dgreenwood gr 7oct2020 - urmc.rochester.edu...07/10/2020 © 2020 daniella greenwood 2 wake up ©...

07/10/2020

© 2020 Daniella Greenwood 1

Human Rights as a Practice Model in Long-Term Care

Daniella GreenwoodBachelor of Arts (Hons 1)Bachelor of Health science (Leisure & Health)Diploma of Diversional TherapyCert IV Leisure & Health

1© 2020 Daniella Greenwood

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• Long-term care - no one wants this for themselves

• The World Health Organisation highlighted that “People withdementia are frequently denied their human rights in both thecommunity and care homes” (WHO, 2017, p. 15)

• The Organization for Economic Co-operation and Developmentnoted that “the quality of care for people with advanced dementiais in many cases poor” (OECD, 2018)

• Royal Commission into Aged Care Quality and Safety

We Are Doing This Wrong


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“Of all tyrannies, a tyranny sincerely exercised for the good of its victims may be the most oppressive. It would be better to live

under robber barons than under omnipotent moral busybodies. The robber baron's cruelty may sometimes sleep, his cupidity may at some point be satiated; but those who torment us for our own good will torment us without end for they do so with the approval of their own conscience.”

C. S. Lewis

Paternalism


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Wake up


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Mum’s Putting On Weight


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Duty Of Care


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Institutional-structural violenceThis term is helpful in understanding the ways that biomedical andneoliberal paradigms are normalised leading to “business as usual” dehumanising practices (e.g. paternalism, medication and restraint abuses and so on) structuring interactions that appear “normativeor rational from the perspective of the dominant power group” (Barak, 2003, p. 135) but which constitute profound oppression and human rights abuses.

Normalised and Rationalised Dehumanising Practices


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• Excellent clinical care is not in a dichotomous or in a binary relationship with human rights and citizenship. Excellent clinical care where this is needed is fundamental to a human rights approach

• Pointing out the need to move beyond classifying the behaviours, moods, protests, and distresses of people living with dementia as “symptoms of dementia” is not a denial that these expressions occur

• Critiquing deficit-based systems and approaches to old age and dementia is not a denial of the disabilities that frequently accompany old age and dementia

Clarifications


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• Person centred and relationship centred care models

• Consumer directed care, choice and rights framework• Aged care standards, charter of rights, complaints mechanisms

• Culture change movement• Lifestyle, spiritual, psychosocial and arts-based programmes.

• Dementia training • Technology and product development

• New approaches to physical design

• Research

What has been tried?


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Policies, plans, legislation, programmes, interventions and actionsshould be sensitive to the needs, expectations and human rights ofpeople with dementia, consistent with the Convention on the Rightsof Persons with Disabilities and other international and regionalhuman rights instruments.

Specific actions for member states include building the “knowledge and skills of general and specialized staff in the health workforce” so that they are able to deliver “…human rights-oriented health and social care, including long-term care services for people with dementia”.

(WHO, 2017)

The Global Action Plan on the Public Health Response to Dementia


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The Australian Human Rights Commission defines human rights in the following way:• Human rights recognise the inherent value of each person,

regardless of background, where we live, what we look like, what we think or what we believe

• They are based on principles of dignity, equality and mutual respect, which are shared across cultures, religions and philosophies

• They are about being treated fairly, treating others fairly and having the ability to make genuine choices in our daily lives

Human Rights


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The general principles of the CRPD include:• Respect for inherent dignity, individual autonomy including the

freedom to make one’s own choices, and independence of persons

• Non-discrimination• Full and effective participation and inclusion in society• Equality of opportunity• Respect for difference and acceptance of persons with

disabilities as part of human diversity and humanity

(United Nations, 2006, p. 4).

United Nations Convention on the Rights of Persons with Disabilities


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Article 12 seeks to address the legacy of paternalism and thestripping away of human and citizenship rights associated withsubstitute decision-making. It outlines the rights of persons withdisabilities to enjoy “legal capacity on an equal basis with others inall aspects of life”, highlighting that people have a right to maketheir own decisions and to be provided with decision-makingsupport giving effect to their current will and preferences.

Article 12


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Principle 1: The equal right to make decisionsAll adults have an equal right to make decisions that affect their lives and tohave those decisions respected.

Principle 2: SupportPersons who require support in decision-making must be provided withaccess to the support necessary for them to make, communicate andparticipate in decisions that affect their lives.

Principle 3: Will, preferences and rightsThe will, preferences and rights of persons who may require decision-makingsupport must direct decisions that affect their lives.

Principle 4: SafeguardsLaws and legal frameworks must contain appropriate and effectivesafeguards in relation to interventions for persons who may require decision-making support, including to prevent abuse and undue influence.

National Decision-Making Principles


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• Deeply ingrained medical assumptions and paternalism in residential aged care

• Focus on efficiencies

• Institutional routines, practices, policies and traditional operational and staffing approaches

• Regulative focus on choice and personalised care• Compliance anxiety

• Resident meetings, quality audits, surveys, co-design methodologies not designed to accommodate all abilities

Barriers to Human Rights in Residential Aged Care


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• It is just assumed that others will ‘have a say’ even in minute areas of day-to-day life• Next of kin used as a catch all – no link to actual legal powers

or even capacity

• Lack of clarity around privacy and decision-making in reference to family

• No threshold established• Culture change initiatives

• Research and evidence-based everything• Dementia training and approach to behaviours and expressions

Barriers to Human Rights in Residential Aged Care


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• Human rights approach informed by the CRPD1. Operational non-negotiables2. Practice non-negotiables3. Clarify Article 12 for everyone – from day one

• Human rights assessment tool and map of resident journey to locate misalignments with the CRPD in three areas:

1. Attitudes, beliefs and assumptions

2. Existing policies, quality mechanisms, operations

3. External pressures (standards, legislation, legal powers, family)

Developing a Human Rights Approach


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A resident with Parkinson’s Disease and moderate cognitive impairment could be found each day extremely distressed and smashing on the front door of the home to get out. All he wanted was to go to the local yacht club, which was in walking distance, for a few hours as he had done his entire working life. Each week day he had enjoyed a few cold beers with friends while admiring the view of his yacht and the ocean. It was assessed that it was not safe for him to go on his own. Long-term care is not funded to provide this type of 1:1 support. External behaviour experts made some recommendations including offering him a drink or distracting him with a walk around the home. Family rejected the managers suggestion that the man’s own financial resources be used to hire someone to assist him to the club each afternoon. Two weeks later the man lost balance while trying to open the front door and ended up in hospital with a broken hip.

Case Study

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• Dedicated human rights executive with codified authority above clinical

• Human rights ethics committee

• Comprehensive training and orientation

• Solidarity as the defining characteristic of staff practice and of staff-resident relationships and interactions

“Solidarity…the capacity to identify with others and to act in unity with them in their claims for justice and recognition” (Kabeer, 2005, p. 8).

Developing a Human Rights Approach


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• Requires a revolution informed by the CRPD

• Courageous institutions and individuals who feel supported in calling out injustice

• Human rights – humility

“Despite significant research efforts, much about the condition remains a mystery. No treatments have yet been developed that can effectively cure or halt the progression of dementia.”

(OECD, 2018, p. 11)

Final Thoughts


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Thank you

Daniella Greenwood

[email protected]


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Australian Law Reform Commission (2014). Equality, Capacity and Disability in Commonwealth Laws. Sydney: ALRC.

Barak, G. (2003). Violence and Nonviolence: Pathways to understanding. London: Sage Publications.

Kabeer, N. (2005). Introduction: the search for inclusive citizenship. In N. Kabeer (Ed.), Inclusive Citizenship (pp. 1−27). London & New York: Sage

Lister, R. (2007). Inclusive citizenship: Realizing the potential. Citizenship Studies, 11(1), 49–61.

OECD (2018). Care Needed: Improving the lives of people with dementia. Paris: OECD Publishing.

United Nations (2006). Convention on the Rights of Persons with Disabilities. New York: UN.

World Health Organization (2017). Global Action Plan on the Public Health Response to Dementia 2017–2025. Geneva: WHO.

Reference List


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