1.  INTRODUCTION

  1.1  Disability Action is a pioneering Northern Ireland charity, working with and for people with disabilities. We work with our members to provide information, training, transport, awareness programmes and representation for people regardless of their disability; whether that is a physical, mental, sensory, hidden or learning disability.

  1.2  More than one in five (300,000) people in Northern Ireland has a disability and the incidence is higher here than in the rest of the United Kingdom. Over one quarter of all families here are affected. As a campaigning body, we work to bring about positive change to the social, economic and cultural life of people with disabilities and consequently our entire community.

  1.3  Our network of services is provided via our Headquarters in Belfast and three regional offices in Carrickfergus, Derry and Dungannon.

  1.4  Disability Action has recently established a Centre on Human Rights for Disabled People. The Centre aims to secure the human rights of people with disabilities in Northern Ireland and to foster a culture of human rights for disabled people through education and capacity building within the sector, and the judicious use of lobbying, influencing and legal challenge.

  1.5  The main elements of the Centre's work is to:

—  Create and sustain a sectoral coalition of human rights expertise on disability.

—  Identify and deliver key campaigns to ensure the abuse of disabled people is recognised and accepted as a mainstream human rights issue.

—  Develop and ensure the delivery of an effective system of accessible legal redress.

—  Deliver key policy changes which promote the human rights of people with disabilities.

—  Develop and mainstream a system of human rights proofing which includes disability issues and to report on the extent to which existing protection systems recognize the human rights abuses faced by disabled people.

  1.6  The Centre on Human Rights at Disability Action commends the decision of the Committee to inquire into the human rights of adults with learning disabilities. We welcome the opportunity to submit evidence in the hope that the specific circumstances and human rights abuses experienced by people with learning disabilities in Northern Ireland will be urgently addressed.

  1.7  An estimated 2% of the Northern Ireland population has some form of learning disability. This is over 33,000 people. Of these 8,000 have a diagnosed learning disability and almost 4,000 have a severe or profound learning disability.

  1.8  The number of adults with an identified learning disability is higher in Northern Ireland (9.71 per 1,000) than the Republic of Ireland. It is also higher than parts of Great Britain such as Scotland where an estimated 5.45 per 1,000 are in regular contact with services.[5]

  1.9  People with learning disabilities are, first and foremost, equal citizens who possess the same rights as the rest of the population and whose lives are of equal value and worth to non-disabled people.

  1.10  Apart from the recent Review on Mental Health and Learning Disability (Northern Ireland), the human rights of people with learning disabilities in Northern Ireland has received inadequate attention.

  1.11  The Centre on Human Rights has identified a number of pertinent issues impacting on the human rights of people with learning disabilities. The evidence contained within this submission is concerned with, and draws upon, the experiences of people with learning disabilities living in Northern Ireland.

  1.12  The Centre ultimately believes that much more needs to be done to ensure that the human rights of people with learning disabilities in Northern Ireland are actively protected and promoted.

2.  GENERAL COMMENTARY

Human Rights Infrastructure in Northern Ireland

  2.1  The context of equality, human rights and policymaking in Northern Ireland has been distinctive and made complicated by the "power relay" that has manifested itself in the ongoing struggle between Direct Rule by Westminster and devolved government via the Northern Ireland Assembly. Northern Ireland's capacity for policy-making, self-government and addressing of social and economic concerns, has thus been constrained by wider constitutional questions.

  2.2  The most significant example of policy divergence between Northern Ireland and Great Britain has been the implementation of Section 75 of the 1998 Northern Ireland Act.

  2.3  Section 75 clearly outlined a policy-making process based on a participatory form of democracy and ensured the implementation of the first positive equality duty in the UK. The Section 75 statutory duty requires public authorities throughout Northern Ireland to have due regard to promote equality of opportunity between nine different groups, including people with disabilities, through the mainstreaming of policy processes.

  These nine groups include:

—  persons of different religious belief, political opinion, racial group, age, marital status or sexual orientation;

—  men and women generally (including transgendered people);

—  persons with a disability and persons without; and

—  persons with dependants and persons without.

  2.4  As such, Northern Ireland has a relatively strong record of progress and development in the field of equality. Such progress has however, been less evident in relation to disability specifically, "encumbered by the government's focus on socio-economic inequalities between the Catholic and Protestant populations".[6]

  2.5  Disability has, until fairly recently, been an overlooked or "forgotten" dimension of human rights.[7] Despite the existence of various human rights instruments at regional, European and international levels, people with learning disabilities continue to experience marginalisation, exclusion, disadvantage, and discriminatory assumptions about their quality of life. That is, people with learning disabilities in Northern Ireland continue to be subject to extensive human right violations.

  2.6  The lack of substantive change in Northern Ireland for people with learning disabilities in their daily lives is partly due to:

—  The lack of strategic priority on human rights for disabled people in general.

—  The lack of awareness of human rights issues for people with learning disabilities, amongst themselves, their organisations, the service delivery sector, politicians and the general public.

—  A strong paternalist approach which, whilst often claiming good intent, discourages the perception of people with learning disabilities as human rights holders.

—  The lack of accessible legal support, including the lack of independent advocacy services, for people with learning disabilities and their carers to instigate human rights cases.

—  The lack of effective mainstreaming of policies for people with learning disabilities and limited evidence of joined-up service delivery.

—  Assumptions that people with learning disabilities do not have the capacity for decision-making or involvement in decision-making processes.

  2.7  Whilst we are aware of the need to balance individual rights with the rights of others, we remain concerned that the rights of those without disabilities continue to be accorded greater priority. The Centre on Human Rights is alarmed at the often contingent and provisional nature on which the rights of people with learning disabilities appear to be based, thus implying that the rights of people with learning disabilities are secondary to those of everyone else.

3.  SPECIFIC COMMENTARY

The Review of Mental Health and Learning Disability (Northern Ireland)

  3.1  In October 2002, following similar exercises by government in England and Scotland, the Department of Health, Social Services and Public Safety (DHSSPS) initiated a major, wide-ranging and independent review of the law, policy and provision affecting people with mental health needs or a learning disability in Northern Ireland. This Review, known as the Bamford Review of Mental Health and Learning Disability consists of a number of interlinked reviews, encompassing policy, services and legislation.

  3.2  The Bamford Review, throughout its reports, and in particular, the Equal Lives and Human Rights and Equality of Opportunity reports, highlighted the extent of exclusion and disadvantage experienced by people with learning disabilities.

  3.3  The Review provides an ethical foundation and rights based vision on which substantive recommendations and proposals for service reform and modernisation, including legislative reforms, are based.

  3.4  The Centre on Human Rights welcomes the Bamford Review and believes that implementation of the recommendations of the Review is vital to future provision of services for people with learning disabilities. We strongly encourage the Committee to utilise these reports.

The "Troubles" and their impact

  3.5  The 30 years from 1968 onwards, commonly referred to as "The Troubles", were a period of prolonged violence and civil unrest in Northern Ireland.

  3.6  Systematic research exploring the impact of the Troubles on people with learning disabilities and their families is noticeably absent. Nevertheless, a range of pertinent issues can be identified:

—  The persistent threat of violence heightened overprotective attitudes towards people with learning disabilities, and limited opportunities to become more independent.

—  The potential risk of using public transport during times of violence reduced opportunities to travel independently.

—  The Troubles reduced opportunities for social, economic and cultural activities and compounded the social isolation of young people with learning disabilities.

—  The Troubles reduced opportunities for families to establish support networks with others in similar situations.

—  The Holy Cross School dispute in Belfast in 2001 necessitated the occasional closure of an adjacent day centre for people with learning disabilities.[8]

Legislative provision

  3.7  Delays in introducing legislation such as the Special Educational Needs and Disability Order have compounded the lack of legal protection and redress available to people with learning disabilities in Northern Ireland compared to their counterparts in Great Britain.

  3.8  The Centre on Human Rights further argues that the prolonged absence of capacity related legislation in Northern Ireland compared to Great Britain breaches baseline levels of established international standards on health and well-bring.

  3.9  The Committee's call for evidence is extremely timely given the current and ongoing implementation of the recommendations emerging from the Review of Public Administration. The Centre on Human Rights at Disability Action firmly believes that the Review of Public Administration provides Government and public bodies with a unique opportunity to both protect and promote the human rights of people with learning disabilities within new and reorganised structures. We strongly recommend that people with learning disabilities, supported by their advocates as appropriate, are represented on structures including the new Education Advisory Forum (EAF), Local Health and Social Care Commissioning Groups, and Community Planning structures.

Health and Social Care

  3.10  It is abundantly clear that there are high levels of unmet health needs among people with learning disabilities in Northern Ireland. Examples of undetected health needs include obesity, tooth decay, hypertension/hypotension, eczema, poor circulation, diabetes, hearing difficulties and reduced vision.[9]

  3.11  The extensive health inequalities that persist suggests a disregard or ignorance of a number of human rights standards, not least Article 12 of the International Convention on Economic, Social and Cultural Rights (ICESCR) which stipulates a right to enjoy the highest attainable standard of health; and Articles 2, 3 and 14 of the Human Rights Act which specify a right to life; the right to be free from inhuman and degrading treatment; and the right to non-discrimination respectively.

  3.12  Many people with learning disabilities continue to receive unequal treatment because of presumptions by health professionals of what constitutes an appropriate standard of healthcare and quality of life for people with disabilities. Such presumptions are not always intentional and may be simply due to a lack of awareness and training. Similar issues have been raised by people with learning disabilities in a consultative exercise organised by LEAD-NI[10] on behalf of the DHSSPS. Whilst many participants had good experiences of GPs and hospital staff in general, there were instances of poor communication between health and social care staff and service users.

  3.13  The most extreme form of treatment denial can be found in Do Not Resuscitate policies and the failure to make life-saving interventions. The Centre on Human Rights is aware of cases where Do Not Resuscitate policies continue to be used without engagement with, or consent from, patients with disabilities. We are concerned that people with learning disabilities may be subject to such practices.

  3.14  Research indicates that approximately 3% of people with learning disabilities have smear tests compared to 86% of the general population; 17% have breast screening compared to 76% of the general population.[11]

  3.15  Research carried out by the DHSSPS reported that some people with learning disabilities have expressed fear in engaging with health and social care provision. This is due, in part, to uncertainty about what happens when making contact with health services and compounded by previous negative experiences during earlier contacts with acute general hospitals or health professionals.[12] The lack of equitable access to healthcare for people with learning disabilities has also been highlighted by the Promoting Access project carried out in the Western Health and Social Services Board.[13]

  3.16  The Equal Lives report illustrates the distinct lack of health education for people with learning disabilities, and in particular a lack of accessible information relating to health promotion issues and sexual and reproductive health. Equal Lives also highlights the lack of general sexual and reproductive health care services for people with learning disabilities. Issues such as adolescence, premenstrual syndrome, cervical and breast screening, menopause and sexual health screening receive insufficient attention.

Housing, Residential and Community Care

  3.17  Northern Ireland has the highest proportion of people living in long stay hospitals in the UK.[14] Many people with learning disabilities are not given the choice of where to live or who to live with. Research carried out in 2004 by McConkey et al highlighted the need for housing and services providers to afford greater consideration to the views and personal preferences of people with learning disabilities in choosing where to live.[15]

  3.18  Although the number of people with learning disabilities living in hospitals has been declining since the 1980s, in 2003 it was estimated that 455 men and women with a learning disability had no home outside a hospital. This is in spite of the fact that hospital resettlement has been the cornerstone of Government policy in Northern Ireland since 1995. This has been further highlighted by a recent BBC investigation into the circumstances of people with learning disabilities in Muckamore Abbey Hospital earlier this year.

  3.19  The BBC investigation found that 17 people with learning disabilities had been moved to locked wards even though they did not require this type of secure accommodation; a fact which potentially breaches Article 3 of the Human Rights Act, the right to be free from inhuman or degrading treatment and Article 5, the right to liberty.

  3.20  Nearly 1900 people with learning disabilities are in some form of residential provision. Approximately 450 people with learning disabilities in Northern Ireland continue to live in a long stay hospital despite having been assessed as ready to move to a new home in the community.

  3.21  The average age of people living in hospital in Northern Ireland is 49 years. Many have a severe learning disability and more complex needs. They typically live in ward-style accommodation and few have their own bedroom. In the DHSSPS report, A Fair Chance, a number of people spoke of being traumatised by the threat of admission to a "special" hospital "as a response to trivial deviations from acceptable behaviour".[16] There was also the widely held view that there was no need for "special" hospitals and that these should be closed down.

  3.22  The Centre on Human Rights is aware of instances where fundamental abuses persist. Abuses of privacy, degrading treatment, humiliation and alarming levels of disrespect continue. Such humiliation is exacerbated by the present exclusion of Private Care Homes from the Human Rights Act 1998.

  3.23  The Centre on Human Rights remains concerned that the rights of people with learning disabilities can be interfered with on the basis of "best interests", particularly in relation to mental health service provision. We strongly believe that emphasis should be on the improvement of health and social care policy and provision and not on the restriction of people's rights.

Relationships

  3.24  The subject of relationships is scarcely given attention despite the articulated rights of all not only to respect for private and family life (Article 8, Human Rights Act), but to marry and found a family (Article 12, Human Rights Act). Current legislation in Northern Ireland, which regulates the sexual activity of persons with "mental impairments", is outdated and arguably contravenes the Human Rights Act.[17]

  3.25  People with learning disabilities do not have the same opportunities to form friendships and relationships. It is clear that people with a learning disability do not usually marry and rarely have children. Qualitative evidence suggests that the attitudes of society in Northern Ireland and the limited involvement of people with a learning disability in making their own decisions, have resulted in these circumstances.

  3.26  The Centre on Human Rights is aware of instances where people with learning disabilities living in residential accommodation have been discouraged from forming relationships.

  3.27  A recent report on the sexual health of people with learning disabilities in Northern Ireland shows that there is a lack of acknowledgement of the sexuality of people with learning disabilities.[18] The main findings from the report indicated that:

—  People with learning disabilities want to learn more about sexual health and relationships.

—  People with learning disabilities want to have relationships and express fears of being lonely. But they feel over-protected by professionals and family carers. Consequently there are few opportunities to develop relationships and meet new people.

—  Some family carers want their child to have the same rights as everyone else. But they feel embarrassed to talk about sex with their children and are concerned for their safety. Feeling unsupported and isolated stops them from raising these issues in the home.

—  Professionals and front line staff are aware that the issues around sex and sexuality are often not being addressed. However, they are inhibited by being under-resourced, under-trained and at times restricted by a lack of clear guidelines and policies to support them.

  3.28  Thus, whilst staff and family carers are fearful of sexual abuse occurring, they seem reluctant to offer specific guidance in self-protection and prefer instead to rely on prohibition and supervision. The Centre on Human Rights is greatly concerned about the potential for the abuse of people with learning disabilities due to the lack of clear and accessible information and knowledge on this issue.

  3.29  The report recommends greater access to information, education and support for people with learning disabilities and their family carers. It also calls for clear policies and guidelines and better training and resources to help front-line staff and professionals to implement them. Prioritisation by education and social services on the protection of vulnerable people needs to be balanced with opportunities for personal growth and development to ensure that people with learning disabilities are treated with dignity and respect.

Bullying

  3.30  Approximately 88% of people with learning disabilities report being bullied. This issue has been consistently raised by people with learning disabilities at various consultative exercises in Northern Ireland.[19]

  3.31  Some participants spoke of how unsafe they felt in their own homes and how they had been subjected to regular verbal abuse because of their learning disability.[20]

Education

  3.32  The right to education for children with a learning disability in the UK was not extended to children with a learning disability in Northern Ireland until 1987. This means that young people over the age of 18 have not experienced the same educational opportunities as other children. Most adults with a learning disability have never been to school.

  3.33  This disparity suggests an apparent breach of Article 1(1) of the UNESCO Convention against Discrimination in Education whereby the definition of discrimination includes the "subjection of a person or group to education of an inferior standard" to the extent that person is not enabled to achieve his or her full potential.

  3.34  Young people with a learning disability and their families encounter difficulties throughout the transition process from childhood to adult life. Whilst there are examples of good practice and partnerships between schools and the community and voluntary sector, access to such initiatives are inconsistent.

  3.35  Equal Lives highlighted concerns about the lack of progression from Further Education provision. This is partly due to students not being able to gain accredited awards from their study; the lack of links with job training and work experience; and students repeating the same course content in subsequent years.[21]

Advocacy and Participation

  3.36  People with disabilities have limited opportunities to participate in the life of their local community. This is in spite of Section 75 obligations for public authorities in Northern Ireland to actively consult with a range of groups, including people with disabilities. Consulting with people with a learning disability requires the development of a process which is sensitive to their specific needs and which listens to, values, and acts on their views.

  3.37  The issue of who does and who does not have decision making capacity is complex. For people with learning disabilities, assessment and determination of capacity is particularly contentious. Research carried out by Disability Action in 2005 suggests that the effect of the electoral system's requirement for people with learning disabilities to make a declaration of capacity is one of discouragement.[22]

  3.38  The LEAD-NI report (2002) found that people with a learning disability wanted to be consulted in issues that affect them. However, the voice of the individual concerned, and of those closest to them, is all too easily ignored in favour of `professional' and subjective judgement. There is a clear and urgent need to promote empowerment and advocacy for people with learning disabilities to participate in the decision making process.

  3.39  The Centre on Human Rights for Disabled People is particularly concerned at the lack of independent advocacy services. People with learning disabilities should not be prevented from making decisions due to a lack of effective communication support, inaccessible information or a lack of advocacy services. It is vital that sufficient resources are in place and that these are effectively monitored. People with learning disabilities should have access to advocacy services that are appropriate, timely and effective, and which take account of the diversity, preferences and specific needs of different cultural groups. This can be achieved through self-advocacy, peer advocacy and group advocacy. Such services are currently unavailable in Northern Ireland.

  3.40  The Centre remains concerned that people with learning disabilities who reside in institutional or restrictive settings on a temporary or permanent basis are not given real opportunity to express choice and demonstrate capacity to make a particular decision(s) at a particular time.

  3.41  The Centre is particularly concerned at the lack of specific skills and training among service providers in supporting people with learning disabilities.

  3.42  The availability of accessible transport is of particular significance in ensuring that people with learning disabilities can participate in policy formulation and consultation processes.

The United Nations Convention of the Rights of Persons with Disabilities

  3.43  The Centre on Human Rights for Disabled People at Disability Action welcomes the new Convention on the Rights of Persons with Disabilities.

  3.44  The international Convention provides a major boost for disabled people's human rights throughout the world. The Centre hopes that the Convention will have a significant impact in effectively securing the human rights of people with learning disabilities throughout Northern Ireland and in challenging the human rights violations that persist. It is imperative that UK government ratifies the Convention as soon as possible.

  3.45  The Convention will only be as effective as member states allow it to be. The Centre on Human Rights strongly recommends that Government and the voluntary and community sector engage with the Convention.

  3.46  The Convention will place a legal obligation on governments to adopt appropriate measures to ensure that the rights of all disabled people are protected and promoted. The Centre strongly encourages government to take active measures to engage with people with learning disabilities in light of the Convention and to adopt a rights based approach at all levels of policy and practice.

  3.47  The Centre on Human Rights is working to produce information materials for people with disabilities, including people with learning disabilities. Information will be provided in Plain English and Easyread as well as other accessible formats.

  3.48  The Centre on Human Rights is also working to raise awareness among people with a range of disabilities of their rights under the Human Rights Act, the new Convention and other appropriate international standards, to empower people with disabilities to advocate for themselves.

4.  CONCLUSION

  4.1  The Centre on Human Rights for Disabled People has welcomed the opportunity to respond to the Committee's Call for Evidence. We trust that the Joint Committee on Human Rights will seriously consider the issues that have been raised in this submission, recognising the extensive contribution that people with learning disabilities can make to our society.

  4.2  We look forward to continued dialogue on this and other issues of major significance to people with disabilities throughout Northern Ireland.

1 May 2007

6   Hill, M, McAuley, C, McLaughlin, E and Porter, F (2006) Eighty Years of Talking about Equality in Northern Ireland: A History of Equality Discourses and Practices, Belfast: Equality and Social Inclusion Project, Working Paper 5. Back

7   R Daw (2005) Human Rights and Disability: The Impact of the Human Rights Act on Disabled People, DRC/RNID. Back

8   Review of Mental Health and Learning Disability (Northern Ireland) Equal Lives: Review of Policy and Services for People with a Learning Disability in Northern Ireland, September 2005. Back

9   Leggett, P (2001) Footsteps to health: multidisciplinary heath screening of adults with learning disabilities 1999-2001, Cullybackey, Maine Medical Centre.
McConkey, R, Barr, O, Fleming, P & Milligan, V (2003) Evaluation of Challenge 2000: Health Screening and Health Promotion Service provided by North & West Locality Consortium (Belfast) to people with learning disabilities. (Clifton Street Surgery, Belfast and EHSSB). Back

10   Northern Ireland Coalition on Learning Disability. Back

11   Band, R (1998) The NHS-health for all? People with learning disabilities and health care, MENCAP. Back

12   Department of Health, Social Services and Public Safety (2002) A Fair Chance: Report on a consultation exercise facilitated by LEAD-Northern Ireland Coalition on Learning disability, Belfast: DHSSPS. Back

13   Barr, O (2004) Promoting Access: The Experiences of Children and Adults with Learning Disabilities and their Families/Carers who had contact with Acute General Hospitals in the WHSSB Area, WHSSB. Back

14   Mulvany, F, Barron, S and McConkey, R (2006) Residential provision for adult persons with intellectual disabilities in Ireland Journal of Applied Research in Intellectual Disability.
Review of Mental Health and Learning Disability (Northern Ireland) Equal Lives: Review of Policy and Services for People with a Learning Disability in Northern Ireland, September 2005. Back

15   McConkey, F, Sowney, M, Milligan, V and Barr, O (2004) Journal of Policy and Practice in Intellectual Disabilities, Vol 1, Issue 3-4: pp115-125. Back

16   Department of Health, Social Services and Public Safety (2002) A Fair Chance: Report on a consultation exercise facilitated by LEAD-Northern Ireland Coalition on Learning disability, Belfast: DHSSPS (p 32). Back

17   Simpson, A, Lafferty, A and McConkey R (2006) Out of the Shadows: "Our voices aren't going to go quietly into the dark anymore", The Family Planning Association: Belfast. Back

18   Ibid, p 96. Back

19   Department of Health, Social Services and Public Safety (2002) A Fair Chance: Report on a consultation exercise facilitated by LEAD-Northern Ireland Coalition on Learning disability, Belfast: DHSSPS.
Review of Mental Health and Learning Disability (Northern Ireland) Equal Lives: Review of Policy and Services for People with a Learning Disability in Northern Ireland, September 2005. Back

20   Ibid, p 11. Back

21   Ibid, p 45. Back

22   Disability Action (2005) Polls Apart: Access to Polling Stations, A Study by Disability Action. Belfast. Back