As the National Disability Insurance Scheme (NDIS) continues its rollout, people with disabilities, their carers and families, and those who work in the sector are on a steep learning curve.

In a post for Croakey last year, Indigenous disability researcher and advocate, Dr John Gilroy, wrote about the need for genuine engagement and accountability in ensuring that indigenous people get fair, equitable and culturally appropriate access and support under the scheme.

Almost a year down the track, along with his colleague at the Centre for Disability Research and Policy at the University of Sydney, Dr Jennifer Smith-Merry, and based on their ongoing research and advocacy work, he writes again in the long-read post below.

The pair conclude that getting the balance right between individualised packages and block funding for communities, supports and services, will be key in developing a scheme that is workable, equitable, and meets people’s needs.

Dr John Gilroy and Dr Jennifer Smith-Merry write:

The National Disability Insurance Scheme (NDIS) is the most significant policy reform for people with a disability since the Disability Services Act 1986 (DSA). The NDIS has proven potential to enable people with disabilities to live good lives.

The National Disability Insurance Agency (NDIA) reports that around 5% of NDIS participants are of Indigenous heritage.

The NDIA has branded the new scheme as a way of expanding individual and family choice in the services and supports people with disabilities can access. As we have noted previously, individual ‘choice’ requires ‘opportunities’ to exist in local communities. The more remote or rural a community the fewer opportunities available. As such, limited ‘opportunities’ in communities lead to limited ‘choice’ for Indigenous people with disability on NDIS plans who live in rural or remote communities.

Services, supports and capacity building

The original inquiry into the NDIS identified the importance of a balance between an individualised support system and the block-funding of services and programs to ensure efficient and effective roll-out of the NDIS. The work that we have been involved in supports this view, arguing that Indigenous people should be able to utilise services at their own pace that meet their cultural and personal needs rather than being pushed through a

government imposed time-frame.

The government has released the policy framework for NDIS Information, Linkages and Capacity Building (ILC), and the subsequent Commissioning Framework. The ILC, formally Tier 2 of the NDIS, provides funding for the development of programs to help connect people with the disability, health and social supports, and services that are appropriate for them. It also supports capacity building for communities, organisations and individuals, that is not tied to a person’s individualised funding package. In doing this, it aims to also offer support for those who are not eligible for individualised funding packages.

Ensuring equal access and resourcing

There is growing concern that services for the most disadvantaged of the population of people with disabilities may become under-resourced or absent in light of the NDIS roll-out. There is much evidence that this disadvantage is heightened by geographic location, such as very remote communities. The ILC has been designed to provide the opportunity for the needs of these groups to be better met, but only if there is a proactive prioritisation of their needs.

Informed by several of our existing research and community projects, below we present some recommendations for the government, regarding the types of block-funded programs and services needed in local Indigenous communities to ensure that they benefit from the NDIS roll-out.

We preface these recommendations with the observation that there is a big problem with the implementation of the ILC, as the funding has been severely curtailed in its first stages. Bruce Bonyhady, former chair of the NDIS, warns that the current funding for community inclusion programs is: “not sufficient and means that one of the key foundations on which the NDIS is being built is weak”. This funding gap needs to be addressed immediately as there will be significant benefit to indigenous communities if the funding targets appropriate areas.

Crisis Intervention Services

Disability services providers have reported that many Indigenous people engage in the formal services system only when the quality or quantity of family and kinship care is depleted. As such, a large proportion of Indigenous people engage in the disability services sector when in a crisis situation.

Crisis services should be made more disability inclusive, and should act as a channel for encouraging the utilisation of appropriate individualised funding package supports. Targeted capacity building programs are also needed, to enable families and kinship groups to provide support. Such programs should be individualised and culturally and contextually appropriate. Block-funded models enable organisations that have established rapport with communities, to deliver such services in a culturally appropriate manner.

Transition support services

While many Indigenous people only engage with services at times of crisis, the impact of the services provided during crises can be sustained as the crisis abates. The most effective way of doing this is by supporting individualised transition support services which help people to re-establish their lives. This could involve connecting people with appropriate individualised support packages or funding of ‘peer support’ or community buddy programs.

Case Management and advocacy services.

Some bureaucrats wrongly use the terms “case management” and “advocacy” synonymously. The major difference between these two service types is that formal advocates are called upon when a person feels that their human rights have been violated. In comparison, case managers are typically called upon to assist people to join up services and supports by navigating the complex bureaucracy of the formal service systems, including health and disability.

It is pivotal to have a balance of these two service types under the NDIS to enable people with disabilities access to supports that foster the protection of their human rights and enable them to navigate the NDIS bureaucracy.

Early Childhood Intervention

There is limited research focused on the needs of Indigenous children with disability. A recent study found that young children with cognitive impairment are at risk of social exclusion, and need interventions to promote inclusion in family and cultural events as they age.

The government has identified early childhood intervention (ECI) as an area for block-funding investment, in recognition that the market-based principles of the NDIS could not work for this service type. ILC block funding can be used for early intervention and allows novel or creative community-based solutions to develop. This will allow the development of services which may meet local needs but are not ‘standard’ service types. Evidence-based practice is great if the evidence is there, but it should not be a straight-jacket, limiting what is possible.

Localised, community-based services

Research shows that Aboriginal community controlled organisations are an essential component of addressing the health and social needs of Indigenous communities. In a recent review of existing community-based mental health services, Jen Smith-Merry found that the services offered for Indigenous people were most successful when developed by local communities or ‘localised’ and adapted carefully (and genuinely) to community needs.

John Gilroy’s research shows the important role of Indigenous community controlled organisations in forming relationships and referral pathways to disability services. These organisations function as the “social glue” between Indigenous communities, and disability and community organisations.

Workforce Training and Development

The efficiency and effectiveness of the NDIS requires a healthy, vibrant workforce. There are many reports examining what the disability services workforce looks like. However, the roll out of the NDIS will completely reshape the workforce.

National Disability Services are managing a workforce development fund to explore ways to build a workforce that can sustain the NDIS. NDS will need to explore ways to build the number and proportion of Indigenous people working in the sector and also explore successful ways to build a workforce that is culturally competent in supporting Indigenous people and their families.

The CEO of First Peoples Disability Network, Damian Griffis, told ABC Lateline in 2015 that Indigenous people are already working as informal disability workers, stating “There are a lot of Indigenous people that by any other definition would be called support workers today, but they need to be valued and respected for that work and they are already in existence.”

Research shows that over 10% of Indigenous people have provided unpaid assistance to a person with a disability. Agencies could pilot approaches to recruit and train family members that balance people’s human rights with individual duty-of-care in the context of the NDIS.

Translation and Interpreter Services

There are many regions of Australia where the English is a second or third language. Notwithstanding that, there are many Indigenous peoples who require hearing or communication supports. Interpreter and translation services are under-resourced and in high need across the country. It would be discriminatory for NDIS users to have to use their packages to access these service types as this would deplete the funding available for other services in comparison with other NDIS participants. These services should instead be funded at a community level either through the ILC or a specialised program.

Foster Social and Cultural Capital Building

There exists plethora of research showing the important role played by Indigenous community controlled organisations in the health and community services sector. Such organisations provide the opportunities needed to bring together Indigenous people with disability to have their voices heard as a collective. For example, the many NDIS specific gatherings around Australia have brought together Indigenous people with disability to share their stories and experiences. This knowledge should be valued and harnessed. One way that this could take place is through ILC funding of community-based peer-support programs.

The roll out of the NDIS has enabled Indigenous community controlled organisations and services to continue working in local communities. Such organisations and services are being supported to provide services and supports under the NDIS in NSW. Block-funding will enable Aboriginal community controlled organisations to continue their role in representing their communities whilst supporting NDIS participants.

Interagency Networks and Engagement

Jen Smith-Merry’s Research to Action Guide produced for the Centre for Applied Disability Research showed that interagency forums do help with linking across organisations and sectors, but that this is most effective when it happens organically and collaboratively rather than being mandated. Through sharing stories and good practice, interagency forums help disparate actors to understand the different practices and knowledges operating in sectors outside of their own.

There is evidence of a conflict at the interface of the formal service system and Indigenous communities in how disability is defined and conceptualised. A recent report concluded that many Indigenous people find the definition of disability to be stigmatising. Rather than trying to ascertain how Indigenous peoples define disability, the focus of scholarly exploration should be on ways to bridge the cultural interface in how disability is defined and embodied as a social construct.

Great work has been undertaken by National Disability Services, to foster relationship building between the disability services sector and local Indigenous programs, by implementing the principles of interagency commissioning. Sadly, the government did not extend the funding for these networks to continue. This is a significant problem that won’t be immediately fixed by an underfunded ILC.

A healthy balance

The NDIS is a huge win for the disability rights movement. The new scheme provides an opportunity to address the equality and equity gaps between Indigenous and non-Indigenous people with disabilities. However, there needs to be a balance between block-funding and the individualised packages provided by the NDIS, so that the scheme can meet its full potential. The examples given here provide some ideas for how ILC funding might work, but only dialogue with consumers and communities will point us truly in the right direction.

*Dr John Gilroy is a Koori man from the Yuin Nation, and a doctor of sociology in Indigenous health, specialising in disability studies. He is a Senior Lecturer and Indigenous Stream Lead at the Centre for Disability Research and Policy, University of Sydney

*Associate Professor Jennifer Smith-Merry’s research focuses on the implementation of policy in service settings, and consumer experiences of this. She is Mental Health Stream Lead at the Centre for Disability Research and Policy, The University of Sydney.