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Have you ever had a grant, respite holiday or similar

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WhileIBreathIHope
WhileIBreathIHope Posts: 216 Pioneering
edited October 2019 in Coffee lounge
Personally I’ve always had the wrong type of Autism, the one that all grants ineligible for as “high functioning “ which is just another discrimination excuse.

Interested in what people were offered, how they got it as not had so much as a paper clip offered.

do these mythical things exist? Not after anything as sure there are strings like being used for tame pet for advertising etc of the organisation.

just curious


Comments

  • poppy123456
    poppy123456 Community member Posts: 57,127 Disability Gamechanger
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    Hi,

    Yes, my daughter receives support of 8 hours per week (or used to until we very recently moved house and now i'm battling for her support to continue through our new local council)

    Anyway for the past 2 years on top of her personal budget she has received an extra £2,000 and this is to be used for respite for her to do what ever she wants. She uses it for short holidays and weekends away for concerts. She pays for herself and a carer to go with her because she's unable to go alone. Very useful and extremely helpful because it gives me a break from her as i have disabilities myself.

    How did i get that respite? It was automatically awarded on top of her care support plan package and no i didn't ask for it.
    I would appreciate it if members wouldn't tag me please. I have all notifcations turned off and wouldn't want a member thinking i'm being rude by not replying.
    If i see a question that i know the answer to i will try my best to help.
  • WhileIBreathIHope
    WhileIBreathIHope Posts: 216 Pioneering
    Options
    Hi,

    Yes, my daughter receives support of 8 hours per week (or used to until we very recently moved house and now i'm battling for her support to continue through our new local council)

    Anyway for the past 2 years on top of her personal budget she has received an extra £2,000 and this is to be used for respite for her to do what ever she wants. She uses it for short holidays and weekends away for concerts. She pays for herself and a carer to go with her because she's unable to go alone. Very useful and extremely helpful because it gives me a break from her as i have disabilities myself.

    How did i get that respite? It was automatically awarded on top of her care support plan package and no i didn't ask for it.
    Very pleased to hear that some good does come around, when I used to get direct payments they expected my family to fund xyz and it wasn’t possible.

    That and council continually asked for any excess over £20 back as under funded- making planning or budgeting direct payments a nightmare.

    I am sincerely pleased for your family 
  • April2018mom
    April2018mom Posts: 2,882 Disability Gamechanger
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    Yes

    We have used Enable Holidays in the past. My son has open spina bifida. We have had a needs assessment and are awaiting to hear what the final outcome is. His PB is going to cover any adaptive equipment he needs. This is something the local council deals with. For more information, please visit this page https://www.disabilityrightsuk.org/personal-budgetsthe-right-social-care-support



  • 66Mustang
    66Mustang Community member Posts: 14,982 Disability Gamechanger
    edited October 2019
    Options
    I really sympathise with you OP. I too have always been told I have the “wrong type” of disability whenever I apply for help. They always have a “get out” clause, don’t they?

    I can also sympathise with the “high functioning” autism. I have this and never got any support at school because I could do maths and English so I was obviously doing fine at school - ha! I should have failed on purpose in hindsight, then I’d have got the support I needed.
  • Chloe_Scope
    Chloe_Scope Posts: 10,581 Disability Gamechanger
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    Thank you for sharing this @WhileIBreathIHope. The Family Fund can off these kind of things to families with a disabled child. This may not be applicable to you, but I just wanted to add it as a resource for anyone who looks on the thread. :)
    Scope

  • WhileIBreathIHope
    WhileIBreathIHope Posts: 216 Pioneering
    Options
    66Mustang said:
    I really sympathise with you OP. I too have always been told I have the “wrong type” of disability whenever I apply for help. They always have a “get out” clause, don’t they?

    I can also sympathise with the “high functioning” autism. I have this and never got any support at school because I could do maths and English so I was obviously doing fine at school - ha! I should have failed on purpose in hindsight, then I’d have got the support I needed.
     Don't suppose you got banned from NAS forum years ago. I asked why I was ignored for a written diagnosis when they fell over themselves for others and got banned for questioning the reasons 
  • pollyanna1052
    pollyanna1052 Community member Posts: 2,032 Disability Gamechanger
    Options
    I get respite funding. I got it when I had  care assessment.
  • WhileIBreathIHope
    WhileIBreathIHope Posts: 216 Pioneering
    Options
    I get respite funding. I got it when I had  care assessment.
    Again -pleased that these features are available, locally the support was gutted by council who co funded it with local NHS partnership.

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