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?
Advocacy?
Advocacy is speaking up
Having someone who listens to you
Helps you understand
Advocacy?
Is about trust
Helping you be heard
Ensure you have informed choices
Advocacy?
Helping us understand our rights
Not allowing us to be excluded
Not telling us what to do
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
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Choice= responsibility=dignity=self-esteem
www.disabilityhumanrights.org
humanrights@disabilityaction.org
The Importance of Advocacy Services
for People with Disabilities
Advocacy- a human right?
Dr Eilionóir Flynn
Centre for Disability Law and Policy
NUI Galway
Advocacy: A Human Right?
Dr. Eilionóir Flynn
Centre for Disability Law and Policy
Disability Action Seminar 18/04/11
Overview
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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
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Stand before
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Stand behind
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Stand beside
Nature of Advocacy
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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
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Accessing essential social supports, information,
making complaints or pursuing rights of appeal
Less restrictive alternative to
guardianship/substitute decision-making
Advocacy Supporting Citizenship
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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?
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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
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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
Substitute
decision making
Supported
decision making
Access to Justice
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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
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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
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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
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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
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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
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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
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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
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What is human rights advocacy?
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How a human rights advocate can help?
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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:
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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 can
help.
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 multidisciplinary 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
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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 Rights
Portside Business Park
189 Airport Road West
Belfast
BT3 9ED
Telephone: 028 9029 7880
Textphone: 028 9029 7882
Email: humanrights@disabilityaction.org
Visit: www.disabilityhumanrights.org
Questions & Answers
Closing Comments
Monica Wilson, Disability Action
Evaluation Forms
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