Ireland and elsewhere

Eilionóir FlynnCentre for Disability Law and Policy

Overview

Nature and purpose of advocacy Human rights norms which underpin a right

to advocacyLegislative and policy framework for

advocacy in IrelandAssessment of compliance with international

human rights normsRecommendations for reform

Advocacy Definitions Speaking, acting, writing, for individual or groupOn behalf of a sincerely perceived interestWith minimum conflicts of interestTo promote, protect and defend their welfare, and

secure justiceAdvocacy 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)

Nature of advocacyLinked 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)

Purpose of advocacy

Accessing essential social supports, information, appealing refusal of service provision

Less restrictive alternative to guardianship/substitute decision-making

Forms of Advocacy

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

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

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

Stone’s Advocacy ModelsStand before

Stand behind

Stand beside

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

Why is a ‘right’ to advocacy necessary?Potential vulnerability – existing barriers to

participation

Ineffective current legal solutions – based on paternalism

Advocacy’s contribution – progressing the paradigm shift from welfare to human rights

Sources for a Right to AdvocacyGeneric human

rights norms

Access to JusticeSocio-economic

human rightsHuman dignity

principle

Specific commitments in CRPD

Autonomy rights (self determination, capacity)

Participatory rights (public sphere, socio-economic)

Access to JusticeArt 13, CRPD, Art 2(3) ICCPR, Art 8, UDHR

Stems from concept of equal citizenshipConstrued 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”

Socio-economic rightsGC 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)

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

CRPD – General aimsEmbed 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

CRPD – Autonomy RightsArt 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

CRPD – Participatory rightsPreconditions 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

Principles derived from human rights normsState responsibility for advocacy – recognition as

a legal rightIndependence of advocates – minimising conflicts

of interest and promoting personal autonomyIdentifying and prioritising those in most need of

advocacyPotential for advocacy as a tool for systemic

reformInvolvement of people with disabilities in

planning and developing advocacy

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 person’s health, welfare or safety if the social service is not provided

Child qualifying persons

Risk of harmParent/guardian is

qualifying person, ORChild has disability and

it would be unreasonable to expect parent/guardian to advocate for child without support from personal advocate

Priorities in assigning personal advocateNeeds of qualifying persons to have personal

advocatesDegrees 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

Functions of personal advocateIf appropriate:Apply for assessment under part 2 of Disability ActAssist, support and represent person in applying

for social servicePursue 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

Issues for best practice and human rightsState responsibility: risk of harm, availability

of alternative advocacy, no proactive approachIndependence 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: undevelopedInvolvement of people with disabilities: limited

consultation on legislation

Community & Voluntary advocacy principlesEmpowerment of the person with a disability

where possible Respect for the person and his/her wishesTaking account of the person’s best interestsActing independentlyMaintaining confidentialityActing with diligence and competence

Advocacy criteria and prioritiesQualifying criteria: disability as defined in

2005 ActPrioritising cases:Urgency of client’s needsLikely benefits to the client of having advocateRisk of harm to the client, if he/she is not given

an advocateAlternative advocacy servicesNeed for representation at a review or

assessment of needWider relevance of an individual case

Issues for best practice and human rightsState responsibility: shifting the burden to the

voluntary sector – particularly for non-instructedIndependence of advocates: funding groups of

service providers, using best interests principleIdentifying 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

Recommendations for ReformStrengthen existing legal entitlement, remove

risk of harm and best interests testDraft 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