Draft Carers' Strategy Action Plan

Tirohanga Whānui | Overview

The New Zealand Council of Christian Social Services (NZCCSS) welcomes the opportunity to provide feedback on the Draft Carers’ Strategy Action Plan. These comments are in support of the online consultation with our members that occurred on March 3rd.

Taunakitanga | Recommendations

We raise the following points and recommendations for consideration:

Item One: Rolling Action Plan

Members have expressed that the idea of a rolling action plan has both positives and negatives. They acknowledged that often incomplete items from one plan are rolled over into the next plan anyway, and that three-to-five year periods are difficult to gain true change. The adjustment to short and long term priorities gave members some hope that there could be quick wins coupled with sustainable change, and the opportunity to rebalance priorities based on feedback. Members reflect that regular consultation and engagement with people and populations affected by the plan will be integral to ensure that the lack of ‘deadline’ on the plan doesn’t translate to a lack of priority on the actions contained in it.

Recommendation: We recommend that Section 4 of the Plan: Data & Information be amended to include a third action focused on regular (2-3 yearly) engagement and consultation with those the plan impacts.

Item Two: Priority Areas

Members agreed that these were reasonable and relevant priority areas that were deserving of attention. No alternatives were suggested in replacement. We note that these areas broadly encompass the priority areas identified by carers in the 2021 State of Caring Survey (Heyes & Grimmond, 2022).

Item Three: Recognition and Appreciation

Members reported that their initial reaction to a ‘Carer’s Day’ was that it felt tokenistic and patronising. When the intention (to better help people identify themselves as carers, and therefore better able to identify their eligibility for carer-related supports) was explained, this alleviated some of the concern, but there were questions if this could be communicated in a better way than yet another ‘awareness day’.

Recommendation 1: We recommend further exploration of how the objective of Action 1 – Public awareness and outreach – might be achieved through alternative Immediate Deliverables to that of a National Awareness Day, noting the saturation of awareness days that can lead to cause fatigue. Greater resourcing within frontline community services is one suggested approach that may lead to greater recognition of caring among both those performing care and those who can play a part in connecting carers to available supports.

Members agreed that culturally safe support is critical but questioned how this can be achieved while also navigating the way that ‘care’ is defined across different cultures. Some would not identify themselves as a carer at all, as what they are doing for family is simply expected. While research indicates that Māori and Pacific are more likely to be carers than other populations, government supports remain framed through Western understandings of caring (Heyes & Grimmond, 2022; Lapsley et al., 2019).

Members also identified the issues of key groups being forced to participate and interact with a ‘systemically racist and colonised health and support system’ to receive help. Even if someone did identify as a carer, they may be disincentivised from engaging with support systems because of prior system interactions.

Recommendation 2: We recommend that Action 2 – Culturally safe and relevant services – be amended to reflect that cultural safety may require government to go beyond the proposed Immediate Deliverable of simply integrating te ao Māori considerations into the promotion and delivery of existing services. Consideration must also be given to whether existing services are fit for purpose for Māori, Pacific and other cultural expressions of caring and any additional support needed to overcome barriers that prior system experience may have created among whānau.

More than appreciation, members identified a desire from the carers they interact with for better navigation support to know ‘what needs doing and who to talk to about that’. Funding roles withing community organisations, who already have good engagement with community and have built trust in these communities, to provide navigation services and support them to best deliver the care that their loved one needs would make their lives materially better. This is specifically noted in relation to diagnosis-specific information, including neurodiversity supports and things like diet and medication support.

Recommendation 3: We recommend that Action 3 – Services are accessible and easy to navigate – recognise and increase investment in the role that community organisations and kaimahi play in supporting carers to navigate government supports, alongside frontline government staff.

Item Four: Health and Wellbeing

Members agreed that respite is essential and a core part of supporting carers. They strongly agreed with the need for the creation of a national picture of respite care and break services to identify what already exists in communities and where there are gaps. They emphasised that where there are gaps in service provision, this mapping should also identify the barriers to access being experienced. While the need for respite is well-recognised among members, they suggest that the gaps in available respite and break services are significant and impact on the ability for carers to access this support even when they are aware it is important.

Members were interested in and supportive of innovations in respite care both nationally and internationally, including varied day programmes and interventions. There were concerns about the access to these where it is seen that a different system should be covering the needs, such as a lack of support for children who should be engaging in schooling. If these children cannot be at school due to their condition (such as behaviourally-related school exclusion, or medical appointments, or illnesses), then individualised funding cannot be used during these hours because they ‘should’ be at school. This helps neither the carer nor the person they are caring for.

Concern was expressed for those who have high-support needs children in particular who do not ‘tick all the right boxes’ to receive funding, leaving their carers without support due to technicalities.

There was also some interest around work that may occur delineating ‘care’ from ‘natural supports’. Members were eager to understand when one becomes the other, and at what point a whānau should reasonably expect to receive the support that comes with being a carer.

Members also emphasised the difficulty that families faced in finding safe respite care for their loved ones. Carers are often vulnerable and exhausted, and members reported that some say the effort of determining if an alternative respite carer or programme will be safe for their loved one feels more than the reward of receiving respite care. Again, community organisations play an enormous part in providing this reassurance, but finding respite is still an onerous task for whānau.

Recommendations: We recommend the following amendments to Action 1 – Respite and taking a break from caring and Action 2 – Carers’ needs are considered early and fully:

1. The Immediate Deliverable of National outreach to promote respite and break options be reflective of the findings of the second Immediate Deliverable focused on mapping available respite and break services. The current prioritisation of Immediate Deliverables suggests that national outreach to encourage carers to take up respite will occur prior to or concurrent to mapping the respite and break services that exist. We suggest that promotion occurs from a basis of understanding the availability of supports and a plan to address service gaps, rather than simply driving people towards services that are insufficient resourced to respond to this demand.
2. That the Immediate Deliverables recognise the support needed by whānau who are engaging informal respite care, such as support in determining whether care will be adequately safe or not.
3. That the Immediate Deliverables recognise service gaps and the needs of whānau who require care for tamariki or whānau who do not ‘tick all the boxes’ for funded services.
4. That the Immediate Deliverables clarify the scope of natural vs. funded supports.
5. That the Immediate Deliverables identify and promote innovative approaches to respite and break services.

Item Five: Financial Security

Members recognised that the paid family carers scheme was ‘the right idea, the wrong implementation’, and even though it was and is incredibly difficult for providers to oversee, it is the right way forward in terms of ensuring that carers are appropriately recognised and renumerated for their work.

Members floated the idea of something similar to maternity leave for those who are caring for a dying loved one, in terms of legal protections to hold their role for a certain period of time to assist with their long-term security and support after their period of caring comes to an end.

Recommendation: We recommend that Action 2 – Carers’ needs are considered early and fully include consideration of how a maternity leave model might be applied to those in caring roles.

Item Six: Reviewing the Plan

Members were supportive of the proposed Actions and Immediate Deliverables noting that a learning and impact model of regular review is a useful approach to ensure that the plan is having the right effect on the right people.
Recommendation: We recommend:

1. That Action 1 – Monitoring and reporting include the adoption of a learning and impact approach of regular review, incorporating regular consultation as noted in Item 1 above.
2. That Action 2 – Improved data collection consider a focus on the following populations and issues:
   • the siblings of disabled children,
   • young carers and their lack of self-identification as carers,
   • the life-course and earlier instances of later-life conditions such as dementia,
   • and the lack of Enduring Power of Attorney and Advanced Care Planning uptake that protects carers from family disputes as they execute the wishes of a loved one

Item seven: Definition of carers and agency support for non-statutory carers of tamariki and rangatahi

Research indicates that non-statutory carers of tamariki and rangatahi experience isolation and exclusion from those supports available to statutory carers (Caring Families Aotearoa, 2026; Family for Every Child, 2025). Kinship carers may not identify themselves as carers, face inequities in access to supports, may experience disproportionate rates of financial hardship and may be caring for children who have complex support needs (Family for Every Child, 2025). We refer to the submission led by Family for Every Child which describes the challenges faced by this population in greater detail.
Recommendations:

1. We recommend further exploration of the definition of ‘carers’ in regard to those providing informal, non-statutory kinship and whānau care of tamariki and rangatahi.
2. We also recommend further exploration regarding the absence of agency support for non-statutory carers.

We once again thank the Ministry of Social Development for their support of Carers and for taking the consideration of our members who walk along the care journey alongside them in this important work.

References

Caring Families Aotearoa (2026). Every Carer Counts: Why Carer Support must be Fair and Consistent. https://www.caringfamilies.org.nz/advocacy-submission-for-draft-carers-strategy/

Family for Every Child. (2025). Strengthening Kinship Care in Aotearoa New Zealand. Written by Clark, B. J. F., & Egan-Bitran, M. New Zealand Report-Strengthening-Kinship-Care-in-Aotearoa-New-Zealand-Final.pdf

Heyes, R. & Grimmond, D. (2022). The economic contribution and sacrifices of unpaid family, whānau and aiga carers in New Zealand for Alzheimers NZ, Carers NZ, the Carers Alliance, IHC and the Ministry of Social Development. Infometrics-Economic-Contribution-of-Caregiving-November-2022-FINAL.pdf

Lapsley H, Hayman KJ, Muru-Lanning ML, et al. Caregiving, ethnicity and gender in Māori and non-Māori New Zealanders of advanced age: Findings from LiLACS NZ Kaiāwhina (Love and Support) study. Australas J Ageing. 2020; 39: e1–e8. https://doi.org/10.1111/ajag.12671

Ingoa whakapā | Contact Name

Alicia Sudden ceo@nzccss.org.nz

Melanie Wilson

Rachel Mackay