Cerebral Palsy
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Estimating care needs

gladysgladys Member Posts: 53 Courageous
edited April 2019 in Cerebral Palsy
Hi all . I am trying to put together a very ball park figure of how much my sons care needs will be for the rest of his life . He has quad dystonia of CP and will need care with eating , dressing , toileting etc , most things in every waking hour . I assume he’ll need a live-in PA when he is older.  He is able to talk and cognitively not impacted and attends a mainstream school. 

On the assumption he makes it to university can someone tell me how It works ? Would I need to put money aside to cover the cost of a PA / carer not covered by the state . How much of a carer do they cover usually ? 

And in the workplace, assuming that is also possible, do I need to somehow find the money to pay for a carer / PA there as well ? 

I know it is all ‘how long is a piece of string ‘ but am somewhat bemused as to where to start and how on earth I come up with a simple figure . 

Id love to hear from any of you about what you advise how I should calculate it . Sadly I’m on a deadline by Friday evening to sort this out . 

Million thanks in advance . Emma 

Replies

  • Richard_ScopeRichard_Scope Administrator Posts: 2,340 Scope community team
    edited April 2019
    Hi @gladys
    I will try to answer as best I can. There are a few things that we cannot know, for example how changes in government may affect things.

    For University your son would be able to claim DSA (Disabled Students' Allowance)

    Scope has some information on Recruiting Personal Assistants. People that I know have used Skills for Care.org.uk it is a good information resource for finding and retaining PAs. UKIL is also very useful for guidance.

    It's always a good idea to set some money aside if you can. nobody knows what may happen under different administrations
    I hope this is a good starting point for you as it is difficult to give exact figures.
    Scope
    Specialist Information Officer - Cerebral Palsy

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  • gladysgladys Member Posts: 53 Courageous
    Hi Richard . All this is brilliant advice . Thanks so much . My son is 6 years old , so I am comforted there is at least help for him and I ( as a sole parent ) won’t have to pay for it all alone . I was getting in real lather about it all ! 😄. I will though definitely start putting aside some of his DLA higher rate Care component aside as well , so he had a buffer . Emma 
  • Richard_ScopeRichard_Scope Administrator Posts: 2,340 Scope community team
    edited April 2019
    No problem @gladys (Emma)

    It's good to be organised! I live with CP and I'm also a parent so I'm familiar with future worries. I put money away each month for my daughter in a bank account we opened when she was born. If you need to chat I'm almost always around.

    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • forgoodnesssakeforgoodnesssake Member Posts: 313 Pioneering
    Just a heads up...DSA covers very little now...!  Mainly equipment and VERY specilialist academic support.  Might change back by the time your son needs it but at the moment my son (quad CP, no speech, needs full personal care etc) is at Uni and all that DSA pays for is a few bits of computer equipment (not all specialist AT by any means) and one hour per week of mentor.  All the rest is either from Uni (academic support) or a support package joint health and social care.
  • gladysgladys Member Posts: 53 Courageous
    Dear forgoodnesssake. 

    Thanks so much for that reality check. Please can I ask when you say "All the rest is either from Uni (academic support) or a support package joint health and social care", was this a battle to get hold of ? Did the L Authority provide the support package of health and social care easily  ? Do you have to pay any of it yourself ? 

    I am inspired to learn about your son. Makes me think that maybe my ambitions for my son are not as misplaced as I wonder sometimes .....
  • forgoodnesssakeforgoodnesssake Member Posts: 313 Pioneering
    You don't get anything easily!  ha ha.  When DSA was decimated by this government Universities were told to absorb much of the cost and so they are expected to provide most academic support workers like scribes etc either by directly employing staff or using an agency (ours uses an agency) .  In my son's case they also have to do some personal care during academic hours.  We had to train them in that.  As he needs full time personal support and is unable to live at home whilst at uni (too far) we enquired about joint social care/continuing health care support (about a year before he started) and essentially, by doing a lot of evidence gathering and being clear on which of the CHC domain criteria were applicable, and having one or two very supportive professionals on board, the support was agreed.  But I have to say it was one of the most stressful things I have ever done, not so much the actual info gathering but the repeated delays in actually amking a decision which meant that almost nothin could be finalised (accommodation, support staff, agency training etc etc) until about 2 weeks before term started.  And even then it seemed to be left to me to actually find a suitable care agency becuase the one the uni uses for academic support were not able to do anything "medical".  No one clocked this til I did by chance after a conversation and so at the 11th hour we had to find another agency who could take it on.  The result is 2 different agencies involved which is far from ideal; one employed by Uni for academic and another employed by us (using DP& PHB) for personal and overnight support.  CHC is free (currently) as it is NHS.  Social care is means tested so depends on savings and income of disabled person (adult). 

  • gladysgladys Member Posts: 53 Courageous
    Hi there forgoodnessake 

    Sounds like although a really stressful difficult time you’ve managed to get a good structure in place .

    This is invaluable information about the likely future . Depressingly it sounds like I will need to put my boxing gloves back on well in advance of any entry to university. They’re not ever off for that long ! 

    Can I just ask you to clarify what the following mean : 

    “CHC domain criteria ( how do I find out what these are - apart from google ) /PHB . “

    We dont get anything at present on the ‘health ‘ budget as my son didn’t tick the right boxes according to their form .. 

    If social care is means tested then it sounds like I need to think carefully about what provisions are made for him as well . 

    Its daunting , but many years off I guess . Many thanks, Emma 
  • Richard_ScopeRichard_Scope Administrator Posts: 2,340 Scope community team
    @gladys do you receive DLA for your son?


    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • gladysgladys Member Posts: 53 Courageous
    Yes higher rate both components 
  • forgoodnesssakeforgoodnesssake Member Posts: 313 Pioneering
    https://caretobedifferent.co.uk/nhs-continuing-healthcare-decision-support-tool-tips/  Useful site...mainly aimed at older people and CHC but the principles are the same

  • gladysgladys Member Posts: 53 Courageous
    Fantastic , thanks a million . I’ll gave a good read through . ! 
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