Exile to afford free

The HSE has stated that due to the lack of funding and staffing in Stewarts Hospital in Dublin there will be no place for their highly-dependent teens in day care from September due to their age. The 11 teenagers currently receive physiotherapy, occupational therapy, Set up Business in Hong Kong education, and one-to-one training at the Stewarts Hospital’s day centre five days a week. This article is from a parent affected by the cuts who says they will not be able to cope if this is implemented. He writes:

I AM THE father of two girls both of whom have just reached the age of 18 and graduated from Stewarts Hospital in Dublin.

They both have a condition called Wolf-Hirschhorn Syndrome, a chromosomal abnormality resulting in profound intellectual and physical disability. While the girls are in themselves very happy children, they are totally dependent in every way on others to have their needs met.

They cannot eat or drink and have to be PEG fed. They cannot walk or talk or do anything for themselves, cannot dress themselves. They are incontinent and wear nappies all the time. They have a lot of problems with their joints and cannot weight bear. They both have Epilepsy. One has been seizure-free for a number of years, while my other daughter’s seizures have started up again.

We love our children
In telling you all this, I am not putting on the poor mouth and saying: “Pity me”. Rather, they are my children and my wife and I are happy to live with our responsibility to look after them and give them the best life possible formation of company.

They are the happiest two people I know and give us and many others so much joy and happiness. But we need help.

Providing for the girls takes an awful lot of energy and time and love. When the girls were in Stewarts School they benefitted so much from the energy of other people. They had social interactions, music, sensory experiences and much more. Their class of five or six pupils had and needed a one-to-one ratio of staff to look after them. This included a teacher, a nurse and special needs assistants (SNAs).

Time to do normal things
That time in school gave us time to do normal things like cook, wash, shop, hoover, clean, rest, work, cry and laugh – in other words, be normal – until the girls came home again.

I know the HSE has very little money to play around with and so I say thank you to them for the efforts they are making in trying to ensure all needs are met. I don’t envy the job they have to do.

Stewarts – following discussions with HSE – have offered us a part-time service which is certainly an improvement on no service Income Tax Hong Kong. However it is not of any great benefit because nothing changes for the other days, the complex needs do not disappear for those days. A car with no engine will take you nowhere.

The risk of not having an appropriately staffed and resourced programme for all these children is that parents who are willing but not always able to look after their children and young adults may find themselves totally unable to do so. This summer is giving us a taste of what it is like going into the future without proper services. For some it is very difficult and nearly impossible.

Further resources need to be made available to provide a service for our children. I’m asking this of the HSE as much for our children as for ourselves.