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The Role and Potential of Advocacy for People with Disabilities

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Title: Advocacy for People with Disabilities Author: Researcher No 2 Last modified by: Researcher No 2 Created Date: 6/3/2010 2:21:04 PM Document presentation format – PowerPoint PPT presentation

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Title: The Role and Potential of Advocacy for People with Disabilities


1
The Role and Potential of Advocacy for People
with Disabilities
  • Ireland and elsewhere
  • Eilionóir Flynn
  • Centre for Disability Law and Policy

2
Overview
  • Nature and purpose of advocacy
  • Human rights norms which underpin a right to
    advocacy
  • Legislative and policy framework for advocacy in
    Ireland
  • Assessment of compliance with international human
    rights norms
  • Recommendations for reform

3
Advocacy Definitions
  • Speaking, acting, writing, for individual or
    group
  • On behalf of a sincerely perceived interest
  • With minimum conflicts of interest
  • To promote, protect and defend their welfare, and
    secure justice
  • Advocacy is emphatic and vigorous (Wolfensberger)
  • A means of empowering people by supporting them
    to assert their views and claim their
    entitlements and where necessary representing and
    negotiating on their behalf (Citizens Information
    Board)

4
Nature of advocacy
  • Linked to the notion of civil society and of the
    citizen as one who takes responsibility not just
    for him or herself but for his / her neighbour
    and for the process of change
  • The key which will unlock entitlement to services
    for those who are often bewildered by the
    bureaucratic complexity of access to social and
    other state services
  • Jigsaw of Advocay (2003)

5
Purpose of advocacy
  • Accessing essential social supports, information,
    appealing refusal of service provision
  • Less restrictive alternative to
    guardianship/substitute decision-making

6
Forms of Advocacy
  • Informal ----------------------------------------
    Formal
  • Individual -------------------------------------
    Systemic
  • Self advocacy -----------------------------
    Representative

7
Stones Advocacy Models
  • Stand before
  • Stand behind
  • Stand beside

8
Types of advocacy regulated in Ireland
  • Statutory advocacy Personal Advocacy Service
    (PAS), Citizens Information Act, 2007
  • Community and voluntary advocacy, funded by
    Citizens Information Board, in accordance with
    Advocacy Guidelines 2007

9
Why is a right to advocacy necessary?
  • Potential vulnerability existing barriers to
    participation
  • Ineffective current legal solutions based on
    paternalism
  • Advocacys contribution progressing the
    paradigm shift from welfare to human rights

10
Sources for a Right to Advocacy
  • Generic human rights norms
  • Access to Justice
  • Socio-economic human rights
  • Human dignity principle
  • Specific commitments in CRPD
  • Autonomy rights (self determination, capacity)
  • Participatory rights (public sphere,
    socio-economic)

11
Access to Justice
  • Art 13, CRPD, Art 2(3) ICCPR, Art 8, UDHR
  • Stems from concept of equal citizenship
  • Construed broadly access to the systems,
    procedures, information, and locations used in
    the administration of justice (Lord et al, 2009)
  • Encompasses the right to an effective remedy for
    past breach of rights
  • The ability to access justice is of critical
    importance in the enjoyment of all other human
    rights

12
Socio-economic rights
  • GC 5, CESCR, Vienna Declaration pt 5, Art 12,
    ICESC
  • Human rights are indivisible civil, political,
    social, economic and cultural
  • Advocacy as an aspect of progressive realisation
    ensuring that these rights can be enforced
  • the connection between access to justice,
    appropriate service delivery and enjoyment of
    human rights is becoming clearer (Noone and
    Curran, 2007)

13
Human dignity
  • an expression of the respect and value to be
    attributed to each human being on account of his
    or her humanity. It concerns the protection of
    and respect for the essence or nature of the
    human being per se - that is to say, the
    substance of mankind
  • Stix-Hackle, 2004
  • Is it a value, principle or legal right?
  • Certain definitions of dignity and dignified
    behaviour can reinforce paternalism

14
CRPD General aims
  • Embed dynamic of change at domestic level
  • Advocacy is an effective rights-enforcement tool
    for people with disabilities at domestic level
  • Visibility project the human rights of people
    with disabilities
  • Advocacy contributes to systemic change

15
CRPD Autonomy Rights
  • Art 12, access to support in exercising legal
    capacity
  • Need for less restrictive alternatives to
    substitute decision-making
  • Advocacy support throughout guardianship process
    to ensure human rights respected
  • Involving person in decisions made concerning
    them

16
CRPD Participatory rights
  • Preconditions for participation rights to
    education and social services
  • Enabling participation rights to involvement in
    personal and public decision-making
  • Furthering participation rights to accessible
    information and freedom of expression

17
Principles derived from human rights norms
  • State responsibility for advocacy recognition
    as a legal right
  • Independence of advocates minimising conflicts
    of interest and promoting personal autonomy
  • Identifying and prioritising those in most need
    of advocacy
  • Potential for advocacy as a tool for systemic
    reform
  • Involvement of people with disabilities in
    planning and developing advocacy

18
The right to advocacy in Ireland
  • Adult qualifying persons
  • By reason of disability is unable to obtain or
    difficulty in obtaining a social service without
    personal advocate
  • Risk of harm to the persons health, welfare or
    safety if the social service is not provided
  • Child qualifying persons
  • Risk of harm
  • Parent/guardian is qualifying person, OR
  • Child has disability and it would be unreasonable
    to expect parent/guardian to advocate for child
    without support from personal advocate

19
Priorities in assigning personal advocate
  • Needs of qualifying persons to have personal
    advocates
  • Degrees of risk of harm to the health, welfare or
    safety of qualifying persons if they are not
    provided with the social service
  • Potential benefits to qualifying persons from
    personal advocacy
  • Availability of alternative advocacy services to
    qualifying persons

20
Functions of personal advocate
  • If appropriate
  • Apply for assessment under part 2 of Disability
    Act
  • Assist, support and represent person in applying
    for social service
  • Pursue right of review or appeal to a body other
    than a court if the application for social
    service is refused
  • Promote best interests by providing support and
    training to person, family, carers and others
    while above activities are in progress

21
Issues for best practice and human rights
  • State responsibility risk of harm, availability
    of alternative advocacy, no proactive approach
  • Independence and conflicts of interest use of
    best interests and if appropriate in advocacy
    functions
  • Identifying those in need specified persons,
    more proactive approach necessary
  • Potential for systemic reform undeveloped
  • Involvement of people with disabilities limited
    consultation on legislation

22
Community Voluntary advocacy principles
  • Empowerment of the person with a disability where
    possible
  • Respect for the person and his/her wishes
  • Taking account of the persons best interests
  • Acting independently
  • Maintaining confidentiality
  • Acting with diligence and competence

23
Advocacy criteria and priorities
  • Qualifying criteria disability as defined in
    2005 Act
  • Prioritising cases
  • Urgency of clients needs
  • Likely benefits to the client of having advocate
  • Risk of harm to the client, if he/she is not
    given an advocate
  • Alternative advocacy services
  • Need for representation at a review or assessment
    of need
  • Wider relevance of an individual case

24
Issues for best practice and human rights
  • State responsibility shifting the burden to the
    voluntary sector particularly for
    non-instructed
  • Independence of advocates funding groups of
    service providers, using best interests principle
  • Identifying those in need no support from
    external investigation mechanism for those in
    residential care
  • Potential for systemic reform need for issues
    raised at grassroots level to make impact on
    policy
  • Involvement of people with disabilities greater
    than for PAS, continued involvement needed

25
Recommendations for Reform
  • Strengthen existing legal entitlement, remove
    risk of harm and best interests test
  • Draft Mental Capacity Bill to recognise advocacy
    as less restrictive alternative to guardianship
  • Ensure independence from service providers in
    funding structures for community/voluntary
  • Establish effective independent investigation
    mechanism for people in residential care
  • Develop Code of Ethics for advocacy practice
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