Advocacy Professional Practice 4

1. Advocacy Professional Practice 4

2. Advocacy ... promotes equality, social justice and social inclusion. It can empower people to speak up for themselves. Advocacy can help people become more aware of their own rights, to exercise those rights and be involved in and influence decisions that are being made about their future. (Lee, 2007: 7)

3. Advocacy is “Advocacy is actively supporting a cause or issue; speaking up in favour of; recommending; supporting or defending; arguing on behalf of oneself or on behalf of another.”(Birmingham, 2001, Forum for People with Disabilities. 2.2 pg. 9)

4. Advocacy is • “Advocacy is about making sure that everyone has an equal voice. Advocacy is also about speaking up and getting someone to listen to you.” National Disability Authority (2001) pg. 6 & 7

5. Advocacy is concerned with getting one's needs, wants opinions and hopes taken seriously and acted upon. The Commission believes that advocacy is essential because it allows people to participate more fully in society by expressing their own viewpoints, by participating in management and decision making and by availing of the rights to which they are entitled (Report of the Commission on the Status of People with Disabilities, 1996, p. 106).

6. Advocacy • The term Advocacy comes from the Latin word ‘ad voce’ meaning ‘towards a voice.’ • Advocacy means empowering a person to have a voice. • Advocacy can take many forms; this is why advocacy can sometimes be a confusing term

7. Advocacy • Advocacy is about ensuring that service users are able to have a voice in decisions that concern their lives • About making their views known and heard. • Echoes social work and social care values such as; equality, social justice and social inclusion. • Advocacy involves giving support to a particular cause.

8. Advocacy is concerned with the representation and empowerment of vulnerable people. • Advocacy is a pathway not a destination - its aim is to take people where they want to go • Not everyone likes the term ‘advocacy‘ and not everyone who acts as an advocate uses the term – many people prefer to use ‘speaking up‘ or ’lending a voice’.

9. Advocacy activities range from very basic interventions to the more complex: • • basic – saying a word in support of someone or encouraging them to assert their rights • • complex – such as expert representation at a tribunal or long-term involvement in the life of a vulnerable person.

10. What Advocacy Involves… Advocacy can be taking action to • help people say what they want, • secure their rights, • represent their interests and • obtain services they need. At a wider level, a political process • to effectively influence public policy; • to get it implemented; • to advance social justice and human rights

11. What an advocate does? • Make sure people are not just heard but answered • Empowers the person and promotes positive images • Works to make things happen and change • Supports the person to make choices and take more control • Works for equal rights and inclusion

12. What an advocate does not do? • Give advice • Take control away from the person • Referee an argument or dispute • Take on the role of a social worker • Make up for gaps in the service that should be provided • Who do you think might need Advocates?

13. History of Advocacy In 1946, Judy Fryd, a mother of a child with a learning disability (Mental Handicap as was in those days), formed 'The National Association of Parents of Backward Children' (which later became Mencap). She wrote to ’Nursery World’, magazine inviting other parents to contact her. Many parents wrote to Judy expressing their anger and sorrow at the lack of services.

14. History of Advocacy Citizen Advocacy movement in the United States and Canada in the mid 1960’s Stemmed from Bengt Nirge, Wolf Wolfensberger’s and John O’Brien’s work on normalisation. Wolfensberger’s Social Role Valorisation theory (SRV): some individuals and groups are perceived by society to hold low social value and consequently are vulnerable to social devaluation To prevent people from attaining negative social roles in the first place, work to reverse, or at least reduce the impact of existing negative roles and to promote positive, valued roles.

15. O’Brien’s Basic Model • O’Brien & O’Brien argued we need a way of thinking about how communities can include and welcome everyone. • They identified 5 Valued Experiences people seek out in life: Sharing ordinary places, Making Choices, Developing abilities, Being treated with respect and having a valued social role, Growing in relationships • Disability Services must work to ensure that service users have access to these experiences • Citizenship • Social inclusion

16. History of Advocacy Amnesty International was founded in the early sixties on the belief in the power of ordinary people to make extraordinary change. 1961, Peter Benenson wrote a newspaper appeal, 'The Forgotten Prisoners', Within six months, what started as a brief publicity effort, was being developed into a permanent, international movement, speaking up for the human rights of prisoners of conscience.

17. History of Advocacy Since the late 1970s, mental health services continue to be transformed by the growing influence of consumer and family organizations. Through strong advocacy, consumer and family organizations have gained a voice in legislation and policy for mental health service delivery. Some important, overlapping goals: overcoming stigma and preventing discrimination, promoting self-help groups, and promoting recovery from mental illness (Frese, 1998).

18. The Civil Rights Movement produced many inspirational people who can be said to influence the reason for, and development of, advocacy. The following is a quote from Eleanor Roosevelt from as long ago as December 1948 “Where, after all, do universal human rights begin? In small places, close to home – so close and so small that they cannot be seen on any maps of the world. Yet they are the world of the individual person: the neighbourhood he lives in; the school or college he attends; the factory, farm or office where he works. Such are the places where every man, woman, and child seeks equal justice, equal opportunity, equal dignity without discrimination. Unless these rights have meaning there, they have little meaning anywhere. Without concerted citizen action to uphold them close to home, we shall look in vain for progress in the larger world.”

19. History Independent Advocacy has flourished in Britain and Ireland over the last twenty five years Has been reactive rather than organised; developed in response to people’s needs It has evolved into a movement that is now recognised as a valuable commodity by individuals who use it, Government and Services alike.

20. Backdrop to advocacy • The Constitution, legislation and complaints mechanisms Advocacy depends on a backdrop of equal rights for all citizens and enabling legislation. • The Bill of Rights in the Irish Constitution gives people civil and political rights but successful advocacy may also depend on recognition in legislation of these rights and the advocate’s role. • The Irish Constitution guarantees equality and a number of rights to all citizens. Sometimes people can use these constitutional provisions to vindicate their rights, as in the case of Paul O’Donoghue (1996) who won the right to a primary education despite significant disability.

21. Another example is an asylum seeker who can obtain judicial reviews of legislative decisions such as deportation orders • Irish Law now upholds employment and social welfare rights. Equality measures, such as Employment Equality Acts 1998 to 2007 and the Equal Status Act 2000 to 2004, outlaw discrimination in: • employment • vocational training • advertising • collective agreements • the provision of goods and services • other opportunities to which the public generally have access.

22. Disability Act 2005 • The Comhairle Act, 2000 defines advocacy services as: ‘those in which the interest of a person seeking a social service are represented in order to assist such a person in securing entitlements to such a service but does not include legal representation’. • Therefore, advocacy in the sense of claiming entitlements or making a complaint is part of Citizens Information Board’s remit and an advocacy service is available through Citizens Information Services.

23. The Disability Act 2005 and the Citizens Information Act 2007 propose a scheme of personal advocacy for people with disabilities to be run by Citizens Information Board.

24. Under the new Citizens Information Act the function of an advocate will be • : • helping and/or representing the person during an assessment of need or when a service statement is being drawn up • • helping or representing a person to obtain social services • • making or helping the person to make a complaint, appeal except to a court. • Personal advocates will be entitled to get certain information, make inquiries, enter day care, residential care or training facilities, attend and represent a person at any meeting, consultation or discussion. • Voluntary and statutory bodies will be obliged to co-operate.

25. Principles underpinning Advocacy • Social Justice • Empowerment • Autonomy • Social Inclusion • Citizenship

26. Social Justice • Promoting human rights and challenging oppression and discrimination • Promoting the development of an inclusive society in which everyone should have the same basic rights, protection, opportunities, obligations, and social benefits • Based on the belief that every person can and should be supported to play an active role society.

27. [Advocacy is] a crucial element in achieving social justice. It is a way to ensure that everyone matters and everyone is heard – including people who are at risk of exclusion and people who have particular difficulties in making their views known. (SIAA, 2010: 4)

28. Empowerment • Power is distributed in an unequal manner in society • Who has the power? • It is about “working with people to enable them to become a critical, creative, liberated and active participant in taking more control of the direction of their lives” • Challenges power inequalities and seeks a sharing of power with structures that will allow participation and collective action

29. Equality • All people are of equal worth and importance and equally worthy of respect and acknowledgement • “Equality is not always about treating everyone the same – it is about treating people in such a way that the outcomefor each person can be the same” (NYCI, 2015). • This may mean putting things in place to support people to achieve similar outcomes; educational programmes, family support etc. • Equality legislation

31. Autonomy • Autonomy “enables people to be more in control of their own lives, by having, support to make their views known and greater involvement in decisions” 18 Lochaber, cited in Atkinson (1999) pg. 16 • Autonomy means people directing their own lives • Not always the case for many people with learning disabilities • Autonomy is one of the main principles reiterated in the UN Convention on the Rights of Persons with Disabilities.

32. Social Inclusion • Full participation for marginalised and vulnerable minorities • Seeking to eliminate social exclusion and oppression • All citizens have equal value and worth • Social exclusion: excluded from opportunities & meaningful participation within society • Can you think of any examples of people being excluded from participating in Irish society?

33. Citizenship: • Advocacy is about protecting the rights and privileges of all citizens in society. • Advocacy often used to reduce the barriers experienced by people with disabilities • People with learning disabilities experience exclusion in society in the following ways: • Segregation i.e. people with learning disabilities have been living in an institution for many years. • Choices denied • Very little opportunities (employment, leisure etc.) made available • Negative attitudes

34. Bateman’s (2000) six principles of advocacy • Always act in accordance with the client’s wishes and instructions • Always act in the client’s best interests. • Keep the client properly informed. • Carry out instructions with diligence and competence • Act impartially and offer frank, independent advice. • Maintain rules of confidentiality

35. Moving from care to support; medical to social model Being Cared for • Routines • Safety • Basic needs • Labels stick • Limiting beliefs • Low expectations • Lack of participation • Lack of options • Powerless in relationships Being supported • New opportunities • Person listened to • Notice detail • Equal relationships • Actively supported • Learns new skills • Contribution valued • Range of options • Rights respected

36. Types of advocacy Many different types of advocacy • Self-advocacy; individual speaking for themselves, standing up for their rights, making choices, being independent, taking responsibility for themselves • Group advocacy; speaking up on issues collectively eg. Quantum Leap Self Advocacy Group in Limerick • Supported by Enable Ireland • Meet on are fortnightly basis

37. Activities of Quantum Leap Self Advocacy Group • Complained to (and received acknowledgement from) taxi regulator on unsafe practice of drivers not knowing how to or using tie down equipment; • Wrote to (and had acknowledgement from) local hospital on disabled parking problems; • Presently working with Limerick rail station on problems with parking, set-downs and using the trains; • Group working as mentors to similar self-advocacy group in Limerick (but with people who have intellectual disabilities); • Presently trying to work with local cinema on problems of no seating beside person with disability for PA

38. 3. Citizen advocacy • An individual (often volunteer) working in partnership with a person with a learning disability for as long as the individual needs the support. • This service should be completely independent from service providers • Volunteers are selected carefully through an extensive recruitment and training process. • Eg. Age Action Ireland; Advocates to support older people have their say & exercise their rights

39. 4. Political advocacy eg, National Disability Authority (NDA) 5. Peer advocacy or Family advocacy 6. Specialist advocacy (legal etc.) 7. Statutory Advocacy; where someone is appointed with legal responsibility to represent another such as a welfare guardian.

40. Examples of advocates Services • Independent advocate-NAS, CIC • Guardian Ad Litem service • Children's Ombudsman • Service User forums/committees • Parents groups • Volunteer Everyday life • Solicitor • Insurance broker • Family member • Trade union rep • Class rep

41. Case study 1 • Mary is 56 years of age and has an ID. She does not speak but uses gestures, signs and a communication board. She is in poor health and has had several chest infections in the last 3 months. Her SLT says her swallow has deteriorated and she is at very high risk of aspirating and ending up back in hospital with a chest infection. The SLT has recommended thickener in all her drinks. Mary is very clear she does not want thickener in her drinks. She has a big birthday coming up and does not want to be unwell for it

42. Case study 2 • Carol is trying to access mental health services and her Consultant Psychiatrist had promised to write her two letters of referral when he had seen her three months previously. she has her next appointment in the coming two weeks and wants to communicate with her consultant before the meeting the fact that the above agreed course of action has not been done. Carol would like somebody present at the meeting so that they can witness what has occurred.

43. Case study 3 • Liam is a 15 year old boy who has been in care since he turned 12. Luke has had 8 placements and 5 social workers. Luke’s natural family are somewhat supportive of him however they are not consistently in contact with him. Luke has recently gotten involved in criminal activities and is currently placed in an unsuitable residential Centre with older teenagers who have behavior that challenges

44. Questions • What are the issues? • What is the role of the advocate?

45. Advocacy and people with disabilities • Advocacy is a relatively new concept in the disability sector in Ireland. • The provision of advocacy services has gained momentum within the last ten years in Ireland. • Linked to moving towards a Social Model of care and supporting people with disabilities to lead meaningful and full lives • According to the National Disability Authority (NDA): the main role of the advocate is to enable the person to get their views across.

46. Social Model of Care • 1980s and 1990s saw a shift in thinking; recognition that disability is ‘created’ by society • Society actively and passively excludes them from full participation. The person with the impairment is not the problem but rather society’s response to it. • Human rights debate and concerns about social inclusion • As part of this movement; Person Centred Approach to planning services

47. Advocacy and people with disabilities • People with learning disabilities do not always understand their rights and entitlements • The support of an advocate is essential to enable these people to take control of their own lives and be more active in the disability movement. • Citizen advocates provide support on a voluntary basis to enable people with learning disabilities to have their voices heard. • People with learning disabilities are more vulnerable in comparison to people with physical or sensory disabilities

48. Self-advocacy and citizens advocacy tend to be the most common types of advocacy used with people with learning disabilities. • Citizen advocacy originated from social role valorisation theory (SRV): ensuring that people have access to meaningful relationships and positive life experiences • Self-advocacy originated from the disability rights movement and the social model of disability. • Taking the power back • People with disabilities identifying their own needs

49. UN Convention on the Rights of People with Disabilities • About strengthening the rights for people with disabilities in Ireland and abroad. • The convention; 50 articles in total: • Article 3(a): “Respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence. • Article 3(c): Full and effective participation and inclusion in society. • Article 13: Access to justice. • Article 19: Living independently and being included in the community. • Article 21: Freedom of expression and opinion and access to information.

50. UN Convention on the Rights of Person with Disabilities • Article 19 of the UN Convention on the Rights of Person with Disabilities • People with learning disabilities have a legal right to live independently in the community. • The (ECCL) European Coalition Community Living (2008) emphasise that advocacy is a key tool in the independent living movement and enables people with disabilities to live independently