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!

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.

System Transformation workshops off to underwhelming start

Two workshops down and not a lot to show for the co-design group behind transforming the disability support system in New Zealand.

Throughout April, the first of several workshops were held in Wellington that saw a small group of disabled people, advocates, and service providers come together to work with Government.

The purpose is to design a new system for supporting disabled people; but about all that’s been achieved so far is discussion on Enabling Good Lives principles and clarifying the meaning of Mainstream First.

Workshops continue in Wellington this week, but the group have already convinced project manager Sacha O’Dea to schedule additional meetings in a bid to get the process complete in time for cabinet’s reading in June. More work will need to be done in between meetings as well.

There was a lack of clarity of the actual scope behind transforming the system, and that was a major cause of anxiety in the first meeting. Finer details were cleared up and the official line from O’Dea to the group is that the scope of transformation is for all specialist disability support services in New Zealand. That adds up to around 33,000 people in total – with no word on the restrictions regarding eligibility criteria.

The second workshop saw clarification over the term ‘Mainstream First’ – a big buzzword behind new approaches to services that enable more choice and control. Here is the decided meaning:

“Everybody experiences full participation and inclusion within their community (people, places, assets, infrastructure and supports) as of right and can choose funded supports to enhance and facilitate this.”

The group is keen on getting into the actual design process – something that hasn’t really happened throughout the first month of the project.

Hard Work & Real Action Needs To Begin Now

There is no doubt that the co-design group faces an immense task over the next eight weeks.

It goes without saying that whatever the future looks like for services, and more importantly the process, a key ingredient needs to be simplicity. One assessment, one host, and a greater level of flexibility to go along with the person as their life journey continues. Don’t do things to, for, or on behalf of the person with a disability, do it with them.

This isn’t a case of creating a “brave new world”, it’s about creating a fair system that does include a much greater level of financial investment. The money side matters just as much as the promise of a better system, one cannot be a given without the other.

While some great minds are present on this group, just how much can be achieved remains the huge question.

In an election year, time is of the absolute essence, and it’s debatable that Minister Nicky Wagner will leave anything to chance when it comes to this so called “system transformation”. Re inventing the wheel isn’t going to happen by June.

There is a risk that this co design group could be just another example of great talk, with positive enthusiasm and quiet cynicism, followed by mediocre action.


Disabled people meet with Ministry’s transformation leader

Disability support services are set to change. Photo: Stuff NZ

Two forums were held last week where Enabling Good Lives (EGL) participants in the Waikato could hear more about the future of the demonstration.

EGL was launched in the Waikato back in 2015 as part of a new model of disability supports that incorporate further choice and control for disabled people and their families.

The wider scope of the impending changes to disability support was also on the agenda at the forums, and Sacha O’Dea from the Ministry of Social Development was present to field questions.

“Everything stays exactly the same in the Waikato and their funding will continue until something else is rolled out”, O’Dea said.

O’Dea will manage a big chunk of the system transformation in her role as Programme Lead of System Transformation.

For the wider system transformation; a co-design group will be formed to come up with what the new system will provide to people with disabilities. Four disabled people and one representative of families will feature on that group amongst representatives from service providers, Government, and other key areas.

“It’s about understanding the population you’re working with and what the outcomes they want are. You’ve also got to look at what levels of funding they receive currently, and then you work out what additional improvements could be made with additional investment”, O’Dea said.

“We need to understand the level of funding currently available. It’s less about what the providers need and more about what individuals need to be able to purchase the right supports”, O’Dea added

Community inclusion and greater education about disability in schools was a key want for some of the participants at the forum. Just how this happens remains a big talking point among many in the disability sector, but O’Dea was adamant that getting disabled people doing more of the normal things in life was a good first step.

“People doing more things in everyday places will help to change attitudes in the community and the system transformation will allow them to have more choice over that”, O’Dea said.

The Waikato demonstration will continue until the wider transformation of the disability sector takes place. For now, decisions will be made by EGL’s Leadership Group in the Waikato will continue discussions about how to improve the services over the next two years.