Ms Sarah Lennon:

I thank the committee for the invitation to speak here today. I will share my time with my colleague, Ms Julie Helen. As the Chairman said at the start, it is a very important topic.

Inclusion Ireland is a national, rights-based advocacy organisation that works to promote the rights of people with intellectual disabilities. Our work is underpinned by the values of dignity, inclusion, social justice, democracy and autonomy. Intellectual disability involves a greater than average difficulty in learning. A person is considered to have an intellectual disability if their intellectual functioning is below average but also their adaptive skills may be below average and the condition is present from childhood. Childhood is particularly important for people with intellectual disability.

Through our advocacy work and community engagement we have contact with people with intellectual disabilities and their family advocates on a daily basis and from all across the country. We know that people with intellectual disabilities experience a higher instance of mental health difficulties than the general population. There is much supposition and reasons out there as to why that might be the case but we know that people with intellectual disability are more likely to have difficulty with their mental health than the general population. As recently as 2015, the Health Services Executive estimated that 25% of people with mild or moderate intellectual disabilities also experience mental health difficulties and if behavioural difficulties are included then up to 50% of people can experience that diagnosis. As members can appreciate, that is a large number of children and adolescents.

The recent Health Research Board, HRB, statistics show that 35% of all people with intellectual disability are between zero and 19. In a moment, my colleague, Ms Julie Helen, will talk about our community engagement work and some of the case studies that we have encountered. I am aware that we use a lot of statistics and it is nice to be able to colour it with some case studies from the ground.

A Vision for Change has been set out but both the National Disability Authority and the Irish College of Psychiatrists have commented upon the fact that people with intellectual disabilities experiencing mental illness do not have their needs adequately met. A Vision for Change is not new but it sets out a clear structure for how mental health services for children and adolescents who have an intellectual disability should be delivered. In the policy's recommendations, children and adolescents with a diagnosis of mild intellectual disability should be seen in mainstream child and adolescent mental health services, CAMHS. Children and adults with moderate to severe intellectual disability - that is not language we tend to use but they are the terms set out in the policy - should be seen by one of 15 mental health and intellectual disability, MHID, teams across the country. We will see from the case studies what the experience is like on the ground, and what the mainstream experience has been for people as well.

Our efforts prior to the meeting to find up-to-date information on how many MHID teams have actually been established proved fruitless. I do not know what the experience of other witnesses has been in that regard. There is evidence that the numbers of teams is far below the recommended number in A Vision for Change. In 2015 the Mental Health Commission reported that 12.95 adult MHID posts were under the auspices of or funded by the HSE. Approximately 300 posts for adult MHID and 150 MHID posts for children and adolescents were recommended for child and adolescent mental health services in A Vision for Change.

The United Nations Convention on the Rights of Persons with Disabilities has an article devoted to children which states "States Parties shall take all necessary measures to ensure the full enjoyment by children with disabilities of all human rights and fundamental freedoms on an equal basis with other children." Similarly, Article 25 states "States Parties recognize that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability." It is clear that were Ireland to ratify the convention, it would not be in compliance with these articles. That is another one to add to the list of areas we have identified where we need to be in compliance before we ratify.

The case studies will also illustrate the difficulties that co-morbidity can provide. Where a child or adolescent has intellectual disability and mental illness there is often no clarity over responsibility. Children with autism are often excluded because anxiety issues are very common for those on the autism spectrum. Those young people then fall through the cracks.

In a broader context there are practical things that can be done to improve the experience of mental health services for everybody, but for people with intellectual disabilities in particular. In Inclusion Ireland we feel very strongly about accessible information. More can be done in that regard. We had a look at the Mental Health Commission's website and while I have a lot of respect for it, the only document in an accessible version on it available to people with intellectual disabilities is from 2010 and it was a code of practice for staff. More could be done such as putting more information about mental health services, mental health tribunals and national standards in an easy-to-read format. It is also important that information is available on how to make a complaint. On that note I will hand over to my colleague, Ms Helen.