Submission to Joint Standing Committee on the National Disability Insurance Scheme
mentalHealthCarersNSWInc.
The submission is regarding a review of NDIS participant experience in rural, regional and remote Australia
dated February 23rd, 2024 .
Prepared By:
redacted: email address forJonathan Harms, Chief Executive officer (CEO), mental health carers n s w . org- email address for
prashiela karan, policy officer , mental health carers n s w . org -
Email Address For Richard baldwn senior policy offcer mntal halth carrs nw or g
Contact Information:
Mental Health Carer’s Website Suite 2.03 Level 2 3 Spring St Sydney NSW 2000 Phone number +61 29332 0777
About Mental Health Carers NSW (MHCN)
Mental Health Carers NSW (MHCN) is the peak body for carers of people who experience mental illness in NSW. It is a community-based, non-government organisation that provides systemic advocacy, capacity development and education for the carers, family, friends and kin of those experiencing mental illness across NSW. It has also recently been funded under the Disability Advocacy Futures program to provide systemic advocacy on behalf of those who experience psychosocial disability.
There are currently 2.7 million unpaid carers in Australia, 39% of whom provide more than 40 hours of care per week. Due to the demands of their full-time caring role, carers are at a high risk for developing mental health issues. We work to ensure the voices of mental health carers in NSW and the people they love and support are represented and heard in policy and service reform processes to increase the willingness of the community to ensure their rights are upheld, (which requires services to realise them to be funded). We deavour to empower mental health carers and the people with experience of serious and persistent mental distress they care for to become champions for mental health reform and advocacy.
This submission provides MHCN’s views on the needs of people with lived or living experience of serious and persistent mental distress (consumers) who use the NDIS and their carers living in remote, rural and regional areas of NSW.
Executive Summary
Consumers and carers in regional, rural, and remote areas of Australia are forced to contend with inadequate markets of disability service providers resulting in a thin supply of services and high levels of unmet needs. Issues with inconsistent information and lack of communication, as well as fragmented services and limitations in the workforce are regularly reported and erode the faith of families in services to responsively meet needs.
We conducted a survey with mental health carers supporting an NDIS participant living in remote, rural and regional areas in NSW. In total, 14 carers responded to the survey. The survey responses, along with other reports, affirm the difficulties experienced in receiving access to psychosocial disability supports. There was a specific concern that the NDIS does not adequately support people with a mental health issue.
We reiterate recommendations made in our submission to the review of the NDIS in 2023. These recommendations are:
- State governments should be funded to maintain an independent, peer delivered ‘service navigation and case coordination’ support service, to assist those people who require it to manage their packages.
- There needs to be a more general NDIS market review of what can efficiently be provided by private operators or community managed organisations and what needs to be delivered as a federal government funded and state government delivered monopoly in each jurisdiction in order for it to be delivered on a cost-effective basis.
- There needs to be a Bill of Human Rights which mandates that people must get access to certain basic rights and supports and allows government to be sued for failure.
Scope of this Submission
This submission addresses the following terms of reference as published by the Joint Standing Committee on the NDIS:
a. the experience of applicants and participants at all stages of the NDIS, including application, plan design and implementation, and plan reviews; b. the availability, responsiveness, consistency, and effectiveness of the National Disability Insurance Agency in serving rural, regional and remote participants; c. participants’ choice and control over NDIS services and supports including the availability, accessibility, cost and durability of those services
Survey Results
Major challenges exist in accessing services in regional, rural, and remote areas. Reports by cars confirm that there are unmet needs because of difficulties in accessing the NDIS, limited and fragmented services, lack of understanding of psychosocial disability, and severe lack of support with navigation of the scheme.
(1) Application Process Impacted By Poor Communication
There were mixed experiences in relation to the application process. While there were reports that the application process was “fairly straightforward”, carers also responded that p oor communication and inconsistent information led to a difficult and stressful applica on process. Furthermore, there was evidence that not all supports were being funded, because not all disabili es were included by the mental health team in their applicaƟon:
“The mental health team submitted the application whilst he was [in a] mental health unit but they never put down any of his physical disabilities so we are having issues adding these to the plan for the support and modifications that are required for him. We have tried once for it to be reviewed but it was knocked by not enough evidence when he receives a disabilities pension for his physical disabilities. His health especially balance is getting worse with increased falls”.
Carers reported difficulƟes through the applica on process because of poor communica on. Carers described the process as being “Difficult. Access and informa tion were “in short, involuted, and stressful”, “Nightmare”, and “Slow”. A comment by one carer shows the lack of communicati n between services:
“There is no consistency across informatio !! Have you ever tried making an enquiry to the ndis? If you - * call the call centre OR * speak with someone at the local ndis / c entrelik office OR * speak with an LAC OR *speak with a Support Coordinator you w ill receive 4 different answers / replies (if you are lucky to have someone with an i nkling of what you are enquiring about)!! AND you are usually given the run around i .e.: Call Centre will say contact your local office, local office w ll say conta t our LA ,LAC wi l ay cont ct ur SC, C heads ar ed s needs go hrough LC r ndi plan er. It’s joke!!”
These results highlight some of the burdens that carers encounter throug the application p rocess, particularly becau e of oor communication and la k f supports wit navigatin gthe NDIS scheme from the ini al stages.
(2) Inadequate Plan Design Process
Few cares were sa tisfied with the plan design process. The pro ess was described as “poor’, homplicated”, “overwhelming, confusing and stressful”. There wa a sense tha sta had ala ckof understanding of wha required through he pla desig nprocess.
(3) Mixed satisfaction with plan funding received
Responses by participants were mixed, with approximately 50% indicating satisfaction with funding received. However, there was also frustration reported in advocating for needs bing met and understood. Furthermore, responses suggested that participants were not provided sufficient explanation around funding for plans and that funding was insufficient to meet needs. The impact of inadequate knowledge on the fluctuating nature of illness associated with psychosocial disability or mental health issues was evident:
“Not all workers in the NDIS (or LACs) understand the complexities of mental health and what can be the episodic nature of mental illness. Flexibility is key - this aspect is overlooked when working with providers as well. There are times where lots of support is required and then other times where the participant may not want/need as much support so will not use their funds. However, if funding is cut to their package, when there is an inevitable crisis there is not sufficient funding available for the additional support required at this time”.
Indeed, there were reports that it was difficult for NDIS to understand the needs of the person being cared for, as well as a failure to listen to where funds should be provided.
(4) Mixed experiences with plan implementation
Aproximately one third of respondents were satisfied with plan implementaon. Responses dicated that carers oŌen had to provide support to ensure needs were being met. A lack ofservices, and delays were idenified as negavely impacng plan implementaion. A further issue reported was the change in NDIS rules, which affected achievement of goals set out in the plan for the person receiving support.
(5) Lack of consistency with plan reviews
There was signi cant variability in plan reviews, with respondents being generally dissaƟsfied. Issues were wide-ranging, from being “non existent”, to “timely and effective”.. There was a major concern about the lack of adequately trained staff, services based in metropolitan areas that did not understand the challenges in rural areas and lack of aknowledgement of speci c condi ons requiring supports.
(6) Limited services and unmet needs
About 50% of carers were either satis ed or very satis ed that the person they were supporting had sufficient choice and control over NDIS services and supports. However, about 50% of survey respondents were either dissatis ed or very dissais ed that the person they were supporting had sufficient access to the services for which their plan had aapproved funding. About one third of respondents were either sa is ed and very sais ed. Responses highlighted long wai ng lists, including for speech therapists and psychiatrists and a need to travel for hours to access services. A further issue was that health
NDIS participant experience in rural, regional and remote Australia
Submission 40
The professionals had limited experience with particular disabilities, and support workers having only limited training. One carer stated,
“Look at individual participants more and stop grouping all diagnosed together e.g., Autism, everyone is different and so are their needs”. Limitations in the capacity of services to support persons experiencing mental health illness and problems was commonly reported by carers. For example, one carer stated, “NDIS is a good concept however clients in regional areas with chronic mental illness are not catered for I believe!”.
in addition, knowledge about mental health and psychosocial disability was reported as being inadequate, with one carer stating:
“Yes more understanding should be shown when NDIS are dealing with challenging mental health people - in my experience the NDIS showed no knowledge at all about mental health”. Furthermore, there were significant concerns about the availability of qualified, skilled, and experienced NDIS supports, including for psychosocial supports and recovery coaches. The need for monitoring and meeting professional development requirements was also highlighted. The lack of appropriate and adequate services was reportedly resulting in rehospitalisation, and NDIS funds largely unused because NDIS support workers needed dismissing; family members or friends stepping in providing support. Responses indicated that variability existed within service standards provided which resulted in high demand regarding specific assistance required. As one caregiver noted, “At first we struggled finding suitable providers – now extremely happy with our current provision.” Altogether these reports confirm what has previously been documented extensively: Regional, remote & rural regions face severe shortages concerning available resources/services whilst highlighting issues relating to quality alongside insufficient capacity delivering sufficient care particularly amongst individuals impacted by psychological disabilities.
Inappropriate Structures Underpinning the NDis
Carers have described substantial widespread barriers accessing supportive provisions among persons affected through a condition involving social-emotional difficulties. There is necessity critically reviewing arrangements between federal state governments pertaining towards delivery supporting programs addressing fragmentation existing across various sectors ensuring workforce training occurs effectively. Furthermore implementing complex healthcare needs via scheme structured as market - such example being implemented under National Disability Insurance Scheme (NDIS) proves inappropriate leading heightened unmet demands especially considering those experiencing mental health intellectual disability challenges. A review must be undertaken determining scope private organizations community managed entities can provide versus necessities requiring direct government involvement.
NDIS participant experience in rural, regional and remote Australia
Submission
as federal government funded and state government delivered. In regional and remote areas, even when funds are provided, adequate supports might not be available. Worse, services to address the needs of ‘high risk’ clients may not exist, as we stated in our previous submission:
there are many needs relating to disordered behaviour and ‘high risk’ clients that non-government organisations or services will always struggle to be able to provide due to the liability risk and difficulties in attracting and retaining sufficiently expert staff in roles long enough for them to become sufficiently expert to undertake their roles.
Because of the lack of specialist supports and teams, we argue, as in our previous submission, that unspent funds should be a KPI for the NDIA and should trigger a review on how the person can receive the supports when they are struggling to find a provider. Furthermore, choice and control should be promoted through accessing experts to assist with supported decision making. We have also noted in our previous submission on the NDIS that the system of assessment, and the need to litigate “reasonable and necessary” with the NDIA is inappropriate for people with psychosocial disability. The experience of distress experienced because of psychosocial disability can have many different causes and impacts, and be associated with fluctuations in health and wellbeing. Consequently, a flexible approach is needed, including a level of freedom that would allow for determining types of needed supports. Provide Service Navigation and Case Coordination Support Because of these gaps, it is left to families and carers to provide the best support they can, often stepping in, including to ensure plan implementation. Targeted supports for carers are lacking and consequently, there is a failure to effectively address the difficulties experienced by carers. This has resulted in carers experiencing burnout and poor wellbeing because of their caring role, in which they face the need to independently navigate complex schemes and services. As the results of this survey show, and in countless interactions with carers through various forums held by MHCN, navigating the mental health sector is terribly complex and frustrating. We have previously argued that peer services can effectively support families and carers, particularly as peer workers have firsthand experience navigaƟng systems. In this regard, it is criƟcal that:
state governments should be funded to maintain an independent, peer delivered ‘service navigation and case coordination’ support service.
This service can hugely benefit families through all stages of the scheme, including in the management of their package, should they require it. We have also advocated that such a service would support better coordinaƟon between sectors and state and federal funded services, as well as monitoring of services, providers, and idenƟcaƟon of unmet needs.
Recommendations
We reiterate the following recommendations as a matter of urgency:
- There needs to be a more general NDIS market review of what can efficiently be provided by private operators or community managed organisations and what needs to be delivered as a federal government funded and state government delivered monopoly in each jurisdiction in order for it to be delivered on a cost-effective basis.
- State governments should be funded to maintain an independent, peer delivered ‘service navigation and case coordination’ support service, to assist those people who require it to manage their packages.
- There needs to be a Bill of Human Rights which mandates that people must get access to certain basic rights and supports and allows government to be sued for failure.