Submission to the Joint Standing Committee on the National Disability Insurance Scheme: Current

Scheme Implementation and Forecasting for the NDIS.

10th February 2022

Prepared by Ruth Langmead

BSc Occupational Therapy; MA Community Development

INTRODUCTION As a Senior Occupational Therapist, NDIS Community Development Officer ( Mental Health, Public Health, Dental Services) and Sessional Academic (Curtin University School of Occupational Therapy, Social Work , Speech Pathology) I welcome the opportunity to provide feedback to the Joint Standing Committee on the National Disability Insurance Scheme . I applaud NDIA’s commitment to improving NDIS, specifically ensuring equity of funding and scheme sustainability though analysis of NDIS implementation. As an individual advocate, allied health professional and human rights practitioner I am committed to ensuring the scheme addresses the gaps and barriers that currently prevent our most oppressed and marginalised community members living with disability from experiencing full social and economic inclusion and therefore dignity within our society. It is my opinion, informed by my professional practice and academic research that this exclusion is overwhelmingly experienced by people living with chronic and persistent mental health conditions, which the scheme identifies as psychosocial disability participants.

The following submission are opinions of the author alone and not representative of any one organisation the author is associated with. This submission refers specifically to scheme implementation and forecasting for Psychosocial Disability. The submission provides comment on each of the Terms of Reference (items a-h) with case scenarios embedded to demonstrate existing problems and future recommendations.

TERMS OF REFERENCE

a.  The impact of boundaries of NDIS and non-NDIS service provision on the demand for NDIS
    funding, including:
             i.    the availability of support outside the NDIS for people with disability (e.g.
         community-based or ‘Tier 2’ supports), and
            ii.    the future of the Information, Linkages and Capacity Building grants program;

Of peak concern readily evident within public community mental health service provision is the absence of medium-long term psychosocial support options for people living with a mental health condition. What is currently available is state funded short-term psychosocial supports (early intervention; goal oriented personal recovery programs extending 6-24 months service provision); and community networks that are inaccessible and present multiple barriers to participation for people with significant mental health conditions.

Implications of this dearth in medium -long term psychosocial supports: - People are accessing the scheme when they otherwise could continue positively on a recovery trajectory across 2-10 years with non-NDIS supports. Scheme access is counterproductive in the recovery journey if one is prematurely accepting that they have a permanent and significant lifelong functional impairment. Premature acceptance of permanent, lifelong, significant functional impairment in mental health recovery is a contributing factor to self- stigma that impacts on recovery gains. - Premature access to the scheme negatively impacts on scheme sustainability. If available, people could otherwise access alternatively funded and more cost-effectively delivered 2-10 year psychosocial support programs that assist people to learn new ways of doing, being and

becoming within their community.

Access to 2-10 year supports may thereafter enable people to develop compensatory strategies against functional impairment that would potentially not require lifelong significant support via an NDIS model of support.

RECOMMENDATION: NDIA and federal, state and territory governments negotiate adequate funding for non-NDIS funded pathways for medium-long term psychosocial disability supports for people with significant functional impairment. These supports would be funded to work collaboratively with mainstream services to deliver supports to people with acute symptoms, mental health risk, and impaired cognitive function prohibiting goal setting.

b.  The interfaces of NDIS service provision with other non-NDIS services provided by the
    States, Territories and the Commonwealth, particularly aged care, health, education and
    justice services;

Interface with mainstream services does not currently occur collaboratively. More often than not it occurs combatively when there is disagreement as to who is responsible for funding supports where care context is complex with co-occurring acute medical treatment and long-term disability support needs. Mainstream mental health services that are delivered in both hospital and community care would like to hold optimism in the vision of collaborative negotiations of complex needs when there are policy black spots and grey spots. This vision would see prevention of delays and gaps in service therefore mitigating the current impact of said delays/gaps - increased acuity of illness, preventable secondary or exacerbated functional impairment and consequent hopelessness and loss of self-efficacy in the participant.

RECCOMENDATION: See below.

 c.  The reasons for variations in plan funding between NDIS participants with similar needs,
     including:
             i.    the drivers of inequity between NDIS participants living in different parts of
            Australia,
            ii.   whether inconsistent decision-making by the NDIA is leading to inequitable
            variations in plan funding, and
            iii.   measures that could address any inequitable variation in plan funding;

NDIA delegates and Partners in the Community requir further education on those conditions that are often maligned and disadvantaged within the scheme to date (as per the Tune Review). For psychosocial disabilities this would require a general understanding of how symptoms of illness prevent people from effectively engaging in the planning and implementation process without adequate advocacy. Furthermore, that delegates and Partners in the Community are often not aware of the reasons why some diagnostic cohorts may not have the natural support networks in place to assist them nor the insight as to the need for such advocacy. It is evident that NDIA delegates and Partners in the Community neither understand nor value the roles and responsibilities of mainstream services beyond the Applied Tables of Responsibilities. A collaborative understanding would extend into knowledge of mainstream services as pivotal stakeholders who are able to provide clinical evidence and expertise around functional impairment and advocate for clinically informed, sustainable NIDS plans. When participants have mental health clinicians from mainstream services invited to attend and constructively collaborate across pre-planning, planning and implementation phases of NDIS, participants receive higher quality plans that support wellness and reduce relapse and readmission to acute care.

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funded to adopt this additional body of necessary NDIS advocacy work. This could be effectively supported with the colocation of CSNB delegates and LAC’s within mainstream health care services for diagnostic cohorts known to be disadvantaged by the schemes infrastructure to date i.e. forensic mental health services; long stay psychiatric hospitals.

CASE EXAMPLES

The following clinically informed fictitious case examples attempt to capture both the problems and opportunities for future scheme development in relation to plan inequity and interface with mainstream services.

Case example 1:

John is 43year old male living in state housing. He has paranoid schizophrenia and has received mental health treatment as both an inpatient and in the community for the past 25 years. John has experienced childhood trauma; poverty; homelessness; addiction; long term unemployment; social and familial isolation. It has taken Johns clinical team in a public mental health clinic, 18 months to counsel John on the benefits of accessing NDIS due to his paranoia and distrust of a government who placed him in state care at a young age that proved to be an unsafe environment. Johns NDIS planning meeting was conducted over the phone. A phone meeting transpired because John didn’t attend his scheduled appointment which he wasn’t aware of- he is too paranoid to check his mailbox regularly and he has no access to technology aside from intermittent PAYG phone credit. When the LAC asked John what his goals were John said he had none. When the LAC persisted asking John what he would like to do each day John stated he wanted to be able to go to the deli every other day to buy smokes. John received 3 hours of community access support to assist him to go to the local deli 2x weekly. John continues to be socially excluded due to his mental health condition impairing his cognitive executive function resulting him not regularly showering; eating or attending to his bills and medical appointments. His community mental health case manager is an occupational therapist who requested (with consent) to be included in the planning meeting but was not informed of the time or date nor patched into the phone interview. The case manager is now contributing excessive hours (not accounted for in mainstream services workload) to request a plan appeal, but John is not consenting to her submitting this on his behalf. Johns ability to have hopes, aspirations and articulate goals are all impaired by his illness and further reinforced by his marginalisation, stigma and self-stigma. Six months have passed since plan start date and John hasn’t received any support because he is not aware that he needs to choose a provider and has no means or capacity to do so on his own. His case manager offers to assist but John has lost interest in the scheme.

Case example 2:

Tanesha is a 37 year old lady who is transient in the region living with friends or family intermittently. She is a Wadjuk women of the Noongar nation. She has paranoid schizophrenia and has been involved in public mental health services since she was 16 years old. Taneesha has experienced intergenerational trauma of stolen generations, stolen wages; childhood trauma and removal; poverty; homelessness; addiction; long term unemployment; social and familial isolation. It has taken two years to counsel Taneesha to access NDIS due to government distrust and transiency. A Local Area Coordinator who attends the mental health clinic every week was able to meet with Taneeshas and the case manager on several occasion to discuss the scheme and concerns she had. The LAC was able to paint a picture of a brighter future that may be funded on the basis of discussions with the clinical team, as Taneeshas had consented. This same LAC was then able to facilitate pre-planning and planning meetings with Taneeshas and her case manager and Aboriginal Health worker across 3 sessions all at the community mental health clinic Taneeshas attends weekly for medication. Taneeshas plan addresses goals to live in supported accommodation and complete training to be an aboriginal support worker in childcare. The LAC is building her knowledge and understanding of how to effectively engage with people who are actively symptomatic with mental health conditions.

R. Langmead; BSc Occupational Therapy; MA Community Development 3

Case Example

Case example 3: Ben is 32 year old who lives on his parents property in a granny flat rent free. Ben has paranoid schizophrenia and has been involved in mainstream mental health services since he was 16. He has typically needed hospital treatment every 8 months when his symptoms are in an acute phase. Ben has both positive and negative symptoms severely impacting on his cognitive executive function – planning, decision making, insight, reasoning, organisation. Ben’s mum is a health professional, his Dad is a lawyer. Ben met access to the NDIS immediately after the scheme was rolled out in his region. His parents requested supporting clinical documentation from the community mental health service and collated Bens access request on his behalf. Ben consented to his parents being correspondence nominees – allowing them to assist Ben to attend and respond to access and planning appointments in addition to ensuring they were available to attend as Ben’s carers. Ben’s parents ensured that the mental health case managers reports were read by the LAC and ensured the case manager was teleconferenced into plan review meetings. Case managers have worked collaboratively with Ben and his family and are relieved that the bulk of NDIS administration and navigation tasks has been adopted by Bens family, as Bens capacity is limited. Ben has an effective NDIS plan that has seen him improve in self-care, meal planning and attempting a vocational training program; consequently, his illness relapse cycle has reduced in frequency. Ben will likely remain involved with community mental health services for medication reviews, but he has not had a hospital admission in the three years since accessing the scheme.

RECCOMENDATIONS: It is proposed that measures to address inequity in plan funding include - targeted efforts to engage collaboratively with mainstream mental health service providers using initiatives that include colocations and collaborative planning meetings. - Education and support for NDIA Delegates and Partners In the Community to approach access and planning meetings with higher degree of knowledge on how the diagnosis and functional impairment will impact on a participants ability to effectively engage in the NDIS access, planning, plan implementation, review and appeals process. - Funding mainstream mental health services to support their role as essential clinical stakeholders in the NDIS.

d. How the NDIS is funded, including: i. the current and future funding sources for the NDIS, ii. the division of funding between the Commonwealth, States and Territories, and iii. the need for a pool of reserve funding;

Referred to in section “h. Other related matters”

e.  Financial and actuarial modelling and forecasting of the scheme, including:
             i.    the role of insurance-based principles in scheme modelling, and
            ii.    assumptions, measures, and methodologies used to forecast and make projections about the scheme, participants, and long-term financial modelling;

Not addresses by this submission

  f.  The measures intended to ensure the financial sustainability of the NDIS (e.g. governance,
    oversight and administrative measures), including:

Not addresses by this submission

g. The ongoing measures to reform the scheme including: i. the new early childhood approach, including whether or how early intervention and other supports intended to improve a participant’s functional capacity could reduce their need for NDIS funding, and ii. planning policy for personalised budgets and plan flexibility; and

Referred to in section “h. Other related matters” h. Any other related matters: The failure of ILC Funding to address core barriers to social and economic inclusion of people with psychosocial disabilities and scheme sustainability.

Whilst an NDIS market strategy responds to the demand for individual choice and control, it narrows the national disability policy discourse to a focus on the individual’s impairments, neglecting the wealth of research that supports disability as a construct embedded in the ecological model. The ecological model supports a policy paradigm that directs intervention not just at the individual level but also at the social, economic, systemic and political environments that the person lives within. Market-based approaches are effective in delivering tailored services, but they also place the onus of responsibility on the individual living with the impairment (Christiansen, 2017; Esposito & Perez, 2014; Sakellariou & Rotarou, 2017). This allows broader society to defer all responsibility to the individual for functional impairments that are constructed by the external environment. It is therefore important to pay greater focus on how and what is being funded within Information Linkages and Capacity Building scheme components.

Mental health literature clearly and consistently identifies the community within which people live as a primary resource for promotion, prevention and treatment (Min, Lee, & Lee, 2013). The most current iteration of best practice within mental health treatment is the recovery model, which draws attention to how mental illness interacts with the broader environment (Commonwealth of Australia, 2013). The interpersonal nature of recovery is emphasised by Price-Robertson, Obradovic, and Morgan (2017), who further assert the need for future mental health service delivery to have greater emphasis on the environmental context beyond the individual. An individualised funding model that assesses functional impairments decontextualized from the ecological environment, will be inadequate for mental health recovery.

Stigma constructs an environment that exacerbates the functional impact of psychiatric symptoms. Stigma and discrimination associated with mental illness creates a vicious cycle of exclusion as people with a mental health condition do not seek to engage with various roles as they believe they are not deserving of certain rights and opportunities. There is a wealth of evidence validating the fact that R. Langmead; BSc Occupational Therapy; MA Community Development 5

people with mental health conditions regularly experience stigma, prejudice and discrimination

(Drake et al., 2012; Evans-Lacko, Brohan, Mojtabai, & Thornicroft, 2012). Stigma leads people to judge another as illegitimate, followed by actions that exclude others from social participation (Brohan, Slade, Clement, & Thornicroft, 2010). We know that some psychosocial disability participants may experience improved social and economic participation via provision of support workers and access to education, but understanding the role of stigma causes us to critically consider that these participants are not necessarily going to experience social and economic inclusion as a result.

Distinguishing between participation and inclusion is perhaps the point at which we can delineate policy options that are ‘most efficient’ in reducing the impact and cost associated with psychosocial disability. Therefore, whilst there is some evidence that NDIS can deliver a better life for psychosocial disability participants, it cannot do so efficiently without addressing how stigma and self-stigma result in the consistent absence of advocacy and brokerage resources to support participants (effectively voiding the scheme’s goal of participant control); and fundamental barriers to economic and social inclusion. In addition, market mechanisms are negatively impacting on choice (coercion; cherry picking participant plans) resulting in a more costly service delivery model and arguably impinging on the goal of ‘better lives’.

Reduced citizenship participation of people living with a disability should not be viewed as a problem belonging to people with disabilities, it is essential to focus attention on the environment within which the person lives which restricts citizenship. Phillips and Berman (2001, p. 24) describe the interaction between the environmental factors and citizenship rights as “the granting and maintenance of community citizenship rights is conditional upon community’s social quality, particularly with respect to the interaction of community social inclusion, social cohesion and empowerment”. What would it mean for the dominant majority to hold social citizenship responsibilities to remove barriers to participation in civic life for people with a disability? Citizenship outcomes within the NDIS should be discussed not from the perspective of the person living with a disability but from the perspective of community members more broadly.

Despite NDIA recognising that ILC will contribute to sustainability of the scheme (National Disability Insurance Agency, 2015), the delay in actioning ILC policy aspects in conjunction with minimal budgetary allocation (less than 10% actual expenditure as per the Productivity Commission) indicates that no more than a perfunctory value has been placed on addressing ecological drivers. It is pertinent to note that ILC funding is not for psychosocial disability alone but for all disabilities, making the expenditure impact in psychosocial disability negligible. Not only would greater emphasis on environmental barriers to social and economic inclusion result in greater impact and sustainability of outcomes for eligible psychosocial disability participants, but it would result in greater economic benefit for society as a whole.

It is important to understand that the NDIS does not stand alone; it is referred to within the Fifth National Mental Health & Suicide Prevention Plan as a complimentary policy measure. This current NMHP clearly identifies the need to reduce stigma and discrimination however the government has invested $338.1 million across four years into policy that supports funding of individual services and supports, primarily frontline clinical services, with a focus on eating disorders and suicide prevention (Australian Government, 2018b; Commonwealth of Australia, 2017). Within the plan there are no clearly identified actions associated with the aim of reducing stigma and discrimination in the broader community, with direct action items limited to the promotion of peer workforce and reducing stigma and discrimination within the health workplace (Commonwealth of Australia, 2017). Consequently, there is no significant financial commitment within the NDIS or independent of the NDIS to support

social and economic inclusion via an ecological policy framework.

This will potentially result in 91% of Australians living with a mental health condition continuing to be affected by the influence of stigma, self-stigma and discrimination.

RECCOMEDNATIONS:

 -   ILC funding should seek to explore the role of the dominant majority who construct the

economic environment within which people with a disability live, and the role of policy as a citizenship mechanism in the redistribution of resources, power and responsibilities. - greater funding be directed towards community capacity building within ILC, and greater emphasis on ecological drivers of impairment within psychosocial disability, the NDIS investment would benefit not just those eligible but also those ineligible, resulting in greater net economic impact across health, employment, housing and justice sectors.

NB: Further exploration of the response given in section “h. Any other related matters” can be found here: Langmead, Ruth (2018) The National Disability Insurance Scheme (NDIS) and mental health: A policy analysis. Masters by Coursework thesis, Murdoch University.

Prepared by:

Ruth Langmead Senior Occupational Therapist & NDIS Community Development Officer R. Langmead; BSc Occupational Therapy; MA Community Development 7