By Emily Tilley *
Opinion - Last week the final report of the Health and Disability System Review report came out. Despite the title, and purpose, there were no disabled people on the Expert Panel.
Because there were no disabled experts on the panel for the Health and Disability Review, now the whole community is once again trying to respond to something that they should have been involved in from the beginning.
It's obvious from the report that this review has had a complete lack of understanding of the relationship between disability support and the health system.
A casual reader - or, let's be honest, a government official - would come away from it feeling the purpose of disability support is to improve the health outcomes (and possibly is the only way to improve the health outcomes) of disabled people. But it's not.
Disability support is about improving the life outcomes of disabled people, including access to education, employment and participation in the community. Sure, adequate support will affect health outcomes too, just as we all know adequate housing affects health outcomes, but that doesn't mean that the Ministry of Health is also responsible for the housing portfolio.
Which is a big part of the problem: agency responsibility. Under our current system disabled people are having to go to a number of different agencies and advocate at each one to have their various needs met - the Ministry of Education, Ministry of Health, Ministry of Social Development - and get passed from pillar to post.
Anyone who has ever complained about their 'life admin' - you should see what disabled people and their whānau go through. The whole system is an inefficient, incomprehensible, ineffective mess.
Some people have the ability and stamina to navigate the mess and keep going, but others don't; they give up on getting support, and they give up on their life outcomes. And that is a hidden national shame - that we have people who are not supported and who have given up.
The Health and Disability Review tinkering with the support system? That's a joke - except it's not funny, because it's letting down some of the most excluded, neglected and isolated people in our society.
Disabled people have put years of effort and expertise into advocating for and then designing a new disability support system. Trials of a transformed system, 'Enabling Good Lives', have been running for eight years now in Waikato, Christchurch and the MidCentral area.
The trials have shown that support can be completely different for disabled people. For people who had given up but are now actually living good lives it is life changing.
Yet the hard work, expertise, insight and specific recommendations of the disabled people, families and providers who have been successfully working together to explore what change needs to be made in the disability system, are not reflected in the Health and Disability System Review report. Disabled people's lives are not reflected in the report.
In the meantime, we have a system review that seems to believe disability support improves the health outcomes of disabled people, while failing to consider - let alone address - the removal of access barriers for disabled people in the health system itself.
Let's take one small example: lots of disabled women are not getting cervical smears because health systems and clinicians see impairments (and not their own systems) as creating difficulties, so disabled women are put in the too-hard basket.
I can't tell you how many disabled women, because we don't have the numbers. We have international stats but not New Zealand stats because there's no focus on collecting the health data of disabled people, and no focus on making sure that disabled people are receiving what, for others, is basic health screening.
This health issue can't be solved by tinkering with Disability Support. This needs the health system to address barriers in the health system.
There are massive barriers and huge health issues for many disabled people, not least health issues caused by massive social and economic inequalities.
We need a separate authority to deliver disability support - an authority that will be able to make the changes needed to enable disabled people to live good lives.
And we need a health system that focuses on removing the access barriers that disabled people face to health services.
Because health is health. And disability support is disability support.
* Emily is a non-disabled employee of the Disabled Persons Assembly NZ. Her bosses are disabled, most of her colleagues are disabled, and through DPA she has met a community of some of the coolest, funniest, most hardworking and kind-hearted people. Yet it's also opened her eyes to just how frustrating, soul destroying and broken our disability support system is. Emily believes disabled people's voices should be heard on disability issues, but she also sees the burden on disabled people of constantly having to speak up on behalf of their community. Sometimes you just have to speak up for your friends.