I second this. Here in the U.S. in many states either insurance or the government covers developmental and behavioral services. Your mother should ask your sister’s pediatrician about ABA services. Your sister may not be able to live an independent life, but putting a behavioral program into place and teaching her life skills will lighten the burden on her current caregivers and make it possible for her to have a less restrictive form of care as an adult.
If she’s 11 years old and still in nappies / diapers, then I can pretty well guarantee that she won’t ever live independently. My nephew, age 22, is autistic and has been out of diapers for many years, but won’t ever live independently.
The thought of having your sister living at home, with caregivers there, is a nice one but I agree with the OP that it’s not necessarily the best option.
While I don’t think you were talking about her being alone in the house ever (as some folks upthread seemed to think), your concerns over a caregiver not showing up, or whatever, are valid. Even when they are there, who’s going to make sure they treat her well, don’t abuse her, etc.? I’m guessing her communication skills are not such that she could reliably tell anyone that something bad had happened. I know you’ll provide what oversight you can, but you have your own life and can’t be there for her every minute.
In a “perfect world”, she’d live at home, with a full-time staff of caregivers, AND a family member right there in the house to make sure the carers do their jobs etc.
There are such things as group homes, which I think you were alluding to. This is what my brother and sister-in-law are planning for their son. Friends of ours have their son (early 20s, Downs / autistic) in a group home as well. In their case, I believe his disability payments (Medicare / Social Security) bear the brunt of the cost.
These are also far from perfect, but might have a level of oversight through whatever agencies run them, that your worries over a single carer abusing her might be eased. Obviously there are abuses at such places as well (my friend’s son was injured by either carelessness or deliberate malice on the part of a carer).
As far as being your sister’s guardian: I don’t know what all would be involved with that. Laws and procedures are going to be different in England vs. what we have here. To some extent, my friends surrendered some control over their son’s life in order for his placement to be handled using public money (they do not have the kind of cash it would take to pay for his care indefinitely).
And of course your mother and stepfather could name anyone they wanted as the girl’s guardian - doesn’t have to be you. Could be a trusted religious figure, a lawyer, a social worker, or someone else.
What kind of social services / schooling is your sister getting? Those people may have some thoughts on long-term options, may know of facilities you should investigate, etc. Heck, there might even be some residential schools that would be appropriate for her now. My friend’s son went to such a place, as they truly couldn’t manage him at home; he came home for a few days at the various holidays. And as much as they love their son, and missed him, the level of stress and tension in the house went down DRAMATICALLY because they no longer had to watch out for him all the time. Your sister actually sounds a bit like him (if perhaps lower-functioning - I don’t think toileting was an issue by age 11).
I agree with other posts here. Autism can be treated, from what I’ve learned. I know someone with a younger adult guy who has autism. When he was young he was completely mute, so his mom taught him sign language. Right now she’s checking into having him live at a residential place because he sometimes attacks her or acts out a lot. She doesn’t seem to want to, but sometimes it’s the best option.
I think investing more time and money into her education might be helpful. I don’t know a lot about Autism, but recently more and more people are emphasizing education and rehabilitation for people with the disorder. The main concern would be her safety. Good luck!
It’s not clear from the OP why the sister is still in diapers. Is it that she truly cannot be trained, or that a professional who has more experience training children with disabilities has not been consulted. It sounds like Mom has been doing this on her own, which leads me to believe that the latter is the case. I’ve worked with individuals with some pretty severe limitations on their functioning and they were all able to toilet train—not perfectly, 100% no accidents, mind you, but all able to get there.
I really hope the OP can convince his mom to look into services now. Everyone’s quality of life will improve.
When Mom goes doesn’t Dad then get to say what happens? And if Mom and Dad go together, don’t you then get to say?
If so, relax, these are your Mom’s wishes. Let her have them. When the time comes, you may well be of another opinion. You should be able then, to decide, if Mom’s wishes are workable. If they’re not, (and it sounds ridiculously unworkable, for anyone), it then falls to whomever has been assigned power, to decide what’s workable for everyone, and make that happen.