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Estimating care needs

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
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
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.
Specialist Information Officer - Cerebral Palsy
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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.
Specialist Information Officer - Cerebral Palsy
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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 .....
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
Specialist Information Officer - Cerebral Palsy
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