Disabled people need to be able to participate in decision-making that affects their lives

Most people want the same things. To be part of a community, to be included and to be able to participate. Most want to make decisions for themselves and, if necessary, to be supported to make those decisions. These are human rights.

Disabled people are no different, and the United Nations Convention on the Rights of Persons with Disabilities serves as a reminder that disabled people are entitled to the same rights as non-disabled people.

Recently, several changes have affected, or are about to affect, the lives of disabled people and tāngata whaikaha Māori. I am highly concerned the impact will be a deterioration of rights – which is against both the Disability Rights Convention and Te Tiriti o Waitangi – and will claw back the recent gains that disabled people and tāngata whaikaha Māori have fought so hard for over many decades.

Tangata Whenua are likely to feel a greater impact as a higher proportion are disabled. While 24% of all New Zealanders identify as disabled, this rises steeply to 32% for Māori – an effect of colonisation.

The Disability Rights Convention talks about the obligation of States to closely consult with, and actively involve, disabled people in developing and implementing legislation and policies that affect them.

Disabled people and tāngata whaikaha Māori are practiced and creative problem solvers. In a disabling world, that is essential. So, the people who face barriers to having a good life are best placed to drive how those barriers can be reduced or removed.

Whaikaha - Ministry of Disabled People recently received negative headlines when, in its effort to forestall a budget blow out, it abruptly announced a “pause” on the flexibility in how disabled people could spend entitlements for support, carers and equipment.

The lack of consultation with affected communities prior to the announcement flies in the face of Whaikaha’s previous undertakings and the right to participate. It has eroded disabled people’s trust that their rights are at the forefront of decision-making.

Inaccessible systems, still don’t adequately uphold our rights, and have created many of the barriers that disabled people have to daily navigate.

New Minister for Disability Issues Louise Upston has announced a review to investigate what can be done to strengthen the long-term sustainability of the Ministry and the support services it offers.

As the Minister looks not only at Whaikaha, but across how it interacts with different government systems, engaging closely with disabled people will be critical. Being able to have a say about our lives and to enjoy a decent standard of living runs broader than the responsibilities of Whaikaha.

The recent changes come on top of lifetimes of systemic neglect, underfunding of disability support in many areas, and the misunderstanding and lack of realisation of the rights of disabled people. They have reignited fears about the impact of careless policy on the lives of disabled people.

For example, cuts to the Ministry of Education propose the loss of some roles supporting disabled students and students with learning needs. Any losses in these roles could exacerbate already inequitable access and outcomes for disabled learners. The impact will be disproportionately negative.

Education is essential for the development of human potential, enjoyment of the full range of human rights, and respect for the rights of others.

The latest Child Poverty statistics for disabled children, and children in households with a least one disabled adult, show that one in five (22.3%) are living in material hardship. I fear reported job cuts at Oranga Tamariki including specialist Māori roles will create further hardship for tamariki who will, again, be disproportionately affected.

Aotearoa New Zealand was instrumental in developing the Disability Rights Convention and agreed to continuously improve living conditions for disabled people. As a country we like to think of ourselves as human rights champions, yet our commitments to disabled people are far from fulfilled.

The current situation brought disabled people, carers, and whānau together to highlight the gaps and challenges in the system. Disabled people’s rights must be at the centre of conversations, and every impacted needs to be included.

I look forward to living in – and contributing to – a country that is actively progressing the rights of disabled people so we, our whānau, and our carers live good, dignified lives.