Advocacy for people with disabilities


Published on

Published in: Health & Medicine
  • Be the first to comment

No Downloads
Total views
On SlideShare
From Embeds
Number of Embeds
Embeds 0
No embeds

No notes for slide
  • Moira Jenkins Department of Social and General Studies Cork Institute of Technology
  • Advocacy for people with disabilities

    1. 1. Recent legal, policy and service developments in social careadvocacy for people with disabilities – what is available and what remains to be done to enable ratification of the Convention on the Rights of Persons with Disabilities Social Care Ireland ‘Taking Stock’ Conference 2012 Moira Jenkins 1
    2. 2. The argument for advocacy as a right – not a recent development• “An unenforceable right or claim is a thing of little value to anyone” Tom Bingham. The Rule of Law. (2010) Penguin. Page 85.• “Advocacy is concerned with getting one’s needs, wants, opinions, and hopes taken seriously and acted upon. 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.” A Strategy for Equality – Report of the Commission on the Status of People with Disabilities. (1996).• “Advocacy enables the individual to access civil and human rights, therefore advocacy should be a right in itself – a necessary tool in participating in society as a full and equal citizen….Rights to services and a right to advocacy are not exclusive – one cannot exist without the other” Exploring Advocacy – Full Report. (May 2003). Centre for Disability Studies. UCD. Page 37.• Constitutional guarantees relating to self-determination and autonomy (see Denham J. In re a Ward of Court. (No.2) (1996) ); equality before the law (art 40.1); right to a fair trial (art 38.1); exercise of rights arising from the parent/child relationship and case law re article 6 European Convention on Human Rights (a fair trial) have all entailed an ancillary or attendant right to advocacy. (See Preliminary Submissions by the Human Rights Commission as Amicus Curiae in Legal Aid Board v. District Judge Patrick Brady and others March 2007. Case settled. Guidelines for granting of legal aid introduced.)• “An advocate helps people express their views and make informed decisions. An advocate helps people to find out information, explore options and decide for themselves what they want. Advocates can be a voice for the person and encourage them to speak out for themselves.” Scottish Independent Advocacy Alliance. “Non-instructed advocacy guidelines. A companion to the Code of Practice for Independent Advocacy” (2009) 2
    3. 3. Legal capacity – what is it? Reform of antiquated capacity laws seen as crucial to ratification• ‘Legal capacity’ is the legal ability to do something within the framework of rules that make up a legal system. Adults enjoy a presumption of legal capacity in common law – to be a subject of law with rights and obligations. Hence the adult with legal capacity can borrow money, marry, refuse consent to medical treatment even if it results in death, choose where s/he will live and with whom and how they will spend their day. S/he can make bad decisions, repeat those bad decisions and change her mind. (Koch 1997. 33 O.R. 485 “it must be remembered the appellant has the right to spend her money foolishly if she desires. The right to be foolish is an incident of living in a free and democratic society”. Dignity of risk).• It is for the person arguing someone lacks capacity to prove it, the onus is on them to rebut the presumption of capacity. Legislation restricts this legal capacity for groups of people on status and outcome grounds usually on foot of a medical decision that someone lacks capacity.• Approaches to capacity. Status approaches to capacity - for example the ward of Court system or guardianship systems, children– labels one as lacking capacity and removes some or all decision making/legal capacity. People with intellectual disabilities and certain severe mental disorders can have this blanket ruling with plenary guardianship/substitute decision making as a consequence Outcome approaches to capacity involve the ‘reasonableness’ of the decision – if you make a ‘wise’ decision then you have capacity but if you make a foolish decision then you must lack capacity – often results in substitute decision making. A functional approach, essentially the common law approach re adults, is whether someone understands the nature and likely consequences of this decision. Autonomous decision making. Status and outcome approaches to capacity result in substitute decision making usually by professionals in the ‘best interests’ of the individual. A ‘functional approach’ depends on information and advice to be meaningful.• All three approaches have been described as objectionable: “The status approach rests on stereotypes and ignores the person’s actual abilities. The outcome approach is contradictory and does not afford persons with disabilities the dignity of making mistakes and taking risks like the rest of us. The functional approach has, so far, given too little attention to the importance of support.” Commissioner for Human Rights. Issue Paper (2012) 2. Who gets to decide? Right to legal capacity for persons with intellectual and psychosocial disabilities. 3
    4. 4. The CRPD and ensuring effective enjoyment of rights• The Convention on the Rights of Persons with Disabilities entered into force in May 2008. It has been signed but not ratified (agree to do its best to enforce it) by Ireland. It has been ratified by the EU, the first UN human rights treaty the EU has ratified. 110 ratifications of the Convention, 153 signatories of the Convention, 63 signatories to the optional protocol and 90 signatories. (Enable newsletter. Feb 2012.• The CRPD does not create new rights but aims to make existing human rights equally effective for persons with disabilities. It does not define disability – the preamble says disability is an ‘evolving concept’ resulting from the interaction between people with impairments and attitudinal/environmental barriers hindering equal participation in society and Article 1 says PWD include those with long term physical, mental, intellectual or sensory impairments hindered in their participation in society by various barriers.• Article 3 General principles include respect for inherent dignity and autonomy including the freedom to make your own choices and independence of persons; full and effective participation and inclusion in society; equality of opportunity. Article 5 enshrines the obligation to provide “reasonable accommodation” to ensure PWDs can enjoy and exercise all human rights on an equal basis with others.• Article 13 Access to justice requires States to ensure effective access to justice for PWDs on an equal basis with others – to facilitate effective participation in all legal proceedings. Article 19 Living independently and being included in the community - “choices equal to others” – requires effective measures to choose where you live and access to in-home, residential and community supports necessary to realise these choices. Article 21 requires effective measures to ensure that PWDs can seek, receive and impart information and ideas on an equal basis with others. 4
    5. 5. Article 12 – Equal recognition before the law “the beating heart of the Convention”• Right to support for exercising legal capacity Art 12.1 States Parties affirm that persons with disabilities have the right to recognition everywhere as persons before the law; 12.2 States Parties shall recognise that persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life; Art 12.3 States parties shall take appropriate measures to provide access by persons with disabilities to the support they may require in exercising their legal capacity.• Taking stock = All have an equal right to legal capacity and an attendant right to supports to exercise that capacity. Article 12 makes no distinction between those with intellectual disabilities and others. “Whatever else Ireland does it will, at a minimum, have to make explicit provision for a right to supported decision-making in any new legislation” Prof. G. Quinn. Need to ratify convention on rights of people with disabilities Irish Times. 04.10.2010.• Safeguards Art 12.4 requires States to ensure any safeguards to prevent abuse respect the rights, will and preferences of the person, are free of conflict of interest and undue influence, are proportional and tailored to the person’s circumstances , apply for the shortest time possible and are subject to regular review by a competent, independent and impartial authority or judicial body. The safeguards shall be proportional to the degree to which such measures affect the person’s rights and interests.• Taking stock = Maintaining full legal capacity of individuals is the central aim; supports/degree of assistance depends on the needs and abilities of the person and vary depending on the situation; such support in exercising capacity must be based on the will and preferences of the person making the decision; in practice this must require a) impartial assessment of need for advocacy/supported decision-making b) rigorous delineation of supporters’ role and powers c) independent review and appeal of decisions by PWD or their families.• See Equal recognition before the law and equal capacity to act: understanding and implementing Article 12 of the UN Convention on the Rights of Persons with Disabilities European Disability Forum Position Paper – October 2009. Has eight steps for achieving equal recognition before the law. 5
    6. 6. Legal capacity reform– the Scheme of the Mental Capacity Bill and Justice Committee hearings on Draft Heads of Proposed Mental Capacity legislation• In September 2008 the Law Reform Commission published a Scheme for new legislation on capacity based on extensive work on vulnerable adults and the law, including a consultation paper on the law and the elderly (2003). (Consultation Paper on Vulnerable Adults and the Law : Capacity 2005; Law Reform Commission Report on Vulnerable Adults and the Law 2006.• Under 57 heads the Scheme proposes a legislative basis for the common law presumption of capacity with a functional test, appointment of personal guardians under an Office of Public Guardian and measures on enduring powers of attorney. It includes a ‘best interests test’ (Head 3) and would, in its present form, preserve current laws on capacity to consent on sexual relationships, marriage and civil partnerships and adoption.• In February 2012 the Committee began to hear oral representations from some of the 70 written submissions and 30 groups who commented on the Scheme. The proceedings can be viewed at Inclusion Ireland, Mental Health Reform, Amnesty, Centre for Disability Law and Policy amongst others have criticised the focus on substitute decision making in the Scheme; the inclusion of a ‘best interests’ test - now viewed as more suitable to children not adults; a lack of emphasis on supports for decision making and on substitute decision making as a measure of last resort, for the shortest time possible and to include the “will and preferences” of the person. Inclusion Ireland and CDLP (submissions available on their respective websites) have argued the use of the term ‘guardian’ and other aspects of the Scheme are out of step with the recent dynamic created by the CRPD. Language is important.• On 29 February 2012 the Chairman noted “The Scheme of the Bill was drawn up in 2008 and it appears that there may be a need to tear it up and start again in order that we might get the philosophy right. We have the opportunity now to do this.” The Bill has not been published. The Scheme is a proposal and can still be changed. 6
    7. 7. Implementing Article 12 – beyond capacity reform to supporting capacity.• Equal recognition before the law is not only about legal capacity status but an evolving capacity to exercise rights and the capacity to act. To have your decisions acted upon.• The Council of Europe, Commissioner for Human Rights has issued Recommendations to member states to bring their legal systems on legal capacity in line with the CRPD (20.02.12) including developing supported decision making alternatives for those who want assistance in making decisions or communicating them to others (recomm. 7) and to ‘establish robust safeguards to ensure that any support provided respects the person receiving it and his or her preferences, is free of conflict of interests and is subject to regular judicial review (recomm. 8) and to oblige service providers including the government and courts to provide reasonable accommodation for PWD wishing to access their services including provision of information in plain language and the acceptance of a support person communicating the will of the individual concerned. (• Disability Legislation Consultation Group published Equal Citizens: proposals for Core Elements of Disability Legislation in 2003. Core, integral role of independent advocacy in realising rights. “Towards 2016” and the National Disability Strategy 2004 acknowledged need for provision of independent advocacy. National Disability Strategy included 3 Acts of the Oireachtas = Disability Act 2005, Education for Persons with Special Educational Needs Act 2004 & Citizens Information Act 2007 including a statutory right to a personal advocate• Taking Stock: None of this legislation has been fully commenced and brought into force. Neither have these laws been repealed. Even if fully commenced there are Convention issues not addressed in our current National Disability Strategy – access to justice, decision making capacity, multiple discrimination (on grounds of age, gender, race etc..), participation in political and social life, privacy, respect for home and family. There is a worrying attitude to the rule of law here – Mary Hanafin, Dail Debates April 30 2009 re non-appointment of the statutory post of Director of Personal Advocacy Services “”..having regard to the current budgetary circumstances, it will not be possible to proceed with this in 2009…the potential for a personal advocacy service is huge…it is only on hold, however, until we get out of the current economic crisis. It was purely a budgetary decision not to go ahead at the moment, rather than a policy one.” 7
    8. 8. Statutory right to a personal advocate replaced with National Advocacy Service• Section 5 of the Citizens Information Act 2007 provided a statutory right to an advocate if you ‘qualified’. For over 18’s the criteria is that the Director of the Personal Advocacy Service decides that because of a disability you cannot obtain a social service without the help of an advocate and there are grounds that without that social service there is a risk of harm and you are ranked in the “order of priority” for an advocate(section 7A(5)). So applying for advocacy services under the Act would be far from easy.• Taking Stock: section 5 CIA 2007 Not commenced therefore impossible to qualify for PA rather than just really,really hard. Even if commenced limited: only deals with one form of advocacy; threshold of ‘risk of harm to health, welfare or safety’ to access an advocate is too high ; nothing on qualifications/internal and external supervision of advocates/review or appeal re actions of advocates. The lessons re GALs not incorporated.• Strengths of section 5/PAS: s.7D(1) Right of advocate to assist, support and represent the person,;(2) to enter any place and make inquiries; (3) to obtain any necessary information, attend and represent person at any meeting where interests of the person being considered (4) Statutory/voluntary bodies “shall co-operate” with the personal advocate (5) “A person who by act or omission obstructs or hinders a personal advocate shall be guilty of an offence” and shall be liable on conviction to a fine not exceeding e2000 or maximum of 3 months jail or both.• On 30 March 2011 the National Advocacy Service for People with Disabilities was launched. (See “Speaking up for Advocacy” Issue 15. October 2011. 5 regions, five managers, five administrators, 35 advocates, seven senior advocates, 414 clients on that date. Phone numbers and names provided. There is a National Advisory Group interfacing the disability sector with developing policy including the Access and Eligibility policy. The Service is to provide independent, representative advocacy for people with disabilities who seek to enforce their legal entitlements to services. NAS advocates do not have PAS powers. A review of NAS has been promised after 12 -18 months to consider if there is a need to introduce such powers or if service providers are co-operating with the service sufficiently. (See Flynn, E blog entry 15 February 2011 Five Advocacy Support Workers have also been appointed to coach and mentor CIS Information providers in the processes and skills of advocacy to develop complementarity between the mainstream and specialist advocacy services. A Non-Instructed Advocacy policy is being drafted by the NAS to ensure appropriate advocacy is provided where advocates are unable to obtain instructions from the person they represent• Taking stock 1: An independent service - well funded and staffed by well paid and qualified people - has been introduced instead of a statutory right to a personal advocate with enforceable powers to access the person, information, representation. The NAS appears to replace rather than complement the statutory system envisaged. The future of the PAS provided under the 2007 Act is unclear. Eligibility for NAS is unclear and apparently resource dependent.• Taking stock 2: 400,000 people with a disability in Ireland (CSO 2008); 32,000 live in a residential home or hospital; 150 residential centres for PWDs (HSE 2007); 607 res. Units/homes for over 65’s; 4, 000 people with intellectual disabilities in closed residential centres. 22% of all PWD’s are over 75. 14% of PWD’s are between 65 – 74. 35 NAS advocates. 8
    9. 9. Pilot Programme 2004 -2010. Evaluation and lessons• Goodbody Report Developing an Advocacy Service for people with Disabilities (2004) commissioned by the CIB recommended a 3 strand approach: PAS – statutory, paid, professional representative advocacy to deal with complex advocacy issues; a Support programme for the Community and Voluntary sector providing individual advocacy services and a Community Visitors programme for people with a cognitive disability in residential institutions provided by volunteers with oversight/supervision. Strand 2 was piloted in 46 projects from 2004-2010. Evaluated in the Roundtable Evaluation of the programme of Advocacy Services for people with Disabilities in the Community and Voluntary sector. Final report. June 2010. Executive summary = pages 11 – 29. “Advocacy for PWDs is delivering significant value and is changing people’s lives in a real way” but the Evaluation also clearly stated that without PAS powers “advocates may not be able to gain access to clients in residential centres, may not have sight of documents and files and may not be able to provide full representation and/or support to vulnerable people who are involved in official processes or who wish to take a serious complaint against a service provider.”• Taking Stock: Extensive piloting found advocacy can be transformative for some PWDs. Thorough evaluation also found that advocates and carers need clarity of role and enforceable powers re - accessing the individual, information and rights to represent the individual (when requested to do so by the individual). This aspect of the Evaluation has not been acted on. 9
    10. 10. Substitute decision making and accountable supported decision making• Substitute decision making should always be a last resort. But often is the first., usually because “alternative supported decision making provisions and community services are not yet in place”. (Michael Bach. Supported decision making under article 12 of the UN CRPD – Questions and Challenges 2007. Inclusion Ireland.)• Advocacy can assist the PWD in autonomous decision making – help with accessing information in plain language, assistive devices, completing requirements re powers of attorney/advance care directives etc..; advocacy can assist in supported decision making by making the will and preferences of the person known and acted upon in decisions about personal care, health care, finances and in relation to legal processes; advocacy can assist in substitute decision making in ensuring known will and preferences of the person are considered and in advising on supports to restore legal capacity .• Taking stock: a) there is a place for limited and restricted substitute decision making in an overall system to protect and promote legal capacity for some people, at some times not least because our legal system exposes professionals to liabilities if they cannot be satisfied a person made a decision autonomously or through an authorised, credible supported decision making process. But substitute decision making must be tied to specific decisions, with due process, a right to challenge and rigorous monitoring systems to ensure the establishments of supports so that supported decision making can replace substitute decision making as soon as possible and b) supported decision making must also be subject to effective safeguards to protect the person’s legal capacity and human rights. Advocacy is only one element of a range of ways to support decision making – a system of support networks, a circle of support required. 10
    11. 11. Regulating advocacy – outstanding issues for regulation• If advocacy is a vital element for some in exercising equality before the law then any credible provision must be accessible, sustainable, accountable. Who should have access to advocacy? How will it be rationed? What safeguards exist for the independence of the advocate? How are advocates to be selected, trained (including in alternative and augmentative communication), registered - does the person select her advocate? How will the advocate’s work be supervised? What regular review by a competent, independent and impartial authority of the advocate is available – for example if there is conflict between advocate and PWD. What about the liability and insurance of the advocate? What about the liability of professionals working with a PWD who has an advocate – what status do supported decisions have re contract law, tort, professional codes of conduct and professional ethics? All this calls for clarity of role, legal position and due process – legislation is needed.• One example of provision to meet the advocacy requirements of National Quality Standards for Residential Care Settings for Older People in Ireland : have applied since 2009 under the Health Act 2007, inspected by HIQA. Standards 1,2,3,5, 6, 17 all have an advocacy dimension/mandate. No regulatory base. Over the last 6 years, since Leas Cross, the National Advocacy Programme Alliance developed a volunteer advocacy service, co-ordinated by HSE staff. Now 250 volunteer advocates in 100 nursing homes assisting 2,000 older people in residential care. (see and Transferred to the Third Age. Trained volunteers +link person within home+a development officer. Have submitted to the External Reference Committee at HIQA that the Review of Health Regulations should include that each resident have access to an “independent advocate”. A recent HSE publication “Places to Flourish” a resource toolkit to assist more holistic care includes exercising choice and control and advice on meeting the HIQA Standards in this regard.• Taking stock: Unclear what needs to be provided with regard to providing access to independent advocacy to satisfy a HIQA inspection. With the individual’s consent does the advocate have a right to information including care plans and finances or to represent the person at meetings? Clarity of role of volunteer advocates? 11
    12. 12. Pressing need for a statutory base to standards for residential care for peoplewith disabilities, including a statutory right to an independent representative advocate• The National Quality Standards : Residential Services for People with Disabilities. No statutory basis to the Standards. No statutory independent inspection system. Target date of January 2013 provisionally set for the commencement of proposed registration and inspection scheme for the sector (Written answers. Dail Debates. Kathleen Lynch. 13 December 2011). Compliance with the Standards is provided for in Service Level Arrangements between the HSE and publicly funded services.• Numerous specific references to the individual resident’s right to access an advocate or advocacy services in the Standards. “Advocate” is defined in the glossary to the Standards as “as person independent of any aspect of the service or any of the statutory agencies involved in purchasing or providing the service who acts solely on behalf of and in the interests of the individual using the service. While many people may advocate on behalf of an individual the term is reserved in this document for those who act independently and disinterestedly for the individual.”• Taking stock: Is placing information about the NAS on a noticeboard providing access to an advocate or advocacy services? How can 35 NAS advocates meet this mandate? Alternatives being looked at include Representation Agreements as used in British Columbia. Any provision should be available on a transparent, fair and reviewable basis. Emily O’Reilly, Ombudsman, recently on eligibility to health services: “If, as it seems to be the case, the State’s approach to the provision of mandatory, statutory services is not greatly different from the approach to providing non-statutory or discretionary services, then there is no reason why we should take the law that seriously.” (Irish Times. 28.02.12). Would legislation make a difference ? Taking a positive view then delay in commencing the legislative components of the Disability Strategy may afford the opportunity for some joined up thinking on advocacy in a new capacity support Act. The final slide is a non-exhaustive picture of many current challenges and developments that could be included in such legislation. 12
    13. 13. Towards a Capacity Support Act –aspects to include?1. Disability Act, 2005. Assess advocacy needs. 7. ‘Whistleblowing’/public interest disclosure2. Citizens Info Act. PAS. Powers for NAS advocates 8. National Regulations for residential care of PWDs3. Advance care directives and scope of enduring power 9. Appointment, role and supervision of GALs of attorney. Liability of professionals relying on such authority. End of life care. Supervision of attorneys. 10. Consumer protection re contract law and financial abuse4. Review of the Mental Health Act and Criminal Law (Insanity) Act. 11. Registration of social care professionals (Health and Social Care Professionals Act5. ‘Fair Deal’ and consent to charging orders. National Standards for Residential Services for Older people to be regulated. 12. Selection, regulation and review of advocates. Vetting, qualifications.6. National Positive Ageing Strategy. Professional Home Care Regulations (Law reform Comm). Home Care Package Scheme. 13. Substitute decision making – as last Home supports and primary care teams. resort, for shortest time possible, with review and ‘will and preferences’ of individual. 13