Submission on the first Strategy Statement to the Irish Human Rights and Equality Commission. October 2015
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1 Submission on the first Strategy Statement to the Irish Human Rights and Equality Commission October 2015
2 1. Introduction The Alzheimer Society of Ireland welcomes the opportunity to input into the first Strategy Statement of the The Irish Human Rights and Equality Commission (the Commission). There are approximately 48,000 people living with dementia in Ireland. This number is expected to increase significantly in the coming years; rising to 68,216 people by 2021 and to 132,000 people by 2041 (Cahill, S. & Pierce, M, 2013). 2. About The Alzheimer Society of Ireland The Alzheimer Society of Ireland is the leading dementia specific service provider in Ireland. The Alzheimer Society of Ireland works across the country in the heart of local communities providing dementia specific services and supports and advocating for the rights and needs of all people living with dementia and their carers. Our vision is an Ireland where no one goes through dementia alone and where policies and services respond appropriately to the person with dementia and their carers, at the times they need support. A national non-profit organisation, The Alzheimer Society of Ireland is person centred, rights-based and grassroots led with the voice of the person with dementia and their carer at its core. The Alzheimer Society of Ireland also operates the Alzheimer National Helpline offering information and support to anyone affected by dementia at Dementia and human rights Dementia is a syndrome in which there is deterioration in memory, thinking, behaviour and the ability to perform everyday activities and dementia is one of the major causes of disability and dependency among older people worldwide (WHO, 2015). People with dementia and their carers have the same human rights as every other citizen. However, it is widely recognised that, in addition to the impact of the illness, they face cultural, social and economic barriers to fulfilling these rights. People with dementia and their carers need a charter that states their rights for a number of reasons, not least of which is the stigma and unmet needs of people with dementia and carers; the inadequate and inappropriate services available and the nature of the illness. It is important that the IHREC reognises people with dementia as rights holders as the IHREC progresses a human rights and equality agenda in Ireland.
3 PUBLIC CONSULTATION 2015 Written submissions on the Strategy Statement The Irish Human Rights and Equality Commission (the Commission) is preparing its first Strategy Statement to cover the period The Commission is committed to preparing this plan in a way that listens to the views of interested organisations and individuals. As well as holding a number of public meetings in different parts of the country, we are inviting written submissions. The call for written submissions is open from 1 September to 9 October A key purpose of the public consultation is to consult on activities in order to inform our first Strategy Statement. We have suggested a number of headings to assist you in making your submission. Please return written submissions: By to: lxbrady@ihrec.ie By post to: Laura Brady Irish Human Rights and Equality Commission Green Street Dublin 7 All submissions received will be acknowledged. Background The Commission was established on 1 November 2014, under the Irish Human Rights and Equality Commission Act 2014 (IHREC Act 2014) as an independent national human rights and equality institution. This independence is established by the appointment of all members of the Commission by our Head of State, President Michael D. Higgins. The Commission is accountable to the Oireachtas for its statutory functions. Our purpose is to protect and promote human rights and equality in Ireland. We aim to build a welcoming organisation that nurtures a culture of respect for human rights, equality and intercultural understanding. Further information about the Commission is available on our website
4 Developing our first Strategy Statement The Commission has proposed five goals for our first Strategy Statement. These were developed in the context of our mandate and functions as set out in the Irish Human Rights and Equality Act 2014 (2014 Act). Section 10(1) of the 2014 Act stipulates that the overall general functions of the Commission shall be: (a) To protect and promote human rights and equality, (b) To encourage the development of a culture of respect for human rights, equality, and intercultural understanding in the State, (c) To promote understanding and awareness of the importance of human rights and equality in the State, (d) To encourage good practice in intercultural relations, to promote tolerance and acceptance of diversity in the State and respect for the freedom and dignity of each person, and (e) To work towards the elimination of human rights abuses, discrimination and prohibited conduct. A full list of our list of our functions under the 2014 Act is available here GOALS Goal 1: Leadership IHREC acts as an independent, authoritative and influential institution in the promotion and protection of human rights and equality Goal 2: Pro-active approach to monitoring and compliance IHREC uses its full range of powers for monitoring of and compliance with equality and human rights obligations Goal 3: Interdependence of civil, political, economic, social and cultural rights IHREC will give equal weight to civil and political rights and economic, social and cultural rights Goal 4: Making Rights Real IHREC will give human rights and equality real meaning to people Goal 5: Intercultural Understanding Positive intercultural relations are enhanced CONSULTATION QUESTIONS In order to help us to refine our strategy we would like to consult with you on activities for its implementation. Please note that when preparing your submission you do not have to comment on every question. If there are particular issues which you would like to focus on please do so.
5 A: Creating a Culture of Human Rights and Equality 1. What do you think is needed to promote human rights and equality in Ireland? This submission is being made by the Alzheimer Society of Ireland. We welcome this opportunity to input into the first Strategy Statement of The Irish Human Rights and Equality Commission. This submission is being made with specific reference to people with dementia and the need for their voice to be incorporated into human rights discourse in Ireland. Dementia is a syndrome in which there is deterioration in memory, thinking, behaviour and the ability to perform everyday activities and dementia is one of the major causes of disability and dependency among older people worldwide (WHO, 2015). People with dementia and their carers (family members and friends) have the same human rights as every other citizen. However, it is widely recognised that, in addition to the impact of the illness, they face cultural, social and economic barriers to fulfilling these rights. In a report commissioned by the Alzheimer Society of Ireland in 2013, it was concluded that human rights can only be realised when the following issues are addressed: 1. Access to Appropriate and Timely Information 2. Having a Voice 3. Access to Redress 4. Allocation of Resources 5. Choice 2. What do you think are the key barriers / obstacles to achieving progress on human rights and equality?
6 For people with dementia, stigma and ageism pose significant barriers to progressing their human rights. In addition, a lack of awareness of their rights and a lack of resources can also be barriers to achieving rights for people with dementia and their carers. The disabling aspects of dementia means that people with dementia face significant barriers to exercising and claiing their rights. One of the critical gaps in Irish legislation in terms of rights which directly impact on older people is the absence to date of modern, human rights compliant capacity legislation. It is to be hoped that this is a gap which will shortly be filled by the enactment of the Assisted Decision Making (Capacity) Bill How do you think a stronger public awareness of human rights and equality issues could be promoted? A general public awareness campaign would be necessary. However, this must be targeted at specific groups as well as the general public as certain groups, like people with dementia, can be forgotten in a generic campaign. Mainstreaming the language of rights across public services is also am important mechanism for raising awareness of human rights and equality on a more long-term basis.
7 B: What do you think we should do? Goal 1: Leadership IHREC acts as an independent, authoritative and influential institution in the promotion and protection of human rights and equality 1. Have you any feedback on this proposed goal? 2. How do you believe that we can most effectively deliver on this goal? Perhaps the clearest and most common example of an area where people with dementia struggle to realise their rights is in the area of access to community health services. Ireland has ratified the International Covenant on Economic, Social and Cultural Rights (ICESCR) which recognises the right to health defined in relation to availability, access to, acceptability and quality of health facilities, goods and services. However, the right to health and personal social services is not defined in Irish legislation. In 2011, Seanad Éireann s Public Consultation Committee invited relevant stakeholders to make submissions on the Rights of Older People. The need for a legislative right to community care came up repeatedly. The Report of the Seanad Public Consultation Committee (March 2012) 1 reflected these concerns. The report identified two major themes emerging from across the submissions heard; the need for the rights for older people to be enshrined in a formal way and recognised and the need to support and encourage independent living at home for as long as possible. The Committee s recommendations support fully the idea that future policies relating to older people must move away from the maintenance model to the rights model and that future policies should be in step with international best practice and indeed contribute to such best practice. The Alzheimer Society of Ireland s pre-budget submission 2016 has a specific ask for adequate funding of home care for people with dementia. Goal 2: Pro-active approach to monitoring and compliance Arrangements, opportunities and full range of powers for monitoring of and compliance with equality and human rights obligations are strategically utilised are strengthened 1. Have you any feedback on this proposed goal? 2. How do you believe that we can most effectively deliver on this goal? 1
8 People with dementia as well as being aware of their rights need to be able to utilise the mechanisms that are currently in place in relation to the vindication of their rights. The Office of the Ombudsman, The Irish Human Rights and Equality Commission and the Health Information and Equality Authority (HIQA) are all highly relevant actors in this regard. The IHREC can play a lead role in ensuring that other bodies integrate human rights into their mandate. Advocacy organisations in particular have a role to play in supporting people to seek redress when and where it is needed. In many cases, where the person is marginalised, has a disability or cognitive impairment, they need the support of an independent advocate to have their rights upheld. The Citizens Information Board National Advocacy Service for People with Disabilities and the Third Age National Advocacy Programme (TANAP) have the potential to address this need. The IHREC should develop strong working relationships with these structures that have the potential to support people with dementia to realise their rights. Goal 3: Interdependence of civil, political, economic, social and cultural rights The interdependence of civil, political, economic, social and cultural rights is actively promoted and more widely recognised 1. Have you any feedback on this proposed goal? 2. How do you believe we can most effectively deliver on this goal?
9 ASI agrees that there is a direct relationship between civil, political, economic, social and cultural rights. For rights to be realised, there must be action across all these social structures. There also needs to be a move towards rights based legislation. For example, the Nursing Homes (Support Scheme) Act 2009 gave a statutory footing to arrangements for financial support for people entering nursing home care, known as the Fair Deal Scheme. The stated intention of the scheme was to provide greater clarity and equality of access to state funding for long term residential care. However, the legislation is not rights based in the sense that the Scheme is budget-capped and does not confer an actual entitlement to financial support for nursing home care. Thus, a person can fully complete the application process and meet all the criteria for eligibility but be left without a nursing home place due to lack of financial resources earmarked for the Scheme. The Office of the Ombudsman has heavily criticised the NHSS as being poorly drafted and unclear, and disagrees with the Department of Health s interpretation that it has amended the 1970 Health Act to give the State the discretion to provide long term residential care for those who cannot afford it, in place of the original obligation to provide care 2. Submissions to the 2012 NHSS review also identify the detrimental effect of having a statutory footing for support for residential care but not for care in the community, with anecdotal accounts of people who would have been able to stay at home with some extra support being forced to opt for residential care, as the only option for which financial assistance was available. This is a perfect example of how a lack of rights in one area impacts on a person s rights in another aspect of their life. Goal 4: Making Rights Real Greater awareness achieved of human rights and equality obligations and avenues of recourse amongst the public 1. Have you any feedback on this proposed goal? 2. How do you believe that we can most effectively deliver on this goal? Awareness is only one aspect for people with dementia because, as their condition progresses, advocacy becomes as important to ensure that they can realise their human rights. The IHREC must utilise the community infrastructure already in place to disseminate information in an accessible manner. The Alzheimer Society of Ireland (ASI) has services in every county in Ireland and has a professional information service. The IHREC should ensure that key organisations, like ASI, are briefed and informed. 2 Who Cares? - an Investigation into the Right to Nursing Home Care in Ireland (A Report to the Dáil and Seanad in accordance with section 6(7) of the Ombudsman Act 1980) (Office of the Ombudsman 2010)
10 Goal 5: Intercultural Understanding Positive intercultural relations are enhanced 1. Have you any feedback on the proposed goal? 2. How do you believe that we can most effectively deliver on this goal? This will mean having creative means and mediums to raise awareness of rights and redress. It will mean not only ensuring different languages, cultures are incorporated into rights discourse but also different means of communicating rights that is not just reliant on verbal communication. For people with dementia, regardless of cultural origin, communication can become more difficult as they progress and having multiple mediums to raise awareness of rights will offset this communication barrier.
11 C: Supplementary Questions 1. How can we best engage with you or your organisation to promote and protect human rights and equality? ASI has an information helpline and a range of frontline services, which means we are in contact with people with dementia and carers on a daily basis. The Alzheimer Society also has a Dementia Adviser service, which works with people with dementia and their families and carers to provide a highly responsive and individualised information and signposting service. The IHREC should ensure that ASI are kept up to date with information and developments that may benefit the rights of people with dementia and carers. As an advocacy organisation, ASI is also best placed to advocate for the rights of people with dementia and carers. 2. Are there other areas not covered by the existing goals that you think we should focus on? The need to generate a data source on human rights would be a useful development in terms of mapping what rights are most utilised / most abused. The IHREC could play a lead role in developing this dataset. 3. Imagine yourself five years from now. Thinking about human rights and equality, what changes would need to happen to enable you to judge us as an effective organisation? That legislation has been passed, which addresses the barriers to community and health care in Ireland. That the language of equality and rights becomes part of our policy discourse and that people with dementia and their carers start to use this language of rights as a basis to demand services and supports. That Ireland has ratified the Convention on the Rights of Persons with Disabilities. That Ireland has supported the development of a UN convention on the rights of older people.
12 For further information on the public consultation process for the Strategy Statement , please contact Laura Brady at or phone
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