1.0  INTRODUCTION

  Mencap supports people with a learning disability and their families in Northern Ireland by providing a range of services, supporting a membership network and by campaigning for equal rights and chances.

  The evidence submitted by Mencap in Northern Ireland should be read alongside that of our national organisation.

  This evidence is submitted because of the different circumstances experienced by people with a learning disability living in Northern Ireland such as the marked differences in service provision and the continued reliance on long stay hospitals; the impact of the conflict, and the historic underfunding of learning disability services.

  The Bamford Review of Mental Health and Learning Disability has produced a number of reports which are relevant to the matter being considered by this inquiry. We draw particular attention to the report on learning disability, Equal Lives, and to the report on human rights and equality of opportunity.

2.0  SUMMARY OF POINTS

—  People with a learning disability do not enjoy equal access to the same services and opportunities as others in their community.

—  People with a learning disability do not get the support they need to exercise their rights. Advocacy provision is under developed in Northern Ireland.

—  There is a higher proportion of people with a learning disability in Northern Ireland resident in long stay hospitals and nursing homes. There is a greater reliance in Northern Ireland on hospitals for assessment and treatment services.

—  There is a higher proportion of people with a learning disability attending day centres and a lower proportion of people with a learning disability attending college. There appear to be fewer opportunities for people with a learning disability in Northern Ireland to access supported employment.

—  According to a Mencap survey, eight out of 10 families are at breaking point because of the lack of short break services.

3.0  RECOMMENDATIONS

—  The UN Convention on the Rights of Persons with Disabilities provides an important opportunity to raise awareness of the rights and dignity of disabled people, including people with a learning disability. We believe that the Convention should be ratified by Westminster.

—  Additional investment is required, as a matter of urgency, in Northern Ireland to ensure the implementation of all the recommendations made by the Bamford Review.

—  There should be sufficient funding to support the development of a range of advocacy models to reflect the different needs and circumstances of people with a learning disability in Northern Ireland.

Paschal McKeown

Mencap in Northern Ireland

July 2007

1.0  MENCAP IN NORTHERN IRELAND

  Mencap provides support to people with a learning disability and their families in Northern Ireland by campaigning for equal lives and chances; by providing a range of services; and by supporting a membership network of 67 local groups.

2.0  EVIDENCE TO JOINT COMMITTEE ON HUMAN RIGHTS

  We welcome the decision of the Joint Committee to inquire into the human rights of adults with a learning disability.

  The evidence produced by Mencap in Northern Ireland should be read alongside that provided by our national organisation. Mencap in Northern Ireland decided to submit this evidence because of the distinct circumstances of people with a learning disability living in Northern Ireland.

  We also wish to draw attention to the Bamford Review of Mental Health and Learning Disability (Northern Ireland). This independent review was established by the Department of Health, Social Services and Public Safety in 2002 to carry out a review of law, policy and service provision affecting people with a learning disability or mental health needs in Northern Ireland.

  People with a learning disability and family carers were involved in a number of the committees and sub-committees which took forward the work of the Bamford Review.

  The Bamford Review produced a number of reports, including one specifically looking at learning disability policy and services, entitled Equal Lives[172]. Mencap in Northern Ireland has already submitted to the inquiry this and other reports which we consider to be most relevant to the work of the Committee.

3.0  EQUAL LIVES REPORT

  The 75 recommendations made in the Equal Lives report were informed by extensive consultations involving people with a learning disability and family carers. An advisory group, also called "Equal Lives" and made up of 16 men and women with a learning disability from different parts of Northern Ireland, met each month to advise the work of the Review.

  The Equal Lives report identified five core values that, it stated, should underpin all policy and service developments:

—  Social inclusion: people with a learning disability are valued citizens and must be enabled to use mainstream services and be fully included in the life of the community.

—  Citizenship: people with a learning disability are individuals first and foremost and each has a right to be treated as an equal citizen.

—  Empowerment: people with a learning disability must be enabled to actively participate in decisions affecting their lives.

—  Working together: conditions must be created where people with a learning disability, families and organisations work well together in order to meet the needs and aspirations of people with a learning disability.

—  Individual support: people with a learning disability will be supported in ways that take account of their individual needs and help them to be as independent as possible.

  These values, stated the report, are a challenge to practice and policy, which has traditionally focused too much on the need for protection and resulted in unnecessary segregation and dependency.

  The Equal Lives report indicated that there would be an increase in the numbers of people with a learning disability in the next 15 years including more parents with a learning disability and more people with a learning disability from different ethnic backgrounds to reflect the diversity of Northern Ireland communities.

  The report also drew attention to the challenges of complexity—people with complex health needs; people with severe learning and/or physical disability; people with an Autistic Spectrum Disorder and learning disability; and those with challenging behaviour. Concerns were expressed by family carers that the move towards social inclusion would lead to an even greater marginalisation of their family member due to the inaccessibility of community facilities and opportunities and the negative attitudes of some members of the public.

4.0  UN CONVENTION ON THE RIGHTS OF DISABLED PEOPLE

  The UN Convention on the Rights of Disabled People provides an important opportunity to "promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity"[173].

  Mencap welcomes the recognition given in the UN Convention to the importance of economic, social and cultural rights and supports the commitment to equality and non-discrimination outlined in the Convention.

  We believe that the Convention can play a key role in fostering respect for the rights and dignity of people with a learning disability and should be ratified as soon as possible by Westminster.

5.0  INEQUALITIES AND PEOPLE WITH A LEARNING DISABILITY IN NORTHERN IRELAND

  The Equal Lives report stated, "there was ample evidence to demonstrate that people with a learning disability did not enjoy equal access to the same range of services and opportunities as other people in Northern Ireland"[174]. It included within a list of examples:

—  People with a learning disability do not have the same opportunities in employment, further education, leisure, social life and personal relationships. Poverty contributes to some of these.

—  Fewer people with a learning disability achieve accredited qualifications.

—  There are higher levels of unmet health needs among people with a learning disability in Northern Ireland.

—  Particular attention was drawn to the difficulties experienced by people who display challenging behaviours. People who challenge services are frequently the last people to move out of institutional care and the ones most likely to be admitted to hospitals for specialist assessment and treatment. Those with the most severe behavioural problems are also more likely to be excluded from day opportunities.

—  People with a learning disability who commit offences may not come before the courts but will have to live in more confined and highly supervised settings, often long-stay hospitals.

—  Many older people with a learning disability are at particular risk of neglect, poor access to health care and marginalisation within society.

6.0  DIFFERENCES IN SERVICE PROVISION IN NORTHERN IRELAND

  The Equal Lives report stated that Northern Ireland has the highest population of people resident in long stay hospitals: 264 places per million in Northern Ireland, compared with 15 places per one million in England and Wales and 163 places per one million in Scotland.

  The report also drew attention to the higher level of places provided (or to be provided) in Northern Ireland hospitals for assessment and treatment admissions; the higher proportion of people with a learning disability who lived in nursing homes in Northern Ireland compared to England and Wales; the lower proportion of people in supported housing within Northern Ireland than in Great Britain; and the higher proportion of people with a learning disability who attend day centres in Northern Ireland.

  The Equal Lives report stated that none of the Health and Social Services Trusts in Northern Ireland achieved the minimum number of funded accommodation places suggested by the Department of Health for England and Wales.

  Fewer people with a learning disability attend college in Northern Ireland (4.1%) than in Great Britain (5.7%), and fewer are enrolled on a full-time basis (45% in Great Britain compared with 11% in Northern Ireland).

  Although there are no centrally collated statistics in Northern Ireland, the Equal Lives report stated that there appear to be more opportunities for people with a learning disability to be in supported employment in Great Britain.

  The Bamford Review, in its report on equality and human rights, drew attention to the fact that people with a learning disability in Northern Ireland did not have a right to education until 1986 and recommended that adults with a learning disability have access to lifelong learning opportunities to help address this disadvantage.

7.0  IMPACT OF THE CONFLICT IN NORTHERN IRELAND

  Most people with a learning disability live in and are members of local communities. They are likely, therefore, to have experienced the conflict in the same way as others in their community. They are just as likely, for example, to have had members of their family killed or injured during the conflict, just as likely to have experienced sectarian verbal abuse, just as likely to know victims of punishment attacks.

  Unlike other members of their community, however, services for people with a learning disability are usually non-denominational and may be located outside the local area. Usually people with a learning disability travelled outside their community to attend schools and day centres. This may have meant that they were not viewed as being part of their local community and made inclusion in the life of their local community more difficult. In addition, the natural protectiveness of parents coupled with fear and uncertainty associated with the conflict is likely to have limited the opportunities they had to travel independently or to take part in social activities.

8.0  EQUAL ACCESS TO AND ENJOYMENT OF RIGHTS

  The Bamford Review, in its report on human rights and equality of opportunity, acknowledged the barriers which prevent people with a learning disability enjoying the same rights as others. These barriers include:

—  The attitudes of others about their capacity to make decisions and to contribute to the life of their local community.

—  A lack of knowledge by people with a learning disability and their families about their rights as well as an absence of support to exercise their rights.

—  Unequal access to the same services, opportunities and experiences as others.

—  The stigma and discrimination experienced by people with a learning disability which can lead to greater isolation and exclusion and discourage people with a learning disability from taking part.

  The importance of accessible information and accessible processes in supporting people with a learning disability to enjoy the same rights as others was recognised by the Bamford Review.

9.0  ADVOCACY: SUPPORT TO SPEAK OUT

  The Bamford Review recognised, too, the vital role that advocacy could play in supporting people with a learning disability to exercise their rights. It acknowledged the recent development of advocacy in Northern Ireland and recommended the development and funding of a range of advocacy models to reflect the different circumstances and needs of people with a learning disability.

10.0  SUPPORT FOR FAMILIES

  Mencap's survey of families in Northern Ireland caring for people with severe or profound learning disabilities found that:

—  8 out of 10 families have reached or come close to breaking point because of a lack of a short break service.

—  8 out of 10 families provide more than 15 hours care every day.

—  6 out of 10 families who are in poor physical health say it is because of the amount of care they provide.

—  10 out of 10 families who are in poor mental health say it is because of the amount of care they provide.

—  7 out of 10 families have not had a carer's assessment.

  Mencap believes that support for families is vital if people with a learning disability are to experience equal rights and chances. We believe that there should be an automatic entitlement to short breaks for families caring for people with a learning disability who live in the family home and get the care component of the Disability Living Allowance. We believe that each family should have their needs assessed and receive a written support plan. We believe that each Health and Social Services Trust should audit its provision of short breaks and take steps to make sure that every family that needs a short break gets one.

11.0  VISIBILITY IN POLICY DEVELOPMENT, FUNDING PRIORITIES AND MONITORING

  The Bamford Review acknowledged the historic underfunding of learning disability and mental health services. It recognised, too, the need to ensure that funding allocated by the government to localities did not disadvantage small, geographically dispersed populations, like people with a learning disability. Mencap believes that the government must identify, as a priority, the funding of the recommendations made by the Bamford Review in Northern Ireland.

  We also believe that the distinct needs and circumstances of people with a learning disability are often considered, if at all, as a footnote by those developing mainstream policies and priorities. The absence of research about the circumstances and experiences of people with a learning disability in Northern Ireland adds to their invisibility. The failure to monitor the uptake and use of mainstream services and opportunities by people with a learning disability also reinforces their invisibility and exclusion.

12.0  THE DIGITAL DIVIDE

  Mencap draws attention to the increasing reliance by the government and public services on internet technology as a means of providing information about, and engaging with, public services. We believe that additional investment is needed to ensure the accessibility of such developments, to enhance the skills and access of people with a learning disability to such opportunities, and to provide alternative targeted approaches to people with a learning disability who are unable to benefit from such initiatives.

13.0  SECTION 75 OF THE NORTHERN IRELAND ACT

  Mencap draws attention to Section 75 of the Northern Ireland Act. We suggest that this positive duty to promote equality of opportunity has helped address some of the barriers and disadvantages experienced by people with a learning disability. We believe, however, that additional resources and support are essential if people with a learning disability are to enjoy equality of opportunity in Northern Ireland in all aspects of their life.

14.0  CONCLUSION

  Mencap in Northern Ireland welcomed the opportunity to contribute to this important inquiry.

Paschal McKeown

Policy and Information Manager

20 July 2007

173   UNCRDP Article 1 Back

174   Equal Lives, op cit Back