This is ridiculous, but I can't help thinking about the future already.

[mumgoingcrazy]

DD2 is only 4.10yrs, and I have no idea if she will ever be able to live independantly. There are some days where I think yes maybe she might, and others where I think she will definately need some kind of assisted living.

My question really is, if she is unable to live independantly (which is something I do need to consider), should I start saving now for some sort of residential care? How does it work? Who oversees the care of adults with disabilities?

Or in other words, is this something I need to plan for now?

It is early days I know, but wouldn't want to be 20 years down the line and not have planned for this. It's curiosity at the moment I guess.

TIA
x

i don't think you're mad to be thinking of this already :)

i think social services will be the ones who deal with stuff even when the children have grown up, the same way that they help with care of the elderly. Maybe you will need to pay a bit yourseelf but probably social services and maybe houing benefit?

I used to work in a care home but I am not sure how the funding works. I am almost certain it wasn't up to their families to pay though. We never dealt with any funding issues with the families.

The service users were referred to the care home by social workers who had decided it would be a good placement for them. Often different houses have different focus, the one I worked in for example took clients with challenging behaviour.

Some houses just have bedrooms (newer ones have en suite bedrooms) and some houses are split up in to flats. Your daughters funding level and individual needs will decide what she qualifies for.

I know there have been negative stories in the news about some people working in care but in the care homes I worked at the staff really did care. You do get attached to the people you look after. It isn't well paid work and there are easier jobs you can do for the same wages so most people do care work because they want to look after people.

I am no longer able to do care work (diagnosed with epilepsy) but I really miss it and I miss all the service users I worked with. It always makes my day when I catch up with one of them.

I hope that is reassuring!

What a lovely message lilicat. I am sure the OP will really appreciate you taking the time to post.

Not mad at all. If she does turn out quite independent, perhaps you could put the money you've saved toward a studio flat for her nearby.

I worked in a couple of care homes during holidays as a student. They were for adults with learning (and varying physical disabilites). Basically, they were placed in a home with two or three other adults with a similar level of disability, and carers - more or less depending on need, but we always worked on a minimum ratio of 1 carer to 2 service users ( and this was only at night, there were more in the day time). The homes were just normal houses, usually bungalows for obvious reasons.

It was a nice enviroment - the carers all knew the residents really well, I was temporary , but it wasn't common to take on temp staff. Some had moved into the home at 18 after leaving their parents house, so it was a real step towards independence for them. They were really busy too - trips out every day to classes, day centres, swimming, or just out for lunch.

I really enjoyed that job!

Wow, thank you all so much. I hadn't expected this response at all. I really thought I was being ridiculous.

Lillicat and Fruitsalad, I can't tell you how lovely it is to hear your positive stories about care homes. To know that people do really care means a lot. You are right there is a lot of bad press in the media and unfortunately that is what sticks. I am absolutely petrified about what will happen to DD2 when DH and I are no longer around.

Thanks everyone else for not thinking I'm mad, great idea silkstockings to save for her anyway and put it towards a flat if she is independant. Hopefully DD1 will be somewhere nearly by to check in on her too (not that I expect that, but it'd be nice )

not sure what your dd sn's are but Mencap do have advisors & (I think) general advice on their website..maybe worth a look.

No harm in saving for anything but do be careful how you designate this money. If you amass a large sum in your DD's name, and it turns out that she has little chance of independence, her savings may stop her from getting things such as benefits that she is entitled to once she turns 18. (Know I would get flamed on main boards for saying that but hopefully, those on here will understand)
I would seek advice from someone like Mencap with regards to the best way to save. Also regarding Wills, if you haven't already made one. We were advised not to leave anything directly to DD in our will, as the state would take the lot towards her care if we die before her. There are specific ways of leaving money in trust so that your hard earned cash cannot be got at by the state (normally the reserve of the rich - but needs to be considered by those with disabled children too).
Sorry if that all sounds mercenary, but we have had so little off the state over the years, as have others in similar situations, that I don't want to see people lose their hard earned cash to the state, just because they didn't get correct advice.

I am in my mid forties and have an older brother who lives in a care home. He lived at home till his early twenties. He tried independent / assisted living but I think this can often fail.

My mum researched residential care in his early twenties and found the place she wanted him to go and then fought to get him there. It took a year or so I think to get him in there -

In his house - which is a lovely big house with a big garden, they all have their own rooms. They have a rota for cooking communal meals. There is always a student or nurse on site. They have art groups, trips to cinema, they garden etc etc.

We think his care home is fab. It means my mum can have her own life too rather than being his carer and puts the responsibility for caring for him and providing the correct services firmly in the authorities hands.

I think researching rights and benefit entitlement has been really important. At many times they have tried to take on my mum and change his care provision - but my mum is shit hot about his rights and the legal responsibilities and has threatened legal action. Its a real shame this has to happen but now the authority knows that they can't fob her off.

Residential care, when you get the right fit, can be absolutely lovely. Its been amazing for our family. Its not perfect - but nothing is?

I second the idea of being very careful about leaving lumps sums of money. The authorities will try to find ways of not supporting your child, rather than the other way around.

You have to leave money in a discretionary trust. It's fairly easy to set up but you do need good legal advice. Our mutual friend at EWI has done it for her DS. Scampps also had a lawyer in to do a talk on it a while ago, I think there is some info on their website, if not I may still have the paperwork.

It's worth looking at power of attorney type stuff as well, I don't think it's called exactly that in this case but it's similar.

Hairy Not sure that Power of Attorney is appropriate if the person does not have Mental Capacity. I think what happens is that you apply to the Public Guardianship office to be officially appointed to manage the affairs of the person who cannot manage their own. Not sure if it is necessary if the person's only income is benefits though, as the DWP will appoint the designated person to receive and manage benefit payments.

Also be careful of any well-meaning relatives who may decide to leave legacies to your disabled DC. A friend of mine got caught out, when her in-laws died and had left equal sums to all their grandchildren, including their disabled grandson. It has caused no end of complications about the managing of his money(he has turned 18) , and he also lost some of his benefits.

Mumgoingcrazy, I think about my DS's future all of the time and he is only 9. I work within the care industry and would second that there is stacks of good practice and highly motivated staff who only want the best for the people they care for but it's no fun to report that in the press.

Bigbluebus has given you good info so far. All I would add, is that the fashion for how local authorities want to care for people with disabilities changes over time. Once care homes were the style of choice, now it is supported living, who knows what it will be in another 10 years. Similarly the way social care is funded alters endlessly but I would definitely look at your Will and consider Trust arrangements for any funds that your DC might be accruing already.

Thank you so much everybody, there is stacks of information here I hadn't even considered.

daytoday and wannabespook it's really good to hear positive stories about care homes, it definately restores my faith in humanity!

slacklucy and bigbluebus, I will check out mencap for advice. We do have a will and everything has been left to the DD's so I clearly need to change this and seek advice. When we made the will we didn't know DD2 had any difficulties so obviously I need to change this.

Hairymaclary I'm wondering which mutual friend it is?? I'll check out the scampps website too. How are things going for you, and most importantly your DS1?? pm me if you prefer x

Am on iPod so can't pm. I did wonder if you would know which one! the one with 3 ds's, middle one with SN, eldest at school, youngest a baby.

DS is doing well, nights still a bit tricky, v tired but struggling to sleep. I'm blogging about it all here. www.brookedup.tumblr.com

Thanks for that, I'm seeing her on Monday actually so will talk to her then.

I'll follow your blog, glad he is doing well though xx

I started worrying about the future the moment my DS was found to be disabled at 2 days old, so don't think you are alone. Sometimes I didn't want the future to exist.

Now the future has arrived for us as DS is 16. It is scary but we have to face it head on. The positive stories of care on here have really cheered me up - thank you so much for sharing them and giving me hope

I panic about this stuff with DS2. DS1 keeps telling me that DS2 can move in with him and he will help DS2 on and off the loo. At the moment they are 5 and 4 so I think that idea will be less attractive when they are older. I think he will be able to live fairly independantly in an adapted bungalow but not sure about working and would probably need help with housework etc.

I dont think you are being ridiculous - I worry about DS's future all the time too. Its nice to read a positive thread like this.

We save for DS's future, and I agree with some of the posters on here. The savings account is in my name, rather than a trustee account.

I now don't feel so ridiculous, that's the great thing about mn, everyone goes through similar things.

elliejjiny my DD1 also says she will look after DD2 when they are older, as much as I would love this and give me total peace of mind it would mean her giving up her life and possibly choosing a different path which I would hate to end up in resentment. Very hard, heart says yes, but head says no!

Definately time to change the account names and will I think!!

I am a grown up sibling of a mentally disabled older child.

We grow up just fine. My brother, as I've mentioned, lives in a care home which is balanced and good for his needs. He stays with mum often at weekends. We've taken him on holiday with us, with my mum.

He comes over for a video and curry night, if he fancies it, every few weeks during the week and often at weekends. He is a doting Uncle and my kids think he's the bees knees.

My mum never puts any pressure on me to check on him. She leaves us to get on with things. I think she has done really well to not make me feel responsible for him until I need to be, which will be when she can't I guess. I'm not perfect, I'm just a sister. Sometimes I've prob neglected him. Especially when I was younger. But life is a cycle and now I've settled and have children we see so much of him.

I wanted to post something happy. Some of the funniest times we have ever had have been with gentle giant big brother.

It balances out and outweighs all those awful times as a child, when he was violent or people teased us about him. Or my mum cried about what would happen.

We're all really happy place 40 years down the line . . .

daytoday what a lovely post. It sounds like your mum has done really well and found a good balance as it'd be so easy for me to encourage DD1 to care for DD2 especially as she tells me this all the time. I almost need to discourage her to enable her to make the choices she wants rather than make choices that fit in with DD2 because she thinks she should.

Glad to hear you're all in a good place now, and it's worked out. This thread has definately cheered me up and put my mind at rest.

Time to talk to DH about it now, he has no idea I've even been thinking about this

daytoday, what a wonderful post. Thank you for sharing your positive experiences with us. It helps so much when I am paralysed with fear x

I've checked out the mencap website and they have loads of events/seminars all over the country on "planning for the future events" and a solicitor experienced in finance and wills for people with LD will be at each one.

www.mencap.org.uk/what-we-do/our-services/wills-and-trusts/planning-future-events

DH and I have booked a place at one. Thank you all, I feel like I'm being proactive about securing DD2's future now.

As a sibling, let your daughter say what she wants - listen to her offers of help, she probably needs to say them. Just listen and tell how wonderful she is.

Also, be careful not to push her out of the experience too. There was a bit of damage in my relationship with mum as sometimes I felt pushed out, away. We've tried to address this. I understand why - she wanted me out living my life. But sometimes I didn't want to be. Its a tricky balance. But just stay close and keep listening to each other.