Challenges in NDIS planning cycle impacting carers’ health and wellbeing | External submission

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 2

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 20181 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.

1 National Disability Insurance Agency (NDIA) (2019), NDIS Family and Carer Outcomes 30 June 2018. Available online at: https://www.ndis.gov.au/media/1548/download, last accessed 10 September 2019. 2 Carers NSW (2018), Carers NSW 2018 Carer Survey: Summary report. Available online at: http://www.carersnsw.org.au/research/survey, last accessed 12 September 2019.

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%).3 The Survey of Disability, Ageing and Carers (SDAC)4 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. 5 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.6

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.

3 National Disability Insurance Agency (NDIA) (2019), NDIS COAG Disability Reform Council: Quarterly report, 30 June 2019. Available online at: https://www.ndis.gov.au/media/1611/download, last accesses 12 September 2019. 4 Australian Bureau of Statistics (ABS). (2012). Intellectual Disability, Australia, 2012: Areas and types of assistance needed. Available online at: https://www.abs.gov.au/ausstats/abs@.nsf/Lookup/4433.0.55.003main+features202012, last accessed 12 September 2019. 5 Australian Bureau of Statistics (ABS). (2016). ABS Survey of Disability, Ageing and Carers: 4430.0 - Disability, Ageing and Carers, Australia: Summary of Findings, 2015: Autism in Australia. Available online at: https://www.abs.gov.au/ausstats/abs@.nsf/Latestproducts/4430.0Main%20Features752015?opendocument&tabname=Summary&prodno=4430.0&issue=2015&num=&view=, last accessed 12 September 2019. 6 Australian Bureau of Statistics (ABS). (2016). ABS Survey of Disability, Ageing and Carers: 4430.0 - Disability, Ageing and Carers, Australia: Summary of Findings, 2015: Psychosocial Disability. Available online at: https://www.abs.gov.au/ausstats/abs@.nsf/Latestproducts/4430.0Main%20Features902015?opendocument&tabname=Summary&prodno=4430.0&issue=2015&num=&view=, last accessed 12 September 2019.

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 “First plan did not include lives of their family members and carers. Whilst the NDIA has any assistive technology reported the employment of specialists for consultation and has despite the OT report

increased  specialist  teams  and  consultation  for  some        stating new wheelchair

conditions (e.g. psychosocial disabilities), all plans should be was required and shower guided by, or developed in consultation with, qualified health or chair was on loan and not

entirely suitable. Wemedical  professionals who  have  an  adequate  level  of

submitted an admin review professional training to understand the impact of significant thinking it was in error. disability on the participant, their family members and carers. 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          - Carer NSW 2018 Carer

specialist training or experience in disability to conduct planning Survey respondent 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

7 National Disability Insurance Agency (NDIA) (2019), NDIS Family and Carer Outcomes 30 June 2018. Available online at: https://www.ndis.gov.au/media/1548/download, last accessed 10 September 2019. 8 Ibid 9 Ibid

ways to enable increased participation of both the participant and carer. 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

“The person's health is soqualified  professionals  to make  funding  decisions,  these

complex/complicated thatdecisions are guided by the opinion or advice of qualified

the  LAC   could   notmedical and health professionals. Where concerns arise that a

understand  and  tried  toconflict  of  interest  exists  in regards  to assessments and

exclude  me  from   therecommendations from medical or health professionals, further

interview so we had to putguidance should be sought by NDIA representatives from in a complaint to NDIA andappropriately qualified professionals who are able to interpret

get an NDIA planner.”and  review  them.  Where  recommendations  are  not

implemented   in  a   participant’s  NDIS   plan,   further

Carer NSW 2018 Carercommunication should be made with the participant or their Survey respondentnominee to provide feedback, enabling greater transparency and consistency and reducing distress for participants and carers.

The Independent Assessment Pilot (IAP)10 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.

10 National Disability Insurance Agency (NDIA) (2019), Independent Assessment Pilot (IAP). Available online at: https://www.ndis.gov.au/applying-access-ndis/how-apply/information-support-your-request/independent-assessment-pilot-iap, last accessed 12 September 2019.

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

Survey 2018 indicated that the majority (72%) of carers of NDIS the [NDIA representative] I participants agreed that they had been included in the planning was told no less than 5 process, while just over one third (38%) indicated that they had times that nothing I say or been asked about their needs as a carer.11 write will be taken into consideration as I am his In some cases, carers have reported that they have been mother and therefore

excluded from  the  planning  conversation.  In  other  cases,      cannot be impartial.  I am

participants themselves have been excluded, either because the appalled by the way carers planner has told the carer that they do not need to be there, or are treated by [NDIA

because  appropriate communication  aides have  not been       representatives] - I am his

implemented. Other times, supporters and advocates, including nominated representative service providers and practitioners, have been deterred from and his advocate but am participating. 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.

11 Carers NSW (2018), Carers NSW 2018 Carer Survey: Summary report. Available online at: http://www.carersnsw.org.au/research/survey, last accessed 12 September 2019. 12 Carer Recognition Act 2010 (Cth). Available at: https://www.legislation.gov.au/Details/C2010A00123, last accessed 12 September 2019.

The Productivity Commission (2011)13 further recommended that where participants have high informal care needs, an additional independent assessment of carer needs should be conducted. However, this has not been implemented, and while the new Integrated Carer Support Service (ICSS)14 will enable independent carer assessments and referral to supports including counselling, coaching and peer support, it 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 without my say he doesn’tto the NDIS planner. Carers have raised concerns that the understand… they need tomisinterpretation or miscommunication of information between listen to parents andLACs and NDIS planners has resulted in plans that are not carers.”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’

certain promises of            aims  to  enable  discussion,  negotiation  and  explanation

inclusions were made throughout the development of the plan. Providing plan drafts or 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

Carer NSW 2018 Carer 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.

13 Productivity Commission. (2011). Disability Care and Support: Inquiry report. Available online at: https://www.pc.gov.au/inquiries/completed/disability-support/report, last accessed 13 September 2019. 14 DSS (2018) ‘New services for carers’. Available online at: https://www.dss.gov.au/sites/default/files/documents/04_2018/fact_sheet_-_new_services_for_carers.pdf, last accessed 25 June 2018; DSS (2018) Integrated Carer Support Service: Regional Delivery Partners: A draft regional delivery model discussion paper. Available online at: https://engage.dss.gov.au/integrated-carer-support-service-regional-delivery-model/icss regional-delivery-model-discussion-paper/, last accessed 25 June 2018

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 201817 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.

15 Productivity Commission. (2011). Disability Care and Support: Inquiry report. Available online at: https://www.pc.gov.au/inquiries/completed/disability-support/report, last accessed 13 September 2019. 16 National Institute of Labour Studies (NILS) (2018), Evaluation of the NDIS: Final report. Available online at: https://www.dss.gov.au/sites/default/files/documents/04_2018/ndis_evaluation_consolidated_report_april_2018.pdf, last accessed 19 September 2019. 17 National Disability Insurance Agency (NDIA) (2019), NDIS Family and Carer Outcomes 30 June 2018. Available online at: https://www.ndis.gov.au/media/1548/download, last accessed 10 September 2019.

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 Survey18 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 respite effect, the absence of respite as a term has created a necessity for carers to adjust their vocabulary when developing an NDIS 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.19

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.20

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 NDIS. Without respite services, the sustainability and success of the scheme are imperilled.”21 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.

18 Carers NSW (2018), Carers NSW 2018 Carer Survey: Summary report. Available online at: http://www.carersnsw.org.au/research/survey, last accessed 12 September 2019. 19 Carers Australia (2018), Review of NDIS respite care decisions by the Administrative Appeals Tribunal – A resource for carers. Available online at: https://www.carersaustralia.com.au/files/download/?id=1919, last accessed 12 September 2019. 20 McCann, D., Bull, R., & Winzenberg, T. (2012), The daily patterns of time use for parents of children with complex needs: A systematic review. Journal of Child Health Care, 16(1), 26–52. https://doi.org/10.1177/1367493511420186. 21 Productivity Commission 2017, National Disability Insurance Scheme (NDIS) Costs, Study Report, Canberra. Available online at: https://www.pc.gov.au/inquiries/completed/ndis-costs/report/ndis-costs-overview.pdf.

Although there has been ongoing rhetoric about the important role of respite services, evidence suggests that respite continues to be excluded from or inadequately provided for in NDIS plans. A number of cases in which insufficient supports providing a respite effect have been included into a plan have been reviewed by the Administrative Appeals Tribunal, with a number of NDIA decisions varied to increase respite or replacement care to ensure the wellbeing of the family and carers of the NDIS participant (JQJT and NDIA; PNMJ and NDIA; PNFK and NDIA). 22

However, carers have become increasingly reliant on the assessment outcomes and choices of the person they care for. It is implied that a well-supported person will rely less heavily on a carer creating a trickle down affect that negates the need for respite, however this line of thinking is flawed as it implies that all care recipients are willing to accept outside support, that outside support is sufficient and that the person receiving care is aware of the needs of their carer.23 A carer’s ongoing need for support is clear but we acknowledge that this support does not necessarily need to take the shape of respite or be labelled as such. At the core of respite as a service type is a need for carers to take a break, be recognised, gain new skills, improve health and wellbeing and have an opportunity to undertake activities of their choosing. While it is possible to achieve these outcomes within the context of the NDIS, these carer outcomes are not overtly addressed and as a result are absent from many NDIS plans that do not recognised the carer support needs.

Carers NSW recommends the increased training of NDIA representatives in the role of carers and the need to ensure adequate supports are funded in a participant’s NDIS plan to ensure the ongoing sustainability of caring arrangements and optimal outcomes for not only participants, but also their families and carers.

Co-ordination 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 by the NDIA as likely to have particular difficulty implementing receipt of an aged their plan, and in need of intensive capacity building. While the pension. My son’s NDIS decision making criteria for allocating CoS are not publicly Plan was approved in

available,   it  is Carers NSW’s understanding  that CoS  is                                                             2/2018 but a support

considered ‘reasonable and necessary’ on the basis of particular coordinator was not criteria indicating ‘complexity’ that do not explicitly include the funded. He has been circumstances and the needs of the carer. As a result, Carers unable to find any

NSW  is aware  of many cases  in which carers and  their                                                                  assistance so far in

supporters – even LACs  in some cases – have  explicitly                                                                    gaining supports provided

requested that CoS be funded on the basis of the carer’s lack of in plan.” capacity to implement the plan and have been denied this support, or have received inadequate funding for it.

Carer NSW 2018 Carer Survey respondent

22 Carers Australia (2018), Review of NDIS respite care decisions by the Administrative Appeals Tribunal – A resource for carers. Available online at: https://www.carersaustralia.com.au/files/download/?id=1919, last accessed 12 September 2019. 23 Carers Australia (2018), Review of NDIS respite care decisions by the Administrative Appeals Tribunal – A resource for carers. Available online at: https://www.carersaustralia.com.au/files/download/?id=1919, last accessed 12 September 2019.

In most of these cases, there was a clear expectation that the “Suddenly I had to become carer – who is often ageing, experiencing their own health or

a case manager  without      mental health issues, may be from a culturally and linguistically

any experience (we had diverse (CALD) background and/or lacking skills and confidence

one   under    his    prior       with dealing with service providers and using the internet –

funding).   I  spend many      would take responsibility for coordinating the supports of their

many    hours    weekly      son or daughter with disability.

organising   all  his  care

arrangements as he has Some of these carers were previous clients of the ADHC funded

many appointments  daily      Older Parent Carer Support Coordination program, which

to manage and  far more      provided carer-focused case management and other support,

services to juggle, all who       but were  still deemed as  not  requiring CoS. Most were

need  my   attention   to      completely  overwhelmed  by  the  prospect  of  having  to

supply     materials     or      coordinate  the  participant’s  supports,  received inadequate

information.  I  don't know      guidance to do so and as a result either did not successfully

what I am doing as I am not implement the plan, did so at the cost of their own health and

a   professionally   trained       wellbeing, or relied heavily upon the support of service providers

care provider.” 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

24 Federal Court of Australia (2017), McGarrigle v National Disability Insurance Agency. Available online at: https://www.judgments.fedcourt.gov.au/judgments/Judgments/fca/single/2017/2017fca0308.

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                                                       “My sister's initial plan was

pathway for families of children with disability should continue completely inadequate to exist, acting as a safety net for families in crisis who may be and it was only when I got otherwise unable to access a needed break to support the access to my local sustainability of family care arrangements. member at a forum that her plan was reviewed. It The subsequent return to a crisis model actually took a threat of me handing her over Carers have reported that in some cases, plan gaps are only completely that resulted in addressed when a significant threat to the caring arrangement the appropriate funding to arises (e.g. breakdown in caring relationship resulting in the allow my sister to remain participant entering care). Where service gaps have been in her home, for me to significant, carers have reported that caring arrangements have access suitable day

been jeopardised,  resulting  in  intervention from the NSW

program hours and respite Department of Communities and Justice (DCJ, formerly the which have allowed me to Department of Family and Community Services, FACS), or retain my full time job.” Members of Parliament to advocate for sufficient services to enable ongoing caring arrangements to continue. - 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

25 NSW Government (2019), ASTP and the NDIS. Avaliable online at: https://education.nsw.gov.au/public-schools/astp/ndis, last accessed 13 September 2019.

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 participant goals and supports, to develop a new plan for the renewed. The old plan subsequent funding period. Reviews should be timely and expired and there was a 6 thorough, allowing a seamless transition from one plan to the week gap before the new

next.  However,  carers  have  reported  numerous  issues       plan was approved. This is

throughout the scheduled review process including delays, lack not acceptable. It was of consultation and significant cuts to funding resulting in lapses stressful, created in services, increased caring duties and psychological distress unneeded follow up work as carers try to resolve these issues. for me, it puts financial pressure on the support The NDIS Operational Guidelines indicate the “The NDIA must services that my son conduct a review of a participant’s plan before the plan’s review accesses as they could date…”.26 Carers NSW has received reports from carers that not be paid (unless I paid they have experienced delays of up to 6 weeks in accessing a out of pocket, which I was plan review and receiving a new plan. This has placed pressure reluctant to do given I had

on services to provide in-kind supports whilst not knowing  if      no idea if I would be

these services will be reimbursed, or cease supports while the reimbursed)” participant awaits a new plan, disrupting continuity of supports 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 participant’s 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.

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 significant reduction in 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

the number remains high with approximately 16%, or 1 in 7 plans, requiring an unscheduled review.27 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

27 National Disability Insurance Agency (NDIA) (2019), NDIS COAG Disability Reform Council: Quarterly report, 30 June 2019. Available online at: https://www.ndis.gov.au/media/1611/download, last accesses 12 September 2019.