Advice needed on Care Home Funding

Discussion in 'Younger people with dementia and their carers' started by Westie, Dec 20, 2007.

  1. Westie

    Westie Registered User

    I know this topic has been aired many times, but wonder if anyone has any specific experience regarding social services funding for someone who is under 65, has dependant children and is still in receipt of a salary – albeit a vastly reduced one.

    I am still trying to find a suitable home for Peter, my husband. This is proving to be very, very difficult as I feared. He has FTD, is very fit & active and constantly absconds from the assessment unit he is still at by climbing over the 6 foot security fence. His nursing needs assessment has resulted in him being 2 points short of needing nursing care, so social services have just said that all he needs is a residential home! No one will consider taking him with his history and I haven’t found any yet that I consider remotely suitable for him. But that really is a topic for a separate thread – my main concern now is how to pay for Peter’s care.

    Our LA will fund up to £425 per week and I understand that homes above that threshold will be subject to top up fees. There are no homes in our area at those rates (Croydon) and nursing care is at least double that rate, but there is a possibility that Peter’s family can cover the top up which is great. MY problem is that SW has stated categorically that they will take 50% of Peter’s income as they are funding his care. On top of losing DLA & Carer’s Allowance that leaves me in a totally unviable position. Currently a family member is helping me meet my huge mortgage repayments and I have no idea at all how I can cope with a further loss of income. Peter’s salary was always used to support his family and home – my earnings were used to supplement luxuries like holidays. My work is now essential and all luxuries have gone – we are just existing.

    Makes Social Services ‘help’ pitiful when you work out the figures. They pay £1700 per month, but deduct £1500 from me by way of stopped benefits & salary. I am considering arranging for Peter’s pension to be paid early to help cash flow, but SW has told me they will then have that as well!!!!! I’m seriously wondering if I would be better off living in a tiny property, paying off the mortgage and using left over equity to buy a care annuity & leaving SS out of it. But initial enquiries show I can’t afford that either.

    SW is adamant there is no room for negotiation about this. She confirmed they couldn’t make me sell the house BUT did indicate that if I couldn’t afford to stay here then perhaps I should make the decision to move to smaller accommodation.

    Any advice out there – anyone challenged their LA over this?

    This has taken over as my main worry now. Can’t sleep, eat or function properly until I know how I am going to live.

    Sorry for such a long post.


    P.S. Have formal discharge meeting for Peter at 11 today. Goodness knows what will be said as there is no where for him to go and he is bed blocking. CPN urges me to stand firm as they will try and force me to take him home.
  2. christine_batch

    christine_batch Registered User

    Jul 31, 2007
    Dear Mary-Ann,
    My husband was diagnoised at the age of 58 with A.D. We have a mortgage.
    I will list the following things that I have gone through and hope it helps.
    There is a form you get from the Local Authorities whereby it is to do with the Mental Health Issue and our Doctor signed it - Less Council Tax.
    On Care Home - The Local Authorities have a list of all places within your Area. It is a case of checking which one you want. Please don't let them pressurise you into their choice.
    D.L.A. Motobility Component was taken away but let Peter with £160.oo per month.
    As for Pension - You are entitled as his spouse to half of Pension.
    When I was given a bill for nearly £800 per month top up fee, I wrote to Local Authorities and told them I could not pay my mortgage and Care Home Fees - The Care Home told me not to worry for the first 3 months as I had enough on my plate and I am disabled as well. Then I received a letter from L.A. halfing the bill, which is exactly what the Care Home had told me they do.
    t present I am going through the Continuing Health Care stage and my mortgage Company gave me a grace period on my mortgage - they were so understanding. Having to arrange an overdraft to pay care home, is herrendous and they were the ones who placed my husband in E.M.I. Unit.
    If you ring Alzheimer's Head Office and ask to speak to someone - they are absolutely brillaint.
    Have you looked at the fact sheets on the main page ? Sometime later, other people will come on line and offer help but do try and get on to the Benefit People for advice as well.
    Good luck with your 11 o/clock appointment.
    Just had another thought - Does your husband have an insurance that has a clause in it if he cannot work ? If so, Alzheimer's comes under we will pay out if....list certain illness and Peter did get money from that.
    I wish you all the best. Christine
  3. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Dear Mary-Ann

    I'm sorry I can't help with your problem, I've no experience of this, though I know how hard it is for people in your situation.

    I just wanted to wish you luck for your appointment.
  4. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    #4 Grannie G, Dec 20, 2007
    Last edited: Dec 20, 2007
    Dear Mary- Ann

    I have no idea how you can be helped but as a wife with under age children I do know [I hope] you cannot be forced to sell the family home to fund care. This is the ruling for those over 65, and must surely be the same for those under 65, even more so, with school age children at home.

    Please don`t allow anyone to tread on you until you have had some legal and financial advice.

    Phone the AS Helpline, 0845 300 0336 8 30 a.m. -6.30 pm

    Contact the CAB (external link)

    See a Solicitor. I believe you can get 30 minutes free time.

    Hope this is of some help.

    Love xx
  5. annesharlie

    annesharlie Registered User

    Oh Mary-Ann

    I haven't visited this site for ages and just felt ill when I read your post. I'm sorry, being Canadian, I can't help with how the system works in the UK, but wanted to send you love and support from here. It is so unfair that on top of all you have to handle, you are having to fight for every cent and every bit of support. Hope the meeting goes smoothly. Stand firm and don't take him home, I remember how very very difficult that was for you. From what you've written, he's more settled now anyway, even at the assessment unit.

  6. jackie1

    jackie1 Registered User

    Jun 6, 2007
    Hi Mary-Ann

    The only answer is to fight them all the way. We've not got to the care home bit but I've already had a fight with them and have it in writing that we will be treated as an extrodinary case.

    The problem is that their guildline make no provision for dependant children. I suggest the following, they are in no particular order. On an aside I have also been told that due to John's age his condition should not be treated as a social need and therefore we should be entitled to continuous care (i.e. paid for)

    Write to your MP (i'll email you what I sent you may be able to use it with a few changes
    Ring Advocacy Service 0845 300 0336
    Ring Alzheimers Society
    Does Peter get any free legal advise through work or do you have a bank acount with that as an extra

    Worst case take your children with you and all your bills to Social Services and ask them how you are expected to manage!

    Take care
  7. jackie1

    jackie1 Registered User

    Jun 6, 2007
    Also, don't sell unless you really have to as I believe that SS can try and claim half (Peter's part of the equity - I could be wrong but please do check this)
  8. Westie

    Westie Registered User

    Thank you

    Many thanks for your replies and support.

    Christine - I arranged the Council Tax disregard earlier this year, after a tip from another member, but thanks for highlighting it. Peter doesn't receive a pension at all, just a 50% salary and my argument is that I really need all of that just to keep our heads above water. Leaving me with half of that is unthinkable. Peter never spent 50% of his income on himself - probably more like 1%!! The rest went into the family 'pot'. No - we don't have critical illness cover on our mortgage. With hindsight................

    I am speaking to someone from AS today for more specific advice on finances so am hoping that will be helpful.

    At the meeting it was made clear that Peter must be discharged. January 10th has been set as his discharge date, even though no where has been arranged. I've been told he will just have to go to the place I have the fewest reservations about and that he can be moved from there to another place if it was needed. After discussing the difficulties I've had finding anywhere suitable, the consultant has now changed his mind about what is needed & now is suggesting an EMI home. Needs assessment is being re written as present one done 10 weeks ago and P changes almost daily.

    So I have 3 weeks to find somewhere with NO suggestions from them and trying to fit in Christmas&New Year in between. Also the children are now on holidays but looks like most of that time will be spent ringing or visiting homes - none of which I can afford.

    One tiny glimmer of hope regarding the finances emerged. Subject came up about Peter's income and his consultant had a real go at the SW and other staff. Although nothing to do with him normally, he told them to get this sorted out NOW. He started quoting the children's act and Peter's duty of care towards his children. Lots of stunned faces and 2 hours later I have an appointment arranged with the Director of Finance for the Local Authority to discuss Peter's unique position. This isn't until Jan 3rd so only gives me a week until discharge day but I'm hoping he will listen to me. Lots to prepare.

    If I'm still not getting any answers then the next step will be my MP. Trouble is this will all take time, and I don't know what will happen to P while this is going on. I'm afraid he will just be placed anywhere that has a bed.

    One final point - following the new Health Act in October, Peter definitely doesn't qualify for continuing care at this stage. Possibly later on, but for now - not a chance.

    Thanks for listening. I've got another difficult day today as working all morning, need to get yet more financial details to the SW by lunchtime and it is my daughters end of term carol service in church this afternoon. She is doing a solo recorder piece and singing so how I get through that in one piece I don't know. Just thinking about it brings tears to my eyes.

    Love Mary-Ann
  9. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Hi Mary-Ann

    Your situation would always be dreadful, but it takes on a whole new depth at this time of year, because everyone is so hard to get in touch with.

    Sounds like your consultant deserves a medal for making them sit up and listen.

    If an EMI placement is needed, and there are not that many free places around, then I don't think they would be able to do anything other than keep him where he is. They tried the 'bed-blocking' line with us, and we argued the case. No place became available for nearly 4 months, so she remained at the assessment centre for that period.

    best wishes
    Is anyone helping you in providing details of local EMI facilities, or are you having to search on your own?
  10. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Dear Mary-Ann, it brings tears to my eyes too, just reading your post. Christmas is a sad time for so many of us, but your problems are so overwhelming, I think you're wonderful to be able to hold it together as well as you do.

    I agree with Bruce, I don't think you should panic about the discharge date. When John was in hospital, the date was moved so many times, and it sounds as if the consultant understands your problems.

    I was told that a projected discharge date has to be set immediately on admission, butthis can be moved forward every week according to circumstances. If there is no suitable place for your husband, I don't think they can discharge him.

    I'm glad there is light at the end of the tunnel regarding finances, I hope you manage to get it sorted. It's a pity it's not till Jan 3, but these people have to have their holidays, don't they!:eek:

    I hope you enjoy the carol sevice, you'll be so proud of your daughter, and no-one minds a few tears.

  11. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Dear Mary-Ann

    What a heartbreaking situation for you. I so wish I could offer more than `virtual` support.

    Your consultant is a gem. I do hope his words hold weight and will be taken on board. I also hope you will get constructive advice from the AS.

    Take plenty of tissues to the Carol Service and be proud of your daughter.

    Love xx
  12. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    Dear Mary-Ann

    I'm really just echoing what Bruce, Hazel and Sylvia has said. Well done to the consultant for laying it on the line, boo to the social worker for subjecting you to this worry, particularly at htis time of the year.

    I know it's just words, but please try not to worry about this (either the money or the discharge date) over the holiday period, because you're not going to be able to much about it anyway. Can I also remind you about something? They may say they will only pay £425 towards the residential home but if the only homes that are available that fit his needs are more expensive than that, they have to cough up the extra. Also, is there anyone (family member or professional) that can go with you when you have that meeting with the finance director? Ideally it would be a professional who has experience in the field, but even someone who can be a second set of ears and eyes would be useful.

    Finally, if you want a little light reading (hollow laughter) the bible that social services has to go by is CRAG (charging for residential accomodation guidelines). You can read it here.

  13. Westie

    Westie Registered User

    Thanks again to you all. Made it through the Carol Service - it was really lovely and N was brilliant. Had a few tears, of course, but wouldn't have missed it for the world. Took her to see a friends pony afterwards which she loved so, all in all, a 'happy' day. Didn't visit Peter but I'm sure he would have understood had he been able to.

    Couldn't find a slot to drive over and deliver documents to the SW and suddenly realised I could fax them from work. Rang her to get the number - guess what? Oh, she's on holiday today!!! Why on earth am I running myself into the ground trying to meet their deadlines??

    Jennifer, thanks for the light reading! No, seriously, there is some very useful information in there. One of Peter's brothers will come with me to the financial meting in support. Before I had children, I worked for a Bank where the L Authority maintains their accounts. Ironically, I was then responsible for liaising with the finance department about how much we would charge them each quarter. How times have changed.

    Bruce, as I was directed towards yellow pages to find the number for neighbouring borough's social services departments, I feel very much on my own with regard to finding a suitable EMI home. I have decided to try not to even think about it this weekend and concentrate on some christmassy essentials such as food and presents. I will start the search in earnest after boxing day and take on board all your advice about not getting to panicky about discharge dates.

    I have arranged to bring Peter home for a few hours on Christmas Day to join us and my sister's family for lunch. I have no idea how this will go but really want to include him this year. Next year may be very different. My main concern will be how to persuade him to return to hospital, but I'm hoping a drive out to see lights etc. in the early evening will prove irresistible to him and after that I will drive straight back to hospital.

    Love and heartfelt thanks to all of you.

  14. linda a

    linda a Registered User

    Jun 13, 2006
    I Hope All Goes Well

    I do have a simmlar situation and the worry that makes me look on here to see how everyone else copes ,i so hope it all works out for you Linda A
  15. Westie

    Westie Registered User

    How are you?

    Linda, thank you for your message.

    How are you managing at the moment? I hope you and your daughter are getting some good support.

  16. Westie

    Westie Registered User


    The last 2 weeks have been very hectic for me but calm and uneventful for Peter. He came home for C Day but really just wanted to get back to the hospital as soon as possible. New Year was ignored and his birthday on Sunday was really just another normal day. He didn't even look at his cards.

    I & 2 good friends have phoned about 20 homes and viewed 7. None are really suitable and range from the truly awful to a place I would book myself into. Unfortunately, the nice place felt unable to cope with Peter's behaviour and were not prepared to consider him. Funding still hasn't been arranged as the meeting I had was a complete waste of my time as someone totally unsuitable from the wrong department was sent to talk to me. I'm still waiting for the first initial response from the finance department.

    I have exhausted the possible homes within our LA and also the more local ones in our neighbouring county. The net will have to be cast wider but my SW hasn't helped - just left me to phone and sort out anything myself. Discharge date still provisionally fixed by the consultant for 10th - this Thursday!!

    All change yesterday. Completely out of the blue, Peter has been involved in an argument and fight at the assessment unit. When I visited in the afternoon he was very agitated and wouldn't let me leave unless he was going as well. He physically tried to drag me through the doors. I had 4 staff and a junior doctor trying to reason (why???) with him which was a complete waste of time and I was still trapped within the unit after an hour and by now very late to collect my daughter from school. Very, very stressful all round. I was asked formally if I would take him home and I had to decline. Peter was then informed he would be sectioned if he refused to cooperate.

    To cut a long story short, I did manage to leave by sprinting along the corridor and reaching the doors before Peter whilst staff members distracted him. I was phoned later to say Peter had remained unsettled and uncooperative and had been placed under a 72hr section 5.2

    Discharge day now put on hold and Peter & I are due to meet the consultant again on Thursday to review matters. I realise this may have implications for both finance and placement depending if section lapses or is lifted or extended.

    So I am still in limbo really. Don't know what will happen now and am inclined to wait until Thursday before phoning yet more potentially unsuitable homes.

  17. christine_batch

    christine_batch Registered User

    Jul 31, 2007
    Dear Mary-Ann,
    I am so sorry to read of the enormous stress that you are still going though.
    I don't know if this will help but as they placed my Peter in a E.M.I. Unit, the Local Authorities have had a meeting and I was informed on Friday by Peter's Consultant that Continuing Health Care Funding has been agreed.
    I sincerely wish you the best with the meeting with the Consultant.
    Best wishes.

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