Enabling Good Lives Sooner Rather Than Later – the annual sector report from the New Zealand Disability Support Network – this week laid bare a funding crisis impacting every level of the sector. It outlined:

– an annual funding shortfall of $574 million 

– an estimated 15,000 additional disabled people missing out on services, and

– services continuing to be rationed as a funding crisis worsens 

Here, Rachel Lodewyk, of Gisborne, says the health system is failing but parent-led trusts are offering solutions in desperate times.

I have a son. His name is Oliver. He is now 17 years old and I have battled against the disability health model his whole life.

Every day I see him struggle, I see him miss out and I see him be less than he could be because too many people sitting in offices are being paid to limit his support services, limit the equipment he needs and limit his access options. They are being paid to limit his life. My son wants to come and go independently from our home, out to the movies with friends, and to school.

I have been waiting for more than 18 months for accessible ramps and modifications to our entrance that will mean he can do this independently of me or someone else. At 17, he still must ask for help every time he comes and goes. The process is painfully slow, each step held up by meaningless information gathering. There was a two-month delay due to the request to know where our bathroom was in relation to exterior ramps on the house. It’s been another three months and I’ve heard nothing further.

The problems I face are similar to those of thousands of parents across the country every day. We are frustrated and every day live with uncertainty – uncertainty about when the help we need, such as new equipment, is coming and fear that our services will be cut, again.

This Labour-led coalition Government promised the wellbeing of all New Zealanders would be at the heart of all their decisions. It’s time they listened to the families who care for their sons and daughters, or any whānau, who face enormous challenges like me. They need to deliver enough funding and a new approach so we don’t have to live with uncertainty and frustrations.

There has been some great work going on in our community. Just this year I’ve seen the start of an intensive wrap-around service to support the needs of children with complex health conditions or terminal illness and their families in the greater Wellington region. It follows the same principles of a service in the Waikato. In Christchurch there is a needs-based provider focusing on mental health and it provides free access to professionals. It also provides fully funded respite for parents, and it covers specialised medical equipment. There is the new and much needed service in Tairawhiti that is providing day school holiday programmes for students with intellectual disabilities and respite care. This ground level, very real support is so very needed by our those in our country who live with a disability or support someone with a disability.

The Lodewyk family

What I would tell a family who face a new diagnosis, or are battling as I do, is to stop looking at the Ministry of Health website, stop expecting support from organisations funded by government contracts, where the statements about what people with disabilities have access to are elusive. I would tell them look to the trusts I mention below, set up by parents, whānau and professionals who at one time experienced the failures of New Zealand’s health and disability service.

Te Hapori Disability Trust, the James Swan Charitable Trust, Smile Dial and True Colours Charitable Trust have all been set up by parents of children with a disability, chronic health condition, or who are parents of a child who passed away.

These are everyday people who have this strength that comes from the love of a child who our health model has treated as less than it should.

The resilience and strength, the love, and the overriding sense of responsibility that no other family should battle for the support their family member needs has led to trusts being set up all around the country. These trusts are the lifesaving, ground level support that is needed. The needs of our most vulnerable are being met by parents who have experienced the frustrations and disappointments of the current disability model. They have risen from weeping in despair on the shower floor to reaching out and saying to others: “I know, and I’m here”.

There is a better way and the success of the parent-driven trusts shows this. I know the Government has many priorities to juggle. I also know that the disability sector is not doing what it is meant to be doing – and the Government needs to play its part in supporting our most vulnerable. It’s time to listen to what people with disabilities need and stop telling them or giving them what people think they need.

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