Ms Deirdre Archbold:

Many parents are concerned that responsibility for speech and language and occupational therapy have been placed on them. They feel a one-off course here and there will never be adequate to support a child as it takes a professional between four and six years to assess our children correctly. Many parents are using their hard-earned money and health insurance to pay for one-to-one services, but they feel they should not have to pay for a service that should be provided for their children. In addition, any single parents do not even have this option as they are on their own.

The respite services in Kildare are stretched and it may take more than three years before a parent hears of a place available. Parents feel very restricted and believe their other children are missing out because the main focus is on the child with the additional needs, which may include routine or day-to-day supports and appointments. Many parents living with a child with an additional need will say how important routine is and how detrimental it can be on the child if it is not followed. For a parent to get respite services for the child, it would give them the greatly needed extra time to spend with their other children to make memories and build a relationship, taking away the "mum guilt" all parents feel when they have children with additional needs and siblings who get left a little bit behind.

It has also been brought to our attention a parent had a child in a local crèche and the child was accepted into the crèche knowing of the child's additional needs. However, after a few weeks, the crèche contacted the parent and said that the child's aggression and behaviour had gone out of control and they were unsure how to control and manage this behaviour. As the calls continued, the parent ended up removing the child from the crèche. She had to leave her job and stay at home with her child. Unfortunately, the system did not support her in any way because her partner was working and earning a decent wage. She was not entitled to any sort of support except for domiciliary care allowance. Her question is: if an individual is caring for a person, why is it being means tested?

It important to note that a family receiving disability allowance will not be entitled to the fuel allowance it there is someone working in the household. It is normally vital that the heating be on longer for our children's health as many of our children have additional health issues. At this time, it is extra hard for parents with the rising and already exorbitant price of fuel.

As our children turn into young adults it is an extremely stressful time as we are left in limbo about what is available and suitable for our children. We are only made aware of options for after-school services in the February of the year they are leaving school. It is even harder for the parents of children with a milder diagnosis as the options seem to be even more limited.

As a parent of child with special needs, I know there are inadequate services. We are told services are available, but when we look for them, we are either not answered, or else we are told that we missed the deadline.

A parent has been informed that there is no residential home available for her child. Another issue that parents have to face is what will happen to our children if something happens to us or when we are no longer able to care for them ourselves as we cannot expect their siblings to shoulder the responsibility and it is even more worrying for our single parents.

I again thank the members of the committee for this opportunity to speak on behalf of our children and their parents.