Advocacy – a Human Right? Disability Action’s Centre on Human Rights Monday 18 April 2011

Advocacy – a Human Right?

Disability Action’s Centre on Human Rights

Monday 18 April 2011

Welcome

Monica Wilson, Disability Action

The Role of an Advocate

Sinéad McGeeney Disability Action’s Centre on Human Rights

The Role of an Advocate

Introductions

• Who am I?

• Why am I here?

Access to Justice

• Uniquely expressed in CRPD, Article 13

• Includes component rights e.g. right to an effective remedy

• States must provide ‘procedural accommodations’

• Extension of equality before the law, links between Articles 12 and 13

• Analogy with legal representation

Advocacy?

Having someone who listens to you

Helps you understand

Advocacy is speaking up

Advocacy?

Helping you be heard

Ensure you have informed choices

Is about trust

Advocacy?

Helping us understand our rights

Not allowing us to be excluded

Not telling us what to do

Advocacy?

Definitions of Advocacy

“Advocacy is taking action to help people say what they want, secure their rights, represent their interests and obtain services they need. Advocates and advocacy schemes work in partnership with the people they support and take their side. Advocacy promotes social inclusion, equality and social justice”.

Action for Advocacy

Definitions of Advocacy

“ Advocacy is the act of speaking up for

people who are not being heard and

supporting them to express their own views

and ultimately, where possible, to make

their own decisions and take control over

their lives.”

Department of Health, Social Services and

Public Safety

Types of Advocacy

•Independent Advocacy

•Group Advocacy

•Peer Advocacy

•Non Instructed Advocacy

Clarifying the role of the Instructed Advocate

Listening to the individual and talking honestly about options available

Ensuring both you and the individual have all the relevant information to ensure informed choice

Defining agreed outcomes and timescales

Clarifying the role of the Non-Instructed Advocate

Always presume capacity

Communication is key

Ensure the service providers always provide a person centred and multi-disciplined approach

Principles & Standards of Advocacy

Advocacy must have standards

The Advocacy Charter:

Making things clear and simple

Principles & Standards of Advocacy

Empowerment

Putting people first

Accountability

Importance of advocacy for people with disabilities

Choice= responsibility=dignity=self-esteem

= = =

www.disabilityhumanrights.orghumanrights@disabilityaction.org

The Importance of Advocacy Services for People with Disabilities

  Advocacy- a human right?

      Dr Eilionóir Flynn

Centre for Disability Law and PolicyNUI Galway

Dr. Eilionóir FlynnCentre for Disability Law and PolicyDisability Action Seminar 18/04/11

Advocacy: A Human Right?

Overview

Nature and purpose of advocacy – supporting equal citizenship

An implied right to advocacy in IHRL: equality before the law and access to justice

How to frame the right to advocacy at domestic level: respect for autonomy, independence of advocates, participation of disabled people

Forms of Advocacy

Informal ---------------------------------------- Formal

Individual ------------------------------------- Systemic

Self advocacy ----------------------------- Representative

Stone’s Advocacy Models

Stand before

Stand behind

Stand beside

Nature of Advocacy

Advocacy has become a key element in any move to promote independence and choice in the lives of those who are marginalised

Defined as a process of enabling people to have a voice about matters of concern to them

Not about overcoming inadequacies in the system but rather to empower people by supporting them to assert their views and claim their entitlements and, where necessary, represent and negotiate on their behalf

Purpose of Advocacy

Accessing essential social supports, information, making complaints or pursuing rights of appeal

Less restrictive alternative to guardianship/substitute decision-making

Advocacy Supporting Citizenship

Morris: access, self-determination, participation, and the opportunity to meaningfully contribute to society

Marshall: civil (individual freedom, access to justice), political (link to visibility) and social citizenship (adequate standard of living)

An Implied Right?

Many sources for right to advocacy in international human rights law

Socio economic rights Access to Justice Human Dignity CRPD – right to autonomy and

participation Strongest sources: equality before the

law and access to justice

Equal Recognition Before the Law

Article 12, CRPD Overarching Right to Equality, contains

subsequent rights e.g. presumption legal capacity

Not exhaustive list, interpret with general principles: individual autonomy and independence, including the freedom to make one’s own choices

Continuum of Support

Advocacy

Supported decision making

Substitute decision making

Access to Justice

Uniquely expressed in CRPD, Article 13 Includes component rights e.g. right to

an effective remedy States must provide ‘procedural

accommodations’ Extension of equality before the law,

links between Articles 12 and 13 Analogy with legal representation

Counter-arguments

Don’t need a right to advocacy to achieve these aims?

A right to advocacy means advocacy becomes over-professionalised and privileges formal, representative advocacy over other forms?

Domestic legislation on Advocacy

Return to purpose: get advocacy recognised as a form of access to justice and as a support to exercise capacity

Take guiding legislative principles from norms in CRPD: autonomy, independence and participation of disabled people in developing, doing, and monitoring advocacy

Autonomy

Advocates must presume capacity, not act on perceived ‘best interests’

Advocates are not determinators of capacity People who do not have a system of

communication recognised by the advocate?

Communicate, observe and consider the person’s life plan, and how work of advocate fits within it

Independence

Loyalty to represented person Free from conflict of interest (vested

interests e.g. service providers, family members, state bodies, and others)

Legislative safeguards to protect independence – and Code of Practice/Ethics

Also, need legal powers to act, to carry out work, to ensure co-operation with advocate

Participation

Preamble, Article 4(3), Article 29, Article 30

Disabled people as advocates Advocates in unique position to feedback

on discriminatory/unjust practices, systems, etc – this should be taken into account in structure

Location and respect for statutory advocacy crucial

Conclusion

Potential to embed a ‘dynamic of change’ envisaged in the CRPD

Cultural change and practical grassroots work to ensure sustainability of Convention’s ideals

Tea / Coffee Break

Supporting people with disabilities to achieve  their human rights

Dr Colin M Harper Disability Action’s Centre on Human Rights

Contents

• An Introduction to Disability Action’s Centre on Human Rights

• Our Advocacy Service

• What is human rights advocacy?

• How a human rights advocate can help?

• Examples of previous cases

An Introduction to Disability Action’s Centre on Human

Rights• Set up in 2006.

• Aim: To secure the human rights of people with disabilities in Northern Ireland.

• Our Work: Training, Outreach, Lobbying, Campaigning, Policy, Research and Advocacy.

Our Advocacy Service

• Supporting people with disabilities to take action to achieve their human rights

• Pan-disability focus• Crisis advocacy• Experience in supporting people with multiple

disabilities• One full-time advocate plus Centre Manager• Dealt with over 250 cases since 2008

What is human rights advocacy?

• Supporting people with disabilities to take action to secure their human rights.

• Increasing awareness of the human rights of people with disabilities and the principles underpinning the human rights of people with disabilities:

– Respect for inherent dignity, individual autonomy including the freedom to make one's own choices, and independence of persons;

– Non-discrimination;

What is human rights advocacy?

– Full and effective participation and inclusion in society;

– Respect for difference and acceptance of persons with disabilities as part of human diversity and humanity;

– Equality of opportunity; – Accessibility; – Equality between men and women; – Respect for the evolving capacities of children

with disabilities and respect for the right of children with disabilities to preserve their identities.

Why human rights advocacy?

• Human Rights Act (1998)

• United Nations Convention on the Rights of Persons with Disabilities (2008)

• But physical, cultural, social and attitudinal barriers exist which prevent people with disabilities from accessing the same rights as non-disabled people.

Why human rights advocacy?

Barriers include:

• Making decisions about their lives;• Living independently;• Getting an education;• Getting into and retaining employment;• Obtaining an adequate standard of living;• Getting around; and• Being included in society.

Why human rights advocacy?

In these situations, it is important to:

• Understand your rights;

• Know the options available to you to overcome these barriers; and

• Feel empowered to take action and speak up for your rights.

This is how a human rights advocate canhelp.

How a human rights advocate can help

• Understand their human rights.• Listen to someone and explain the options

available to them.• Support someone to make a decision on these

options.• Help them to develop an action plan. • Support them as needed to represent their

interests and explain what they want.

How a human rights advocate can help

• For non-instructed advocacy, a human rights advocate works to:

- uphold the person’s rights;- ensure fair and equal treatment;- ensure access to services;- try to understand the person’s preferences;

and- ensure decisions take account of these

preferences.

Examples of previous cases

Case 1:

• Wheelchair user with cancer unable to access hospital owned accommodation for cancer patients and their spouses.

• Her right: to access all aspects of society on an equal basis with others including buildings and facilities and services provided to the public.

Examples of previous cases

How the advocate helped:

• Explained her rights• Liaised with the hospital• Determined that the accommodation was

accessible for the client• Advised client of options available to her• Supported the client through disability

discrimination claim• Acted as a witness at the tribunal

Examples of previous cases

Outcome: • Tribunal upheld claim & precedent set

Examples of previous cases

Case 2:

• Teenager with multiple disabilities including ASD and mental health disability.

• Detained under Mental Health Order.• Staff failed to understand the effect of her

multiple disabilities.• Lack of support in school and in community

which resulted in deterioration of mental health. • Multi-disciplinary meetings poorly attended- lack

of joined up support.

Examples of previous cases

How the advocate helped:

• Highlighted client’s issues to the hospital, explaining the effect of her multiple disabilities and adjustments required

• Explained the importance of attending multi-disciplinary meetings to those involved and coordinated the development of joined up provision of support for the client.

Examples of previous cases

How the advocate helped (continued):• Negotiated new arrangements for her client

with Social Services and the Education &

Library Board

Outcome:• Hospital respondent positively• New support package in place• Client returned to school and obtained GCSEs

before progressing on to college.

Examples of previous cases

• Children with disabilities• Women with disabilities• Child custody• Hate crime• Personal mobility• Employment• Capacity to consent• Independent living

Contact an Advocate:

Disability Action’s Centre on Human RightsPortside Business Park189 Airport Road WestBelfastBT3 9EDTelephone: 028 9029 7880Textphone: 028 9029 7882Email: humanrights@disabilityaction.orgVisit: www.disabilityhumanrights.org

Questions & Answers

Closing Comments

Monica Wilson, Disability Action

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