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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
= = =
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: [email protected]: www.disabilityhumanrights.org
Questions & Answers
Closing Comments
Monica Wilson, Disability Action
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