Supported and substitute decision making and the NDIS Barwon Disability Advocacy Network Conference 4 December 2014 John Chesterman, Manager of Policy and Education

1. Introduction OPA is an independent statutory authority with the following key functions: guardian of last resort investigates applications to Vic. Civil and Administrative Tribunal coordinates 5 volunteer programs Community Visitors program Independent Third Person program Community Guardianship program Supported Decision-Making program Corrections Independent Support Officers advocates (individual and systemic) provides an advice service delivers community education A guardian is a person who is appointed by the Victorian Civil and Administrative Tribunal Guardianship List (VCAT) to make personal and lifestyle decisions for an adult with a disability. The Office of the Public Advocate (OPA) investigates applications made to VCAT. Some of the advocacy work OPA is involved in includes acting as advocate of last resort for individuals, systemic advocacy (lobbying for change across system) including a wide range of research projects. OPA provides support to private guardians; one in four guardians appointed is a private guardian. OPA’s Advice service received over 14,600 enquiries last financial year. Community education – OPA provided education to 200 organisations last financial year. OPA has an awareness raising and information role; it maintains a website, produces publications and fact sheets and engages with the media towards systemic change. 2

Talk overview Introduction Some key NDIS questions Supported decision making Victorian substitute decision-making laws National substitute decision-making laws How do these laws work together Future developments Conclusion

1. Introduction OPA’s NDIS-related work Community Visitors conduct visits in Barwon launch site OPA Advocate Guardians have acted as advocates for 28 participants in shared supported accommodation OPA Advocate Guardians have acted as advocates for 31 participants at Colanda OPA has been guardian for 9 NDIS participants OPA released a discussion paper on ‘Guardianship and the NDIS’ An evaluation of OPA’s NDIS advocacy has recently begun We’ve held several meetings with the NDIA

Launch of NDIS (as at July 2014) Barkly region Perth Hills

Launch and rollout of NDIS Launch July 2013 Launch July 2014 Full rollout begins Complete coverage NSW Hunter area - July 2016 July 2018 Victoria Barwon area July 2019 Tasmania 15-24 years old SA 0 to 5 years old (and now up to 13 years old if not on disability support) WA Perth Hills area My Way model: Lower South West t.b.c. Queensland ACT All the ACT July 2014 NT Barkly region

NDIS – at the end of first year (end June 2014) 8,585 eligible participants 7,316 participants had approved plans ‘Average annualised package cost’ (excluding Stockton): $34,600 Distribution shows small number of people with high costs (over $100,000) E.g. NSW and Vic: 65% of participants account for 18% of costs Source: NDIA, ‘Report on the sustainability of the scheme’, August 2014.

Primary disability of participants NDIA, ‘4th Quarterly Report to COAG Council on Disability Reform’, 30 June 2014 , p. 16

Primary disability of participants NDIA, ‘4th Quarterly Report to COAG Council on Disability Reform’, 30 June 2014 , p. 16

Productivity Commission modelling on support needs Productivity Commission, Disability Care and Support Inquiry Report, 2011, vol. 2, p. 755

What has been funded? NDIA, ‘4th Quarterly Report to COAG Council on Disability Reform’, 30 June 2014 , p. 19

2. Some key NDIS questions As we know, the NDIS is based on a market/purchaser model. ‘The Commission proposes an “individual choice” model, in which people with a disability (or their guardians) could choose how much control they wanted to exercise’. Productivity Commission, Disability Care and Support Inquiry Report, vol. 1, 2011, p. 30.

2. Some key NDIS questions How is the 'consumer choice' philosophy working for people with significant cognitive impairments or mental ill health? Who is making decisions? the person concerned? (and is sufficient support being given?) an informal decision maker? a substitute decision maker (e.g. guardian, nominee)? 2. NDIS participation gives rise to new choices. To what extent are substitute decision makers being appointed because new (NDIS) decisions need to be made? 3. When should a substitute decision maker be appointed for an NDIS participant? Our response: When participation in the NDIS presents a choice about a significant matter that the person is unable with support to make themselves and where no less restrictive alternative to the appointment exists: e.g. a participant with a significant cognitive impairment without family or other informal supporters, has the opportunity to move to new accommodation, and does not have the ability to make the decision about whether to move.

3. Supported decision making United Nations Convention on the Rights of Persons with Disabilities One of the key themes is that state-directed substitute decision making should be minimised and supported decision making should be preferred. ‘Supported decision making’ is a term used to refer to a range of practices whereby people with disability are assisted to make or implement their own decisions. United Nations Enable ‘The Convention recognizes that some persons with disabilities require assistance to exercise [legal] capacity, so States must do what they can to support those individuals and introduce safeguards against abuse of that support. Support could take the form of one trusted person or a network of people; it might be necessary occasionally or all the time …’ ‘Supported decision-making can take many forms.’ 

3. Supported decision making Supported decision making is an ever more common feature of legislative developments. Victorian Law Reform Commission, in its Guardianship Final Report (2012), recommended: Several supported decision-making initiatives New supported decision-making volunteer program to be hosted by OPA Mental Health Act 2014, section 11(1)(c): ‘persons receiving mental health services should be involved in all decisions about their assessment, treatment and recovery and be supported to make, or participate in, those decisions, and their views and preferences should be respected …’ Enduring Powers of Attorney Act 2014 creates the new entity of ‘supportive attorney’ Guardianship and Administration Bill 2014 (which lapsed) proposed the new entity of ‘supportive guardian’

3. Supported decision making Australian Law Reform Commission report on ‘Equality, Capacity and Disability in Commonwealth laws’. Looked at ‘all relevant Commonwealth laws and legal frameworks that … impact on people with disability’s recognition before the law and exercise of legal capacity on an equal basis with others’. Final report made 55 reform recommendations. Notable recommendations include: 'Reform of Commonwealth, state and territory laws and legal frameworks concerning individual decision-making should be guided by the National Decision-Making Principles and Guidelines ... to ensure that: supported decision-making is encouraged; representative decision-makers are appointed only as a last resort; and the will, preferences and rights of persons direct decisions that affect their lives'. 'A Commonwealth decision-making model that encourages supported decision-making should be introduced into relevant Commonwealth laws and legal frameworks …’ 'State and territory governments should review laws and legal frameworks concerning individual decision-making to ensure they are consistent with the National Decision-Making Principles …'

3. Supported decision making National Disability Insurance Scheme Act 2013 ‘General principles guiding actions under this Act’ (section 4) ‘People with disability should be supported to participate in and contribute to social and economic life to the extent of their ability.’ ‘People with disability should be supported to exercise choice, including in relation to taking reasonable risks, in the pursuit of their goals ...’ ‘General principles guiding actions of people who may do acts or things on behalf of others’ (section 5) ‘people with disability should be involved in decision making processes that affect them, and where possible make decisions for themselves’

4. Victorian substitute decision-making laws Substitute decision-making laws seek to protect a person by enabling someone else to make decisions for that person. In doing this, substitute decision-making laws inhibit other freedoms. Examples include Involuntary mental health treatment (note: new Mental Health Act 2014) Guardianship (and administration) (note: an amending Bill was introduced to parliament but lapsed in the lead-up to Saturday’s election) Enduring powers of attorney (note: new Powers of Attorney Act 2014)

4. Victorian substitute decision-making laws Criteria for VCAT guardianship order: The person has ‘a disability’ ‘is unable by reason of the disability to make reasonable judgements’ ‘is in need of a guardian’ Guardianship and Administration Act 1986, section 22 (guardianship) and section 46 (administration).

Guardianship Advice service or website Investigation Administration APPLICANT Investigation VCAT Administration Private administrator State Trustees Guardianship Private guardian Public Advocate ORDER All financial and legal decisions Limited to: - health care - accommodation - access to persons - access to services Or plenary (all) Note: This slide can be used as a summary slide for the entire guardianship/admin presentation. Applicant can be anyone who has a genuine interest in the represented person Recommend that applicant contact OPA’s Advice Service Monday to Friday 9.00 am to 5.00 pm or emergency after hours service 1300 309 337 application forms available from the website www.publicadvocate.vic.gov.au applications need to be sent to VCAT (not OPA) address on form. application should be accompanied with medical evidence of disability, supporting information (history, social work reports etc.) and information about the decisions the guardian or administrator needs to make a copy of the application needs to be given to all interested parties and the represented person. applications for an emergency temporary order needs to be faxed to VCAT. Applicant should also contact the OPA Advice Service 1300 309 337 OPA has a duty officer at VCAT who screens all applications to see if OPA could be usefully engaged in the matter. The duty officer may propose to VCAT that it refers the matter to OPA for investigation. VCAT may request the OPA to investigate an application and provide a report for VCAT on the matter. hearings are normally scheduled within 30 days of receipt of the application. Hearings can be conducted regionally. Hearings are generally held closest to the represented person. at the hearing all interested parties are invited to attend to express their view on the application. if the VCAT is satisfied that it is in the best interest of the represented person to have a guardian or administrator appointed they will make an order on the day. Guardianship: In the year 2003/04 25% of guardianship orders were private guardian appointments. May be limited to health care, accommodation, access to persons/service or plenary (all). Orders are usually made for 6 – 12 months. Administration: In the year 2003/04 50% of administration orders were private administrator appointments All financial and legal decisions. Orders are usually made for a 3 year period. 20

5. National substitute decision-making laws National Disability Insurance Scheme Act 2013 The CEO of the Launch Transition Agency can appoint ‘plan nominees’ and ‘correspondence nominees’ (sections 86 and 87). ‘The CEO must not appoint a person as a nominee of a participant ... except … after taking into consideration the wishes (if any) of the participant regarding the making of the appointment’ (section 88).

5. National substitute decision-making laws National Disability Insurance Scheme (Nominees) Rules 2013 3.1 ‘People with disability are presumed to have capacity to make decisions that affect their own lives ...’ 3.2 ‘However, the Act recognises that there may be circumstances where it is necessary for a person to be appointed as a nominee of a participant, and to act on behalf of, or make decisions on behalf of, a participant.’ 3.4 ‘It is only in rare and exceptional cases that the CEO will find it necessary to appoint a nominee for a participant who has not requested that an appointment be made. In appointing a nominee in such circumstances, the CEO will have regard to the participant’s wishes and the participant’s circumstances (including their formal and informal support networks).’ 3.7 ‘Usually, a plan nominee is able to do any act that may be done by a participant under, or for the purposes of, the Act, that relates to: (a) the preparation, review or replacement of the participant’s plan; or (b) the management of funding for supports under the participant’s plan ...’ 3.9 ‘In contrast, the role of a correspondence nominee is significantly narrower ... The acts that a correspondence nominee is able to do include making requests to the Agency (for example, requests for information), and receiving notices from the Agency, on behalf of the participant.’

6. National and state substitute decision-making laws: How do they work together? ‘In appointing a nominee of a participant … the CEO must have regard to whether there is a person who, under a law of the Commonwealth, a State or a Territory: (a)  has guardianship of the participant; or (b)  is a person appointed by a court, tribunal, board or panel (however described) who has power to make decisions for the participant …’ (NDIS Act, section 88). There are slight differences between the roles of nominees and guardians, and review mechanisms in relation to both roles are considerably different (see OPA, ‘Guardianship and the NDIS’ discussion paper). OPA is working with the NDIA here in Barwon to develop a practical ‘decision-making tree’ to identify when substitute decision making (which must only ever be a last resort) may be necessary, and how it should operate (e.g. should a guardianship order be sought or should a nominee be appointed?).

7. Future developments NDIS Safeguards work State/territory mechanisms apply for now, but ‘nationally consistent’ mechanisms have been flagged COAG Consultation Paper (including Regulatory Impact Statement) expected December 2014 Consultation will be open until March 2015 Decision then by COAG Ministers

7. Future developments NDIS Safeguards work OPA has sought 5 key elements in relation to people with cognitive impairments and mental ill health: 1. Supporting personal choice support needs to be provided for decision making guardianship should not routinely be used for participants usage of the NDIS nominee provisions needs to be closely monitored 2. Advocacy support – this can be crucial for good NDIS outcomes 3. Clear complaints mechanism – at national level makes sense 4. On-site monitoring – e.g. OPA (Vic’s) Community Visitors (as recommended by the Productivity Commission) 5. Investigation of situations of concern – broader investigation power for OPA (Vic) and equivalents in other jurisdictions (where this power is not already held)

7. Future developments Possible state guardianship reform (2012 Victorian Law Reform Commission report) Recently announced Victorian parliamentary committee inquiry into violence against people with disabilities – (may have implications for NDIS safeguards) Possible federal reform concerning supported and substitute decision making (2014 Australian Law Reform Commission report) NDIS and housing. A paper is expected to be released by the end of the year.

8. Conclusion The NDIS gives rise to new choices People with significant cognitive impairments and mental illnesses should be supported wherever possible to make these choices themselves Substitute decision making laws exist at state and federal level state (e.g. guardians) federal (e.g. nominees) We need to work out how these laws do (and should) operate together in practice (and some changes are needed) This is an integral aspect of the development of ‘nationally consistent’ safeguards.

Thank you