Parents, carers and disabled parents
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Using Direct Payments to purchase goods (trike) instead of care

purplegirlpurplegirl Member Posts: 2 Listener
Hi,
I receive direct payments for my son (13) who has quad cerebral palsy and requires 24/7 care, hoisting and is non verbal. 
We have had no carers coming in from March to mid July (and he hasn’t been at school either) so we have unused DPs.
Mencap have just started coming back into our home for 7 hours a week.
My son has grown considerably in lockdown and has outgrown his trike. Tomcat have quoted almost £4000 for a new trike.
According to government DP guidance below it gives scenarios where people use DPs to buy items (computer/games console) for their mental health.
The only things my son loves to do are swimming (hasn’t been able to since March) and to ride his adapted trike (with carer handle to steer and brake for him).
His physical health has declined during lockdown (I cannot lift him anymore to do activities outside as he almost weighs 60kg, we have ceiling track hoist in the home) and riding a trike gives his legs mobility (as he is unable to sit or stand independently) it will also have a massive lift to his and my mental health.
I spoke to my son’s social worker from West Berkshire Council and he agreed a trike would be beneficial and that he would ask his supervisor for permission to spend DPs on the trike.
Unfortunately I have now received an email saying this has been refused. 

Has anyone on here used DPs to purchase items instead of care under this new guidance?
Did your LA approve your purchase beforehand?

I have added the government guidance below, thank you for any responses x

Subject: Using direct payments during the coronavirus outbreak: full guidance for people receiving direct payments and personal assistants - GOV.UK

Replies

  • janer1967janer1967 Member Posts: 9,159 Disability Gamechanger
    Hi and welcome to the community glad you have joined us.

    I am sorry I dont have knowledge of direct payments but I will tag another member who may be able to help more @poppy123456

    Also have a look in our parents of disabled children or our parents and carers section there may be more members there who can help

    Is there any other way to finance the trike ? how did he get his first one
  • purplegirlpurplegirl Member Posts: 2 Listener
    Thank you for your reply. His 1st trike was 90% funded by Cerebra but we were on wait list 12 months and we can’t wait that long. 2nd trike was mixture of self fundraising and just giving but don’t feel I can ask friends again to help especially in the current situation.
    Do I need to post again in parents section or will everyone see my original post?
    thank you for your help
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    HI and welcome, Thanks @janer1967 for the tag.

    Unfortunatelty, direct payment funding is only to be used for what it's stated for in the care plan, it can't be used for any other purpose and you were advised correctly that this isn't allowed.

    My daughter also receives direct payments and i manage the online banking. She also hasn't had any support since lock down and the money is increasing weekly in the bank but it can't be used for any other purpose but the support she receives.

    The link you posted above is just purely for "guidance" only and the rules are not set out in stone by that guide. If you read it the words "should" has been used a lot, but unfortunately what local councils should and could do are 2 very different things.

    As Janer has asked how did you fund his first trike?

    Depending on the age of your son, if he's a child there are disability funding groups on the internet, family fund comes to my mind.. see link. https://www.disability-grants.org/family-fund.html

    There's also other information here in this link.

    Hope this helps.


    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • janer1967janer1967 Member Posts: 9,159 Disability Gamechanger
    Your post can be moved if you want but I was meaning for you to look in those sections to see if there are any similar posts 

    If you want it moving just ask and we can sort it 
  • Ross_ScopeRoss_Scope Posts: 3,161

    Scope community team

    Hi @purplegirl

    Welcome to the community, it's a shame you are having difficulty securing funding for the trike.

    I have moved this discussion to a section of the community where it may get more responses, so hopefully we can help you more.
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  • forgoodnesssakeforgoodnesssake Member Posts: 357 Pioneering
    edited August 2020
    Actually I know of at least one family who WERE allowed to purchase equipment in lieu of support, using LA DPs.  So actually they do have that discretion, but they can of course choose not to use it...
    (This is a largely rural LA in the north of England)
    "Just to let everybody know that my request for flexible use of J's DP's has been accepted. It took 2 weeks but it probably would have been quicker if I had of known that they needed the prices for the items requested. They also checked with school for evidence that the things I asked for were needed/would be beneficial for J.
    I asked for an adult space hopper, trampoline, weighted blanket, some lego sets and books. First 3 for the sensory side of things and lego and books as they are the only things that hold his concentration long enough for us to get 10 minutes peace"

  • Denise11Denise11 Member Posts: 99 Pioneering
    Hi!  I believe that benefits are given to people to ensure that life is made easier and happier. It becomes your money to do whatever to help your son's quality of life. Also, I am 58 years old and have never, ever been asked what I use the money on.  So, if there's money in the pot, I would buy the trick.

    Please tell us how things go?  Denise11   
  • forgoodnesssakeforgoodnesssake Member Posts: 357 Pioneering
    Yes benefits become your money to spend in any way you need to. However this query is about local authority direct payments and they have to be spent on what you have been assessed as needing, usually in the way of support rather than equipment (except in exceptional circumstances and with the agreement of the local authority) :)
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    Denise11 said:
    Hi!  I believe that benefits are given to people to ensure that life is made easier and happier. It becomes your money to do whatever to help your son's quality of life.
    That's not quite correct sorry. This is money given to them by their local council so it's not actually their money to use as they want. The money given to them is not a benefit, it's a direct payment to be used for care for their child. It is not to be used for anything other than what's stated in the childs care plan.

    When a person receives a direct payment their local council do check what the money is spent on on a regular basis.
    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • KarenO_ScopeKarenO_Scope Member Posts: 24 Courageous
    Hello @purplegirl, I work for the Activities for All Scope project in Leeds and we often support Lead Professionals with access to Short Breaks and Direct Payments, as in Leeds you no longer need a Social Worker to access the panel to make this type of request. In our experience and our Local Authority if a Direct Payments package is not working or a parent is struggling to recruit carers we call an early review. We have been able to make a new request for a personal budget or creative care package, where we look at alternatives to meet need, this has sometimes included pieces of equipment or even holidays. The only thing with requesting a personal budget is that you would lose access to personal assistants through the Direct Payments system, unless a mix package is requested, but often there would be a reduction in the Personal Assistant hours. It will really depend on if your Local Authority is offering Personal Budgets and a more flexible approach to support. 

    My other suggestion would be seeing if the company you are planning to go to for the trike, do any kind of part exchange or support families looking to sell outgrown trikes, to try to reduce the cost of a new trike. Ask your Social Worker or OT to see if there are any other small charities that support with access to this type of equipment.

    I hope you are able to get further support to help access the trike you need.
  • Denise11Denise11 Member Posts: 99 Pioneering
    Sorry poppy123456  I didn't understand and should have kept quiet.

    Denise11
  • Cher_ScopeCher_Scope Posts: 3,349

    Scope community team

    Hi @purplegirl

    I wondered how you were getting on?  I see our members have provided lots of advice and I hope it's helped.
    Online Community Co-ordinator

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  • newbornnewborn Member Posts: 682 Pioneering
    The L A refusal,  in the circumstances,  was unreasonable abuse of power.   Is it likely a court would sanction such cruelty?  As suggested,  given that things become outgrown,  it makes sense to buy and sell second hand clean reconditioned items, which is also better for the planet.  
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    It's not unusual for them to refuse to spend the money on something that isn't stated in the care plan.
    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
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