Should a disabled person have the right to choose where and how they live, and to have the right to an adequate standard of living? Photo / Getty Images
A DIFFERENT LIGHT
There is much anticipation around Finance Minister Robertson's second Budget, and stakeholders are lining up to put pressure on the Government to get their slice of cake.
Doctors and nurses have been on strike. Teachers are organising a mega strike. The mental health sector has had a major review thatwill no doubt call for more resourcing.
The disability sector is anxiously awaiting the Budget to see if there is going to be any additional funding. This sector is reported to be in a funding crisis.
Months ago there were rumours circulating that the disability support services component of the Ministry of Health had blown its budget to the tune of $85 million.
Rumours included that cuts to services were imminent.
Later in April it was confirmed, through Official Information Act documents published by the NZ Herald (April 21), that the disability sector had a $90 million deficit and that the ministry had asked Needs Assessment Service Coordination agencies to propose how they could cut costs.
Suggestions for cost cuts ranged from taking small amounts from a lot of people by reducing their shower time or meal-preparation time, to focussing on individuals with high-value packages of care.
One suggestion was people applying for support for the first time could be good targets because they wouldn't have expectations of what could be available.
Thankfully, the Health Minister and the Minister of Disability Issues, who recognised such measures were intolerable to the disabled community and no doubt potentially politically damaging, have canned these somewhat brutal measures.
Disability services in New Zealand are based on a complex system. It is essentially demand driven.
Individuals have their needs assessed by a Needs Assessment Service Coordination agency (NASC), a package of funding is allocated to them, and a service coordinator implements the support through service providers.
It's discretionary, relying on individuals to make calls about services that affect fundamentals of quality of life.
Anecdotally there are reports of people having their supports removed by stealth; people's hours being reduced when they are reassessed, waiting times getting longer. This is hard to quantify in a system that has so much discretion involved.
The Government has proudly named this year's Budget the Wellbeing Budget. Its name suggests the most vulnerable and marginalised people are going to be looked after.
If you measure "wellbeing" in a society, surely the degree of wellbeing for those on the bottom rung, who need the most support, becomes the baseline.
A Radio NZ story last week on homeless people in Whangārei reported that: "The town's Open Arms Day Centre for the homeless says 'high rents are forcing more people on to the streets as winter approaches - and a number of them have serious disabilities'."
The broadcast quoted Sam Cassidy, the shelter manager, who said: "Some are too immobile or in too much pain to get out of their cars to come in for lunch so we take the food out to them in the carpark."
Somewhat ironically, there is a study being carried out about disabled people's experiences of housing in New Zealand. This work is led by a research team from the Donald Beasley Institute to monitor the United Nations Convention on the Rights of Persons with Disabilities.
This is an international agreement which sets out what the New Zealand Government must do to make sure disabled people have the same rights as everybody else.
This includes a disabled person's right to choose where and how they live, and to have the right to an adequate standard of living. They are calling for participants.
I sent the information about the study to the Open Arms Shelter thinking it would be poignant to capture those stories. I hope these voices will be heard.
If, however, you are living in a car, the last thing on your priorities is probably partaking in research.
One could imagine the researcher asking, "How's your wellbeing?" and the reply - "Well, I'm being!"
*Jonny Wilkinson is chief executive of Tiaho Trust - Disability A Matter of Perception, a Whangārei-based disability advocacy organisation.