The Whole Of Life Approach To Supporting Disabled People

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.

Disability Advocates Need Not Rely On New Government

As many in the disability community celebrate the biggest change in politics since 2008, disability advocates and service providers alike cannot afford to put all their eggs into one basket… again.

Waiting and relying on the new Labour/NZ First/Greens government to make drastic changes to the disability space (particularly how it’s funded) is the worst thing Service Providers and advocates could do at this point.

When you break it down a little further; there are two sides to this conversation, and there is a certain amount of merit to having every faith in the new government. But, that comes with a potential cost.

Disability needs to be on the political agenda in a much bigger way than ever before. You could argue that with the System Transformation project, the Government is investing more attention and planning into the disability space than a lot would give it credit for. But outside of that System Transformation; not a lot has been happening on the political front as it pertains to disability.

Implementing System Transformation isn’t going to change the status quo either… at least not for those ineligible for DSS supports. That is the cost… putting all the eggs into one basket and having trust that it will benefit the majority of New Zealand’s disabled population (24% and growing). Add into that the growing rates of Maori with disabilities – constantly ranking higher than any other ethnicity in New Zealand.

This cannot be an area of solving that encompasses just one big egg basket. It’s going to take multiple egg baskets.

Investing In Advocacy That Actually Has Meaning & Context

I really feel that there is incredible potential in the advocacy space, but it needs to be done by people with disabilities, and not the establishment that represents them. We’ve been doing that for a long time now, yes it’s been people with disabilities speaking, but usually it’s under the umbrella of an organisation or a certain cause for a pre set agenda.

The narrative on what disability actually means needs to shift to one that tells the actual stories of peoples’ individual situations and stories. Those situations and stories often encompass issues caused by the real barriers in a society that largely still perceives disability to be abnormal, off-putting, and a situation that comes with a cost.

Don’t believe me on the “coming with a cost” statement? Just look at the education and employment space. That’s the ideology that exists.

Disability Advocates Need To Look At Themselves Before New Government

Phrases like “nothing about us without us” and “greater choice and control” is another area where more focus needs to be directed.

Both are very true, and both form a strong basis for what future models (some even currently) are and should be. But what exactly is the power behind these conversations and subsequent decisions? Again it varies, but when we are talking about funding models and support structures, the disabled person must be the one calling the shots on that front. If not, “greater choice and control” is under threat to become just another buzzword.

It sounds a little outlandish – but is the budget really a concern to people requiring support? Perhaps that is a question to be answered in another blog.

DSS System Transformation Co-Design Group aims to keep it simple

After a difficult first few weeks – the co-design group charged with transforming New Zealand’s Disability Support Services is beginning to gather some real momentum.

Two more workshops were held in Wellington, and the latest from the group is positive as synergy and shared visions align.

Past lessons based on research and insights led the group to determine that simplicity and shared visions were key to the design process. With a paper due for cabinet reading by mid June, the group scheduled two days of workshops back-to-back beginning next week where work will continue.

Information delivery and accountability is a key design challenge for the overhaul – but it doesn’t end there.

Another big challenge for the overhaul is how to ensure that people and families have a simpler process. That process includes everything from the initial contact with support providers, to the needs assessments, and crucially, the implementation of support.

Putting the person firmly in the driving seat of this process is one thing, but finding a way of doing it that both works for them, and the new system, is a diverse challenge. Some people may enjoy making all the decisions, whilst others may need assistance, especially with the variety of support styles and organisations currently in the sector.

Some people don’t know what services like Enabling Good Lives, Individualised Funding, and Community Residential Support actually are.

The group acknowledges that whatever happens, support services must fit with the person and their families. Every situation is different – so it’s great that the group agree on that.

One of the arguments that co-design group may also need to take on is service provision – and where that fits moving forward. In New Zealand; there are many different organisations going after Government contracts, all based on providing support to people with disabilities. Some of those organisations continue to struggle financially, and their future remains unknown.

Is this just a part of the challenging sector that continues to undergo change after change?

While positive and full of momentum; the co-design group still find themselves with a lot of challenges ahead. Perhaps the biggest challenge is to make sure that everything is fitted into conversation.

The next meeting is scheduled for May 16th.