear that in recent months the LAC has been moved to a different position within Uniting. This however does not negate the responsibility of the LAC team in Batemans Bay/southern NSW and the NDIA Planner to respond to the mother’s requests. roundsquared has lodged a Complaint with the NDIA over the handling of this case.

Case Study 3

Barry’s a man in his fifties with a lower leg amputation. He is still working and loves to swim with the family. His current prosthetic limb does not drop down to allow him to put a flipper on and swim, and this hinders him from fully participating in the beach or pool activities with his family. He needs greater flexibility of the ankle so that it can articulate the foot. To achieve this Barry would require a Freedom Innovation swim foot and replacement socket. The cost of this Water Limb Socket Replacement + Ankle: $9xxx but only $5xx was provided for assistive technology. On 10 June 2019, roundsquared sought a ‘light touch’ review to enable the purchase of the swim foot and socket. No response has been forthcoming from the LAC as to whether a light touch review has been sought and/or if it has been successful. On 27 August 2019, roundsquared again emailed the LAC stating: ‘To date, Barry has heard nothing in regards to the matter and it is now urgent. If you recall we did discuss a light touch review at the time to ensure that the items/report below were included.’ To date there has been no response and the time is running out for a light touch review to be undertaken i.e. within 3 months of the plan start date.

The purpose of the ‘light touch’ review is to ensure that funding for items or services that have been overlooked in the plan can be quickly adjusted without the need for a full review. The request for a ‘light touch’ review should have been forwarded immediately by the LAC with a response – either positive or negative – received within a matter of days. Whether

the  light touch review request was not done because  of work pressures or  staff

incompetence, the impact is the same – the participant does not know where they stand and whether they are going to be funded for an item that enables them to achieve the goals in their plan.

e) participant involvement in planning process and the efficacy of introducing draft plans; Section 31 of the NDIS Act 2013 outlines the principles relating to plans:

The preparation, review and replacement of a participant’s plan, and the management of the funding for support under a participant’s plan, should so far as reasonably practically: (a) Be individualised; and (b) Be directed by the participant; and (c) Where relevant, consider and respect the role of the family, carers and other persons who are significant in the life of the participant; and (d) Be underpinned by the right of the participant to exercise control over his or her own life; and (e) Maximise the choice and independence of the participant; and (f) Facilitate tailored and flexible responses to the individual goals and needs of the participant; and (g) Provide the context for the provision of disability services to the participant and, where appropriate, coordinate the delivery of disability services where there is more than one disability provider Roundsquared Submission JSC on NDIS 05092019 11

For many participants and their families/carers these principles are in theory only and are difficult to relate to their experience of the planning process. roundsquared members and consultants have expressed concern about the lack of transparency in terms of why funds have been reduced significantly from the previous year or why certain supports or items have not been funded based on ‘reasonable and necessary’ criteria.

Greater transparency would be provided by making what was recorded by the planner or LAC available to the participant and/or carer. This would provide the rational as to why funds for different services and support were recommended for funding and others were not. Currently the full planning conversation is only available via FOI request. It would enable the participants to determine whether all the relevant information had been recorded properly or had been misinterpreted. Without greater transparency it is too easy for planners to hide behind the words ‘reasonable and necessary’, using them as a catch-all to queries about why funds were cut or not provided in the first instance and to hide behind bureaucratic jargon. Even when planners do provide a fuller explanation, participants have said that they have been made feel as though they are trying to rip off the system and have compared this to their experiences when dealing with Centrelink. Participants need to be able to interrogate the reasoning and justification to ensure that it is not based on false assumptions or prejudices such as what a parent should do for their child.

Since the introduction of the new planning format where goals were not simply outlined but the process by which (i) these would be achieved and (ii) how the participant would be supported were also outlined. On the surface this appear to be a worthwhile exercise. The reality is, however, that this is quite a complicated, time-consuming and not necessarily logical process for the majority of participants. The assumption underlying this change would appear to be that participants and their families/supporters would develop their goals and how they would achieve these, prior to the planning meeting. This is, in fact, a very unusual occurrence with even goals poorly articulated in terms of the NDIS requirements. This is particularly the case where the participant does not have a support coordinator to assist them through the process. The result in many cases is that the LAC or Planner writes or ‘reinterprets’ the goals and then fills in the process to achieve these goals and the supports required after the meeting.

An example of such ‘editing’ is provided by this mother of a 16 year old boy who experienced such extreme anxiety last year that he was unable to participate in work experience. His short term goal, as expressed during the planning meeting, was to be able ‘to participate in activities and programs to enable him to undertake work experience. However, as his mother pointed out in a letter of complaint, this short term goal

‘has been watered down to a medium term goal of “volunteer work” when it is critical to his development to be included in work experience. Work experience is a part of the school curriculum, but being external to the school and off campus, the Department of Education is limited in the support available off campus. The school is already putting into place all the support within their purview. What Ben (alias) needs, and was stated as a goal, was to be supported in activities to get to a place, emotionally, where he can engage in the program, and when participating, have a support worker who can assist in the transition to off campus work experience. This goal needs to be met before term 4 of this school year, 2019.’

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In another instance a mother of a participant reported that as she read through the plan for her son she wondered how much attention the LAC had been giving to what she said. For example, under the longer term goals, goal 2 states:

‘I would like to increase my capacity to complete writing my book.’

The mother attests that her son has a mild intellectual disability and has enormous difficulty reading. He did not say in the meeting that he wanted to write a book. He has learning difficulties but there was also no recognition of this in his Plan.

Other instances have been reported where it is obvious that the LAC has cut and pasted from another participant’s plan, and hasn’t even taken the time to change the names involved. This example and the ones above do not support the contention that the preparation of plans is ‘individualised’ or ‘directed by the participant’. What would appear to be the reality is that in an effort to keep the planning meeting to 90 minutes that short cuts are occurring, so that the administrative requirements are fulfilled rather that the person centred principle followed.

From discussions with LACs there is growing concern that the NDIS is increasingly data centred at the expense of providing a person-centred focus. LACs are increasingly reporting the tight time frames in which they are required to complete the planning conversation and then write up the plan including recommendations based on the reports of therapists and others as well from information from the participant/family due the interview. This is do able if the situation of the participant is stable and their disability issues not too complex. Where there are significant changes in the living situation or functional capacity status; or when there are requirements for home modifications and assistive technology, it is difficult to develop a plan that takes into account all of these different variables.

Several examples exist of the role of the family, carers and other persons who are significant in the life of the participant not being respected or validated. Planners in southern NSW are making value judgements about the level of support that should be provided by parents to children, particularly those over 10 years, without due consideration for the family dynamics or what level of support would be provided by parents/carers to a child of a similar age without a disability. An example of this disrespect is evidenced in Case Study 4 below.

Case Study 4

Henry (alias) is an 11 year old boy with a complex range of issues including autism, ADHD, dyslexia, anxiety and depression, left sided weakness and global growth delay. He experiences difficulties with learning and monitoring his emotions resulting in angry outbursts and temper tantrums. In his 2018 19 Plan, Henry received funding of $21, 000 of which $9500 was in Core supports. These core funds were mainly used to engage a support worker for 2 hours a week to ‘explore and participate in community based activities of interest and to develop, build and maintain friendships’. The support worker worked with Henry on a Friday afternoon after school taking him to different activities. Henry enjoyed this time and it provided the basis for better interactions with the family over the weekend. This Plan also provided $5795 for capacity building supports (improved daily living) to ‘engage allied health professionals for skills development, training , assessment and therapy.’ Last year this was used for fortnightly speech therapy and a 12 week course with a behavioural therapist that cost $3500. Henry’s mother was hoping to be able to access this again for Henry and possibly the behavioural therapy for 24 weeks. Henry is currently repeating Year 5 due to problems coping with year 6 in the initial weeks of Term 1. Roundsquared Submission JSC on NDIS 05092019 13

In June 2019, a NDIA planner, Batemans Bay told Henry’s mother and a roundsquared support coordinator that he ‘would not be receiving any core supports in his new Plan …and as he is 11 years old’ and, ‘this is the parents’ responsibility, not the government’s.’ She indicated that there would be some increase in his capacity building budget. This meant that his overall funding fell from $21,000 to $12,000. This decision was made despite his OT, speech pathologist and counsellor all having highlighted areas where Henry was having difficulties and required on-going interventions. While the increase in capacity building funds from $5795 to $8425 (+$892 for 6 sessions with an exercise physiologist) will enable access to on-going therapies, the loss of the core support funding means that there is no opportunity for Henry to put these skills into practice by accessing the community with a support worker. Shortly after receiving a copy of Henry’s Plan his mother contacted the planner’s supervisor. The supervisor supported planner’s perspective and told the boy’s mother: ‘You have become dependent on this funding. You had the child and he is your responsibility’. She also went on to say words to the effect that ‘there had been a meeting of NDIA planners the day before and that the direction from above had been to provide no more core funding for children under 15 ’. Such an assertion does not appear to reflect the social model of disability embraced by the United Nations Convention on Rights of Persons with Disabilities (UNCRPD) – a Convention that rejects stereotypes and prejudices relating to people with disabilities including those based on age and sex. The planner and supervisor’s comments would also appear to be contrary to paragraphs 12 and 16 of Section 4 of the NDIS Act – General principles guiding action under this Act, that state:

12. The role of families, carers and other significant persons in the lives of people with disability is to be acknowledged and respected. [and]

13. Positive personal and social development of people with disability, including children and young people, is to be promoted.

The comments made by the supervisor do not reflect current community attitudes towards supporting the caring role of families of a child with a disability. To be told that ‘you had the child, he is your responsibility’ suggests a victim blaming mentality designed to blame and shame the mother for the child’s disability. As such this is deeply offensive to Henry’s mother, family and to all the membership of roundsquared. Henry’s mother has her own health issues as well as two other children. She did not need such thoughtless and prejudicial comments to be made to her to undermine her confidence in her parenting abilities. This also raises the questions as to whether such a comment would have been made to a father or would an assumption about his need to work have been accepted. Henry’s mother also stated that the sections on ‘how I will be supported’ were not raised in the planning meeting but were filled-in by the planner after the meeting.

To address this situation the following could be considered:

• That participants to be provided with a copy of their draft plan prior to its final approval to ensure that details recorded reflect the planning conversation with the LAC or planner and in particular that the goals and their means to achieving them are in accordance with what was stated by the participants or their carer.

• That participants, can on request, access their PCT to better understand the rational informing the allocation of funds for their plan.

f) the incidence severity and impact of plan gaps; The impact of plan gaps at its most simplistic means that people are unable to achieve their plan goals and at their worst it can be life threatening for the participant and or the family involved. Plan gaps can mean frustration, loss of motivation, anger, despondency and can lead to feelings hopelessness or of not being trusted.

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Case Study 5

Kia (alias) is a 14 year old Aboriginal girl with complex PTSD and a range of challenging behaviours including emotional instability, self-harm, property damage, verbal and physical aggression and unintentional self-risk. In 2017-18 Kia received $22,500 in core support and another $24,000 in capacity building supports. On 10 October 2018, Kia’s 2018-19 plan was approved but her core funds were reduced to $5725 with $20000 allocated for capacity building. As a result of the significant drop in core funding the family was put under considerable financial stress as her mother had to reduce her working hours to be available to supervise her in the community and after school. Kia became increasingly isolated and emotionally unstable and received a warning from her high school in November 2018 about unexplained absences. On 25 November 2018, the police were called to the home where Kia was self-harming and physically attacking her mother and young brother. On 5 December 2018, roundsquared lodged a review of a reviewable decision request. On the 15 January 2019 a planner emailed Kia’s mother outlining the reasons for the reduced funding stating that ‘the Agency had excessively funded some participants’ plans as part of the transition to the NDIS scheme’. It was further claimed that ‘the incorrect disability tool was conducted in the last plan which provided some false information and impacted on the funded supports.’ The planner also stated Kia should be accessing mainstream services such as after school and vacation care and that core supports had been adjusted accordingly. The NDIA, however, provided no further information as to the request for a Review of a Reviewable Decision. On 14 February 2019 roundsquared again lodged the Review of Reviewable Decision request with the NDIA. When the 14 days elapsed and the NDIS had still not responded to the second request, Mark Pattinson (Director roundsquared) lodged a Reportable Incident Notification as the lack of funding provided in the participant’s plan had proved insufficient to ensure the participant remained safe within the home and the community.(Reportable Notification application 28/02/2019). The situation continued to escalate with Kia removing herself from her mother’s care on 3 May 2019 to couch surf at friends’ places. She was considered at high risk of being on the streets. On 21 May 2019 a Change of Circumstances request was submitted on behalf of Kia by roundsquared. An OT report was provided outlining the challenging behaviours and the risks associated with her reduced funds. It was also pointed out that most of her funds had been used trying to avoid such a situation developing. On 6 June 2019 Kia‘s mother was advised that the earlier decision not to review Kia’s plan had been set aside and a Plan review meeting was scheduled ‘as the NDIA is not satisfied that your current plan meets your needs, and so agree that it should be reviewed’. On 17 July 2019 Kia’s new plan was approved providing $18,219.62 in core supports ‘to assist with daily activities and community participation’ and $19,018.04 for capacity building. This Plan will provide her with the core supports she needs to ensure she can access the community in safety and with support as well as reduce the financial and emotional pressures on the family and family relationships.

However this decision to increase Kia’s core funding was made 7 months after the request for a review of a reviewable decision was initially made by roundsquared, and after a number of events had occurred that had put the participant at significant risk. The lack of core funding provided for Kia certainly fell short of providing a person-centred approach and, it would appear from the email from the Planner on 15 January 2019 to be informed by a need to correct administrative errors on the part of the NDIA within Kia’s previous plan. Planners need to consider the uniqueness of each participant’s situation including their functional capacity, their family situation and how the dynamics of these inter-relate to determine the capacity and nature of informal supports to be provided by parents. The potential risks to Kia’s safety associated with a reduction in her core supports by 75% between one plan and another appears to have been ignored by the planner with the onus of responsibility for picking up the shortfall being placed on the mother with comments made in the planner’s email of 17 January 2018 suggesting an abrogation of parental responsibility with the words ‘parents are expected to provide substantial support for a child of Kia’s age, including accessing social and community activities and transport.’ The

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planner’s response also indicates a lack of understanding about adolescent mental health and specifically PTSD.

To address this situation the following need to be considered:

• The incidence and severity of plan gaps would be reduced significantly if planners and LACs followed a genuinely person-centred approach to the planning process and were also provided with adequate time to ensure all the relevant information in relation to a participant was included in determining the funding for their plan.

• Improved training was provided to LACs and planners as outlined above under (c).

• Greater transparency in relation to the NDIA decision making processes and consistency of information from planners and LACs.

g) the reassessment process, including the incidence and impact of funding changes; roundsquared is finding that more participants particularly children are receiving reduced funding with many having their core funding cut or entirely removed. roundsquared has sought both light touch and unscheduled reviews for such cases. The rationale for such reductions is not related to any change in the capacity of the child or the family. In fact it could be argued that the child’s needs have increased. Planners, when queried, about these core funding reductions have responded by indicating that the cuts are based on ‘reasonable and necessary’ criteria or that it is now policy for core funding not to be available to children under 15 years except in exceptional circumstances. As indicated in Case Studies 4 and 5 above, comments have included that the support previously had been based on the use of the wrong disability instrument (WHODAS used instead of PEDICAT) resulting in a higher core funding allocation than would normally be expected of a parent of a similar age. Two complaints have been lodged by roundsquared on behalf of these decisions as they would appear to be direct contradiction of the advice provided by Emma Young Senior Complaints Officer to Mark Pattinson, roundsquared Director, on 27 November 2018 that states: ‘I can confirm the NDIA does not have a policy in place that excludes children under 15 years from receiving ‘Core Support’ funding, rather a planner will make the decision based on all evidence provided at the planning meeting.’ (copy of email attached).

The lack of transparency combined with a lack of consistency of information from planners and LACs to participants highlights the need for participants to receive support coordination to help them negotiate the minefield of a broken system. Great transparency and consistency will require a fundamental change in the culture of the NDIS and its Partners in the Community if the scheme is to ‘facilitate the development of a nationally consistent approach to the access to, and the planning and funding of, supports for people with disability’ as outlined in Section 3(1)(f) of the Act. People with disability need to be supported, where necessary, to ensure that the administrative problems with the scheme do not undermine the achievement of a participant’s goals due to poor planning practices, unrealistic expectations of informal supports or a lack of knowledge about the nature and trajectory of a disability on a person’s functional capacity.

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Lack of consistency within the NDIS is exacerbated by a lack of consistency of social policy across government departments. This is clearly evident for parents of children with disability who report in increasing numbers that they feel as though they are between a rock and a hard place when it comes to their employment and accessing support for their child. Often parents, and particularly mothers, are told that all parents face the dilemma of finding after-school care for their children, and that they are therefore not eligible for core support for a support worker after school. What is not considered here is that the child does not fit in well with the after school program and is often quite distressed afterwards resulting in additional stress for the family including other children. The assumption underlying this decision is not person-centred but rather based on a bureaucratic requirement that the NDIS should not fund support that should be provided by other mainstream services such as education. Planners need to take on board that it is often not quite so simple for families to compartmentalise their lives so that they can neatly fit the criteria of different government departments. If the government is serious in wanting mothers to return to the workforce, then it has to be flexible in terms of support provided to those parents to maintain their employment and pay their taxes.

To address this situation the following need to be considered:

• if there is no policy in place that excludes children under 15 years from receiving core support funding, then the CEO of the NDIA needs to ensure that this issue is clarified through an update on the NDIA website and through other communication channels with organisations providing support coordination to participants.

• The provision of support coordination to participants to assist them negotiate the scheme until the scheme shows that it is ‘back on track’.

• Develop consistent social policy across government departments to ensure that parents are not caught in the crossfire of inconsistent public policy administration.

h) the review process and means to streamline it The whole planning process for first plans and reviews needs to be reconsidered. Currently LACs are expected to complete the planning process in 90 minutes and write up the plan in 90 minutes. These time frames are very unrealistic for many situations including for participants with complex situations including mental health issues.

LACs report that 90 minutes may be OK for a relatively straight forward plan but where the family situation is complex and the participant’s disability is unstable this can result in significantly longer meetings. What needs to be remembered is that LACs and planners hear some very disturbing information during the planning conversation including matters related to domestic violence, child abuse, homicide and tragic accidents. Often the participant or a family member will breakdown and time out is required. Many LACs and Planners are ill-equipped for these disclosures and can reflect on these issues for some time after the meeting. Team leaders would appear similarly unskilled in supporting LACs. For many LACs the need to achieve their KPIs dominates the work situation. This does not provide an environment where person-centred planning can take place. Similarly when writing up the plan reference needs to be made to reports and often calls to therapist and support coordinators required to clarify information. Ninety-minutes is simply not enough time to do this. Roundsquared Submission JSC on NDIS 05092019 17

Many LACs have reported that they often need to complete plans at home often working an additional 3 or 4 hours a night. Recently an LAC in southern NSW was involved in a car accident that was directly attributable to the long hours of additional work being done to complete good plans. Workers compensation was paid to this worker but she has made the decision not to return to the position as work practices had not changed. The high turnover of LACs is evidence of the poor work practices and doing extra hours when the pay rate is only $34 an hour is just not worth it.

The plan review process can be an onerous one particularly for families with a child with a disability. At the plan meeting it can take up to one hour for all the questions to be asked about the child including questions related to their family situation and school, their interests and hobbies and their informal, mainstream and community supports. Considerable time is also taken up doing the PEDICAT. Many of these could be completed prior to the meeting via an email link or via the phone when the booking for the plan meeting is undertaken. With only limited licences for the PEDICAT instrument, the LAC conducting the review may not even have access to PEDICAT requiring a phone call to undertake it later that day or in the days following the meeting.

Similar arguments can be made for plan reviews for adults with the booking LACs undertaking the WHODAS or other relevant instrument (e.g. for MS, cerebral palsy etc) with the participant over the phone. Questions in relation to their informal, mainstream and community supports could also be updated at this time allowing greater opportunity during the face-to-face meeting to ensure information about their goals etc to be recorded fully and correctly. As staff who have undergone the pathways training do the booking calls, there should be no issues about confidentiality or understanding the NDIS pathway. The participant would have the right to deny providing these details over the phone consistent with their rights to choice and control.

Currently participants are not informed if their request for s48 Review has been unsuccessful. Participants/their families/carers are expected to know that if there is no response in 14 days then their request has been refused. Such a responses not acceptable and certainly does not reflect a person centred response. What it does reflect is a bureaucratic mentality with little or no respect for the participant. When a participant requests a s48 Review, the NDIA should provide a response, even a generic response, that indicates the reason why. To have no response is a form of passive aggression on the part of the NDIA towards participants.

To address this situation the following need to be considered:

• Allocate more time for LACs to undertake planning meetings and to develop plans to insure that the goals and needs of the participant are comprehensively recorded

• Improved training and remuneration for LACs to attract more qualified staff;

• Reduce the time spent by LACs in planning meeting by getting the LACs doing the bookings for planning meetings to complete the PEDICAT, WHODAS or other disability instrument at the time of booking; and

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• Provide written notifications to the participant, their family or support coordinator about whether an application for a s48 Review has been accepted or not.

i) the incidence of appeals to the AAT and possible measures to reduce the number The incidence of appeals to the AAT is increasing due to poorly developed plans and the lack of transparency and consistency in relation to NDIA decision-making processes. Improving the selection process for, and training of, LACs and planners would reduce not only the appeals to the AAT but also requests for s48 Reviews. Participants and their families are reporting cuts in the amount of funding being received with the reasoning behind such reductions not being explained. Currently there are significant waiting periods not only for s48 reviews but also AAT Reviews – with waiting periods often extending beyond the timeframe of the plan. The NDIA is engaging expensive legal representatives to fight the appeals and the amounts paid to these lawyers would be far in excess of the funds sought for supports and services of participants. In many instances the NDIA lawyers offer a settlement just prior to the AAT hearing. The sceptical view of this action is that this avoids a precedence being set, that could impact on the funding decisions for other participants. One way of ensuring greater transparency would be to provided participants with draft plans to ensure all the information was recorded properly and all relevant reports and their recommendations had been considered.

Measures to consider:

• Improving the selection process and training for LACs and planners;

• Improving remuneration for LACs and planners to attract better qualified people;

• Providing participants with a copy of their draft plans to comment on to ensure all relevant information is included

• The need for greater consistency of policies and processes in the development and building of plans

• Reducing the lead times for s48 reviews and appeals to the AAT. j) the circumstances in which plans could be automatically rolled-over Plans could be automatically rolled over where the participant’s situation is stable and on going supports and therapies to maintain/improve functional capacity are all that are required. This would be particularly beneficial for adults whose living arrangements and informal supports are stable. Children and adolescents who are in transition phases of their lives are not so well placed for plans to be rolled over. Children with disabilities approaching adolescence or for those completing their secondary education often require additional supports and services to effect a successful transition.

Rolling over plans for participants in rural and regional areas would be welcomed by many individuals and families where travel for a planning meeting often involves considerable travel. In rolling over any plans, participants would need to be assured that they would receive the same level of funding (+CPI increase) across all aspects of their plans. The roll over of plans cannot be used as a way to reduce funding.

Issues for consideration Roundsquared Submission JSC on NDIS 05092019 19

• What would need to be clearly articulated is how such roll-overs would be effected?

• Would the NDIA contact the participant prior to the Plan running out to see if the participant was happy to roll-over their Plan; or would participants self-select for such roll-overs?

• What period of time would the roll-over be for?

• Would there be any form of interview via the phone or email to record the stability of the participant’s situation?

k) the circumstances in which longer plans could be introduced; For many participants longer plans would be welcomed as it would reduce the stress of having to attend a planning meeting that in rural areas can mean significant travel. Like the roll-over of plans above, the participant’s situation would need to be relatively stable in terms of their disability, accommodation, informal, mainstream and community supports. Longer plans would be more difficult to put in place for participants whose disability was degenerative or unstable.

Issues for consideration

• If longer plans are developed for participants in these situations, there would need to be very clear provisions for urgent plan reviews if their circumstances changes. A time frame for such reviews would need to be clearly specified. Such a time frame should be no more than 14 days from the application for a review due to change of circumstances.

l) the adequacy of the planning process for rural and regional participants; roundsquared consultants have reported several instances where the LAC has been unable to access the NDIS planning program due to poor internet connections. The roll-out of the NBN in rural and regional areas is behind schedule. When an LAC is unable to access the NDIS or when there are repeated drop out due to poor connections, this causes frustrations not only for the LAC but also for the participant and their family. Often the train of thought is lost or information already logged in is lost. The uploading of reports from OTs, speech therapists and physiotherapists has also been impacted with plans developed that have not given consideration to therapy reports because they have been lost in the ether. There has been a perennial problem with the Uniting Batemans Bay office where the internet connection has failed. Similar issues arise when LACs do home visits to participants and they are unable to ‘hotspot’ to undertake the planning process.

Access to services – medical, education, transport, internet, retail etc – in rural and regional areas has been a consistent and common theme of policy development in Australia. The planning process of the NDIS is problematic for many people but with for rural and regional participants the tyranny of distance, thin markets, conservative attitudes and lower socio economic status exacerbates these inadequacies. ‘Thin markets exist where there is a gap between the needs of participants and the services available in the market. This can occur in a particular location (where the services are needed), and/or for a particular service, and/or for certain cohorts of participants; and driven by difficulties in servicing a client’s need or

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their location, such as high cost.’ (NDIS Thin Markets Project – Discussion Paper April 2019).

At a recent Thin Markets workshop in Canberra, attendees pointed to the change in the structure of the allied health workforce in rural and regional areas as a result of the NDIS with an increase in the number of sole traders leading to fewer opportunities for graduates and undergraduates to be mentored in these areas. This increase in sole traders has effectively reduced collaboration between professionals as each seeks to carve out their market share. Such a situations may respect participant confidentiality but can limit opportunities to develop different models of service delivery more responsive to individual needs as well as mentoring of new graduates. If market forces are left to find their own equilibrium, participants in rural and remote locations will either have to wait longer periods of time for assessments, equipment, home and vehicle modifications and therapies; or travel considerable distances to access services; or simply go without because it is all too hard.

Running parallel to the Thin Markets Project is the Boosting the Local Care Workforce Program (BLCW) being delivered by Ernst & Young, with the First Peoples Disability Network (Australia), and the Community Services Industry Alliance. roundsquared has been working with the BLCW Coordinator for Canberra and Southern NSW to identify issues of particular concern in southern NSW. Issues raised have included the lack of particular allied health professionals and the reduced collaboration between AHPs as more have set up as sole traders in response to the NDIS. Other issues identified include the need for a career path for rural allied health professionals and for support workers.

roundsquared supports Services for Rural and Remote Allied Health (SARRAH) concept of a Allied Health Rural Generalist Pathway to enable the development of specialist roles within the various allied health professions in non-metropolitan areas. [See: https://sarrah.org.au/ahrgp]. To retain skilled support workers in regional areas and to support the role of AHPs, roundsquared supports the development of career paths for support workers through, inter alia, the active promotion of the Certificate IV Therapy Assistance Course and the development of incentives such as fee moratoriums for those undertaking the course.

Issues for consideration

• need to recognise issues with communication connections in rural and regional areas and allow additional time for planning and review process

• for funding to be provided to enhance the recruitment and retention of allied health professionals to rural and regional areas and to investigate different models of service delivery to support professional development

• support for the active promotion of Certificate IV Therapy Assistance Course and the development of incentives such as fee moratoriums for those undertaking the course.

m) any other related matters i. NDIS access for people over 65 years Roundsquared Submission JSC on NDIS 05092019 21

Disability can occur at any age as a result of an accident or an illness such as cancer, meningococcal infection or MS. Currently the NDIS is not available to people aged over 65 years unless they have met access prior to their 65th birthday. After 65 years the person is expected to access assistance through the aged care system. Although the intention may have been to provide a seamless and integrated transition between the NDIS and aged care, the reality is quite different. People who have been able to access the NDIS prior to their 65th birthday can choose at 65 years whether they want to remain with the NDIS or move to services through MyAgedCare. For those who develop a disability after the age of 65 years as a result of an accident or medical condition, they are only eligible for services and supports through MyAgedCare. Why should Joe who has a stroke 1 month prior to his 65th birthday be able to access supports through the NDIS, while Frank who has a stroke with the same level of disability as Joe one month after his 65th birthday only be eligible for services through MyAgedCare. This situation is particularly anomalous given that 65 years is no longer the age point at which the Age Pension is able to be accessed nor is it any longer considered the age of retirement

ii. Mental health and psycho-social disability The most urgent need for changes, however, is in the area of mental health. As mentioned above people with psycho-social disability are often determined not to have access due to their EOD form stating their disability is considered episodic rather than permanent. The nature of the functional capacity related to psycho-social disability can indeed be episodic but the underlying condition is still present and if provided appropriate support and services the person can live a good life where they participate in many aspects of community life. Planners and LACs need to have a good understanding of the concept of recovery and to be able to provide a planning environment in which the person is relatively at ease and able to discuss in a non judgemental way their unique situation. It is important to remember that the term recovery does not mean cure. It means to be able to live a life not defined by your mental illness - a life with new meaning based on hope, healing, empowerment and connection. Recovery emphasises the importance of social inclusion and access to services and supports.

Psycho-social disability was not initially included as a disability for the NDIS funding. Psycho-social disability however remains an uncomfortable fit with the NDIS. On 30 June 2019 Partners in Recovery [PIR], Day to Day Living (D2DL), and Personal Helpers and Mentors Program [PHaMs] came to an end, with Primary Healthcare Networks (PHNs) funded to assist people either transition to the NDIS or to programs including Continuity of Support (CoS) or National Psychosocial Support (NPS). These programs will provide ongoing support to those who have not yet tested their eligibility for supports under the NDIS, or are waiting to receive an access decision or plan for the NDIS. This transition phase is confusing and confronting for people who received services through PIR. For those eligible for the NDIS, it is critical that LACs and Planners are provided additional training to enhance their understanding of the how severe and persistent mental health conditions impact on an individual’s functional capacity. Alternatively there need to be specialist LACs and Planners with specific mental health and recovery training doing the plans for people with psycho-social disability to ensure that the supports provided are

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consistent with recovery oriented practice and best practice guidelines. roundsquared also recommends that additional time is provided for first plan and review meeting for people with mental health conditions as medication can often slow their thought processes and tight time constraints can increase anxiety.

The need is urgent in southern NSW where there are very few GPs that bulk-bill and where psychologists providing services through a GP Mental Health Care Plan are often charging a co-payment of between $20 and $60. These co-payments can deter people with mental health issues from seeking early intervention support leading to crisis situations and even hospitalisation. PIR provided a range of comprehensive medical and social supports to Individuals with persistent and severe mental health conditions. Administered through the Primary Healthcare Networks (PHNs), individuals were able to access GP and other mental health consultations at bulk-billing rates. Unless similar arrangements are available through the NDIS, co-payments to access GPs and psychologist could see individuals not accessing medical care practitioners leading to a deterioration in their mental health and possible crisis intervention and hospitalisation.

Considerable work still needs to be done with GPs to ensure that Evidence of Disability forms are completed appropriately to ensure that a potential participant is not declined access merely because the GP did not fill the form in correctly. This is particularly necessary in relation to psycho-social disability.

Issues for consideration:

• roundsquared believes that LACs and Planners need to receive specific training in how to provide recovery-oriented first plan or plan review meeting (see MHCC

Recovery Oriented Language Guide get details)

• additional time be provided for first plan and review meeting for people with mental health conditions as medication can often slow their thought processes and tight time constraints can increase anxiety

• One consideration could be to have a mental health peer worker role within the LAC/planner team to improve their understanding of recovery, social inclusion, stigma and how mental illness can impact on the participant’s physical health, economic and employment status and their social and community engagement. Such a peer could provide invaluable insights into activities and supports within the community and information on-line and in apps to support participants.

iii. Need more comprehensive approach to community capacity building in rural and regional areas.

Other training that needs to be prioritised is community development and community capacity building. A major impediment to participants accessing services to support them to achieve their goals and to expend their Plan funds, has been the lack of allied health professionals including speech pathologists, occupational therapists and behavioural therapists in the regional areas. roundsquared is working with SARRAH and BLCW project coordinator to see how allied health professionals can be recruited and retained in the area.

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Some retail and other facilities remain inaccessible for people with mobility issues with public transport in southern NSW similarly inaccessible. As part of the community capacity building role, LACs and Planners should be working with other Federal and State government departments as well as local governments to improve the accessibility of all built environments in the community. The lack of accessible and affordable housing for people with disability in rural and regional areas is a common theme not only in NSW but across Australia. As part of a community development role, planners and LACs also need to work with the Department of Housing in NSW to streamline and prioritise home modifications to maximise safety and accessibility.

Case Study 6

Two sisters in their 20s live in Southern NSW with their mother. Both young women have spinal muscular atrophy requiring them to using a motorised wheelchair to get around their home and the community. They live in a Department of Housing townhouse. Both young women want greater independence but are unable to enter and leave the home without their mother as the front door needs to be opened manually which is not possible from the wheelchair. In their plans requests have been put in for a new door with an automatic opener that could be attached to the wheel of their chairs. This would facilitate the opening of the door from the chair. Department of Housing has been very tardy in their response to this modification despite the safety issues that have been highlighted (eg should there be a fire and the mother is out, both girls would be unable to exit the property without assistance). As part of the community development role, Planners and LACs need to consider how to develop protocols to expedite home modifications for people in receipt of funding from the NDIS.

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ATTACHMENT A

RESPONSES TO EVERY AUSTRALIAN COUNTS request to provide feedback to the new Minister for the NDIS Stuart Robert on how to get the NDIS back on track

The responses from the roundsquared consultants outlined below emphasise the need to immediately restore the $1.6 billion underspend of the NDIS used to put the Budget in surplus; and a fundamental change in the culture of the NDIA and its Partners in the Community to ensure greater transparency of processes; consistency of information; a genuine person centred approach to the planning process; improved staffing to reduce waiting times for home modifications and AT and increased support for families/carers to sustain their informal support. Funding also needs to be allocated to attract and retain allied health professionals and support workers to regional locations and to fund the building more accessible housing.

Round Square Consultants were asked to identify their top 3 issues to be raised with the new Minister for the NDIS, Stuart Robert, to get the the Scheme back on track. The Top 3 Issues identified by the roundsquared Consultants are:

1. The urgent need for better access to allied health professional including psychologists, behavioural therapists, OTs and speech therapists across rural and regional areas so that participants have access to timely assessments and required therapy sessions in accordance with their Plans

2. The need for transparency in terms of the NDIS administrative processes and greater consistency of information provided to participants, their families/carers and support organisations about how funds can be spent etc.

3. The need to significantly reduce turnaround times for requests for unscheduled reviews due to changes in circumstances as well as for approvals for home /vehicle modifications and major assistive technology items such as powered wheelchairs.

Other issues raised by roundsquared consultants include:

• Removing the requirement for proof of ongoing therapy needs and disability at each review as this is both degrading and stressful, as well as an extra expense.

• The need for greater support to be built into plans for parents/ageing parents to maintain their informal support role;

• Greater access to support coordination beyond the first plan particularly in rural/regional areas given the shortages/high turnover of therapists and closure or rationalisation of some services such as Cerebral Palsy leagueOne Door, Australian Unity;

• An improved access process for participants with psychosocial disabilities to ensure that their recovery journey is not undermined by a determination that they have not met access resulting in a lack of access to necessary supports. This is particularly urgent given the high rates of suicide and youth mental health issues in the area and the termination of the Partners in Recovery Program from 30 June 2019.

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Background Notes

The National Disability Insurance Scheme has been running in trial sites in different locations across the country since 2013 with the full roll-out of the Scheme starting on 1 July

2016. In most parts of NSW, the NDIS is in its third year of operations. Growing criticism has been levelled at the Scheme about its lack of consistency and transparency; the significant lag times for home modifications and major AT items and the ill-fit of psycho-social disability in the scheme. More recently the Morrison Government was severely criticised by disability advocacy organisations and others for using the $1.6B NDIS underspend to prop up its return to surplus. No recognition of the difficulties in relation to accessing allied health services/supports or the lag times with home mods and AT was acknowledged, as such an acknowledgement would have been an admission that the NDIS had come indeed ‘come off the rails’.

With the re-election of the Morrison Government in May 2019, a new Ministerial position was announced – Minister for NDIS – with Stuart Robert to take on the role. It is within this context that the Every Australian Counts campaign has asked community organisations and individuals with an interface with NDIS to tell the new Minister ‘what his first priority should be’ to get the scheme ‘back on track’.

The National Disability Insurance Scheme (NDIS) Act 2013 (2016) outlines in its introduction the ‘objects’ and ‘principles’ of the Scheme that include inter alia:

• Supporting the independence and social and economic participation of PWDs

• Providing reasonable and necessary supports, including early intervention supports

• Enabling people with disability to exercise choice and control in the pursuit of their goals and in planning and delivery of their supports

• Facilitating development of a nationally consistent approach to access, planning and funding of supports for PWDs

• promoting provision of high quality and innovative supports to enable PWDs to maximise independent lifestyles and full inclusion in the community; and

• Raising community awareness of the issues impacting on social and economic participation of PWDs thereby enhancing greater community inclusion

• Considering/respecting the role of family, carers and other persons in the PWDs life and strengthening their capacity to support PWDs

• Supporting communities to respond to PWDs needs and achievement of their goals

• Providing where appropriate, support to coordinate the delivery of disability services where there is more than one disability service provider involved.

The responses received from the roundsquared Consultants suggest that these objects and principles no longer underpin the Scheme, but rather that political, economic and bureaucratic expediencies have taken precedence. If the NDIS is to ‘get back on track’ and

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provide a proactive and inclusive approach to the many and varied needs of PWDs and their families, then the $1.6 B needs to be immediately reallocated to the Scheme:

• To improve the training and responsiveness of NDIS staff to the needs of participants including making the processes more transparent and user friendly;

• To enhance the recruitment and retention of allied health professionals to rural and regional areas reducing the delays in assessments, recommendations and therapy sessions;

• To ensure more timely responses to requests for unscheduled reviews, home modifications and assistive technology;

• To develop well-targeted community education initiatives to enhance community accessibility and inclusion;

• To provide better support to families and carers experiencing distress/burnout from their 24/7 support.

From the responses of the roundsquared Consultants the following table has been developed to indicate some of the challenges being experienced and how these relate either directly or tangentially to these objects and principle.

Object or principle      Issue                          Evidence

Support independence and   •   Limited employment options for     •    Difficult when a lack of

social and economic          PWDs in rural/regional areas             therapists and delays with

participation of PWDs assistive technology and home modifications (ATHM)

Providing reasonable and    •   Lack of support workers in          •    Ability linkers have played a

necessary supports,              regional areas with high turnover       major role in linking people

including early                   of staff.                        who have not met access with

intervention supports       •   Lack of mental health support          mainstream and community

workers and MH peer support services. Ability linkers role is to workers in regional areas. Need be terminated by late 2019. for Cert IV in MH peer work to be available in area.

Enabling people with        •   Asking for ‘proof’ of disability on    •   Asking for proof makes PWD

disability to exercise choice      an annual basis is degrading and          feel guilty about seeking

and control in the pursuit          stressful                              support to live a normal life

of their goals and in         •   Limited by lack of service options    •   NDIS model seems to be

planning and delivery of        and transport in rural regional          informed by an urban model of

their supports                   areas                                     service where access and

choice are available

Facilitate development of a  •   Lack of consistency of information   •   Different NDIA planners giving

nationally consistent           from LACs and NDIA planners             different information in

approach to access,         •   Lack of transparency/consistency         relation to MH Care Plans and

planning and funding of      •   NDIS lacks transparency with each       access to additional psych

supports for PWDs               partner in community doing it            consultations through NDIS

their own way                     •   Participants with psych-social

•   LACs not advising that new reports        disability must access 10 psych

required at Plan Review consults through Medicare

•   Lack of timely responses to             before they can access psych

requests for unscheduled review consults through NDIS. by NDIA due to changes in Medicare ($120) however circumstances provides a different rate of Roundsquared Submission JSC on NDIS 05092019 27

• Improved training for plan rebate to the NDIS ($190). As a

managers to assist participants on result , psychs are charging a how to maximise the services they co-payment of between $20m obtain from their funding and $60 for NDIS participants.

•   Plan reviews are occurring up to 3      Many cannot afford this and do

months before end date, while not attend. In urban areas implementations are occurring where there are GP super either on or after the end date clinics and headspace, such consultations are bulk billed but very few are in rural and regional areas.

• Intake LACs not advising that reports required for Plan review

  Promote provision of high • Slow turnaround for Home • Lack of registered providers to

  quality and innovative Modifications and assistive do home modifications in

  supports to enable PWDs technology due to delays in quote rural/regional areas

  to maximise independent approvals by NDIA • Safety issues where home

lifestyles and full inclusion modifications are delayed eg in the community bathroom modifications to accommodate wheelchair

• Home modifications delays for people in government/ community housing or private rentals

  Raising community • Training of NDIA employees on • Community capacity building

  awareness of the issues importance of building/connecting has not been a key focus of the

  impacting on social and with community NDIS Partners in the

  economic participation of • Need to work with GPs to ensure Community

  PWDs thereby enhancing EOD forms and ARF forms are • Termination of Ability Linkers

  greater community completed properly program

  inclusion • GPs often fill out EODs from a

medical mode perspective rather than a functional capacity perspective

Respect the role of family,   •  More consideration needs to be     •   There is often no core funding

carers and significant             given to ageing parents and               for participants under 15 years

others in the PWD’s life           capacity to provide on-going care        of age with the expectation

and strengthening their     •   Lack of timely responses from            that parents should be

capacity to support PWDs       NDIA to change of circumstances        providing the support. This is

placing participants at risk placing significant financial and emotional strains on parents/families who are often unable to work and dependent on government benefits.

Support communities to     •   Lack of allied health professionals   •   Lack of AHPs particularly OTs,

respond to the                  (AHPs) in rural/regional areas           speech and behavioural

individualised goals and      •   Registered providers are not             therapists in rural/ regional

needs of participants            renewing registration due to high        areas results in longer waiting

annual costs when turnover in times for people to access rural and regional areas cannot supports needed to meet goals

justify the time and expense –       •   Lack of registered providers

[thin market] impacts on choice and control

•   Concerns that if funds are not             for those who are agency

spent due to lack of services that managed

the funding in next plan will be      •   Lack of NDIS registered

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reduced accordingly as ‘it was not suppliers of AT in area e.g. sit needed’ to stand chairs, electric adjustable beds

Provide support to          •   Participants are unaware of how    •   Greater transparency needs to

coordinate the delivery of        to implement their plans often         be provided to participants

disability services where         ending up with significant              about what has been funded

there is more than one         amounts of their funding not           under specific CB categories as

disability service provider        spent *(1)                              Plans provided to participants

involved                   •   Lack of transparency about how        do not provide these. Even

funds are allocated and can be LACs find it difficult to spent in Plan understand the categorisation

•    Inability of SC to speak to NDIA on        of supports without referring to

behalf of participant the Planners notes.* (2)

1. LACs can record information provided by participants and/or their family etc. incorrectly during pre-planning. This can result in plans that neither reflect the goals and aspirations of the PWDs nor the level of support needed to achieve their goals. To remedy this situation and to make the process more transparent, participants and support coordinators alike have recommended that LACs provide participants with an option to review their plan prior to being sent to planners to determine funding. In particular participants need to be able to review

• Their Participant Statement including ‘About me’ and ‘my daily life’;

• Their Goals and the steps to achieve those goals and supports needed to achieve them

• Their supports – informal, mainstream and community. As many plan reviews are occurring 2 to 3 months before the expiry date, this should allow sufficient time for the participant to review what has been written and make changes as necessary.

2. Support coordination is seldom provided to participants after their First Plan unless there are extenuating circumstances or they have been streamed as intensive/super intensive. This raises 2 further issues in relation to transparency.

a) Participants are not informed about their streaming category and how this streaming determination impacts on their level of support including support coordination;

b) Participants are not provided with a readily understandable version of their Plan requiring a Plan Implementation with an LAC who can refer to the planner’s notes to find out where and how different allocations of funds are to be spent particularly within the Capacity Building budget. To improve transparency, the following are recommended:

i) participants be informed of what streaming category they are in – General, Supported, Intensive and Super-Intensive; and ii) participants be provided with a copy of their plan that provides the same information from the planner to the LAC on how the fund are to be spent and from which category eg Core or CB (social and community participation, work, relationships, health, lifelong learning).

Contact details: Helen Fisher, Director roundsquared – helen.fisher@roundsquared.net.au

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