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Lost my autistic daughter's care package

CathEssCathEss Posts: 3Member Listener
edited June 2018 in Autism and Aspergers
Lookng for advice. My autistic 23 yo daughter had a good care package where we lived but due to relocation to another council because of husbands job she now has nothing. 5 months been waiting and told all services are full and cant help. I am expected to stay home with her which is causing great financial difficulty as I cannot work. Spend 24 hours in the house as this is the new routine she has adopted and find it difficult to change it. At my wits end. Have her rights to care been violated. How long can council drag their heels. Any advice gratefully appreciated.

Replies

  • cornishmaidcornishmaid Posts: 18Member Courageous
    I dont have any advice Im afraid but I am so very sorry to hear about your problem.  I do hope you find someone who can help you
  • steve51steve51 Posts: 5,883Community champion Disability Gamechanger
    Hi @CathEss

    Good Evening it’s great to meet you today.

    I’m so sorry to hear about your current situation.

    We have got an “Independent Support Service” here at Scope.

    I will forward your post onto them for you & they will hopefully be able to help/advice you further.

    Please please let me know if I can help you further.

    Hi @IndependentSupportServices

    Can you please offer me some help & advice with this post????

  • steve51steve51 Posts: 5,883Community champion Disability Gamechanger
    Hi @CathEss

    Good Evening it’s great to meet you today.

    I’m so sorry to hear about your current situation.

    We have got an “Independent Support Service” here at Scope.

    I will forward your post onto them for you & they will hopefully be able to help/advice you.

    Please please let me know if I can help you further.

    Hi @IndependentSupportServices

    Can you please offer me some help & advice with this post????

  • CathEssCathEss Posts: 3Member Listener
    Thank you, really appreciated.

  • SunshineLouSunshineLou Posts: 93Member Courageous
    @CathEss You should definitely have a care package in place. Unfortunately as you’ve now found out it’s definitely a post code lottery in terms of the funding that’s available.
    I lived in London for 20 years and had my son 4 years before leaving. He was diagnosed aged 2.
    The council there didn’t have much funding available and he actually ended up on the adoption register! They couldn’t provide care and I was a struggling single mum.

    We moved down to Dorset and hey presto. An amazing package of care instantly. All the support I needed to keep him at home with me!
    They’ve now, 11 years later, given him a place at a residential school for Monday to Fridays (I now have my own disabilities) and that’s on top of his current package of care. 4 nights a month of overnight respite and two days a week in school holidays out with his PAs.

    It really is about where you live and how much noise you make.
    If your daughter has a social worker meet with them and make it very obvious how you’re struggling to cope.
    Email is best as then it’s a solid record that goes on file.
    Her age will go against her though. Adult social care isn’t as good as children’s care. 

    Hope that helps a little?

  • greatsaygreatsay Posts: 17Member Connected
    They are also cutting everybodies hours in Nottinghamshire.
  • GeoarkGeoark Posts: 1,190Community champion Pioneering
    Hello @CathEss and welcome to the community.

    Autism is one of the few, if not only, disability which has its own law on what local councils and NHS must do. Unfortunately there has also been a lot of cuts in their budgets which can make things difficult and as said it can be a bit of a postcode lottery.

    You can find the statutory guidance at https://www.gov.uk/government/publications/adult-autism-strategy-statutory-guidance

    Hopefully it will give you some help, if only to know what questions to ask and knowing what they should be doing.

    As an individual I stood alone.
    As a member of a group I did things.
    As part of a community I helped to create change!

  • whistleswhistles Posts: 1,603Member Disability Gamechanger
    So they have assessed as needing help and are not offering you the direct payment.
    I have to say as others have said, cut backs are everywhere.
    Have you applied for pip? Receive this? 
    Do not follow me, I don't know where I am going.
  • SunshineLouSunshineLou Posts: 93Member Courageous
    edited June 2018
    @whistles i hope she does receive it!
  • whistleswhistles Posts: 1,603Member Disability Gamechanger
    @whistles i hope she does receive it!
    If you are referring to pip. I know an autistic lady who has been refused. It's not about the condition. 
    I don't know why they ask if you are on the phone when you apply!
    Do not follow me, I don't know where I am going.
  • SunshineLouSunshineLou Posts: 93Member Courageous
    edited June 2018
    @whistles it really depends on what care they need and what they’re able to do independently. This lady says her daughter won’t go out. She clearly needs care. My son has to have 24/7 care and supervision. Everyone is different though.
    Yes, I was referring to PIP.
    Anyone can be refused if they don’t meet the criteria.
    Also, many people are being refused unlawfully. That’s why 68% of appeals are successful when they go to tribunals.

  • CathEssCathEss Posts: 3Member Listener
    Thank you for all your comments, found them very helpful.  We had an excellent care package in the previous county and would have been so much easier to stay, however husbands company deemed otherwise and I thought the new council would replicate the package she had previously been assessed for but no, cannot offer no where near that level and to date have given nothing. Never realised there were different laws relating to autism so going to give that a good read.  Many thanks for pointing me in the right direction.
  • SunshineLouSunshineLou Posts: 93Member Courageous
    @CathEss You could always get in touch with the National Autistic Society for advice on those specific laws. 
    I didn’t even know there were any myself! I may do the same, just so I know what’s what x
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