Care needs assessment

[Fiz]

I agree I am sure it is a tax and also agree that had I known my contribution would be this large I would never have applied for care. They'd save themselves time and money by being transparent about costs from the start. 

My PIP care is £179.20 and my disability related expenses are £117.17 and I had read on another local authority's website that they take 10% of disposable income as contributions towards care cost so had thought in my head I might be asked for £6.21 a week which is doable. It seems my local authority take more than someone's entire disposable income. 

I managed to complete the online form yesterday for good life sorted. I am aiming to find someone to help me meal prep for two hours fortnightly. If all goes well with the helper I may add an hour during the week she isn't coming to help me move things around that I am unable to lift and carry. At least with good life sorted they are all enhanced DBS and are self employed so no worries about taxing plus no contract and if you cancel a week, you don't pay.

[Sunny Clouds]

That sounds promising. 

When I was a child and people like my nana got help from the council then later moved into a dementia ward, it may have sounded very restrictive, but the 'care in the community' we were sold has turned out to be even more disempowering, with DLA and AA never really being enough, then the 'austerity' cuts both directly to benefits and indirectly to council budgets.

The other thing is that when I was at school, in the sixth form, we did community service, rotating round elders' homes to help.  Ok, so there was no continuity, but it was just a bit of extra help on top of the council's meals on wheels etc.  My all time absurdity was a woman with a small front lawn and no way to cut it.  She had no garden shears, so in desperation, I used a pair of large scissors.  Yes, daft, but it gave me an experience I can still laugh at decades later and it gave her a tidy lawn that was otherwise neglected.  She felt ok to laugh with me at the time, too.

Also, in those days, more women were housewives, and more pottered to the shops and were happy to do a bit of shopping for neighbours with no embarassment.  Thus my nana got meals on wheels plus other shopping.

Where I live, the pandemic's been brilliant for networking our community to volunteer, e.g. I pick up a neighbour's medication for her, and I'd like to see that expanded.  If it hadn't been for the pandemic, I think by now I'd have asked for help with paperwork.  I don't mean to do the paperwork, I mean to sit with me and calm me while I do it.

I see more hope in community help than state help these days.

[Fiz]

Having paused the care while I have a think, a massive weight has lifted from my shoulders. No one is going to walk in my house at any given time within a 6 hour period, my life is no longer ruled by 'when' or if they might arrive. I haven't experienced any hypersomnia since stopping steroids so I am no longer having several days in a row unable to get up so I feel I can manage. 

Unfortunately good life sorted don't have any assistants in my area available so I will have to manage without help at the moment. I have cancelled the meal prep ingredients for this Friday's online supermarket delivery as I am not sure I will manage it and have quite a few meal preps in the freezer for the next fortnight.

I'm unsure about advertising locally for someone to help me meal prep, I like to feel somebody is understanding, DBS checked and tax and NI is paid. If I struggle I will have to think again.

[Sunny Clouds]

It's a difficult balance, isn't it, between the plus of having help with things that are difficult and the minus of the help being provided disruptively?

I hope you can find some help.

Mind you, when Dad couldn't cope with cooking safely but was still living at home, I started stocking up on Wiltshire Farm Foods ready meals.  I suppose being processed food, they have the disadvantages that entails, but he ate worse junk than that anyway.  I wish I could say that I ate better.

[Fiz]

Got the final financial assessment today. They assessed my contribution to be £60.42 a week and the care they had been providing was £69 so the Council would pay about £9. 

My disposable income is about £50 a week and out of that I buy petrol to visit my family and friends, sometimes parking fees and social things oh and Christmas and birthday presents for my family. There's no way in a million years I could afford £60 a week it would push me into poverty and I would have no quality of life. 

I'm going to try and find someone to help me chop vegetables for two hours every fortnight for my meal preps. I'm already stressed about how to source the right person.

[Sunny Clouds]

I find it disgusting the way the modern system expects people to find money for care.

[ditchdwellers]

I echo Sunny's comments wholeheartedly. It's totally inhumane to treat people like this in a so called civilised society. It makes me so angry, embarrassed,  and ashamed all at the same time. 

If you are just looking for someone to do meal prep etc, how about doing a quick Google for domicillary care providers in your area and call around a few.  When my mother in law was just having daytime care , we were paying something in the region of £20.00 - £23.00 hr (last year) using a small company set up by two women who used to be carers for one of the large agencies and didn't like the way they were run and the standard of care. They were excellent.  Although this is a lot of money out of your budget, and awful lot of food prep could be done in an hour.

Alternatively,  I don't know how you would feel about searching for a local volunteering group who could come out and help you. I'm sure the volunteers would be DBS checked if you asked. The local council or library may be a place to start. 

I really hope you find someone to help you out soon Fiz.  You so deserve it 

[Fiz]

My allotted social worker telephoned and was sympathetic. She went and spoke to her manager and it was agreed they could take into account the hydrotherapy cost as being disability related as an exception reducing my contribution to £40 something or other which just makes it affordable however she said that if I am only wanting meal prep help then it would be cheaper for me to arrange that myself. She's posting me a list of agencies/companies that could help with that and told me to come back to her if my needs changed. 

I hadn't realised that the financial assessor hadn't accepted the hydrotherapy as being disability related. I do that for fun obviously! I hate the experience actually but am just trying to strengthen back muscles to support my spine more and reduce pain. Still, at least I know that you're fleeced to the extent of having no social money when assessed for care now. Though they've increased the savings you can have without having to take it into account to £16,000! I'd love £16,000! It's the same contribution whether you have zilch savings or £15999 which doesn't seem right to me.

[Sunny Clouds]

The whole thing is ridiculous.

Having said that, trying to say what is or isn't disability support isn't always easy.  Non-disabled people don't always get it, and I love it when they do.

For instance - mobility.  For me, the biggest problem has almost always been psychological.  Sometimes depression, sometimes fear of falling with ataxia. The people that really understood what helped most with it were the people that I paid for help.  Who were they?  Taxi drivers.  Yes, for some people, having a taxi to somewhere is a form of transport and nothing else.  For me it was 'friendly face to take me somewhere when I was struggling'.

As for savings limits, they're cruelly low.  But then most benefits are cruelly low.

I say that aware that I'm on a level of benefits that's above what a lot of people have and now have the privilege of living in a family home, so I'm not struggling.  That's to say that I rant about this whether it affects me or not.

[Fiz]

On the day of the financial assessment when I was told how much my contribution towards my care would be which is more than I could afford I phoned the care agency and cancelled the care so I have not received any care since. 

Today I have received a bill for dates 18/5-7/6 which is obviously unaffordable. I thought all care prior to the financial assessment was non chargeable? Do I have to pay this? I could cry.

[ditchdwellers]

Definitely appeal the charges, and at the very least tell them that you are too unwell to deal with it currently. 
If they do insist that you are liable for the charges, then why not try enlisting the help of your helpful MP again? I'm sure they would be shocked at the way in which disabled people are being treated in their patch.

I'm so sorry this whole pitiful saga has raised its ugly head to bite you on the bum again. It sickens me when I think of how hard you have tried to get what you should be rightfully entitled to. 

[Fiz]

I think I will write to my MP. I think it should be unlawful to charge people an undeclared unannounced sum of money, it's not even as if what they were doing was meeting my needs and they rarely turned up before 11am when breakfast was part of their role and twice didn't turn up at all. I simply don't have the energy currently though, I just hope I can do it within the 28 days the bill says that I need to pay it by. Maybe I should buy a lottery ticket online and deal with it that way.

[Sunny Clouds]

A long-shot - is there anything they did that was harmful to you or your property in some way that you could suggest they should knock off the bill?  Just a thought.

[Fiz]

They barely walked in the door. They were meant to prepare breakfast but I never wanted it at 11.30 so usually they made a mug of tea and left. I'm shocked that it's lawful they can charge you what they like, I was specifically told verbally at my needs assessment by the reablement team that I would not be charged for anything prior to the financial assessment and that it would be free and as that was the case when I worked in care management for adult services I had no reason to believe she was lieing.

[Sunny Clouds]

This is horrible.