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New To This But Been Caring For Years - Carers UK Forum

New To This But Been Caring For Years

Share information, support and advice on all aspects of caring.
I don't know what I should say or if I'm on the right board. I find myself at a loss.I have been a carer for around 30 years. With a 6 month break.I have been through the education/health assault course twice with a 15 year gap at the starting gate. I sadly see no improvement as a user of this service as a parent/carer. The obstacles are more prevalent and the rules of engagement constantly change without you being included.I use this language because because I feel like I must compete or relearn the rules of the game just to qualify for the help and support I need for my child/children and myself to care. I am dealing with ADHD,AUTISM,ODD,ASPERGERS and Visual Impairment.I feel misunderstood,alone and occasionally discriminated against. I think I may need counselling.JC
Hi Jane, welcome to the forum. I really know what you mean. My son was brain damaged at birth. I feel as if I've spent his entire life battling. Latest part of the story is that I instructed a solicitor last week, and my son qualifies for legal aid.
Can I ask how old the person is you are caring for? Living at your home, or elsewhere?
15 years. Thanks for reply.
Someone who is 15 years old should be starting "Transition Planning". Has it started yet? Are you having most problems with Education, or Social Services?
My heart goes out to you with regards your son and your predicament. Solicitors are costly. I hope you are getting the support deservedly needed. I feel disheartened by your plight, mine and others. What happened to the society I grew up in. Where did care go? JC
Education. Also question healthcare. What it says in legislation doesn't happen. When you try to question it your told Trust doesn't use NAS guidelines. Just been sent a letter from school changing Action and Action Plus to Code K?. No explanation. Wont be seeing VI lady every term anymore. No funding. Social services never been in touch. Did ask them for help before. Came to my home. Nice home, clean children, well fed etc. Told at that time if Autism or Aspergers was involved they would automatically be there. Diagnosed after. No one here. Eldest 32. Not now at home. Diagnosed ADHD/OBD as child, diagnosed Classic Aspergers 21 years.Not misdiagnosed but one diagnosis missed. The Aspergers.Im probably saying too much.JC
Information is Power. Ignorance of legislation or rights is definitely used against you.Thankyou for reply. JC
It all boils down to information and power. I have always resented the way my life is controlled by a local authority, as I have a son with special needs. As a mature student, I studied for a degree in Business Studies, which involved a lot of Law. That taught me where to find information, and how to use it. The local LA dread my contact with them, because I often know the relevant law more than they do. I read their policies, and ask why it isn't being applied.
When I had an enormous problem with education, I used IPSEA, Independent Panel for Special Education Advice, or similar. They were wonderful, and arranged for my son to have a 1:1 assistant for a year to give the LA time to find suitable provision for my son.
Now, with a problem over my son's care, I'm using a solicitor funded by Legal Aid.
An LA will try and not tell you what you are entitled to. To the best of my knowledge, I have never ever asked anyone to do something they shouldn't be doing anyhow.
That is interesting. I am worn out. IPSEA helped me with my eldest son. I think I have communication issues only made worse as those I deal with are aware and use it. I'm scared my child will slip through a safety net. My eldest did and the family is left with the fall out. I am not perfect but I know I have fought hard. Sometimes feel traumatised by the process. Thankyou for response.JC
Can't see anything wrong with your communication here!!

However, many staff redundancies in Social Services in Hampshire where I live seems to lead to huge communication problems amongst their own staff, everyone trying to pass a job onto anyone else they can, no one doing anything properly, and so we, the clients, have no hope unless we get tough. I don't want to be tough at all, I just want to sit in front of my sewing machine and make clothes for holidays!!!