Carers Victoria submission
Joint Standing Committee on the National Disability
Insurance Scheme
SEPTEMBER 2019
AN AUSTRALIA THAT VALUES AND SUPPORTS ALL CARERS
ABOUT CARERS VICTORIA
Carers Victoria is the state-wide peak organisation representing people who provide care. We represent more than 736,600 family carers across Victoria – people caring for someone with a disability, mental illness, chronic health issue or an age-related condition.
People receiving care could be a parent, child, spouse/partner, grandparent, other relative or friend. Carers Victoria is a member of the National Network of Carers Associations, and the Victorian Carer Services Network. Carers Victoria is a non profit association which relies on public and private sector support to fulfil its mission with and on behalf of carers.
Carers Victoria is a membership-based organisation. Our members are primarily family carers, who play an important role in informing our work, contributing to advocacy and strategic aims, and distributing information more widely to other carers.
This policy paper was prepared by Carers Victoria’s Policy Team.
© Carers Association Victoria 2019.
This work is copyright. Apart from any use as permitted under the Copyright Act 1968, all other rights are reserved. Requests and inquiries concerning reproduction and rights should be addressed to the Copyright Officer, Carers Victoria, PO Box 2204, Footscray, Victoria, 3011.
For information contact:
Scott Walker
Chief Executive Officer
Carers Victoria
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CONTENTS
Introduction ………………………………………………………………………………………………… 4
Ability of planners to understand and address complex needs ……………………………. 7
Ongoing training and professional development of planners ………………………………. 9
Overall number of planners relative to the demand for plans …………………………….. 10
Participant involvement in planning processes and the efficacy of introducing draft plans ……………………………………………………………………………………………………….. 11
Incidence, severity and impact of plan gaps …………………………………………………… 12
Participants with psychosocial disability ……………………………………………………… 12
Overnight respite care ……………………………………………………………………………… 13
Specialist Disability Accommodation (SDA) ………………………………………………… 14
Participants living at home with ageing parents ……………………………………………. 15
Contingencies ………………………………………………………………………………………… 17
The reassessment process, including the incidence and impact of funding changes 17
The review process and means to streamline it ………………………………………………. 17
The incidence of appeals to the AAT and possible measures to reduce the number 18
Circumstances in which plans could be automatically rolled-over and in which longer plans could be introduced……………………………………………………………………………. 19
Adequacy of the planning process for rural and regional participants …………………. 19
Other related matters …………………………………………………………………………………. 20
Community awareness and education………………………………………………………… 20
Conclusion ……………………………………………………………………………………………….. 20
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Introduction
Carers Victoria has over 25 years’ experience linking carers to service and support systems.
Carers Victoria continues to support the goals of the National Disability Insurance Scheme (NDIS) and applauds the Federal Government’s commitment to giving greater choice and control to people with disability, their families and carers. Carers Victoria has a dedicated NDIS Advisory team funded by the Victorian Government’s Transition Support Program. The team supports carers, and participants in care relationships through the whole journey of the NDIS.
This submission is also informed by extensive contact with families and carers in the context of our service delivery undertaken in relation to disability and the NDIS since
- Carers Victoria has done this in partnership with the National Disability Insurance Agency and the Victorian Government. This includes:
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NDIS information sessions delivered face to face to Victorian carers in metropolitan and regional areas across the State (delivered as a disability support organisation in partnership with NDIA)
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Four-part NDIS education workshop series on pre-plan and post-plan implementation
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Comprehensive NDIS pre-planning peer support program, including online support program
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NDIS Advisors directly supporting families and carers with access, pre- planning and plan implementation challenges
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Information provision to families who use Victorian government run facility- based respite care regarding the divestment of service provision
As a result, Carers Victoria has unique insights into the operations of the Scheme and the pivotal role of planning in achieving its full potential.
Carers Victoria notes many participants are getting access to reasonable and beneficial plans. However, there are structural problems associated with planning which require greatly improved systems and practices.
The NDIS website states:
Families and carers provide help and support that cannot be provided by formal services or paid support workers. One of the core aims of the NDIS is to better support you in your caring role.
Your views and experiences will be important in the planning process for the NDIS because you have a unique understanding of the person you care for.
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The NDIS Act 2013 has stated principles including:
(d) where possible, strengthen and build capacity of families and carers to support participants who are children; and
(da) if the participant and the participant’s carers agree—strengthen and build the capacity of families and carers to support the participant in adult life; and
(e) consider the availability to the participant of informal support and other support services generally available to any person in the community 1
To achieve the goal of building the capacity of families and carers and improve the lives of participants, the NDIS must enact its principles and introduce policies and procedures to actively engage families, carers and other supporters in planning
Carers Victoria recommends:
A carer assessment is completed as a part of NDIS planning processes
Reasonable and necessary supports are funded to sustain families and care relationships
Meaningful consideration by planners of the willingness of families and carers to continue to provide the same level of informal supports in the short, medium and long term
Directives for planners to obtain and incorporate a carer’s statement into the participant’s plan where there are known care relationships
An amount payable to carers when they manage a plan on behalf of a participant to compensate for time required to manage an NDIS plan
1 National Disability Insurance Scheme Act 2013, section 31
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Experience, expertise and qualifications of planners
The NDIS’ rapid roll-out offered increased services to many Australians quickly and equitably. However, the rush to introduce the scheme exposed gaps in the system. The major factor in the quality of NDIS plans has been the variable level of planner expertise.
While the NDIS is expected to double the number of Australian disability sector workers, skilled and experienced disability sector staff have not filled the growth in demand for planners.
As the Joint Standing Committee’s Report on market readiness for provision of services under the NDIS notes, “building the skills and capabilities of planners remains a challenge”.2 Families and carers have consistently reported to Carers Victoria the impact of poor NDIS planning processes and inadequate plans on participants, families and carers. Results of poor planning include discrepancies between supports discussed in planning meetings and those included in the final plan approved by the CEO’s delegate. This issue has most recently raised been raised in the Joint Standing Committee’s Report as well as Victoria’s Office of the Public
Advocate’s Report.3
As far as Carers Victoria knows, there are no minimum standards to work as an NDIS planner. While experience and qualifications are desirable, carers report planners often have very little understanding of the complexity of disability and caring. These varied levels of experience, expertise and qualifications have resulted in significant inconsistencies between plans. Plans can vary considerably depending on the planner assigned.
Carers Victoria staff have had conversations with planners who were unaware of the nuances of the National Disability Insurance Scheme Act 2013, details of the price guide and associated regulations. Advice provided by planners to participants and families can vary depending on which planner is spoken to, ranging from advice that reflects the planner’s own beliefs and values to advice that is just incorrect.
Local Area Coordinators (LACs) have reported they are often working to sign-up quotas. Carers report the result of this is they do not spend the time to understand the issues involved in developing an individualised plan. For participants with less complex conditions, this is not necessarily an issue, and NDIS planning can work well for an informed participant and carer. However, for people with more complex needs, this lack of training and knowledge results in gaps and inconsistencies in plans.
2 Commonwealth of Australia 2018 Market readiness for provision of services under the NDIS P. 15 3 Office of the Public Advocate (September 2018) The Illusion of ‘choice and control’; the difficulties for people with complex and challenging support needs to obtain adequate support under the NDIS
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Ability of planners to understand and address complex needs
While it is noted planners often lack “understanding and knowledge of disabilities”4, it should also be noted planners often lack understanding and knowledge of the complexity of care relationships including:
a) the impact of multiple care relationships b) the long-term evolution of supports provided to the person with disability (i.e. years of trial and error, long term advocacy with the Victorian Government for personalised supports and the expertise of carers and the person with disability in developing the right package of supports specific to their care relationship), and
c) the importance of continuity of support arrangements for the participant and their family and carers.
To help inform planners, carers have the option of developing their own Carer Statement and/or requesting a separate interview to support the person they care for during the planning meeting. A Carer Statement (in written or verbal form) may include:
how the caring role affects impacts the carers’ own personal needs and goals, for example – work, study, travel, social, family, cultural or religious engagement activities whether they are able and willing to keep caring for the person with disability in the same way in the short, medium or long-term other informal supports the person with disability has, such as family or friends, and any other information that would be important for the NDIA to know when assessing supports required.
“I wrote a ten-page carer statement. While it took a lot of time and was an emotional undertaking, I really believe it clearly articulated our family situation and helped to shape the supports we were able to access through the NDIS.”
, parent carer of three NDIS participants under 18 years of age.
In reporting on their compliance with the Commonwealth Carer Recognition Act (2010) the NDIA states: “The Agency promotes staff awareness and understanding of the principles contained within the Carers (sic) Recognition Act and the Statement
4 Commonwealth of Australia 2018 Market readiness for provision of services under the NDIS P. 12
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through online tools and resources…Carers can include a carer statement as part of the participant’s plan development, and this statement is recorded in the plan”.5
While the quote above is an illustration of positive incorporation of the Carer Statement, feedback from carers in Victoria demonstrates this opportunity is not systematically provided nor communicated when planners conduct planning sessions. This is despite continual advocacy by Australia’s National Network of Carers Associations to formalise and promote it. Moreover, Mental Health Australia’s
recent report, National Disability Insurance Scheme: Psychosocial Disability
Pathway, identified “Carers (formal and informal) can also experience significant stress and fatigue through the NDIS process, placing at risk their own mental health and capacity to undertake their crucial role.”6 At present, the inclusion of a carer’s statement is at the initiative of the carer and up to the discretion of individual planners.
“The Carer Statements containing valuable and useful information offered as evidence to be attached to LAC’s “gathering of information” session were often not acknowledged by the LAC and not sent onto NDIA delegate/planner.”
Letter from , Coordinator: regarding roll-out issues in Ovens Murray October 2017.
There is limited understanding of complex needs relating to the participant in their family and social context rather than solely disability support needs. At the most basic level, a participant whose parent’s relationship is breaking down, a participant in a sole parent household with no siblings and a participant with a large and supportive extended family will all have different needs even if they have similar disability support needs.
Participants and their families experience their complex needs at the intersection of multiple systems such as the health system, the education system and the justice system. If basic needs such as safety, nutrition and shelter are not met, it is next to impossible for participants to realise their goals and aspirations even with the support of the NDIS. For many participants and families, allocation of support coordination in plans is not a short term need until things are settled, but an ongoing need to prevent things “going off the rails” or to re-establish supports after a negative life event.
Employing more staff with lived experience of disability and caring would help to address problems associated with a lack of knowledge related to the disability and its impact on individuals and families. For example, a planner with a visual impairment would be more likely to understand the mobility and equipment needs of a participant
5 National Disability Insurance Agency Annual Report 2016-17, p. 218 (accessed 12 October 2018). 6 Mental Health Australia, May 2018 National Disability Insurance Scheme: Psychosocial Disability Pathway, page 31.
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with a visual impairment, and a planner with caring experience would be more likely to understand a family’s need future planning. However, it is paramount the planner matches the participant’s needs. Carers Victoria was involved with a carer and participant who had poor English and a planner with a hearing impairment. Even with support, communications between the parties was difficult and the allocation of the planner should have been reconsidered by their employer.
NDIS participants from Culturally and Linguistically Diverse (CALD) communities are under-represented in relation to the Australian population. Representatives of these groups report that many people do not understand what the NDIS is or how it operates. They are intimidated by the application process. Employing more planners from CALD communities would increase the number of CALD participants, make the NDIS more demographically representative and would also create employment opportunities.
Ongoing training and professional development of planners
To increase the skills and competence of planners, careful recruitment is needed, complemented by ongoing training as a mandatory requirement and with reportable performance indicators.
A reputable Registered Training Organisation could be contracted to tailor a planner skill set based on Certificate IV in Disability (CHC43115) core and elective units of competency such as:
CHCDIS009 Facilitate ongoing skills development using a person-centred approach
CHCDIS010 Provide person-centred services to people with disability with complex needs.
CHCADV001 Facilitate the interests and rights of clients
CHCCCS005 Conduct individual assessments
CHCCCS006 Facilitate individual service planning and delivery
CHCCCS023 Support independence and wellbeing
CHCCCS025 Support relationships with carers and families
This should be a minimum requirement and all planners must either have this qualification or be working towards it.
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Planners working on the Complex Support Needs Pathway should have a higher level qualification such as a degree in an allied health profession, with further specialisation in areas such as positive behaviour support, mental health, homelessness, family violence and the criminal justice system.
Specific mental health training is required for planners working with participants with psychosocial disability who also use mental health services. These planners must have adequate training and knowledge of mental health issues and understanding of the barriers to accessing the NDIS and other services.
There appears to be a high turnover of planners in some LAC organisations. To make planning a career of choice, it needs to be well remunerated. Wages are the strongest motivator in attracting and keeping skilled workers.
Experienced psychosocial disability support workers are not enticed to apply for LAC jobs. Most are over qualified for NDIS roles and informed of this during employment selection processes.
Overall number of planners relative to the demand for plans
The NDIA staffing cap and the volume of reviews both have a significant impact on the number of planners required to meet demand. Carers have reported waiting for considerable times to meet with a planner experienced in the disability of the participant. Carers Victoria is aware of planners being in such limited availability that they are copying and pasting sections from other participant’s reports.
Lack of planners means there is also a lack of post plan contact to ensure the plan is appropriate. LACs appear to be under financial pressure to write a high quantity of plans rather than high quality plans. For example, planners do not ensure participants without capacity to organise their own support have appropriate formal or informal support to implement the plan, contributing to plan underspend. This implementation gap is being filled by unpaid family and friend carers, whether they are willing to or not.
Carers Victoria has heard of participants not knowing if they have support coordination in their plan and of some planners having no time allocated for post application review.
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Participant involvement in planning processes and the efficacy of introducing draft plans
‘I requested at the planning meeting to use the same financial planner that had managed my son’s ISP over the years and also have the ability to employ workers who were not registered with the NDIS. It was suggested that I self-manage and the information was provided to me to help me decide. I was given two days to decide before the plan went in…The first thing I was told was that plan was going to be NDIA managed. This really distressed me as I specifically said that ] plan cannot be NDIA managed as his plan is designed to meet his complex needs and relied on some people that were not NDIA registered. The planner said I must have requested it. I said it needs to be changed.(This would never have happened if I had been allowed to look at the plan before it was submitted).The planner said I would have to ask for a review if I wanted it changed. I said ok I want a review. I was then told that if I had a review there was a chance that ] could get less funding than was in his current plan. So in effect she was threatening that if I reviewed the plan we may receive less funding.’
– Carer of participant with complex needs
Carers Victoria is aware of participants having discussions with a planner and then finding they have an approved plan, even though the participant or their nominee must sign all plans before being submitted.
Establishing rapport and open communication between the planner, the participant and their carer, will improve planning processes and outcomes.
Sometimes planners do not understand the difficulties for participants in expressing their needs. People with intellectual disability, autism spectrum disorder and psychosocial disability for example, may only slowly develop relationships of trust. A planner must spend time and understand the participant and their carer to get the best for all involved. It is very common for people to state they are “fine” with showering for example; however, they do not state it may take a family member prompting them 10 times over a 2-hour period before they get into the shower. Planners need to be skilled at interpreting what lays beneath a participant’s statement of being “fine”.
There have been reports of participants having a plan developed over the phone. While in some remote areas, this may be appropriate, this has been occurring with
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people who have significant mood and thought disorders and cognitive impairments. People receiving calls and being asked questions about their functioning, were unaware a planning meeting was occurring. The result is inadequate plans received in the mail, without enough appropriate supports.
Carers Victoria supports the introduction of draft plans to improve their quality and reduce the number of reviews to address plan errors.
Incidence, severity and impact of plan gaps
Participants with psychosocial disability
Carers Victoria has worked with many carers dealing with plan gaps, especially where the participant has psychosocial disability. The Mental Health Community Support Services (MHCSS) programs funded in Victoria had a greater scope than psychosocial support within the NDIS. The Victorian Government is transitioning this funding to the NDIS. Under the NDIS, if something is not on a plan, it does not receive funding and the p[participant does not receive a service.. Carers Victoria has heard of participants who had plan funding cut because they couldn’t find service providers. People with psychosocial disability and their carers often report having trouble getting support staff.
Mental health crises do not run to service delivery schedules. Attempted and completed suicides have already occurred as a result of the reduction in support workers as most people receiving MHCSS will not be eligible for the NDIS7 MHCSS have been delivered on a strength-based model. Positive aspects of their life have been developed and encouraged to influence more challenging areas. However, the underpinning of the NDIS insurance model is on functional impairment. While reasonable and necessary disability supports are determined in response to level of impairment, by overly concentrating on deficits the NDIS risks compounding participant problems.
Plans need to take account of the frequently episodic nature of illness experienced by a person with psychosocial disability. A year of stability may require fewer resources than a year of instability. Long term planning and budgeting are therefore very challenging. Greater flexibility regarding funding and service use will assist people who have mental illness and resultant psychosocial disability and their carers.
7 ABC, ‘NDIS transition prompts fears for community mental health services, advocates expect reduced quality of care’, https://www.abc.net.au/news/2018-08-12/fears-over-ndis-takeover-of-community-mental-health services/10106720, 22.08.2018, accessed 03.09.2019.
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Overnight respite care
The NDIS Independent Advisory Committee (IAC) report on Reasonable and Necessary Support for Families8 argues “the respite paradigm is fundamentally flawed. It meets the needs of one party at the expense of the other.” This report failed to address shifting the respite paradigm towards the benefits of quality time apart to sustain care relationships and the rights of carers to have to be available 24/7 and to self-directed time to themselves.
A significant area of concern is lack of planning for funding of facility-based respite. Many carers report to Carers Victoria planners display negative attitudes towards respite who tell them it is not available as a funded support. This process is a specific form of market stewardship likely to directly impact on the quality of life for people with disability, families and carers. Since rollout commenced in July 2016, it is evident there is a shortage of funding for facility-based respite because this is traditionally seen as supporting the carer rather than the person with disability. Long-standing facilities which were funded under State and Territory arrangements are under pressure to conform their business models to ‘market forces’ which are heavily influenced by a funding body still uncertain about its role as a market steward.9
Planned respite is essential to maintaining and sustaining care relationships and unplanned or emergency respite is essential for carers’ own physical and mental wellbeing – an assertion endorsed by Mental Health Australia’s Report. 10 During consultations Carers Victoria undertook in 2017, many carers reported being unable to attend their emergency or preventative health appointments because they were unable to find substitute care for their family member.
The capital costs for respite facilities cannot be addressed through inappropriate market stewardship. Around the country the problem reached crisis point with facilities shutting down or threatening to shut down due to lack of funding.1112 In the Barwon region of Victoria, a Department of Health and Human Services (DHHS)run out-of home facility is being converted into permanent accommodation. The ostensible rationale for this change is there is no demand for such a respite facility in the area; however, carers in the region haver reported to Carers Victoria their options for respite are being limited to activities which will only have a ‘respite-effect’ on families and carers i.e. the planning process is limiting and therefore artificially reducing demand for a previously much in-demand service. In addition, there is some risk providers who remain in business will select only clients who will allow them to maintain significant
profit margins whilst clients with more complex needs will not have the same
opportunity to exercise choice and control in the market.
Reasonable+and+Necessary+Support+for+Families.pdf
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10 11 https://www.abc.net.au/news/2018-08-30/st-giles-launceston-respite-care-service-closes/10184124 12 https://www.canberratimes.com.au/national/act/marymead-national-disability-insurance-agency-deal-gives-reprieve-for-families-shut-out-of-respite-20171003-gytbry.html
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The general lack of understanding and recognition of care relationships in Australia generally can be contrasted with the UK where individuals who provide a regular and significant amount of care for someone are entitled to a carer’s assessment from their Health and Social Care Trust.13 Social services develop a ‘care plan’ based on the carer assessment and the community care assessment of the person with care needs. The plan is intended to include the support and services both carer and person receiving care have been assessed as needing. Carer’s needs assessments are legislated in the Care Act 2014 and “for the first time, carers are recognized in the law in the same way as those they care for”.1415
Specialist Disability Accommodation (SDA)
Carers Victoria hears first-hand from participants, families and carers how the implementation of SDA policy has eroded confidence in eligibility for SDA being objectively assessed by skilled workers. Some families have reported LAC employees state their own knowledge of SDA is too poor to discuss the potential to explore housing and living options with the participant, family or carer as part of the planning conversation. Other participants who identify at their first planning meeting their number one goal is to find suitable housing outside the parental home, report being ignored.
We note the NDIA’s desire for potential SDA-eligible participants to exhaust their options in mainstream housing first. This results in an onerous process of applying for social or public housing or assessing the suitability of a “granny flat” arrangement. Such an assumption does not appreciate the ‘bricks and mortar’ of housing occurs within a context of complex succession planning (usually from ageing parent carers to siblings) and timely support to increase independent living skills.
Carers report the advice from LAC and NDIA planners to participants is when they have found a suitable accommodation placement, they must ask for an urgent review which will then involve the assessment of the person’s suitability for SDA to meet their needs. Aside from sending participants and their families on a potentially fruitless search for accommodation they are unlikely to be found eligible for or must wait many years for approval, the NDIA’s review processes are significantly under-resourced and participants, their families and carers wait many months for simple issues to be rectified as noted by last year’s report released by the Commonwealth Ombudsman.16
13 https://www.nidirect.gov.uk/articles/assessments-carers 14 https://www.disabilityrightsuk.org/assessment-process-carers-under-care-act 15 Barnes, D., Boland, B., Linhart, K. & Wison, K. (2017), Personalisation and social care assessment – the Care Act 2014, BJPsych, 41(3), 176-180. 16 Commonwealth Ombudsman Administration of reviews under the National Disability Insurance Scheme Act 2013:Report on the National Disability Insurance Agency’s handing of reviews, Report 03/ May 2018.
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Participants living at home with ageing parents
There are approximately 134,400 primary carers in Australia over the age of 65 years.17 Approximately 21,300 are parents over the age of 65 who care for their child with disability.18 According to the Australian Institute of Family Studies, there were nearly 5,000 parents aged 65 years and older in Victoria living with a son or daughter with a severe or profound disability, based on data from the SDAC 2009 and 2006 Census data.19 Succession planning is a known challenge for parents of adults with disability.20
Older parent carers are especially concerned about continuity of support after their death. Planning meetings are not sufficiently future-oriented to consider the housing and support needs of participants, particularly those over the age of 40 and living with parents who may be aged in their 70s, 80s or 90s. The sustainability of these care relationships is precarious as carers experience their own health problems or disability from advanced age. Of Victoria’s 239,000 primary carers over 37 per cent report living with a disability themselves.21 The absence of data collection to forecast demand in a variety of disability supports is alarming given the NDIS is the first national opportunity to do so.
Many ageing parents are anxious the eligibility criteria for SDA funded supports specifically excludes their children with intellectual disability. They have witnessed a myriad of policy changes which impact their ability to plan for their children’s future. State and Federal Government funding of ‘bricks and mortar’ for people with disability is deficient. This group of people are unlikely to be able to secure life-time tenure through home-ownership or the private rental market without significant government intervention such as no-interest loans or shared-equity schemes.
Older families who chose to keep our person at home now are at a severe disadvantage. No ageing parent that I know has a succession plan in place, as we cannot put that burden on our other children who have families of their own. Which means as we die a housing package will have to be allocated urgently and assistance from the agency to find homes and try and settle our family member into care.
Letter from to Hon Dan Tehan MP
and Hon Martin Foley MP August 2018
17 ABS Survey of Disability and Carers; Table 35.1 All persons, living in households, carer status, by geographic location, age and sex–2015, estimate 18 ABS Survey of Disability and Carers; Table 38.1 Primary carers, relationship of carer to main recipient of care, by age and sex of primary carers–2015, estimate 19 Qu, L., Edwards, B. and M. Gray Ageing Parent Carers of people with a disability, June 2012. 20 Bibby, R. (2013). ‘I hope he goes first’: Exploring determinants of engagement in future planning for adults with a learning disability living with ageing parents. What are the issues? A literature review. British Journal of Learning Disabilities, 41(2), 94-105. 21 ABS, (2015), Disability, Ageing and Carers, Australia, Victoria, Catalogue # 4430.0
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This cohort of participants and families face a very different trajectory in the short to medium term compared with current residents of SDA.
The absence of future-oriented planning sessions does not only concern housing, it is trend characterising plans for most participants over the age of 15. According to the NDIA’s own data collection such as the NDIS quarterly dashboards capacity-building supports sharply decline for participants aged over 15, with the bulk of funded supports focused on core supports. Only 9.4 per cent and 6.7 per cent of plans respectively target line items under the category of capacity building - daily activities (life transition planning including mentoring, peer support and skill development and training in an individual or group setting).
The data indicate a lack of future-oriented planning discussions and a sign of low Older expectations by the NDIA. The effects of such plans leave many people vulnerable to missing out on building essential independent living skills so they can participate more fully in the community. The NDIA’s published quarterly reports and ‘dashboards’ show this to be a consistent trend since rollout commenced. Table 1 below, shows a strong dissonance between participants, families and carers goals and the allocation of specialised disability support through the NDIS.
Baseline Outcomes– Participants 25+ Total Annualised Committed
Support for Active Participants with
and Approved Plan
63% choose what they do each day 6.8% for Capacity building – daily 77% want more choice and control in their activities life 23% have a paid job 2.3% for Capacity building – employment 18% participate in education, training or skill 24.1% for Core – social and civic development 0.2% for Capacity building – health 74% are happy with their home and wellbeing
Baseline outcomes – family/carers of participants age 25+
41% have made plans for when they are no longer able to care for their family member with disability
58% rate their health as good, very good or excellent
47% have friends and family they see as often as they like.
22% receive Carer Payment
38% receive Carer Allowance
34% work in a paid job
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Contingencies
As the NDIS is for reasonable and necessary supports, what this means is debated. Some carers would like for the participant to be able to use these funds to assist with emergency planning e.g., a bushfire evacuation plan or managing when a carer is in hospital. All plans for participants for whom carers regularly provide daily support need to allow for the contingency of the carer being unavailable at short notice. This may be due to the sudden illness, injury or death of the carer, the need for the carer to attend to other family members who need support, including the need to travel interstate and overseas.
As Victoria’s Equal Opportunity and Human Rights Commission has acknowledged in its 2012 report Desperate Measures poor inclusion of family and carers and recognition of their own needs will lead to crisis interventions with ‘relinquishment’ the most extreme decision families can face.22
The reassessment process, including the incidence and impact of funding changes
Carers Victoria has received complaints of delays in reviews and reassessments of up to six months. Another common complaint is that support coordination was only funded in the first plan and after 12 months, this service was withdrawn even through there is still a need for it.
While an original workforce of 10,00023 was expected, the NDIA has a staffing cap of 3,400. Lifting this cap will remove many of the delays associated with the NDIS.
Carers Victoria has been told of numerous reviews with exceptionally different findings from the original plan where expenditure has increased by tens of thousands of dollars, or occasionally reduced.
Carers Victoria supports the need for better planner training in reassessment and reconsideration of service coordination as an ongoing funded support for participants with complex needs.
The review process and means to streamline it
Good person-centred and family focused planning is the most effective method to reduce the number of reviews. Lifting the staffing cap and improving the quantity and
22 https://www.humanrightscommission.vic.gov.au/home/our-resources-and-publications/reports/item/153-desperate-measures-the-relinquishment-of-children-with-disability-into-state-care-in-victoria-may-2012 23 https://www.canberratimes.com.au/story/6192036/senators-claim-on-ndis-agency-is-true/?cs=14231
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quality of planners will also help to achieve this. A larger number and more stable staffing will enable better documentation and to operationalise good procedures.
Adequate plans for participants with complex needs have been a result of 6-12 months of meeting 1:1, pre-planning support, coaching /education and evidence gathering by carer support workers, as well as involvement by advocacy organisations, where required. Carers Victoria remains very concerned about what will happen to participants and carers with complex needs once Victorian government funded NDIS transition support services cease on 30 June 2020.
Planners need to spend more face to face time, where appropriate, with the participant and their carers to reduce the need for reviews.
When a review occurs, Carers Victoria has heard of participants receiving minimal information about how long the process will take. Introducing timelines where a review is considered within e.g., 28 days, will address many of these problems.
Carers Victoria supports calls by disability advocates to have review dates set by the participant or plan nominee, including indefinite plans and change of circumstances reviews initiated by the participant or their nominee when they feel it is needed.
The incidence of appeals to the AAT and possible measures to reduce the number
One of the key benefits of the Scheme is the opportunity for participants, families and carers to seek reviews of decisions, potentially appealing as high as the Administrative Appeals Tribunal and Federal Court. The purpose of these institutions is to provide independent review of a wide range of decisions made by the Australian Government. The power shift embedded in recourse to these review mechanisms cannot be underestimated: prior to the NDIS, people with disability, their families and carers were often subject to “…uncertain funding at the individual level…in tightly rationed state schemes”.24 Once State or Territory bureaucrats had made a decision, there was very little families could do.
However, the mechanisms now available for NDIS participants at a federal level are of little practical or symbolic value if the decisions made in these institutions are not implemented at the level of operational guidelines or practice – the coalface between planners, participants, families and carers.
Decisions made by the AAT and Federal Court should be fully implemented at NDIS operational and practice level, led by NDIA. This will reduce the incidence of appeals over matters which the AAT has considered.
24 Productivity Commission 2011, Disability Care and Support, Report no. 54, volume 1, Canberra, p. 648.
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Circumstances in which plans could be automatically rolled-over and in which longer plans could be introduced
Carers Victoria supports ceasing automatic 12-month review dates for all participants as this consumes a large amount of planner resources which could be better targeted. Plans can be automatically rolled over (with pricing adjustment as necessary) in stable situations where only minimal change is predicted. Plans could run for several years with only minor changes at each iteration.
Triggers for plan review in these circumstances would include important life course events such as: A participant moving from ECEI upon turning 7 years of age A participant turning 18 years of age A participant turning 65 years of age
Other life transition events for participants, their families and carers are best captured by a Change in Circumstances review including: Changes in health status Changes in relationship status Change in employment status Changes in living arrangements
These changes of circumstance may be for either the participant or their carer. This would help address concerns of families about securing a plan which is flexible enough to cater to both predictable and unpredictable life events. Ceasing 12-month reviews would free up planner resources to provide timelier, person centred and family focused responses to reviews initiated by the participant or their nominee.
The Change of Circumstances form is lengthy, repeats information already held by the NDIA and cannot be submitted online. Streamlining the form and enabling completion over the phone via the contact centre is required.
The provision of extended plans would also make service provider recruitment easier as there would be more security in employment, which is particularly relevant for regional and remote areas.
Adequacy of the planning process for rural and regional participants
Regional carers have reported difficulty accessing information sessions and planners. Where appropriate, teleconferencing can assist, but not all people have technology access or can use it.
Remote areas can have extended lead times to get a plan and attract suitable staff. With the consent of participants, longer plans will minimise the administrative costs and increase the likelihood of finding appropriate service providers.
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By having either LAC or NDIA staff co-located at rural and regional Centrelink offices, participants and carers would be able to develop relationships with staff and be able to have the information explained to them.
Other related matters
Community awareness and education
Given the NDIS is a relatively new system which is changing and evolving, many people have little idea how it works or what is involved. Carers require support to become educated about the NDIS and how it will affect both them and the participant. Many carers are parents who have spent years supporting their now adult children. The NDIS is a major change and while it is overwhelmingly positive, it requires adjustment from all parties. Well supported, educated and involved carers will overwhelmingly help participants achieve their goals.
Health professionals also need support to access NDIS education. Some write generalised comments which do nothing to assist the participant. Some also unrealistically write positively about participant capabilities. While on a good day a participant may be able to self-care, this may not be the norm and may therefore miss out on capacity building supports in their plan.
Conclusion
Carers Victoria welcomes the opportunity to contribute to the Committee’s inquiry and can provide further material addressing the terms of reference and other matters as required.
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