Hi
I have searched and searched not just now but over the years and rang departments etc to find out if there was any small extra allowance for my son who is now 19.
He had a few brain tumours on his pituitary gland and as a result has been on medication for 9 years now and will be for the rest of his life. He is obese due to the nature of these tumours and the medication and also would have some learning difficulties which he never had and also as he loves drawing and would have loved to work with something arty is now colour blind.
Now he is fine and we live day to day and is care is primarly management, taking meds, hospital visits a few times a year with blood tests, annual scans. It is not only the physical effects from this but other things. He has no friends and is very isolated except with either much older people or younger people, I think he feels he is not judged by these different groups of people. He is not alone though. he completed a questionnaire on his condition and the questions were definitely compiled for people who live similar lives to him.
He had shunts put in because of hydrocephelus and they were replaced 2 years later.
I was never told about domiciliary allowance.
I am a single parent and his care is down to me. Though he trots of to his course at the VEC he is finding it extremely difficult as instruction and short term memory are a huge problem. He also gets very tired due to the condition and his meds and I sometimes feel he will never be able for a full time job and yet I do not want to encourage social welfare benefits for him at this young age as he is capable of doing a good 20 - 25 hours a week comfortably I feel.
I work part time and a have a social welfare payment which is reduced due to my working , however I do not have a medical card as I am slightly over the limit, though I am told I could get a gp one, it is the regular one that is more important as I pay 100 per month for his XXXXXXXXXXXXXXXXXXXX and yet we very rarely need the doctor.
Because of his size I have to search high and low for clothes, he is not fussy and never looks for designer items but it is hard to get something that reflects his age and his size in regular shops so in general it costs a lot more. His feet are size 15 wide fitting so again regular shops do not sell these.
Does anyone know of any extra help he could get or where I can direct him for the future.
Thanks