If System Transformation is to truly aid disabled people toward achieving a better life; the care aspect of support cannot be the overarching factor of the individual support package.
Make no mistake about it, degrees of need vary and different support packages will provide different things for different people in the new system. This variety will be one of the key learnings during what is promised to be a “try, learn, and adjust” approach, but before rollout, and well after, disabled people should be encouraged to approach their new support packages in different ways.
One of those ways could be to look at care requirements and how they are delivered as one of the most basic aspects of the entire setup. Yes, I just simplified it and used the word basic, in a system where even now, getting support provided is anything but.
If we are truly talking about using an approach to support that builds on people’s aspirations and gives them the autonomy to do what they want to do, then surely the delivery of care support (whatever that looks like) sits at the bottom and is one of the basic features toward achieving everything else.
For example, let’s look at someone with a physical disability who may come under “very high needs”. Let’s call this person Johnny.
If Johnny wants to study part-time three days a week in the morning, work two days a week in the afternoon, and hang out with friends and family on the weekends, then having his care needs (shower, dressing, home help etc) has to be in place in the first instance, right? None of the other things will work if the core care aspect is in place first, because Johnny needs to be able to get out of bed at 5.30am – 6.00am in order to make it to his class at 8.00am, Johnny needs transport to get to and from work, and he may choose to have a support person with him during all three of the things mentioned above, even when hanging out with friends and family because he may have additional needs when it comes to feeding etc.
Point being, whatever Johnny needs in order to feel most at ease, he may choose to use a support worker rather than natural supports for some aspects of his needs, so then the support package needs to cater for that.
My idea of this approach is certainly nothing radically revolutionary compared to what has been discussed prior to now. The phrase “whole of life approach” has been used many times in the past when discussing new models of disability support. Enabling Good Lives used it, Individualised Funding providers used it, and most notably, Dr. Mark Bagshaw used it in his brilliant paper discussing support reforms back in 2008.
What’s more, this term has been one of the underlying values behind many of the roundtable discussions amongst sector leaders and advocates in the buildup to DSS System Transformation (due to launch in October) in the MidCentral.
DSS Transformation Focuses More On Disempowerment Of Disabled People
For too long, disabled people and whanau have been disempowered by two factors, community, and system.
Community (both the mainstream and the disability community) expectations, ideologies, and power struggles act as barriers just like the physical access issues in the built environment do. The system equally places barriers in front of disabled people because they can’t get adequate levels of support to be able to do the things they want to do, including in education during their most critical development years.
But there is no use in barking on about the mistakes of the past, or is there?
Dr. Bagshaw wrote that one of the biggest mistakes that have plagued disabled people has not been from a lack of investment or effort, but more so, how that investment and effort has been applied. What Dr. Bagshaw also eluded to in his paper was that a “Whole Of Life” business model that addresses infrastructure barriers, community expectations, and disempowerment was required.
Back in New Zealand and during a time when DSS is about to undergo its biggest transformation in history, the primary focus appears to have been addressing the disempowerment that disabled people face. Perhaps there is room for more work on infrastructure (including Universal Design) in the future, but given that the DSS project is under the scope of the Ministry of Health, the depth of reach is somewhat limited.
The Whole Of Life Approach To Supporting Disabled People
My idea of the “Whole Of Life” approach would see various recourses, including Maslow’s Hierarchy of Needs, fully realized under the new system of disability support. Like anyone else, disabled people’s morality and fulfillment matters, and that needs to be one of the core approaches to support, with less focus on the size of the financial investment.
System Transformation will rollout in the MidCentral region of New Zealand from October 1st.