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. Stone’s 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 • Advocacy’s 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 person’s 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 person’s 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 client’s 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