Disability, Ageing and Advocacy 11 September 2012 John Chesterman Manager, Policy and Education

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 3 volunteer programs »Community Visitors program »Independent Third Person program »Community Guardianship program advocates (individual and systemic) provides an advice service delivers community education

Overview Guardianship Challenges to ageing in place Advocacy Big issues in disability Big issues in aged care Victorian Law Reform Commission Guardianship Final Report

Guardianship - background trends Increasing societal trend to require formal decision-making authority (risk transfer). Increasing guardianship numbers. 2008/09: /10: 1574 (749 new) 2010/11: 1730 (905 new) 2011/12: 1708 (884 new) OPA waiting list Rising numbers of clients with dementia (34%). 53% of our new clients are 65 years of age or older. Clear link between ageing and disability. Many guardianship clients over 65 years of age are in hospital. Report underway at OPA about decisions OPA makes for people in hospital (and the delays involved).

Victorian Law Reform Commission projections Guardianship Final Report, p. 37. ‘[The Centre for Population and Urban Research] suggests that the number of people under the guardianship of the Public Advocate is likely to increase to 1958 people in 2020 and to 2486 in 2030, an increase of 25 per cent from 2010 to 2020 and an increase of 27 per cent from 2020 to 2030.’

Guardianship at OPA Over half of OPA’s guardianship clients are people who once had capacity people with dementia (34%) mental illness (20%) acquired brain injuries (17%) The paradigmatic disability in the minds of the authors of the original (1986) guardianship legislation was lifelong intellectual disability. VLRC proposes that substituted judgement be the norm and that renewed emphasis be given to encouraging people to think about completing advance directives.

Guardianship When does VCAT appoint a guardian? When there has been no personal appointment Three criteria satisfied: »The person has a disability »The person is unable because of this disability to make ‘reasonable judgements’ »The person is in need of a guardian Often a person comes to guardianship if there is conflict over their care, or if there is no-one in the person’s life to help make decisions.

Challenges to ‘ageing in place’ Organisational risk Skill sets Decline in availability of other ‘informal’ support »Ageing population »Smaller families »More complex families »Patterns of work (longer hours)

Advocacy Formal substitute decision making appointments of guardians are relatively rare. ACU/Latrobe project: encourage advocacy so that people can age in place. Advocacy can achieve a lot!

Big issues in disability Usage of restrictive interventions on people with disabilities in supported accommodation. Where disability service providers use these, they are required by the Disability Act to report this to the Office of the Senior Practitioner. We have concerns about: The high use of ‘chemical restraints’, particularly those which are not reported as such (when they are said to be in use to treat a medical condition). Often we believe this is more about behaviour modification than treatment (and therefore should be seen as a restrictive intervention). The ‘independent person’ safeguard. Violence against people with disabilities ‘Voices against violence’ project (OPA and Women with Disabilities Victoria). Victorian Parliament Law Reform Committee report (concerning people with cognitive impairment and the justice system) due November OPA guideline project (responding to the abuse, exploitation and neglect of at-risk adults). NDIS Place of substitute decision making under the ‘consumer’ model? Monitoring of pilot launch site in Barwon from July Community Visitors’ role?

Big issues in aged care Usage of restrictive interventions on people in aged care facilities (especially ‘chemical restraints’, i.e. drugs used to treat behaviours rather than medical conditions – anti-psychotics, anti-libidinals). Where disability service providers use these, they are required by the Disability Act to report this to the Office of the Senior Practitioner. A similar system does not exist for aged care. Deprivations of liberty of people in aged care facilities (without specific legal authorisation). This is also a problem in the disability sector, and the Victorian Law Reform Commission has recognised this and proposed one solution.

Victorian Law Reform Commission Guardianship Final Report (2012) Minimise state-directed substitute decision making Guardianship orders to be limited as far as possible to decisions that need to be made (with one exception) Prevention of, and response to, abuse Mandatory registration of personal appointments Broader investigation powers for OPA (where a person with a disability is subject to abuse, neglect or exploitation) Civil penalties for breaches of guardianship legislation Supported decision making to be preferred Several supported decision-making initiatives New supported decision-making volunteer program to be hosted by OPA

VLRC, Guardianship Final Report Substituted judgement Recommendation 285. When guardians/administrators are appointed: substituted judgement should be their main consideration (what the person would themselves have decided).

VLRC, Guardianship Final Report Instructional directives Recommendation 134. ‘An instructional directive should be able to provide: (a) binding instructions or advisory instructions about health matters (b) binding limitations or conditions or advisory instructions about personal and lifestyle matters …’ Recommendation 135. [Instructional directives would replace the refusal of treatment certificate]. Recommendation 139. ‘The principal should be able to make instructional health care directives about future as well as current conditions.’

VLRC, Guardianship Final Report Restrictions on liberty Recommendation 241. ‘The collaborative mechanism for authorising restrictions upon the liberty of people who are living in supported residential care and who lack the capacity to consent to restrictive living arrangements that are used to promote their health or safety should require the approval of three people, who are: (a) the person in charge of the residential facility (b) a medical practitioner or other health practitioner approved by regulation (c) the person’s health decision maker.’ Recommendation 251. ‘The collaborative mechanism … should not be used in circumstances where the person concerned consistently resists and opposes restrictions upon their liberty.’ Recommendation 258. ‘The Public Advocate should issue guidelines to assist people involved in the collaborative authorisation process …’

VLRC, Guardianship Final Report Medical Treatment Recommendation 214. ‘New guardianship legislation should provide that if a person is unable to consent to “significant treatment”, the registered practitioner may undertake that procedure only with the consent of: (a) a personal guardian … or … (b) a health decision maker … or … (c) the Public Advocate.’ Recommendation 215. ‘New guardianship legislation should provide that if a person is unable to consent to a “routine procedure”, the registered practitioner may undertake that procedure: (a) with the consent of a personal guardian … or … (b) with the consent of a health decision maker … or … (c) in the absence of consent if the registered practitioner has taken reasonable steps to locate a personal guardian or a health decision maker and the registered practitioner believes the treatment will promote the personal and social wellbeing of the person concerned.’

Medical Treatment Note: OPA’s suggestion is to extend the guardianship legislation’s definition of ‘significant medical treatment’ to include the decision to be discharged from hospital. This would enable the statutory appointment scheme (currently the ‘person responsible’ scheme, which the VLRC wishes to rename the ‘health decision maker’ scheme) to apply to discharge decisions. This would limit the use of guardianship for discharge decisions.

VLRC, Guardianship Final Report Supported decision making to be preferred Recommendation 32. ‘A person should be able to appoint a personal supporter or financial supporter through a written “supported decision ‑ making appointment” if they have the capacity to do so.’ Recommendation 35. ‘VCAT should be able to appoint a personal or financial supporter to assist a person …’ Recommendation 64. ‘VCAT should be able to appoint a co ‑ decision maker to assist a person in need of decision ‑ making support.’ Recommendation 62. OPA should host a pilot volunteer supported-decision making program.