Ms Karen O'Mahony:

A few years ago I sent an email describing what my organisation does to the then Minister who had responsibility for disability services. I received a return email that stated that my organisation and its work did not come within the remit of the Department, which is strange when our children are autistic and have a disability. The response has stuck in my head and I still have the email.

We have engaged with so many Senators and local Deputies, and have had huge support from the Minister of State, Deputy Rabbitte, and the Minister for Public Expenditure and Reform, Deputy McGrath, who constantly tries to support. There is a lot of goodwill but nothing has happened. Recently the Minister of State, Deputy Josepha Madigan, visited us and acknowledged our work. We constantly repeat our message that an entire pathway needs to exist for each child and everything needs to work together to provide enough support for the entire journey, which applies not just to school but to services as well. There must be a very clear pathway for each child and his or her future.

One constantly worries about the next step. For example, while these children attend national school one wonders whether placements will be found in secondary schools, and also what will happen after respite. There are families who have children in primary services that are planning as far as three years ahead for the onset of adult services. I know of a family who, a fortnight ago, had found a respite place for their young adult but the transport service was cancelled at the 11th hour. The mother in that family had lost her husband previously and she worked on the pathway for two and half years only for transport to be dropped at the last minute. There is a breakdown in communications which makes it seem like there are steel walls between Departments. I urge people to start talking together and allow for Department officials to work with families and organisations. I also want Departments to be receptive to our clearly telling them what works and does not work, and to be receptive to our clearly identifying what services must be put in place. Our experience is that there is a lot of goodwill but nothing has happened to provide long-term plans and an ability to implement stuff.

The summer provision has been a big issue this year. I have tried to engage on getting home tuition and summer provision for the past four years but have encountered one barrier after another. On inquiring one is bounced from one person to another and nobody can give a final answer as to what we need to do. We face that reality every day after we have gotten up in the morning perhaps without having slept that night and still having to do a whole day. We are not here because we want to be but because we need to be. We are here because we are all trying to fight for families who may not have a voice as strong as ours. We are also probably further along this journey than some of the newer families. They are only starting their journey and they are lucky to have people like us around them because when I started my journey there was nobody available. If what I have learned and experienced over the years can help somebody else then that is what I will do but we should not have to sit here with us all pleading and begging for help to be provided for our children when that is a simple human right. They are entitled to such just like everyone else.