Joint Standing Committee on the NDIS

13 September 2019

Joint Standing Committee on the NDIS PO Box 6100 Parliament House, Canberra ACT 2600 ndis.sen@aph.gov.au

Carers NSW wishes to thank the Joint Standing Committee for the opportunity to provide a submission to its inquiry into NDIS Planning. This submission is informed by the experiences of carers of people living with a disability receiving support through the National Disability Insurance Scheme (NDIS) in New South Wales (NSW), as relayed to Carers NSW staff.

A carer is any individual who provides care and support to a family member or friend who has a disability, mental illness, drug and/or alcohol dependency, chronic condition, terminal illness or who is frail. Carers NSW is the peak non-government organisation for carers in New South WaleS (NSW). Our vision is an Australia that values and supports all carers, and our goals are to: - Be a leading carer organisation in which carers have confidence - Actively promote carer recognition and support - Actively support carers to navigate a changing service landscape that will be characterised by ongoing policy reform - Promote connected community experiences and opportunities for carers that are inclusive of diverse carer groups - Lead and advocate for carer-specific and carer-inclusive policy making, research and service delivery - Continue to be a quality-driven, responsive and carer-focused organisation.

This submission will focus on the challenges experienced by participants and carers in the NDIS planning cycle. In particular: the ongoing development of inadequate plans, the complex plan review process and the subsequent high administrative load placed on carers, impacting on carer health and wellbeing, and social and economic participation.

Thank you for accepting our submission. For further information, please contact

Yours sincerely,

Elena Katrakis CEO Carers NSW

Carers NSW submission:

Joint Standing Committee on the

NDIS inquiry into NDIS Planning

13 September 2019

AN AUSTRALIA THAT VALUES AND SUPPORTS ALL CARERS

Introduction

The National Disability Insurance Scheme (NDIS) holds great potential to improve the lives of people with disability, their families and carers living in New South Wales (NSW). However, since its launch in NSW in July 2013, the implementation of the NDIS has resulted in a number of key concerns for Carers NSW.

We have raised these concerns continually through papers, submissions and contact with Ministers and Shadow Ministers, at both State and Commonwealth levels and have seen some improvement over time. However, there are a number of key issues that remain present for many carers, especially throughout the planning cycle.

Drawing on two state wide surveys of carers in 2018, consultation with carers and service providers via focus groups and working groups, multiple carer case studies and our experience working with carers of people with disability through government funded programs, this submission highlights the key areas of the Terms of Reference for this inquiry that are ongoing priorities in Carers NSW advocacy: (a), (b), (c), (e), (f) and (h).

These are explored in relation to four broad topic areas: The ability of planners to understand and address significant disability, inclusion in the planning process, plan gaps, and the review process.

“Initially my son’s plan was a nightmare due to a very poor experience with [an NDIA representative]. It took me 6 months of reviews, escalations etc. to get it right. For the past 12 months the plan itself has been working well for my son. It expired a week ago. Three months ago I began calling to get the plan reviewed. I called frequently and when it was close to the expiration date I called every day again had the matter escalated and eventually had to go to my local member to have them get someone from the NDIA to call me so we could get a new plan… We think the NDIS has been a positive thing for my son but the stress on me as his carer to make sure the administrative side is sorted and his supports are in place and appropriate is both punitive and onerous.”

• Carer NSW 2018 Carer Survey respondent

“My son has very high complex needs and having to provide evidence of all his needs has been arduous & exhausting… we have had to have numerous assessments and reports (time consuming and costly) which just end up saying what I told them in the first place. The [NDIA representatives] don’t understand complex needs… We insisted on a review which took 10 months and was still inadequate as my son’s needs are increasing and now we are in the AAT process which is unbelievably stressful and legalistic. I’m more stressed than ever before and feel totally devalued by the NDIA, feel pressured to leave my job and pressured to put my son in [a group home] even though his current living arrangement works very well for him and he’s happy… I’m terrified that if the planning process is as horrid as it has been over the year it has taken so far, then I am going to be tipped over the edge.”

• Carer NSW 2018 Carer Survey respondent

Introduction

Historically in NSW, people with disability received block funded services or standardised funding packages that were uniform for all recipients. This funding was not flexible or responsive and often did not meet a person’s individual needs or enable them to pursue their goals. With the aim of enabling people with disability to achieve greater independence and social and economic participation, the NDIS is intended to respond to each person with disability’s unique circumstances and support needs.

The NDIS planning cycle involves pre-planning; considering participant goals and the necessary supports needed to achieve these goals (informal supports, mainstream supports and formal supports); participation in a guided conversation with an NDIS planner or Local Area Coordinator (LAC) to gather information, develop goals and discuss supports; and the subsequent allocation of an individual package of supports or NDIS plan by an NDIS planner. This plan is then provided to the participant and/or their carer for implementation. The NDIS plan outlines a package of approved supports that will be funded within a prescribed period and on approaching the end date of the plan, the plan cycle will begin again with an evaluation of how the plan has been working incorporated in pre-planning for the participant’s next plan.

Despite these measures, carers have consistently reported ongoing issues throughout the planning cycle, facing significant challenges at every stage. Carers have identified difficulties with the pre-planning stage relating to insufficient information. Many have reported unsatisfactory planning meetings due to limited understanding of disability of some NDIA representatives. Carers have also identified limited consideration of carer input, needs and goals in the planning process, resulting in inadequate or insufficient plans. Unexplained significant reductions in funding following plan reviews and excessive delays in accessing both scheduled and unscheduled plan reviews have also been raised frequently. Carers report that their NDIS planning experiences have caused significant distress and resulted in increases in the direct care and support coordination they provide to the person they care for.

It is not surprising, therefore, that the NDIS Family and Carer Outcomes 30 June 2018^1 report indicated that the self-reported health of family and carers of NDIS participants under 25 years of age declined after one year under the NDIS. The 2018 Carer Survey found that 61% of respondents caring for an NDIS participant (n=713) were spending more time organising supports for the person they care for since the roll out of the NDIS in 2016.^2 Carers of NDIS participants further reported that although they acknowledged and appreciated the increased opportunities and supports that the NDIS provided for participants, the arduous administrative load associated with implementing the NDIS had been detrimental to their health, wellbeing and social and economic participation.

Carers NSW recognises the ongoing work done by the NDIA to improve NDIS planning, including the increase in specialist staff, introduction of participant pathways and ongoing simplification of processes. However, we also wish to highlight that further review and improvement of the planning cycle will be required if informal caring roles are to be strengthened and sustained.

b. The ability of planners to understand and address complex needs

Carers NSW believes that a. the experience, expertise and qualifications of planners and c. the ongoing training and professional development of planners underpins their ability to understand and address complex needs, therefore these items will be discussed together. It is important to note that it is not only NDIS planners involved in the planning process, but also LACs. In many cases, LACs conduct planning meetings with participants, their carers and families, feeding information onto planners to facilitate the development of participant plans. While in NSW LACs are not directly employed by the NDIA, they are still representatives of the Agency. As LACs are involved in the planning process, it is important to consider them within the scope of this inquiry.

Complex Needs

Carers NSW recognises and acknowledges the NDIA’s development of participant pathways, including the Complex Support Needs Participant Pathway, which aims to support participants with additional needs associated with, for example, mental illness, incarceration or homelessness, and as such require a higher level of support to access the NDIS and participate in the community. Although this specialised stream aims to support the expected small proportion of participants who have particularly complex needs, many participants will have multiple needs due to the nature or severity of their disability and individual circumstances.

The most recent NDIS quarterly report indicated that almost two thirds of participants were receiving supports due to autism (30%), intellectual disability (29%) or psychosocial disability (9%).

The Survey of Disability, Ageing and Carers (SDAC) has previously found that over half of Australians with intellectual disability and living with a severe core-activity limitation needed assistance with 4 or more activities. More than half of those living with autism had a profound or severe communication restriction and almost half also had a profound or severe mobility restriction. Nearly 90% of those living with psychosocial disability reported having one or more other impairments or restrictions, with two-thirds of those reporting a co-morbid physical disability. Furthermore, almost two in five people with psychosocial disability also reported difficulties in learning or understanding and around one third reported having a sensory disability.

It should therefore be assumed that many people receiving supports through the NDIS will have significant and complicated needs across multiple life domains (e.g. accommodation, mobility, communication, health, social participation, education and employment), requiring a range of mainstream, formal and informal supports throughout their lifespan. As such, it is important that NDIA representatives have the ability to understand and address the impacts of multiple, related support needs.

Understanding and addressing support needs

As noted, the NDIS supports those with significant disability, often impacting on many areas of their everyday life and the lives of their family members and carers. Whilst the NDIA has despite the OT report stating new wheelchair was required and shower chair was on loan and not entirely suitable. We submitted an admin review thinking it was in error. Review was lost and not actioned.” It is not clear in NDIS guidelines if representatives of the NDIA engaged in planning activities are required to have any specialist training or experience in disability to conduct planning meetings, interpret and apply medical or health professional assessments and recommendations, or develop evidence-based plans that support optimal outcomes for participants, their family members and carers. Carers have consistently raised concerns that NDIA representatives do not have a thorough understanding of disability, resulting in the development of inadequate plans that do not meet the needs of participants and carers and do not enable optimal functioning and participation.

Some carers have reported to Carers NSW that during planning meetings, NDIA representatives have asked inappropriate or patronising questions, causing participants and their carers distress and raising concerns about the limited awareness and understanding of NDIA representatives. Other carers have reported that costly assessments and subsequent recommendations from medical or allied health professionals have not been considered or included in the participant’s NDIS plan. In many cases, carers have reported that no feedback was provided in regards to why recommendations were not implemented.

Additionally, the NDIS requires participants and carers to actively request the supports and services that they need during the planning meeting. However, participants and carers are not always aware of the supports needed by the participant to maximise their abilities or enable them to meet their goals. Carers may also not be aware of, or be able to articulate, the supports that they need to sustain their caring relationships and improve their own wellbeing or participation.

The recent NDIS Family and Carer Outcomes 30 June 20187 report indicated that following one year under the NDIS, there was an increase in the number of family members or carers of participants aged 0-14 years who knew what they could do to support their child’s learning and development, and knew what specialist services were needed. However, approximately half reported that they do not know what they could do to support their child’s learning and development and over half reported that they did not know what specialist services were needed to support development.8 Similarly, more than half of families and carers for participants aged 15-24 were not able to identify the needs of the participant and how to access available supports and services to meet those needs, with lower rates for family and carers of participants with autism and intellectual disability.9

Many carers may therefore need the assistance of appropriately skilled NDIA representatives who are able to, through pre-planning and planning conversations, actively identify support needs or innovative

Ways to enable increased participation

If NDIA representatives do not have a thorough understanding of disability and the available interventions or supports to facilitate participants to meet their goals, they may not be able to effectively assist participants, families and carers to develop a thorough and holistic support plan that optimises the capability of the participant while ensuring the sustainability of informal supports.

Whilst many insurance schemes do not directly employ qualified professionals to make funding decisions, these decisions are guided by the opinion or advice of qualified medical and health professionals. Where concerns arise that a conflict of interest exists in regards to assessments and recommendations from medical or health professionals, further guidance should be sought by NDIA representatives from appropriately qualified professionals who are able to interpret and review them. Where recommendations are not implemented in a participant’s NDIS plan, further communication should be made with the participant or their nominee to provide feedback, enabling greater transparency and consistency and reducing distress for participants and carers.

The Independent Assessment Pilot (IAP) utilised appropriately qualified health professionals to conduct standardised assessments of potential participants and current participants with autism, intellectual disability or psychosocial disability to assess the level and scope of functional impairment and guide access and planning decisions. These assessments were provided in areas of NSW and were funded by the NDIA to better understand the functional impact of these conditions and ensure participants are able to access the appropriate supports, increasing consistency, accuracy and reliability of decision-making by NDIA.

While the effectiveness of this pilot is not yet clear, Carers NSW supports the provision of qualified health professional assessments to ensure equity of access to services and determine adequate supports, in alignment with other sectors including employment and aged care. Additionally, Carers NSW recommends the continuous training of staff in disability to ensure minimal distress to participants and carers during planning conversations, and an increased professional workforce to ensure that plans are thorough, and meet the diverse and intricate needs of participants, their families and carers.

Recommendations for increasing the ability of NDIA representatives to understand

and address significant disability:

• Minimal qualifications or equivalent experience of NDIA representatives involved in the NDIS planning process in disability, human services, social services or relevant area
• Increased professional workforce within the NDIA to guide planners and enable adequate consultation
• Independent Assessment Pilot rolled out nationally to increase consistency, accuracy and reliability of NDIA decision-making
• Ongoing professional development for NDIA representatives involved in NDIS planning in disability, including understanding and implementing medical and health professional reports.
• The implementation of additional report writing templates for medical and health professionals to ensure appropriate information is included in reports, minimising administrative time and costs for participants and carers.

g. Participant and carer involvement in the planning processes and the efficacy of introducing draft plans

Carers NSW has received mixed messages from NDIA representatives, service providers and carers about whether or not participants, carers and supporters/advocates are encouraged to participate in planning meetings. The Carer “At the last meeting with the [NDIA representative] I was told no less than 5 times that nothing I say or write will be taken into consideration as I am his mother and therefore cannot be impartial. I am appalled by the way carers are treated by [NDIA representatives] - I am his nominated representative and his advocate but am completely disregarded.”

-Carer NSW 2018 CarerWithout involving the right stakeholders in the planning process, Survey respondentit will be impossible for the LAC or planner to get a clear picture of the participant’s current support arrangements and overall support needs. As per the Carer Recognition Act 201012, carers and participants should be considered experts in their situation and needs, and failure to include them in the planning process is likely to lead to increased plan reviews as plans will not be developed to meed participant and carer needs.

The NDIS Planning Process

The Productivity Commission (2011) further recommended that where participants have high informal care needs, an additional independent assessment of carer needs should be conducted. However, is not clear if carers of NDIS participants will be eligible for, or able to access supports through the ICSS that enable them to take a break from caring or access replacement care that supports them to increase their social or economic participation.

Carers NSW recommends that the NDIS make reasonable efforts to identify carers, especially family members who may be ‘hidden’ carers such as children or those who do not identify themselves as carers, and involve them in the planning process to ensure thorough understanding of the participant’s current situation. Additionally, greater consideration should be given to carers’ needs in the planning meeting to ensure that supports that sustain informal caring arrangements are adequately funded in the participant’s NDIS plan. “… no one wants to listen to me as a CARER they Third party planning say its all about the participant well that’s fineThe use of a third party (LAC) for the planning meeting creates but our son is glued to mya barrier to inclusion for participants and carers, as the hip. [He] can’t do anythinginformation gathered in the meeting is passed through an LAC to the NDIS planner. Carers have raised concerns that the misinterpretation or miscommunication of information between LACs and NDIS planners has resulted in plans that are not reflective of the participant and carer needs and wants.

• Carer NSW 2018 CarerFurthermore, many carers have reported that the information or Survey respondentassurances provided by LACs that supports would be included in the plan have not been reflected in the plans they have received from the NDIA, resulting in significant distress on receiving plans that do not fund many of the agreed supports. The lack of direct contact with NDIS planners in many cases limits communication between the planner and the participant and their carer, creating confusion and frustration for participants and carers as they do not understand why some decisions have been made or been able to discuss alternatives or providing further evidence.

The new NDIS Participant Pathways reform discusses the “When the LAC was in my development of plans in consultation with participants, their house discussing the plan, families and carers. The introduction of ‘joint planning meetings’ some promises of aims to enable discussion, negotiation and explanation certain inclusion were made throughout the development of the plan. Providing plan drafts or to which later turned out to determining supports with participants enables greater clarity be false. and transparency, it also reduces the passing of information through third parties, and long delays due to having multiple touch points in the planning process. Carers NSW supports and Survey respondent encourages the roll out of new planning processes that match participants with the appropriate planners, and conducts the development of plans in consultation with participants and carers.

Recommendations for increasing inclusion in planning:

• Inclusion of participants and their carers in all NDIS planning meetings
• Increased training for NDIA representatives in the role and needs of carers and how to identify ‘hidden carers’.
• Timely national roll-out of joint planning meetings to reduce third party planning and enable increased inclusion of participants and their carers in the development of NDIS plans.
• The implementation of independent carer assessments where a participant has high informal care needs to ensure that adequate supports are funded in the participants NDIS plan to sustain informal caring relationships.

f. The incidence, severity and impact of plan gaps

Supports that sustain informal caring arrangements

The Productivity Commission (2011) into Disability and Supports identified that one of the issues facing the previous disability support systems was that it was “economically unsustainable”, positing that “appropriate funding would stabilise the withdrawal of informal care under the present crisis-based system (which is leading to the costly withdrawal of informal supports by non-coping carers)”.[15] Additionally, that previous systems left carers and families feeling devalued, and in order to address this, reforms would consider the support provided by families in assessments.

The NDIS policy framework recognises the importance of carers and to some extent takes into account the support that they provide. Carers may assist the person they care for to access the NDIS, play an active role in planning and implementing support, and benefit from the funded supports in the person’s plan. However, the support that carers are entitled to receive in their own right from the NDIS (including the Information, Linkages and Capacity building, or ILC, component) is very limited, and completely dependent on the initiative of the person they care for and the NDIA representative preparing and reviewing that person’s plan.

The final report of the NDIS evaluation conducted by the National Institute for Labour Studies at Flinders University found that access to supports directly assisting carers in their caring role was limited under the NDIS and inconsistently included in plans.[16] In fact, the proportion of carers not accessing carer supports was found to have increased over the course of the evaluation, while the proportion who had adequate daily or weekly breaks from providing support decreased.

The recently released NDIS Family and Carer Outcomes 30 June 2018[17] report indicated that while family and carers felt better supported to continue providing care to the participant, family and carer self-reported health decreased, and while employment improved for family and carers of people under 25, the most commonly reported barrier to working as much as respondents would like was the perceived situation of the person with a disability. Similarly, for carers and family of participants 0-14 years, it was most commonly reported that the perceived situation of their child with disability was the biggest barrier to increased social engagement.

Carer Support and Respite in the NDSI

Carers have reported to Carers NSW that while the NDIS has increased opportunities and supports for the participants, limited funding for supports that directly or indirectly benefit carers in NDIS plans has impacted significantly on their health, wellbeing and employment and in some cases, placed caring arrangements in jeopardy.

Planned breaks focusing on the carer’s needs

While respite for carers is not named as a service type in the NDIS price guide, participants can be funded for services that have the potential to provide carers with a break, such as support to undertake activities and participate in the community, in their NDIS plan. Supports that may be funded for an NDIS participant that may provide a respite effect also include short term accommodation, assistance in living arrangements (host family/alternative family solutions) or assistance with self-care overnight.

Respondents to the Carers NSW 2018 Carer Survey[1] were fairly evenly split regarding the effect of NDIS supports on their ability to take a break. However, around half of respondents disagreed that supports from the care recipient’s NDIS plan supported them to look after their own health, and just over half disagreed that NDIS supports enabled them to stay in, or go back to, paid work.

While carers are still able to indirectly access services that provide a respireffect, the absence of espite as a term has created a necessity for carers to adjust their vocabulary when developing an NDSI plan. The NDIs still affords carers with the opportunity to take a break but the benefit to the carer is secondary and the activity must be primarily be in the participants’ interest. This means that carers who are involved in the initial planning process are forced to be ‘creative’ in their approach to requesting respite in order to have their own needs met. The transition has been particularly challenging for less articulate carers or carers from CALD backgrounds who may have trouble developing person centred reasoning for their own need for respite. Arguably this has also led to a reluctance from planners to approve supports that provide carers with a respite effect and a tendency to outright refuse requests for respite[2].

Additionally, carers of NDIS participants aged 8 years or less have reported that they have not been able to access supports that provide a respite effect through their child’s NDIS plan as they have been advised that the high level of support they provide to the participant falls within ‘parental responsibility’. However, a 2012 systematic review of daily patterns of time use for parents of children with complex needs suggested that the time spent in primary childcare by parents of children with complex needs, outside of infancy, is higher than that of other parents, suggesting that the informal care provided by these parents extends beyond parental responsibility.[3]

The Productivity Commission’s 2017 National Disability Insurance Scheme (NDIS) Costs report recommended improved access to respite for unpaid carers stating “Informal care, and the ability to call upon informal carers, is a vital part of the supports provided by the NDSI. Without respite services, the sustainability and success of the scheme are imperilled.” [4] Furthermore, the Productivity Commission recommended that it be made clear to planners, participants, their families and carers, that respite can, and where appropriate, should be included in an individual’s support package and there should be increased transparency around the availability of short-term accommodation and additional in-home care as alternative care arrangements for respite purposes.

Coordination of Supports

Coordination of Supports (CoS) can be funded in NDIS plans, however this is only allocated to participants who are deemed “I am 78 years of age in receipt of an aged pension. My son’s NDIS Plan was approved in 2/2018 but a support cordinator was not funded. He has been unable to find any assistance so far in gaining supports provided in plan.”\n- Carer NSW 2018 Carer Survey respondent

by the NDIA as likely to have particular difficulty implementing their plan, and in need of intensive capacity building. While the decision making criteria for allocating CoS are not publicly available, it is Carers NSW’s understanding that CoS is considered ‘reasonable and necessary’ on the basis of particular criteria indicating ‘complexity’ that do not explicitly include the circumstances and the needs of the carer. As a result, Carers NSW is aware of many cases in which carers and their supporters – even LACs in some cases – have explicitly requested that CoS be funded on the basis of the carer’s lack of capacity to implement the plan and have been denied this support, or have received inadequate funding for it.

In most of these cases, there was a clear expectation that the

e “Suddenly I had to become carer – who is often ageing, experiencing their own health or ’e “car manager without mental health issues, may be from a culturally and linguistically ’ “diversely (CALD) background and/or lacking skills and confidence ’ “with dealing with service providers and using the internet – ’ “would take responsibility for coordinating the supports of their ’e “son or daughter with disability. ’ Some of these carers were previous clients of the ADHC funded Older Parent Carer Support Coordination program, which provided carer-focused case management and other support, but were still deemed as not requiring CoS. Most were completely overwhelmed by the prospect of having to coordinate the participant’s supports, received inadequate guidance to do so and as a result either did not successfully implement the plan, did so at the cost of their own health and wellbeing, or relied heavily upon the support of service providers who felt they had a duty of care but were no longer funded to offer this service.

• Carer NSW 2018 Carer Survey respondent
  Carers have reported that while the level of support received by the participant has generally remained the same under the NDIS, there has been a significant increase in the amount administrative work required of them. The increased provision of support coordination, especially in the initial years of the NDIS, whilst carers continue to build their capacity to effectively implement supports and the market continues to strengthen, will reduce strain on carers and improve long-term outcomes as plans are implemented effectively, enabling better early intervention.

Assumption of available/accessible mainstream supports

Transport

Inadequate funding for transport has been a particular issue for people with disability and their families and carers in NSW as they transition to the NDIS. Carers NSW has heard from many carers that the levels of transport funding being allocated represent only a fraction of the transport expenses they have in any given year. State funded taxi subsidies and eligibility for the Companion Card go some way to addressing these costs, but are themselves grossly inadequate compared to the drastic increase in costs that is reported, especially from people living in regional, rural and remote areas.

The main reason for this discrepancy is that transport was historically included in block funded programs, at little or no cost to the client and their family. The rollout of the NDIS has not only ceased block funding to disability support providers but also significantly impacted the operations of the community transport sector. As a result, many participants and families are being forced to either cut down on activities, meet the often excessive costs themselves or personally provide extensive transport, to the detriment of their own employment and/or wellbeing.

The McGarrigle NDIS test case (2017) ruled that NDIS participants living in rural areas who are unable to drive or access public transport should be funded for the full cost of their transport needs by the NDIA provided that it was “reasonable and necessary.“24 However, delays in updating NDIS transport guidelines to reflect this decision haves resulted in ongoing challenges for participants, their families

and their carers, with ongoing reports that adequate transport funding has not been provided in participants plans.

Where mainstream transport is available, carers have reported that it is often prescriptive or does not meet their needs. Carers have noted that in NSW, the NSW Government funded Assisted School Travel Program,25 which provides in-kind transport for NDIS participants from school to home, cannot provide transport from home to another more appropriate location (i.e. after school care), transporting children only to their home. This means that in cases where carers may be able to access mainstream or specialised childcare services outside of school hours to enable them to engage in employment or other activities, they may not be utilise them as their child’s transport needs do not meet the criteria. However, The NDIS will not provide funding in these cases as it is assumed that mainstream services will meet these needs.

Out of school hours care

Carers of children accessing the NDIS are continually reporting to Carers NSW that care outside of school hours is not being funded for children, as inclusive vacation and after school care are considered to be the responsibility of the NSW Government. However, in some cases, children’s support needs are too high to be safely accommodated by mainstream services, leaving parents with no other option than to reduce or relinquish their paid employment.

Voluntary out of home care (VOOHC) is another support type that is deemed to be outside the scope of the NDIS. It is our understanding that families of children are not eligible for funded short term accommodation in their NDIS plan, as ongoing care in the home is considered to be a reasonable expectation of a parent. Despite this, VOOHC has been a key support available to families in NSW whose children with disability require temporary care in a residential environment to support their own safety and wellbeing, and that of their parents and siblings.

While out of home care continues to be available within the child protection system, Carers NSW believes that a separate pathway for families of children with disability should continue to exist, acting as a safety net for families in crisis who may be otherwise unable to access a needed break to support the sustainability of family care arrangements.

The subsequent return to a crisis model

Carers have reported that in some cases, plan gaps are only addressed when a significant threat to the caring arrangement arises (e.g. breakdown in caring relationship resulting in the participant entering care). Where service gaps have been significant, carers have reported that caring arrangements have been jeopardised, resulting in intervention from the NSW Department of Communities and Justice (DCJ, formerly the Department of Family and Community Services, FACS), or Members of Parliament to advocate for sufficient services to enable ongoing caring arrangements to continue.

“My sister’s initial plan was completely inadequate and it was only when I got access to my local member at a forum that her plan was reviewed. It actually took a threat of me handing her over completely that resulted in the appropriate funding to allow my sister to remain in her home, for me to access suitable day program hours and respite which have allowed me to retain my full time job.” - Carer NSW 2018 Carer Survey respondent

The NDIS aims to move away from a crisis model to a capacity building model, however inadequate plans that do not take into

consideration the supports required to sustain informal caring arrangements and extensive delays in the review process, resulting in insufficient supports and services, has resulted in a return to a crisis approach, where resources are directed to crisis management as opposed to preventative supports.

Recommendations for addressing plan gaps:  Increased training for NDIA representatives in the role of carers and supports to sustain informal caring arrangements that can be funded in a participants NDIS plan  The inclusion of Coordination of Supports for all participants to enable the ongoing capacity building of participants and carers  A review of mainstream services and ongoing collaboration and negotiation with State and Territory Governments to identify and address service gaps

h. the review process and means to streamline it;

Scheduled reviews

Delays

NDIS plans outline funded supports for specified period of time, generally one year. When the end date of the plan is nearing, a “The NDIS plan for my 7 plan review should be initiated by the NDIA to enable a review year old child who is ASD of funded supports for the current period, including a review of 1 was delayed in being goals and supports, to develop a new plan for the subsequent funding period. Reviews should be timely and renewed. The old plan thorough, allowing a seamless transition from one plan to the expired and there was a 6 next. However, carers have reported numerous issues week gap before the new throughout the scheduled review process including delays, lack plan was approved. This is of consultation and significant cuts to funding resulting in lapses not acceptable. It was in services, increased caring duties and psychological distress stressful, created as carers try to resolve these issues. unneeded follow up work for me, it puts financial The NDIS Operational Guidelines indicate the “The NDIA must pressure on the support conduct a review of a participant’s plan before the plan’s review services that my son date…”.26 Carers NSW has received reports from carers that accesses as they could they have experienced delays of up to 6 weeks in accessing a not be paid (unless I paid plan review and receiving a new plan. This has placed pressure out of pocket, which I was on services to provide in-kind supports whilst not knowing if reluctant to do given I had these services will be reimbursed, or cease supports while the no idea if I would be participant awaits a new plan, disrupting continuity of supports reimbursed)“ and increasing the responsibilities of carers. - Carer NSW 2018 Carer Survey respondent Whilst Carers NSW commends the NDIA on its recent initiative to extend expiring plans for 28 days to ensure no lapses in funding if plan reviews are delayed, concerns remain that this will not adequately address the delays. Plan extensions, while enabling continuity of

26 National Disability Insurance Agency (NDIA) (2019), Planning Operational Guideline – Reviewing and changing a participants plan. Available online at: https://www.ndis.gov.au/about-us/operational-guidelines/planning-operational-guideline/planning-operational-guideline-reviewing-and-changing-participants-plan, last accessed 12 September 2019.

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supports, create ongoing uncertainty for participants and carers and do not enable a review of supports to ensure that they appropriate and continue to meet participant’s needs.

Carers have also reported to Carers NSW that scheduled plan reviews have been conducted by the NDIA with no consultation with participants, families or carers. Additionally, in some cases, carers have reported that they were not notified that a new plan had been released by the NDIA, only happening upon it in the NDIS portal. “75% reduction in core Failure to engage or include participants and their nominees in supports with the second scheduled plan reviews directly contradicts the NDIA’s plan which allows for only commitment to participant directed services and inclusion 1.5 hours support per throughout the planning process. week. This has also increased the amount of Significant decreases in funding time I need to spend Whilst the NDIS aims to build capacity of participants, decreasing taking him to long-term support needs through early intervention, many NDIS appointments as I have a participants have significant disabilities which will require ongoing vision problem and now long-term intervention to achieve or maintain optimal levels of need to take him on public function, engagement and participation. Additionally, some transport, which takes participants will have minimal improvements, especially those twice as long.” with quite stable significant impairments, therefore, their support - Carer NSW 2018 Carer needs will remain high with each plan review. Survey respondent Many carers have reported unexplained significant cuts to funding, commonly 30-50%, with as high as a 75% reduction in core supports, following the end of the participant’s Year 1 plan and the review, development and finalisation of their Year 2 plan. These dramatic funding cuts have resulted in confusion and concern from carers who worry about the security of supports for care recipients, with unpredictable outcomes at plan reviews.

Carers have reported increased difficulty in securing and retaining support workers who are able to develop effective “Our NDIS funding was cut working relationships with participants due to the ongoing by over $10,000 at our last uncertainty of future funding. Additionally, carers have reported review and this has had a that some services have had to be cancelled due to the significant impact on my greatly reduced funding, meaning that extra care tasks daughter’s support that have been placed on informal carers whilst they engage in the she accesses as we don’t lengthy, stressful review process to have the funds reinstated. have enough funding to continue with the level of Unscheduled reviews
support she has received An unscheduled review is an unplanned review of a in previous years. This participant’s plan that may be initiated by the NDIA or a affects us because without participant or their representative where there is an maintaining the same level administrative error in a plan, where funded supports are of support our daughter is believed to be inadequate or incorrect, or where there is an slowly going backwards unforeseen change in the participant’s circumstances which after all the hard work that requires a review of their supports to ensure that increased or has been put on to help changing support needs are adequately met. her get to where she was.”>

The latest quarterly report from the NDIA shows a steady - Carer NSW 2018 Carer downward trend in unscheduled reviews, suggesting ongoing Survey respondent improvements and accuracy in the planning process, however

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Streamlining Reviews

the number remains high with approximately 16%, or 1 in 7 plans, requiring an unscheduled review. Unscheduled reviews are administratively burdensome for carers, often requiring them to contact the NDIA repeatedly, gather further evidence, and support participants to attend additional meetings. Many carers have reported that there is often no acknowledgement by the NDIA that their review has been received, creating significant distress and potentially impacting on their employment as they are unable to plan for the future.

Carers have reported that NDIS plan reviews can take extensive amounts of time, with some carers waiting up to 10 “An emergency review months for the outcome of a review. During this time, carers took 3 months” may be unable to access the necessary supports to enable them to effectively and safely care for the participant. For those - Carer NSW 2018 Carer requiring an urgent review, in cases where there has been a Survey respondent significant change in circumstances, carers have reported that there has been no urgency shown by NDIA, with reviews still taking In excess of 3 months, creating significant distress, especially in situations where the caring arrangement is no longer viable.

Carers have reported that even small errors, including administrative errors made by the NDIS, require a full plan review to rectify. This is not only time consuming and stressful for participants and carers, but following plan reviews, if changes are actioned, a whole new plan is often provided to participants, making service agreements and service bookings with providers null and void. This creates yet further administrative work for participants and their carers to re-negotiate with providers and complete new service agreements.

A process allowing small changes to be made or errors to rectified without the provision of a new plan would likely speed up the review process and enable more seamless service delivery, reducing stress for participants and their carers. Additionally, increased communication throughout the review process would reduce carer distress and uncertainty.

Recommendations for streamlining reviews:

       - The introduction of ‘soft’ plans which enable participants and their representatives to review plans and discuss concerns prior to finalisation
       - Simplified plan reviews, or the implementation of longer plans for people with significant, stable disability
       - The ability to apply for small amounts of additional funding to meet changing participant needs without a full plan review
       - Increased ability for administrative errors in NDIS plans to be rectified without full review and issuing of a new NDIS plan
       - The introduction of a means to enable areas of a plan to be reviewed without a whole plan review
       - Timeliness requirements for scheduled and unscheduled reviews
       - Increased communication with participants and carers throughout the review process