Costs and income support experiences for Pacific peoples who are disabled or have long-term health condition

Background

This study aimed to understand health- and disability-related costs, ability to meet these costs, and receipt of income support intended to assist with these costs for Pacific peoples who are disabled or have a long-term health condition (hereafter ‘health condition’).

This qualitative study is part of a wider work programme commissioned by the Ministry of Social Development (MSD) to build a better understanding of health- and disability-related costs. Studies were also conducted with Māori and non-Māori, non-Pacific peoples. The findings of these are reported on separately.

In mid-2024, 16 Pacific peoples who are either disabled, have health conditions, or care for someone who is disabled or has health conditions participated in Talanoa (in-depth interviews). Participants ranged from their 20s to 70s in age. They included people identifying as Samoan, Tongan, Tokelauan, Niuean, Papuan, and Cook Island Māori. Eleven were women and five were men. All lived in the Auckland or Wellington regions.

Key strengths of the study are the use of a Pacific research framework (the Tivaivai framework) to guide the research, recruitment of

participants through Pacific community organisations, and the interview team’s experience of Pacific values and cultural understanding.

The main limitation of the study is that it does not represent the full diversity of experiences of disabled Pacific peoples, Pacific peoples with health conditions, and their carers. However, it does provide valuable in-depth insights from those who generously shared their experiences.

Key findings

Most people had direct costs related to being disabled or having a health condition

Direct costs discussed by participants included medical appointments, rehabilitation and therapies, special food, equipment, furniture, clothing, shoes, extra home heating, and transport.

For some participants it was difficult to identify what costs were health- and disability-related, as they didn’t know how much they would be spending if they were not disabled or didn’t have a health condition.

Some people had unmet health and disability related needs due to cost

Some people could not afford the specific diet, regular health care, rehabilitation, or extra help around the house they knew would improve their health or help them manage their conditions or disabilities.

The time, energy, knowledge, and advocacy required to gain access to treatments, funded equipment, and resources was also a barrier to meeting needs.

Suitable housing was a common unmet need. Participants described having to make do in homes without adequate heating or that were not wheelchair accessible.

There were indirect costs of being disabled, having a health condition, or being a carer

Being disabled, having a health condition, or being a carer commonly reduced opportunities to participate in paid employment. For carers, the financial costs of lost income for themselves were balanced by the wellbeing gains for the person they were caring for, who was usually a loved one.

Some disabled people, people with health conditions, and carers experienced costs to their own physical and mental health. For disabled people and people with health conditions these were often related to a loss of independence or feeling like they were a burden on those caring for them. For carers their health was impacted by the stresses and strains of providing care and not having the time and financial resources to take care of themselves. Some had experienced periods of burnout.

High costs and unmet health and disability related needs sometimes led to going without the basics

Health- and disability-related costs put pressure on families’ budgets, sometimes leaving them unable to afford the basics, including food, petrol, and school uniforms.

When asked whether their income was enough to meet their needs, five participants said that their income was ‘only just enough’ and seven ‘not enough’ to meet their needs. Only three said their income was enough and none said they had more than enough income.

People’s context impacted how well they could manage being disabled, having a health condition, or being a carer

Living in suitable housing made a significant difference in the day-to-day lives of some participants, particularly when housing had good heating and was wheelchair accessible. Affordability of housing, being close to family, and living in a neighbourhood that was safe and had a sense of community were important to participants.

Many participants were heavily involved and volunteering with their church and community, which provided sources of connection and support. Faith was a source of strength for many participants. It enabled them to be thankful for what they had and provided a sense of purpose.

People and their families had ways of compensating for health and disability related costs

Care, support, and advocacy provided by family members were key factors that helped people manage, compensate for, and share costs. Family members often helped with daily living expenses and travel, and played key roles in helping secure needed treatment, resources, and equipment.

Other ways of getting by that were mentioned by participants included using foodbanks, shopping second-hand, and using loan companies.

Some participants had support workers to help with care, which reduced the pressure on families. However, costs for support workers could be expensive and it was important to find the ‘right’ carer.

Some people also received support from Pacific health and social service providers, who they felt more comfortable with than non-Pacific providers.

Experiences of accessing income support were mixed.

Some participants were unaware of the different types of income support that could help with the direct costs of disability and health conditions. For example, two participants knew about Disability Allowance but no other potential sources of income support.

In contrast, some people were aware of income support but did not want to access it due to finding the process difficult in the past.

Those who were receiving income support were appreciative of the support they received, though some felt there could be inconsistencies in how this was provided.

Participants expressed some frustrations with income support policy settings that affected their eligibility for support and/or their ability to participate in paid employment.

Implications

The study was small, and findings are based on the experiences of the 16 Pacific peoples who took part in this study. However, the findings highlight a number of areas for further exploration to improve outcomes for disabled people, people with health conditions, and their carers. These areas include:

increasing awareness of the range of supports available and how to access these
reviewing eligibility criteria for some income supports
supporting disabled Pacific peoples, those with health conditions, and their carers into suitable employment
making it easier for Pacific disabled people, people with health conditions and their carers to navigate the system of available supports
increasing the availability of Pacific providers in the community.