Younger sister (in her 30s), I am her primary guardian as parents are incapacitated themselves unfortunately.
She has complex diagnoses - autism, ADHD, dyspraxia, dyscalcula, mild/borderline learning disability (IQ 70), a lot of mental health stuff (on 3 psychotropics including mood stabilisers) but no concrete diagnosis. She has epilepsy (generalised since childhood), asthma and IBS. She was queried for a genetic syndrome, they think possibly fragile X via my father - but not sure.
She has never worked or earned a wage. She lives in supported living scheme with 24/7 on site carers, although overnight they are not in her flat but are just down one flight of stairs on a sleeping shift - no waking staff overnight.
I can’t see her coping with a job. She does a voluntary thing 2 hours a day,, and she has a 2 or 3 basic qualifications (ie about the level you’d expect of a 11 year old) and can to an extent do kitchen portering and handle a till, again to a very limited extent. But she can’t do any of this to a level she would get paid for. No one would employ her. Reading age is about 9, writing is far lower.
She has zero idea of value of money or impulse control. Socially she is years and years behind and can be very disinhibited. She struggles to keep relationships and doesn’t know what is and isn’t appropriate. She really needs someone with her all the time who knows her and can help her - if she gets upset or overwhelmed she can go into sabotage mode and has been sectioned on 136 a few times because she’s a danger to herself and others. A lot of self harm and violence towards others. She’s also doubly incontinent for psychological reasons and struggles to keep herself clean.
She will never not need care. She doesn’t see it this way and believes she is going to find herself a neurotypical girlfriend and get married and have a lovely house with pets.
Her benefits have changed recently and she’s been told she’s losing £400 per month as she’s not allowed ESA anymore; so will lose severe disability payment - also has to change to UC. She will possibly have enough to live off but only just - ie she will struggle to pay for utility bills, will have a very, very basic standard of living.
I don’t know if that also affects council tax and housing benefit but suspect it will. she also has to pay a chunk towards her care that goes up every year.
Our local council have just made the step of closing down vast majority of learning disability and elderly care services - 70% of all council employees have been let go, most sheltered housing, care homes and similar are gone, no care at home workers, and there are now no day services either. Sister no longer has a social worker, he’s been made redundant as he only worked part time. I don’t know anyone is going to take over but I doubt it - because she is borderline IQ and has some family around she is not classed as highly in need.
I work full time but I only just earn enough for my own bills despite being band 5 NHS, I can’t afford to pay for her too much as I wish I could. One parent is in a care home and exists on £45 per week for personal spends, the other wouldn’t and couldn’t for various reasons.
She is however, only getting the lower rates of PIP, which makes me think we should appeal? Their argument is she can walk, eat and wash but she can only do these things with a trained adult or often 2 adults.
I’ve talked her through what I can and have explained I am prepared to try and appeal. Is it worth trying? I can’t believe her benefits can just drop by that amount so quickly.
There doesn’t seem to be any real support or advice out there for anyone in this boat, it’s not what I expected at 34 to be trying to sort out! I’ve got a couple of relatives who are my rock at the moment but just trying to find independent opinions on what to do