I’ve done a lot of hunting through the policies of the Parties running in the upcoming New Zealand General Election; trying to find their express views on disability, particularly as they impact on autism families. The difficulty of finding their express views, has surprised and disappointed me. I realise it is a couple of months out from the election – and certain Parties are in turmoil due to changes in leadership for instance – but it should be easier than it has been to figure out (at the very least their existing) views relevant to disability.
So it is noteworthy that United Future is one of the few parties that have made it easy to access these policies. This gives a favourable impression of how much they have considered, and taken seriously, the issues surrounding disability.
There are a number of places in United Future’s policies where they directly address disability concerns, including their Disability Policy, Special Education policy, and Children with Disabilities Policy. I’m going to go through their key points relevant to the autism community.
I’ll begin by pointing out that United Future – much like the Green Party – is concerned about the gap between existing disability policy and actual practice.
I was interested to see that United Future wants to “establish Community-based advocacy services to ensure that every disabled person and their family have a case manager who ensures that clients are given every support they are entitled to and want.” Our family rather accidentally ended up with someone performing this function; a social worker who was proactive in getting various organisations to do what they were meant to be doing for us without the delay and fuss, and who helped to co-ordinate the bewildering number of people and groups we were interacting with. Our family reached the point where we no longer needed his services (and in fact found his a tad too intrusive), but it was valuable to have his expertise, dedication and support in this capacity, and I know many other families have struggled without someone like this in place. I think formalizing such a position for each family, is a worthy idea.
I found it particularly insightful when they said they would “establish advocacy services so that parents have more energy to give to parenting rather than chasing entitlements.” Well said.
In the meantime, in the absence of such helpful advocacy services, United Future wants to streamline applications for assistance to the numerous organisations that frequently interact with families like ours (health, education, income support, etc).
Another great idea proposed by United Future, is “the development of “family governance groups” to oversee life-long care arrangements for individuals with disabilities.” This is an issue that worries families like ours, a lot. It is comforting, to say the least, to see recognition of such concerns. I would be interested to see the details of such a suggestion (I was unable to find those details).
Like the Green Party, United Future is also keen to see a Disability Commission set up.
Considering our own family’s struggles with accessing and then utilising carer hours, I was interested to see their policy state that “more accountability is needed to track where the money from unfilled carer hours goes and is spent.” I have heard (and experienced) some very dodgy tales about the allocation of carer hours, so I’d be keen to see this scrutiny occur. Also related to such service providers, it was good to see the policy state that “the sector needs to be client-driven not provider-driven. Better collaboration between what clients want and what services are available will require a change in funding and contracting. Where possible the client should determine the contract.”
United Future wants to see more acknowledgment and support for the carers of those with disabilities, including the introduction of a “Caregivers Allowance” and making respite care widely available.
Again, like the Green Party, United Future wants to see disability training become a compulsory part of teacher training. They want to increase ORS funding (small error that through-out their policy they use the out-dated acronym of ORRS). They note that ORS is only given to 1% of students, but that 1 in 5 students have disabilities of some sort. United Future wants to see a shuffling of the allocation of funds within the education sector, to address some wide-spread issues of special needs money not going where it is most needed (details are numerous, and can be found here), and wants to “promote an increase of funding for early identification of children with special needs and disabilities with targeted systematic, intensive and high quality interventions.”
In my further research, I have found that United Future is very aware of the disparity between disability care (for people such as those with autism), and care for disability caused by accidents as covered by ACC; that ACC is a very generous scheme but does not extend to those born with their condition, even though their lives may be ultimately affected in the exact same ways as those who arrive at their problems via “accident.” This concern is reflected in their policy: They would like to “establish a health levy (or National Insurance Scheme) to provide a designated fund to address the disparity between trauma-based (ACC) and non-trauma based impairment.”
There are many others aspects of United Future’s policies that will also variously impact on autism families, but I think I’ve managed to capture the main areas. I encourage you to click-through to their main website if you want to investigate further. (They have an unfortunately worded banner up on that main page, that says “Support the Voice of Mainstrean New Zealand”, and I’ve seen commentators attack then for this wording – claiming it isolates and marginalises us non “mainstream” families – but it’s clear from United Future’s own policies that that really is reading too much into the banner’s wording.)
I shall end with my standard disclaimer for these posts:
Please note, I’m not endorsing voting for United Future, and I am not a member of United Future, or indeed any other political party. No one has asked me, or paid me, to write these posts. If I become aware of United Future introducing any major changes to their policy relevant to autism pre the election, I will add it as a dated edit under this paragraph. I welcome feedback from any and all parts of the political spectrum to this and the other Election 2011 posts I shall be doing, which will all be filed under the category “NZ Elections 2011; Autism.”