Posted on 11 Comments

Direct Payments for Care of a Disabled Person – Worth it or not?

Some of you may not actually be aware of what direct payments are.

Social services come out and assess a person with a disability or child to see what their care needs are.  From that, a parent (or the person with a disability) can be offered a set amount of hours per week that they are entitled to “buy” the services of someone else to care for them.

We were assessed and approved to receive 8 hours worth of Direct Payments a week for middler.

I can use them for

  • short breaks (take this to mean a few hours a week with a carer who takes them out)
  • nursery place / after school clubs with specialist support  (read £37.50 per day for special needs after school club).
  • club fees (not many clubs going around that will take special needs children)
  • personal care (hahahahahaha)
Finding someone to help

Direct payments means that we need to find our own staff to carry out the jobs above.    Aside from the fact that most of the people who could benefit from direct payments don’t have the ability to interview staff and deal with their employment, the pool of staff who are any good is very very low.

The council may advise and carry out police checks on staff, but the responsibility for the staff shifts from social services / the council – TO YOURSELF.

This means that if anything goes wrong, it’s your own fault.

Employing someone

When you do find someone who you “trust”, you then have to sort out the employers insurance and their tax and national insurance contributions – oh and pay the PAYE to the inland revenue.  Yes, you can use a payroll company, but you still have to sort out hours, payslips and HMRC.

The biggest problems with it are:

  • Finding good staff that don’t make a fool of the service users (middler to me).
  • Finding good staff who have enough time to do it.
  • Arranging the staff time with your child and having to pay for that as well.
  • Risking losing the care package as there are not enough people to do it.

What happens is, that if someone doesn’t manage to use up their direct payments because they can’t get staff, then when they reach the next review, they may well have some of the money taken back, and their hours cut as they will be seen to be not needed as they were not used.

Biggest Bug Bears
  1. My package is for my child.   As well as the huge mountain in finding someone to take responsibility for our children at times we need to find the time to do the regular stuff that other people can do with their kids as part of their daily lives (like homework).
  2. My biggest bugbear (not including not being able to find employees) is that I really could be done with someone doing my housework or making the supper sometimes so that I can spend quality time one to one with my middler.
  3. The person who I PAY to take him out gets to spend the quality one to one time with my boy on  my sterling, and I still have to stay up late to do chores as they have to be done as I have to spend the time he does go away doing the homework etc for the other two.  (yes, direct payments covers the cost of their time, but I have to pay for the carers share of where they go and what they do).
The potential is there for it to be a good way to go in buying the care that we need, but if the social services don’t also start a way help find staff, then it is always going to be difficult to work.
Leave me a comment to say what you think about it.

11 thoughts on “Direct Payments for Care of a Disabled Person – Worth it or not?

  1. I know someone who uses direct payments & it’s been positive for her. She thought she’d never manage it but has picked it up easily. She uses it to employ people to do night shifts with her son who doesn’t sleep well. She therefore gets some rest. She employs mostly social work or social care students & has had no probs. Works well for some I suppose.

    1. It will work for some people, but for a lot of us it’s not flexible enough. I’m glad someone has got some good use out of it though, I struggle as students tend to have difficulty understanding that special needs kids can disappear PDQ if they are not watching every second they have them. I never thought about someone coming into the house and doing the nightshift. Must pass that one on to a lady I know who is really struggling with nights.

  2. How sad that you can’t spend the funds in the best way to suit your family. If they’ve identified that you have a need then I can’t see the problem in just paying the money to you – if you choose to spend it on staff to assist with middler or staff to assist you with housework so YOU can spend more time with middler – should be up to you. x

    1. Yep, the identify a need based on what they think and we have quite narrow guidelines as to what we can use it for, it it has to be something that the employed person does with your child. So gives the employee the quality time with your child one to one instead of you. Nobody living in the same house, or close relative is allowed to be paid using the DP money so rules out the most trusted people who could reduce hours at work to do hours with our kids. Maddening.

  3. I have a friend who has direct payments for her son and faces huge problems finding out how to work them properly. I do think that the system needs more thought put into it and I think there are too many people not being supported

    Another good thought provoking post.

    1. Thank you. Difficult for some, and staff are a huge issue for many.

  4. I think the theory behind direct payments is good, you get a pot of money to spend as you see fit on allowed activities.

    The practice is nightmarish. I’m on the other side and have worked as a carer for kids on this scheme.

    Administration, as you say, falls on the parent. What if you don’t speak English? What if you have specific needs say care that provides for Halal needs?

    Agencies and other providers find it hard as they don’t have a guaranteed number of hours to offer their staff because service users can choose how they use the hours, and rightly so. As a carer you don’t know from one week to the next what your availability is or how much you will be paid, which results in a lot of carers getting themselves other jobs, so they have some security.

    I’m naughty, I have to say I’ve spent hours ironing and tidying so mum can have quality time with her special needs child, with me avaiable for lifts, cares and other responsibilities, which is possibly misuse of the scheme but I don’t care. As far as I am concerned the elderly get this in their packages, why shouldn’t kids?

    The alternative doesn’t work either where you get a set number of hours, the council then sends in whomever they please, and its completely inflexible.

    I am not sure what the answer is but there must be one!

    1. I love love love your comment. I really wish there were more carers out there who would do it like that. I am absolutely gobsmacked at how difficult it is to get someone to actually do what we need them to do.

      Social services are not really interested in what we need to have done, only what they say we can have done. It sort of makes a mockery of the assessment of need that they have to do when it doesn’t actually identify what is actually needed for parents.

      1. It’s maddening. I think there’s a real misunderstanding of need, and lack of personalisation of services. It makes perfect sense to me that say ironing or hoovering is dangerous with a child who becomes overstimulated or exhibits challenging and dangerous behaviour. Why not pay a carer for 3 hours of ironing so the parents and child can go to a special needs group or soft play centre whilst tasks get done?

        Too often decision makers have no idea. They haven’t really seen the situation for what it really is, and make decisions inside rigid guidelines. It isn’t good enough.

        Aged care is changing so much faster, and its a shame children’s services are still the cinderella service and they shouldn’t be.

  5. Could this be another ploy to make the government look good in their “giving benefits” system whilst they make it extremely difficult for people to actually claim?

    It’s all very well offering all these benefits and saying they are in full support of SEN’s, but they don’t take into account that people who are to receive these benefits haven’t got a lot of time on their hands to be fannying around with tax, mainly because they have a full time job looking after their special needs kids.

    CJ xx

    1. It certainly is one way to make sure that a lot of people who should be able to access care – not get it. Lots of people just can’t cope with all the paperwork. I can handle it no problem yet I find it a bind and not flexible enough to be practical.

      At the start, i was warned not to turn it down if I was offered it as it’s the first step on the respite ladder. Scary if that’s how it is looked at, and I think it’s the way for social services to take the problems finding carers off themselves and onto the people who need it.

      I have them, but I hate the system and how inflexible it is.

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