A Rough Guide to the Disability Sector

Few families new to the world of disability, or even seasoned campaigners, would deny that the sector is challenging to navigate (or even define… more on that below).

That’s why Parent to Parent’s main aim, as a grassroots organisation, is to help families find their way through. One way we do this is through partnerships—connecting families with other families, whānau with organisations, and our organisation with other organisations. As Karen Miles, Parent to Parent’s CE, often says, ‘Making one plus one equal three.’

In a world of limited resources, a cooperative community is a well-trodden path to improving the human experience—necessity truly does breed invention, as we Kiwis know all too well.

With our pan-disability scope, Parent to Parent provides a sector-wide community by collaborating with other disability organisations, including those that are disability-specific or focus on a particular area, such as mental or physical disabilities. Through these relationships, we guide families to potential supports, including bespoke regional services, government funding and non-governmental grants—check out the partnership spotlight below, which highlights one of these NGO grant sources.

What is the disability sector?

While there’s no precise answer, a good place to start is this general definition: New Zealand’s disability sector includes organisations and individuals who work to support people with disabilities and disability-related issues.

In this definition, there is no ringfencing of government-funded services and supports as the ‘disability sector’, although that’s often how the sector is understood. We can further qualify the definition as including government and non-government organisations providing services (e.g., support, education, housing, information, and advocacy) and/or funding to service providers and/or directly to individuals in need (e.g. grants from trusts, scholarships, and other programmes).^[1]

Overview of disability sector resourcing (and why everyone should care about carer contributions)

Most disability sector organisations in NZ are neither non-government nor government-funded but are better described as partially government-funded or partially contracted/subcontracted service providers.

Individuals who support people with disabilities are often family members or volunteers who are, at best, only partially remunerated for the hours they work. In New Zealand, unpaid family carers contribute an estimated $17.6 billion annually to the economy, 5.4% of GDP. This contribution is based on 432,000 unpaid carers in Aotearoa (Census 2018); the actual number of family carers could be up to 50% higher, equivalent to 9.6 unpaid family carers for every professional. Globally, unpaid care work could contribute to 9% of the GDP, which, if compensated, is comparable to $11 trillion. 

“If the government realised how much money we save them, you’d think they’d be kinder to us.” Penny Vincer, Tender, The Imperfect Art of Caring

Disability sector contributions are complex to quantify, not only in terms of who the contributors are and how they are resourced but also how much government support per capita each disabled person receives—a somewhat arbitrary figure given the range of needs (and how ‘support’ or ‘disabled’ might be defined), but an indication of whether government spending or Public Spending on Incapacity (PIS) is growing or shrinking in real terms over time.

However, in OECD countries, a correlation has been shown between higher GDP per capita and public spending on disability-related programmes and supports. While the relationship isn’t perfectly linear, such investment is likely related to the economic situation.

Equally, it has also been estimated that the NZ government loses 540m in tax revenue annually from the lost employment revenue of unpaid carers, which would represent a significant top-up to the disability support services budget for disabled New Zealanders. Therefore, well-targeted initiatives to enable carers to access the paid workforce, or those underemployed to take on more hours, would be an investment rather than a cost, disregarding the knock-on effect on GDP (above and beyond carers being freed up to pursue the work they are trained for, or experienced in). ^[2]

“Not only is care indispensable for the rest of the economy to work, care work in and of itself is an untapped source of employment, which is growing. Investing in care creates jobs. According to the World Economic Forum’s The Future of the Care Economy report, a $1.3 trillion investment in social jobs such as the care economy would result in a $3.1 trillion GDP return and the creation of more than 10 million jobs in the US.” World Economic Forum

To find links to the 2025 budget disability support areas that might affect you, as a carer, CCS Disability Actions’ budget basics 2025 is a great place to start.

CCS Disability Action’s budget analysis 2024/25 was very helpful in interpreting the vast amount of information released last year. If they do a similar analysis this year, we will share it on our communication channels.

NGO partnership spotlight: The Wilson Home Trust

The drive to share networks, resources, and knowledge led to the partnership between Wilson Home Trust (WHT) and Parent to Parent in 2019. WHT occupies a unique position in the sector in providing grants to families of children with physical disabilities (aged 0-22) located in the Upper North Island. While bound by the terms of the trust, which was established nearly 90 years ago, WHT operates outside the ebb and flow of government funding.

As WHT has a small staff in Auckland, the partnership with Parent to Parent enables outreach into the communities where they distribute grants. Parent to Parent’s Regional Coordinators in Northland, Auckland, Coastal Bay of Plenty, Central Lakes and Waikato represent WHT at workshops, events and expos, informing families of the grants and helping them with applications.

Examples of the funding The Wilson Home Trust provides include modifications to vehicles, all-terrain wheelchairs, beach wheelchairs and activities such as Riding for the Disabled and swimming. The young adult grant, which can make a massive difference to youth independence, offers funding towards accommodation for university studies, laptops and iPads.

The Wilson Home Trust offers four grants for physically disabled children and young adults.

• Equipment and Activity
• Young Adults
• Holiday
• Counselling

For more information about the qualifying criteria and grant closing dates, please visit their website at www.wilsonhometrust.org.nz or call Chris on 09 488 0126 / 800 948 787

Measuring the impact of social investment

While WHT has considered using a service such as AC Neilson (now known as NielsenIQ (NIQ)) or Impact Lab to measure the impact of every dollar it gives, like any other disability sector organisation seeking to quantify social investment outcomes rather than outputs, this draws limited (or ringfenced) resources away from delivering to needs.^[3]

There has always been this catch-22; it’s nothing new. That’s another reason why Parent to Parent collaborates with other disability sector and research organisations—to share information, data and initiatives demonstrating both the barriers to and potential of the disability community, and the impact of disability sector initiatives in realising that potential.^[4] To this aim, we would like to encourage our community of family carers to fill out this Carers NZ survey.

Please forward any other initiatives that work towards this aim. We will share them with our extensive network of families. ^[5]

^[1] Non-governmental disability grants in New Zealand include grants from trusts, scholarships, and other programmes, for example:

The Wilson Home Trust
Provides grants of up to $5,750 to support families of children and young people with physical disabilities

Frozen Funds Charitable Trust
Provides grants to organisations that support people with intellectual disabilities

IHC Foundation
The IHC Foundation funds many projects that benefit people with intellectual disability and their families.

Lotto Individuals with Disabilities Grant
Provides grants for communication equipment, such as smartphones and assistance software

For a more comprehensive list of NGO grants, please refer to this article NGO Disability Grants.

^[2] The 2023 Household Disability Survey found that whānau and carers of disabled children face higher barriers to employment when compared with carers of non-disabled children, i.e. They are much more likely to find it hard to find someone to look after their child (42% compared with 24%) and are less likely to have a paid job (65% compared with 79%).

^[3] In the pre-budget announcement of the new $190m Social Investment Fund on 15 May, it was acknowledged that the reporting burden on non-government service providers to government agencies is unduly onerous. We welcome the proposal to streamline reporting mechanisms and the data requested to focus on the targeted outcomes.

^[4] We watch with interest the Social Investment Agency’s proposed leadership role in developing new tools, infrastructure and methods (that both government agencies and the wider social sector can use) to track progress and measure outcomes. We welcome the acknowledgement that community organisations working closest with families may have more granular data, and that it should be a two-way exchange. For example, the SIA’s Regional Data Explorer does not yet include disability information.

^[5] In 2024, 430,000 people engaged with Parent to Parent services in some way, either face-to-face or online.