Rose Conway Walsh (Sinn Fein) | Oireachtas source

I thank the Minister for coming to the House on this very important issue. I want the Minister to understand the real hardship that faces parents of children with autism who have no care options in their local area. I refer specifically to Mayo, Galway and Roscommon. The lack of services and the huge waiting lists for everything, from occupational therapy to physiotherapy to respite, is completely unacceptable. Autism services are constantly put to the bottom of the pile and everything is a battle. Parents just do not know whom to go to for help and the confusion that exists is a large part of the problem. Parents are trying to find out whom to contact but are sent from Billy to Jack and back again.

There needs to be clear information regarding the new amalgamation of services. Who is responsible for what? Parents have no idea whom they are supposed to contact for therapy. There is a lack of resources and we need to know where the money is going. We need to know why many cases are not reached because many children and families who are living with autism do not even get the resources that are available. Parents tell us of being on lists for respite care for between two and three years but now they are told it will be years before they get the respite they need. They are asking why children with ASD in Mayo are prevented from having one-to-one intervention with a clinical psychologist or counselling of any type. Children with ASD are shut out from the community psychologist and from CAMHS, which will not provide it as it says it is for the Western Care Association to do so. Children with ASD who have mental health issues cannot get this type of intervention either, which is causing serious problems because children and adults with autism who are developing mental health challenges are not being dealt with in time.

There are good examples of emergency care but where children and young adults display mild mental health difficulties they need to be caught at an early stage, rather than allowing the problem to escalate. Given the cost of private classes, for example for speech therapy and occupational therapy, and the travel associated with accessing them, does the Minister accept that this is not an option for many families?

To list out services available at high cost and at long distances from these families means nothing to them as they are already really struggling. I know of two girls in Mayo who have autism and are non-verbal. Both attended the mainstream national school and are getting on well, as many of these children do when they are in the right setting and get the right supports. The children saw a speech therapist eight or nine times over a period of two and a half years through the Western Care Association. For the past 18 months, however, the girls' parents have been paying privately for speech therapy. They had no choice but to do this or they would lose what they had gained from the classes they had already attended. This is leaving families in real poverty because they do not have the money for these badly-needed services. They want to see leadership from their politicians, not empathy and not excuses.

The system is complicated. Children come under the Western Care Association when they start school but are then transferred to the HSE. Parents are in absolute desperation. It is not only young children but it goes right through the life cycle. There is a huge difficulty when children reach the age of 18 and are told they are not in somebody's remit. I ask the Minister to understand what services are there and to make people accountable for providing them. I also ask him to make it clear to parents where they can go and to give them the support that is needed. I want to work with the Minister to sort this out for Mayo and the west so that children are not left behind with their families in desperation.