Our child had a Record of Need (RON) and hence his transition was started at the age of 14. Meaning that, the annual meeting at the end of the school year involved someone from JET (Jersey Employment Trust) in addition to teachers and support staff. We were urged to think about things that he would like to do when he leaves secondary school – He still wanted to be a footballer or a racing driver….. The next step was project trident. He loved his time at Durrell Zoo and did well with extra support from his key worker, but there was no option for him to stay and still, he was unsure what he would like to do. After much debate he decided to go to Highlands and start a course in Health and Social Care. However, Highlands is no longer school. There is no automatic support for students and you have to ask for the help you think your child needs, without any guarantee they will receive it. There is limited support availability hence those who needs it most will get preferred treatment.
Leaving school meant going to Social Security and registering for further education. However, the lady at customer care would not talk to me, she only wanted to talk to him. He did not understand her questions and could not answer them. Therefore, I was answering her questions, which she tried her hardest to ignore as he was 16 and therefore should make his own decisions and talk for himself. In the end I resorted to giving my son the answers he would then repeat to her. What should have taken five minutes took half an hour and left everyone exhausted. Later on and only by coincidence I found out that there is a form which can be filled in stating that my child needs support and accepts his parent to answer questions for him.
The next big step was turning 18. By this time, he had left his Highlands’ course and gone to try a year at Skills Jersey. Like everywhere else, support was limited and people did not really understand his needs. The idea behind Skills Jersey is good, but again there is no specialist support if your young adult has special needs, in particular those not immediately obvious. In addition, we were now discharged from the Paedeatric Care at the Hospital and referred to our GP. You may think this is not a problem, at 18? The Paediatrician knew what was needed for my son and had done all the referrals, even suggesting some of them. In addition, prescriptions were easy to come by as everything was in his extensive hospital notes. He never had to go to the GP, unless it was for the usual illnesses and my first encounter with his future care was that the practice was not aware of my son’s needs. I had a long discussion about the fact that he was unable to discuss anything on the telephone, but again, the GP is bound by the law and from 16 onwards the parent is not to be involved. We had to make an appointment and ask for certain information to be added to his records including that his parent is allowed to support him.
Transition from childhood into adulthood can be tricky, but for some parents and carers there is an added level of pressure. As long as your child goes to school there is a routine and everyone knows what is expected. However, once school ends decisions have to be made about the future. What are the options? Are they capable to go away and live by themselves? Do they need to stay but are able to access further education at Highlands? Are they able to look after themselves and earn their own money or will they always need to be cared for? What type of care is ideal and what is available in Jersey? Where do I turn to for help?
The Parent Carer Forum is here to help parents of children with special educational needs and disabilities. If you have similar experiences or are just at the start of your journey, then please get in touch. Our committee members are keen to make your story heard to allow parents and carers an easier navigation through these challenging times. We are hoping to raise awareness of the various needs, and thus to make family life easier to enjoy.
