Ms Julie Helen:

Inclusion Ireland receives many queries for information or support from families of children and adolescents with intellectual disabilities and some of those also have experienced difficulty accessing CAMHS in cases where a mental health difficulty arose. I will now detail some brief case studies so that the committee can get a flavour of our work on the ground with the community engagement team.

A parent in HSE Dublin north east requested the service of CAMHS. Her daughter had self-harmed and had spoken of suicide. CAMHS said it would not take the case as she was almost 17. Adult services would not take the case as the child was not yet 18. It was only due to a threat of a complaint under the Health Act that the child was seen.

The mother of a young boy in HSE Dublin north east required the services of CAMHS. The boy self-harmed and on one occasion had such an episode of self-injuring behaviour that he had to be brought to an accident and emergency department. He was referred to CAMHS, which would not offer him a service as his case was not deemed to be severe enough. After going home, his mother was reduced to begging CAMHS for a social worker.

In separate cases, two teenage boys in HSE Dublin north east both began to engage in seriously challenging behaviour. Their parents were referred to CAMHS, which would not offer either child a service as their intellectual disability was more than mild.

A parent in HSE Dublin mid-Leinster was referred to CAMHS as their 14-year old child was self-harming and had attempted to take their life. CAMHS did not see the child as the case was seen as a disability issue rather than a mental health difficulty. The child was inappropriately referred to the school guidance counsellor for help.

A social worker in HSE west contacted Inclusion Ireland when she referred a young boy of 13 to CAMHS. The boy is out of school due to serious behavioural issues. The professionals with whom the boy is engaged believe that there may be an underlying mental health issue. CAMHS would not take the referral due to age grounds and disability grounds.

A mother in Cork contacted us when she could not get an appointment with CAMHS for her 11-year-old daughter who has anxiety issues and is on the autism spectrum. The family has been waiting for one and a half years for support with the issue.

Services have been approached by families to provide information to young people with intellectual disabilities and mental health issues but there is a lack of accessible information in this area.

Inclusion Ireland has several recommendations that it would like the committee to consider. Our key recommendation is to make sure that children and adolescents with intellectual disabilities are included in its deliberations on mental health. We ask the committee to consider the case studies we have put forward and to consider children with all levels of disability regardless of the label they are given.

The 15 child and adolescent mental health and intellectual disability teams recommended in A Vision for Change need to be put in place and appropriately staffed by professionals with knowledge of both mental health and intellectual disability in order that people can get the support they need when they need it.

Clarity is needed on how children with intellectual disabilities and mental health difficulties are dealt with. The pathways need to become clear in order that people know where to turn. We must not forget those with mild intellectual disabilities.

Further support is needed for children and adolescents who have autism spectrum disorder as they too often fall through the cracks. More inter-agency working and joined-up thinking is needed between the child and adolescent mental health services and disability services in order that waiting times can be reduced for children and adolescents.

Accessible information needs to be developed for children and adolescents with intellectual disabilities around how the mental health system works for them. They have a right to information, which could be provided in an easy to read format and plain English.