Complete Our Caring Network
When we have an injury or impairment, we want to know we will get the care and support we need. Whether we experience an illness, accident or trauma we all want to be treated with dignity. We want to be supported to have the best life we can.
We want to know that those we love will be supported to continue to work, teach, communicate, care for others, find happiness and thrive in our communities.
A sustainable system
We need support from people in government so we can improve the quality of life for New Zealanders in the long term and improve the situation for people who currently feel trapped and hurt by the system. To do this we need a caring and inclusive disability system designed to serve all people, regardless of impairment. A system shaped around our people and our future wellbeing.
Right now this isn’t the case for everyone in New Zealand. Our loved ones get different levels of care and support depending on how their impairments were caused. We have different systems: ACC and everything else, which lead to very different outcomes for our people. This is not fair, and it’s not how it was intended to work. Right now we have a chance to change that, to bring the original idea to life and build a fairer system that we can all depend on.
So how did we get here?
The system we have is incomplete and it is causing harm
It works for some people, but not for others. People receive different standards of care. This includes different treatment, rehabilitation and income support based on how they got their injury or impairment. Families are expected to pick up what people in government choose not to provide. This was not how our system was supposed to work.
In New Zealand in 1967, the Royal Commission suggested a ground-breaking approach: a social insurance scheme to care for people with impairment. No matter how someone got an impairment, how old they were or whether they were working, they would receive ongoing care and support from a single system.
Until now, people in government have chosen not to follow this plan. Over the years our leaders have chosen a two-tiered system. High quality care and support is available to people who experience impairment and disability through an accident. Others are left to struggle in systems not set up for their needs.
Our system is like a city with an unfinished transport network. In this city, people in some parts of the network can’t go where they need to. There are no footpaths, roads, taxis, bus routes or cycle lanes, for them and bus routes or roads weren’t built near their homes. Others have infrastructure built to their front door and any vehicle they need. It means some people can get to where they want, while others, for reasons out of their control, are stuck. They cannot travel anywhere at all.
Our unfinished network impacts people and families
Too many people are dealing with a substandard, unkind, even harmful system. This experience comes because their impairment was present at birth, caused by cancer or depression, or their claim with ACC was declined. It does not make sense to separate these systems. This unfinished network pushes people into stressful experiences between various systems that can harm them. We can change this network. We can maximise health for all people. We can minimise the stressful experiences coming from our incomplete and fragmented support system.
Case Study 1 - James
James had a motorbike accident at 28. He lost his right leg above the knee and cannot use a prosthetic limb. He uses a wheelchair. He also lost his spleen which makes him prone to infections, and has a brain injury which makes it difficult for him to concentrate for long periods of time. James was an engineer before his accident. He couldn’t safely continue this work.
ACC supported changes to James’ house. He receives income support that covers the mortgage. This continues indefinitely until he can return to work after his retraining (which is also funded by ACC). James received a large payment in compensation for his impairment. He used it to travel overseas on holiday for two months with his girlfriend. After all, they had been through some stressful times.
Any time James needs to access healthcare, he simply phones his case manager. It is paid for by ACC using the private healthcare system.
Case Study 2 - Sam
Sam was born with a disability. She requires full-time care. Doctors and lawyers disagree about whether the hospital contributed to Sam’s impairments. It has taken six years and the dispute about whether people in Government should provide support has still not been resolved. In the meantime, without access to support Sam’s family had to provide the support. Sam’s mother quit her job to ensure she could care for her young daughter. She receives no recognition for the work she does to care for Sam. The government decided it does not need to help parents because it is “natural” that parents care for their children.
Sam’s parents were saving for a house, but they used all their savings to cover the costs required to keep Sam well. They have run out of money. Sam’s situation won’t improve and her parents are only getting older.
Sam’s mother is dedicated to her daughter. She became very unwell, and experiences psychosocial disability herself. She finds dealing with a complex system very stressful and almost a full-time job itself. Sam’s father took on another job to try and cover Sam and her Mum’s support costs. He is always tired. This affects him at work and at home.
The family went from financial security to poverty. Supporting Sam can be difficult, but dealing with the system makes things worse. It’s stressful, and Sam’s parents have struggled with their relationship. They just need a break. Her parents know about experiences and treatments that Sam could have had. She has missed out even though these could have improved her quality of life.
Case Study 3 - Jill
Jill is a teacher. She became ill in her 30’s, and a diagnosis of breast cancer was initially missed by her doctor. She was eventually diagnosed at 40, treated and is now in remission at age 45. The serious side effects of her treatment and of the cancer means she is no longer able to work. She is vulnerable to infections. Jill lived alone and had no other family to help care for her or support her financially. She was forced to sell her house as she could not afford the mortgage payments. Her rate of income support is similar to the unemployment benefit. She is now forced to move between damp rental properties, vulnerable to infections and illness, and unable to do the best to care for her health.
Jill is in and out of hospital all the time. She experiences significant mental distress at her loss of her career, financial wellbeing and health. If Jill needs help to pay for treatments or rehabilitation, she has to go to various different agencies. Jill’s case has been in Court for five years. People in government have been arguing they should not have to pay for Jill’s care for all this time.
Some case workers at the government agencies show little respect for Jill, treating her as if she is trying to game the different systems for ongoing support. Jill is scared to meet new people socially because her support payments could be reduced if the government decides she is in a new relationship. This just adds to her stress, her lack of support, and loneliness.
What can we learn from these case studies?
We know that impairments can be present from when we are born, or they can appear during our lives when we are injured or ill or have impairments that happen gradually like hearing loss or vision impairment. As we get older, many of us will also develop age-related impairments. If our Government does not have good accessible ways of providing assistance through good systems, then these people will experience disability. Also, the systems we have now cause lots of disputes, for example when ACC decide people have a “pre-existing degenerative condition”.
It doesn’t have to be this way. As New Zealanders, we can decide how we want our system to work and then we can demand that the people in government make the system they way we need it.
It is time to complete the support network and improve people’s lives
We can complete this unfinished system. People in our government created it and it does not have to be this way. A growing group of people across the political spectrum have raised concerns about the issues caused by our current system. We all know somebody dealing with this system. Reviews are happening across New Zealand’s health and social policy systems because people living and working in those systems have called for them. We have a government that has signalled a desire for services that are kinder and fairer, focussed on ensuring our people are healthy and safe, that has our collective wellbeing at its heart.
Now is the time to act. This is an idea whose time has come.
This is our chance to improve the way our society cares. By providing appropriate rehabilitation, income support, and assistance for those with injuries and impairments we can reduce the disability experienced by people in our society. We can make things healthier and safer in our communities. Where appropriate, we can improve prevention efforts and improve the quality of life for people with impairments and the people who care for them.
The evidence and modelling shows that it is possible to build an effective and integrated network. Over the long term, we can have a society that includes everybody, through paid work, caring for others, education and support, creating and experiencing happiness. That is undeniably better for all of us.
People in government have created a system that discriminates. As a result we waste too much time and money on assessments and disputes about what caused an impairment and who should pay for support. People just want to get on with their lives, but the system will not allow this to happen.
We all want to live in a society where people are healthy, safe and part of a community. We want to treat each other with compassion. We want to help each other.
What can you do?
What do we need to do? We need to build agreement. We’ll need government support to build this system. We need the Ministers for ACC (Hon Iain Lees-Galloway), Health (Hon David Clark) and Social Development & Disability (Hon Carmel Sepuloni) and politicians from all parties to take up this matter on behalf of all New Zealanders. Politicians need to know that we care about this. They also need to know your ideas about how to make it work.
By answering the questions below, you can let them know what matters to you. Politicians often do not lead. They listen to the public before they act.
What do you think?
Complete a quick survey so that we know what you think. It will only take a few minutes and the results will be shared with people in government who want to know what the public thinks about this idea.