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daughter just diagnosed at 30

Angeldust Member Posts: 1 Listener
edited December 2018 in Autism and neurodiversity
hi there my daughter has just been diagnosed with Autism and aspergers recently by her psychologist soon to see a specialist, she suffers horrendously with confidence, anxiety and now depression.  but this diagnosis does answer a lot of questions with her.  my worry is she lives on her own with her two cats which are like therapy cats to her.  due to her issues she cant go out alone or in crowds etc its also bad when we try to go for something to eat etc it needs to be somewhere quiet.  i am worried just now as she is on income based support esa also has housing and council tax benefit and as been on that for a couple of years now.  with universal credit being introduced into scotland now i am worried that her benefit will be cut, or she wont get the money she does now as she is just managing any kind of issue or reduction will set off a depressive episode as it is outwith her routine.  also she applied for pip for her and she was refused.  i dont know whether to get a social worker involved in her care now.  i am disabled myself with Functional Neurological disorder, Fibro and chronic fatigue so i help her when i can taking her to shops etc but i feel she needs a support worker who she can turn to and can be there and help her but i dont know where to turn for this 


  • CaraLee
    CaraLee Member Posts: 39 Courageous
    I'm sorry to hear you are going through a difficult time. The national autistic society has lots of helpful information on your daughters condition and also have a helpline you can contact that may be able to advice you regarding some of your concerns - https://www.autism.org.uk/get-involved/about-us/contact-us.aspx . Have you considered contacting your local social services? I am disabled myself and my partner is not always able to care for me so contacting social services we were able to get a care work for myself,  carers support for my partner and alternatives for when he is not able to care for me. Regarding your concerns about finances there is some helpful information on Scope about universal credit and PIP appeal advice. Now your daughters diagnosis is confirmed and specialist care is being set up it may be that more evidence can be provided, PIP also recently changed the rules as people unable to go out alone due to emotional distress did not previously receive higher rate - my own claim was recently altered due to this. I hope some of this information is helpful.
    I wish you and your daughter all the best. Please let me know if you need any more information or support and I will try my best to help.  
  • MCCM
    MCCM Member Posts: 3 Listener
    Hi @Angeldust. It is positive that your daughter has received a diagnosis. Can i ask if she appealed the PIP decision? It may be worth asking social services for a needs assessment. Dependent on their findings she may be entitled to a personal budget which she could use to hire a personal assistant for some time each week. I would advise she applies for PIP again and contact www.carersuk.org for support. They often run free courses or drop ins to help you fill these in. Good luck and feel free to message me if i can be of any further help ?
  • BenefitsTrainingCo
    BenefitsTrainingCo Member Posts: 2,628 Pioneering
    Hi @Angeldust I also wonder if your daughter challenged the decision on her PIP claim.  It is very common for people to challenge PIP decisions and unfortunately often end up having to take their case to a tribunal, but these are hearings held locally, which are independent and are a good opportunity for a claimant to discuss their difficulties properly.  She has 1 month from the date of decision to ask for a reconsideration, but if there is a reason why it has taken longer, then a late request can be made (as long as it is not more than 13 months since the decision was made).  This request can be made by telephoning PIP or by completing a form which can be found at: https://www.gov.uk/government/publications/challenge-a-decision-made-by-the-department-for-work-and-pensions-dwp 
    In relation to Universal Credit, at this time, only if your daughter had to make a new claim for ESA or Housing Benefit (or any other means tested benefit UC is replacing) will she have to move onto UC.  At present, the government are not going to start moving existing benefit claimants onto UC until at least July 2019, but even then this will only be a small number, the main phase of this will not start until November 2019, so this is all some time away yet.  Hope that helps.
    The Benefits Training Co:
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  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,799 Disability Gamechanger
    Hi @Angeldust, and a belated warm welcome to the community! How are you doing?

    I'm glad to see you've had some great guidance above. Please do keep us updated, and if we can be of further assistance, do let us know.


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