Recommendations for improving psychosocial disability support within the NDIS

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The Royal Australian & New Zealand College of Psychiatrists

25 May 2020

The Hon Kevin Andrews, MP Chair Joint Standing Committee on the National Disability Insurance Scheme

By email to: ndis.sen@aph.gov.au

Dear Mr Andrews

Re: Submission to the inquiry into general issues around the implementation and performance of the NDIS

The Royal Australian and New Zealand College of Psychiatrists (RANZCP) welcomes the opportunity to provide input into the Joint Standing Committee’s inquiry into general issues around the implementation and performance of the National Disability Insurance Scheme (NDIS).

The RANZCP is the principal organisation representing the medical specialty of psychiatry in Australia and New Zealand and is responsible for training, educating and representing psychiatrists on policy issues. The RANZCP represents more than 6700 trainee and qualified psychiatrists in Australia and New Zealand and is guided on policy matters by a range of expert committees, including the Section of Psychiatry of Intellectual and Developmental Disabilities and the Community Collaboration Committee. As such, the RANZCP is well positioned to provide assistance and advice about this issue due to the breadth of academic, clinical and service delivery expertise it represents, including community members and those with lived experience.

The RANZCP recognises the importance of the NDIS in supporting people with disability to achieve greater independence. We commend the ongoing strides taken by the National Disability Insurance Agency (NDIA) for continuous improvement of the NDIS since its implementation (1). The RANZCP recognises the NDIA’s commitment to continuous improvement which is evident in the creation of the NDIA Mental Health Sector Reference Group which allows stakeholders, including the RANZCP, to share experiences and feedback which work towards strengthening outcomes for people with psychosocial disability.

It has been recognised that the size and scope of the NDIS created a challenging landscape for disability service reform and the intersections and roles of different government sectors require further clarification for some stakeholders (2). Identifying and addressing the gaps between government agencies which might be impacting on service delivery and implementation is important for delivering holistic care for people with disability.

As such, the RANZCP has identified some key areas in the attached submission which are aimed at strengthening outcomes for people with psychosocial disability, including those who are eligible for the NDIS and for those who are not. These key areas include:

309 La Trobe Street, Melbourne VIC 3000 Australia
T +61 3 9640 0646 F +61 3 9642 5652
ranzcp@ranzcp.org www.ranzcp.org
ABN 68 000 439 047

The Royal Australian & New Zealand College of Psychiatrists

  • Ensuring NDIS processes best reflect the fluctuating nature of psychosocial disability and support a model of recovery is essential for providing positive experiences for NDIS participants with mental health conditions.
  • Providing medical professionals with dedicated communication resources could better assist streamlining access for people with disability especially given the important role medical professionals play in providing evidence and facilitating access to the NDIS.
  • Acknowledging the intersection between health and disability is imperative in improving the experience of people with disability with the NDIS.
  • Ensuring long term disability support services are available and easily accessible to vulnerable groups and to those who are not eligible for NDIS assistance.

Please see further feedback in the attached submission, noting several areas suggested for further consideration by the Joint Standing Committee.

If you would like to discuss any of the provided feedback, please contact Rosie Forster, Executive Manager, Practice, Policy and Partnerships via redacted or by phone on redacted

Yours sincerely

Associate Professor John Allan President

References

  1. National Disability Insurance Agency. Report to the Council of Australian Governments Disability Reform Council for Quarter 4 of Year 6 Full Report. 2019.
  2. Tune D. Review of the National Disability Insurance Scheme Act 2013: Removing red tape and implementing the NDIS Participant Service Guarantee. 2019.

The Royal Australian & New Zealand College of Psychiatrists

Joint Standing Committee on the National Disability Insurance Scheme

General issues around the implementation and performance of the National Disability Insurance Scheme

May 2020

Improve the mental health of communities

309 La Trobe Street, Melbourne VIC 3000 Australia
T +61 3 9640 0646 F +61 3 9642 5652
ranzcp@ranzcp.org www.ranzcp.org
ABN 68 000 439 047

Contents

About the Royal Australian and New Zealand College of Psychiatrists ……………………………………………. 2

  1. Introduction …………………………………………………………………………………………………………………. 3
  2. Recommendations ……………………………………………………………………………………………………….. 4
    i. Eligibility and access …………………………………………………………………………………………………….. 6
    ii. Assessment ………………………………………………………………………………………………………………… 7
    iii. Planning ……………………………………………………………………………………………………………………… 8
    iv. Service provision ………………………………………………………………………………………………………….. 9
    v. Emergency planning …………………………………………………………………………………………………….10
    vi. Resourcing for medical professionals ………………………………………………………………………………11
    vii. Communication ……………………………………………………………………………………………………………11
    viii. Referral pathways ………………………………………………………………………………………………………..12
    ix. Advocacy and carers …………………………………………………………………………………………………….12
    x. Vulnerable populations ………………………………………………………………………………………………….13
    Aboriginal and Torres Strait Islander people ……………………………………………………………………………13
    Culturally and linguistically diverse populations ………………………………………………………………………..13
    People with intellectual and developmental disability ………………………………………………………………..13
    People living in rural and remote areas …………………………………………………………………………………..14
    People in custodial or forensic services ………………………………………………………………………………….14
    Autism Spectrum Disorder ……………………………………………………………………………………………………14
    Attention Deficit Hyperactivity Disorder …………………………………………………………………………………..15
    Older people with disability …………………………………………………………………………………………………..15
    Homeless people with disability …………………………………………………………………………………………….16
    People with disability who are pregnant or have recently given birth ……………………………………………16
  3. Conclusion ………………………………………………………………………………………………………………….16
  4. References …………………………………………………………………………………………………………………17

Royal Australian and New Zealand College of Psychiatrists submission | Page 1 of 18

About the Royal Australian and New Zealand College of Psychiatrists

The Royal Australian and New Zealand College of Psychiatrists (RANZCP) is a membership organisation that prepares doctors to be medical specialists in the field of psychiatry, supports and enhances clinical practice, advocates for people affected by mental illness and advises governments on mental health care. The RANZCP is the peak body representing psychiatrists in Australia and New Zealand and as a bi-national college has strong ties with associations in the Asia-Pacific region.

The RANZCP has over 6700 members including more than 5000 qualified psychiatrists and around 1700 members who are training to qualify as psychiatrists. Psychiatrists are clinical leaders in the provision of mental health care in the community and use a range of evidence-based treatments to support a person in their journey of recovery.

The RANZCP welcomes the opportunity to contribute to the Joint Standing Committee on the National Disability Insurance Scheme (NDIS) inquiry on general implementation and performance of the NDIS.

The recommendations contained within this submission are based on extensive consultation with several RANZCP Committees including:

  • Section of Psychiatry of Intellectual and Developmental Disability
  • Section of Private Practice Psychiatry
  • Faculty of Child and Adolescent Psychiatry
  • Section of Perinatal and Infant Psychiatry
  • Faculty of Adult Psychiatry
  • Faculty of Addiction Psychiatry
  • Practice, Policy and Partnership Committee
  • Committee of Evidence-based Practice
  • Community Collaboration Committee

These committees are made up of psychiatrists and community members with direct experience of engaging with the NDIS. As such, the RANZCP is well positioned to provide assistance and advice about this issue due to the breadth of academic, clinical and service delivery expertise it represents.

Key messages

Ensuring NDIS processes best reflect the fluctuating nature of psychosocial disability and support a model of recovery is essential for providing positive experiences for NDIS participants with mental health conditions.

  • Providing medical professionals with dedicated communication resources could better assist streamlining access for people with disability especially given the important role medical professionals play in providing evidence and facilitating access to the NDIS.
  • Acknowledging the intersection between health and disability is imperative in improving the experience of people with disability with the NDIS.
  • Clarifying the intersection and roles of different government sectors for stakeholders is required.
  • Ensuring long term disability support services are available and easily accessible to vulnerable groups and to those who are not eligible for NDIS assistance.

Royal Australian and New Zealand College of Psychiatrists submission | Page 2 of 18

1. Introduction

The RANZCP commends the National Disability Insurance Agency (NDIA) on its ongoing efforts to improve the NDIS. We continue to actively engage in this effort including contributing submissions to previous consultations on the NDIS, such as the NDIS Act Review and Participant Service Guarantee (also known as the Tune Review).

The RANZCP welcomes the release of the Tune Review Report especially highlighting psychosocial disability as a primary area for continued improvement within the NDIS, recognising the limitations current NDIS legislation places on the psychosocial disability service delivery response (1).

The World Health Organisation describes disability as the interaction between individuals living with a health condition and the personal and environmental factors which are experienced as a result of that condition, such as stigma or inequitable access to services and support (2). The RANZCP maintains that acknowledging the significant intersection between health and disability is imperative in improving the outcomes of NDIS participants (3).

The fluctuating and transitory nature of mental illness makes implementation of the psychosocial stream challenging and the RANZCP recognises the NDIA’s continual efforts in this space, especially training of NDIA and service provider staff to better support people with psychosocial disability (4). However, the significant amount of unspent NDIS funds is concerning as an indicator of gaps and inaccessibility that remains for people with disability due to confusion over processes.

Alongside our key findings, the RANZCP has identified several areas of opportunity of improvement for the NDIS including:

i. Eligibility and access criteria for psychosocial disability into the NDIS require changes to terminology that better recognise the recovery model, the fluctuating nature of psychosocial disability and the importance of medical professionals in this process. ii. Assessment processes require further streamlining, including the use of evidence-based frameworks which will provide better clarity to medical professionals and allow participants to have a more holistic view of their functional needs. iii. Planning processes in the NDIS should better involve medical professionals to encourage provision of consistent wrap-around support between health and disability services for participants. iv. Service provision frameworks are necessary to ensure quality and safety of participants is being addressed including appropriate training for support service staff and avenues for dispute resolution between service providers and medical and health professionals. v. Emergency planning is required for NDIS participants to ensure continuity of service provision regardless of the external environment. vi. Resourcing of medical professionals undertaking assessments for the NDIS is currently problematic, with resourcing being unrepresentative of the time required to complete documentation and reports. vii. Communication resources are required to highlight the specific role of each medical professional in each process, such as psychiatrists. viii. Awareness of referral pathways has changed considerably with the advent of the NDIS and resources which provide psychiatrists with alternative referral avenues would be beneficial. ix. Vulnerable populations require ongoing support to ensure they can access the NDIS as required.

Recommendations against each of these opportunities for further development are detailed overleaf.

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2. Recommendations

The RANZCP urges the Committee to include the following recommendations for strengthening implementation and performance of the NDIS. The evidence for these is included in the following sections of this submission.

i. Eligibility and access

  • Provide opportunities for participants to retain funding for supports which are flexible and responsive to crises to ensure access is available when it is needed due to the fluctuating nature of psychosocial disability.
  • Provide opportunities for medical professionals to engage with NDIA staff with medical/clinical experience to develop better understanding between the disability and health sector (5), such as offering a help desk staffed with people with knowledge of the disability and health systems.
  • Draft supporting resources aimed at health professionals which translate NDIS terminology into language which is better aligned to the clinical model (5).

ii. Assessment

  • Clarify evidence requirements for the psychosocial stream by providing a publicly available template outlining the exact requirements of assessment (5).
  • Publish resources which are aimed at medical professionals which could then be available in an easily accessible location, such as the NDIS website (e.g., detailed information on functional assessment tools, templates for evidence provision, referrals, etc.) (5).
  • Fund medical practitioners to undertake assessments for people seeking access to the NDIS particularly those who face financial hardship.

iii. Planning

  • Develop processes to include medical professionals in NDIS planning to ensure more holistic care and support is provided to participants (5).
  • Ensure all support staff working for service providers are properly trained in understanding mental health conditions, their fluctuating nature, and are able to create flexible plans based on an individual’s circumstances (6).

iv. Service provision

  • Provide further clarity around becoming a service provider (including if psychiatrists are eligible) (7).
  • Develop avenues for better sharing of information and coordination of support between health professionals, the NDIA and service providers including formal avenues of resolution when medical professionals have different views with service providers over patient/NDIS participant care.
  • Ensure all support staff working for service providers are properly trained and remunerated (6).
  • Undertake mapping of available services by type and location to assist in addressing service gaps.

v. Emergency planning

  • Develop a continuity plan for NDIS participants in response to future emergency’s in consultation with states and territories, service providers and people with lived experience.

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vi. Resourcing of medical professionals

  • Work with the health sector to ensure adequate resourcing exists for medical professionals assisting people wishing to access the NDIS to ensure better outcomes for NDIS participants/people with psychosocial disability (7).

vii. Communication

  • Provide a clearly identified section on the NDIA website for healthcare professionals which outlines their roles and responsibilities for both the physical and psychosocial (mental health) streams (7).
  • Provide communication tools (based on profession) outlining each health professions role in the NDIS across its lifespan (eligibility, assessment, planning, and ongoing interaction) (7).
  • Ensure NDIA contacts with clinical expertise are available to health professionals to assist with queries or questions they may have about the NDIS process such as a help desk, for example.

viii. Referral pathways

  • Develop a referral pathway search on the NDIS website to assist psychiatrists and other medical professionals in locating appropriate referral services based on location and type of service required including those who are not eligible for the NDIS (7).

ix. Advocacy and carers

  • Increase the number of, and funding for, advocacy services for people with disabilities in urban, regional and rural areas, including greater promotion of these services (8).
  • Provide more opportunities for respite for caregivers.

x. Vulnerable populations

  • Development of a comprehensive outreach NDIS strategy for engaging with people with disability from vulnerable populations (1).
  • Increase access to interpreters for people with disability who identify as Culturally and Linguistically Diverse (CALD) to help them navigate the NDIS including providing resources in a variety of languages in accessible language which is publicly available (9).
  • Establish specialist disability services to address service gaps for people with complex and challenging behaviours including within the custodial/forensic sector (10).
  • Identify opportunities with people living in rural and remote areas to ensure NDIS processes fit better within the rural and remote health context.
  • Streamline bureaucratic processes which prohibit or interfere with people with intellectual and developmental disability leaving forensic services without obtaining a NDIS plan before release, which should include appropriate housing and ongoing mental health care and support (10).
  • Engage further with psychiatrists on functional assessment tools to ensure the complexities and intersections within an Autism Spectrum Disorder (ASD) assessment are acknowledged to ensure better accuracy for those with ASD seeking to access the NDIS.
  • Identify clearly on the NDIS website if people with Attention Deficit Disorder are eligible to access the NDIS.
  • Commit to retaining similar long-term disability services for older people who will lose access to certain services under the NDIS rollout including clearer communication of alternative referral pathways to medical professionals.
  • Provide further funding to the homeless sector to ensure people who are homeless can access support to find housing and to facilitate better access to the NDIS and other services (11).

Royal Australian and New Zealand College of Psychiatrists submission | Page 5 of 18

  • Ensure planning is flexible to better allow people who are pregnant to access supports related to pregnancy and parenting.

i. Eligibility and access

The RANZCP has welcomed the addition of the psychosocial stream to the NDIS to include those with severe or persistent mental health conditions. However, psychiatrists have reported a lack of consistency when people attempt to access the NDIS, For example, psychiatrists note that patients who have experienced similar conditions and severity have had very different assessment outcomes. Mental Health Australia noted in its report on psychosocial disability pathways that health professionals report confusion of eligibility due to inconsistent information received from NDIA staff (5). While acknowledging that the NDIS is a large scale reform with many elements, it is important a more robust process is developed to reduce inconsistencies and to reduce difficulties among psychiatrists when referring patients to the NDIS due to uncertainty of outcomes and eligibility and to circumvent negative impacts on the therapeutic relationship.

The RANZCP suggests that the number of participants with psychosocial disability for the NDIS may also need to be re-scoped. The Australian Institute of Health and Welfare data shows that around 2-3 percent of Australians, or 615,000 people, have a severe mental health condition (based on the estimated 2017 population) (12). While the RANZCP recognises that severity does not necessary impact on functionality, as per NDIS eligibility criteria, it does suggest that the small number scoped may not be truly representative of actual need. A further 1.2 million people have a moderate mental health condition, some of which, it is anticipated, would also require support and services for day-to-day functioning (12).

The language used around disability is very important, and can be a significant barrier to full participation in society for people with disability (13). Similarly, language used by the NDIS is also a barrier for people with disability accessing and participating in the NDIS (9). The RANZCP would welcome changes to the language used by the NDIS to better reflect the experiences of people with psychosocial disability as an important acknowledgment of the intersection between mental health and disability including helping fight against stigma. In applying for the NDIS a person with psychosocial disability may feel they are ‘giving up’ and accepting that they will never recover, acknowledging their disability as permanent, in line with NDIS eligibility criteria. However, changes to this wording, using ‘persistent’, for example, instead of ‘permanent’ highlights a pattern of psychosocial disability but still allows hope for recovery (9).

Though there are many connections between ’disability and ‘health’, the differences in terminology and definitions between the two sectors can cause confusion for psychiatrists who work primarily in the clinical model. The RANZCP supports further clarification of terms and definitions to support psychiatrists in developing a deeper understanding of the NDIS (for e.g., the words ‘permanent’ and ‘recovery’ have different meanings in mental health and the NDIS context which creates confusion).

The Recovery Model, which promotes recovery as achievable, is often used in mental health care (14). The NDIS’ use of the word ‘permanent’, for example, may challenge beliefs that recovery is possible and, in referring a patient to the NDIS, implies a mental health condition is unlikely to change (15). For this reason, some psychiatrists have expressed concern people with psychosocial disability may not be accessing the NDIS due to uncertainty around terminology used by the NDIA and how it impacts their eligibility.

The use of the term ‘fluctuating’ by the NDIS also requires further investigation as to how the NDIA may better adapt processes to better assist those with mental health conditions. The nature of mental health conditions requires a flexible system which easily adapts to people’s circumstances. For example, a mental health crisis, resulting in reduced functionality, requires a quick response which is made difficult under the current process. People who experience long periods of recovery and wellbeing should also be able to have flexible funding which is available when needed. Balance between providing adequate

Royal Australian and New Zealand College of Psychiatrists submission | Page 6 of 18

and appropriate support and ensuring people remain hopeful of recovery and be as independent as possible is necessary to helping people have good outcomes in all areas of life.

The RANZCP hold concerns as psychiatrists have reported that access and eligibility and access to the NDIS is largely controlled by those who have persistent advocators assisting them. Member experience has consistently shown that people with psychosocial disability seeking to access the NDIS have better outcomes if they have a family member or advocator who can persist with engaging with the NDIA to support their application. This is of significant concern as many people who also have a genuine need, but lack resources will miss out on getting support. This also contributes to those in lower socioeconomic situations missing out on support as they do not have the financial resources available to them to pay for the supports required to apply to the NDIS.

The RANZCP notes the absence of alcohol and other drugs under the NDIS eligibility, also noting that substance use disorder was identified as the third most common mental health condition reported in the 2007 National Survey of Mental Health and Wellbeing (12). People with psychosocial disability are particularly susceptible to having issues with substance use (16) which may impact on everyday functioning.

Recommendations:

  • Provide opportunities for participants to retain funding for supports which are flexible and responsive to ensure access is available when it is needed due to the fluctuating nature of psychosocial disability.
  • Provide opportunities for medical professionals to engage with NDIA staff with medical/clinical experience to develop better understanding between the health and disability sector (5), such as a help desk staffed with people with understanding of the medical and health system.
  • Draft resources aimed at health professionals which translate NDIS terminology into language which is better aligned to the clinical model (5).

ii. Assessment

Psychiatrists have a key role in assisting people with psychosocial disability to access the NDIS through the provision of evidence to the NDIA. However, RANZCP members have reported the need for more information about their role including the absence of information resources for psychiatrists in this space. Several areas which require further clarity for psychiatrists include:

  • the evidence required by the NDIA when assessing patients for the NDIS
  • the role of psychiatrists in supporting patients who require assistance in completing the assessment forms as, in some cases, when psychiatrists have assisted completing the form, this has led to a breakdown of the therapeutic relationship in cases where the patient’s application has been rejected, and
  • the functional assessment tools used by the NDIA.

The assessment process has created an awareness of opportunities for increasing psychiatrist knowledge in how to assist people wishing to access the NDIS, particularly for psychiatrists who work primarily in private practice.

Issues around advocacy remain ongoing for all people with disability. For example, people with intellectual and developmental disability (people with IDD), in many instances, require a person known to them who can advocate for them in accessing the NDIS (17). Carers and support people play a large role in working with health professionals to help navigate the NDIS including in the assessment process. This is challenging for those without the necessary supports and who require considerable assistance in accessing and managing the NDIS. This is particularly relevant with the decrease in disability support services, with advent of the NDIS, who previously conducted advocacy efforts for these cohorts.

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The costs involved in applying to the NDIS may also be considerable for people with disability. Often when applying for the NDIS, people need to see a variety of health professionals with significant out-of-pocket costs. This can be prohibitive to accessing the NDIS and places those in vulnerable or lower socio-economic groups at a distinct disadvantage when attempting to access the NDIS.

Timeliness of assessment is critical as it significantly impacts on a person’s ability to function in the most general sense. Further, reports have suggested medical professionals have had to wait on NDIS packages being approved before they are able to release a patient from hospital, creating bed blocking.

Better understanding by NDIA staff of the complexities of disability and how that might affect functionality would also be beneficial in providing support for participants and people with disability. As a case study, a participant who has accessed the NDIS for a psychosocial disability, discussed that an occupational therapist would be coming to assess them. The occupational therapist was engaged to assess the participant’s home to see if they needed ‘bars and other things’, even though their application was for psychosocial disability, and the participant did not have a physical disability. The call for an assessment by an occupational therapist in this instance was a ‘tick box’ response to assessment and not one undertaken with understanding of actual need.

To assist with streamlining assessment, the RANZCP suggests a mapping of mental health conditions could be undertaken with relevant stakeholders. A framework of supports could then be created to assist assessors and planners in better understanding conditions, which would be evidence-based and lessen the subjectiveness of the process currently in place. This would also benefit medical and health professionals, providing a framework to create resources which could be used for assessment to the NDIS.

The fluctuating nature of many mental health conditions means that assessment of need will be required regularly as circumstances can change quickly. For example, during pregnancy a further assessment may be required to ensure daily support needs are met as this can be a potentially stressful time for the participant and their family, regardless of whether the NDIS participant is the parent or sibling.

Recommendations:

  • Clarify evidence requirements for the psychosocial stream by providing a publicly available template outlining the exact requirements of assessment (5).
  • Publish resources which are aimed at medical professionals which could then be available in an easily accessible location, such as the NDIS website (e.g., detailed information on functional assessment tools, templates for evidence provision, referrals, etc.) (5).

iii. Planning

The RANZCP acknowledges there is significant interaction between health and disability and, in this sense, believes that there is a real role for psychiatrists in working with the NDIS to ensure better outcomes for participants and people with psychosocial disability.

Processes which allow for, and encourage, more engagement with medical professionals in planning process would ensure a more holistic view is undertaken to improve participant health and wellbeing. It would also help medical professionals better understand the supports participants are receiving and allow for better healthcare provision. For example, psychiatrists have reported instances of treating patients in hospital and the struggle to obtain knowledge of NDIS supports and plans, significantly influencing and potentially delaying, release plans. In cases where mental health conditions come to a crisis point quickly, it is important that sectors can work together to ensure consistent and holistic care can be provided. Better communication between the NDIA, service providers and medical professionals, as well as including medical professionals in planning, will assist in ensuring patients and participants receive better care.

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The fluctuating nature of mental health conditions requires a flexible system which easily adapts to people’s circumstances, for example, a mental health crisis requires a quick, coordinated response which is made difficult under the current process. People who experience long periods of recovery and wellbeing should also be able to have flexible funding which is available when needed, and not have funding removed because it has not been required to date.

The RANZCP recognises that service provider support staff are an important part of the NDIS. Ensuring all support staff are properly trained and remunerated helps ensure people with disability have quality support plans. The inclusion of an Occupational Therapist, as mentioned in the above example, highlights that planners may require further information and education in undertaking their role to ensure more efficient and targeted plans are created.

NDIS planning for people with a mental health condition may require flexible quarterly planning, for example, rather than an annual planning model, to better suit the fluctuating nature of their condition. People with psychosocial disability may struggle to access services at times when their mental health condition is worsening, when support is needed. This is particularly relevant for women who are pregnant or have recently given birth, who may require additional supports to meet their needs.

Recommendations:

  • Develop processes to include medical professionals in NDIS planning to ensure more holistic care and support is provided to participants (5).
  • Ensure all support staff working for service providers are properly trained in understanding mental health conditions, their fluctuating nature, and are able to create flexible plans based on an individual’s circumstances (6).

iv. Service provision

The RANZCP recognises that service providers are a unique element of the NDIS, with disability services having transitioned from a block funding model under the previous system to individualised funding under the NDIS (18). While individualised service provision provides key services to support people with disability, service provision is an area of the NDIS which remains unclear to many psychiatrists and clarity as to whether psychiatrists are eligible to become service providers is needed given that psychiatrists also provide psychosocial care.

Service providers under the NDIS play a large role in the decision-making process undertaken by participants and this can impact clinical care. Differing assessments between NDIS service providers and medical professionals over patient care can be problematic as people with mental health issues are often vulnerable and may be suggestable. Members note case studies where a service provider has recommended alternative therapies to participants, disregarding clinical advice of the long-term psychiatrist, leading to patients discontinuing long term therapeutic care, and organising unnecessary assessments.

While the RANZCP appreciates that the NDIS is individual centred to best meet the needs of participants, members have expressed concern that this can impact the sharing of information between the NDIS, service providers and medical professionals. Medical professionals are often unaware of details of patient plans, and subsequently, of service provider supports under the NDIS, which can have an impact on patient health care and planning. This is also a missed opportunity to ensure participants are provided holistic care and support in achieving their identified goals.

Service provider support staff are an important part of the NDIS. However, skills and competencies of support staff varies widely. Ensuring all support staff are properly trained and remunerated helps ensure people with disability are receiving quality care. For example, people who have had encephalitis might, as a result of this illness, have mental health conditions which impact on their daily functioning. However,

Royal Australian and New Zealand College of Psychiatrists submission | Page 9 of 18

many staff have no understanding of this condition, including its effect on support requirements and functioning, which has negative impacts on the individual.

Psychiatrists who work with people with IDD advise that they have been questioned over prescriptions by service providers in accommodation settings in instance where participants are assisted to take their medication. Service providers have advised that this is due to NDIA requirements, seeking explanations for prescription purpose and requiring extensive documents to be completed. Some psychiatrists have noted that sometimes due to this requirement some NDIS participants do not receive their medication due to issues with NDIS paperwork.

As this is a health-related issue and not related to an area of NDIA expertise, the RANZCP would appreciate clarification regarding how this information is utilised by the NDIA, particularly as providing this information impacts on psychiatrist’s time and resources with the potential to cause issues for patients in cases where medication is delayed or ceased.

There remain opportunities for creativity and development of service provision in many areas especially supporting those with complex needs and child mental health. An assessment of available service providers regionally would be helpful in recognising and addressing the gaps with the potential for creativity in this space.

The RANZCP highlights the importance of appropriate remuneration to service providers, as many struggle to provide services to participants due to financial stress. This threatens to undermine the capacity of the sector to provide the support required.

Support provided by service providers can be very helpful, but the process of building trust and routine must be developed within the service provider model to help provide stability and sustainability to participants with mental health conditions.

People with long-term mental health conditions have found other ways to engage with the NDIS with some now using their lived experiences as services provider support workers. For those who are participants, some have required less clinical care due to the increase in supports provided through the NDIS which is a positive outcome to interactions with the NDIS.

Recommendations:

  • Provide further clarity around becoming a service provider (including if psychiatrists are eligible) (7).
  • Develop avenues for better sharing of information and coordination of support between health professionals, the NDIA and service providers including formal avenues of resolution when medical professionals are in disagreement with service providers over patient/NDIS participant care.
  • Ensure all support staff working for service providers are properly trained and remunerated (6).
  • Undertake mapping of available services by type and location to assist in addressing service gaps.

v. Emergency planning

The COVID-19 pandemic has highlighted several areas of opportunity for the NDIS especially around service provision. While it is noted that efforts have been made to support and protect people with disability during this time, the RANZCP recommends that a comprehensive, ongoing framework is developed to support NDIS participants, their support people and service providers. Given the sudden onset of disasters and emergency, a continuity plan, in collaboration with state and territories, could help ensure no participant loses services in the future.

Recommendations:

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  • Develop a continuity plan for NDIS participants in response to future emergency’s in consultation with states and territories, service providers and people with lived experience.

vi. Resourcing for medical professionals

The RANZCP acknowledges that the NDIS is a large-scale reform with many intricacies and complexities across various sectors and systems such as health, education, transport and housing. Such collaboration requires long term work to ensure a highly efficient system which meets the needs of stakeholders.

As part of the crossover between sectors, the remuneration process for medical professionals conducting NDIS assessments and providing further evidence for appeals should be reviewed. Members have expressed that there is currently significant uncertainty around the remuneration process for assessment consultations and appeals where additional evidence is required.

The intersection between the NDIS and health sector is unclear. The RANZCP has been advised that the Medicare Benefits Scheme (MBS) is able to be used for NDIS assessments, however, report writing for NDIS assessment and appeals does not have MBS items which cover these activities (19). Providing evidence by medical professionals of disability and function is an important part of the NDIS, assisting with access and planning for people with disability.

Additionally, cost may be a barrier for people with disability seeking to collect evidence to access the NDIS particularly services which are not covered by Medicare (1). The time and resources spent by psychiatrists and other medical professionals to assist patients to access the NDIS in the form of evidence provision can be intensive and strategies to address this gap requires additional investigation to further ensure best outcomes for patients/NDIS participants.

Psychiatrists have noted that this can extend to other documentation, for example completing forms on medication prescribed to a participant, which is also not covered by the NDIA.

Recommendations:

  • Work with the health sector to ensure adequate resourcing exists for medical professionals assisting people wishing to access the NDIS to ensure better outcomes for NDIS participants/people with psychosocial disability (7).

vii. Communication

Though psychiatrists play a role in the NDIS psychosocial process, there are currently no communication resources directed at psychiatrists. Member experience has reported that some psychiatrists, particularly those working in private practice, may have difficulty in obtaining information as they are unable to collaborate with other health professionals around NDIS processes, working more in isolation than those in the public sector. Effective communication is an important element of the NDIS and the RANZCP recognises and appreciates the strides the NDIA is undertaking to work with stakeholders in this area.

Information sharing is difficult even when participants have provided consent over the phone while in a psychiatrist consultation.

Recommendations:

  • Provide a clearly identified section on the NDIA website for healthcare professionals which outlines their roles and responsibilities for both the physical and psychosocial (mental health) streams (7).
  • Provide communication tools (based on profession) outlining each health professions role in the NDIS across its lifespan (eligibility, assessment, planning, and ongoing interaction) (7).
  • Ensure NDIA contacts with clinical expertise are available to health professionals to assist with queries or questions they may have about the NDIS process such as a help desk, for example.

Royal Australian and New Zealand College of Psychiatrists submission | Page 11 of 18

viii. Referral pathways

The landscape of mental health services, particularly community mental health services, has changed considerably since the advent of the NDIS. Many resources have been applied to reducing the gap between the NDIS and other disability support services and remain ongoing. However, some RANZCP members remain unclear on referral pathways for people not eligible for the NDIS, particularly for psychiatrists who work primarily in private practice and may not have direct access to networks which are familiar with NDIS processes and the larger disability sector. The lack of known referral pathways amongst psychiatrists may leave patients without a transparent and easily navigated pathway to mental health care and services and can be confusing for medical professionals.

Medical professionals may also have concerns that applying to the NDIS could cause further trauma due to the uncertainty and complexities in its navigation.

Recommendations:

  • Develop a referral pathway search on the NDIS website to assist psychiatrists and other medical professionals in locating appropriate referral services based on location and type of service required including those who are not eligible for the NDIS (7).

ix. Advocacy and carers

People with disability may find it difficult to negotiate the physical, social and political environment without assistance from others. This lack of access to the public sphere is a human rights issue and is the direct result of a world which excludes them from fully participating in the community (8).

The role of family and carers in advocacy for people with disability cannot be overstated. The need for advocacy through the entire cycle of the NDIS is crucial for people with disability to ensure their needs are met, such as working with health professionals during the assessment process. Families, friends and carers play a critical, but often overlooked, role in providing further context of challenges and needs faced by their loved one, liaising with support people to ensure better outcomes. Within the recovery model and with the fluctuating nature of psychosocial conditions, family and friends often provide crucial support in monitoring, identifying and assisting people during challenging times when they may be unable to make decisions or help themselves (3). Better support and involvement of carers in dialogue, where possible, can improve continuity and quality of support for people with disability (3).

The RANZCP has identified that respite for carers under the NDIS is inconsistently applied (20) and very difficult to obtain for carers who support people with challenging behaviour (10). The RANZCP members have advised that it is often not added to an NDIS package and when it is, the figure is lower than actual need for carers. While recognising the recent release of information around support for carers by the Department of Social Services, it is particularly important to ensure these programs are implemented and resourced successfully to support carers in their important role supporting people with psychosocial disability (21). In addition, addressing any gaps of respite for carers who have received respite services and will no longer be eligible also must be addressed to properly support carers and people with psychosocial disability.

The RANZCP acknowledges the need for advocacy can be particularly challenging for those with disability who do not have someone who can provide them with support and assistance or instances where carers or advocates do not work in the best interests of the person with disability. Advocates, or navigators, are required to assist hard-to-reach populations such as people in remote communities, people who identify as CALD and homeless people to access appropriate services such as disability support or the NDIS.

Recommendations:

  • Increase the number of, and funding for, advocacy services for people with disabilities in urban, regional and rural areas, including greater promotion of these services (8).

Royal Australian and New Zealand College of Psychiatrists submission | Page 12 of 18

  • Provide more opportunities for respite for caregivers.

x. Vulnerable populations

Aboriginal and Torres Strait Islander people

Aboriginal and Torres Strait Islander people with disability experience further layers of discrimination due to intersections of racism and disability. Lack of advocate support for Aboriginal and Torres Strait Islander people with disability can be prohibitive in facilitating access to the NDIS. In rural and remote areas, costs and distance to medical services associated with assessment for the NDIS may also prove prohibitive to access.

In many Aboriginal and Torres Strait Islander communities, the term ‘disability’ is not recognised or used (22) making the essence of the NDIS far removed from these communities and, in turn, the term, ‘disability’, has been a devaluing experience for some Aboriginal and Torres Strait Islander people. Aboriginal and Torres Strait Islander families are accepting and supportive of family members who have a disability and more work needs to be done in providing access for individuals in Aboriginal and Torres Strait Islander communities to have appropriate treatment. In addition, all support should be sustainable and not ad-hoc, as often occurs in regional and remote areas, given limited local services and visiting service providers forming a significant proportion of the workforce. Finding ways to better engage with Aboriginal and Torres Strait Islander communities can help ensure that people have an opportunity to find support through the NDIS.

Culturally and linguistically diverse populations

People with disability who identify as CALD are not a homogenous group, having a wide range of needs and experiences. It is estimated that people who identify as CALD access disability services at rates up to two thirds less than Australian born people, though there is a similar rate of disability (23). This includes access to the NDIS with some people who identifying as CALD being unaware of the NDIS existence (23).

Language is an important element of the NDIS and imperative for full and meaningful participation. Language used by the NDIS around disability and permanence can negatively impact people’s desire to access the NDIS which was a significant impact for people with disability who identify as CALD (9). Access can be further negatively impacted by lack of access to interpreter services. Having to rely on family or friends to provide interpreting services can prevent people with disability accessing the NDIS and can contribute to issues in receiving services. More time may be needed in consultation with health professionals, NDIA staff and service providers to help manage language barriers. Remuneration for this extended time needs to be taken into consideration.

Ongoing responsiveness is needed to ensure the NDIA continues to learn from stakeholders within the CALD community to better meet the needs of people with disability who identify as CALD (24).

Recommendations:

  • Increase access to interpreters for people with disability who identify as CALD to help them navigate the NDIS including providing resources in a variety of languages in accessible language which is publicly available (9).

People with intellectual and developmental disability

People with IDD experience high rates of mental health conditions. Though exact prevalence is unknown, in Australia it is thought that 57 percent of people with IDD have some kind of mental health condition (25).

The NDIA continues to make efforts to support people with IDD who have complex needs, however there are still challenges with ensuring this widely diverse group are able to access and use the NDIS as appropriate such as ensuring adequate services are available for people with challenging behaviour.

Royal Australian and New Zealand College of Psychiatrists submission | Page 13 of 18

Issues around advocacy remain ongoing (for all people with disability) and people with IDD, in many instances, require a person known to them who can advocate for them in accessing the NDIS (26). This is challenging for those without the necessary supports and will require considerable support to assist this group in accessing and managing the NDIS, particularly those who do not currently have people to advocate on their behalf.

People living in rural and remote areas

Health inequity is a significant issue in rural, regional and remote Australia with people in rural and remote areas experiencing poorer health and welfare outcomes than people living in metropolitan areas (27). In addition, people living with disability in rural and remote areas face further struggles due to health inequity then the general rural population. Often this is due to lack of health services in rural, regional and remote areas generally. However, lack of broader services such as public transport can also significantly impact on health care access as people with disability may rely on others for transport. People with disability in rural and remote Australia may also face stigma and discrimination over their mental health related disability which may negatively impact health care (28).

The RANZCP recognises that while the NDIS has proven benefits for many people with disability, there are many challenges faced by those attempting to access, or already accessing the NDIS, including geographical barriers and lack of local resources and supports including service providers.

Recommendations:

  • Identify opportunities with people living in rural and remote areas to ensure NDIS processes fit better within the rural and remote health context.

People in custodial or forensic services

People with IDD and mental health conditions are significantly over-represented in custodial settings, particularly Aboriginal and Torres Strait Islander people (29, 30). Over-representation is caused by a variety of factors but can lead to further poor health outcomes for people with IDD in custodial settings.

In Australia, when challenging behaviours for people with IDD result in involvement with the criminal justice system, there is a dearth of secure, therapeutic community options.

Once in prison, people with IDD often struggle to receive the care they need due a lack of staff awareness and training on disability and mental health (10).

People with IDD in forensic services can often face ineffective and complex difficulties when attempting to access the NDIS. Currently, the NDIS is not well resourced for people with disability in prison, as the justice system is expected to provide all necessary supports to those held in forensic and custodial facilities (31).

Recommendations:

  • Streamline bureaucratic processes which prohibit or interfere with people with intellectual and developmental disability leaving forensic services without obtaining a NDIS plan before release, which should include appropriate housing and ongoing, culturally safe mental health care and support (10).

Autism Spectrum Disorder

While the RANZCP acknowledges the strides the NDIA has made in streamlining NDIS processes for people with Autism Spectrum Disorder (ASD), including the development of the Autism Advisory Group, challenges do remain. It has been noted by some members that there continues to be a lack of clarity or consistency for ASD assessment and diagnosis under the NDIS which requires further development.

Royal Australian and New Zealand College of Psychiatrists submission | Page 14 of 18

Recommendations:

  • Engage with psychiatrists on functional assessment tools to ensure the complexities and intersections within an ASD assessment are acknowledged to ensure better accuracy for those with ASD seeking to access the NDIS.

Attention Deficit Hyperactivity Disorder Attention Deficit Hyperactivity Disorder (ADHD) is a condition which is characterised by a persistent pattern of hyperactivity, inattention and impulsiveness (32, 33). Evidence suggests that ADHD occurs in about 5 per cent of children and 2.5 per cent of adults (33). The RANZCP notes that ADHD is not among the conditions listed by the NDIA (34-36). It has been noted by some psychiatrist members seeking clarity on whether people dealing with ADHD, which severely impacts their daily functioning, are able to access the NDIS. Recommendation

  • Identify clearly on the NDIS website whether those with ADHD are eligible to apply for the NDIS.

Older people with disability Older people with disability can experience significant health burdens with international estimates of 46 per cent of people over 60 years of age having a disability (37). The changing landscape of community mental health services with the advent of the NDIS has bought many positive changes for people with disability, however, older people with disability face new challenges accessing appropriate mental health services in the new environment. People over the age of 65 are ineligible for the NDIS. Members of the RANZCP have expressed concern over the relatively young cut off age of eligibility for the NDIS and the gap in services for people who are ineligible for the NDIS in the current disability sector environment. Many people are reluctant to seek support in old age services this early. Consequently, many older people with disability who were ineligible for the NDIS have reported inadequate supports and funding to suit their needs, some foregoing supports in lieu of a gap in disability supports such as equipment, therapeutic supports or transportation (20). This can also apply to mental health services as psychiatrists report instances where referrals to previous mental health services have been rejected as, with the advent of the NDIS, they are no longer available to people over 65 years. The gap in referrals for older people with disability is of significant concern to psychiatrists and should be addressed. Those who are still receiving services through the Continuity of Supports remain unsure as to the transition period and when this might end. While the RANZCP acknowledges the national aged sector services for mental health care, we have concerns that, given the size of this cohort, services may not be adequate to provide effective care to this group. Given the vulnerability of this group, the RANZCP continues to provide input into the aged care sector space such as the current Royal Commission into Aged Care. Members of the RANZCP also note the overlap between disability and early-onset dementia creates a gap in service accessibility which is a concern for people seeking care. Recommendations:

  • Commit to retaining similar long-term disability services for older people who will lose access to certain services under the NDIS rollout including clearer communication of alternative referral pathways to medical professionals.

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Homeless people with disability There are strong associations between mental health and homelessness (38). The 2016 Census of Population and Housing reported an increase in homeless by 4.6 percent (39). While the NDIA is looking at making inroads in this area, the logistics of homelessness (transience, poor health and difficult accessing health care) can make it difficult for this group to access appropriate services more generally. The challenges in accessing services and the nature of being homeless can exacerbate or result in a mental health condition. Recommendations:

  • Provide further funding to the homeless sector to ensure people who are homeless can access support to find housing and to facilitate better access to the NDIS and other services (11).

People with disability who are pregnant or have recently given birth People with disability who are pregnant or have recently given birth are not currently able to be reassessed for daily functioning supports which incorporate supports related to pregnancy or new parenthood. For example, a pregnant woman with ASD required support in parenting her new infant but as this was not identified on her plan, she was not able to access supports which, in turn, impacted on her day-to-day functioning. Recommendations:

  • Ensure planning is flexible to better allow people who are pregnant or in the perinatal period to access day-to-day supports related to pregnancy and parenting.
  • Develop a comprehensive outreach NDIS strategy for engaging with people with disability from vulnerable populations (1).
  • Establish specialist disability services to address service gaps for people with complex and challenging behaviours (10).
  1. Conclusion The RANZCP appreciates the opportunity to provide feedback to the Joint Standing Committee on opportunities to strengthen the performance and implementation of the NDIS for people with psychosocial disability. Recognising the intersection between health and disability is imperative in improving the experience of people with disability within the NDIS. As part of this recognition, the RANZCP supports ensuring NDIS processes best reflect the fluctuating nature of psychosocial disability and the model of recovery. The integration of disability and health requires further clarification and streamlining of how these two sectors could better work to complement and support NDIA participants and other stakeholders. The RANZCP looks forward to continuing to work with the NDIA towards strengthening the NDIS for people with psychosocial disability.

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