The link between poverty and disability is clear – but it’s far from inevitable, and we don’t have to accept it as so, write Access Matters Aotearoa Trust co-chairs Amy Hogan and Rebekah Graham.
In Aotearoa New Zealand today, disabled children are more than twice as likely than non-disabled children to be in low income households. One in five disabled children live in material hardship – a term for difficulty meeting day-to-day living costs. Disabled children are doubly vulnerable to poverty: both as children and adults. Disabled youth are twice as likely to leave school with no formal qualifications, and four times as likely to not be in employment, education or training.
Disabled people and their families tend to be resilient and resourceful. We don’t give up. We are experts at the “number 8 wire” approach of making do and getting on with it. However, over time, with endless delays, indirect and direct costs, and disappointments, individual resilience can fray. Living with dignity and meaningful employment are challenges. Resiliency is not something that can be achieved or sustained alone. It’s a patchwork that needs many elements of support – individual, community and government.
A core challenge is that many people without disability cannot fully comprehend the additional costs associated with disability, or the multiple barriers that people with disability face when accessing support that is available. This double whammy of invisibilisation makes access to support and talking about circumstances more difficult. It also means that non-disabled people can fail to recognise what disabled people are capable of. The experience of poverty is also largely hidden from public view, making it harder to reduce barriers to full participation in everyday life.
Here’s a snapshot of some extra costs – in both money and time – for people with disability:
If you require glasses for your vision, and if your nose/ears/face are “non-standard”, you will require specialist fittings and intervention. Stringent criteria must be met before available subsidies can be accessed.
Poorly fitted clothing can contribute to pressure sores and increased discomfit. Not only do wheelchair users need tailored items for clothing to correctly fit their bodies, but clothing wears more quickly due to wheelchair use.
Extra time is often required to address multiple and complex issues. Experienced paediatric dentists are rare, necessitating expensive appointments or long waitlists.
Food and diet
It is common to experience food sensitivities, aversions, and specialist dietary requirements. Sometimes this means a great deal of trial and error. For example, one family we know of trialled seven different supplement formulas before finding one that was suitable, digestible and tolerated by their child.
Specialist bathroom, bedroom and kitchen supplies
These are necessary for people with different mobility needs. For example, skin deterioration may require using a bidet, or a person may need nonslip mats for plates and cups. The publicly funded equipment is limited and one size does not fit all, leading to a fair amount of trial and error and costs to the user.
Family and community-related needs
For example, the need to hire (more expensive) wheelchair-accessible venues, the need for supplementary oxygen to undertake daily activities, the need to pay for care workers to travel with you, the need to hire a wheelchair van with a hoist, and the need to pay higher costs for travel insurance.
Specialist health appointments
Disability-related specialists are frequently located in metropolitan centres, meaning those who live rurally often have to fly or drive long distances, and pay for accommodation, in order to attend specialist appointments. The current reimbursement rate for parents who do this is 28c/km. For comparison, the Ministry of Health pays their workers 68c/km to do the same, and the current IRD rates are 82c/km. Time off work is not reimbursed.
One parent we know of had to do travel into the city three times in one week to see three different specialists at the same hospital. Many publicly funded specialists have long wait lists, resulting in increased health complications by the time people are seen. The alternative is a private specialist, but the cost is prohibitive.
Care worker support
Carers are sometimes needed in order for disabled people to attend functions, appointments and social events. This requires additional transportation costs, employment costs and logistical planning.
The framing of beneficiaries as a net negative to society also harms disabled people. Not only is financial support for those with disabilities hard to get, information on how to access it is difficult to find and typically requires experience. This can result in parents spending disproportionate amounts of time navigating overly administrative welfare processes and having to prove their child’s disability repeatedly. When applications are submitted, their approval can depend on the opinions of people without direct experience of disability.
Our attitude towards both poverty and disability need to change to one focused on an upward spiral of wellbeing. The poverty-disability link is not inevitable, and we need not accept it as so. Raising awareness of societal attitudes and working to change them is an important step, and so is providing financial support without heavy bureaucratic requirements. Thoughtful, empathetic responses that remove barriers to support are invaluable, as are welcoming and accessible environments.
Ideas for change, starting now
- Commit to eliminating deficit-based language for beneficiaries. Reframe benefits as earned entitlements, rather than the current focus on worthiness and support categories.
- Implement the Welfare Expert Advisory Group’s recommendations on financial support, specifically recommendations #40 and #41. While we applaud the government’s indexing of all benefits to wage growth, this is insufficient to address the significant shortfall in disabled incomes.
- Lift all levels of support provided by Ministry of Health and disability providers to match the levels of support provided by ACC to people with accident-related disability. Raising the baseline income for disabled people and their families can be a start.
- Implement working entitlements fairly for everyone.
- Lobby for the tripling of the child disability allowance and the disability allowance
Amy Hogan is based in Auckland and lives with cerebral palsy (CP). Amy incorporates her day-to-day experience into her work at the Cerebral Palsy Society of New Zealand. She has over 15 years’ experience implementing and overseeing national disability research projects as a researcher, analyst, writer and advocate focusing on health and social justice.
Dr Rebekah Graham is a very tired Pākehā mother of four children, who is passionate about community psychology and loves her work with PVINZ, a national charitable organization that provides support and advocacy for parents and whānau of disabled children. She lives in the Waikato with her family and two very smoochy cats.