In this article we look at the impact on state benefits when a person receives NHS Continuing Healthcare funding.
Many families report concerns about what happens to Pension Credits, Disability Living Allowance, Attendance Allowance and other benefits when a person receives Continuing Healthcare funding.
The situation can vary depending on whether a person is receiving care at home or is in a care home. It can also depend on what rate of any given benefit a person is receiving.
The benefit system can be complicated, and so we’re interested in your own experience of NHS Continuing Healthcare and state benefits. We know that the advice people receive from various quarters does not always seem to be consistent, and so your own experience will help paint a clearer picture for other families.
We’re particularly interested in:
Attendance Allowance (AA)
Disability Living Allowance (DLA)
Personal Independence Payment (PIP)
Carer’s Allowance (CA)
…but if you’ve experienced changes in additional benefits too (when receiving Continuing Healthcare), please include those as well.
So please share your experience by adding a comment below:
- If you (or your relative) receive NHS Continuing Healthcare, which of your other benefits have stopped?
- Which benefits have you kept?
- Does this relate to receiving care in a care home – or receiving care at home?
(Important: Please share your experience here only if you’re receiving state benefits AND NHS Continuing Healthcare. There’s no need to share the full history of your Continuing Healthcare situation – it’s your experience with benefits specifically that will most help other families.)
Thank you for your help.
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Hi , my mother is in an care home (not a nursing home). She is 100% funded by Continuing Healthcare (CHC). She gets some £177 weekly for Pension Credit . Is this correct or are the DWP overpaying her? I am confused and a bit worried if she is overpaid it will need to be repaid. .
Many thanks.
S
Hi Seb,
My experience was that if my husband was in a care home his benefits stopped apart from mobility on higher rate Pip. Benefits are not affected if cared at home, but it is best to notify them within 12 weeks and they will tell you
My son, who has autism, learning difficulties and epilepsy lives in a residential care home and his place there is fully funded by NHS continuing healthcare. Prior to moving into the home he received PIP at the enhanced daily living and standard mobility rates. The DWP has withdrawn both components of his PIP benefit. I expected the daily living component to be withdrawn but thought that he would continue to receive the mobility component of PIP as he lives in a residential care home, not a nursing home.
The DWP say that the mobility element of the PIP benefit has been withdrawn because they are treating the care he is receiving in the home as equivalent in status to care in a hospital. The manager of the care home and a manager at the Clinical Commissioning Group through which his continuing healthcare funding is provided have both filled in questionnaires sent to them by the DWP in which they have confirmed that the home does not provide nursing care, does not employ any NHS staff, and that my son does not receive NHS treatment in the home. Despite this evidence to the contrary the DWP stick to the view that being in the home is equivalent to being in a hospital and on these grounds have withdrawn the mobility component of the PIP benefit. Is this not contrary to the rules applying to PIP in residential care homes?
Did you get this sorted? You are right the mobility should not have been withdrawn as it’s residential, not nursing. My son boards at college 38 weeks and is CHC funded and still gets the mobility component. I have a friend whose son has a 52 week placement, so effectively full time care, and still gets the mobility component.
Hi, Christopher
I’ve just seen your post, and you are correct you are still entitled to pip mobility component. When my husband went into a care home I challenged the decision when they removed all of his pip.
Here is the article
Minister for Disabled People, Maria Miller said:
The reasoning behind the original decision was to ensure there were no overlaps in funding leading to double payments. We have spent the last few months gathering information and evidence and visiting disabled people in care homes to find out directly from them how their mobility needs are actually met in practice.
We found a complex set of overlapping responsibilities have evolved which have allowed different local authorities to deal with the issue of funding of mobility in care homes in very different ways and some practices which have lead to overlaps in funding.
However, I have always been clear that I would not make any change that would stop disabled people from getting out and about. Which is why after listening to the strong concerns of disabled people and their organisations, I have taken action and decided not to remove the payment.
An amendment to the Welfare Reform Bill will be brought forward to enable this decision to be carried through into PIP
I hope this helps
My elderly mother has just been granted a CHC package in her own home. However, my son lives with my mother and does everything for her ie, washing, cooking, cleaning, sees to her finances, her bills and is constantly there if she needs anything. He is presently her full time carer and is in receipt of Carer’s Allowance. Will CHC mean he will lose his Carer’s Allowance ?
Hello my mum is currently funded by CHC and lives in a care home. Her needs are to complex for me has a young mum to have her home. Although I would of loved for her to live with me. She currently gets universal credit but was declined PIP because of the funding. Is this correct? It would be great to get the mobility component for her has she is a full time wheel chair user, so would mean we could possibly get a vehicle to help get her out and about more to family houses. Any feed back would be help full thanks
Hi Karen – that’s great that you have managed to secure CHC for your Mum. In terms of the additional benefits speak to AGE UK or Citizens Advice they should be able to offer some advice on this. Kind regards
My wife has advanced MS and gets full NHS funding at home with a live in carer. I have recently been made redundant from my part time job, I have applied for Carers Allowance, I still play a full role in the care if my wife. Managing the care, shopping, trips out etc.
Will this have an affect on my wife’s eligibility to CHC?
Thanks
It shouldn’t. The payment for CHC is from the NHS budget and is based on your Wife’s Health Needs. Eligibility is not determined by means.
Benefits are paid by DSS and DWP and some are means tested. However, I’d be on guard for the Managed Need and Routine Care arguments at the next review of your wife’s CHC if you are now more heavily involved in the delivery of care. Remember Managed Needs are still needs.
Sorry Bob, I forgot to add this link in for you.
https://www.gov.uk/carers-allowance
Mum has been self funding her care home for nearly 2 years she has vascular dementia, she has been turned down 3 times for CHC . She had a severe stroke in February and was sent back to the care home on fast track palliative care with CHC. I informed DWP and they stopped her AA and mobility payments straight away. Now after 12 weeks the CHC assessed her again and withdrew her funding so she is back to paying £1450per week. She is hoisted, has no mobility, double incontinent, is on puréed food and thickend drink , she cannot speak and doesn’t recognise any of us now and just lays there chewing madly at her blanket , she is on calming meds when required. None of this was acceptable to the assessor as needing CHC even though it was awarded by the hospital . She is a very sick 86 year old lady who has so far paid nearly £90,000 towards her nursing home , my father died when he was 64 and bought their small 2 bed council house they were never well off and paid their dues all their lives , dad didn’t even draw much state pension as he died so young they had no savings as he didn’t earn much money . I cannot understand how anyone qualifies for CHC as she needs a nursing care. She has multiple strokes and TIA’s but assessors said it was not documented and would not take the families word for it and that the care given can be managed , the mantra of a managed need is still a need fell on deaf ears .
I have been told I can reinstate her AA but as she was in receipt of the mobility component before , she may not get it back this time.
I’m sorry if this sounds obvious, but have you actually gone through the formal appeals process? There is also the issue of why it is that in many London Boroughs, CHC is awarded to 20-30 people per 50,000 of the population, whereas further up north in can be over 200. That’s a bonkers postcode lottery.
Teresa – this is an appalling story. The real issue is that the relevant CCG should be paying the £1450 pw to the care home. This amount in itself indicates that your mum is receiving services that are much more than social care but are nonetheless being wrongly characterised as social care. In other words, the nursing and/or other healthcare services are merely incidental or ancillary to the accommodation services. From what you say, the reality is the other way round. The accommodation services are incidental or ancillary to the required nursing services. This is because your mum required nursing and/or other healthcare services which could only be facilitated by her being accommodated in a care home.
Finally, you refer to nursing (rather than residential care) home – is your mum receiving funded nursing care (FNC) from the CCG? Is it possible you’re unaware of this as it would be paid direct to the care home. You should, in this respect, ascertain the situation. If so, then there’s a fairly simple legal argument to demonstrate to the CCG that the incidental or ancillary test cannot apply and, on that basis, your mum is (and always was) eligible for CHC .
Your mother’s situation sounds much like my own mums, she got CHC without much of an issue (Herefordshire) sorry this must sound galling for you. Essentially with the incontinence and pressure sore risk, and falls risk, she was seen as having complex needs. She did/does show severe distress when moved
On page 37, this says ‘If you live at home your benefits should not change’
https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/746065/Easy_Read_Guide_-_2018_National_Framework_for_NHS_Continuing_Healthcare.pdf
People 100% funded by CHC appear to have no right to a social worker. Am I correct?
With no social worker they are incredibly vulnerable especially if the CHC funding authority takes no interest in their care.
Something truly terribly has occurred to my son because of this. I have an opportunity to to bring it to the House of Commons office in Westminster and start a petition to have the law changed so that he and others are entitled to one.
Are their readers of this column who would support this idea?
I should be surprised if The Care Act doesn’t cover the right to an assessment though.
Surely the Local Authority should have turned up at assessment and review for CHC. How else could they establish the case was beyond their remit? However, I well appreciate that the person who turns up for this probably has no prior or later contact with the patient – that was certainly my experience with an elderly relative. The phrase Self Funder seemed to be used as an excuse to do nothing to help re equipment, information about services etc. Even when I reported Safeguarding issues regarding his care, the LA had a good go at doing nothing, as his care was not commissioned by them. I think the situation may have changed since the Care Act .
I’d certainly be willing to help highlight your concern and case.
Jenny, we could certainly use any help you can give! Thank you. Over the last 12 months I’ve become increasingly knowledgeably about the rules surrounding CHC and even the “Who pays?” document. Trouble is, all these rules and regulations are simply ignored by the CHC. It’s as if they don’t exist. There’s been no 3 month review or is their a 12m review planned for next week.
I wish I could report back that the Care Act had changed everything. but I can’t. Multiple agencies have made constant reports to Safeguarding about my son’s situation, the end result of which has been absolutely nothing. Yet he hasn’t had a safe wheelchair for about 8m and for the same amount of time he’s been washed with a flannel, sitting on his toilet, because he either hasn’t had a functioning shower chair or his recently arrived new one is the wrong type, and there seems to be a problem getting it changed. He’s gone months without being able to wash his hair with the shower. Where’s the dignity in that, especially as he’s a young man of 30 who intends to get married to his long-term girlfriend in May next year?
It seems to me that it’s only when people start dying that anybody takes an interest, rendering all this Safeguarding and CQC reporting largely pointless.
As I understand it, the assessment for eligibility is one thing, his problem is the suitability of the accommodation, monitoring the quality etc.
My son is fully funded by chc and greatly disadvantaged by no longer having a social worker. Activities have stopped, very few new options have have been sourced and none funded, basically his world has become much smaller.
In January it was decided at his MDT meeting he would need to move from his supported living home.
The care manage ingorned this ,and eventually in July he was given 12 weeks notice. That expired 6 weeks ago and we still cannot get her or her manager to answer the phone or reply to an email. Meanwhile, the managers from the 2 new possible homes are ringing us to ask what’s going on as they cannot get chc to respond either.
Hello Sally,
By any chance do you live in a London Borough? They seem to be remarkably disfunctional. Things are much better in Surrey, Sussex, the Isle of Wight etc. At least they pick up the phone. We have gone through the same troubles you have. It seems the reason why there isn’t a social worker involved is because the CHC people are supposed to have 3-monthly reviews. We haven’t had one in four years. The only remedy is an official complaint to the CCG, and when they fail to act, a complaint to the ombudsman for health and social care. I’m not certain you’ll get a result there, but it is a better idea than hoping safeguarding will come to your aid. Or the CQC.
It may be our troubles are over, as on 1st April it seems funding will be taken up from Croydon by Surrey. We still intend to go for the petetion, because it’s just wrong what’s happening.
Hi Sally we seem to be powerless with no place to take a complaint in these situations, other than the ombudsman.
My son has a care manager still. She’s very helpful, much better than the social worker he had before. She’s very involved in his care. Comes to all annual college reviews and has arranged lots of support through college holidays and funds for activities. I’m shocked others don’t have this support.
Hi, I am currently fully funded chc. I received DLA before this. Middle rate care and high rate mobility. I still receive this but should I now be applying for the higher rate? Will I automatically get it or do I have to jump through hoops for it?
My son, 31, qualifies for CHC funding from Croydon NHS. He has had to live out of the borough since the age of eight due to lack of service provision within LBC. 10 months ago he had to move from a care home in Surrey to a supported living house in the same county. We had a letter from Croydon saying that because he had chosen to live outside the borough, his CHC cost would be transferred to Surrey.
This was something Surrey were never going to agree to and from a statutory position, in the “Who Pays?” guidelines, it seems pretty clear that it should still be Croydon.
When he arrived at the supported living place, he was made to complete a housing benefit claim, but this fell £40 per week short of the cost of the accommodation, and he now owes them over £1500, and is also having to pay for his own food, which he wasn’t before.
Croydon refuse to enter into any dialogue over this, and have ignored a complaint we made using the proper procedure.
It seems to me that they have transferred the majority of the accommodation cost to Surrey, and the balance to him, which seems to fall well outside what should have happened. Has anybody else been in this position? Looking at all the rules, Croydon are responsible for meeting 100% of his accommodation costs, period, on top of his staffing costs. I’m wondering if he should have made a claim for different benefits when he transferred addresses?
Any views or advice on this would be much appreciated. BTW, instead of the “seamless” transfer of the essential medical services he needs, they were all cancelled and 10 months later we are still trying to re-establish them. Surrey say it’s not their problem, Croydon say nothing.
My father recently had to move from his Flat to a general nursing home he had frequent falls at home he also required his meds nutrition and fluids recorded stringently.He still likes to go out in his mobility car but no more as his motability has been stopped which isn’t good and which will affect his mental well being greatly 🙁
Mum has vascular dementia and has been living in Nursing Home for almost a year while we await Elderly Mentally Infirm (EMI) Nursing Home bed.
Mum is, presently, fully funded by NHS Continuing Health Care (CHC) but I recently noticed that Attendance Allowance (AA) payments stopped in November 2017 without notification.
I called Department for Work and Pensions (DWP) and was informed that Mums AA has been suspended awaiting clarification of admissions date. However, when I contacted Nursing Home they stated that DWP had not made contact.
At the moment I’m unsure if AA has been cancelled, as I was told by DWP that it is “with decision maker”.
What are criteria for AA ?
Is it like CHC and nobody has a definition ?
I’m pretty certain that AA stops when NHS Continuing Healthcare (CHC) is awarded. I think someone who knows better than me has posted that further up the thread. The best thing you can do is to ensure you know the date on which your mother was awarded CHC and make sure the repayments (which will likely be required from your mother’s account) do not exceed that date.
Re Criteria for AA I think on the annual summary and advice of payment for the next year, and on the Gov.UK website the criteria are laid out, plus the need to inform DWP when there is a change of circumstances. I don’t think it mentions CHC award ( which helps to keep it secret!) , but it does mention entry into hospital, change of address or care home.
Thanks. That’s the impression I got from previous comments here. At least when I call DWP I’ll know what to expect and can begin organising Mums finances accordingly. They certainly don’t shout about NHS Continuing Healthcare from the roof tops.
Thank goodness for an informative forum such as this! It is a real help to us who have sick, vulnerable relatives, and we too in the process of being left vulnerable by not knowing which way to turn. My sister is about to be assessed tomorrow as to whether she will receive NHS Continuing Healthcare or Social Services funding. I really didn’t understand their clinical ‘jargon’ at all and felt quite ‘in the dark’ about it all, and left with so many questions that nobody seemed to answer. A BIG thank you to you all! kind regards, Jean
Thank you for your very kind words about the blog, Jean. I’m glad it’s helpful.
If my husband receives NHS Continuing Healthcare for nursing home, does his state pension still go into our joint account?
This is something I would also like to know
this is something i would also like to know
I can’t answer this exact question, but can tell you about family members in a similar situation, in case this helps. My in-laws each have their own Post Office account, into which their state pensions have always been paid. When my father-in-law went into a nursing home funded by NHS Continuing Healthcare, his state pension continued to be paid into his Post Office account, exactly as before. The NHS CHC made no difference.
Hi K
It is my belief that you did not have to pay back the money requested because the mistake was made by them after you had given them all the “Material Facts.” As I understand it, if they have all the evidence available, and they make a mistake, they can ask for the money to be repaid, but NOT demand it. You are out of the timescale for an ordinary Appeal, but you may be able to ask for a hearing based on “Exceptional Grounds.” This allows you to Appeal up to 13 months after their decision. Please do not underestimate the power of giving all the Material Facts. That can win a case in your favour if you can prove the concept. I hope this helps K. You can download one of their Appeal forms from the web. Please post back about how you are progressing. Regards:-Hughie.
My son is joint funded by both healthcare and Social Services (SS). He has been receiving ESA which is taken from him to pay towards his fees (£400). Today I received notification that he will receive EESA an addition amount and put in a support group and not expected to work. Will he be allowed to keep any if this additional money or will it all go on care home fees leaving a very young man on just 24.99 to live on? This amount is ridiculous. What is the point of the DWP giving him extra if it all goes back to SS. I also didn’t realise that I could claim DLA for him when he is home week. Would our council not then take more money from this payment too? Thanks
Did you get a reply on this as just going through it with my daughter? Thanks lynne
I haven’t been on this platform for months and have just come back and found your comments. My 22 year old son has been attending a residential college as a weekly boarder and our local authority has been taking Client Contribution from his ESA (£141.10 but it’s just increased to £145.35 since April) leaving him £24.90 per week. I totally agree with you, it’s such a small amount money a young person is allowed to keep! I hear the amount is exactly the same for everyone regardless their age. But what I found most unfair is that people whose care is fully funded by Continuing Health Care are allowed to keep all of their ESA. Another student at my son’s residential house is funded by CHC and not by his LA and he can go swimming, hydrotherapy, horse riding etc using his £145.35. It doesn’t make sense to me as all funding, whether by Local Authority or HNS, boils down to the tax payer’s money yet one has to make contribution whilst the other doesn’t. If the Government insist on this Client Contribution policy, the same should apply to people on CHC as well and they should also put money back into the NHS pot, who is desperately in need of money!
My son is going to move to a care home on 52 week placement soon and our social worker told me that his personal care component of PIP will stop. But here on this forum, some people are saying they get the money for the care component for the days the person comes home. I am going to bring him home every weekend but I wasn’t sure about this because to me it seemed as if we were using the public money ‘twice’. So I’ve just phoned and asked PIP (we were moved to PIP a few years ago) about this and I was told that we ‘can’ claim for the days I bring my son home. This is exactly what I’ve been doing for the past 3 years since my son started at the residential college as a weekly boarder. Each month I send back the form (or call them) telling them the dates he was at home and they pay us accordingly. So I just have to inform the name and address of the care home. This is a huge relief to me as I have to buy his pull-ups and I was worrying where I could find the money for them, since he will be left with only £24.90 pocket money each week!
So, to answer your question, yes, you can claim DLA for the days your son spends at home. Though I’m not sure if the ‘joint funding’ situation would make any difference…..I think it’s best to ring and ask DWP about this.
Hi,
My mum receives Continuing Healthcare in a care home and has done for the last two years, I have notified the benefits office that she should no longer receive disability living allowance ( I have notified them on the phone 4 times and in writing). They have paid it to her this year not monthly as the letter I received stated but at the end of the year they pay the whole lot in one go. I have left it in the bank account untouched because I don’t believe mum should receive this any longer. Any advice would be appreciated?! Thanks
Hi,can anyone answer this question?? I’ll try an explain it as best as i can. Young man 28,lives in a Residential care. Placement was previously funded by the local authority (LA). Out of his ESA he paid an assessed charge calculated by the LA directly to the Residential Care home which left him with a Personal Expense Allowance of £24.90 per week spends. He is now Fully Funded by ContinuingHealthcare (CHC), not LA. Should he still be paying a charge to the care home or not out of his ESA? Are the rules age related & dependent on which Benefits you are on? As it seems elderly people 65+ when Fully CHC funded do not pay a charge to care homes. Soo confusing :/
My friends daughter, 20, Continuing Healthcare (CHC) funded, lives at home with family and claims DLA high rate care & high rate mobility. Which is unaffected. Mums Cares Allowance also unaffected. If your son is claiming ESA placed in the Support Group-Contribution-based, this is also be unaffected.
Our son, 28, is now CHC funded lives in Residential care. (Different Rules for different setting.) Its a hell of a lot more complicated and confusing trying to get answers. That’s still on going. I will post here when I get definitive answers.
Hope this is of help. Good look. 🙂
My son is eighteen and in transition. What a nightmare. Will my son lose his PIP if he’s successful getting CHC enough though he lives at home?
My son is 33 and lives at home. He is fully funded by Continuing Healthcare (CHC) and still gets esa and pip. The benefits as far as I am aware are for living expenses, bills, outings etc. The CHC is for health care. So no he shouldn’t lose his PIP Lincoln:)
Hi all, your comments are very helpful! My 22 year old son is a leaver this July and we are currently deciding on the placement or he might live at home. He’s been receiving DLA (now PIP) higher rate on both components since he was about 8 years old, and he also receives ESA at enhanced rate since 2 years ago (I didn’t know he was eligible for ESA because nobody told me about it so he missed out on it for 3 years!). Our LA has been taking a big chunk of ‘Client Contribution’ from his ESA towards his care (he’s been attending a residential college) leaving him £24.99. I have never applied for NHS Continuing Healthcare (CHC) because nobody – Social worker nor our GP – ever suggested me to consider even though he would definitely qualify. As before, the social worker hasn’t mentioned CHC and she says if he goes into a full-time residential care home which will be fully funded by the LA, his PIP on both components will stop and he will continue to make Client Contribution out of his ESA. So I’ve got the impressions that ESA could continue even though there is zero chance of my son getting any kind of work. But when I spoke to ESA, they say it is likely to stop when my son goes into care home. He needs to spend around £200 per month on continence pads and I don’t know where I should get the money from if PIP would stop. Perhaps CHC would make more sense for this? I’m REALLY confused as to what to do! Help!
Hi Mica, First of all don’t worry about the cost of incontinence pads as these will be provided free of charge, regardless of whether or not your son is awarded NHS Continuing Healthcare (CHC). He won’t have to pay for them himself. Your son’s situation sounds very similar to mine so I hope I can help. My son (now 29) received higher rate DLA (both components) from the age of about 5, then enhanced rate ESA, and went to a residential college after leaving school. After 3 years in ‘education’, his college offered him a permanent place in a residential home and as he was happy there this is the option we chose. As a care home resident he continued to receive ESA of around £127 per week, but from this he had to pay our local authority (LA) a ‘client contribution’ of just over £100 per week towards his care, leaving him about £25 per month to live on. This was the situation for about 5 years until I stumbled upon the fact that he might be eligible for CHC – as in your case, nobody told me about it. I applied 18 months ago, there was a substantial delay in assessing him due to a shortage of nurse assessors in the area (plus disagreements over which healthcare professional should make the referral), but a year ago he was finally awarded CHC. This means that now his care costs are fully covered by the NHS and he no longer has to pay a ‘client contribution’. So he keeps his ESA and when he comes home for visits I claim higher rate DLA for him (switching to PIP) and Carer’s Allowance. I would definitely encourage you to apply for CHC and it sounds as if your son should sail through the initial ‘Checklist’ assessment. But a lot of severely disabled people do get turned down for CHC so it’s important to be very well prepared to fight your case.
Hi Gill,
Thank you so much for your reply. Yes, your case sounds almost identical to ours! My son was also funded by LA for 3 years in college which is coming to end. He receives ESA of £125.55 p/w. (this has gone up to £127.15 p/w from 1st April 2018 which is the same as your son’s.) My son has been a weekly boarder so his weekly client contribution was calculated as:(£125.55 – £24.90* the amount he’s allowed to keep) divided by 7 days x number of nights. The council originally tried to charge full 7 days a week even though they said they charge ‘per night’. So I argued that he was there overnight only 4 nights a week, Mon – Thur. They didn’t apologize for the mistake but they agreed with my argument! Anyway, your explanation is so encouraging that I have actually emailed our local CCG and requested the assessment. I hope I’ll hear from them soon.
……continued above
As I … [researched NHS Continuing Healthcare] … I was surprised to find that my son would meet almost all criteria. He has severe learning difficulties, epilepsy, autism and challenging behaviour. He can’t manage anything on his own and must be supervised 1:1 at all times. Previously with DLA, he was awarded indefinite and since he was transferred to PIP 2 years ago, I have been claiming for Personal care for the days he is at home and I receive carers allowance as I spend more than 38 hours a week looking after him. Fortunately, PIP didn’t take away his Motability but it will end if he goes into a residential care home I suspect, and the money for mobility component will go to the service provider . So I’m currently trying to find out how much it will cost me to buy the Motability car we have now. I’m still torn between keeping him at home and putting him in a full time residential care home because I don’t trust the level of care other people provide. I know he is much happier at home. But then I’m becoming more worried about his and my safety when he has seizures at home. Anyway, whichever I decide to go, he is definitely better off with CHC so, fingers crossed!
Before your son’s full assessment (Multi-Disciplinary Team Meeting – MDT), I would strongly advise you to have a good read of the information on this website, and study the Decision Support Tool for NHS Continuing Healthcare (CHC) that’s used in the assessment. I looked at each domain they assess the person for (Behaviour, Cognition, Psychological/Emotional, Communication, etc), read their description of each level of need, then decided whether I felt my son’s needs were Priority, Severe, High, etc. I made a list of reasons, incidents and evidence to back up my case and took them to the meeting so I would be able to argue my case if the nurse assessor tried to downplay my son’s difficulties. The care home manager supported me with evidence of challenging situations they’d had to deal with, care records, medical appointments, etc. In the event our MDT meeting went well and although we disagreed with the nurse assessor on a couple of levels of need, our views were recorded and CHC was awarded without the fight I had expected. It will definitely help your case if your social worker is supportive and if your son’s college are willing to support you with evidence of his needs. Your son can be referred for a CHC assessment by his GP or social worker, but if you don’t find professionals helpful or if it’s taking too long you can refer him yourself. In our case things were further complicated by the fact that my son lives in a different county from the family home, so there was confusion over whether he needed to be referred by a professional in our county or the county where he lived. In the end I found an email address for the CCG (Clinical Commissioning Group) in the area where he lived and simply sent them an email summarising his disabilities and requesting an assessment for CHC. That got the ball rolling and they then invited all the necessary health care and social care professionals to take part. Good luck!
Hi Gill
Thank you very much for all your tips and suggestions! Really appreciated. I saw these ‘priority’, ‘severe’ etc on the ‘Checklist’, and unfortunately my son scores either priority or severe on many points. Whenever I’m doing forms or things like this, it really makes me realise just how severe my son is. sigh…. There are stack of all sorts of evidence or incidents which can be used to show his difficulties so I feel quite optimistic in getting somewhere with this assessment.
As for the continence pads, … [our area]…has stopped providing ‘free’ pull-ups and nappies for special needs since Dec. 2013. Until then my son used to get pullups all free from HNS but they decided to make the system ‘fair for all’ (heard that all before!) and they tried to give us something like 5 washable pants per year and 3 sanitary pads looking pads which to be used with the pants per day. 3 sanitary pads per day??!! They were really a joke. There is no sticky tape so it just sits inside the pants so they are completely useless at night, and when he was in toilet and pull down the pants, the pad would fall down into the toilet. It’s just not suitable for someone with severe learning difficulties. I contacted the pull-ups supplier and asked if I could buy them at the same rate as the NHS. They said “Oh, no, we can’t do that” and expected me to pay the full retail price. So I’ve been buying better pull-ups … [online]… Each pull-up costs almost £1 and although I’m always careful, my son usually needs 5 – 6 pull-ups per day. When [our] NHS trust stopped providing free continence pants, a mum of a boy in a wheelchair who used to go to the same school as my son told me that they still received nappies but… reduced 2 nappies per day! So they started buying by themselves too. The system is so wrong!
The effect receiving NHS Continuing Healthcare (CHC) will have on other benefits will depend on where you receive your care. Care at Home – Social Security Benefits shouldn’t be affected nor your pensions, so you will still be able to claim AA or DLA as long as you meet the eligibility criteria for these benefits. However any benefits which are based on local social services paying for the care might be affected if they stop being responsible for your care when you receive NHS Continuing Healthcare. Living in a Care Home – State pensions not affected (nor any private or occupational ones) but you will lose Attendance Allowance or DLA after 28 days. The mobility component of your PIP or DLA will continue if you’re in a care home, but stops if you’re in a nursing home. These seem to be quite consistent throughout the advice sites. My son lives at home has full funded CHC and gets full enhanced rate pip and esa. Hope this helps
can you receive fully funded chc and income related essa living at home and high care and high mobility
Hi Alison – Yes you can receive CHC regardless of the setting of care. Kind regards
Further to my comments above, I should clarify that my son has always continued to receive the mobility component of DLA while living in a care home, both before and after being awarded NHS Continuing Healthcare. As Alison says, the mobility component of DLA or PIP continues for residents of care homes, but not nursing homes. When my son comes home to visit the family it is the care component of DLA that I claim for him.
Hi Mica, Sounds like your son has a very good case for getting NHS Continuing Healthcare (CHC), so fingers crossed. Regarding the mobility component of PIP, I think your son will continue to receive this if he goes into a residential care home and I don’t think you’d have to pay it to the care provider. I don’t know about the Motability car though, as I’d already bought mine before my son left home, but I imagine you’d have to return it. My son gets £59.75 per week DLA mobility component and has always been allowed to keep this – when he was at college funded by the local authority (LA), and also while living in a residential care home, both before and after he was awarded CHC funding. We’ve never been required to pass this on to the service provider, LA or anyone else. As I understand it, the rule is that you get to keep the mobility component of DLA/PIP if you live in a residential care home, but not if you live in a nursing home. Not sure of the logic behind this rule. If the care home has qualified nursing staff who administer medication to your son, this counts as a nursing home, but if he is given medication by trained care workers (without nursing qualifications), it counts as a residential care home. At my son’s care home, it’s trained (but not qualified) care workers who administer emergency epilepsy medication, so it counts as a care home and the residents keep their mobility money. So you’d need to check whether medication would be administered by qualified nurses or just trained care staff at any home you looked at. As regards having to buy your own incontinence products, I’m shocked and outraged on your behalf! How are profoundly disabled people who have never worked, will never be able to work and have no savings meant to pay for these products?! In your position I’d be tempted to raise this situation with my MP as it’s completely unreasonable – and illustrate the problem with some nice photos of wet/soiled clothes and bedding! Or bring a bag of urine-soaked clothing to the MP’s surgery…
thank you alison, can essa income related be paid with fully funded care package at home
My husband has been in a Neuro Rehab centre for 2 years, funded by NHS Continuing Heathcare as he has a tracheostomy. Although his DLA was indefinite both the care & mobility (high level) were stopped, despite me twice challenging this. I just wanted to check if this is actually correct as some residents there do still get the mobility component whilst funded by NHS Continuing Healthcare. I’m looking at getting him home soon and wondered if this situation would change?
I have a husband also with track. The rehab unit that he is currently in are trying to get rid of him to any tracki care home wherever. He doesn’t feel ready to move & eventually will come home but not ready yet. I would prefer he stay where he is. How did you manage to stay in your rehab & get Continuing Healthcare to pay?
My sister is in hospital following broken hip, she has advanced dementia. The social worker is saying in my sister’s best interests she should go into a nursing home and she is applying for CHC, meanwhile we are to check out nursing homes. A lot of homes are mentioning top up fees, could anyone advise me who pays these fees, as if it is for my brother-in-law to pay he would be financially strapped. Also does my sisters pension, as and private pension get taken from her, or are these monies added together and paid to the nursing home?? Any advise appreciated
Top up fees are paid by a third party ie family members. The way i understand Continuing Healthcare (CHC) funding, your sister will keep her pensions, however beware if it’s Funded Nursing Care – this is a weekly payment made to the home – the rest would be covered by the client.
As I believe it to be if Continuing Healthcare (CHC) agree to fund your care then it cannot by law be topped up. CHC must cover ALL your health and social needs costs. Ask them how they can ask for top up fees to CHC funding when its clear its against the law to do so. Its basically like you going in hospital and being asked to pay extra to top up your treatment.
HI Gill. Do you happen to know if the same applies if the young person living in a residential care home if partly funded by the Local authority and Continuing Healthcare ??
Hi Ann. I’m not certain, but I would imagine so. It’s very difficult to find anyone to answer questions about this situation because when you ring up about benefits, the person you speak to tends to only know about the particular benefit they deal with, but nothing more complex. I can’t remember which benefits number I rang in the end, but it might have been the Disability Service Centre on 0345 605 6055. I explained what I wanted to know and the person I spoke to didn’t know the answer themselves, but offered to get someone more knowledgeable to call me back. I received a call later in the day from someone more senior (perhaps from another office) who was obviously well informed about the impact of CHC on benefits. I was able to fire all my questions at her and she answered clearly and confidently. I’d give that a try, if I were you. If you manage to find out the answer, please post it here as I’m sure it will be useful to others!
In regard to this and Gill is right about DLA my daughter is in a nursing home. Though she qualifies for DLA both mobility and care and told it was indefinite they can’t pay her any of it as she is in a nursing home.
My 94 year old mother suffers from dementia and has been in hospital for 8 weeks during which time her condition has deteriorated dramatically and can no longer return home. She has just been refused CHC funding but I will be appealing although she was offered a contribution of £156 per week. During the assessment, I asked if her Attendance allowance would be affected by this contribution and no-one was able to tell me! I later found out that she would be losing her attendance allowance which would now be at the higher level of £82.30 so the net contribution is actually £73.70 – given that she was already entitled to £55.10 what was actually being offered was a net figure of £18.60! I wish I had known this during the assessment.
Connie – (1) I infer that the £156 pw is for Funded Nursing Care (“FNC”) when your mum goes into a care home. This is paid by the CCG to the care home for the provision of nursing services. The nursing services fall within S3(1)(c) NHS Act 2006. Have you read the article “Funded Nursing Care: Decisions may be wrong”? This article argues that the secondary legislation – the Standing Rules – is being wrongly interpreted by the authorities and that, on a proper interpretation, anyone found to require the provision of registered nursing services (which prompts the payment of FNC) is eligible for NHS continuing care; (2) That said, payment of Attendance Allowance (“AA”) is unaffected by the so called FNC “contribution”. But the payment of AA would be affected if the local authority is, wholly or partly, contributing towards her care home accommodation costs. It follows from this that if your mum is “self funding” – i.e. she is paying all her accommodation costs – then she is entitled to payment of AA.
Thank you so much for the wealth of information in Angela’s book. We have just embarked on our journey in applying for Continuing Healthcare (CHC) for my Mum and as we progress we are finding your advice invaluable.
My Mum has been in a nursing home for 12 months. She is 72 and diagnosed with Alzheimer’s 4 years ago and of late Parkinsonism. She has deteriorated so much that now she is mainly in bed., totally immobile, unable to feed herself and has cognitive deterioration. She does not recognise us and her only form of communication is to mumble incoherently.
Mum has been assessed by the CHC team and. Even denied funding. The assessment meeting in May was attended by a member of the CHC team, a social worker and for the purpose of assessing her skin only the presence of a nurse from the nursing home. We have appealed and are waiting for a date for another assessment. Mums health has deteriorated since May.
Admidst all this process we have lost our dad who was at home with dementia. He fell and broke his hip and never recovered from the operation.
This has put mum in a better financial position however (due to now being a sole home owner) we have not as yet volunteered this information until we have a decision regarding CHC. Mum is partially funded at present.
Have you any advice for our next stage. Many thanks.
change your dads will by dead of variation so you get his share if you can? depends on how the house was owned, not an expert but worth looking at
Thanks Gary will have a look into it. Anything advice is welcome. Regards
Thank you for your kind feedback on the book, Elaine. Yes, your mum’s financial position has no bearing on the CHC assessment process, and no one should ask about that until the CHC process is complete. Even then you don’t have to disclose anything; you can just decide to pay – IF she’s not eligible for CHC. Make sure you pick apart all assessment notes and decisions to highlight any flaws, omissions, inaccuracies and misleading statements or language. This may also help you: http://caretobedifferent.co.uk/appealing-a-continuing-care-funding-decision/
Hi All. We have appealed against a decision in April to deny my mother Continuing Healthcare (CHC) funding. The home say they are supportive but have found the care notes wanting. The CCG have today reviewed my mothers notes again and have suggested the home completes a four week detailed report so they can establish the extent of my mothers needs , complexity/intensity etc. And after that make a decision whether a new Decision Support Tool is needed.
After her notes were reviewed we were allowed a short meeting with the CCG representative. I stated that my mother had deteriorated since April and attempted to discuss the health care domains. My mothers cognitive state was rated severe and yet her physiological need moderate. When I challenged this the CCG representative stated that this would mean a double rating and this isnt something they do. In other words because she was rated severe in cognition it means they couldn’t rate her high in psychological needs. I question who’s agenda we are on here!!!
Also within the communication domain she was rated moderate because the staff can tell by my mothers facial expressions that she is in pain.
In August they did a similar review of notes and noted that my mothers mobility had improved due to an error by the home. The home had noted in error that on transfer my mother could weight bare. She had actually been hoisted for some months due her mobility declining. The Ccg today stated that this was a matter that we should take up with the home and they can only go by the evidence in the notes.
This has just given us more imputus to pursue the appeal but would welcome and views / comments.
Regards
I had the same problem with the MDT carrying out the assessment saying a condition cant be used in two domains , I insisted that it could and had to show her in the DST guidance notes where it says so , you must get a copy of the guidance notes and the DST showing the domains and examples of conditions that warrant each sevrity , they are there to play it down and you must prepare yourself with evidence to prove your case
Gary
Thanks Gary. We are awaiting an appeal so will do a bit more work around that issue. Regards
I’ll give “them” the benefit of the doubt. In my experience, some are there to play it down and many more are poorly trained , intellectually lazy and happy to offer “We’ve always done it this way” as the best reason for ignoring the National Framework and guidance notes. I doubt many are even aware of the guidance notes and examples. On a few occasions I’ve wondered if we’ve become a free training facility for the NHS assessors and LA staff. Just a few want to see some sort of fair play – but they are rare!
Hi Elaine
It appears that the CCG you are up against do not know their own National Framework. It is just a pity you do not have this person’s misguided reasoning on paper. You could have produced it at the Independent Review Panel (IRP) stage. Keep fighting. You have an advantage inasmuch as you have more knowledge that they have regarding their own tools. The hardest part is getting through all the initial stages and barriers they persistently throw at you before getting to the IRP stage. Keep strong, keep pushing and bide your time. Your day will hopefully come.
Thank you I will call DWP again regarding this .
Julie
My profoundly disabled 27-year-old son lives in a residential care home currently funded partly by Social Services and towards which he pays £400 per month from his disability benefits. Before applying for NHS Continuing Healthcare funding (for which he may be eligible on the grounds of his challenging behaviour) I wanted to find out what impact this would have on his benefits. He currently receives DLA Mobility Component, and when he comes home to stay with the family he also gets DLA Care Component (Higher Rate). It has today been confirmed to me that if he is awarded NHS Continuing Healthcare funding, he will continue to get DLA Mobility Component because he lives in a care home where there are no qualified nurses or medically trained staff and he receives no nursing/medical care. Apparently if he lived in a nursing home or a care home where he received any medical treatment from qualified staff, he would not get DLA Mobility Component. He will also still be able to claim DLA Care Component for the periods he spends at home being looked after by the family. Our situation is unusual as most people who qualify for CHC are elderly and probably need medical/nursing care, but I hope this information might be useful to families with younger disabled members.
Thanks very much for the information, Gill.
Hi Gill
Your situation is very similar to our son’s. He is now fully Continuing Healthcare (CHC) funded, living in a residential care home.
To claim for periods spent at home as the parent/carer you will need to remain as the appointee for DWP Benefits.
He will still get the Mobility Component in a residential care home, regardless if you are the appointee or not.
ESA is not affected. (I’m assuming he gets ESA placed in the support group).
Your son will no longer pay a charge to the residential care home, when fully CHC funded.
More spending money for him, but if saving go above £6000 Benefits are affected/stopped.
The rules are very complicated, my advice to any parent/carer is always seek advice. Easier said than done I know. Hope this is of some help to other parent/carers of younger adults.
Hi Ann
Thank you very much for your clear explanation of the benefits situation for a young person in a residential care home – you’ve confirmed what I thought to be the case. We should be having our son’s Continuing Healthcare assessment in the next few weeks (after a long wait due to a shortage of trained nurse assessors in our area) and are bracing ourselves to do battle over interpretation of the eligibility rules. The descriptions of the different levels of need seem to have been written with elderly dementia patients in mind and don’t quite fit young people with learning disabilities. In fact the criteria don’t really fit anybody as every disabled person is different. No doubt they will decide our son just falls short of the required level of need, but we will argue our case. Fingers crossed!
Hi Ann
Thank you very much for your advice which I find very encouraging! It seems to me that I should apply for NHS Continuing Healthcare (CHC) for my 22 year old son who probably will go into a residential care home. I have watched the NHS video on YouTube explaining what CHC is and I found that my son would qualify almost all of the criteria (unfortunately). This film actually says that when the care is jointly funded by local authority and CHC, the person would probably pay some contribution towards his/her care. So although your son no longer has to pay a charge towards his care after receiving CHC, maybe the system has now been changed and everybody will be asked to pay something?
Thank you so much for posting that. My son gets higher rate mobility allowance and only by chance went into supported living rather than a care home. The latter would only have been an interim placement, but he still would have needed his car. I am assuming if he requires district nursing services in an assisted living house, all is well? Hope so.
I’ll make a separate post about EESA and living expenses.
Hi Gill
That’s interesting. So, what our social worker told me recently is true. The residential care homes my son might be going to, all have staff trained to administer his daily medication and his emergency medicine in the event where he has prolonged seizures. Our social worker says if he goes into one of those homes, the money from Mobility component of PIP will need to go to the care home. I still can’t see the logic though. What’s medical needs got to do with Mobility component????
Thanks for all your comments so far.
Pension income should continue regardless of CHC, because CHC has nothing to do with a person’s income, savings or assets. Page 31 of this AgeUK Factsheet may help regarding Pension Credits and other benefits: http://www.ageuk.org.uk/Documents/EN-GB/Factsheets/FS20_NHS_continuing_healthcare_and_NHS-funded_nursing_care_fcs.pdf?dtrk=true
Hi, Relatives AA stopped when went in to nursing home. A person from DWP saw us and said if money they had did not reach £10,00 they would still get some pension credit, which they do. They did not own house etc. before going in to home. In reply to K though another family member in nursing home but not getting CHC had to pay back pension credit because they realised they had paid them too much going back 2 or 3 years, even though they knew their situation, and even saw person in the home.
My father is self funding in a care home in Scotland. He had his Attendance Allowance stopped and does not qualify for CHC as Scotland has changed this. He has had to sell his house. I think it is grossly unfair.
Thanks I’m sure it’s because mum is in a residential home. Has anyone else come across this please?
CHC Eligibility can be applied in residential homes
My dad is receiving CHC at home and is still having AA at higher rate which from my understanding is correct.
I am trying to get my partner home who has recently been assessed as needing Continuing Healthcare (CHC) but was told that CHC could not be provided at home only care settings. My partner has dementia and they are trying to move her to an area which is over 60 miles away. Can you advise as to what type of care you receive. Many thanks, Wendy
Wendy – CHC is available for care at home as well as in a care home. We hear many reports from families who have been told that CHC is only available in care homes. It’s not true, and many families suspect there is a financial motive behind this. This may help: http://caretobedifferent.co.uk/where-can-a-person-receive-nhs-continuing-healthcare-funding/
Can someone please clarify – my mum has very recently been granted NHS Continuing Healthcare (CHC) funding. I’m in a dilemma to accept or reject. Will she lose her higher rate Attendance Allowance and myself lose Carers Allowance?
Can I refuse CHC funding?
Hi my mum is in a residential home and receiving Continuing Healthcare (CHC).. Her DLA has all been stopped. Thanks Julie
Hi again after all your advice I contacted my MP…And mums DLA has been reinstated from march 2016 when it was stopped, so thanks very much guys because after contacting DWP twice myself and dial contacting them and being told mum was not entitled to the mobility element I had more or less accepted that was the ruling. But if you are in a residential home you can still get the mobility element….So thanks again and don’t always take the first answer your given . Julie
That’s really good news, Julie.
Jenny
You are correct AA is paid if they are self funding care home fees, but my Mother was not self funding when she first entered a care home.
Totally confusing. My mother was receiving pension credit and AA. I informed the departments that she was going into care. Not CHC as it was and is still in process (despite the fact that she died August 2015). They re-addressed the amount paid. Then 2 weeks following her death & completion of Probate I (as executor)received a letter stating that the tax office had provide copies of Probate and they were legally entitled to review all payments made since 2005 made, even if I had received in writing previously that no payments were owed. Needless to say after numerous trips to the bank and loads of enquiries, 75 sheets of paper & 3 letters from me they concluded that I had to pay £6,500 as they had made mistakes. Being totally confused by their brief explanation and stressed by the whole situation I paid up. It so galls me as I have always informed the benefits team(s) what was happening during my mothers sickness.
The whole thing has been a nightmare from start to finish. A real battle to get Continuing Health Care funding with every effort made to exclude and changes made to agreed scoring after various meetings. We had to appeal the decision and it went straight through when we got an independent assessment undertaken. Now we have just been re assessed and are awaiting for the results. It is clear every effort is being made to exclude my parent from qualifying – the reality being that he is significantly deteriorated since first qualifying. We fully expect to have to get another independent report by the same specialist which will show he is worse ( by what miracle would a 94 year old who suffered a catastrophic stroke improve?). No other funding is received apart from Pension. I’m not aware of being able to qualify for anything else, we have had no meaningful support from any advisory service, the social worker we first had was beyond useless and seemed to know less than we did.
Chris, I was specifically told that if relative was self funding in a care home AA could continue. They wanted repayment of AA for time in hospital and rehabilitation as that was NHS funded. On that logic, I can see why they want AA to stop when CHC is paid, but not when self funding – but I may well be wrong!
Jenny
You are correct. AA is only payable for self funders, otherwise it stops after being in a care home after 28 days.
I applied for Continuing Healthcare (CHC) for my dad on 23rd December 2015, I was told there was a 6 month waiting list before they would assess but here we are, 1st November tomorrow, and despite chasing them up i’ve heard nothing. Are there any maximum timescales? I’m also interested in Fiona’s comment that she got CHC on appeal after commissioning an independent assessment. How do I go about that? I’m concerned because i’ve heard virtually no one succeeds in getting CHC in our area. Also does it mean the care home gets paid less or more? I moved my dad to his home 3 years ago. They only had a shared room at £550 per month but told me he could have his own room when one was free at £750. However once he was in the home they then said the fees were going up and the single room was £1000 per week, which I have paid as dad is settled there, but there appears to be no way to check whether they are charging everyone fairly or not. They seem able to charge what they want. Final thought – dad was refused CHC when in hospital 3 years ago just before going to the nursing home. But the hospital has lost all the records, and I was never given anything. Any implications regarding CHC. I’m also concerned that as far as the home’s records are concerned they really downplay behaviour etc., as they have residents worse than my dad, but a lot of info is just not getting written up. Is the answer an independent assessment, what are the costs and are they recoverable? Dad was a teacher, a single parent and not wealthy. All of his avings and two thirds of his house sale money has now gone. Judy
Judy – that delay sounds whole unacceptable. The whole point of a CHC assessment is to determine who is legally responsible for paying for care. At this moment that decision hasn’t been made, and so you could try sending all care invoices to the NHS for payment. (Be mindful of what impact that may have on quality of care though.) Some families do forward invoices to the NHS in that way. Also, you may want to write to the Head of Adult Care at the local authority (LA). If your dad is not receiving CHC at the moment then he is, by default, a local authority responsibility . However, if his care needs are actually beyond the LA’s legal remit, the local authority is currently in an illegal position. You may find they can put pressure on the NHS from their side. Care homes generally get paid less via CHC than they do from self-funders. It’s a clear conflict of interests and, as a result, not all care homes seem willing to help families secure CHC. If you’re concerned about the quality of the care notes at the care home, be sure to kick up a fuss – as these notes are as much about a person’s safety and the ability of staff to deliver the correct care as they are about CHC. Be sure to let the CHC assessors know that the care notes are inadequate. CHC aside, make sure your dad’s money does not go below £23,250: http://caretobedifferent.co.uk/paying-care-home-fees/savings-thresholds/
My Mother’s Attendance Allowance was stopped 28 days after going into a Care Home and that was before she received CHC. State Pension and Pension Credit are still being paid, i.e. before and after CHC was awarded. I don’t ever recall the Dept of Health asking the question “who is paying the care home fees?” I don’think it is relevant whether they receive CHC or not. Pension Credit is calculated on the savings amount at that particular time. If your relative’s savings are reducing on a constant monthly basis the Dept of Health should recalculate the amount paid as pension credit regularly. If the savings are increasing then I would only notify them each April.
My relative was awarded Continuing Healthcare (CHC), but it wasn’t actually paid to the Care home for many months after award. I didn’t stop the AA (at higher rate) the relative received until I was certain the money was being paid and payments were up to date. I’m wondering whether AA should be repaid if we are successful in any retrospective award?
Jenny – quite possibly, yes. You may find that AA is deducted from any retrospective refund (or needs to be repaid).