dr john chesterman office of the public advocate

People with cognitive impairments and the NDIS Presentation to National Disability Summit,

Melbourne, 18 March 2015

John Chesterman, Manager of Policy and Education

1. Introduction

OPA is an independent statutory authority with the following key functions:

• adult 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

People with cognitive impairments and the NDIS

1. Introduction

2. Who is making NDIS decisions when participants have cognitive impairments?

3. The transition to a nationally-consistent safeguards framework

Launch of NDIS (as at July 2014)

Perth Hills

Barkly region

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 2016 July 2019

Tasmania 15-‐24 years old -‐ July 2016 July 2019

SA 0 to 5 years old (and now up to 13 years old if not on disability support)

-‐ July 2016 July 2018

WA -‐ Perth Hills area My Way model: one site

(and a further site from July 2015)

t.b.c. t.b.c.

Queensland -‐ -‐ July 2016 July 2019

ACT -‐ All the ACT July 2014 July 2016

NT -‐ Barkly region July 2016 July 2019

NDIS – at the start of 2015

• 11,029 participants had approved plans

• ‘Average annualised package cost’ (excluding Stockton and Colanda): $35,300

• Distribution shows small number of people with high costs: ‘69% [of participants] have an annualised package cost below $30,000’

Source: NDIA, ‘6th Quarterly Report to COAG Disability Reform Council’, 31 December 2014 , pp. 18, 21-22.

Primary disability of participants

NDIA, ‘6th Quarterly Report to COAG Disability Reform Council’, 31 December 2014 , p. 27

Productivity Commission modelling on support needs

Productivity Commission, Disability Care and Support Inquiry Report, 2011, vol. 2, p. 755

What has been funded?

NDIA, ‘6th Quarterly Report to COAG Disability Reform Council’, 31 December 2014 , p. 31

OPA (Vic)’s involvement

• Community Visitors conduct visits in Barwon launch site • Many meetings with NDIA • 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 (the only residential institution in the launch site) • OPA has been guardian for 9 NDIS participants • OPA released a discussion paper on ‘Guardianship and the NDIS’ • OPA has developed a ‘decision-making tree’ in relation to supported and

substitute decision making and the NDIS • An evaluation of OPA’s NDIS advocacy has recently begun


• One of the key principles underpinning the United Nations Convention on the Rights of Persons with Disabilities concerns supported decision making, which can be defined as the requirement that people with disabilities be supported to play as great a role as possible in making and implementing the decisions that affect them.

• There is reference in the NDIS Act to supported decision making » e.g. section 80(4) of the Act suggests the Rules may require nominees

‘to support decision-making by the participant personally’. » The NDIS (Nominee) Rules (cl. 3.3) provide that appointments of

nominees should occur ‘only when it is not possible for participants to be assisted to make decisions for themselves’.


Convention on the Rights of Persons with Disabilities

UN Committee on the Rights of Persons with Disabilities, General Comment No. 1 (2014), Article 12, 11 April (par. 24):

‘State parties’ obligation to replace substitute decision-making regimes by supported decision-making requires both the abolition of substitute decision-making regimes and the development of supported decision-making alternatives. The development of supported decision-making systems in parallel with the maintenance of substitute decision-making regimes is not sufficient to comply with article 12 of the Convention.’


The underlying philosophy of the NDIS is one of ‘consumer choice’. NDIS participation gives rise to new choices.

• How are people being supported to make choices? • To what extent are substitute decision makers (including nominees under

federal law, and guardians and administrators under state and territory laws) being appointed in order to enable NDIS choices to be made?

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 who has no family or other informal supporters, has the opportunity to move to new accommodation, and lacks capacity to make a decision about moving.

OPA (Vic)’s ‘Guardianship and the NDIS’ discussion paper

Role of nominees • Sometimes it will be important to have a nominee (or other substitute decision

maker). In addition to making decisions, nominees can have an important role in monitoring the implementation of a participant’s plan.

Differences between nominees and guardians • ‘The duties of state and territory substitute decision makers do not align with

that of Commonwealth appointed plan nominees, for example: » The role of a plan nominee does not delineate between a support

function and a substitute function …’

Australian Law Reform Commission

Equality, Capacity and Disability in Commonwealth Laws, Final Report, 2014.

Recommendation 5–2: ‘The National Disability Insurance Scheme Act 2013 (Cth) and NDIS Rules should be amended to include provisions dealing with supporters consistent with the Commonwealth decision-making model.’

Recommendation 5–3: ‘The National Disability Insurance Scheme Act 2013 (Cth) and NDIS Rules should be amended to include provisions dealing with representatives consistent with the Commonwealth decision-making model.’

Recommendation 5–4: ‘The National Disability Insurance Scheme Act 2013 (Cth) should be amended to incorporate provisions dealing with the process and factors to be taken into account by the CEO of the National Disability Insurance Agency in appointing representatives. These provisions should make it clear that the CEO’s powers are to be exercised as a measure of last resort, with the presumption that an existing state or territory appointee will be appointed, and with particular regard to the participant’s will, preferences and support networks.’

3. Transition to a nationally-consistent safeguards framework

COAG Agreement 2012

‘The existing Victorian quality assurance and safeguards framework … will apply in the Barwon launch site as it applies to the relevant new and existing funded client support programs for the launch subject to further development of and transition to a nationally consistent risk-based quality assurance approach in the longer term that does not diminish Victoria’s existing quality assurance system and safeguards.’ Intergovernmental Agreement for the NDIS Launch, Schedule B (bilateral agreement Commonwealth and Victoria), par. 15.


At State level in Victoria, our safeguards framework includes: • Community Visitors • Disability Services Commissioner • Senior Practitioner • Protections contained in a range of legislative provisions, including in the:

» Disability Act » Guardianship and Administration Act » Mental Health Act » Supported Residential Services (Private Proprietors) Act » Charter of Human Rights and Responsibilities Act

What should be contained in ‘a nationally consistent risk-based quality assurance approach’?


• Challenge in developing nationally consistent safeguards: » Should not lower safeguards in any jurisdiction » Should maintain, at a minimum, and ideally improve current protections

• National consistency is not easily achieved when significantly different protections exist throughout the country. For example:

» Does national consistency require all jurisdictions to create the equivalent of a Senior Practitioner (or even the appointment of a national Senior Practitioner) to monitor restrictive interventions?

» Or does national consistency (which is different to national sameness) require something broader, such as a requirement that restrictive interventions be authorised by an external agency?


OPA (Vic) 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 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. Investigations of situations of concern – broader investigation power for OPA

(Vic) and equivalents in other jurisdictions (where this power is not already held)


• Proposal for a National Disability Insurance Scheme Quality and Safeguarding Framework, consultation paper prepared by NDIS Senior Officials Working Group (for the Disability Reform Council (COAG)), February 2015

• Consultation open until 30 April 2015

• Decision then by COAG Ministers

Proposal for a National Disability Insurance Scheme Quality and Safeguarding Framework

Five elements of the proposed quality and safeguarding framework:

1. ‘NDIA provider registration’ 2. ‘Systems for handling complaints’ 3. ‘Ensuring staff are safe to work with participants’ 4. ‘Safeguards for participants who manage their own plans’ 5. ‘Reducing and eliminating restrictive practices in NDIS funded supports’


‘NDIA provider registration’ (4 options)

• ‘basic registration requirements’ • ‘additional registration conditions’ • ‘mandated independent quality evaluation requirements’ • ‘mandated participation in an external quality assurance system’


‘Systems for handling complaints’

• ‘How important is it to have an NDIS complaints system that is independent from providers of supports?’

• ‘Should an NDIS complaints system apply only to disability-related supports funded by the NDIS, to all funded supports, or to all disability services regardless of whether they are funded by the NDIS?’

• ‘What powers should a complaints body have?’ • ‘Should there be community visitor schemes in the NDIS and, if so, what

should their role be?’

Complaints: additional considerations

• How will people be supported and encouraged to complain? » Note the success of the Victorian Disability Services Commissioner’s

‘It’s OK to complain’ core message.

• Usual market protection mechanisms (including complaints and survey-based monitoring) do not apply in the same way to the provision of services to people with significant cognitive impairments.

• Monitoring general wellbeing can only be done by visiting the person.


• The Productivity Commission called for Community Visitors to be one aspect of the monitoring provided by the National Disability Insurance Agency, and suggested that OPA’s Community Visitors scheme should be the model for jurisdictions that don’t have an existing community visitors scheme (Disability Care and Support Inquiry Report, vol. 1, pp. 81, 509).

• Key here is our Community Visitors program’s: » Use of volunteers » Production of an annual report

• The advantages of Community Visitors is that they: » Are independent of service providers » Visit regularly and get to know individuals and communication styles


• There may be a need to specify in federal legislation that Community Visitors can visit when:

» NDIS funds are used for accommodation purposes, and » The provision of accommodation and support are connected and both

are managed by, or on behalf of, a disability service provider.


‘Ensuring staff are safe to work with participants’

• ‘Who should make the decision about whether employees are safe to work with people with disability?’

• ‘How much information about a person’s history is required to ensure they are safe to work with people with disability?’

• 4 options: » ‘risk management by employers’ » ‘requirement for referee checks for all roles and police checks for

certain employee roles’ » ‘working with vulnerable people clearances’ » ‘create a barred persons list’


‘Reducing … restrictive practices’

• ‘Who should decide when restrictive practices can be used?’ • 4 options

» ‘a voluntary code of practice’ » ‘substitute decision makers must be formally appointed guardians’ » ‘providers would be authorised to make decisions under specific

conditions’ » ‘restrictive practices could only be authorised by an independent

decision maker’


What’s not there?

There is no detailed discussion in the safeguarding framework paper about: • Supported and substitute decision making

» how people can be supported to make their own choices » when substitute decision makers (nominees under federal law,

guardians/administrators under state/territory laws) should be appointed

• Advocacy support • Investigating situations of concern

Advocacy

Access to advocacy support will be increasingly important as: • individuals will retain greater control over decision making and • some will require assistance to negotiate an ever-more complex service system

Investigating situations of concern

In addition to the existence of a formal complaints mechanism, who should investigate situations of concern (including allegations of wrongdoing and instances of neglect)?

• This is probably best organised at the state/territory level

• In Victoria the Office of the Public Advocate is the best placed to do this

Victorian Law Reform Commission, Guardianship Final Report (2012)

Recommendation 328. ‘… the Public Advocate should have the function of receiving and investigating complaints in relation to: (a) the abuse, neglect or exploitation of people with impaired decision‑making ability …’

Recommendation 329. ‘ … where the Public Advocate believes that an investigation is warranted she should be able to conduct an investigation on her own motion …’

Conclusion

• It’s important for us to think about how the consumer choice philosophy that underpins the NDIS is working in practice for people with cognitive impairments

» How are people being supported to make decisions? » When are decisions (formally or informally) being made for, rather than by,

participants?

• We are at a critical time in the development of the national safeguarding framework

• I hope this has given you a flavour of the debate that exists around the various safeguarding mechanisms that might be adopted

• Submissions are encouraged

Thank you

dr john chesterman office of the public advocate

Healthcare

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