Adult social care help please

[Knackeredneon]

Not sure where to post this and slightly posting for traffic. Please be gentle as I'm at the end of my tether with this.

I'm trying to support my grandparents (mid 80s) and in failing health. My mum, their daughter is now an only child so it's also about helping her navigate stuff.

I arranged an adult social care assessment today for them which my mum attended. They're not really able to keep their home clean anymore and struggle with cooking. We help as much as we can but it's a lot.

My grandma also need help with personal care and my grandad does this. She doesn't want someone coming on to do it at this point (that's a separate battle)

During the appointment the person from ss / the council said that if the main help they needed or wanted was with keeping their home clean (and therfore safe) that would always have to be paid for.

This doesn't seem right to me as if for example there was an elderly person who had personal care and had a carer coming in
the carer would say help them wash and get up and eat, yet would have them live in dirt as if you can't wash yourself you wouldn't be able to clean your home.so a blanket approach of social care doesn't provide cleaning seems bonkers.

I feel like their being fobbed off and don't know where to turn. Does anyone know anything about social care providing help with cleaning? Or where I can get advice from as the council themselves seem out to give the least support possible. Thanks.

@Knackeredneon

I suppose it just feels a bit nonsensical that maintaining nutrition and personal hygiene is in the acceptable list of things which are paid for but maintaining a clean home and clothes is in the not allowable and therfore not paid for list. I suppose you'd die more quickly without food or personal hygiene. But really it's not like the home has no impact on health and wellbeing.

As I say if an older person was on a low income say state pension and has personal care they seem to be either expected to live in dirt or pay for cleaning which they can't afford. So therefore live in dirt.

It's not about them not wanting to do it. It's about them not being able to. Which to me feels like a social care need. But obviously I know shit all! Or just have a different view of what is or isn't acceptable.

If they aren't already then they could possibly claim attendance allowance which could be used to cover the cost of cleaning.

@Postdatedpandemic

Money for care is tight. Your grandad does the care currently, the council will be happy with that as it is the cheapest option. Frankly they will probably be happy with that until he keels over. Food, councils pay carers to pop in and reheat a ready meal. It is not great. Almost everyone has to contribute towards their own care. A cleaner costs £20 pounds a week or so. This is probably below the limit where the council have to get involved.

They will be allowed to fester at home long before they are considered for a home. Homes are normally only considered for end of life care.

Better to sit down with your mum, work out as big a care package as you can think of and ask for that. The council will trim it down but hopefully the end result will improve life for your grandparents.

Social care is hash, inadequate and under funded.

He was actually in hospital the weekend before last and it was a fucking nightmare!! My mum had to stay at their house. In addition to getting stuff to my grandad in hospital, working out what was going on with his alth and taking him collecting him from the hospital.

So I feel we've had a taster of him not doing the caring already. I do feel there is an element of the council being happy for him / us to do it.

I know social care is a mess and money tight. But I think when you see loved ones on the receiving end of it it's so brutal!

If they have to contribute to their own care then that how it is. But just the blanket no go approach to maintaining a home seems a bit bonkers.

I wouldn't know how to start with a proposed care package. I'll see what comes out of the assessment. And maybe see if a carers charity can advise.

Thanks for all the advice and replies.

@hatgirl I'll look into the attendance allowance as pp's have mentioned too. I'm not totally sure what they get. I know they get the warm home discount as my sister sorted it but that's it!

Also I'm wondering if paying for a cleaner even between family is an easier route for now. But it's just (as I keep saying sorry!) the blanket approach to cleaning sounded unfair. But I think that probably just because it is.

Also a pp who said cleaners can be a good way to introduce carers. Too tip! Thanks

The issue is that your grandmother has significant care needs that are currently being met by your grandfather because that is what she wants. She would meet the requirements for a care package if she was accepting of having external carers for personal care and then that would be a gateway into a larger package that could incorporate cleaning, cooking and shopping.

However as currently your grandfather is picking up the bulk of the care needs it is highly unlikely that social service will provide a cleaning service as this can be accessed privately using the attendance allowance benefit (that is the intended purpose of the payment) to fund it.

No it isn’t right but the truth is that social services is massively underfunded, understaffed and working on a priority basis only. It’s been this way for years.

Glad the cleaner tip was useful. Try local fb recommendations/ word of mouth from local gp / friends post office etc.
So many elderlies get to know carers and trust the brought in help if done carefully. Much better than agency if you can avoid. Age uk used to employ cleaners you can book.

@Knackeredneon

I suppose it just feels a bit nonsensical that maintaining nutrition and personal hygiene is in the acceptable list of things which are paid for but maintaining a clean home and clothes is in the not allowable and therfore not paid for list. I suppose you'd die more quickly without food or personal hygiene. But really it's not like the home has no impact on health and wellbeing.

As I say if an older person was on a low income say state pension and has personal care they seem to be either expected to live in dirt or pay for cleaning which they can't afford. So therefore live in dirt.

It's not about them not wanting to do it. It's about them not being able to. Which to me feels like a social care need. But obviously I know shit all! Or just have a different view of what is or isn't acceptable.

If grandma is that disabled she should be entitled to Attendance Allowance. She can then use that money to pay for a cleaner and use whatever is left over to pay for something that will improve her quality of life, whether that's turning the heating up, taxis so she can get out to visit friends or eg something like wool so she could take up a new hobby of knitting for example.

I don't know whether someone caring for her can also claim Carer's Allowance, which could be used to improve that person's life eg spa day once a month for your stressed out mum or grandad buying in respite care to give himself a break. But it might be that it's Attendance Allowance or Carer's Allowance not both. Only one person can claim Carer's Allowance too, I think.

Social services don't comply with the law. Yes people's wellbeing is important but they like to ignore that in the interests of paying as little out as possible. No she won't be expected to go into a home, she'll definitely have a care package before that because homes are even more expensive for social services than care packages. If grandma says everything is fine family are her carers and she doesn't need anybody else, social services will say great case closed then. They don't care how difficult it is for family. All they care about is if family are doing it or not.

It is, but shouldn't be, different in different locations because the law is nationwide and "this council's rules" don't trump the law. But they'll tell you it does and hope you don't know any better.

Apply for attendance allowance stating she needs help for personal care. Give the worst care scenario on a bad day. If she has mental health conditions which affect her memory highlight that too with regards to getting up at night and medication prompts etc.

Oh and attendance allowance isn't means tested.

Ok the info re attendance allowance makes more sense. I'm not sure what the definition of disabled is but she needs a wheelchair for leaving the house which she is pushed in. With help and with rests she could walk to the car right outside her gate then into say my mums house to go for a coffee. She can't even do this right now due to a bout of dihorrea.

But just to give an idea if her ability. That seems like a disability to me. So hope she'd get it.

@AmberIsACertainty thanks for the reply. Honestly I think this is why carers and advice charities are so important as navigating it is a nightmare. I do think unfortunately they are out to save money. Which I understand in a wsy but not at the expense of people's wellbeing.

I feel like it's quite hard to find our what the law actually is and then as you say the council will say we'll our rules say... And then people don't know where they stand.

The council can’t say their rules...they have to follow the care act.

Definitely look into Attendance Allowance - remember to complete the form with the worst day scenario. Don’t downplay things!

Find out if your grandad can have a carers assessment. I often complete these and give payments to informal family carers towards the cost of cleaners. Every little helps.

I really recommend www.scie.org.uk for more information about the care act.

My mum has carers - 2 carers 4 times a day. She is completely bed bound and has dementia. She currently pays for this herself. They also have a cleaner via Age Concern, but this is paid for separately. She does get the highest level of attendance allowance, but this in no way covers the costs.

My MIL & FIL both needed help. Each thought they were caring for the other...
Anyway, a helpful person from the council cottoned on to this and advised they could each apply for Attendance Allowance.
They also opted for Direct Payments.
The extra funds allowed them to arrange for private carers, who did do some cleaning as well as all the personal care.
It certainly allowed them to stay in their own home as long as possible.

Keep knocking on doors and asking around locally. And do read the Elderly Parents forum on here. You'll find lots of people wrestling with similar issues (and worse!).

@Numbersarefun

My mum has carers - 2 carers 4 times a day. She is completely bed bound and has dementia. She currently pays for this herself. They also have a cleaner via Age Concern, but this is paid for separately. She does get the highest level of attendance allowance, but this in no way covers the costs.

Is that to do with her income or savings though? Not saying this is right. But my understanding was that all care needs were means tested. Rather than some things just not being covered.

Or is it a thing to do with where she lives?

The care act is different in different parts of the UK. Many councils won't advertise what applies in their area. That's why @Knackeredneon you need to contact the disability law service to get the criteria for where in the UK you are. Then make sure any assessment is done from those criteria.

My council use a very short form to identify a single need and third sector provider who will help e.g. mental health charity for those with mental illness.

The Care Act itself only applies in England and the statutory guidance is applicable to all local authorities. While how a local authority carries out an assessment may vary, the requirement to assess and the eligibility criteria (and all the other hundreds of pages of guidance) apply universally, wherever you live.

Agree with Ginger. I suggest you ask for your Grandad to have a carers assessment - it should've been offered really
Also - have your grandparents applied for attendance allowance? They could use this to pay for a cleaner

Social services can provide money for a cleaner BUT their budgets are so tight it’s really hard to get, especially if they aren’t wanting other care. Unless they can barely get by with no savings they will also be expected to contribute towards their care (cleaning) package

@Numbersarefun have you had a ChC assessment? Sounds like your mum would qualify for funding from them but they are a nightmare who don’t like awarding the amount of points so you have to fight them. There’s a few websites with info and advice

Thanks for the replies. Lots of things to follow up on.

I feel like it's quite hard to find our what the law actually is and then as you say the council will say we'll our rules say... And then people don't know where they stand.

This is done deliberately. For exactly that reason.

The care act isn't only England. Though other UK countries will have their own version. The law for the country applies to the whole country. The council can and do make up as many illegal rules as they like, they wouldn't stand up in court. Unfortunately, as many of the people they're dealing with are ill and struggling, poor, with little or no knowledge of the law, and without effective or any advocacy, they don't get taken to court much.

Social Care is a devolved function so while there are provisions in the Care Act relating to Wales, NI and Scotland (mainly about cross-border placements, disputes and provider failure) the functions relating to assessing and meeting need apply to English local authorities only. Wales has its own legislation (Social Services and Wellbeing Act 2014), NI has a series of different pieces of legislation. Scotland’s approach is quite different again with numerous pieces of legislation in place.

OP, the care act statutory guidance is surprisingly easy reading (though very long!) so you can get a sense of what is supposed to happen.

And councils don’t (usually) need to be taken to court to resolve issues with care act assessments. There is a statutory complaint process including escalation to the Ombudsman (including for those who pay for their own care).

@GingerAndTheBiscuits when I complained I was immediately discharged and told to go through the entire process again which I wasn't able to do as my specialists refused to engage again, nor could the solicitor I'd employed to help me (the solicitor needing paying and I couldn't afford to do so). The ombudsman wouldn't help as I'd been discharged. The ombudsman told me to get solicitor involved again but I couldn't afford to do so.

No one told me that if I complained then I'd immediately be removed from the process.

should read "removed from accessing services and assessment process" (sorry not having very good day today).

I’m sorry that happened to you Becca, and I know the fear of having services withdrawn often puts people off complaining even where they have very good grounds to do so.