Parents and carers
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Direct Payments - generous or too little?

AprilApril Member Posts: 98 Courageous
Hello, I'm a parent/carer. My son receives direct payments, but it never seems enough. I'm so tired (he wakes in the night) and I would like more help, especially as I care for two others.
I was just wondering how the help differs from borough to borough. What is the average monthly direct payment for someone like my adult son (severe spastic cerebral palsy) who is still living at home? Is anyone in the same or similar situation who has a very good borough, and who feels that their adult child's direct payment allowance is very generous and covers all their needs? On the other hand, where is the worst borough for direct payment allowance?

Replies

  • kazzy1kazzy1 Member Posts: 31 Connected
    It would be interesting to know which county and number if hours paid care!
  • Abi222Abi222 Member Posts: 14 Connected
    Hi @April
    I have always found support for my adult son, who sounds quite like your son, quite a battle.  It is appears to be more of a needs led basis than a flat amount of hours given per person by the  Local Authority.
    When my son left school we insisted on a reassessment as his package was quite poor and did not meet his needs which had changed.  He became very isolated and withdrawn which affected his mood and appetite dramatically and he began to be quite mean and difficult. 
     If you feel any of your sons daily living/health needs are not been met through his package and you are unable to meet them due to other commitments/health issues etc you have you may be able to have his needs reassessed also.   
    More hours may be available for personal care, social inclusion, hospital or health appointments etc.
    Our care co was very helpful (as she was due to leave her job!) and she told me that once my son became an adult  I was not expected to do his personal care if I/he or both of us did not wish to do so and that day care to suit his individual needs/requirements should be provided and that his respite should not be reduced. This was very helpful when a new package was pulled together.

    Our borough is in Yorkshire and they are usually very stingy, it seems to  depend on the assessment officer and how understanding of individual needs they are.   Please make sure that you highlight that any extra services requested are about your sons needs as if extra support is put in for you, you may be means tested separately for these service.


    I hope this is helpful...best wishes






  • AprilApril Member Posts: 98 Courageous
    Thank you, Abi. Yes, that's very helpful.

    I don't get any hours for help at home. My son gets direct payments for a few days out in the community, but nothing at home, and I am often struggling to do everything. I've asked for more help, but I know they will try to reduce what I've asked for. A social worker admitted to me that they always try to "knock you down" with regard to the number of hours.

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