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Direct payments for care for fluctuating care needs

Snowbelle Member Posts: 43 Courageous
Hi everyone,
I was wondering if I could get some advice or information on anyone'es experience for using direct payments for a fluctuating condition or for short periods e.g. for respite when family carers on holiday?

I have ME and my care needs fluctuate & also my family have been acting as main carers but like to book last minute holidays.  Both sudden fluctuations in care needs & my family members who usually care going on last minute holidays mean that I would ideally sometimes need to arrange care quickly - which seems almost impossible through Trust carers unless I'm put into residential care for rest bite.  The social worker mentioned I might be able to use Direct Payments & I was wondering if anyone else uses direct payments with fluctuating care needs & how they found it. e.g.

1. Is the extra effort of finding someone to employ, organising insurance & payroll & employers responsibility worth the benefit when it's for short periods (or are there ways to do this more easily if just for short periods)?
2.  Is it easier to arrange that through direct payments at short notice than try and get Trust carers (and is the extra organization involved in Direct Payments worth it)?
3. Any experience of using direct payments to pay for a care agency for short term respite?
4. Any experience at trying to find people to employ as carers for short periods e.g. without being able to offer them long-term job.  Have others been able to do this & any tips?

And any other advice you think would help.  I'm pretty new to this.  Sorry if I've asked silly questions & thanks for your help.


  • Antonia_Alumni
    Antonia_Alumni Scope alumni Posts: 1,781 Pioneering
    Hi @Snowbelle thank you for sharing this with us. and there are no silly questions asked. Some of our members may have some experience with this and will be able to answer your questions. ;)

    You may be interested in our  Managing your direct payments budget page. 
  • Snowbelle
    Snowbelle Member Posts: 43 Courageous
    Thanks @Antonia_Scope.  Yes, found the page & was very helpful, thank you.  
    Hopefully there are others in the community with varying care needs who will see the post & be able to advise.
  • Mandr52
    Mandr52 Member Posts: 23 Connected
    Hi Snowbelle 
    Yes we get direct payment from the council, we had to have a care assessment and now get six hours per week.
    The council had people on their books criteria is they must either be self employed or you go direct to a company.
    We have a Guy he's self employed  give me a invoice once a month.

    Only problem with someone self employed unless you know the council have checked them out make sure you see all documents insurance ,dBs etc etc.

    How ours works is He comes once a week by arrangement but does not always need to be hear six hours so I bank some.

    That stays there until I need it.     They give you a pre pay card which money is loaded onto every month.
    If you do not use all the funds in a year they will reduce it and take the money left back probably.

    So if you said you say need 16 hours a month you could I think keep that rolling to get enough hours banked to cover a week.

    if you use an agency THEY MUST come and do an assessment before hand please check the company out first ask for references etc.

    I hope this all makes some sense?

    If not give me a shout and ill try and clarify a little more ,it is a good scheme its run by social services and you're local council.
  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,682 Disability Gamechanger
    Hi @Snowbelle
    I have asked the @BenefitsTrainingCo to take a look at your question.
    Senior online community officer
  • Snowbelle
    Snowbelle Member Posts: 43 Courageous
  • BenefitsTrainingCo
    BenefitsTrainingCo Member Posts: 2,628 Pioneering
    Hi Snowbelle

    Unfortunately direct payments fall outside of our area of expertise. We can only advise on state benefits and direct payments are not part of the state benefits system.

    The Benefits Training Co:
    Paul Bradley
    Michael Chambers
    Will Hadwen
    Sarah Hayle
    Maria Solomon
    David Stickland
  • Antonia_Alumni
    Antonia_Alumni Scope alumni Posts: 1,781 Pioneering
    Hi @Snowbelle you're welcome. Please keep us updated. ;)
  • atlas46
    atlas46 Member Posts: 826 Pioneering
    Hi @Snowbelle

    Nice to meet you.

    I had 10 years experience of dealing with Direct Payments, in respect of my brother in law, who has servere LD.  I have to say, it worked fine at all times.

    Looking as some of your points.

    The local authority ran the payroll and employer services.

    The whole concept of DP, is about your needs over time.

    I would suggest you employ someone direct on a regular basis. That way they get to know you and your needs.  There are many self employed Carers out there, you might be surprised to know.

    My brother in law, has respite care at someone’s house and this worked well.

    Be careful and ensure you spend the budget, or they try to reduce your funding.

    I would also suggest you get some advice from the ME Society, they are keen that suffers are able to maintain their independence.

    Hope this helps and keep us informed.
  • Snowbelle
    Snowbelle Member Posts: 43 Courageous
    edited March 2019
    Thanks, @Mandr52 .   That's great that your council had people on their books.  I don't think ours does as the social worker mentioned she had been contacting the students' employment service at the local uni to try and find a PA for another lady.  
    It's really helpful to know that the guy you employ is able to be flexible & bank some unused hours.  
    Thanks for the reminder for checking insurance documents etc if using someone who is self-employed.  
    Are there any particularly good ways of finding someone who is self-employed?  (any particular websites or other ways?  
    My fluctuations vary in timescale - at one point I had over a year where I could manage as long as groceries/ cooking & cleaning were done, but then for the last 6 months I've needed help getting the food even if pre-prepared & washing etc.  I guess I'm a bit nervous if I had a good stint that was prolonged & they reduced my direct payments & then I got worse again & needed them increased, can they increase them again & would there be a big delay.  
    What do you do when your PA is sick or on holiday?  Do you get cover from somewhere?
  • Snowbelle
    Snowbelle Member Posts: 43 Courageous
    Thanks so much @atlas46.  
    That's really helpful to know it's been working for your brother-in-law for so long.
    Do you have any tips on how to find self-employed carers?

    How does the respite care at someone's house work?  Is it a person you know & for the time he's there, the payments go to them while he stays with them?  I have some friends who are currently looking after me for a week to give me a change of scene and my family a break while I'm waiting for carers.  It would be great it I could use the direct payments to pay them for the odd respite break when normal carers are on holiday etc.

    Thanks for the tip to contact an ME charity.  I couldn't find the ME society.  Did you mean the ME association, or Action for ME by any chance?

    Thanks so much again for your help and advice


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