Hi to everyone.
New to carers uk.
Hope I’m welcome with my carers concerns…lol
I do worry often that because my children’s disabilities are mental rather than physical, that I won’t be accepted in places like this?
I have 5 children aged 20, 19, 15, 14 and 13.
4 are diagnosed with varies Autistic diagnoses as well as many other diagnoses that are associated with Autism. The child undiagnosed is awaiting his assessment for ADHD and Autism.
All still live at home and all but the 14 yr old are still in education.
The 14 yr old is at home with me 24/7 as SEN education can not find a placement that would suit his Autistic needs. He had been home on and off since 2013.
I care for them all 24/7, from the usual mum things, such as cooking, cleaning etc but also deal with all the older ones financials, paperwork, doctors etc.
All 5 need support, either physically or verbally on hygiene matters, food issues, clothing, travelling, financial, medical, mentally and emotionally.
I do not have any outside family support on either side.
My husband, dad to all 5, has is own issues such as PTSD, and I am his only form of support as well.
I have no rest bite.
With regards to benefits, I am on carers allowance, but as the eldest are now classed as an adult for the 20 yr old, I have lost all benefits for her as the local councils expect her to be self dependant and in April when my 19 yr old turns 20 I will lose even more.
I find it unfair that u are only allowed to claim carers allowance for 1 person.
I’m sure many on here will disagree but I am caring for 2 adults and 3 children. I now get No financial support for looking after my eldest! And as already said the same will be the case come April for the other adult.
I can not work, dispite having many qualifications in varies areas, due to having to be at home for the 14 yr old but also because the others need me, on average, 4/5 days a week, with an issue at school/college, that requires me to except phone calls throughout the day and even visit schools/colleges to resolve issues raised.
I believe that there needs to be a massive shake up across the board for understanding Autism’s needs when they turn into adults.
Very little help and support is out there for adults with Autism and financially they are expected to jump through hoops to prove they are incapable of working due to their disabilities.
How are they meant to try and live a normal life if there’s no support there, emotionally or financially?
My apologises if this annoys anyone, that may feel, as a mum of Autistic children, that I’m not really a Carer or not in such a hardship as others with different disabilities.
I really just wanted to rant.
It’s hard having no support and no rest bite.
Sorry once again.