4.1
The National Disability Insurance Scheme Act 2013 (NDIS Act) in its general principles states:
The role of families, carers and other significant persons in the lives of people with disability is to be acknowledged and respected.
4.2
A large body of evidence provided to the inquiry suggested that plans may be over-relying on informal supports—including family members—to provide assistance to participants. In some instances, this may be inappropriate because a parent is elderly, or a participant has no informal support network. Further, this evidence indicated that the current planning process may not be adequately taking into account the needs of family members supporting participants, or offering them capacity building.
4.3
For example, Leadership Plus provided an example of one participant whose plan suggested that they were able to get up, get dressed and walk the dog independently, without support. However, after Leadership Plus spoke with the participant’s mother, it became clear that the participant’s mother needed to be present to help the participant complete all of these activities. Leadership Plus argued that informal ‘support provided by exhausted family members is too often overlooked in deciding what is “reasonable and necessary”‘.
4.4
Queensland Advocacy Incorporated contended that the NDIA was providing less funding for participants with family members living close by on the assumption that the participant had access to informal support:
There is little consideration that grandparents may not be willing or able to provide that support. If a family has no or very little informal support this is ignored and not addressed within the plan. Informal supports must not be factored into planning as a cost-savings exercise. Instead, informal supporters must be considered as enhancing the participant’s life if well-fortified.
4.5
This chapter provides a brief overview of the issues raised in relation to informal supports in plans as follows:
The NDIA is over-relying on the concept of ‘parental responsibility’.
Some plans are not providing supports so that carers are able to work.
Plans are overly relying on ageing carers.
Plans do not include sufficient support and capacity building for families.
4.6
The chapter then outlines recent government initiatives to improve support for the people in participants’ lives who take caregiving roles, and ends with the committee view and recommendations. The chapter uses the term ‘caregivers’ to mean those providing informal supports to participants, in particular immediate family members living with participants who have high support needs.
Plans over-relying on the concept of parental responsibility
4.7
The National Disability Insurance Scheme (Supports for Participants) Rules 2013 (the Rules) stipulate the following in relation to reasonable family, carer and other support:
In deciding whether funding or provision of the support takes account of what it is reasonable to expect families, carers, informal networks and the community to provide, the CEO is to consider the following matters:
(a)
for a participant who is a child:
(i)
that it is normal for parents to provide substantial care and support for children; and
(ii)
whether, because of the child’s disability, the child’s care needs are substantially greater than those of other children of a similar age; and
(iii)
the extent of any risks to the wellbeing of the participant’s family members or carer or carers; and
(iv)
whether the funding or provision of the support for a family would improve the child’s capacity or future capacity, or would reduce any risk to the child’s wellbeing;
(b)
for other participants:
(i)
the extent of any risks to the wellbeing of the participant arising from the participant’s reliance on the support of family members, carers, informal networks and the community; and
(ii)
the suitability of family members, carers, informal networks and the community to provide the supports that the participant requires, including such factors as:
(A) the age and capacity of the participant’s family members and carers, including the extent to which family and community supports are available to sustain them in their caring role; and
(B) the intensity and type of support that is required and whether it is age and gender appropriate for a particular family member or carer to be providing that care; and
(C) the extent of any risks to the long term wellbeing of any of the family members or carers (for example, a child should not be expected to provide care for their parents, siblings or other relatives or be required to limit their educational opportunities); and
(iii)
the extent to which informal supports contribute to or reduce a participant’s level of independence and other outcomes;
(c)
for all participants—the desirability of supporting and developing the potential contributions of informal supports and networks within their communities.
4.8
Some submitters argued that the NDIA was over-relying on the concept of parental responsibility, without taking into account the extra issues arising from caring for a child with disability, including, in some instances, immense stress. For example, Children and Young People with Disability Australia argued that:
There is a long history of family centred practice in early childhood intervention but families report this is missing from NDIS plans because it is seen as families’ ‘normal parenting’ responsibility. It is reported plans are being developed which fail to recognise the important role families play...
4.9
Roundsquared argued that the NDIA was placing ‘increasing burdens of support on families and other informal supports’, including by reducing core supports to children ‘under 15 years under the guise that such supports are a parental responsibility’. Roundsquared suggested that the NDIA was not respecting or validating ‘the role of the family, carers and other persons who are significant in the life of the participant’. It also suggested planners may be ‘making value judgements’ about how much supports parents should provide to children, particularly older children, ‘without due consideration for the family dynamics or what level of support would be provided by parents/carers to a child of a similar age without a disability’.
4.10
The ultimate impact of poor consideration of the needs of family members and carers, Carers Victoria suggested, is crisis interventions and ‘relinquishment’ of the participant.
4.11
Dr Amy Wilson, the mother of a participant, suggested that a major problem she had experienced in navigating the NDIS was:
…the lack of understanding that disability affects the WHOLE family, not just [the] NDIS participant. In other words, planners need to recognise that while funds are allocated to the person with a disability, they must factor in the needs of the whole family (if the NDIS plan is to work effectively). Carers are people too!! They have a right to participate in paid work, study, socialise, and maintain good physical / mental health. They should not be made to feel like an NDIS implementation tool…
I’ve seen SO many parent-carers with extreme burn out due to years of neglecting their own social, emotional, mental, physical and financial wellbeing. It is not ok to have a scheme that continues to rely on unpaid carers as the primary resource for providing support to NDIS participants – especially for older children, teens and adults.
As a parent you expect to offer intensive care and time to your infant and small child. It is not ‘reasonable’, fair or feasible to expect parents to continue to provide this intensive level of care and time – just because their child has a disability. It is damaging and destructive to the health and wellbeing of the carer, and has been proven to cause long term ill health consequences for many unpaid carers.
4.12
Dr Wilson argued that planners should take into account the needs of unpaid carers into their calculations of ‘reasonable and necessary‘, as currently ‘there is a major over-reliance on “normal parent responsibility”‘. She proposed that planners refer to a guide containing typical activities for a child and how much would be normal parental responsibility if the child did not have a disability.
4.13
The mother of a participant with autism who, along with her husband, had a medical background, noted that she had asked for her son’s plan to be funded for Applied Behaviour Analysis therapy. She reported that the NDIA had rejected this support, and one planner had told her and her husband to provide the Applied Behaviour Analysis therapy themselves:
Families need to be actively and intimately involved in therapy. We generalise the skills our son is learning in therapy across different settings, prepare resources, attend team meetings, learn skills to deal with behavioural challenges, and sensory issues but we do NOT run or oversee his program…We are not therapists and we employ trained therapists who have experience working with children with autism. I feel this expectation is beyond what is reasonable to expect parents to provide. I have another child who I cannot simply ignore in order to provide my son with the intensive therapy he needs. In addition, my husband and I also work…For the NDIA to tell me…that in addition I should be providing the majority of hours of his intensive intervention is not only unreasonable but offensive.
Caregivers being unable to work
4.14
Others reported that because of their caring responsibilities arising because of insufficient supports in plans, carers were unable to work. For example, the sibling of one participant submitted that she had to take a half day off work every week to care for her brother because there ‘were insufficient funds in his plan to provide the safe ratio for his support. This takes a financial toll on my family but I feel I have no choice…’
4.15
Children and Young People with Disability Australia also argued that some planners, in emphasising parental responsibility, were failing to recognise that parents were unable to work because of their care requirements for a child with disability:
The other significant challenge for families with children and young people with disability is being unable to work because of the care requirements. They report that they would like to work, but are unable to...There is little understanding of the higher-level support provided by families to meet their child’s everyday needs. Forcing families to live on low incomes or [in] poverty because they are unable to work will not ultimately assist the child or young person to live a good life.
4.16
The 2019 Review of the NDIS Act led by David Tune AO PSM (Tune Review) also noted evidence indicating that some parents and carers, who would like to work, were unable to because the NDIA considered caring for the participant to be their parental responsibility.
Older caregivers
4.17
The committee was informed that planners may be assuming that older caregivers are able to provide informal supports in situations where this may be inappropriate. The Australian Association of Social Workers suggested that plans were not taking into account the possibility of carer burden or age, submitting that ‘when participants are living with elderly parents, transition and contingency planning are not identified as goals for their plans’.
4.18
The sister of one participant reported that a planner had told her that she needed to prove that her elderly parents could no longer care for their daughter:
One of the Planners I spoke to during this process told me I would have to provide evidence from a GP that my 85yr old mother and my 90yr old father were no longer able to provide the level of informal support they had previously provided to support my sister to live in her own home! I couldn’t believe what I was hearing! The ages of my parents alone should have been adequate evidence that they could no longer provide support to my sister, and they shouldn’t be expected to. It was a very stressful and difficult time for all of us and I couldn’t believe what was happening.
4.19
A plan manager reported to the committee that a plan for a participant with a spinal cord injury, who was paralysed from the chest down, included support from the participant’s parents, despite them being unable to care for him:
Due to impaired hand function, he was unable to attend to his personal care…meal preparation; eating and drinking…changing the bed linen; changing and adjusting clothing; medication management; and general personal needs…All of these tasks are time consuming and require extensive support from a support worker. He was only able to eat one meal per day when the carer was available.
…He had no other support, as his parents are both elderly and have major health concerns including dementia. Despite this, they were identified as his formal support on his plan. Interestingly, his first plan review request I submitted was declined and the reasons given to him over the phone in his own words [were]: ‘They said if a friend had been helping me out recently during the day that had suddenly moved to a different town they would consider it but because my parents’ dementia has been a gradual decline over the last couple of years that there has been no “sudden” or abrupt change of my circumstance over the last few weeks that under some section would not be applicable’.
4.20
The mother of a participant stated that planners regularly ask ‘older carers what plans they have in place for their adult children’. She suggested that instead of asking this question, planners should be asking what the NDIS can do to ‘facilitate any plans you have for your adult children’ to obtain assisted accommodation or gain employment in a social enterprise, or whatever the case may be. She argued that helping ‘families to actualise such plans is more realistic than dumping the whole issue back onto informal supports’.
4.21
Carers Victoria highlighted a lack of succession planning for participants who live at home with ageing carers, for whom accommodation will need to be found urgently once their carers die. It suggested that capacity-building supports for participants decline sharply after the age of 15, indicating ‘a lack of future-oriented planning discussions’.
Respite and short-term accommodation
4.22
The committee also learned that carers may be refused respite when asking for it to be funded in plans because the NDIS used different terminology.
4.23
Carers involved in the initial planning process, Carers NSW argued, had to be ‘creative’ when asking for ‘respite’, a term not used in the NDIS vocabulary:
The transition has been particularly challenging for less articulate carers or carers from [culturally and linguistically diverse] 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…with a respite effect and a tendency to outright refuse requests for respite.
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’.
4.24
Carers Victoria similarly noted that some planners may be displaying ‘negative attitudes towards respite’ because of the view that it is for carers rather than participants, and informing carers that ‘it is not available as a funded support’. It suggested that the impact of limited NDIS funding for short-term accommodation had led to a shortage for facility-based respite. Leadership Plus argued that the ‘request for respite by family carers has been a long and very vocal demand, and is an ongoing concern among carers’ because of lack of funding for respite and limited respite services.
4.25
The mother of one participant outlined the effects of her son’s latest plan not including respite, submitting that this ‘is a vital component of our caring responsibilities. Without respite we are more likely to go into crisis situations and hence rely on more services, ultimately costing more’.
4.26
The mother of another participant highlighted the challenging behaviours—often aggression—that family members can experience from some participants, and the difficulties that this behaviour can pose in the absence of funded supports, noting that her ‘son at almost 18 can also be aggressive and have behavioural outbursts and I do not want to have to continue caring without adequate support’. She went on to submit:
The NDIS seems to naively believe that informal supports in the form of aging parents will continue on and be able to cope… In our case as a couple without a regular break from our son’s ongoing care, we will not survive as a couple or be able to continue his care…Making difficulties for a provider willing to provide overnight respite for such families…shows that some of the NDIS policy staff and actuaries have no idea of what families deal with in real life…If there is no respite what do informal supports do when their own health needs must be factored in?...I cannot see that the NDIS consciously makes a real effort to support carers and other informal supports.
Support and capacity building for families
4.27
Some submitters argued that despite families being involved in every aspect of a child participant’s life, their role and potential for capacity-building may be under-recognised, with limited funding available to support families in their role as carers. The Brotherhood of St Laurence argued that despite the NDIS relying on families providing the majority of care for children in the scheme, plans may often be ‘too narrowly focused on the funded support needs of the individual alone, to the exclusion of what families need to build resilience and continue to support their loved ones’.
4.28
Mr Alan Smith, the CEO of the AEIOU Foundation, noted the importance of plans taking into account the needs of the people supporting participants:
The biggest thing that families are going to face is the social isolation. Being able to participate in the community is critically important. You need to take that planning to the next level to broaden the plan so it goes beyond just the individual in this type of circumstance. Whether that’s possible within the confines of the scheme, I have no idea. But you’re absolutely right; we don’t have a magic bullet for that, but that’s exactly what is needed so that these families can become part of the community...
4.29
Carers NSW stated that the NDIS policy framework recognises the important role of carers in participants’ lives, but argued that the support that they are entitled to receive in their own right from the NDIS ‘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’.
It recommended ‘independent carer assessments where a participant has high informal care needs, to ensure that a plan includes adequate supports ‘to sustain informal caring relationships’. In addition, it proposed that greater consideration be given to the needs of carers ‘to ensure that supports that sustain informal caring arrangements are adequately funded in the participant’s NDIS plan’.
4.30
Carers Victoria suggested that the NDIS planning process include completion of a carer assessment, that planners be directed to obtain and include a carer’s statement in a participant’s plan, and that carers be paid an amount to compensate them for time required where they manage a plan on behalf of a participant.
4.31
Carers Victoria also noted that carers are able to develop their own carer statements, which may include how their role impacts their employment and family relationships and whether they are able to continue caring for the participant in the same way. However, it suggested that planners may not be telling carers that this opportunity is available to them when planners conduct planning meetings.
The Australian Government’s position
4.32
The Tune Review also received evidence suggesting that the NDIA’s ‘operational policies place an overreliance on the informal supports provided by family members’. The Review noted evidence, like this inquiry, that if a family member asked for respite it was ‘denied on the basis [that] the plan is intended to improve the capacity of the person with disability’. However, if the family or carer asked for ‘short-term accommodation’ or additional paid care supports in the home, they would often be granted a request for supports that were essentially the same or similar in effect to respite. The Review noted that the NDIS has not consistently used the word ‘respite’ to refer to supports previously accessible to families and carers through programs pre-dating the NDIS. However, it argued that ‘notwithstanding the word used to describe such supports, improving the capacity of families and carers is critical’ to help them to provide quality care for a participant.
4.33
The Tune Review reported that the NDIA had advised that in 2020, it would update the NDIS price guide and catalogue of supports to include an explicit reference to respite.
4.34
The Tune Review recommended that the NDIS Rules be amended to ensure that planners, when considering what supports are reasonable and necessary for child participants:
(a)
recognise the additional informal supports provided by their families and carers, when compared to children without disability;
(a)
provide families and carers with access to supports in the home and other forms of respite; and
(b)
build the capacity of families and carers to support children with disability in natural settings such as the home and community.
4.35
The Australian Government supported this recommendation, stating that it ‘supports clarifying that the NDIS has an important role to support families and carers’.
4.36
The Council of Australian Governments Disability Reform Council in December 2019 issued a communique stating that it committed all jurisdictions to implementing respite arrangements for children in the care of state and territory child protection agencies by August 2020.
4.37
The NDIS website notes that support ‘loads and other factors such as illness or ageing can place a carer’s wellbeing at risk and compromise their capacity to continue in their caring role’. The NDIA states that it ‘recognises that sustaining these informal supports can often be an integral component of meeting a participant’s needs’.
4.38
The NDIA’s Participant Service Improvement Plan 2020–21 states that it intends to ‘have a NDIS carer connect network for aging parents of people with a disability’.
4.39
The NDIA also informed the committee in October 2020 that plans do consider the role of informal supports, including through a family questionnaire:
The NDIA acknowledges the important role families and carers play in the lives of people with disabilities, including their involvement in planning meetings. National Disability Insurance Scheme Plans respect and take into account the role of family, carers and informal supports. This includes the completion of a family questionnaire to capture the voice of the family or caregiver in the participant’s plan.
Completing the family questionnaire with the family or caregiver assists the NDIA to understand the experience and outcomes of families and caregivers involved in a participant’s life. This helps the NDIA to understand the impact the NDIS is having, not only for participants, but also on their family and/or primary caregiver.
Committee view
4.40
The committee recognises that some participants do not have informal supports, or do not want to rely on informal supports. However, the committee recognises the crucial role that families, caregivers and other informal supports play in the lives of many other participants, including, in some instances, when they may have other caring responsibilities, be carrying their own illnesses, or be elderly. In particular, the committee acknowledges that in some instances, for participants with high needs, the informal support role may involve considerable stress, and some caregivers may be unaware of the supports that may be available, with limited advocacy organisations offering this service. As such, the committee recommends that the NDIA and/or its Partners in the Community provide caregivers (where caregivers are involved in the planning process) with written information before planning meetings about the types of supports that the NDIS can fund to sustain caring arrangements. This information could be sent alongside other general information provided to participants, such as the participant booklets.
4.41
The committee recommends that the National Disability Insurance Agency provide caregivers, where they are involved in the planning process, with written information about the types of supports that the National Disability Insurance Scheme can fund to sustain caring arrangements.
4.42
The committee further notes that the NDIS Price Guide 2020–21 now contains references to respite care, in a welcome step towards the NDIS language being updated so that provision of this support is clearer.
4.43
However, the committee considers that further reform is needed in this area to ensure that those providing informal supports are not subject to burn-out or other ill health effects because of their caregiving role, particularly because participants are more likely to experience better quality of life if they have an active caregiver available to take care of their immediate needs and advocate for them. It is not enough to recognise the importance of informal supports and of sustaining these. The NDIA needs to create a discrete strategy to sustain and maintain informal supports, and to consider ways in which those providing informal supports, particularly families, can be offered capacity-building to improve the ways in which they care for a participant. This strategy should involve broad consultation with caregivers and advocacy groups to inform its content, and take into account the possibility that planners may need to be more proactive in the planning process when considering whether to include funded supports in plans to sustain forms of informal care.
4.44
The committee recommends that the National Disability Insurance Agency develop, publish and implement a strategy to better support people providing informal supports to participants, particularly caregivers and immediate family members.