Changes required in NDIS legislation for people with psychosocial disability | External submission

NSW Consumer Advisory Group – Mental Health Inc.

MadetoMeasure:

Submission on the NationalDisabilityInsuranceScheme

Bill2012

25st January 2013

This submission was compiled on behalf of NSW CAG by:

Susan Horsley, Policy Officer

Ka Ki Ng, Senior Policy Officer

Gwen Scotman, Policy Officer

Acknowledgements

NSW CAG would like to thank the individual participants who generously shared with us their experiences and insights.

We would also like to acknowledge the staff at all agencies that gave us the opportunity to consult with the individuals accessing their services.

NSW Consumer Advisory Group – Mental Health Inc. 501 / 80 William Street

Sydney NSW 2011

ABN 82 549 537 349

P: 02 9332 0200 F: 02 9332 0299 W: www.nswcag.org.au

Table of Content

NSW Consumer Advisory Group - Mental Health Inc. …………………………………. 4

Introduction ……………………………………………………………………………………………… 5

Respect for the United Nations Convention on the Rights of Persons with Disabilities ………………………………………………………………………………………… 7 Australia’s human rights commitments and obligations……………………………………….. 7 Disability requirements in the NDIS …………………………………………………………………… 7 Supported decision making for participants ………………………………………………………… 8 The Agency’s role in facilitating innovations and research …………………………………… 9 NDIS Interactions with mental health and guardianship laws ……………………………… 9 Transition support for people aged 65 and over ……………………………………………….. 10 Accessibility of information on the NDIS ………………………………………………………… 11 Memberships of the Agency’s Board ………………………………………………………………… 11

Safeguards for persons with disabilities ………………………………………………………12 Authority of the Launch Transition Agency ……………………………………………………… 12 Public reporting by the Launch Transition Agency …………………………………………… 12 Disclosure of interests by members of the Agency’s Board ………………………………. 13 Independent complaints mechanism ………………………………………………………………… 13 Relationship between service providers …………………………………………………………….. 13 Review of the NDIS …………………………………………………………………………………………. 14

Conclusion ……………………………………………………………………………………………….14

NSW Consumer Advisory Group - Mental Health Inc.

NSW Consumer Advisory Group – Mental Health Inc. (NSW CAG) is the independent, state-wide peak organisation for people with a lived experience of mental illness (consumer). We work with consumers to achieve and support systemic change.

NSW CAG’s vision is for all consumers to be able to participate meaningfully in society and to experience fair access to quality and recovery focused services which reflect their needs. Participation is a fundamental human right as enshrined in Article 25 of the International Covenant on Civil and Political Rights (ICCPR). We work from the premise that the participation of consumers results in more effective public policy and facilitates individual recovery.

Our work is guided by six principles:  Being person centred and empowering consumers in the interests of consumers;  Adopting a recovery approach to building positive futures;  Promoting positive images and reducing stigma and discrimination;  Enhancing best practice and building understanding of effective approaches to consumer participation;  Capacity building of our organisation, consumers and services; and  Promoting professionalism and continuous improvement in our ways of working.

NSW CAG is an independent non-government organisation that receives core and project funding from the NSW Ministry of Health.

Introduction

NSW Consumer Advisory Group – Mental Health Inc. (NSW CAG) welcomes the opportunity to provide feedback on the National Disability Insurance Scheme Bill 2012. We consider this Bill a significant opportunity to address the support needs for Australians living with a psychosocial disability, by introducing new opportunities for personal support, choice, social inclusion and dignity.

Psychosocial disability refers to the experience of living with a disability that is associated with a severe mental health condition. It is the leading cause of disability in Australia as well as the leading cause of death for Australians under 45 years old.1 The support needs of people with a psychosocial disability are complex, and its impact on both people with a psychosocial disability and their carers frequently underestimated. Without access to appropriate support and services, it can exacerbate a person’s mental health conditions and lead to other disadvantages, including social isolation, poverty and homelessness. It can also lead to increased demand for crisis intervention and health care supports.2

The National Disability Insurance Scheme (NDIS) provides an opportunity for disability support arrangements to be tailored to better meet the needs of people with psychosocial disability. The current disadvantages that people experience due to the way disability services are delivered could be addressed fairly and sustainably under the NDIS.

Our submission makes the following recommendations:

That the NDIS legislation in its Objects should give effect to all obligations that Australia has under the United Nations Convention on the Rights of Persons with Disabilities

(CRPD)

That the disability requirements in Section 24(1)(a) be amended to reflect the description of disability articulated in Article 1 of the CRPD.
That the NDIS legislation be aligned with a supported decision making approach by: a. amending Section 4(2) to state that, “people with disability should be supported to participate in and contribute to social and economic life to the fullest extent possible”.

b. incorporating a presumption that participants have decision-making capacity. c. authorising and supporting participants to appoint their own nominees, and permitting the CEO only to decide on an appointment on behalf of the participant if the participant is unable to do so at the time, or where an appointment would be harmful to the participant’s wellbeing.

1 A Healthier Future for All Australian – Final Reports, National Health and Hospitals Reform Commission (2009), online at: http://www.health.gov.au/internet/nhhrc/publishing.nsf/content/nhhrc-report 2 Unravelling Psychosocial Disability – A Position Statement by the National Mental Health Consumer & Carer Forum (NMHCCF) on Psychosocial Disability associated with Mental Health Conditions (2011), available online at: http://www.nmhccf.org.au/documents/NMHCCF_Psychosocial%20disability_Booklet_Web%20version_27Oct11 .pdf

d. including the right of a participant to have an independent support person of their choice accompany them when attending an assessment or a medical, psychiatric or psychological examination.

That the NDIS Launch Transition Agency Functions in Section 118(1) are expanded to include facilitating and undertaking innovation & research in psychosocial disability.
That Section 118(2) inserts a requirement that the Agency should closely consult with, and actively involve, persons with disabilities, including children with disabilities, in its work.
That the NDIS legislation clearly defines how the NDIS will interact with guardianship and mental health laws made by States and Territories, to ensure the Scheme applies equally to all participants.
That the Bill requires transition planning to be made with participants turning 65, so that they are not left without appropriate support when they are no longer eligible to receive support through the NDIS.
That the NDIS legislation requires that: a. the legislation and the Rules be provided in formats that are accessible to people with sight or other sensory impairment.

b. a simplified guide on how to use the NDIS be produced in simple English, community languages, and formats that are accessible to those with sight or other sensory impairment, and that these materials be made easily and freely available.

That the NDIS legislation requires the Board of the Launch Transition Agency to include persons with disabilities, including a person with a lived experience of psychosocial disability.
That the NDIS legislation: a. requires authority over plan management (including funding management) to be carried out by individuals and/or organisations that are independent of the Agency.

b. includes all decisions made by the CEO and/or the Agency to be reviewable. 11. That the NDIS legislation requires the Agency to provide comprehensive and timely annual reporting to the public.

That the NDIS legislation requires members of the Board of the Agency to provide written disclosure of interests to the Minister and to the Board.
That the NDIS legislation provides a complaints process against the Agency with the Commonwealth Ombudsman identified as the independent complaints handler.
That the NDIS legislation requires clear written agreements between relevant agencies, so that service provision is cooperative, flexible and comprehensive.
That the two year review of the NDIS legislation must include public consultations, and involve the participation of persons with disabilities who are users of the NDIS.
That the NDIS legislation establishes a regular timeframe for reviewing the legislation.

Respect for the United Nations Convention on the Rights of Persons with Disabilities

Australia’s human rights commitments and obligations Australia is a signatory to the United Nations Convention on the Rights of Persons with Disabilities (CRPD) and has made a commitment to uphold the obligations contained in the CRPD. The NDIS legislation must show that it is compatible with Australia’s human rights commitments. According to the ‘Statement of Compatibility with Human Rights’ contained in the Explanatory Memorandum for the NDIS Bill, the Bill is only compatible with 13 articles of the CRPD.3 In the Objects of the Act, Section 3(1)(h) also states that the Act aims only to gives effect to “certain obligations” that Australia has under the CRPD. The NDIS Bill should not limit itself to only recognising selected articles, but rather give effect to all Articles in the CRPD.

Recommendation:

That the NDIS legislation in its Objects should give effect to all obligations that Australia has under the United Nations Convention on the Rights of Persons with Disabilities.

Disability requirements in the NDIS Section 24(1)(a) provides that a person meets the disability requirements if “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.” While NSW CAG acknowledges the commitment in the NDIS to support the needs of people with psychosocial disability, we are concerned that this is the only impairment where the cause of the disability is stated. The Bill does not talk about the physiological cause/condition of the other disabilities covered by the NDIS.

The Bill should be guided by the description of disability articulated in Article 1 of the CRPD, which states that, “persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments”.4 The NDIS should include all types of disability on an equal basis.

Recommendation:

That the disability requirements in section 24(1)(a) be amended to reflect the description of disability articulated in Article 1 of the CRPD.

3 National Disability Insurance Scheme Bill 2012 - Explanatory Memorandum, House of Representatives, The Parliament of the Commonwealth of Australia (2012), p81, available online at http://www.google.com.au/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&ved=0CC8QFjAA&url=http%3A %2F%2Fwww.comlaw.gov.au%2FDetails%2FC2012B00230%2Ff3067c07-edde-4393-9053 e142f02b4488&ei=D2HuUKeeForkmAXojYHwDA&usg=AFQjCNF3AtdbG0mNv3cwb6N8UiEwsuLW2w 4 United Nations Convention on the Rights of Persons with Disabilities (2006), Article 1 – Purpose, available online at: http://www.un.org/disabilities/convention/conventionfull.shtml

Supported decision making for participants NSW CAG is pleased to see reference to supported decision making in the NDIS Bill.5 This reflects the key principles underpinning the CRPD, which regards the individual as the decision maker, and provides that individuals be supported in making decisions when support is required.6 NSW CAG is, however, concerned that the following aspects of the NDIS Bill are inconsistent with a supported decision making approach.

The NDIS General Principles do not always assume capacity. Section 4(2) states, “people with disability should be supported to participate in and contribute to social and economic life to the extent of their ability”. The qualification “to the extent of their ability” in fact assumes the person lacks capacity. This assumption gives rise to the possibility that a person with disability could be denied their right to choose and to participate, simply because they were assumed as lacking capacity. We know this is a common experience for people with a mental illness. To resolve this inconsistency, the wording of Section 4(2) should be changed so that it replaces ‘to the extent of their ability’ with ‘to the fullest extent possible’.
The Bill gives participants limited rights to decide who should be their nominees, because the final decision of who should be appointed as a nominee rests with the

CEO of the NDIS Launch Transition Agency (the Agency). Further, the Bill

provides that while written consent from the person being appointed as a nominee is required, only the wishes of the participant needs to take into consideration.7 Rather than limiting the rights of the participants to choose their nominee, the Bill should require the wishes of the participant to be complied with, to the fullest extent possible. The CEO should only be able to decide on an appointment if the participant is unable to do so at the time, or where an appointment would be harmful to the participant’s wellbeing.

The Bill restricts participants’ ability to be accompanied by their preferred support persons in assessments and examination appointments. Section 85(1)(d) provides that a participant may only be accompanied by their nominee in assessment and examination appointments if the person conducting the assessment or examination consents. This is unreasonable and discriminatory because most members of society have the freedom to choose who will attend medical and/or other appointments with them.

Furthermore, the provision does not require the person conducting the assessment or examination to consider the cultural appropriateness of the decision. For example, there is no requirement to consider whether it might be culturally necessary for the participant to be accompanied by his/her kin in the assessment or examination. The provision also does not recognise the distress and trauma that participants might experience if they were denied access to their

5 Section 80(4) of the NDIS Bill. 6 From Exclusion To Equality- Realizing the rights of persons with disabilities Handbook for Parliamentarians on the Convention on the Rights of Persons with Disabilities, (2007) UN Enable, Chapter 6, available online at: http://www.un.org/disabilities/default.asp?id=212 7 Sections 86, 87, 88.

preferred support person when undergoing an assessment or examination. The legislation should be amended to recognise the right of a participant to have an independent support person of their choice accompany them when attending an assessment or a medical, psychiatric or psychological examination.

Recommendations:

That the NDIS legislation be aligned with a supported decision making approach by: a. amending Section 4(2) to state that, “people with disability should be supported to participate in and contribute to social and economic life to the fullest extent possible”.

d. including the right of a participant to have an independent support person of their choice accompany them when attending an assessment or a medical, psychiatric or psychological examination.

The Agency’s role in facilitating innovations and research Section 34(d) of the Bill states in order to decide whether to fund a particular support, the CEO of the Agency must be satisfied that “the support will be, or is likely to be, effective and beneficial for the participant, having regard to current good practice”. NSW CAG is aware that there is limited research into psychosocial disability, its effects and ways to reduce its impact. Because of this knowledge gap, we are concerned that assessments would fail to identify aspects of psychosocial disability and the related support needs. We also know that many generic disability support services and mainstream community services do not have the skills and knowledge to meet the support needs of people with psychosocial disability.

To address these issues, the Agency should have a key role in facilitating and undertaking innovations and research in psychosocial disability. It should do so with active involvement of persons with disabilities, including children with disabilities.

Recommendations:

That the NDIS Launch Transition Agency Functions in Section 118(1) are expanded to include facilitating and undertaking innovation & research in psychosocial disability.
That Section 118(2) inserts a requirement that the Agency should closely consult with, and actively involve, persons with disabilities, including children with disabilities, in its work.

NDIS Interactions with mental health and guardianship laws To ensure the NDIS applies equally to people with psychosocial disability, the legislation needs to clearly define how the NDIS will interact with guardianship and mental health

legislations. Currently, the Bill only states that guardianship needs to be considered when appointing a nominee.8

Guardianship and mental health laws are state and territory based, and they regulate the area of legal capacity and substitute decision making. For example, the Mental Health Act in NSW does not assume a person has decision making capacity, and does not require people to be supported in making decisions about their own care. Mental health consumers in NSW have said that they felt they were automatically assumed as lacking decision making capacity when they were under the NSW Mental Health Act. The NSW Mental Health Act also overrides the NSW Guardianship Act, which further complicates the rights of participants who are under both the Guardianship and Mental Health Act in NSW.

Given guardianship and mental health laws could work against the person-centred and supported decision making approach of the NDIS, it is crucial the NDIS legislation articulates how the Scheme will apply to participants who are under Mental Health Acts and/or Guardianship Acts. For example, when a person is under a compulsory treatment order for a mental illness, the NDIS legislation should clarify the process for determining whether the person is able to manage their NDIS participation plan. This would ensure that people with mental illness would not automatically be assumed as lacking capacity. Similarly, when a participant is suddenly brought under the NSW Mental Health Act, a medical practitioner would usually have the power to decide on the clinical and non clinical support for the person. The NDIS legislation should clarify whether the medical practitioner would be able to make decisions that override the person’s existing NDIS participation plan, and if so, to what extent and for how long.

Clearly articulating how the NDIS would interact with guardianship and mental health laws would ensure participants are not discriminated against simply because they are under a Guardianship or a Mental Health Act.

Recommendation:

That the NDIS legislation clearly defines how the NDIS will interact with guardianship and mental health laws made by States and Territories, to ensure the Scheme applies equally to all participants.

Transition support for people aged 65 and over The NDIS legislation needs to ensure participants aged 65 will continue to have their needs met if they are transitioned out of the NDIS. Section 29(1)(b) states that a participant is no longer eligible for the NDIS if he/she is aged 65 and has entered a residential care service or is being provided with community support. While it is important for the NDIS to avoid duplication of support, the legislation should require transition planning to be carried out for participants who are likely to be transitioned out due to the age limitation in the Scheme.

8 Section 88(4).

Recommendation:

That the Bill requires transition planning to be made with participants turning 65, so that they are not left without appropriate support when they are no longer eligible to receive support through the NDIS.

Accessibility of information on the NDIS The NDIS legislation should require the NDIS legislation and Rules to be made available in formats that are accessible to people with sight or other sensory impairment. This would be in keeping with Article 2 of the CRPD.

To ensure information about the NDIS is accessible, NSW CAG also recommends that a simplified version of the NDIS legislation and the Rules, as well as a simplified guide on how to use the NDIS, be provided. These materials should be translated into community languages, and they should be made freely available and widely distributed.

Recommendation:

That the NDIS legislation requires that: a. the legislation and the Rules be provided in formats that are accessible to people with sight or other sensory impairment.

Memberships of the Agency’s Board NSW CAG is pleased to see that the Bill requires the memberships of the independent Advisory Council to reflect the diversity of persons with disabilities.9 We are, however, disappointed the legislation does not require the Board of the Launch Transition Agency to also consist of members who are persons with disabilities.10 The NDIS legislation should require the Board’s memberships to include people with lived experience of using disability services. This would ensure they are at the centre of the decision making process at a systemic level, which would also be consistent with Article 4 and Article 29 of the CRPD.

Recommendation:

That the NDIS legislation requires the Board of the Launch Transition Agency to include persons with disabilities, including a person with a lived experience of psychosocial disability.

9 Section 146. 10 See Section 127.

Safeguards for persons with disabilities

Authority of the Launch Transition Agency

NSW CAG is concerned that the Bill gives ultimate authority to the Agency. Following are three major concerns in regards to the roles and powers of the Agency.

Under the current Bill, the Agency and its CEO are the regulator and fund allocator for the Scheme. In some circumstances, they are also a participant’s planner, fund-holder and plan manager. This raises serious concerns of centralised authority being invested in the Agency and its CEO. To avoid conflict of competing affiliations, priorities or advocacy by the Agency, the Agency should be the regulator and fund allocator. The role of a participant’s planner, fund-holder and plan manager should be independent of the Agency, and be carried out by NGOs, disability support agencies and others.
The Agency is being set up to purchase services only from providers that are registered with the Agency.11 This means participants whose funds are managed by the Agency could have restricted choice of support, because services not registered with the Agency would be excluded. The unequal impact of this provision could be resolved if, as per our discussion above, the fund-holding function is removed from the Agency and carried out by those independent of the Agency, such as NGOs and community managed organisations.
The Bill gives final authority to the CEO to make a wide range of decisions affecting individual participants.12 However, only certain decisions made by the CEO are listed in Section 99 as reviewable. This is highly inconsistent with the Objects of the Act, which endorse a participant’s choice and self-determined support preferences.13 Participants should have right of appeal against all decisions affecting them, and they should be supported in doing so, if support is required.

Recommendations:

That the NDIS legislation: a. requires authority over plan management (including funding management) to be carried out by individuals and/or organisations that are independent of the Agency.

b. includes all decisions made by the CEO and/or the Agency to be reviewable. Public reporting by the Launch Transition Agency The Bill should require the Agency to provide regular reporting to the public. Regular public reporting is essential to maintaining public confidence in the ongoing

11 Section 33(6). 12 Some examples of the CEO having final decision making are Sections 19(1)(a); 19(2)(b); 20(a); 21; 28; 30; 33(2); 37(1); and 66. 13 An object of the NDIS Bill is to “enable people with disability to exercise choice and control in the pursuit of their goals and the planning and delivery of their supports”: Section 3(1)(d).

implementation of the NDIS. To maintain accountability and transparency, the Agency should at a minimum report to the public annually. The annual reporting should include updates on the implementation of the NDIS, the extent to which key performance indicators are being met, participation rates (including numbers of excluded applicants), as well as complaints received and their outcomes. It would also be valuable for the Agency to measure and report on the effectiveness of the NDIS against the stated principles and outcomes of the National Disability Strategy 2010-2020.14

Recommendation:

That the NDIS legislation requires the Agency to provide comprehensive and timely annual reporting to the public.

Disclosure of interests by members of the Agency’s Board The Bill needs to require the Board members of the Agency to provide written disclosure of interests to the Minister and to the Board. The Bill currently requires the members of the Advisory Council to provide such written disclosure15, but it does not have the same requirement for members of the Agency’s Board. NSW CAG considers this is a significant oversight that must be corrected.

Recommendation:

That the NDIS legislation requires members of the Board of the Agency to provide written disclosure of interests to the Minister and to the Board.

Independent complaints mechanism To ensure accountability, the Bill needs to provide mechanisms for raising complaints against the Agency and the CEO. Currently, the Bill only provides that a person may request the CEO to review a “reviewable decision”, and if necessary, escalate the matter to the Administrative Appeals Tribunal.16 NSW CAG proposes the NDIS legislation should provide a complaints process similar to that enacted by the NSW Community Services (Complaints, Reviews and Monitoring) Act 1993, but using the Commonwealth Ombudsman as the independent arbitrator.

Recommendation:

That the NDIS legislation provides a complaints process against the Agency with the Commonwealth Ombudsman identified as the independent complaints handler.

Relationship between service providers For the NDIS to work effectively across jurisdictions and services sectors, there needs to be clearly define service provider relationships, including care pathways. The Productivity

14 National Disability Strategy (2010), available online at: http://www.fahcsia.gov.au/sites/default/files/documents/05_2012/national_disability_strategy_2010_2020.pdf 15 Section 152. 16 Sections 99 to 103.

Commission in its inquiry into the NDIS suggests Memorandums of Understanding17 (MoU) are vital between the health, mental health, aged and palliative care sectors.

While some MoUs do exist between the relevant government departments, the problem of participants being disadvantaged by poor communication, coordination and planning amongst service providers must be prevented. Having clearly defined relationships between services is especially important in providing services to people with mental illness. Due to the potential episodic nature of mental illness, people with mental illness may use services intermittently rather than continuously. People have lost access to services in the past simply because they were not using the services continuously.

Clear written agreements between relevant agencies would ensure there are effective protocols for timely and smooth referrals. This would help prevent individuals from falling through the cracks between the different agencies. It would also prevent over servicing or duplication of services.

Recommendation:

That the NDIS legislation requires clear written agreements between relevant agencies, so that service provision is cooperative, flexible and comprehensive.

Review of the NDIS NSW CAG welcomes the requirement for the NDIS legislation to be reviewed after the first two years of its operation.18 The two year Review provides an opportunity to modify any sections that are not working effectively, and add improvements or changes that will make participants’ experiences more successful. We, however, recommend the review to include broad public consultations and public reporting. Persons with disabilities who are users of the NDIS must be integral to the review process. We also recommend the NDIS legislation to establish a regular timeframe for reviewing the legislation, for example, for the legislation to be reviewed every five years.

Recommendation:

That the two year review of the NDIS legislation must include public consultations, and involve the participation of persons with disabilities who are users of the NDIS.
That the NDIS legislation establishes a regular timeframe for reviewing the legislation.

Conclusion

Thank you for considering NSW CAG submission. We believe the NDIS can greatly improve access to support services by persons with disabilities, including psychosocial disability. The Scheme can also enable persons with disabilities to participate in the community on an equal basis with others.

17 Productivity Commission Inquiry into a National Disability Long Term Care and Support Scheme: NSW Government Response to the Draft Report on Disability Care and Support (2011) p. 2, available online at: http://www.adhc.nsw.gov.au/__data/assets/file/0010/237493/NSW_SUB_v26_13_May_final_cover.pdf 18 Section 208.

However, for the Scheme to be effective, a number of changes are required in the NDIS legislation. The NDIS legislation needs to reflect a truly person-centre approach; it needs to provide equal access to the Scheme by people with psychosocial disability; and it needs to ensure the Scheme is implemented in an accountable and transparent manner.

We understand that there is a second complementary document outlining the Rules of the legislation and feel confident that the above information would also be relevant feedback in the development of this legislation.

The knowledge-base as well as the capacity of services to meet the needs of people with psychosocial disability must be enhanced. This will require consultation with, and involvement of, persons with psychosocial disabilities and their families and carers and NSW CAG would be happy to assist in this process.