Mick Wallace (Wexford, Independent)

It was good to hear the Minister for Health admit that the application and assessment process leaves too much to be desired and that change will have to happen. It is shocking to think that 52% of appeals are successful. One would wonder how in God's name that can be the case. The Minister said there is limited funding available, and we know that. He said the money must go to those who need it most. I would like to think that it should go to those who need it, not just those who need it most, and that everyone who needs it would get it. We know money is scarce but decisions are made on a daily basis. The Government spends money every day and it makes choices as to how it spends it.

I have heard many stories from people caught in this situation and I do not know how they cope. The level of self-sacrifice involved is mind-boggling. Most of the points on this issue have been made by different speakers. My time will best be used by putting some of the experiences of these heroic people on the record, as others have also done.

A girl called Linda from Wexford wrote to me. She is currently appealing the Department's decisions to refuse her domiciliary care allowance. She wrote:

I gave up my full-time job last August to be at home to care and help my little boy who is four years old and who has only started becoming verbal in the last six months. He is on a waiting list for Occupational Therapy .. and Speech and Language Therapy ... since last March and it will be at least another two years before he will be seen. It is €110 per month for private ... [speech and language therapy] and the nearest SLT qualified [to care for] ... Autism Spectrum Disorder children to Wexford is in Dublin. It is heart-breaking that ...[the Government] is making us beg to get and then keep an allowance of €309 per month to help us provide services that the State isn't providing to our special needs children.

Two parents, Rod and Jane, who have two children with autism outlined to me the daily realities of protecting and supporting their two boys. They wrote:

Like many parents of special needs children, we are in a situation that we neither asked for, or bargained for. An 18 hour day is typical for us and this applies 365 days per year. The children can present with extreme behaviours or engage in acts that are very dangerous which could result in injury or worse.

They also wrote:

We deal with situations like this every day and the DCA at least acts as an acknowledgement from the State for the work we do and the work we have no choice but to devote the rest of our lives to. This we do out of love for our children and all we ask is for the continuation of the supports we receive to help us to facilitate this.

Parents of special needs kids are currently under attack from this Government on two fronts. Not only is DCA under review for many families, but SNA support in our schools has been and will be cut again. We find it astounding that any Government in this day and age could even contemplate victimising one of the most vulnerable sectors in society in order to save money and enhance their reputation abroad at the expense of its own young citizens.

This situation is the cause of extreme concern for parents who are already under immeasurable strain. DCA is well earned by those who qualify for it and we ask the Government this; are our children not worth 309 Euro per month, or based on a typical 18 hour day, 55 cents an hour!

They further wrote that they challenge autism on a daily basis in their home and they support their boys in every way they can in order for them to eventually become the best that they can be. They wrote that for the majority of the time they do not even think of the boys in terms of their disability; to them they are simply Evan and Daniel who, far from being the stereotypical socially withdrawn children, are affectionate and interactive and they and their big sister, Ciara, are the centre of their world, but their boys are a labour of love and they work hard every day for their very survival as a family.

They also wrote that their lives are not like other people's lives, they are among the families who live in semi-isolation, spending endless hours with children who need their constant care and attention. They further wrote that they ask only that they be left alone to do the job that nobody imagines that they will have to do. They wrote that they are already exhausted from just getting through the day, yet they find themselves constantly having to find the energy to fight in order to maintain the support which they worked so hard to receive.

They also wrote that the ongoing reviews on DCA and SNA support for their children represent an attack on their family and families like theirs all over the country. They further wrote they had no part to play in the economic crisis. They wrote that the Celtic tiger never knocked on their door. They also wrote that they worked hard then as they do now and they only ask that the Government maintain their rights and entitlements. They further wrote that they are now at their most vulnerable and any further cuts to them in terms of social protection or education might just be too much.

See this speech in context