Inclusive mainstream services coordinated with the NDIS

There is a lack of coordination across systems to support people with disability
There remain significant problems with how the NDIS interacts with specific mainstream service systems
Temporary arrangements put in place during NDIS implementation remain unresolved
The Panel’s vision: More investment in inclusive and accessible mainstream services and new working arrangements to resolve specific NDIS and mainstream interface issues
Recommendation 2: Increase the scale and pace of change in mainstream and community inclusion and accessibility and improve the connection between mainstream services and the NDIS

All Australians rely on mainstream services such as health, education and transport. There are also a range of programs and activities based in the community such as those run by community groups, non-government organisations, sporting clubs, local councils, employers, church groups and charities.

Ensuring people with disability can use the same services and participate in the same activities as everyone else is a fundamental human right. More inclusive and accessible mainstream and community services will not only produce better outcomes for people with disability but can also reduce the need for more specialist supports over time.

The NDIS should operate within an ecosystem of services that work together to ensure people with disability can access the right mix of supports at the right time in a connected and inclusive way.

Progress to make Australia’s mainstream services inclusive and accessible has been slow

Prior to the roll out of the NDIS, all Australian governments had agreed to make their mainstream services more inclusive and accessible. This was set out in the first National Disability Strategy (NDS), which ran from 2010 to 2020.⁴³ However, progress has been slow, with governments prioritising the rollout of individualised supports under the NDIS. People with disability continue to face barriers accessing the supports they need and participating in their community.

Being able to access mainstream services is a human right under the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD).⁴⁴ Australia meets its UNCRPD obligations through, for example, the NDIS, Australia’s Disability Strategy, 2021-2031 (ADS), the Disability Discrimination Act 1992 (DDA), state and territory disability legislation, disability action plans, standards for accessibility, and policy impact assessments.

In spite of good intentions, Australia’s approach to inclusion, including legislation, has not been strong or comprehensive enough to drive change at an acceptable pace or equally for all groups of people with disability. Complaints under the DDA have more than doubled between 2017-18 and 2021-22.⁴⁵ We have heard concerns with how fit-for-purpose and contemporary Australia’s approach is to disability rights, discrimination and inclusion legislation, including the current DDA.⁴⁶

The Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability has also highlighted the need for a stronger and more comprehensive legal framework, including a Disability Rights Act, which would protect and promote the human rights of people with disability and shift the legislative burden away from individuals with disability reporting discrimination.⁴⁷

There is a lack of coordination across systems to support people with disability

The introduction of the NDIS and its often complex interface with many mainstream services has made navigating multiple systems more difficult. Many of the issues raised consistently by people with disability stem from the failure of government agencies to agree on shared responsibilities and working arrangements under the current Applied Principles and Tables of Support to Determine Responsibilities of the NDIS and other service systems (APTOS).⁴⁸

The principles, roles and responsibilities outlined in APTOS have not translated into consistent collaboration on the ground. The underlying structure of APTOS may be part of the problem - it assumes people with disability will be supported by the NDIS or another system. In reality, they need support from both. This leaves people with disability confused about how and where to find and use supports, and in some cases with no access to support at all.

Clear responsibilities and effective coordination between agencies are critical for all people with disability. Mainstream services often have their own eligibility criteria and access requirements, which can be inconsistent and contradictory. In some cases, access to one support can preclude access to another complementary or necessary support, such as access to assistive technology, supports for children with developmental delay, or some supports provided in educational settings.⁴⁹

Without sufficient planning and integration, people with disability can experience not only complexity and inconvenience, but also negative health outcomes and risks to safety and wellbeing.

…instead of using the entry of the NDIS to encourage much needed, more sophisticated program intersection protocols and collaboration opportunities, the APTOS have reinforced program boundaries and the one dimensional, transactional approach of the old disability systems. In doing this, the APTOS have made it more difficult for people using the NDIS concurrently with other programs to get the ‘joined up’ services they need. The APTOS have been neither reviewed nor amended as the scheme has evolved. Rather than a level playing field of program responsibilities, their existence has entrenched the historical divide between programs and ensured program interactions focus on who pays, rather than the needs of the person with disability requiring their concurrent support.

- Young People in Nursing Homes National Alliance ⁵⁰

The risk of negative safety and wellbeing outcomes are exacerbated for First Nations people, particularly for First Nations women. There is inconsistent education, understanding and knowledge of First Nations concepts of disability and care, ways of being and cultural obligations. This inconsistency undermines efforts to improve outcomes for First Nations people with disability, resulting in real harm to Australia's most systemically marginalised population.

Lack of communication between service providers and communities is evident and a huge problem in supporting mob with disability

- First Peoples Disability Network ⁵¹

There remain significant problems with how the NDIS interacts with specific mainstream service systems

When issues occur at specific intersections of the NDIS and mainstream services, this can create confusion and ambiguity for participants. At best this is frustrating and time consuming. At worst it can put the health, wellbeing and safety of people with disability at significant risk. Despite being the subject of repeated calls for change over the last ten years, the problems remain significant. We have heard about challenges that remain unresolved at the interfaces between the NDIS and the transport, child protection, justice, school education, hospitals, aged care and mental health systems.

Transport

Transport is an essential enabling function for people to live connected, productive, and fulfilling lives. Notwithstanding the slow progress to full accessibility in public transport, the NDIS has a vital role in providing transport supports for people that cannot use public transport due to their disability.⁵²

However, the lack of a clear long-term NDIS transport policy and continued reliance on the Australian Government’s Mobility Allowance means the assessment and funding of transport supports is not tailored to participant needs.⁵³ This has led to inconsistent decisions, insufficient funding in plans, inequitable outcomes, and an overreliance on cross-billing arrangements with state and territory taxi subsidy schemes.⁵⁴ Opportunities to potentially leverage community transport networks to better support all people with disability have also been missed.

Child protection

All children have the right to live in a safe family environment. Sadly, children with disability are less likely to have placement stability, are more likely to live in non-home based settings, and are more likely to be at risk of experiencing harm.⁵⁵ We have heard of inconsistencies in service provision between the NDIS and child protection, with children and families caught between the two systems while disputes continued about who should provide support and pay for it.⁵⁶

In addition, poor collaboration between the National Disability Insurance Agency (NDIA) and state and territory agencies means information sharing via the NDIS portal is not consistent, there is duplicative and unintegrated screening and risk assessments, along with inconsistent planning and coordination for complex situations such as when a young person transitions to life after care.⁵⁷

Justice

People with disability, especially those with cognitive and psychosocial disabilities, are overrepresented in the justice system. In 2018, the Australian Institute of Health and Welfare found that 29 per cent of the Australian adult prison population had a disability.⁵⁸ 95 per cent of First Nations people who appear in court charged with criminal offences have an intellectual disability, a cognitive impairment or a mental illness.⁵⁹

We have heard that the contested responsibilities when delivering supports to participants who interact with the justice system means supports can cease or be denied when participants enter custody or remand.⁶⁰ There can also be disagreement between the NDIA and justice systems over whether certain supports are meeting needs arising as a result of a functional impairment or needs arising as a result of offending behaviour.⁶¹ This disagreement is complicated by the fact that the two categories of need have a complex relationship that is difficult to distinguish between,and have been left open to interpretation in the National Disability Insurance Scheme Act 2013 (NDIS Act), NDIS Rules and the APTOS.⁶²

As with the child protection, mental health and hospital interfaces, we have heard of the difficulties arising due to the absence of specialist case management and integrated planning and funding arrangements.⁶³ This is a long standing and critical issue as participants who interact with the justice and youth justice systems often have complex needs that need to be met by multiple state and territory agencies and the NDIA working together.

Early childhood and school education

Slow progress toward inclusion affects all people with disability but has a profound impact on the life trajectory of children and young people. Failing to include children in the early years can set them on what Inclusion Australia described as the ‘polished pathway’ to lifelong segregation.⁶⁴ Inclusion in early childhood education and care is crucial for later outcomes and a strong transition to school. However, participation rates are low for children with disability and developmental concerns and transition to school is often poorly managed.⁶⁵ This can have devastating consequences such as isolation and poor educational outcomes.

The NDIS can exacerbate this exclusion in schools. Its individualised approach often fails to integrate with the classroom experience, and can undermine inclusion for children with disability. This approach also creates perverse incentives whereby some students only receive supports in class if they are a participant, even though schools are provided funding (through disability loadings) for meeting the disability needs of their students.⁶⁶

Families and young people continue to report a lack of support, exclusions and barriers to receiving an inclusive education experience.⁶⁷ We have heard about the high levels of school refusal, home schooling and even no schooling for children with disability, particularly children who are neuro-diverse. This impacts on lifelong outcomes and increases reliance on specialist supports provided through the NDIS.

Hospitals

Despite recent efforts driven by Disability Reform Ministers and the NDIA, including the introduction of Hospital Liaison Officers, we have heard that significant delays when discharging some participants from hospitals remain a problem.⁶⁸ This occurs when participants in hospital inpatient care are medically cleared for discharge but have no safe destination available outside of hospital. As a result, participants must remain in hospital until appropriate supports are available. This comes at a great cost to the participant and the wider health system, leading to worse outcomes for the participant, fewer inpatient beds for other patients, and longer waiting times for ambulances and elective surgeries.

In addition, we have heard about a lack of clear discharge and transition plans, poor communication and information sharing between the NDIA and health systems, inconsistent decision-making and drawn-out NDIA planning procedures with barriers to completing plans (such as waiting on specialist advice and assessments).⁶⁹ As with the mental health system, the effective provision of concurrent supports within hospital settings can be marred by inconsistent understanding of responsibilities and poor working relationships.

There is a need for more step-down facilities, when people with disability leave hospital, because while they are ready to move out of an acute medical setting, they are not ready to move home or their long-term support and living needs may not be clear.

Aged care

As all people age, the likelihood they develop disability or further disability increases, and their support needs may change. However, the NDIS was never meant to replace the aged care system - they were meant to work together.

Under current legislation, when a participant turns 65 they cannot access more intensive aged care supports, such as the 24/7 nursing care offered in residential aged care settings, without giving up their NDIS supports.⁷⁰ As the Royal Commission into Aged Care Quality and Safety noted, there is more funding per person in the NDIS when compared to the aged care system.⁷¹ This means older Australians with disability are not necessarily accessing the services that best meet their needs.

In addition, when the NDIS rolled out, the Disability Support for Older Australians (DSOA) program, now closed to new entrants, was established for some people ineligible for the NDIS due to age. While DSOA is similar to the NDIS, having two systems operating leads to inconsistencies, inefficiency and unfairness. For example, two residents in the same home can have different funding arrangements and their care cannot be effectively coordinated.

Mental health

We know that to provide the best support possible and increase the chances of recovery, sufficient and timely clinical and community services must be provided concurrently with disability supports. However, we have seen that there are too few clinicians and significant waitlists in some areas, and a shortage of community mental health services for people who need more intensive support than general practice services, but less than specialised state and territory mental health services.⁷²

This failure of coordination between the NDIS and the mental health system contributes to poor outcomes being achieved for participants with psychosocial disabilities. The NDIA has also failed to use its significant role in mental health to influence the delivery of mental health services more broadly.

Temporary arrangements put in place during NDIS implementation remain unresolved

During the roll-out of the NDIS, governments put in place temporary arrangements that were meant to be reviewed and resolved once the NDIS was in place. Two arrangements that are still unresolved were raised in our engagements with participants, governments and the sector.⁷³

1) The National Injury Insurance Scheme

For people who suffer catastrophic injuries that result in disability, the Productivity Commission recommended a National Injury Insurance Scheme (NIIS) be established alongside the NDIS.⁷⁴ Of the four originally proposed streams of the NIIS, only the motor vehicle and workplace accident streams were established. This has left significant gaps that push people into the NDIS. Arrangements between the NDIS and existing compensation schemes are also inconsistent, which can result in overlap with the NDIS and create additional stresses and costs.⁷⁵

2) In-kind programs

In-kind programs are disability-related services funded by the NDIS but delivered by state and territory governments. In-kind arrangements are inefficient, and were intended to only be a transitional arrangement. However, delivery of personal care in schools and specialist school transport schemes continue to be on an ‘in-kind’ basis - with states and territories delivering these services on behalf of the NDIS. This ensures service continuity and maintenance of the status-quo while the long-term arrangements are not agreed. However, it has prevented reform and constrained choice and control for participants and their families.

The Panel’s vision: More investment in inclusive and accessible mainstream services and new working arrangements to resolve specific NDIS and mainstream interface issues

Stronger inclusion and accessibility requirements across governments are needed to reduce discrimination and uphold the human rights of people with disability, outlined in the UNCRPD and DDA.

Governments should significantly increase inclusion and accessibility, including through legislation, disability action plans, and service standards. The needs of people with disability should be more genuinely considered as a part of government policy making processes, rather than treated as an afterthought or ignored entirely.

Governments must develop a unified and contemporary approach to disability rights, discrimination and inclusion legislation. This should consider the proposed Disability Rights Act, and ensure that the DDA and state and territory legislation are complementary of one another and achieve meaningful change to the lives of people with disability.

A multilateral schedule under the proposed Disability Intergovernmental Agreement (IGA) should be developed that strengthens and clarifies core principles, provides detail on shared responsibilities and updates and corrects existing individual responsibilities. It will set the foundations for how service systems will work together and be held accountable. It should include how shared planning and funding would work, how performance would be monitored and evaluated, along with feedback loops to update the instruments used to assign responsibilities. The new schedule would replace the APTOS.

Mainstream agencies should have a good relationship with the NDIA relating to the portfolio eg. housing, education, health etc. at a policy level so they can consider joint resources on particular topics... There needs to be less of "This is not mine, it's yours", "No it's not, it's your agencies responsibility not mine" “

– Carer ⁷⁶

Participants who interact with hospitals, correctional facilities, mental health facilities and the child protection system often require dedicated and highly coordinated approaches to ensure they receive the right supports. A new approach to coordination and case management for complex settings should be developed cooperatively between the NDIA and state and territory agencies.

The NDIS and the aged care system should ensure NDIS participants aged over 65 receive the most effective and efficient supports for ageing related needs. By bringing DSOA clients into the NDIS, the proposed approach to 24/7 living supports (see Action 8.1) will be able to operate effectively for all residents in a house. This would ensure equity and dignity for older Australians with disability. The NDIS and the mental health system should ensure NDIS supports are provided concurrently with essential clinical supports for people with severe psychosocial disability. The NDIS and systems involved in child development should ensure children receive appropriate early supports and are included within mainstream and community service settings.

The incomplete NIIS should be built out to include general accidents, aligned with the original vision of the NDIS and NIIS. As originally envisaged, clients of no-fault accident compensation schemes should be supported by those schemes, with no cost shifting to the NDIS. Where personal injuries are covered by fault-based accident compensation schemes, settlements should not be deliberately structured to shift costs onto the NDIS. In-kind arrangements by governments were only intended to be a transitional arrangement and should be phased out once key policy issues are resolved for delivery of personal care in schools and specialist school transport.

Recommendation 2: Increase the scale and pace of change in mainstream and community inclusion and accessibility and improve the connection between mainstream services and the NDIS

* Legislative change required

To increase mainstream and community inclusion and accessibility…

Action 2.1: The Attorney General’s Department, with the Department of Social Services and the states and territories, should develop a unified and contemporary approach to disability rights, discrimination and inclusion legislation. This should improve and harmonise legislation including the Commonwealth Disability Discrimination Act 1992 (DDA) and state and territory legislation. It should also consider the Disability Rights Act proposed by the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability. This should include assessing the effectiveness and appropriateness of current Disability Standards under the DDA. It should also assess the effectiveness of disability action plans across jurisdictions in creating more inclusive and accessible mainstream services and communities for people with disability, and identify opportunities for nationally consistent reporting requirements, approaches and obligations. Reforms to disability rights, discrimination and inclusion legislation should have regard to Federation Funding Agreements and practical clauses to promote inclusion and accessibility (see Action 20.2).
Action 2.2: All Australian governments should improve the recognition and responsiveness of government services to culturally and linguistically diverse concepts of disability and care by investing in targeted research, education material and capability building for government organisations and staff, professionals and providers who deliver government services. Inclusive and accessible government funded services require increased knowledge on what disability and care look like in a variety of cultural contexts. Priority should be given to research and capability building initiatives that improve understanding across government services of how culturally-specific beliefs, relationships and familial obligations influence needs, help-seeking behaviours and experiences of government services. This should be supported by investments in community-led, culturally relevant communication products that promote increased understanding of government services and supports in culturally and linguistically diverse communities. This should be underpinned by efforts to embed a highly skilled, person-centred, disability aware culture across all disability agencies and governments (see Recommendation 22).
Action 2.3: The Department of Social Services with relevant agencies should develop and trial a mechanism to publicly communicate the performance of current Disability Standards under the Disability Discrimination Act 1992. This mechanism should be easy to find and understand, and allow people to know whether a service is delivering at a higher quality than the minimum standard, such as through a star rating system. The mechanism should be trialled to highlight performance of mainstream providers against current Disability Standards, for example the Disability Standards for Education. These standards could be included in the Disability Outcomes Framework (see Action 23.1) and reported to National Cabinet by the proposed Disability Outcomes Council (see Action 20.5). This approach should have regard to the findings from the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability.
Action 2.4: All Australian governments should incorporate Disability Impact Assessments into new policy proposal assessment processes. This should ensure adequate consideration of the impact of new policy on people with disability. This should have regard to the new Disability Rights Act proposed by the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability and all state and territory disability rights and inclusion legislation.
Action 2.5: All Australian governments should take steps to protect the right to inclusive education for children with disability and developmental concerns in early childhood education and care and schools. Existing legislative instruments should be strengthened to clearly define inclusive education and include stronger accountability and monitoring of schools’ compliance against their legal obligations. The needs-based disability loadings each school receives and the use of that funding to benefit students with disability should be reported publicly. The overall performance of schools against their legislative and financial obligations should be measured and publicly reported. This should be supported by greater training for all education staff to understand the laws, policies, programs and inclusive education approaches to teaching and learning.

To improve the connection between the NDIS and mainstream services…

Action 2.6: National Cabinet should agree to a multilateral schedule to a new Disability Intergovernmental Agreement that replaces the principles for determining the responsibilities of the NDIS and other service systems, including the Applied Principles and Tables of Supports to better clarify respective responsibilities. This should clarify distinct system responsibilities and shared responsibilities (who does what and how) where a participant needs integrated planning, funding and supports. Shared accountability, including monitoring of outcomes and key performance indicators, for operationalising interface-specific arrangements, should be set out in bilateral schedules and Memoranda of Understanding. Agreed responsibilities should be incorporated into the NDIS Participant Support Rules and other NDIS Rules governing reasonable and necessary supports, including expectations for shared planning and information sharing. The multi-lateral schedule should set parameters for sharing costs for complex case resolution to ensure meeting the needs of people with disability are prioritised rather than who pays for what.
Action 2.7: The Department of Social Services, working with other Commonwealth agencies, state and territory disability agencies and the National Disability Insurance Agency, should implement a priority work program to improve coordination between complex mainstream settings and the NDIS. As a first step, the program should ensure Memoranda of Understanding are progressed immediately for the justice, hospitals, mental health and child protection interfaces in each jurisdiction. A best practice case management for complex settings approach should be developed and implemented. This should include assertive outreach to identify and support people with disability interacting with complex settings prior to them commencing NDIS access. The roles of Specialist Navigators, key mainstream agency workers and key National Disability Insurance Agency workers should be formalised as a panel of decision-makers to ensure system coordination to meet complex needs. Where necessary, this should include shared planning and shared funding. The roles of the Hospital Liaison Officers and the Justice Liaison Officers should be reviewed and clarified within the new case management for complex settings arrangements. The NDIS Complex Support Needs Pathway should be reviewed and updated to reflect these new case management arrangements. This should build on the improved working arrangements between the NDIA and hospital staff developed through the National Operational Plan for improved hospital discharge.
Action 2.8: The National Disability Insurance Agency and the Department of Education, with state and territory education and disability agencies, should develop a plan to better connect the NDIS and school education systems and improve educational outcomes for children with disability. This should be focused on ensuring consistent, fair and appropriate support arrangements for participants in school settings across Australia. The plan should outline how the school education system and NDIS will work together to ensure funding and supports are complementary, connected and outcomes focused. This could include schools operating as hubs within the community to host delivery of NDIS funded services after hours. The plan should also outline options for how to better plan, coordinate and streamline NDIS funded supports in school settings. The plan should sit as part of a dedicated Memorandum of Understanding for the school education and NDIS interface (see Action 2.6).
Action 2.9: The Productivity Commission should develop an NDIS transport policy that better meets the mobility needs of participants. The policy should define mainstream transport systems and NDIS responsibilities and outline how they should work together to ensure people with disability are able to move around in their local communities. The policy should also update current systems for determining mobility needs with a needs-based, individualised assessment that has a clear and consistent distinction between ordinary day living expenses and additional-disability related costs, along with transport-related capacity building. Following the development of the policy, the National Disability Insurance Agency in collaboration with state and territory governments will be responsible for implementation. Implementation of the new policy will include cessation of the current taxi subsidy cross-billing arrangements.
Action 2.10: The Australian Government should develop a national strategy to improve the quality of the disability ecosystem for First Nations people with disability. Designed and implemented in partnership with a new First Nations Disability Forum (see Action 20.4), the national strategy will address persistent gaps in the investment, coordination and development of culturally accessible and safe services for First Nations people with disability. It would also facilitate performance monitoring for First Nations people with disability against all Australia's Disability Strategy and the National Agreement on Closing the Gap (Targets and Priority Reforms). The national strategy should be supported by a First Nations Disability Investment Fund that prioritises the implementation of actions already identified by the Disability Sector Strengthening Plan and the forthcoming National Disability Insurance Agency First Nations Strategy.
Action 2.11*: The Australian Government should implement legislative change to allow participants once they turn 65 to receive supports in both the NDIS and the aged care system concurrently and clarify when aged care supports are reasonable and necessary. The National Disability Insurance Agency and the aged care system should institute a new joint model of cooperation, including a shared assessment model. This should ensure greater choice for older participants. This will require the Australian Government to change the clause in section 29(1)(b) of the National Disability Insurance Scheme Act 2013 and allow participants over the age of 65 to have expanded access to aged care system supports, including residential aged care, while remaining eligible for complementary NDIS supports.
Action 2.12*: The Australian Government should implement legislative or process change to allow access to the NDIS for Disability Support for Older Australians program participants. Once all remaining Disability Support for Older Australians (DSOA) participants have moved to the NDIS or aged care system, DSOA should cease.
Action 2.13: All Australian governments should agree as a matter of priority to expand universally available child development checks, to ensure the early identification of children with developmental concerns and disability and enable early intervention. This approach should build on existing good practice of maternal and child health services in states and territories and internationally for regular health and development checks for young children. It should be implemented by mainstream services working with children including maternal child health, early childhood education and care, and general practice. This aims to ensure that developmental concerns and disability are consistently identified early across all jurisdictions. There should also be a national approach to minimum data requirements. This should mean needs are met earlier and greater data on need is available to inform the design of future supports.
Action 2.14: State and territory governments should commit to and implement the general accidents stream of the National Injury Insurance Scheme. Implementation of the National Injury Insurance Scheme (NIIS) should bridge the gap for people who suffer catastrophic injury through a general accident and are not currently eligible for the existing streams of the NIIS or the NDIS (such as those aged 65 and over) or rely on the NDIS instead of the NIIS.
Action 2.15: The National Disability Insurance Agency and the Department of Social Services, working with state and territory governments and other relevant Commonwealth agencies, should update current arrangements governing the interaction between the NDIS and compensation schemes to reduce overlap and improve participant experiences. Arrangements in the interfaces between the NDIS and existing accident compensation schemes should ensure that supports are not being shifted to the NDIS, that overlap is minimised, and that participants eligible for both have certainty on what support is provided and where.
Action 2.16*: The Disability Reform Ministerial Council should agree to cease the use of ‘in-kind’ arrangements in the NDIS. This is a long running issue that needs to be resolved while balancing other priorities. Governments should consider removing specialist school transport and personal care in schools from the NDIS and returning them to be state and territory government responsibilities. Agreement to a national benchmark for service quality and access for specialist school transport should be a pre-condition.