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What happens to child with disabled parent if carer parent dies? And how best to plan for it?

36 replies

Howtohelpmyfriend · 26/10/2023 13:09

Name changed because this is outing, get the long time MNer (cutted up pear, CentreParcs bumsex etc).

Posting on behalf of my friend ("Friend") who is in the middle of a serious health scare.Sorry it's long and complicated.

She is carer for her wife ("Wife") who has MS which affects her physically but also cognitively/executive function which is a relatively rare presentation. She also has various other medical issues that make her very unwell most of the time.

Wife is able to just about hold down a part time job but it's always touch and go. She has regular treatment and has had to quit jobs/stop work at points when her health is poorer. MS is relapsing-remitting but she's never been "back to normal" since her diagnosis. It's more "bad or worse" than "ill or well".

Friend works full time and is obviously the main earner and the main carer for their 2yo child ("Child"). Friend was birth parent to Child, but both Friend and Wife have legal parental responsibility.

Basically their home set up works only because Friend is able to hold everything together.

Wife does take care of the Child and they adore each other but only when Friend is around to at least indirectly supervise. The maximum she does is short walks/nursery pickup/ very short spells at home alone with her and only on her best days. On her bad days she is akin to an adult with a learning disability and is not safe alone with the Child.

Friend is now undergoing tests for something we all desperately hope is benign but may be very serious.

Until now the assumption has been that Friend is the well parent that holds it all together. This has suddenly put my friend into the awful position of having to think about what happens to her Child in a worst case scenario.

In the short term if she were ill/being treated friends and family can pitch in and help out. But if Friend were to die - how the hell does she make provision for her Child? And her Wife?

I said I'd help her do some research and wondered whether wise mumsnetters have any experience/ observations

Step 1 is obviously make a Will, which she will do - but what to put in it? If she dies, Wife will have parental responsibility so the default will be she has custody. No reason for anyone to get involved or think otherwise.

The quandry is - she won't be safe to look after the child alone. I assume social services would get involved when it gets to crisis point but obviously nobody wants it to get to that point. Is there any sort of pre -emptive assessment that social services could do in that case so that they know to swing into action if Friend died?

One option would be for Friend to leave custody of Child to get own brother or sister or even knew of her friends. But 1) could she even legally do that given wife has Parental Responsibility? 2) Is there a legal way that could be done whilst legally requiring they retaining some sort of right of visitation/access.

The ideal scenario is probably that Child stays with Wife, but in some sort of supported way but I don't know if that exists. Certainly the bond between Child and Wife is very strong, and it would be awful for Child if one mum died and then they were taken away from other Mum. Friend definitely feels Child would need wife if Friend died - but wouldn't be safe in her sole care.

Option of Wife and Child moving in with extended family would seem ideal but unlikely to work but maybe it's worth exploring. Wife has elderly parents but they are useless practically and don't help at all. Maybe it's an option but I'm not sure it's one that would give Friend much comfort. Friend's family are great but siblings live overseas and parents are also elderly and frail with health concerns.

What does she need to / is she able to do to plan for the worst? Having it sorted would give her peace I think. And this scare has made her realise it's something she needs to plan for proactively even if this current scare turns out not to be the worst. As you can imagine it's horrifying enough waiting for a diagnosis for something like this without "what the hell will happen to my child" running round your head as well.

I was wondering whether she can entrust one of us to notify social services and start a process if the worst were to happen. Should that be something she puts in a will? But even then there would be a period whilst Child was alone with Wife and not safe whilst that played out (and both grieving). Would SS then remove Child to foster care? Is there anything she can pre-emptively to avoid this? Specify a backup carer in case of SS removing the child so she doesn't go into the foster care system? Is that even necessary in a will, or would SS do that anyway?

Lots of think about but any advice or perspectives welcome. I've googled a bit but it's all quite genetic and this is quite a specific/difficult circumstance.

OP posts:
HowcanIhelp123 · 26/10/2023 13:51

Hard and unique set of circumstances. Hopefully the tests come back fine but if not maybe your friend should refer herself to social services? Then maybe everyone can work together on a plan and start working towards that plan? Write the will etc based on the plan.

Your friend will also need help if they deteriorate, and will likely need more rest so you want help early.

TwigTheWonderKid · 26/10/2023 14:10

Does your friend have life insurance? Enough to pay for a nanny?

TwigTheWonderKid · 26/10/2023 14:12

I think social services would only need to get involved if this can't be resolved by the parents?

Presumably the disabled wife understands that she cannot be sole cater for their child?

Icedlatteplease · 26/10/2023 14:18

Both women need to have wills that put their possessions into trust. You need a solicitor experienced in this

It is very unlikely social services will want to remove a child into care. They are likely to look first to family and friends to see what support can provided that way.

There is an element of the harder SS can lean on family and friends the less they actually have to provide.

TippledPink · 26/10/2023 14:22

You can refer the adult to adult social care and she may get support to meet her childcare responsibilities- it's a domain under the care act. It can get a bit grey in this area as it is part of the care act, but also could be considered under the children's act, so both adults and children's SS may need to work together to meet the need.

dontbenastyhaveapasty · 26/10/2023 14:32

If money allows, planning for a permanent live-in nanny seems the most obvious solution.

I don’t think it would be sensible to assume social services will provide - sadly, even if they wanted to, in my experience they can’t get the staff and don’t have the money to even meet their basic statutory duties.

if Friend has a decent workplace pension, it is likely to provide fairly generously in terms of death in service benefits, so it might be possible?

HermioneWeasley · 26/10/2023 14:44

Large life assurance sufficient to pay for a nanny until the child is old enough seems the sensible way forward. If she doesn’t already have this, it might be expensive or impossible if she’s undergoing tests. If she doesn’t and the tests come back clear she needs to sort some as a priority. She might have some through work but unlikely to be enough (3-4x salary is typical)

EliflurtleAndTheInfiniteMadness · 26/10/2023 15:00

I have a similar condition and although not to the same extent, my condition causes my cognitive function to decline significantly when I've done too much. Sometimes I can barley string a sentence together. I'm wondering if it's possible that not working might reduce some of the effects on your friends wifes' cognitive ability and could be a faceat of your friends contingency planning. Obviously I don't know any of the details, please ignore if not helpful, but I wanted to post this just in case. It sounds like a really tough situation, I wish them all the best with it.

Icedlatteplease · 26/10/2023 15:03

dontbenastyhaveapasty · 26/10/2023 14:32

If money allows, planning for a permanent live-in nanny seems the most obvious solution.

I don’t think it would be sensible to assume social services will provide - sadly, even if they wanted to, in my experience they can’t get the staff and don’t have the money to even meet their basic statutory duties.

if Friend has a decent workplace pension, it is likely to provide fairly generously in terms of death in service benefits, so it might be possible?

If they are not meeting their statutory duties, this needs to be dealt with in a legal setting

dontbenastyhaveapasty · 26/10/2023 15:16

Icedlatteplease · 26/10/2023 15:03

If they are not meeting their statutory duties, this needs to be dealt with in a legal setting

Yes, theoretically that is true. But in the real world, where over a decade of savage central government cuts mean there simply isn’t the money - or the staff - to meet needs, taking local authorities to court over it would be wholly pointless.

There are countless cases all over England where adult social care simply can’t provide the carers people need. Surely you know that?

Its getting to be a bit like the state of NHS dentistry in some places: in theory, one has a right to NHS treatment. In reality: unless you can pay, there is nothing.

(for the love of God, everyone, please don’t vote conservative at the next election! I think people outside public services don’t actually have any idea how hollowed out / non-existent services are compared to 15 years ago).

Howtohelpmyfriend · 26/10/2023 15:46

Part of the problem is I suspect she may not really. So the conversations that need to be had will be really difficult. Her impairment presents not unlike dementia in that she's confused and doesn't really "get" things but she can also lapse in and out of it. But lots of the time she just doesn't really understand what's going on around her. So perhaps Friend needs to pick her moment.

For example - Friend has been having various tests and appointments, obviously. Wife is really sweet and loving and sympathetic, like "oh, you're feeling poorly, you need a hug" but she hasn't really been able to process the implications - "oh, it might be serious what will we do?" - She just doesn't really get it. Isn't capable of processing it.

Friend probably has a decent workplace pension so live in help may be an option as some have suggested, it's worth looking into.

I wondered about suggesting Friend initiate a pre-emptive conversation with social services but as the poster above says - they're so stretched I don't know if they have the resources to have the luxury of such things ..

OP posts:
Howtohelpmyfriend · 26/10/2023 15:52

Is there such a facility as a residential care home for disabled adults with children? That would be the sort of thing needed if Child were to be supported to remain with Wife I think. But I suspect it doesn't exist. Certainly not publicly funded (will not be voting Tory ...)

OP posts:
MoltenLasagne · 26/10/2023 15:54

Honestly, your friend needs to have this conversation with her wife as a priority. No matter what gets put in place, if her wife contests it, then it's going to take a very long time to unwind. And imagine the sense of betrayal - no matter how well meaning, it would be the final message from your friend to her wife.

Icedlatteplease · 26/10/2023 15:57

dontbenastyhaveapasty · 26/10/2023 15:16

Yes, theoretically that is true. But in the real world, where over a decade of savage central government cuts mean there simply isn’t the money - or the staff - to meet needs, taking local authorities to court over it would be wholly pointless.

There are countless cases all over England where adult social care simply can’t provide the carers people need. Surely you know that?

Its getting to be a bit like the state of NHS dentistry in some places: in theory, one has a right to NHS treatment. In reality: unless you can pay, there is nothing.

(for the love of God, everyone, please don’t vote conservative at the next election! I think people outside public services don’t actually have any idea how hollowed out / non-existent services are compared to 15 years ago).

Services don't get better by encouraging people not to pursue their legal rights. social services frequently bully people into accepting substandard care. It's not OK.

I ended up being in the position of taking social services to court over care. We won before it even got there and the care provided was significantly better as a result.

More people need to get encouraged to pursue their legal rights. Its the only way to get change.

Icedlatteplease · 26/10/2023 16:01

Howtohelpmyfriend · 26/10/2023 15:52

Is there such a facility as a residential care home for disabled adults with children? That would be the sort of thing needed if Child were to be supported to remain with Wife I think. But I suspect it doesn't exist. Certainly not publicly funded (will not be voting Tory ...)

I think there are, but in all honesty that might not be the best result. The best result might be seeing what support can't be provided to keep the family together.

But that might be very hard if the friends wife isn't entirely on board/isn't realistic about tge extent of the difficulties

MyHornCanPierceTheSky · 26/10/2023 16:01

I feel horrible asking this, and huge apologies if have missed it, but has df wife had recent diagnosis/deterioration since they got pregnant? Absolutely not saying a person who had a disability shouldn't be a parent!

Reugny · 26/10/2023 16:02

There are care homes for ill/disabled adults to be looked after but not with their children.

Social services won't engage unless it is crisis they need to be involved in.

It would be better for friend to identify:

  1. Potential kinship carers for her child and make sure the child starts knowing them,
  2. Potential supportive people who will ensure adult social care/care home does what it needs for her wife. (This is a minimum of weekly involvement preferably by more than one person.)

As well as go to a solicitor to ensure wills and trusts, if needed, are drawn up. This may mean how they own their home is changed so that friend's money goes to the child while wife's money is for her care alone.

Depending on wife's condition and the care needed it is likely that she will run out of money before long.

Then if friend dies/is seriously ill the kinship carers and supportive people get involved to notify children's social services that wife cannot take care of child and is a threat to child's safety. If child is at nursery or school, then they should be told the situation as well as they can notify social services if child doesn't turn up for a day.

The only time I know adult social services get involved without a fight by families is if someone ends up in hospital.

The potential kinship carer(s) can't just take the child away unless the wife agrees. So she needs to be convinced in that situation to agree. This is why as a PP indicated that a discussion needs to be have with her about what happens to her and child if friend drops dead.

Reugny · 26/10/2023 16:06

Icedlatteplease · 26/10/2023 16:01

I think there are, but in all honesty that might not be the best result. The best result might be seeing what support can't be provided to keep the family together.

But that might be very hard if the friends wife isn't entirely on board/isn't realistic about tge extent of the difficulties

If the wife has a dementia-like-illness would it be in the child's best interests to be around her all the time?

I know people who as teens were upset and then traumatised over a beloved grandparent moving in and declining in front of them.

JoanOgden · 26/10/2023 16:11

Does either parent have close siblings or friends who would be able to get very involved to ensure that enough support was being provided? Even if insurance could pay for a nanny, someone will need to find a nanny, arrange pay, resolve any issues etc. Also to manage assets - for which they would need a lasting power of attorney.

SnowdaySewday · 26/10/2023 16:22

Whatever the outcomes of her own medical tests (obviously hoping they do not bring bad news), your friend can seek support as a carer.

She needs to create a What If? plan. This is the name for a local scheme but carers charities (ask at GP surgery or citizens advice for local contacts) can support with setting this up. The plan is then registered and your friend would carry a card to say it exists. If she were suddenly not able to care for her child and wife, e.g. if she became acutely unwell or involved in an accident, the plan would state who needs to be contacted and who will undertake tasks like picking child up from school/ nursery and looking after them and wife in the immediate short term until your friend can take over again or longer-term arrangements made.

Friend can have added to her own medical records that she is a carer for her wife and can seek support for child through Young Carers.

Has wife arranged for someone other than your friend to have Power of Attorney? This needs to be done whilst that person has capacity and is then activated when it is needed.

Lastly, does the child have a known father? If the mother's circumstances change significantly and there is a former partner in the background somewhere, how will he react, e.g. would he try to change the custody arrangements?

Mossstitch · 26/10/2023 16:23

I have a bit of experience with MS patients as you describe and I'm sorry but your friend needs to name a legal guardian for the child sooner rather than later and ensure it is someone they know well or develop their relationship now.
That kind of cognitive impairment caused by the plaques on the brain is only going to get worse. In some ways I always think it's a kindness for the patient, seems to make them euphoric/child like and protects them from the full extent of their prognosis, but they would definitely not be capable of caring for a child or have the mental capacity to make important desions for them or keep them safe.
I hope your friends illness proves curable💐

gotomomo · 26/10/2023 16:39

Unfortunately the description of your friends wife matches that of a friend of mine from a while ago, she's no longer with us, really tough. I think taking legal advice and advice from social services is essential, naming a guardian is important but would only be useful if it is decided that the wife doesn't have capacity to be the child's parent, only the court of protection can do this.

I think working out if there is a suitable family member or friend willing to be the child's legal guardian, potentially adopting the child is a good first step though because unless there's someone then it's simply not a scenario they can plan for.

The good news is than medicine today often can treat serious conditions, at least to the life extending point, and the longer she can live the easier it is to make provision plus an older child could live more easily with support with a disabled parent.

If you do need to go down the court of protection route, do pm me, we've had to have a lot of dealing unfortunately so can give a bit of advice or at least sympathy for the number of forms!

Howtohelpmyfriend · 26/10/2023 16:56

Mossstitch · 26/10/2023 16:23

I have a bit of experience with MS patients as you describe and I'm sorry but your friend needs to name a legal guardian for the child sooner rather than later and ensure it is someone they know well or develop their relationship now.
That kind of cognitive impairment caused by the plaques on the brain is only going to get worse. In some ways I always think it's a kindness for the patient, seems to make them euphoric/child like and protects them from the full extent of their prognosis, but they would definitely not be capable of caring for a child or have the mental capacity to make important desions for them or keep them safe.
I hope your friends illness proves curable💐

Thanks that's helpful that you recognise the sort of thing I'm talking about as I'm fully convinced that Wife wouldn't be able to cope even with a nanny etc. It's the decision making and all of that. She wouldn't have the capacity to be the employer of a nanny or instruct them. Childlike and euphoric is a good description. She's lovely and I think she's great and she and Child have a beautiful loving bond which is important to preserve...but she just wouldn't be safe as an unsupervised carer.

I suppose the thing I wasn't sure about was whether Friend even could name a legal guardian if one parent is still living. Or whether that could only happen after there's been a crisis forced and Wife has been declared incompetent. Maybe that's a question for a solicitor.

OP posts:
JoanOgden · 26/10/2023 16:57

Yes, your friend absolutely needs good legal advice

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