Advocacy peak recommendations for immediate action

 In the last 12 months, the Disability Royal Commission and the NDIS Review have both handed down their final reports, making a combined total of 248 recommendations and 139 supporting actions. If the NDIS was a Taylor Swift concert, we’d currently be in the break between “eras”.

The disability ecosystem is not working for too many people. Nearly everyone agrees it needs a major upgrade. But where to start? What are the priorities?

The representative body for advocacy services, Disability Advocacy Network Australia (DANA) has complied a Priorities Project. The report outlines priorities for immediate action, which were developed in consultation with people with disability, Disability Representative Organisations (DROs), advocacy organisations and subject matter experts.

At the launch of the Priorities Project report, NDIS Minister Bill Shorten expressed his strong admiration for DANA and the report. Which might mean the government is willing to act on some of these recommendations? Whether this will lead to action, is yet to be seen.

Let’s look at the report in more detail:

Priority 1: Access and Eligibility for NDIS supports

 The issues:

• There are almost no supports available for the 88% people with disability not on the NDIS.
• Some states and territories have supports available, but these are time limited, offer low levels of support and do not let people choose their providers.  
• People face barriers when trying to access the NDIS, including the cost of assessments and the specific language required for specialist reports.
• People with disability often find it difficult to find the information they need, and there is no physical place they can go for resources and information.
• There are no aids and equipment programs outside the NDIS.
• These problems are exacerbated in regional and remote communities. 

Recommendations:

Pilot Community Inclusion Hubs

DANA recommends a 3-year pilot of Community Inclusion Hubs. These would be physical places people with disability and their families can go to for information and resources, connections to services, crisis support and equipment hire. They would also be places disability groups could meet, host activities, and co-work. Community Inclusion Hubs would be funded by the federal government.

An aids and equipment scheme outside the NDIS

DANA also recommends the federal government trial an aids and equipment scheme for people not on the NDIS. The scheme would be similar to the Good, Equipment and Assistive Technology Scheme in the aged care system, but with higher price limits for equipment. They suggest a funding maximum of $5,000 for lower risk or lower cost items, and $15,000 for higher intensity equipment. To implement the program, DANA says the federal government should set up a funding body like JobAccess - the agency that funds disability workplace equipment.

Priority 2: Housing

 Issues:

• The housing crisis that has impacted all Australians, is exacerbated for people with disability.
• There is a shortage of accessible housing across Australia.
• Home and living supports in the NDIS are complex to navigate, with many acronyms at play.
• Only people on the NDIS can access home modifications.

 Recommendations

Trial housing Navigation specialists

Like the NDIS Review, DANA has recommended the development of specialist housing Navigators. The NDIS Review recommended that Navigators eventually replace Support Coordinators, Psychosocial Recovery Coaches and Partners in the Community. Housing Navigators would help people with disability to apply for Supported Independent Living (SIL) and Specialist Disability Accommodation (SDA), as well as finding accessible and affordable mainstream housing.

Establish a home modifications scheme outside the NDIS

DANA recommends creating a national home modifications program for people not on the NDIS. The federal government would administer the program, and modifications would be done by approved providers.

Priority 3: Safeguarding

Issues:

• The current safeguarding system ‘is not working and is not keeping people safe.’
• People with disability do not feel that their complaints are properly dealt with by the NDIS Quality and Safeguards Commission.
• The disability advocacy sector was broadly supportive of the Disability Royal Commission recommendation to close segregated settings, due to the risk they pose to the safety of people with disability. However, they also acknowledged that some people have good experiences under the current system, and these people will be significantly impacted by any changes.
• Desegregation does not guarantee inclusion. Communities need to be made safer and more inclusive for people with disability.
• There is a shortage of programs like Community Visitor Schemes and case management, which help keep people safe.

Recommendations

Piloting specialist case management

Since the rollout of the NDIS, case management has been wound down in the disability sector. DANA recommends trialling a specialist case management program for people navigating multiple systems or with complex support needs. If proven successful, the program could be expanded. DANA recommends separate pilots for an adult and child cohorts. The report says specialist case management could serve as a precursor to the development of a provider of last resort, which was a recommendation of both the NDIS Review and Disability Royal Commission.

Priority 4: Implementing foundational supports

 Issues:

• People in consultations had mixed responses to the NDIS Review’s proposal to implement foundational supports. Some saw it as an opportunity to provide supports to people not on the NDIS. But others also felt there was not enough information on what this would practically look like.
• However, there was broad agreement that the current system is not working and there needs to be change, within a reasonable timeframe.
• To rollout foundational supports, governments need a complete picture of what services currently exist and where the gaps are.
• Despite the value of peer support, it is not well funded under the individualised funding model.

 Recommendations

A citizen science project to establish foundational supports

To implement foundational supports, governments need a clear picture of what’s already available and where the gaps are. Many services have wound down or are about to lose funding. Instead of a government analysis of existing services (which we all know would take forever), DANA proposes funding a citizen science project where the disability community maps out existing services. The project would be coordinated by DANA, with the support of data bodies like the Australian Bureau of Statistics, the Australian Institute of Health and Welfare, the Melbourne Institute and universities.

Peer support program

DANA recommends trialling a peer support program through a two-year grant. The program should include lived experience career and education pathways. DANA suggests leading peer support organisation Community Disability Alliance Hunter (CDAH) be funded to develop a peer work model, curriculum and training.

Community transport services

The priority project identified the need for community transport services for people with disability across Australia. DANA recommends trialling a two-year long community transport service in several locations, including metropolitan, regional and remote areas.

Priority 5: Representation and Inclusion

Issues:

• People with disability should have the opportunity to co-design all changes that affect them.
• When people with disability are consulted, consultations are often not accessible due to lack of inclusion supports, lack of accessible information (like Easy Read documents) or short notice. These problems are exacerbated for people with intellectual disability.
• People who live, go to school or work in closed settings often aren’t consulted directly. This can lead to people with ‘no segregation experience guiding the reform process.’

Recommendation:

Set up a Lived Experience Transition Taskforce

DANA recommends setting up a taskforce of people with lived experience of segregation to advise on the phasing out of closed settings. The taskforce would meet regularly and focus on people with intellectual disability- the cohort most impacted by the changes. DANA recommends peak body for people with intellectual disability, Inclusion Australia be responsible for recruiting, designing the meetings, and providing ongoing support.

Priority 6: Advocacy

Issues:

• Advocacy organisations are unable to meet the demand for their services. They are having to turn people away, knowing they are unlikely to receive the support elsewhere.
• Advocates are ‘picking up the slack of complex and inaccessible systems.’ Including people applying for and navigating the NDIS.

Recommendation:

Invest in advocacy

DANA has previously calculated that an ‘urgent injection’ of $91m is needed to meet the need for advocacy until June 2025. They recommended the Federal Government provide the additional funding necessary until the National Disability Advocacy Program ends in June 2025. Unfortunately, this additional funding was not provided in the most recent Federal Budget. DANA also recommended enshrining advocacy services as a foundational support.

You can read DANA’s full Priorities Project Report here. As someone who reads a lot of reports, this one is well written and concise (government would do well to take note).

We’re still waiting to hear the government’s response to the NDIS Review and Disability Royal Commission. When we hear more, we’ll be sure to let you know.