DSS Transformation: What About Disabled People In Residential Care?

OPINION: Those with high and complex needs requiring 24/7 care may face limited opportunities to move out of residential care when the new DSS begins in the MidCentral from October 1st.

All current DSS users in the MidCentral will be eligible to transition into the new system from October 1st, but comments made by DSS Transformation project lead Sacha O’Dea suggest that there is still a lot of uncertainty surrounding viable options for disabled people living in residential services wanting to live on their own.

Disabled people requiring intensive support are referred to as those with high and complex needs. Typically they require one to one support on a 24/7 basis and can have a variety of different physical and intellectual conditions. Support arrangements of this nature often occur in residential care group homes run by the MoH and predominantly feature three to five live in residents and support staff working shifts. 

This is the demographic of disabled people using DSS that are the most faceless and unheard sub-community within the greater disability rights discussion.

Currently, the personal support budgets of disabled people living in these homes are difficult to track and fully account for because they are thrown together with the budget of all other residents in the home in order to fund both the support and the running of the service.

During the latest Provider Q&A Session live stream last Thursday, a question about the options people living in residential care homes have in the MidCentral after October 1st was fired at O’Dea via the YouTube live chat. 

O’Dea was asked if the MoH had accounted for the personal support budgets of disabled people with high and complex needs that require 24/7 one to one support and what options would be available in the new DSS if a person wanted to move out of a residential care group home.

The response from O’Dea didn’t answer the question as much as raise some concerns about the scope of what might be possible for someone wanting to move out of residential care and live independently despite their high and complex support needs.

“There will always be limits on the funding that is available. We will be working with people to look at what is important to them and what are the ways they can achieve the kind of life they want within the funding that is available”, O’Dea said.

For a person wanting to look at living outside of a group home, O’Dea said that connectors in the MidCentral will work with people to look at different options before she suggested that different group arrangements could be explored.

It is about looking at what the different options are outside of the group setting or looking at other ways you could develop a different type of group setting potentially, but there will always be limits on the funding available”, O’Dea said.

Limited DSS Transformation Funding Will Hinder Disabled People In Residential Services

On the face of it, the answer O’Dea gave is perfectly valid and makes logical sense. 

On average, someone receiving disability support will be funded around $33,000 per year, but for those with high and complex needs, the budget could be well over $100,000 per year at its cheapest. Furthermore, decisions from Cabinet regarding the financial decisions for MidCentral rollout won’t be released for another couple of weeks.

But on the other side of the coin, if what O’Dea says is to be true, then the end scenario for a disabled person living in residential care could change very little to what is the current state of play now. What’s worse, many disabled people living in residential services already argue that they don’t currently get as much one to one support as their budget allocates due to staff shortages coupled with all the other needs of different people living in these homes.

In 2015, I personally visited a home that had seven disabled people living in a five-bedroom home, all of which had high and complex care needs, with just two staff on the floor. What I saw in this home was a situation of people just existing, what I heard was staff workers telling me that they simply couldn’t meet the support needs of each individual due to the demands of the collective, the lack of resources, and the seeming lack of care by the provider running the service. It all resulted in frustration on all sides, carers and residents, and a place of limbo that existed “until further notice”.

The notice, sadly, is still waiting to be given three years later. I often wonder, how does DSS Transformation help the likes of the people living in that house find a more independent setup in their community? The limits on the funding available, as O’Dea put it, indicate that options for people living in homes such as these will be limited.

What we are hearing more and more of during conversations about DSS Transformation is disabled people, finally, being able to have an opportunity to have a support system in place that is based on their choices and builds on their aspirations in life. That is the exact goal, and it may well be the reality of what happens in the MidCentral, but what exactly are the choices that those with high and complex needs will have once all the numbers are crunched and taken out of the direct/indirect support budgets set aside. (totaling $12.658 over two years).

Those in residential care homes should have the opportunity to live completely independently, separate of any group setting arrangement if that is what is most important to them in achieving the kind of life they want to live.

Documents Cited In This Blog:

Provider Q&A Session – https://www.youtube.com/watch?v=rQDdmnTYMh4

Ministers Media Release – http://www.enablinggoodlives.co.nz/system-transformation/transformation-papers/system-transformation-updates/april-2018-press-release/

Cabinet Paper Summary, April 2018 – http://www.enablinggoodlives.co.nz/system-transformation/transformation-papers/system-transformation-updates/summary-of-april-2018-cabinet-paper/ 

The Real Michael Pulman is a blogger, content creator, and public speaker with 26-years lived experience of disability based in Hamilton, New Zealand. Feedback to any of our blogs is welcome!

Making New Zealand A Country With Less Formal Support For Disabled People

Imagine a world where disability supports weren’t categorised and under the control of providers.

There are already examples of disabled people managing their own supports, but even in the cases of Enabling Good Lives or Choice in Community Living (both of which use Individualised Funding), there is still a “middle man” of sorts, and still a lot of regulations on how personal budgets can be used.

Imagine getting away from all that. Imagine giving all the funding to the person from the very get go and allowing them to use it in any way they’d like. Or perhaps even, imagine giving them real freedom to use funding equally between necessary supports and option extras that still aid their good life.

For example, someone with a support budget of $60,000 per year would have that entire amount given up front, rather than monthly payments into a nominated bank account. The person could use this money on anything they’d like, including some of the following:

  • Buying transport to get into the community
  • Paying for tertiary education fees or existing student loans
  • Purchasing electronic equipment that can aid the needs of the individual, both personally and professionally (e.g. a film studio or furniture that is accessible) 
  • Paying for experimental drug treatments that aren’t yet funded by the health system

Of course, they could choose to spend their yearly budget strictly on support needs as well. But they’d have the choice, and the subsequent freedom.

What we are talking about here is a shift from formal ways of support, to throwing the rulebook out the window and actually putting the person fully into control of their own budget and how that is used on a yearly basis.

Even with the new initiatives; disabled people actually have no say on what the final figure of their yearly budget is. Supported self-assessments and NASC’s discuss needs, but in the end, the final decision regarding the figure is made by what the system concludes is an appropriate portion relative to the persons’ needs.

System Transformation will do its part in removing the regulation that’s placed on disabled people requiring support, and will in turn provide a greater level of flexibility that ever before. The rest, however, is going to be changes in attitude and releasing the balance of power. That includes budgets and how they are used.