Carers NSW Australia
31 March 2021
Joint Standing Committee on the National Disability Insurance Scheme PO Box 6100 Parliament House Canberra ACT 2600 ndis.sen@aph.gov.au
Carers NSW welcomes the opportunity to provide a submission to the Joint Standing Committee on the National Disability Insurance Scheme (NDIS) inquiry into Independent Assessments. The content of this submission closely mirrors that which Carers NSW provided to the NDIA in response to its recent consultation paper on Independent Assessments, however here we outline further concerns regarding the consultation process that have subsequently emerged.
Carers NSW is the peak non-government organisation for carers in NSW. 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 part of the National Carer Network and a member of Carers Australia. 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.
Yours sincerely,
Elena Katrakis CEO Carers NSW
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Introduction
Carers NSW thanks the Joint Standing Committee for the opportunity to provide feedback on the proposed implementation of Independent Assessments within the National Disability Insurance Scheme (NDIS). Carers NSW has been surprised, in light of the recently concluded consultation process, at the rapid progress of the Independent Assessments reform, and wishes to express concern that contracts were announced so soon after the consultation’s closing date. The lack of engagement with critical feedback in the recently published consultation report is also concerning, given the widespread criticism voiced by key sector stakeholders regarding fundamental aspects of the changes.
Carers NSW is disappointed that the public consultation process appears to have been brought in as an afterthought, rather than to genuinely inform these significant changes which have far reaching implications for people with disability, their families and carers. We are therefore very pleased that the Joint Standing Committee is conducting an independent examination of Independent Assessments and urge the Committee to recommend an immediate pause in the rollout until a thorough and transparent evaluation of the recent pilots is published and further consultation and co-design is undertaken with people with disability, their families and carers, as well as the organisations that support and represent them.
Carers NSW believes in the importance of autonomy and self-determination for people with disability and is supportive of policy and practice that facilitates their independence. Carers NSW recognises that not all people with disability receive informal support or would identify with having a ‘carer’. However, many Australians with a reported disability who need assistance receive at least some of that assistance from a family member or friend; in many cases, on a daily basis.1 Carers often play a key role in supporting the optimal participation and engagement of people with disability in their home and community life.
Carers NSW has previously raised concerns about the barriers many people with disability in NSW experience in accessing any, or adequate, support under the NDIS and the impact of these barriers on carers.2 As such, Carers NSW supports in-principle measures that aim to increase equity in access and reduce the financial and administrative load on carers supporting the person they care for to access the NDIS. However, many carers have raised concerns with Carers NSW that the nature in which Independent assessment policies have been developed and communicated has lacked transparency, eroding their trust in the Agency and confidence in the Scheme.
The release of three complex consultation papers by the NDIA regarding significant proposed reforms – including but not limited to the introduction and implementation of Independent Assessments – with responses for all due on the same day put considerable pressure on many people with disability, their families and carers, and organisations like Carers NSW who wanted to meaningfully engage in the consultation process and had significant concerns to express. The relatively short timeframe in order to respond limited the capacity of many of these groups to assess the proposed model for Independent Assessments in depth and to comprehensively convey their feedback.
Carers NSW was further concerned when, only three days after the closing date, the successful organisations that will make up the Independent Assessment Panel were announced. This announcement suggested to Carers NSW that the content of responses to the consultation was neither going to influence decision making regarding Independent Assessments nor result in any delay in implementation plans. This was confirmed in our reading of the consultation report, which indicated that feedback would be used to refine the implementation of Independent Assessments but not impact the overall direction or model.
1 Australian Bureau of Statistics (2019) Survey of Ageing, Disability and Carers 2018, TableBuilder Dataset, available online at: www.abs.gov.au 2 e.g. Carers NSW (2019) Carers NSW submission to the NDIS Joint Standing Committee inquiry into NDIS planning. Available online at: http://www.carersnsw.org.au/Assets/Files/CNSW%20Submission%20NDIS%20Planning%20Inquiry.pdf, viewed 17 February 2020.
The main concerns raised by carers with Carers NSW regarding the rollout of Independent Assessments are summarised below.
Carer recognition and inclusion
Carers have raised concerns that Independent Assessments may not provide adequate opportunities for assessors to gather information from carers, who are often experts in the support needs of the people they care for. While Carers NSW supports the self-reporting of capacity, goals and needs by people living with disability who are accessing or attempting to access the NDIS, carers can often contribute important complementary information for consideration, especially where an individual may have limited insight into the their support needs or have difficulty articulating these needs due to the nature of their condition.
Furthermore, carers are concerned that Independent Assessments may not provide opportunities to adequately assess the sustainability of caring arrangements or the support needs of carers. In response to the Carers NSW 2020 National Carer Survey3 only 1 in 3 carers of NDIS participants agreed that they were asked about their needs as a carer during the planning process, and fewer than 1 in 5 agreed that the services provided met their needs as carers. Only around half of the carers of NDIS participants who responded to the Survey found that NDIS services enabled them to take a break from providing care. These issues have been ongoing within the NDIS, and reforming the assessment process presents a natural opportunity to improve carer recognition and inclusion.
Carers NSW believes that assessors must be adequately trained and have opportunities to identify and gather information from carers, including carers’ own support needs, to ensure an accurate and thorough assessment of their participant’s support needs and the level of sustainable and reasonable informal support available to them. Inadequate carer recognition and inclusion has greatly contributed to inadequately funded NDIS packages in the past, and this needs to be addressed as the assessment process is reviewed.
It is also important that the new processes ensure streamlined referral of carers to supports under the Carer Gateway, and consider carers’ own support needs – where reasonable – within the funded NDIS supports.
The appropriateness of proposed assessment tools and methods
Carers have also raised concerns that the use of selected standardised assessment tools may undermine the person-centred approach of the NDIS, as assessment tools may not be appropriate or sensitive enough to capture the functional impairment associated with some disabilities or conditions, especially for diverse populations.
Fluctuating and episodic conditions in particular, such as psychosocial disability, may be difficult to assess in a single assessment, especially if the individual is in recovery or having a “good day”. Similarly, where a participant or potential participant has limited insight associated with their disability, self-reporting or standardised tools may result in an overassessment of functional capacity.
Additionally, standardised assessment tools are often not appropriate or valid for diverse groups such as culturally and linguistically diverse (CALD) or Aboriginal and Torres Strait Islander people; the use of inappropriate or invalid assessment tools will likely result in inaccurate or invalid results which are likely to disadvantage a participant or potential participant, their family members and carers.
Carers NSW believes that greater consideration of the appropriateness, sensitivity, validity and reliability of assessment tools is needed to ensure that assessments accurately capture and represent the functional capacity of individual NDIS participants or potential participants.
3 Carers NSW (2020) 2020 National Carer Survey, unpublished data.
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Limited review or appeal pathways
Carers have also raised concerns with Carers NSW about the potential inability to appeal Independent Assessments or have them reviewed. Carers have reported that this may disadvantage participants, their families and carers, especially where it is felt that assessments have not adequately captured the functional capacity of the participant or potential participant.
Consistent with these concerns, Carers NSW believes that there must be adequate opportunities for NDIS participants, potential participants, their families and carers to access a copy of an Independent Assessment and seek a review if they are not satisfied with the outcome. In these cases, redress pathways must be clear and transparent to enable participants and their carers to access them easily and effectively.
Reduced confidence in the continuity of supports
The noted possibility of participants being exited from the NDIS as a result of an Independent Assessment has caused significant concern for carers. Carers who already report considerably uncertainty and anxiety when going through the assessment and planning process with the participant, and when going through annual plan review, fear that if the person they care for is exited from the Scheme, the person’s and their own health, wellbeing and social and economic participation may be adversely affected.
Carers have noted that given a disability must be permanent and have a significant impact on the person with disability to enable eligibility for the NDIS, it is likely that even with capacity building enabling increased independence, many participants will require lifelong support through the NDIS to maintain their optimal level of function, participation and engagement. Supports that are not provided by the NDIS within NSW are generally provided by carers, as no residual disability and community care services are funded by the NSW Government. Caring arrangements outside of the NDIS are therefore often unsustainable for carers, especially those who are ageing, in paid employment, or who have a disability, mental health or chronic condition themselves.
Carers NSW believes that the NDIA must conduct more consultation with participants, their families and carers, community organisations that represent these groups and sector experts about the potential impact of exiting NDIS participants from the Scheme. Furthermore, Carers NSW believes that the NDIA must provide information regarding the circumstances under which a person may be exited from the NDIS and the process of exiting participants, including the transition to mainstream services where they may exist to restore confidence in the longevity of the Scheme.
Ensuring equity for those in rural, regional and remote areas
Carers NSW has also heard from carers a number of concerns relating to the potential impact of changes to the access and eligibility policy for participants, their families and carers who are living in regional, rural and remote areas of NSW. Carers have raised concerns that the use of independent assessors will further limit the availability of skilled and specialist allied health workforce that can provide therapy and intervention in the community, due to policies that may not allow them to act as both independent assessor and therapist.
Furthermore, carers in rural and regional areas have noted that Independent Assessments will likely further remove choice and control for participants and their carers, especially in rural, regional or remote areas where only one assessor or assessment provider may be available. Carers have also expressed concerns that limited access to independent assessors in regional, rural and remote areas may result in longer wait times to access assessments and increased pressure on carers to provide or facilitate transport to regional or metropolitan centres.
Carers NSW believes that far greater consideration of the impact of proposed access and eligibility policy reform on rural, regional and remote NDIS participants, potential future participants, their
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families and carers is needed to ensure that proposed reforms improve equity for those living in rural, regional and remote areas and do not create even greater barriers to accessing the scheme or the services and supports that they need.
Conclusion
Carers NSW believes that while review and reform of access and eligibility policy is necessary to increase equity and improve access to the NDIS, this reform will require much greater transparency, consideration and consultation with the community, including carers, to maintain confidence and trust in the Scheme and ensure optimal outcomes for participants, potential future participants, their families and carers.
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