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Have you ever had a grant, respite holiday or similar

WhileIBreathIHopeWhileIBreathIHope Posts: 216 Member
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


Replies

  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    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.
    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.
  • WhileIBreathIHopeWhileIBreathIHope Posts: 216 Member
    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 
  • April2018momApril2018mom Posts: 2,869 Member
    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



  • 66Mustang66Mustang Community Co-Production Group Posts: 4,693 Disability Gamechanger
    edited October 2019
    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_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    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. :)
    Community Partner
    Scope

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  • WhileIBreathIHopeWhileIBreathIHope Posts: 216 Member
    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 
  • pollyanna1052pollyanna1052 Member Posts: 2,009 Disability Gamechanger
    I get respite funding. I got it when I had  care assessment.
  • WhileIBreathIHopeWhileIBreathIHope Posts: 216 Member
    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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