Cost of social care. Aibu

[Onlyifyouknewthetruth2026]

My son gets overnight respite 2 nights a month. Not a great amount but still respite. I have attached a pic showing the annual cost which is alot. Just for reference.

Got me thinking about social care and money.
With a aging population and more calls for social care no wonder it's on its knees
Im curious what others think about the cost.

When the child is born then does the responsibility for caring for the child shift automatically to the state because they are disabled?

This completely misunderstands the role of parent carers. It isn’t about stepping in to provide all the care parents provide.

The vast, vast majority of people cannot afford to fund care for severely disabled DC themselves no matter how much personal responsibility, planning and forethought they take. It goes well beyond that. Even for those disabled DC who are not severely disabled, many cannot afford the care themselves no matter how much personal responsibility, planning and forethought they give to the matter.

Most children can take more responsibility for themselves as they age. Some disabled children cannot. Some children will always require less sleep, wake frequently and not be safe on their own or require medical support during the evening essentially in this sense these parents have the baby sleep years forever or until they stop caring for their child.

At some stage most children are expected to support themselves financially. Those with complex needs can't, they'll never work. Their benefits mainly go to the LA (unless they get chc funding which is being refused more and more) so parents are still expected to feed and clothe them.

These children cannot be left alone, they cannot get to school or home by themselves, can't do basic self care for themselves. So parents have to do it fir them until they stop caring for them. Imagine changing nappies for an adult with pubic hair and hormone impacts. We're not talking about babies we're talking about fully grown adults who can be strong and bigger than their parents.

Many parent carers have to take reduced hours at work or give up work all together. Think about the imoact on pensions, mortgages, savings etc it becomes nearly impossible for most.

I think many of these posters can't imagine what some of us have to deal with, with years of sleep deprivation.

I think the country/ gov have a choice on how we spend money and while i do think there are massive cuts and changes that can be made to dla/ pip/ childrens services/ adult services i don't think cuts to those who need the most support and are most vulnerable is the place to start.

I understand this and I think most reasonably minded people could sympathise and empathise to some extent. Most families will have a disabled person in their family and have experience of the practical, emotional and financial challenges of what caring for disabled people looks like. This will only increase due to our demographics and percentage of older people that are far more likely to be disabled.

If paying people to provide external care for our loved ones is too expensive then we have two choices:

1. Reduce the number of people that are eligible for assistance
2. Reduce the amount of assistance offered to individuals

Both of these options mean more will inevitably fall onto families who have to pick up the slack but what is the alternative? I say this as someone that has a disabled family member who would have to get a lot more involved if state assistance was reduced

I don’t think you do understand. Your posts certainly indicate you don’t.

Cutting support to the extent suggested will increase costs elsewhere. For example, admissions to hospital will increase/be prolonged, more will pursue residential education placements, more carers will reach carer burnout and cost the NHS money, more will challenge Children’s Continuing Care/Adult CHC funding refusals and take challenges further…

I think what you don't understand is that rules around who qualifies for what would need to be changed if cuts are made and this will mean that funding refusals won't be challenged easily and residential placements will be very hard to obtain. This is the only way to make cuts work and I think we need to be honest about that.

Also not all cuts would lead to the increase you foresee elsewhere. For my disabled relatives for example, the cuts wouldn't impact NHS admissions and they would never be eligible for a residential placement. The cuts would impact quality of life though for that person and I imagine we as a family would step in more to support them which won't be easy but perhaps this is the model we need to shift to.

I wasn’t talking about your disabled adult relative. I was talking about those with disabled DC (children, young people and young adult DC).

If you think parents won’t challenge funding refusals more, you are mistaken. They will. They already are. Tightening the rules won’t change that.

You say it wouldn't impact the NHS in your relatives case, and obviously I don't know what their disability is, but let's say a person has dementia and has been found wandering, so they now need more care to prevent them leaving the house alone - the police take them to hospital to get checked out and they remain there until they get suitable care, usually in a care home. If eligibility has changed do they get returned home? To wander again? Costing the police time and money next time they are found? And then the NHS again when they are checked out? Or do you expect a family member who lives elsewhere to give up their job and move their life and family to care for them? Or give up their job to have the family member live with them? And if they refuse? Then what?

I can't think of many disabilities where a reduction in care would NOT result in an increase use of the NHS. Maybe if people aren't given support to go out and about? But other care is still provided? That would likely to increase instances of pressure sores and mental health breakdown. In certain conditions a lack of meaningful activity can increase some repetitive behaviours like head banging which can cause issues.

Yes, but challenges will only be successful where the rules allow them to be. Tightening the rules will inevitably lead to less successful appeals.

I also have disabled children in my wider family. Reducing funding wouldn't necessarily increase hospital admissions or prolong them.

I don't like discussions like this as it inevitably paints me as some callous uncaring person that's desperate to remove support from vulnerable and disabled people. This absolutely isn't the case. A sustainable system will benefit disabled and vulnerable people more than anyone else as they will be the ones that are impacted the most if we lose control of our public finances and an IMF bailout is needed. Look at what happened in Argentina for example. Disabled people are disproportionately adversely impacted when we get to crisis.

There are lots of disabilities where reducing support doesn't necessarily lead to an increase in hospital admissions or at the very least not a significant increase. The dementia example is a clear case where NHS resources would be used but lots of disabled people wouldn't get bed sores or have a mental breakdown if support was withdrawn. Informal support doesn't just disappear and lots of family and friends would end up doing more. Is it ideal? Absolutely not but is this worse than risking an IMF bailout?

I disagree. I do not believe fewer appeals (and other challenges to decisions because not all challenges are via appeals) by parents will be successful. Not at all.

It may not increase or prolong hospital admissions for your family, although wider family don’t always have the full picture, but it would for many. It wouldn’t need there to be an increase in every case for it to increase the overall cost.

If you change the rules to ensure this will be the case then of course fewer appeals would be successful. The appeals can only work within the rules as they stand at the time. If you tighten eligibility then appeals that would be successful today wouldn't be successful after the rule change. It's a weird point to argue. The government does this all the time in various areas.

I can remember covering the forecast of an ageing population in my Sociology A levels in the late 80s, it's not just crept around the corner. Its a multifaceted problem, the need for more working adults, reduced the availability of family care and each successive government uses Education, NHS and Social care as a political lever. As all 3 are in the complete control of the then government, changes or plans have a 4 year lifespan, and that often includes the need for Bills, and Acts to come into force. All 3 should be dealt with on a cross party basis, and actually serve the people instead of playing political football....and repeat.

I think that poster means though it would be considered more your fault for not stepping up and supporting your family. If the government cannot provide the care you want you get two choices step up or watch the decline/demise of your family member basically.

Which is what would happen if we ended up having to have a bail out where we (government) were told what they could and could not spend on and how much.

Tighter restrictions would also be exactly that sorry you don’t qualify. Appeal sorry no grounds to appeal bye.

I am happy to read that. I saw an awful documentary about Orphanages in Romania I think years and years ago.

So more parental blame. How convenient. Parents who have disabled DC are not unaccustomed to that. The idea that parents of disabled DC should just step up more and that will resolve everything is ludicrous and demonstrates a lack of understanding of how many parents of disabled DC are already pushed to the brink.

I wasn’t just talking about appeals. As I said, there are other routes to challenging decisions. I don’t agree that tightening the rules will result in fewer people challenging decisions or fewer successful challenges. More will end up challenging the decisions, including people who haven’t needed to, to date, and I do not believe a lower proportion of those challenges will be successful.

Yes that's what I'm trying to understand. Lots of families are already doing all they can.

I've worked on the frontline of adult social care and most people don't come for support until family are beyond their capacity to cope. Often the family member or neighbour/ friend has ended up ill and can't provide the care they did and the whole thing breaks down. Lots of people don't have family and lots of their friends have already died or have caring responsibilities for their own families.

Prior to the mass increase in social care services, the NHS did bear the brunt of the issue so I find it odd that people don't believe that would be the case again. People also died younger so care was less extensive than now and then those for whom family or NHS care wasn't available were in poor houses, which were then swapped out for institutions. Also fewer women worked out of the home in a regular capacity and the female retirement age was lower, so they were more available to care for older relatives.

We cannot expect family to provide more care without radically changing society - back to times of single earner households and a cost of living to match it. Or accept a vastly increased benefits increase as people stop working to provide care.

This isn't to say I think the current model is sustainable or that it's the most effective use of resources but I don't think cutting budgets is the answer. I do think renationalised care services to keep our private equity firms would be a good move though.

Adult social care is means tested.

@roaringdragon
I didn't state that parents should be blamed. Some other poster did. Blame is a completely inappropriate word and one that I would never use.

Ultimately though if the IMF get involved then yes, rules would be tightened and support would be cut dramatically. I don't know how you think families will be able to prevent this through appeals or any other mechanism.

@Nottodaybob
This isn't to say I think the current model is sustainable or that it's the most effective use of resources but I don't think cutting budgets is the answer. I do think renationalised care services to keep our private equity firms would be a good move though
If it's unsustainable then how do you make it sustainable without cutting budgets and saving money somewhere? Rentionalising care services would cost many tens of billions of pounds if you mean buying out all the care homes and other assets. We simply don't have that kind of money.

I don't necessarily mean buying out all care homes, but legislature about who can own them would result in lots closing but as the buildings are not good for much else (and the council can refuse planning for alternative use) they would become cheaper. An easy win is bringing home care back in house as tenders run out. It would have to be a long term strategy, but nothing would be achieved over night. Cutting budgets to reduce care simply harms people. Older adults barely get sufficient amounts of care as it is and thresholds for state funded resi care are already very very high. The care act eligibility framework is not generous and LAs are already cutting support where possible - some LAs have totally removed 15 minute visits (which were predominant to administer medication) and it has resulted in lots of people not taking medication and ending up back in hospital.

@Itchthescratch where did I say you said parents should be blamed? I didn’t quote you or tag you.

For example, if you restricted social care support, more parents would challenge decisions that do not give them/their DC the full entitlement (under the then rules, even if it was less than they receive under the current rules) rather than accept an offer that provides something but not the full amount, which many currently do.

It isn’t just about the direct social care challenges either. It is the knock-on effect to other areas. For example, if you restricted social care support, more parents would pursue more support via the EHCP system. That is because social care provision that educates or trains is actually special educational provision. More parents would take on the ICB for funding. Another example, if you restrict carer hours &/or the motability scheme, some would pursue hospital transport.

It is absolute nonsense to suggest social care spending will lead to an IMF bailout! There is no evidence for this, it’s just right wing ideology and some posters seem to think, if they repeat it enough times, that will make it true somehow!

There are plenty of other levers available to the government:

1. reduce the amount of uncollected taxes of £59.2 billion
2. put the public sector employees on defined contribution pensions, like most people in the private sector. Why should the private sector employees subsidise pensions for others, that they can never hope for themselves? It’s estimated unfunded public sector pension debt is somewhere between £1.3 and £5.8 trillion
3. stop higher tax relief on private pension contributions
4. amalgamate income tax and employee’s NI; and bring pensioners into the scope of the new tax
5. stop giving £25 billion pa to Ukraine, a war which is nothing to do with us. Peace will only be achieved by talks!
6. Stop tax relief on interest on private equity debt, in takeovers
7. Stop tax relief on intellectual copyright, as is used by international companies like Starbucks to reduce UK tax
8. Increase corporation tax by 1%
9. Take social care, education and health provision back under state control from private providers to strip out the profits, private equity in particular is taking from taxpayers. It’s a nonsense to say Thatcher, etc privatised these sectors because of abuse. I lived through that era, and Thatcher said it was all about efficiency savings. Abuse occurs in schools, care homes, etc whether run by religious organisations, charities or whoever, because no one can detect a determined abuser with a clean DBS check until they get caught!

Any taxpayers who vote for proposals that they have to care for relatives with advanced dementia and/or challenging behaviour, even if it kills them, would be like turkeys voting for Christmas.

Would you also propose that say people having cancer treatment would have their treatment stopped, once they reached the limit of their NHS personal budget and they’d be tossed out onto the streets to die along with the elderly and disabled; or do your proposals only cover the elderly and disabled?

I swear some people are absolutely desperate for the IMF to come knocking at the door.

One further thought - in our view, the government should have made those, who received the £98 billion from furlough or self employed support during Covid, should have been made to pay it back, by an extra tax of say 10% pcm until it was paid off. Just like student loans. Why should the rest of the population, who had to work through it, at risk of their lives in some sectors subsidise those lying around, doing nothing in non vital industries?

Yep, and salivating at the thought of cuts to care budgets and benefits. Or so it seems...