Disability funding ‘pause’ causes confusion, trauma, and disbelief

By Colleen Brown

This opinion piece first appeared in the NZ Herald.

Our son Travers is 43 years old. He has Down syndrome and is a cherished member of our family. For his whole life we have had to fight for everything he has achieved. We’ve fought for his right to attend his local primary and secondary schools, to get extra physiotherapy, to go to tertiary education, for his flat. We’ve had to explain why he needed particular support, again, and again and again. We are survivors of an, at times, indifferent education and political system. We are intensely proud of Travers and the life he now leads, flatting with his mates near his brother and one sister, only a pyjama ride away from us. I say pyjama ride – because just because he is an adult, we are still watchful, still prepared to leap into action to support him, whatever it takes, whenever he needs us.

You can never rest being the parent of a disabled person, because with each gain we made, we were made to pay. You see, we are expected to be grateful. Be grateful for every drop of support, be grateful for every medical intervention, be grateful for the school principal who enrolled him, be grateful for the politician who understands your needs. The word “gratitude” sticks in my craw. It goes back to the charity model of the poor receiving charity from their betters. It smacks of others telling you how to run your life with the small parcels of support awarded to you. The crumbs under the table. My beautiful son is not seen as “contributing” to this society. He is not seen as an economic unit – so he really doesn’t matter.

This truth was brought home to us with a resounding crash on Monday, March 18, ironically the same week as World Down Syndrome Day. Whaikaha – the Whaikaha – the Ministry of Disabled People of Disabled People – so hard fought-for by the disability community – announced on its Facebook page the changes to how disability support funding can be used. Never before have I seen the outpouring of grief and bewilderment at a ministry announcement. Without any consultation, people’s lives and how they survive them, have been overturned. There is confusion, trauma, and disbelief in the disability world, that this could be happening. But it is. Apparently, the funding is on “pause”, however you interpret that word.

Apparently, according to Minister Penny Simmonds, carers have been getting massages. Minister, I wish I could have had a massage when I had to lift Travers everywhere, while I was pregnant with our third child. He didn’t walk until he was nearly 3. I applaud those carers who had enough insight to look after themselves. Apparently, our children are okay about going to strange places for respite care, instead of having trusted whānau travel to stay with them, while we might have a night away from home and get some sleep. This isn’t about having a good night out, let me tell you. This is about survival. Caring for any disabled person is a high-trust position. The highest trust I can give anyone, anyone minister, is to care for my son.

The one thought at the end of every parent’s lips is “what happens to my disabled child when I die?”. An uncomfortable thought. But this is our reality.

We are at this position now because successive governments have not invested into the disability sector. Yes, funds have gone into schools, supports and equipment, but not into the challenging areas of respite care, and housing for disabled people and families. Inconveniently it seems, disabled people are living longer, surviving birth trauma and have outstripped all budgets surrounding them.

But it gets worse. This latest revelation is on top of incremental changes to the calculation of benefits, the review of school lunches, the slashing of public transport subsidiestransport subsidies, and the reintroduction of prescription charges. Note to ministers: not all prescriptions are covered by the Community Services Card and not all families with disabled children have one. We feel targeted.

We in the disability sector have been down this road before. We have faced this repeatedly through successive governments. Sadly, very sadly, I’ve written before about the cost to lives when people despair so much they cannot see any way forward for them and their disabled family member. And so, we lose people. That is the reality we face. Now is the time to contact those you know in the disability community to show you value them. To show you care. To show kindness. To give us hope.

• Colleen Brown is Child Poverty Action Group disability spokesperson and Disability Connect chair.