Disabled at heart of new funding model
Members of the disability sector with Ministers Carmel Sepuloni and Julie Anne Genter

Disabled at heart of new funding model

September 5, 2018 Heather Douglas

 

A new disability support system, including a new funding model, will be trialled from 1 October in the MidCentral District Health Board (DHB).

The new Enabling Good Lives (EGL) initiative shifts the decision-making power to the disabled person to make choices about what works best for them and includes a personal budget, moving the funding model away from government-contracted services, to allow each disabled person to buy the services they need.

While personal budgets have been around for several years, the key difference with the MidCentral roll-out is that anyone who currently receives funding from the Ministry of Health or Ministry of Social Development will automatically qualify for a personal budget, said Dr Garth Bennie, CEO of the New Zealand Disability Support Network (NZDSN). This personal budget is more flexible than either the individualised funding (IF) scheme (for personal care, household management and respite services) which has been running in Christchurch and the Waikato since 2012, he says, or the enhanced individualised funding (EIF) scheme, offered in the Bay of Plenty, which widens the IF scheme to include other support services not traditionally available. Both IF and EIF support allocations are also managed by individuals, but through a government-contracted host organisation.

The new MidCentral initiative “is about disabled people and their whānau having more options and greater decision making over what supports they need to live the life they want, rather than their lives having to fit around what has been on offer,” explains disability issues minister Carmel Sepuloni.

In the longer term, the new funding model could lead to major changes for government-funded organisations working in the disability sector, says Dr Bennie, noting that communities are looking forward to the coming changes while providers are variously enthusiastic, tentative, nervous and terrified by them.

What it means for low vision patients

“We have a contract with the Ministry of Health to deliver New Zealand vision rehabilitation services… That's not up for challenge at the moment,” says Blind Foundation policy manager Dianne Rogers, but this initiative will still mean the Foundation has to offer the best services it can to what is essentially a new market where people get to choose the services they need. It is a big challenge, she concedes. “But we’re up for it.”

The changes won’t affect everyone, however, she says, just the younger market. “So, we want to make sure that we're agile, we're flexible, we're thinking about what their needs are. We’re looking at our infrastructure and systems, making sure that people will want to engage with them on a one-on-one basis.”

The overseas model

Worldwide, disability support is shifting towards self-determination and community involvement for people with disabilities. An optional protocol was adopted on this at the 2006 United Nations Convention on the Rights of Persons with Disabilities, while a study¹ predating this and looking at three initiatives in Australia, Canada and the US found that an individualised funding approach, shifting power from the supply side to the demand side, can have a positive effect, “giving genuine options to consumers and breaking-up service monopolies.” Depending on the context and policy, this either led to privatisation, as it did in Alberta, Canada, or enhanced the non-profit sector, as it did in Western Australia,” concluded the study’s authors.

Across the Tasman, disability support providers have faced a shake-up with the introduction of Australia’s National Disability Insurance Scheme (NDIS), which is being rolled out nationwide over three years (2016-9). Although there are significant differences, it, too, aims to give people with disability better access to personalised support services. Vision Australia NDIS programme manager Scott Jacobs says the shift has been exceptionally positive, but warns the change can be challenging for support organisations.

“The NDIS funds more services, to more people, in the blindness and low vision community than ever before. This marks a big shift in how people can achieve their goals and improve their quality of life. From a purely operational angle, rather than receiving funding in a block upfront from the government to provide services, we now claim for funding on individual services, after having delivered the service. The biggest shift has been changing the relationship dynamic between clients and the organisation.”

Moving to individualised funding, requires providers to consider increased competition for clients, for funding and for a qualified workforce, says Jacobs, and to change their culture and attitude to become more service orientated as choice and power shifts to their clients. “Don’t underestimate the burden of change. Everything from administration and service agreements through to billing and financials will be different, and it requires methodical planning.”

Jason Abrahams, Australasian general manager of Humanware, a manufacturer and supplier of low vision and blindness assistive technologies, agrees the change to NDIS has been hugely disruptive but has resulted in some positives. HumanWare now works with rehabilitation organisations instead of one-on-one with geographically-scattered end users, for example. But NDIS is still a trickle with long turnaround times, he says. “So, we have had to stay focused on core business outside of rehabilitation - education, eye care professionals and direct sales - to ensure we hit our revenue commitments to the organisation. This is difficult because so much work is required to enable the transition within the rehabilitation space. Many clients have also held-off until they learn more about the funding model processes and what they are entitled to. In a world where fast and immediate results are expected for company investment of time and resources, keeping the investors happy when sales are inconsistent due to uncertainty is quite the challenge.”

In hindsight, he says, he would have worked quicker to arm his team, his advocates and his clients with literature to help them with funding submissions. Providing simple ‘Why fund me?’ sheets and website content alongside product and service information would have avoided many lengthy funding refusals.

But with most teething problems now ironed out, overall the change has been positive, he says. “Having more advocates in the sector from occupational therapists, orthoptists, optometrists, optical dispensers, assistive technology specialists, carers, nurses, employment assessors etc. means we are seeing better client meetings, faster turn-arounds and a higher rate of approvals.”

Returning to New Zealand

There would be no overnight avalanche of applications in New Zealand, stressed Dr Bennie. While NZDSN supported the direction of change, questions still needed answering, such as, who’s doing the maths? “We are engaged right now in some very difficult conversations with government around appropriate levels of funding, which has been exacerbated by the recent pay settlement.”

Feedback from disabled people who have had more say in shaping their support has been overwhelmingly positive, however, with most feeling significantly more independent, while many families say they feel their burden has been eased. 25-year-old Toni, who used to rely on her family due to her intellectual disability, shared her story on the Ministry of Health’s website² highlighting her new-found independence and sense of companionship, and how this has benefitted the whole family, especially her decision to employ her support worker, Nikki, who had worked with her previously. “We were so tired before. We could only use Toni’s support for certain things. Now we have this support worker that’s brilliant… for Toni’s benefit and our purposes, EIF is working really well,’ says Toni’s mum, Robyn, and there are many similar stories on the site³.

The MidCentral initiative will be implemented on a ‘try, learn and adjust’ approach in the first year with changes expected following feedback from disabled people using the scheme, their whānau and others in the disability sector. No decisions have been made about expanding the new support system beyond MidCentral region, but ministers will be provided with advice on this in late 2020, said MoH spokesperson Emily Barrett.

References

  1. Disability & Society, Vol. 18, No. 1, 2003, pp. 00–00, JOHN LORD & PEGGY HUTCHISON Brock University, Department of Recreation and Leisure Studies, 500 Glendale Ave. St. Catharines, ON, Canada L2S 3A1 Email: phutchis@arnie.pec.brocku.ca
  2. www.health.govt.nz/your-health/services-and-support/disability-services/other-peoples-stories/new-model-people-stories/tonis-story
  3. www.health.govt.nz/your-health/services-and-support/disability-services/other-peoples-stories/new-model-people-stories