Carer Rates

[Lord Chatterley]

Does anyone else employ live-in carers? My local authority claim they don't issue Direct Payments to fund live-in carers but isn't someone with equivalent to a C4 injury entitled to such?

LC

[Burgerman]

No idea. But I have 3 unused bedrooms and 2 spare shower/batrooms. And it may be an idea for me in the future. So also interested.

[Irving]

Does anyone else employ live-in carers? My local authority claim they don't issue Direct Payments to fund live-in carers but isn't someone with equivalent to a C4 injury entitled to such?

LC

As discussed there is a legal right to live in care for certain conditions funded by the NHS through your local CCG, called Continuing Health Care (CHC) . AFAIK there is no such similar arrangement for Local Authority Direct Payments.

CHC checklist & process

note: this isn't the definitive checklist but a simplified explanation from an organisation that can help develop & support your case. I'm not recommending or promoting them, I know nothing about them.

[wheelie junkie]

The qualifying criteria for CHC is based around a number of health domains where a required number must be severe. If you qualify you will be assessed for the number of hours care you will get. You then have the option of using a care company or a Personal Health Budget which you could use to pay for live in care provided that care matched the identified health needs. The key to it is qualification criteria, it is difficult to have the health needs that qualify. Eg, there is a mobility section, I'm c3 complete with only head movement and only score high not severe because I am not bed bound, I get into a chair and this knocks the score down. Fortunately I can't breathe so score severe on that and it requires a support worker with me at all times. Complicated and you need to get support from different parts of the NHS before you apply.

[Irving]

The qualifying criteria for CHC is based around a number of health domains where a required number must be severe. If you qualify you will be assessed for the number of hours care you will get. You then have the option of using a care company or a Personal Health Budget which you could use to pay for live in care provided that care matched the identified health needs. The key to it is qualification criteria, it is difficult to have the health needs that qualify. Eg, there is a mobility section, I'm c3 complete with only head movement and only score high not severe because I am not bed bound, I get into a chair and this knocks the score down. Fortunately I can't breathe so score severe on that and it requires a support worker with me at all times. Complicated and you need to get support from different parts of the NHS before you apply.

That's strange because as a C5/C6 complete tetra I qualified with no problems. All complete tetras in UK and many others with similar conditions now qualify for NHS rather than LA funding after Pamela Coughlan's landmark court ruling - but I'm sure you're aware of that although its true some CCG try hard to downplay severity but get overturned on appeal, but my friends at Aspire and SIA tell me they're winning more often than not now (I don't know about non-SCI conditions, but a friend who contracted MND 2y ago recently qualified for a package as her condition has deteriorated to the extent that her husband can no longer cope on his own). Having said that, the system is still broken as this 2015 report shows, and yes there is still a post-code lottery element.

[wheelie junkie]

You need to have as much information as possible so they can't down score and it is a postcode lottery on hours of care allocated and hourly rate. I'm 4 miles from a C1 incomplete, I'm vented, he isn't, I have no sensation and can't tell if I have pressure on an ischial so need constant moving, he has sensation and can tell if/when he needs moving. I'm always at risk of vent failure and with only one support worker they have to go to the toilet I'm left alone. Even with this risk he gets 5 hours a day double up cover than me. I've another friend C5 complete, different CHC team 20 miles away, same care company and they get about £3/hour more so can pay higher rates to carers. No-one can explain why someone with lower risks gets more hours or why someone with no life threatening problems has support workers on a higher rate of pay.

I don't know if you are aware of CCG's rewriting the CHC framework to include cost as well as other factors, there are numerous examples of this but probably the most conclusive is a commons briefing paper for MP's so they can assist constituents https://researchbriefings.files.parliam ... N06128.pdf you can see the concerns on rewriting and changes to DST. https://www.disabilitynewsservice.com/p ... l-problem/ gives a reasonable explanation of the situation sadly the link to Disability United and the spreadsheet of CCG's rewriting the framework is dead.

The revised 2018 CHC framework has helped clarify a number of things but the drive to change checklist and DST is still going on. I've refused to do a full DST this year referring them back to the new framework, don't know how happy they were about it but I got confirmation of CHC quicker than my friend who had a full DST a few weeks earlier than my only discussing substantial changes stance. There should be no argument with a high level SCI, my condition is not going to improve but by changing the checklist and DST they think that they can reduce costs and some CCG's are actively looking at moving CHC recipients into care homes. Easy to justify as most now have financial clauses in their remit and best value forms part of that.

You have to know what your rights are and be prepared to fight but if every CCG implements a different version of the framework it makes the job of the likes of SIA more difficult so it really is up to the individual to understand what their local CCG is doing.

[wheelie junkie]

Just found that I saved the excel file, you can see just how widespread it is

CCG-CHC-policies.xlsx

(25.34 KiB) Downloaded 159 times

[Burgerman]

You take way too much notice of what people type. You get what you argue and fight for. Say 80%. And what the rules that knobody understands and that are as flexible as they choose to make it on that day, 20%. Official positions are flexible, depend who typed it, and who interprets it. And the strength and logic of your argument as well as the opinions of any that 'assess' your needs. If you are black, gay, muslim, or if you are a 'difficult' person (wont take no for an answer), you are way more likely to get a better solution.

[wheelie junkie]

Which is why you need to understand the system and that you find the person who can make decisions. As Irving says you can use the likes of the SIA because the CHC framework is so screwed up with individual versions you have to learn what changes get made and appeal if needed. The pdf commons briefing paper is a good place to start. You also need to understand the numbers involved and why the CCG is trying to cut, over £200k a year for mine and it is funny how much effort and lack of flexibility that brings.

You have to have a good DST who explain the reasoning for the proposed package and not let the CHC or CCG override that decision or you will end up at an appeal. And don't expect any media or public support once the numbers are published.

When carried out correctly it does work but from the 6 friends locally who rely on it we all see the inconsistent application of the rules. Knowledge =power but don't expect logic. Personally I use the new framework all the time with them just to keep the cover my package provides. I'm due to meet with them as one of the discussions during my update interview was the mental stress because of a shortage of carers and what they could do to reduce the stress. Play them at their own game

[Irving]

Personally I use the new framework all the time with them just to keep the cover my package provides. I'm due to meet with them as one of the discussions during my update interview was the mental stress because of a shortage of carers and what they could do to reduce the stress. Play them at their own game

And that shows the difference between CCGs. My review for last 6y is with the CCGs 1 nurse-practioner; we have a friendly chat over tea n cake and she documents 'no change in condition' and so is approved for another year. One year we did it on the phone!

[wheelie junkie]

The new framework clarifies that a full DST isn't needed. CCG is meant to appoint someone to work with you and identify changes which might need package changes, typically it is passed to a DN. I insisted that it was done this way not using a DST. Meeting took an hour instead of 4.I tried to include the mental health issues, CHC team weren't interested but CCG did pick up on it and I can arrange a meeting to discuss. Tbh more than I expected but they know that I am struggling mentally.

[Burgerman]

I think thats because you take way too much notice of rules, paperwork, legislation, and all the wooly possible interretations and variations of this stuff. Its mostly written by lawyers and nobody understands it, and you get whatever you argue for, or whatever they decide on the day. You do appear to get hung up on complexities and details.

[wheelie junkie]

If I didn't understand the details I would still be wasting time doing pointless meetings. From reading the latest framework areas that weren't clear like support workers doing domestic work now are so no more arguing over that. It all just adds to the case you make for whatever you want/need, knowledge = power.

[Lord Chatterley]

Has anyone used an advocate? Sounds to me like someone with experience of both the local authority and national health provision would be useful.

LC

[Lord Chatterley]

For those who use Direct Payments to fund carers without relying on an agency:

1.Do you use a separate bank account specifically to receive DP and pay carers?
2. Do you pay your carers National Insurance or are they self-employed?

LC

[Burgerman]

1. yes
2. I employ them, and use a payroll agancy. I just send in hours once a month, by email they do all the wage slips, tax, ni, hol pay, job contract, pension details etc. Pendrels.

So once a month they send me a letter. How much to pay the carers and a printed wage slip. And every 3 months how much to pay the inland revenue. So easy that even I can do it... Yes, seperate wages account. The LA pay in monthly. I pay in my contribution monthly. I pay tax and wages by cheque, post monthly.

[Irving]

For those who use Direct Payments to fund carers without relying on an agency:

1.Do you use a separate bank account specifically to receive DP and pay carers?
2. Do you pay your carers National Insurance or are they self-employed?

LC

1 Yes, it costs nothing and makes sense
2 Mine are employed and pay tax and NI and one has workplace pension, others opted out. I run the payroll myself, takes 10 min once a week. i pay my carers weekly and HMRC monthly (I could do it quarterly if I wanted).