Australian Lawyers for Human Rights submission on mental health services in SA and the NDIS | External submission

The Secretary

Social Development Committee

Parliament of South Australia

GPO Box 572

Adelaide SA 5000

Dear Secretary,

Mental Health Services in SA & the NDIS

Australian Lawyers for Human Rights (ALHR) thanks you for the opportunity to provide this submission in relation to the provision of mental health services in South Australia (SA) for persons with mental illness under the transition to the National Disability Insurance Scheme (NDIS).

ALHR

ALHR was established in 1993 and is a national association of Australian solicitors, barristers, academics, judicial officers and law students who practise and promote international human rights law in Australia. ALHR has active and engaged National, State and Territory committees and specialist thematic committees. Through advocacy, media engagement, education, networking, research and training, ALHR promotes, practices and protects universally accepted standards of human rights throughout Australia and overseas.

Summary

ALHR is alarmed that the Federal Government plans to cease block funding community mental health services and programs such as the Personal Helpers and Mentors Program (PHaMs) because of the roll-out of the NDIS.
The cessation of funding will have a negative impact on persons with severe mental illness who fail to qualify for the NDIS denying them of much needed support. It will also impose additional demands upon the resources of hospitals and police which will in practice be the organisations responsible for dealing with the impact of the proposed withdrawal of existing community mental health services and programs.
The provision of support is required for persons with mental illness to live dignified lives in the community and to participate fully in society. The aim of providing support to persons with mental illness is to allow them to build skills and confidence. Without access to community mental health services, the opportunity to build vital skills may be lost to persons with mental illness who fail to qualify for the NDIS when these services close as a result of the roll-out of the NDIS.
Mental illnesses range in severity and duration, but the NDIS only covers permanent conditions. Mental health issues may be experienced on a one-off basis, on an enduring basis or on an episodic basis, where a period of remission follows a period of mental illness. There is a wide spectrum between mental illnesses in terms of the effect on a person’s behaviour and thinking, and in terms of the duration of the mental

disorder. Because of the variable nature and duration of mental illness, it is vital that a wide variety of services are available to support the needs of vulnerable persons with mental illness. The NDIS alone will not do this.

It is the view of ALHR that community mental health services must be maintained following full transition to the NDIS. This is because:

(1) Community mental health services have a low threshold for access to their support services, while access to the NDIS has a high threshold, with many persons with severe mental illness failing to qualify for the NDIS. The NDIS application focuses on permanence of the condition and lack of functional abilities. These requirements do not readily align with the symptomatology of mental illness. Without access to community mental health services, those persons with mental illness who do not qualify for the NDIS will fall through the gaps and lose valuable support services which allow them to participate more fully in society;

(2) Community mental health services may offer services that are unavailable under the NDIS. The NDIS funds services such as home modifications, mobility aids, personal care, domestic help and capacity building supports, while some persons with mental illness may require services of a more clinical nature. ALHR argues that the types of NDIS services available should be expanded so that they may more readily assist persons with mental illness who have very different support needs than those, say, with mobility disabilities, while maintaining current community mental health service availability. ALHR advocates for a holistic approach to treating persons with mental illness so that they may reach their potential. This involves treating the whole person and not just the illness with the aim of improving the quality of life of the person with mental illness and providing them with the highest attainable standard of health. Only an expansion of the types of support available under the NDIS and the maintenance of community mental health services can achieve this; and

(3) The UN Convention on the Rights of Persons with Disabilities (CRPD), to which Australia is a signatory, promotes and protects the human rights and fundamental freedoms of persons with disabilities, while promoting respect for their inherent dignity. The CRPD emphasises the importance of the provision of support services to persons with disabilities, who include persons with severe mental illness. ALHR argues that funding for community mental services must be maintained despite the roll-out of the NDIS to ensure that persons with mental illness are afforded their right to the provision of support.

ALHR contends that the diminution in community mental health services that will occur due to the phasing out of block funding following the full implementation of the NDIS will have a negative impact on those with mental illness in the South Australian community. We therefore urge the Social Development Committee to find that the full range of mental health services must be maintained in South Australia to ensure that the support needs of South Australians with mental illness are met.

Of course similar arguments apply in relation to community services throughout Australia.

Submission on Mental Health Services in SA & the NDIS

The gap between the Federal Government’s predicted and realised percentages of mental health clients receiving NDIS support.

It is estimated that there are 3.7 million individuals living with mental illness in Australia.[1] Of these, 690,000 experience severe mental illness.[2] The Federal Government estimates that one-third of persons living with severe mental illness need ongoing support (representing 230,000 persons with severe mental illness), while the National Disability Insurance Agency (NDIA) estimates that at full roll-out, 64,000 persons with severe mental illness will be participants in the NDIS, compared with an estimated total of 460,000 overall participants.[3] This leaves a significant gap of up to 91% of persons with severe mental illness being left to rely on community mental health services to meet their needs. ALHR is of the view that this gap is alarming and expresses its concern that vital community mental health services are

losing funding due to the roll-out of the NDIS which will leave many without much needed support.

The impact of this gap on persons with mental illness is cause for great concern. In addition to those people who fail to meet the eligibility standard set by the National Disability Insurance Scheme Act 2013 (the Act),[4]

ALHR wishes to underline two further reasons for the low realised percentage of NDIS applicants. Firstly, the language used in section 24 of the Act,[5] which provides the requirements for eligibility, concentrates on the requirement of permanence. Such language is deeply stigmatising, and persons with mental illness are avoiding applying out of fear that their conditions will be classified as permanent. The treatment of mental illness focuses on recovery, and many persons with severe mental illness do not wish to consider that their condition is permanent. The recent reforms to mental health policy and law were largely to enable recovery principles to form the basis for mental health treatment. The permanence requirement operates as a barrier whereby some persons with severe mental illness will not apply for NDIS funding. Secondly, people are not applying because they believe their needs are catered for through other currently established services. These same people are often unaware of the fact that their services may eventually be terminated as the roll-out of the NDIS is completed. This is so as the NDIS receives its funding from the reallocation of funds from these current services.

The long-term consequence of this gap will be the creation of a second class of persons with mental illness, namely those who are ineligible, or do not apply, for the NDIS. The commensurate loss of support services for persons with mental illness who do not receive the NDIS will result in a loss of self-determination, autonomy, and choice and control over their lives. Such consequences constitute a breach of the human rights principle of self-determination, and illustrate the need for all States and Territories in Australia to guarantee those with mental illness the full enjoyment of their fundamental rights as promoted in the CRPD.

Of great concern to ALHR is that applicants for the NDIS who are persons with mental illness have the lowest levels of acceptance into the Scheme, with the current figure sitting at approximately 81.4%.[6] This contrasts with over 97% of NDIS applicants with conditions such as cerebral palsy, autism or intellectual disability.[7] ALHR is concerned with the alarming disparity between these figures and notes that they operate as a barrier to persons with severe mental illness to apply for NDIS funding.

As at 30 June 2018, there were 13,482 NDIS participants with severe mental illness.[8] This represents 8% of current NDIS participants and contrasts with the Federal Government’s projection that persons with severe mental illness will represent 14% of all NDIS participants.[9] Of the 13,482 NDIS participants with mental illness, a mere 227 are from SA.[10]

ALHR is concerned about the gap between the Federal Government’s projected percentages of persons with severe mental illness receiving NDIS support when compared with the realised percentages. It is the view of the ALHR that the NDIS has not, and will not, meet the coverage requirements to facilitate the needs of all persons with disabilities with support needs in Australia and that its funding must be increased by the Federal Government.

Concerned by this gap, and the lack of awareness over the fact the NDIS will replace current services, ALHR proposes both short-term and long-term recommendations. In the short-term, the Federal government should continue funding all existing mental health programs. The long-term ambition, and ultimately best outcome for persons with mental illness, is the expansion of the NDIS to close this gap permanently and to provide access to all persons with disabilities, including severe mental illness, to ongoing support needs.

The reduction in funding to the Personal Helpers and Mentors Program and the impact this will have on persons with mental illness.

ALHR is deeply concerned about the closure of the PHaMs Outreach Program and the serious impact this will have on persons with mental illness. The PHaMs Program

provides persons with severe mental illness with recovery-based support. Under PHaMs, persons with mental illness are provided with one-on-one support whereby they are assisted to access services and to participate socially and economically in the community, thus increasing their opportunities for recovery. The service achieves this through providing neighbourhood support centres and workers who offer assistance to affected individuals by helping them to manage everyday tasks, while overcoming social isolation and increasing their connections to the community.[11] Recovery as promoted by access to the PHaMs Program is about achieving an optimal state of personal, social and emotional well-being for a person with mental illness.

Access to the PHaMs Program has a low threshold for eligibility thereby increasing accessibility to the service by persons with mental illness. To access the program, persons with mental illness do not need a formal clinical diagnosis of a severe mental illness. Instead, the PHaMs Program assists those aged 16 years and over whose ability to manage their daily activities and to live independently in the community is diminished. In contrast, NDIS access has a high threshold focussing on permanence and lack of functionality, with many persons with severe mental illness failing to qualify for the NDIS.

Many persons with mental illness attempting to access the NDIS have difficulty proving that they have a permanent disability for which they have received an extended history of specialist services. Due to the nature of mental illness, disengagement or avoidance of support and services is a particular barrier to meeting the eligibility requirements of the NDIS. Statistics reveal that over 50% of current PHaMs participants are ineligible for NDIS support.[12] For these Australians, the upcoming closure of PHaMs will mean the end of their support. ALHR is particularly concerned that this will lead to the isolation and disengagement of these individuals in the community with consequential impact on other services such as hospitals and police.

The PHaMs program is transitioning to the NDIS. The PHaMs program is scheduled to close by 2019-20. Supports provided by the PHaMs program will not necessarily

be replicated under an NDIS package because the NDIS is responsible for non-clinical supports that focus on a person’s functional ability, compared with the wider range of support available under PHaMs.

There are two main concerns with PHaMs being phased out. Firstly, as indicated above, approximately 50% of persons with mental illness accessing PHaMs will not qualify for the NDIS. Secondly, with Commonwealth funding for disability programs being phased out, persons with mental illness who fail to qualify for the NDIS may lose access to valuable support programs which help them to participate socially and economically in society while living independently in the community.

It is the firm position of ALHR that the closure of the PHaMs Program violates international human rights laws, particularly the right to support available to persons with disabilities, including mental illness, enshrined in the CRPD in Article 12. The closure of the PHaMs support system is inconsistent with basic human rights principles identified in the Preamble of the CPRD, which recognises the need for States ‘to promote and protect the human rights of all persons with disabilities, including those who require more intensive support’.[13]

Article 12(3) of the CRPD expressly provides that States ‘shall take appropriate measures to provide access by persons with disabilities to the support they may require in exercising their legal capacity.’[14] General Comment No. 1, issued by the UN Committee on the Rights of Persons with Disabilities (the UN Committee) discusses the right of persons with disabilities to equal recognition before the law as articulated by Article 12.[15] The UN Committee stresses the importance of the ability to exercise decision-making skills in order to fulfil the right to exercise legal capacity.

ALHR submits that PHaMs directly facilitates this right, since the support that helpers provide to those with mental illness may extend to helping them exercise the right to make decisions and reach self-determination. Without this support, affected individuals may have impaired decision-making capacity.

ALHR emphasises that PHaMs is a critical and vital support service and strongly recommends that it be retained due to its lower threshold for eligibility and the

continued need for support for individuals with mental illness. It is the belief of ALHR that the NDIS, as it currently stands, is insufficient for those living with severe mental illness, as it is exclusionary and inaccessible due to its high threshold for eligibility. The lower threshold of the PHaMs Program allows those with mental illness to gain much-needed support to recover and reintegrate into the community. Instead of transitioning all services to the NDIS, the ALHR urges the Australian Government to distribute adequate funding to the PHaMs program (and other programs in danger of losing funding) in order to sustain its continuation as a separate service.

The ongoing requirements for block funded mental health services provided by the SA State Government after the NDIS transition.

It is the view of ALHR that block funded mental health services provided by the SA State Government after the NDIS transition must be maintained because they include a wide variety of community mental health services which provide a great breadth of support services in contrast to the non-clinical services offered under the NDIS.

The Productivity Commission defines block funding as ‘the process where governments purchase a ‘block’ of services from a provider, which is to be delivered to clients who meet certain criteria, or are referred to those providers as part of an individualised plan.’[16] Block funding was the predominant community mental health service delivery method prior to the NDIS, and as the roll-out of the NDIS progresses, block funding is largely being phased out. Block funded mental health services include rehabilitation, treatment and integration services which allow persons with mental illness to successfully contribute and function within their communities.

Community mental health services demonstrably benefit persons with mental illness. In the year 2016-17, ‘around 8.9 million community mental health care service contacts were provided to around 420,000 patients [sic].’ Indigenous persons with mental illness received community mental health services at approximately three times the rate of non-Indigenous persons with mental illness (51.2 compared to 15.7

per 1,000 population), highlighting the importance of the continuation of these vital services for Indigenous persons with mental illness to afford them access to the support needs they require to live a full and dignified life in the community.

ALHR contends that access to community support services is an integral right of persons with disabilities, including those with mental illness. Article 19(b) of the CRPD promotes the right of persons to ‘access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community.’[17]

The transition to the NDIS has the purpose of providing participants with more choice, control and personalisation of services via individualised funding. However, as noted in point one above, many persons with severe mental illness will be ineligible to receive NDIS funding. If the phasing out of block funding continues in concert with the transition to the NDIS then persons with mental illness will have reduced access to much needed support services. That is why it is so important for the Federal Government to continue to block fund community mental health services. It is the view of ALHR that block funding must be maintained and must not be phased out in concert with the roll-out of the NDIS because block funding of community mental health services results in accessible support services with few exclusions for persons with a wide range of mental illnesses with varying chronicity.[18] ALHR also highlights the need for block funding to continue to ensure that Indigenous persons, who are prevalent users of community mental health services, can receive the supports that they need.

ALHR wishes to emphasise that persons with mental illness are losing access to support services due to the transition to the NDIS. ALHR urges the Committee to recognise the gaps in mental health services created by the transition to the NDIS and hence the need for continued block funding rather than having services exclusively funded under the NDIS. In the view of ALHR, it is vitally important that, at a minimum, block funding is retained for critical services including crisis care, rural

services, capacity building and services targeting Indigenous and disadvantaged persons.

The effects on South Australians with mental health issues who are deemed ineligible to receive NDIS funding.

South Australians living with mental illness will continue to require mental health services if they are deemed ineligible to receive NDIS funding. Because of the complex nature of mental illness, and the roll back of Commonwealth funding for mental health services, there is a lack of clarity over continuity of mental health services for persons with mental illness who are deemed ineligible to receive NDIS funding. ALHR recommends, as a matter of urgency, that the Commonwealth and State and Territory Governments clarify whether they intend to provide continuity of mental health services and address how the emerging gaps created by the transition of existing mental health services into the NDIS will be filled. ALHR contends this is of great importance else we risk leaving persons with mental illness who are deemed ineligible to receive NDIS funding with no access to vital mental health services. Of great concern to ALHR is that the implementation of the NDIS will have the unintended consequence of removal of supports for persons with mental illness who are ineligible for NDIS funding but who need continued mental health support now and into the future.

It is ALHR’s view that the NDIS should be accessible for persons with severe mental illness, while appropriate mental health services remain for those who do not qualify. ALHR is alarmed at the forecasted low number of persons with mental illness who will qualify for participation in the NDIS. Those who fail to qualify for the NDIS need to feel confident that the mental health services that they need will continue to exist and be accessible to them. Without this assurance, persons with mental illness may suffer negative health impacts arising from the uncertainty of whether they will continue to be able to access vital support. Persons who fail to qualify for the NDIS and lose their access community mental health services due to the phasing out of block funding may lose the ability to build capacity, to participate effectively in the community and to be self-determining. Lack of access to community mental health

services may also lead to the isolation and disengagement of affected persons with mental illness.

The sufficiency of services provided to persons with mental illness who are accepted into the NDIS.

The goal of the NDIS is to improve social and economic outcomes for persons with severe and permanent disabilities through the provision of individually-funded support packages. The roll-out of the NDIS for mental illness was complicated due to the late inclusion of mental illness into the Scheme, creating uncertainty between the roles and responsibilities between the NDIS and the mental health system.

To qualify for services under the NDIS, persons with mental illness must have significant and permanent functional impairment. Non-clinical services, including allied health therapies, are provided to persons with mental illness who are accepted into the NDIS.[19] The NDIS also funds supports that assist a person with severe mental illness to undertake the tasks of daily living. These include assistance with household tasks, assistance to build capacity to live independently, support to build social relationships and support to engage in community activities such as recreation, education, training and employment. The mental health system remains responsible for providing clinical and medical services to those with mental illness who are accepted into the NDIS.

It is the view of ALHR that the delineation of services funding between the NDIS and the mental health system is complex and leads to funding gaps. The NDIS has an emphasis on funding supports such as assistive technology, home modifications, employment, higher education and vocational education and training, vehicle modifications, prosthetic limbs, personal care supports, recreation supports, sustaining informal supports, transport, et cetera.[20] The majority of these categories of supports are designed for persons with physical rather than mental disabilities.

The support needs of persons with mental illness are arguably more complex than those of persons with physical disabilities due to the symptomatology associated with severe mental illness. The sometimes debilitating effects of mental illness vary from person to person, as does its chronicity and frequency. The types of support that

persons with mental disabilities seek often include access to psychologists, cognitive behaviour therapy and peer support workers. ALHR believes that the NDIA should amend its Operational Guidelines to include the types of supports relevant to participants with mental illness and that align with the complex support needs of persons with mental illness.

Of grave concern to ALHR is that Aboriginal and Torres Strait Islander people are feeling disconnected, not engaging with NDIS or not activating their plans because they are unable to connect to Aboriginal provided services. It is the view of ALHR that increasing the number of Indigenous led service providers should be prioritised to make the Scheme culturally relevant.[21]

It is the view of ALHR that the NDIA must expand the range of services available to participants with severe mental illness. These must include some clinical mental health supports, including access to psychologists.[22] The NDIA should also focus on developing a lived experience workforce with paid peer and volunteer opportunities.[23] There is strong evidence that people with lived experience of mental illness are highly effective at supporting others with mental illness.

Overall, ALHR views the services provided to NDIS participants with mental illness as inadequate. It is the firm belief of ALHR that a wider range of services be made to persons with mental illness that better align with the symptomatology of mental illness. ALHR asks the Committee to ensure that support services are maintained in SA for Indigenous persons to ensure that they are able to engage with vital support needs given the paucity of Indigenous-led services available under the NDIS.

The effects on South Australians with mental illness undertaking the application process for the NDIS.

A number of concerns have been raised about the application process and its impact upon persons with mental illness applying for the NDIS. ALHR is concerned that the application process for NDIS funding and its eligibility criteria are negatively affecting

persons with mental illness because of the complex nature of the application and the focus on permanence and lack of functionality.

The application process for the NDIS under the Act is onerous with numerous requirements to be met. The requirements include the presence of disability attributable to a variety of impairments including a psychiatric condition, permanence of the impairment, reduced functioning in areas including social interaction, mobility and self-care, along with a life-long requirement for support under the NDIS.

Persons with mental illness applying for NDIS funding must complete and submit a complex application form. As part of the application process, evidence must be provided from a treating health professional outlining the permanence and functional impacts of an applicant’s mental illness on their everyday life. The application is reviewed against the requirements stipulated by the Act and an applicant may be required to provide further evidence of disability. Application documents are assessed by the NDIA and an over-the-phone interview conducted by an NDIA assessor. Common complaints made about the NDIS application process have been that NDIA assessors have poor knowledge of mental illness and fail to explain to applicants that the phone interview forms part of the application process. This denies persons with mental illness the opportunity to have in place a supporter to assist them during the interview.[24] ALHR notes that the right to support is promoted throughout the CRPD and is a vital right to allow persons with disabilities to be self-determining and make their own choices. We further note that the lack of a supporter during the phone interview process may leave a vulnerable person with mental illness open to abuse and undue influence.

The application process requires applicants to obtain evidence from healthcare professionals detailing the extent of their mental illness. The gathering of this information can be difficult for persons with mental illness and the nature of disclosures required for the application process may prove traumatising for a person with disabilities to supply. Some persons with mental illness encounter difficulties supplying the requisite evidence of permanence and lack of functionality to the NDIA. This is because they have avoided accessing healthcare and may not have regularly attended prescribed mental health support sessions. Obtaining evidence from

healthcare professionals can also be costly, and there may be issues with availability of requisite specialists. There is also a lack of support for people undertaking the application process. The onerous requirements of the NDIS application process and the lack of support provided result in feelings of hopelessness leading many persons with mental illness to not apply for the NDIS or to abandon a submitted application.

The focus on proof of permanence and limited functionality for NDIS eligibility does not align well with the symptomatology of mental illness. The criteria does not account for the fluctuating and often transient nature and severity of mental illness. Further, the requirements are in direct opposition to the discourse used in community mental health services which focus on the prospect that recovery is achievable and desirable. In best-practice mental health care, language centres around empowerment, recovery and ability.[25] The application criteria used by the NDIA for access to the NDIS disempowers persons with mental illness with its focus on permanence and life-long disability, meaning that many such persons abandon the application process. With the reduction in funding to community mental health services related to the roll-out of the NDIS, those who abandon the NDIS application process may experience a loss of support services, negatively impacting on their ability to function economically and socially in society.

Further, ALHR notes that the permanency threshold complicates the NDIS application process for people with mental illnesses in another way. A person experiencing mental illness is unlikely to want to conceptualise their condition as permanent. Forcing them to not only face that reality, but also actively attest to it to a government body, may actually exacerbate their mental illness. For example, if a person with an anxiety disorder has to grapple with the permanence of their condition, this will make them more anxious. Being forced to meet a permanence threshold may act as a deterrent and may prevent some people with mental illnesses from applying, when they would otherwise be entitled to benefits under the Scheme.

Furthermore, the requirement of permanence could, albeit unintentionally, suggest that people whose mental illnesses are not permanent are less deserving of support. Some mental health problems are, by nature, short-term; for example, reactive depression (adjustment disorder), a type of depression that arises out of difficult

immediate circumstances, may be alleviated once these circumstances are resolved. Although short-term, reactive depression can be highly debilitating, but someone experiencing it will not be eligible for the NDIS. There is a risk that the permanency requirement will be interpreted as trivialising the struggle of people experiencing short-term mental health problems. However, it is recognised that the ‘long-term’ requirement aligns with the description of a disability in Preamble (e) of the CRPD and draws a boundary as to who is eligible for NDIS funding and who is not, given resources are finite.

Applying for NDIS funding is a complex process. It is characteristic of a number of mental illnesses that an individual will experience lethargy and will have difficulty concentrating and seeing tasks to completion.[26] These symptoms are likely to impedo someone experiencing a mental illness from completing a lengthy, demanding application process, and are likely to be a barrier to attaining NDIS funding.

That said, even if a person with mental illness is able to complete the application process successfully, they won’t necessarily be getting the help that they need through the Scheme. The services that can be provided through the NDIS are not, by and large, a good fit for mental illness; most notably, treatment of psychiatric conditions, such as therapy, counselling and psychiatric help is not covered.[27]

ALHR believes that the poor fit of mental illness within the framework of the NDIS indicates that a separate stream for persons with mental illness with a focus on recovery rather than permanence and lack of functionality, which has been called a specialist psychosocial disability gateway, is required.[28] Further, it is the view of ALHR that funding should be made available to train NDIA assessors so that they may better understand mental illness. Support should be provided to persons with mental illness undergoing the complex application process given its propensity to be traumatising, overwhelming and to exacerbate a person’s mental illness.

Any other relevant matters:

(a) The NDIS application process has a focus on permanence and lack of functionality. These requirements do not readily align with the symptomatology of mental illness and may operate as a barrier to persons with mental illness applying for the NDIS or continuing the application process thus negatively impacting upon persons with mental illness and necessitating the continued availability of community mental health services.

ALHR notes its concern with the eligibility criteria for persons with mental illness. Mental illness and its symptomology differs significantly from physical, sensory and cognitive disabilities, and it is the view of ALHR that the focus of the NDIS application on permanence and lack of functionality acts as a barrier to access to the NDIS by persons with mental illness.[29] This barrier may result in persons with mental illness either not applying for the NDIS at all or may result in them abandoning or withdrawing an application.

Persons with disabilities, including mental illness, may apply to the NDIA for funded supports under an individual plan. Prospective participants are required to submit an NDIS Access Request Form to the NDIA and provide supporting evidence of their disability.[30] The Scheme is supported by the Act. The Act does not specifically define the term disability.

Section 24 of the Act outlines the disability requirements that must be met for a person to qualify under the Scheme. Pursuant to s 24(1) of the Act, a person meets the disability requirements if:

(a) the person has a disability that is attributable to one or more intellectual, cognitive, neurological, sensory or physical impairments or to one or more impairments attributable to a psychiatric condition; and

(b) the impairment or impairments are, or are likely to be, permanent (the permanency requirement); and

(c) the impairment or impairments result in substantially reduced functional capacity to undertake, or psychosocial functioning in undertaking, one or more of the following activities: (i) communication, (ii) social interaction, (iii) learning, (iv) mobility, (v) self-care, (vi) self-management; and

(d) the impairment or impairments affect the person’s capacity for social and economic participation; and

(e) the person is likely to require support under the National Disability Insurance Scheme for the person’s lifetime.

ALHR is concerned that NDIS eligibility is unduly focused on requirements of permanence and a lack of functionality, requirements which do not necessarily align with the characteristics of mental illness. The process may be seen as operating as an arduous barrier to obtaining the assistance that many Australians with a mental illness require.

As mentioned above, in Australia there are approximately 690,000 people living with severe mental illness[31], 230,000 of whom require ongoing support.[32] However, even at full roll-out, the NDIS is only estimated to cover the needs of approximately 64,000 persons with severe mental illness, meaning that around 91% of individuals with a mental illness will have to rely on non-NDIS services for support.[33] In order to better understand the disparity in these statistics, it is necessary to consider the nexus between these failures and the requirements of permanence and lack of functionality for NDIS recipients with mental illness. The language of permanence is contrary to the general focus on hope and recovery that is prevalent in the mental health sector[34] as the emphasis on a person’s current mental state and lack of functionality comes ‘at the expense of a more forward-looking assessment of capacity that could take into account the outcomes of early intervention and appropriate and flexible support.’[35] As such, ALHR is concerned that such requirements are alienating and inadvertently depicts mental illness as an irreparable affliction for which there is no hope.[36]

The language of permanence not only poses rhetorical issues, but practical ones too, as according to NDIS stakeholders, many people with a mental illness are withdrawing mid-way through the application process, or simply not applying at all.[37] While this might be attributed to a range of causes, such as a lack of understanding of the Scheme[38] or the general complexity of the process[39], reinforcing the permanence of mental illness and one’s lack of independence is likely a contributing factor. A primary reason why individuals may be dissuaded from completing or beginning their applications is that some persons with mental illness simply do not view their condition as permanent[40]. It may also be due to the fact that medical professionals are reluctant to give a diagnosis of permanent impairment, particularly to young persons with mental illness, given the overwhelming and negative impact that such a diagnosis would

engender.[41] The reliance on diagnosis as a means of determining the longevity of an illness is a blunt instrument.[42] This is considered so because assessing functionality and predicting permanence is complex for the medical professional and demoralising for the individual in question[43]. It is therefore problematic that the term permanence is treated as a defining quality of mental illness. This focus on permanence is burdensome on persons with mental illness tasked with the challenge of collecting a longitudinal body of evidence proving the permanence and lack of functionality of their illness when applying to the NDIA for the NDIS.[44]

While a number of CRPD principles are reflected in the Act, it is important to consider Australia’s broader responsibility to ensure that persons with mental illness enjoy the same fundamental rights as others. In the Preamble to the CRPD, disability is described as an evolving concept which ‘results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others’.[45] The requirements of permanence and lack of functionality arguably impede the objectives outlined in the Preamble as they do not promote the full and effective participation of persons with mental illness in society. Additionally, the NDIS requirements are also contrary to Article 3,[46] which emphasise the importance of respect for dignity, non-discrimination, and equality of opportunity. As such, ALHR is concerned that the NDIA’s emphasis on the permanence of a person’s illness and lack of functionality undermines these key human rights principles and the general movement towards wellness and positive living.

It is the view of ALHR that the current NDIS application process should be reformed as a matter of urgency. The application process should be tailored to the needs of individuals,[47] with access to support networks to provide assistance to persons with their applications.[48] Amending the permanence requirement in the Act to promote a recovery-oriented approach would enable easier access to NDIS funding, along with greater independence and social and economic participation among its participants.[49] ALHR recommends replacing the word permanent with terms such as ongoing, enduring, or chronic.

b. The limited definition of disability used in the NDIS application process is overly medical and diverges from the social model of disability promoted in the UN Convention on the Rights of Persons with Disabilities and acts as a limit upon the number of persons who

will be able to successfully apply for the NDIS, including persons with mental illness.

It is the view of ALHR that the definition of disability adopted by the NDIA is unduly narrow, resulting in a fewer persons with disabilities successfully receiving funding under the NDIS. Nor does the definition reflect the description of disability under the CRPD which promotes a social model of disability where disability is viewed as an evolving concept that results from the interaction between persons with impairments and attitudinal and environmental barriers which hinder their full and effective participation in society.[50]

While the Act does not define disability, section 24 outlines the disability requirements to be considered under the Scheme. For a person to be capable of receiving support, they must have an ‘impairment’ that is, or is likely to be, permanent,[51] and is likely to require support from the NDIS for the person’s lifetime.[52] This impairment must ‘substantially reduce’ their ‘functional capacity to undertake’ the following activities: communication, social interaction, learning, mobility, self-care or self-management.[53] The Administrative Appeals Tribunal held in Mulligan that these standards represent a high bar to be met, and that they are more concerned with the external, physical functional obstacles a person may encounter rather than any direct consideration of a person’s wellbeing.[54] NDIS rules state that a substantially reduced capacity to undertake activities occurs when a person with disabilities cannot perform an activity without assistive technology, home modifications, the aid of another person, or cannot perform the activity at all even with that assistance.[55] Viewing disability through the lens of functional obstacles does not align with the challenges experienced by persons with mental illness, and results in persons with mental illness falling through the gaps and not receiving NDIS funding.

It is the view of ALHR that the definition of disability adopted by the NDIA should be broadened to better reflect the social model of disability

advocated by the CRPD. Instead of focussing on functionality, the use of the social model of disability would recognise the different types of barriers encountered by persons with disabilities, including mental illness, expand the support offered to these individuals, while breaking down societal barriers to accessing support.

Conclusion

ALHR congratulates the Committee for initiating this consultation. ALHR urges the Committee to find that an alarming gap exists between the number of persons with severe mental illness and the number of those persons who will qualify for the NDIS. Further, ALHR recommends that the Committee find that there is a real need to continue block funding community mental health services to ensure that persons with mental illness who do not qualify for the NDIS have access to adequate services in the community. ALHR reiterates that the fulfilment of support needs is a recurring theme of the CRPD. The application process for access to the NDIS is onerous and its requirements do not align well with the symptomatology of mental illness, this acts as a barrier to the NDIS application process for persons with mental illness and can have a detrimental effect on their health and well-being. ALHR is of the view that the services offered to persons with mental illness under the NDIS are insufficient and must be broadened to better reflect the support needs of persons with mental illness. Further, ALHR asks the Committee to consider the narrow definition of disability used by the NDIA and recognise that a wider, more inclusive definition of disability is indicated by the CRPD.

If you would like to discuss any aspect of this submission, please email ALHR President Kerry Weste at: president@alhr.org.au.

Yours faithfully

Kerry Weste

President

Australian Lawyers for Human Rights

Author: Susan Peukert

Contributors from the Human Rights National and International Perspectives course at Adelaide Law School, University of Adelaide:

Alexandra Beal, Salvatore Condello, Hilary D’Angelo, Joanne Easson, Sascha Kelly, Shannon LaFontaine, Ferguson McPharlin, Robert Roe, Millicent Sarre, John Swan, Liam Thatcher, Sufwan Wahabzada

[1] Jennifer Smith-Merry, Nicola Hancock, Amanda Bresnan, Ivy Yen, John Gilroy and Gwynnyth Llewellyn, ‘Mind the Gap: The National Disability Insurance Scheme and Psychosocial Disability. Final Report: Stakeholder Identified Gaps and Solutions’ (Report, University of Sydney, 2018) 4. [2] Ibid. [3] Ibid. [4] National Disability Insurance Scheme Act 2013 (Cth). [5] Ibid s 24. [6] Jennifer Smith-Merry, Nicola Hancock, Amanda Bresnan, Ivy Yen, John Gilroy and Gwynnyth Llewellyn, ‘Mind the Gap: The National Disability Insurance Scheme and Psychosocial Disability. Final Report: Stakeholder Identified Gaps and Solutions’ (Report, University of Sydney, 2018) 4. [7] Ibid. [8] Monitoring Mental Health and Suicide Prevention Reform: National Report 2018 (National Mental Health Commission, 2018) 23. [9] Ibid. [10] Ibid. [11] https://www.dss.gov.au/our-responsibilities/mental-health/programs-services/personal-helpers-and-mentors-phams. [12] https://www.pc.gov.au/__data/assets/pdf_file/0004/219415/subpp0308-ndis-costs.pdf 6. [13] Convention of the Rights of Persons with Disabilities, opened for signature 13 December 2006, 2515 UNTS 3 (entered into force 3 May 2008) Preamble (j). [14] Convention of the Rights of Persons with Disabilities, opened for signature 13 December 2006, 2515 UNTS 3 (entered into force 3 May 2008) Art 12(3).

[15] UN Committee on the Rights of Persons with Disabilities, General Comment No. 1: Article 12: Equal Recognition before the Law, 11th sess, UN Doc CRPD/C/GC/1 (19 May 2014).

[16] Productivity Commission, ‘National Disability Insurance Scheme (NDIS) Costs; Study Report’ (online) https://www.pc.gov.au/inquiries/completed/ndis-costs/report/ndis-costs.pdf 71.

[17] Convention of the Rights of Persons with Disabilities, opened for signature 13 December 2006, 2515 UNTS 3 (entered into force 3 May 2008) Art 19(b).

[18] The mental health programs and services currently provided under the Department of Social Services include ‘A Better Life’ (ABLe) program, Carers and Work support, Family Mental Health Support Services (FMHSS) for children and families, Mental Health Respite: Carer Support (MHR:CS) program, PHaMs support and the PHaMs Employment service. Furthermore, services such as Partners in Recovery (PIR) and Support for Day to Day Living in the Community (D2DL), which support individuals with ‘severe and persistent mental illness[es]’, are also provided under the Department of Health. However, access to funding for services including the MHR:CS, PHaMs, PIR and D2DL are being transferred under the NDIS, which requires applicants to receive approval for services on an individual basis.

[19] National Disability Insurance Agency, ‘Supports the NDIS will fund in relation to healthcare’ (Fact Sheet) 1 https://www.ndis.gov.au/html/sites/default/files/documents/fact_sheet_supports_ndis_fund_healthcare.pdf.

[20] National Disability Insurance Agency, Operational Guidelines- Including specific types of supports in plans, National Disability Insurance Scheme https://www.ndis.gov.au/Operational-Guideline/including.html.

[21] Ibid 28.

[22] Mental Health Coalition SA, Submission to Productivity Commission, NDIS Costs: Productivity Commission Position Paper, July 2017, 5 https://www.pc.gov.au/__data/assets/pdf_file/0004/219415/subpp0308-ndis-costs.pdf. [23] Ibid.

[24] The University of Sydney, ‘Mind the Gap: The National Disability and Insurance Scheme and psychosocial disability’ (Final Report: Stakeholder identified gaps and solutions, 2018) 5.

[25] Joint Standing Committee on the National Disability Insurance Scheme, Provision of Services under the NDIS for People with Psychosocial Disabilities related to a Mental Health Condition (Commonwealth of Australia, 2017) 2.13.

[26] https://www.beyondblue.org.au/the-facts/depression/signs-and-symptoms?gclid=CjwkKCAjwo_HdBRBjEiwAiPPXpG5GdTz7nCjv64Fmyu9sghnYAGXGkzjlmwFP-qQSQtRW6SuS-QNGXRoCyE4QAvD_BwE

[27] https://www.ndis.gov.au/html/sites/default/files/documents/supports_ndis_fund_mental_health2_0.pdf

[28] The University of Sydney, ‘Mind the Gap: The National Disability and Insurance Scheme and psychosocial disability’ (Final Report: Stakeholder identified gaps and solutions, 2018) 6.

[29] Ibid ix.

[30] National Disability Insurance Agency, Completing Your Access Form, National Disability Insurance Scheme https://www.ndis.gov.au/people-with-disability/access-requirements/completing-your-access-request-form.html.

[31] The University of Sydney, ‘Mind the Gap: The National Disability and Insurance Scheme and psychosocial disability’ (Final Report: Stakeholder identified gaps and solutions, 2018) 4.

[32] Ibid 4.

[33] Ibid 13.

[34] Ibid 5.

[35] Mind Australia report 7.

[36] The University of Sydney, above n 6, 13.

[37] Ibid 12.

[38] Ibid 12.

[39] Ibid 12.

[40] Joint Standing Committee on the National Disability Insurance Scheme, Parliament of Australia, Provision of services under the NDIS for people with psychosocial disabilities related to a mental health condition (2017) 10 [2.15]. [41] Ibid 11 [2.16].

[42] Ibid 14 [2.31].

[43] Ibid 13 [2.25].

[44] The University of Sydney, above n 6, 19.

[45] Convention on the Rights of Persons with Disabilities, opened for signature 30 March 2007, vol. 2515 (entered into force 17 July 2008) Preamble (e).

[46] Ibid Art 3

[47] The University of Sydney, above n 6, 15.

[48] Ibid 20.

[49] Joint Standing Committee on the National Disability Insurance Scheme, above n 16, 12 [2.20].

[50] Convention on the Rights of Persons with Disabilities, opened for signature 30 March 2007, vol. 2515 (entered into force 17 July 2008) Preamble (e).

[51] National Disability Insurance Scheme 2013 (Cth), s 24(1)(b).

[52] Ibid, s 24(1)(d).

[53] Ibid, s 24(1)(c)(i)-(vi).

[54] Mulligan and National Disability Insurance Agency [2015] AATA 974, In that case, Mr Mulligan was rejected for support under the scheme because his ischaemic heart disease and cardiomyopathy were not seen to impact his functional capacity under the act, despite describing how it made those activities substantially more difficult.

[55] National Disability Insurance Scheme (Becoming a Participant Rules) 2016 (Cth), Pt 54.