Quality Standards for Support and Advocacy Work with Older People

Dr. Michael Browne. 16th October 2015.

Outline of Presentation

1. If Advocacy is the Answer, What is the Question?

2. Some Critical Considerations

3. The Six Standards and their Components

4. Some Key Challenges

What Support and Advocacy Means• Safeguarding people’s legal rights and basic human rights

• Enabling individuals and groups to have control over their lives

• Helping people to know what choices they have and the likely consequences of these choices

• At its most basic level, enabling people to tell other people what they want

If Advocacy is the Answer, What is the Question?

• What are the components of the rights-based Framework that underpins Support and Advocacy?

• 7 inter-related and overlapping components can be identified

The Question, I suggest is:

A Rights Framework for Quality Standards for Support & Advocacy Work

Recognition

Self-realisation

Equality

Capabilities

Citizenship and Social Inclusion

Agency

Voice

Rights Component 1: Recognition

• The esteem that one feels based on the respect that is afforded by others.

• Any individual needs to be able to observe and feel that s/he has a recognised identity, experiences a sense of belonging and is given due regard by others.

• Three spheres of recognition (Axel Honneth 2003)

(i) Primary relationships of positive regard and reciprocity

(ii) Legal recognition involving rights and duties (iii) Each individual being able to experience valued and respected social roles

Rights Component 2:Citizenship and Social Inclusion

• The “umbilical connection between rights and citizenship”(Moyn 2010)• The right of individuals “to live the life of a civilised being

according to the standards prevailing in society” (Marshall 1950)• A redressing of imbalances in market outcomes • Access to resources, as well as to opportunities to participate in

society• Feelings of belonging in the broad sense of national identity• Attachment to and engagement with neighbourhood/community

Rights Component 3: Agency

• The ability of a person to act, make choices and decisions and express views.• People, irrespective of their cognitive ability, need to be

able to exercise individual agency by participating in critical decisions that affect their lives.• Need to change from a deficits view of individual agency to

one that embraces more social, relational and collaborative dimensions• Expanding horizons in relation to the way people with

dementia or other cognitive impairment are to be engaged in decision-making and choices

Rights Component 4: Voice

• The right of a person to express his/her views freely in all matters affecting him/her, e.g.,

• Choosing where and with whom you live

• Control over one's accommodation, daily routines, activities, and general life direction

• Opportunities at all stages of the life-cycle for participation in valued activities

• Crucial distinction between 'decisional autonomy' and the 'autonomy of execution’.

Rights Component 5: Capabilities

• Being able to be treated as a dignified being whose worth is equal to that of others• Being able to love those who love and care for us and being

able to grieve at their absence• Being able to experience longing, gratitude, and justified

anger• Being in a position not to have one's emotional development

blighted by fear or anxiety • Being able to engage in critical reflection about the planning

of one's own life(Martha Nussbaum, Frontiers of Justice)

Rights Component 6: Equality

• All members of a society equally enabled to maximise their potential.• The needs of each and every individual are of equal

importance

“While people may differ profoundly in capacity, character and intelligence, they are equally entitled as human beings to consideration and respect and that when that happens, the wellbeing of a society is likely to be increased” (R. H. Tawney 1931).

Rights Component 7: Self-realisation

• The development of the human person in all his/her dimensions.

• People coming to think of themselves as unique individuals with chosen rather than prescribed or standard identities

• Being able to envision the future • Active ‘Retirement’ Planning; Exploring alternative housing

options; Advance Care Directives, Enduring Power of Attorney and the Think Ahead resource

Five Key Considerations

• The need for an ethical framework• The right to self-determination• Risk assessment and management in the context of

a rights approach• Support and advocacy in the context of

safeguarding people who may be at risk• Distinguishing between legal capacity and mental

capacity

The Need for an Ethical Framework• Ethics is concerned with questions about what is morally right

in a particular situation

• In some situations, there may be several options, none of which is unambiguously right

• Key factors to be taken into account (Nuffield Council on Bioethics):

- A person’s wishes, values and general well-being - Some sense of fairness or justice

The Right to Self-Determination

• Presumption of capacity

• Older persons are entitled to lead their lives independently, in a self-determined and autonomous manner (Council of Europe Statement on the Rights of Older Persons)

• This principle underpins the assisted decision-making legislation

Risk assessment and management in the context of a rights approach

• Risk assessment and management a matter of considerable importance and has not to date received adequate attention• The environmental context of vulnerability rather than the

individual context has been emphasised (Dr. Hoong Sin)• Risk not simply due to disability or characteristics of the

person, but

-Related to the social and environmental context within which a person lives and to relationships

Rights Safeguarding

• ‘Non-instructed’ advocacy but this is a somewhat contested term• Four distinct yet complementary approaches to advocacy in

a safeguarding role have been identified.

1. The Human Rights Approach2. Person-Centred Approach3. Watching Brief 4. Witness-Observer

Distinguishing between Legal Capacity and Mental Capacity

• Legal capacity is conceptually very different from mental capacity

• Legal capacity is the ability to hold rights and duties (legal standing) and to exercise these rights and duties (legal agency)

Mental capacity refers to the decision-making skills of a person, which vary from one person to another (UN Committee on the CRPD).• ‘Term ‘mental capacity’ in the Assisted Decision-Making

(Capacity) Bill 2013 changed at Committee Stage to ‘decision-making capacity’.

The Six Quality Standards

1. RespectReflecting the right of every person to be treated with dignity, including each individual’s right to privacy, confidentiality and self-determination.2. Social JusticePromoting equal treatment with other people in respect of access to basic goods, services and protections and a positive affirmation of social solidarity.3. Competence and CompassionDemonstrating high levels of skill, competency, compassion and consistency on the part of advocates.

The Six Quality Standards

4. AccessibilitySupport and advocacy available in a manner that is convenient and easily accessible to people who require it.

5. IndependenceStructurally, operationally and psychologically independent from health and social care service providers and representing only the will and preferences of people receiving support.

6. AccountabilityActing with integrity and responsibility and engaging with people who use the service and with other stakeholders in an honest and transparent manner.

What the Standards Provide

• An outline of best practice in providing support and advocacy • A vision for support and advocacy work based on sound principles• A value-based benchmark against which the functioning of advocacy

providers and the practice of advocates can be measured;• An identification of best practice in respect of enabling individuals to

exercise their will and preferences in accordance with people’s basic right to self-determination;

What the Standards Provide

A menu of support actions:

(a) To empower people to articulate their needs and have their voices heard, and

(b) To safeguard the rights of individuals who are vulnerable for one reason or another

What is Included in the Section on Standards

• The Six Standards

• Four Components under each Standard

• What is Expected from Advocates under each Component

• What is Expected from Advocacy Providers under each Component

• Expected Outcomes for people who use the Support and Advocacy Service under each Component

• Indicative Evidence of Compliance for each Standard (Supporting Policies and their Practical Application)

(SAGE has detailed policies and operational guidelines)

Respect: The 4 Components

• People treated with dignity and respect in all interactions

• People’s autonomy and right to self-determination protected • All personal information, whether obtained directly or

indirectly, treated in strict confidence

• Empowerment of individuals a core value

Social Justice: The 4 Components

• An underpinning human rights perspective in all engagement with people

• A focus on social inclusion

• Each person recognised as having equal rights before the law

• Recognition of and respect for diversity

Competence and Compassion: The 4 Components

• Advocates adequately trained, supported and supervised in their work

• Adherence by Advocates to agreed Codes of Practice

• Advocates working consistently to high quality standards

• Total clarity of advocacy role and boundaries

Accessibility: The 4 Components

• Service available in a timely and equitable manner • Service promoted so that potential users are aware of it

• Proactive in seeking out hard-to-reach people and those who might have difficulty self- referring • Information about the service fully accessible to all groups

and individuals

Independence: The 4 Components

• Service structurally and operationally independent

• Advocacy providers and advocates free from conflict of interest

• Clear boundaries between advocates and health/social care services staff

• Collaboration by advocates with other health/social care providers

Accountability: The 4 Components

• The Support and Advocacy Service accountable to the people who use the service

• Service effectively managed and transparent governance structures in place

• Adherence to all legal requirements

• Underpinned by human rights provisions and equality legislation

Integrating Independent Support and Advocacy: What is Required

• Policies and practice that respects the rights of people individually and collectively

• Integrating an ethos of independent support and advocacy within the health/social care setting

• Acknowledging the importance of rights safeguarding • Understanding the multiple roles of advocates • Entering into a Service Agreement/Memorandum of

Understanding with an Advocacy Provider• Having a particular focus on people who may not be able

to self-refer to advocates

Five Case Scenarios

• A person being discharged from an acute hospital wishing to live at home

• A person in a nursing home getting access to his social welfare payment

• A person living in the community needing support to protect his rights

• A person transferring from an nursing home to an acute hospital

• A person with dementia living at home with a relative.

What the Case Scenarios Show • How the Quality Standards apply in different

situations and contexts• The complexity of the support and advocacy

process• The need for a systematic and balanced approach

by the advocate • The need to take full cognisance of people’s basic

rights and to facilitate their will and preferences

Concluding Comments

Need for a Change in Narrative:

• From tokenistic gestures towards people’s rights to full legal and institutional protection of those rights

• From people with dementia as a group/category to individual personhood as a central tenet/core value

• From older persons as a specific identity group to vulnerability across the life-cycle

A New Narrative

• From minimum standards in service provision to enhancing quality of life across all life domains

• From sectional interests to intergenerational solidarity

• From benevolence to justice

Re-configuring the Narrative

“By questioning past practices and by revealing present practices, we cause a shift or a tremor and draw attention to ‘what could or should be’ (Moira Gatens 2004).

These Standards can help to progress the ‘what could or should be’ agenda.

‘If Advocacy is the Answer… …..What is the Question?’

While Advocacy and has a significant role to play, and while these Standards can help in that regard, it is almost certain that:

The question remains as important as the answer.

SAGE and other similar organisations have a crucial role to play in continuing to ask that question.

Values, Standards & Law“Too often we see the issues facing older people as related solely to health and social care. In doing so we can sometimes forget the fundamental importance of values, standards and the law in determining the wellbeing of citizens”Mary Laffoy. Judge of the Supreme CourtOctober 2015

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