There is a lot of goodwill in the Australian community for people with disabilities and mental illnesses and our families. But in spite of this, NDIS and mental health are in crisis. Governments have proven to be unable to lead in making community inclusion a reality. Service systems remain provider-centric, fragmented and impersonal. Businesses and schools want to help but are unsure how to to make community inclusion work.
There is a deep crisis in leadership in disability and mental health. Because governments and policy-makers tend to have little personal experience in these areas, they typically outsource responsibility for leadership and reform to vested interests in the disability and mental health industries (service providers, health practitioners, consultants and academics).
The result is a web of dysfunctional service systems riddled with conflicts of interest. NDIS was supposed to address this dysfunction, but it’s implementation by people used to provider-centred systems has replicated the provider-centric culture of the old disability industry. Mental health reform strategies repeat the same pattern, year after year.
Amidst all the attempts at reform in the last three decades, the key and enduring problem has been the lack of an independent representative political voice of people with disabilities and mental illnesses and our families. Without our leadership in reform, services and support systems will continue to be driven by the very people who are responsible for past and present failures.
Until this problem is rectified, our issues will continue to be poorly served and service systems will remain provider-centred instead of genuinely person- and family-centred.
This is our policy agenda to reform supports and services in disability and mental health. Bold and innovative changes are needed on both demand and supply sides of the equation – reforms that personalise supports, introduce accountability mechanisms for institutions, and offer incentives for employers to change their ways of doing things.
The key theme in our agenda is a systematic shift in culture from provider-centred service systems to person- and family-centred supports, oriented to community inclusion.
NDIS has been established as a statutory authority of the Commonwealth, which makes it difficult for governments to intervene directly in its operations. There are only two ways to change its culture and operations, and our agenda pursues these simultaneously: the first is to make changes in the NDIS legislation, and the second is to build up the capacity of people with disabilities and mental illnesses and our families independently of NDIS, complementing its structural deficiencies.
This is our 14-point policy agenda.
1. All individuals with a diagnosed disability or mental illness (whether participants in NDIS or not) would be entitled to an Individual Support Co-ordination and Advocacy Package of $10,000 per year. This package may be used for three purposes only: to purchase the services of a Support Co-ordinator (selected by the individual); to purchase a person-controlled information and management tool with which to record interactions and transactions and manage an individual plan; and third, to purchase the services of an Advocate (an individual and/or an advocacy group of their choice).
This funding supplements existing NDIS packages (for NDIS participants) and helps address the unmet needs for support coordination and advocacy for individuals not eligible for NDIS funding. It would be made available to an initial pool of 800,000 people, at a cost of $8bn.
2. To be eligible for an Individual Support Co-ordination and Advocacy Package, individuals must join a team in the same locality – either a Circle of Support or a Network of Peers. Payments are conditional upon participation.
A Circle of Support will typically involve 8-10 people comprising immediate and extended family, friends, neighbours, shopkeepers, volunteer drivers, local sport and recreation leaders, faith and community groups. The Circle undertakes to meet monthly as a base commitment in supporting the person at the centre of their Circle. The Circle will usually act as the primary unit of support for the person in establishing support plans and pursuing personal and social goals.
A Network of Peers will typically be a participant-governed group of at least 10 people which aims to develop mutual supports, create local support options and assistance in accessing local services, and enable participants to develop independent living arrangements.
This measure will redirect NDIS resources for Local Area Coordination away from ineffective external service providers to personalised networks built around real people.
3. A Support Co-ordinator would be selected and appointed by each individual, and may be a family member, an accountant, a personal coach, a health or community services practitioner, or a community organisation.
4. A person-controlled information and management tool is an entitlement for every person with a diagnosed disability or mental illness, which would record in electronic form every meeting, decision and transaction between the individual and service providers and practitioners. It would serve as a consolidated information record which would comprise all components of an individuals’ support and care history. It would also function as a technology platform for the management of an individual budget and support plan for those who wish to use it.
Individuals may elect to use an NDIS-supplied information and management tool, or they may choose another tool of their preference. Various tools are now on available on the market.
5. An Advocate may be an individual and/or an advocacy group selected and appointed by each individual. While individualised funding of personal supports has become widely accepted, funding for representative ‘peak’ and advocacy bodies has remained stuck in the old ‘block-funding’ paradigm whereby governments select these bodies rather than people with disabilities and mental illnesses and our families.
It is not the role of governments to determine which representative bodies should represent us. Individuals may allocate a portion of their individual support package to engage an Advocate, and/or allocate a portion to an advocacy group of their choice.
In addition, an amount of $100 from an individual support package may be allocated to an Advocate or advocacy group to represent the family of the individual. By pooling these vouchers of $100, families of people with disabilities and mental illnesses can select and fund their own form of representation.
These arrangements would replace existing Commonwealth and state funding for ‘peak’ bodies and advocacy groups.
6. The NDIS Act 2013 should be revised to enable a more person-centred culture to develop in NDIS and to establish beyond doubt that a person’s support plan is the prerogative of each person and their family, and that the NDIA is responsible only for determining the total amount of public funds that may be made available.
Much of the lengthy delay and bureaucratic obfuscation in NDIS is caused by NDIA seeking to approve or deny items in plans that are the sole prerogative of the participant and their family. Self-determination on the part of participants is also impeded by the excessive imbalance in power between participants and services – much of this is caused by a conflict of interest on the part of services which simultaneously manage funding and the provision of supports, when they should be restricted to one or other of these functions but not both.
To create a more person-centred culture in NDIS, the NDIS Act 2013 would be amended as follows:
(a) the design of a support plan resides with the participant and not with the CEO of NDIS;
(b) a support plan must be approved by both the participant and NDIS, and not solely by the CEO of NDIS;
(c) where a participant is living with their family and is in the primary care of their family, the participant and the family unit should jointly share in the design of a support plan, and the family unit should not be excluded from this process;
(d) the only matter in relation to plans where NDIA has sole responsibility is in determining the total amount of public funds that may be made available; and
(e) a registered NDIS provider may undertake one, but not both, of managing a participant’s funding and provision of supports.
7. The NDIS Act 2013 should also be revised to create a more open and less secretive culture in NDIS. It would a legislative requirement for NDIS to disclose on its website the following information:
(a) the results of Appeals/Review processes and court decisions, and the changes in practice required of NDIS by these decisions;
(b) the actual costs, including variations above the NDIS price guide along with cost averages, for key items in support plans; and
(c) the remuneration of NDIS senior executives.
8. 50% of the NDIS Board should be elected by NDIS participants, and 50% appointed by government.
To date the NDIS Board has been unfit for purpose, making one mistake after another in misunderstanding the nature of disability support and community inclusion. It’s appointed members have tended to be either inappropriate corporate sector appointees, or ‘usual suspects’ from the old disempowering disability industry.
Most disability service organisations in Australia were formed by parents of people with disabilities, or by people with disabilities themselves. Over a thirty year period from the 1980s, these organisations were captured by their managements, and families in particular were removed from governing boards in favour of ‘external people with expertise’. During this period of external corporate model governance, the disability service system came to be widely acknowledged as ‘dysfunctional’.
The implementation of NDIS has suffered greatly from a perpetuation of this corporate model of governance and its culture of paternalism. An election of 50% of the NDIS Board by participants would assist the formation of a governing culture that is attuned to the self-determining purpose of NDIS.
Local appeals panels should also consist of 50% people with disabilities drawn from outside NDIS, and 50% appointed by NDIS.
9. The implementation of NDIS to date has suffered greatly from adoption of a flawed assumption that family carers want to be ‘relieved’ of their caring role so they may take up a ‘normal’ work and family life. This has led to the exclusion of families from recognition as the primary unit of care in the lives of the majority of people with disabilities and mental illnesses.
NDIS should provide a Family Support Entitlement for familes caring for an NDIS participant at home. This would be an amount equivalent to the purchase cost of six weeks of supports for their family member, which may be used for respite, therapy, counselling or any other purpose chosen by the family that enhances the family’s capacity to sustain their caring role.
10. NDIS was established in the expectation that many people with disabilities and mental illnesses would be assisted into paid employment. To date, little progress has been made in this direction. While many people can and should find their way into the paid workforce, a key obstacle is the shortage of suitable positions. Small and micro-business activity is a more feasible option for many.
A Small /Micro-Business Development Grant of $5,000 per year for a maximum of three years would be made available by the Commonwealth for selected participants to turbo-charge their prospects of entering the world of paid work.
11. To create a strong financial incentive for employers to change their hiring patterns, a permanent Social Inclusion Corporate Tax Rate of 15% would be introduced for businesses in which 20% or more of employees are people with disabilities, mental illnesses, and/or people who have a history of long-term exclusion from the labour market.
12. Funding for support for school students with disabilities and mental health and behavioural challenges by the states has remained locked in the old ‘block funding’ model, where payments are directed to schools to use as they decide. These funds should be allocated to the families of these students and not to schools, so that each family may purchase the form of assistance most suited to the needs of each child.
It would be mandatory for states, in these funding arrangements, to use the payment procedures established for the Commonwealth’s Individual Support Co-ordination and Advocacy Package, and not duplicate administrative arrangements.
13. Funding for early education and child care for children with disabilities by the states should also be allocated to the families of these kids and not to providers.
14. Suicide rates remain stable in Australia at 12.3 per 100,000, with 8 deaths per day and an assumed suicide attempt rate at 24 per day. Despite extensive public discussion of the problem and major increases in funding for suicide prevention programs, the incidence of suicide is not declining. Public education programs about suicide do not reduce its incidence – the principal factor in deterring at-risk individuals is personal and social relationships, but funded programs have tended to be driven by NGO contractors who supply only information, crisis-lines and post-crisis supports but not personal connections with a prevention capability.
Suicide prevention funding should be redirected from NGO contractors to the identification of at-risk individuals and the building of intensive support networks around these individuals, drawing on the Circles of Support model. Existing service providers are ill-suited to this work, since their cultures are immersed in the industrial and contractual not the relational and mutual. More suitable instruments in civil society are available. This shift in mechanism continues the movement in paradigm from provider-centred to person-centred supports and interventions, which governments in Australia have tended to support only sporadically and with lip-service, without serious life-saving commitment.