Downs syndrome and autistic half-sister: my mother’s wishes

Hey all. I wonder if you good folks can help me with a dilemma.

I have a 11-year old half-sister. She was born with down’s syndrome (as my mother was in her 40s when my sister was born), and they suspected autism too, which has been since confirmed. This means, as you might imagine, that she’s very different from other kids and needs a lot of attention.

It means that to those who aren’t prepared for it, she’s a lot to handle. She doesn’t speak, but has a hell of a shouting voice, which she uses frequently. She still requires nappy changes. She’s quite destructive and noisy. She likes music, and is always trying to turn the sound up on the music player, throwing things around (including very heavy things, at other people), jumping on furniture, and pulling hair, glasses and other things. She’s a lot to handle in shops, as she has a habit of trying to grab everything on the stalls and hangers, and she has quite a reach, given her age.

It’s especially difficult as she doesn’t socialise, given her autism. As I said, she loves music, but she has no interest in interacting with others, and will pull hair and glasses and other things. She dislikes cuddling or most physical interaction.

Now, I love my little sister a lot, but I have to acknowledge I would find it near impossible to have her around constantly, and I am amazed my mother’s managed it so well. But this weekend she told me that she’s made a will stating that everything she and my stepdad have, on their death, will go to my sister – nothing for me. I’m completely okay with this.

What I wasn’t sure about, however, was her intention that if they were both to die, they want my sister to stay in the house by herself and be looked after by carers, instead of being taken to a dedicated home. I confess I don’t know much about how this all works, but from what I’ve been told, if she’s in the house alone, she’d not be looked after 24/7 and anything could happen to her – the carers might be neglectful, or might not show up at all. I live on the other side of London from them because of work, so it wouldn’t be possible for me to see her regularly.

Is my mum being sensible with this plan? Or am I being naive in thinking a ‘home’ (if that’s what it is called) is better than her being in her own house? Is there an alternative?

My mum seems pretty dead-set on this approach, and while not a religious man at all, I wouldn’t want the first thing I do upon her death to be overturning her wishes. Like I said, I have no interest in getting any of the will.

Sorry for the long post. TL;DR: is it better to have a down’s child in their own home or in a caring facility?

Thanks :slight_smile:

IANAL. My opinion is that she is incompetent, and therefore she cannot go unsupervised, consequently she cannot stay in the house for any amount of time without a caregiver.

Your mother is not being sensible.

Your mother is not being sensible, but she is thinking with her heart and not her head. She will not be there when these decisions will be made, either, and you may have to go against her wishes for the good of your sister.

She really just wants what is best for your sister, and if it ends up that you put your sister in a dedicated home, you will have to remember you are doing what is best for your sister.

Hell, wouldn’t your sister be happier in a home, cared for, instead of no one to take care of her?

And personally I think it’s wrong your parents aren’t giving you anything at all, not even a token gift. Sure, they’re not obligated to, but it seems so mean and stingy. Not even a couple grand to throw to you?

Anyway no way can she live by herself. Maybe she will exhibit more sense when she’s an adult. Maybe not. People without Down’s Syndrome make mistakes, burn their houses down, etc.

Going to move this over to IMHO.

Well, to be honest, my family have never had much money and my mum has even less since she and my dad divorced; I would imagine the money from what she has would go towards paying for my sister to have a good quality of life.

Have you asked your parents if they’ve gotten any advice from your sister’s doctors? I think that’s probably the first question I’d be asking. “Hey, Mom, how confident about this plan are her doctors? Do they think this has a chance of working out?”

As an 11yo, how many years will it be before she’s considered an adult so that she could live independently. If she were under (say?) 18yo, would you become her custodian? Then you would have to provide supervision even without her challenges.

Once she’s an adult, in the US some people cannot live alone because they’re not considered capable of maintaining themselves. Do you have any government agency that can answer that question about your sister? If she isn’t capable, then there will have to be a 24/7 care giver for her to stay in that house. But none of that is a consideration for many years.

I imagine that your mother wants her to be able to stay in order to not disrupt her life. Can you mother get her involved in any sort of routine activities outside of the house now, so that she is accustomed to other environments should something happen?

Best of luck to you and your family.

Is it possible your mum is hoping that you’ll step up and go “Don’t worry mum, I’ll look after sister when you’re gone” or something along those lines?

Seems to me that the right approach is to make the right noises to keep your mom happy for now. If and when she dies, the right thing to do then is whatever you honestly believe is best for your sister, regardless of your mom’s wishes.

There is such a thing as 24/7 in home care for developmentally disabled adults. I’m not sure how it works with children, but assuming nothing happens until your sister is of legal age what she’s suggesting is a workable arrangement. I worked as a caregiver for an agency that provided these kinds of services 20 years ago.

I very much doubt her DLA and Income Support, or the equivalent in what’s going to be coming in to replace them, would cover the cost of private home care support.
As a support worker (council, not private) working both out in the community, where service users have their own tenancy and receive support with daily visits for stuff like shopping, finance, tenancy and benefits etc, and working in a supported living unit for those service users on out scheme who need more support, such as the above plus help with cooking, domestics and personal care, I don’t think being in the house on her own would be a great idea.
There would be a lot of safeguarding issues, and most likely a best interests meeting would come to the conclusion that she needs greater support than would be possible to provide in her own home.

What would be looked at would possibly being somewhere where she has her own bedroom in a communal home type setting, think nursing home for LD people, with staff on hand 24/7.
Or a supported living unit, where she has her own flat and tenancy within a building where there is also a domiciliary care team based. They would help with her basic care, finances, etc and ‘social’ care would be provided through day services, or she would just be on her own in the flat all day.

There would be issues of capacity, safeguarding, practicality within a services budget (which are being tightened), whether or not to go private or council/NHS.

Shoot any questions you have this way, I’ll try my best to answer, but most of the in-depth workings of what goes on in the above mentioned I’m not greatly involved with.

If they dont have a lot of money how do they expect to pay for lifelong inhome care for their daughter? It ain’t cheap.

How much therapy and intervention has your sister received up to now? If your parents’ idea is just to keep her at home and live with her behaviour, they’re doing her a disservice. Both autistic and down syndrome individuals can learn and can live happier, more productive lives.

In any case, after your parents’ eventual death, you’ll have to do what’s best for your sister. Living by herself clearly isn’t it.


It’s premature right now for any of you to decide what your 11 year old sister will be capable of when she is 20 or 30 or however old she is when your mother passes (I assume your mother isn’t on death’s door for any particular reason) This is beyond hypothetical at this point, and the best thing for all of you would be to keep an open mind and make a commitment to her living as independently as possible when the time comes.

So much could happen between now and then. She may predecease your parents. Your parents may have to move when they become elderly and make different arrangements then. Your sister may calm down a lot and develop stronger skills. You may die. You may end up making more money than you ever dreamed possible and be able to contribute meaningful sums towards this plan. It’s so, so far away. Don’t borrow trouble.

His mum could die in a car crash tomorrow. Unlikely but possible. It’s always good to have an up-to-date will no matter how young and healthy you are, especially when there are kids involved. You just never know what can happen.

I can certainly understand the Mother hoping to keep her daughter in her own home. Losing her only primary caregiver will be a huge trauma, and keeping her at home at least for a year or so would help with transition. I do agree though that a group dynamic would probably be better for her in the long run. (If only because it provides witnesses and back-up in case the hired carers get burned out or ill or just grumpy.)

One strategy used in the US by middle class parents is to donate thier home to the county for use as a group home, with the caveat that their own child remain there for life or as long as medically possible. The county in turn makes it into a group home, and provides 24-7 staffing. They will usually begin with a 3-4 bedroom house and add a small sleeping area for the staff. They update showers and kitchens for safety and replace flooring with soft easy to clean linoleum, etc.

At any rate, I do think that you should make a real plan, with the counsel of the local health service and any cognizant authorities who would become involved in the event. Both you and your sister deserve to have a plan in place before the fact. If it turns out that your sister will have to go elsewhere, they should know where that will be and start visiting there and maybe volunteering so it’s not competlely strange to her.

Of course it’s sensible to have a will in place. It’s not sensible to start fretting about whether or not the girl could really live semi-independently. Clearly she can’t now–she’s 11–and whether or not she can at 20 or 30 is just impossible to predict now.

This sounds like a plan to me. Since it seems to OP truly does care about both his mother and sister, then putting the girl into a safe living situation would sound better.

I used to work with DD adults and would see this all the time–parents who had their kids’ best interests at heart but were not making sensible decisions.

The time to make transitions is when she reaches adulthood, not when a beloved parent dies. She should be receiving services that will enable her to live a full and rich life, wherever and with whomever that involves. I’d strongly suggest some state-provided care now (or whatever the equivalent where you live us) to teach her basic living skills and get her more involved.

That can be a big, difficult step for a parent to take, but everyone deserves a meaningful life, no matter how severe his or her disability.