Parents, carers and disabled parents
If this is your first visit, check out the community guide. You will have to Join us or Sign in before you can post.

Difficult times

lisaann76lisaann76 Member Posts: 13 Connected
I'm a disabled mum of 3 autistic children .
Finding everything to much to bear.
No services for my daughter to support what I'm going through 
Suffolk support is ridiculous. 

Replies

  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    Hi,

    Have you referred yourself for a needs assessment? Doing this there maybe some help out there for yourself. See link,

    Community champion and 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.
  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    Hi @lisaann76 and a warm welcome to the community!

    I'm so sorry to hear that the support in your area is lacking so much, and that you are finding things really difficult at the moment.

    How old are your children if you don't mind me asking? This will just allow me to provide you with the most relevant information. :)
    Community Partner
    Scope

    Tell us what you think?
    Complete our feedback form to help us to improve your community.
  • lisaann76lisaann76 Member Posts: 13 Connected
    My children are 8,12,15
    All autistic. 
  • lisaann76lisaann76 Member Posts: 13 Connected
    Been waiting for assessment with social for 3 months
  • paffuto10paffuto10 Member Posts: 388 Pioneering
    Hi @lisaann76 and welcome  :)

    Sorry to hear you're struggling and no support. 

    Are all children in school if you don't mind me asking? 

    If you are having difficulties with school, we found IPSEA very helpful with our son (severe autism) 
    He's adult now and in supported living but I still remember the struggles. 

    Must be extremely difficult with three children with autism. 
    Keep posting on here and having a look round the forum, I'm sure you will get some good advice, support and understanding. 
  • lisaann76lisaann76 Member Posts: 13 Connected
  • SeanchaiSeanchai Member Posts: 411 Pioneering
    I,m so sorry to read of your plight Lisaann , its hard going with one autistic child , never mind three . I,m afraid you are a victim of cuts from our esteemed government , the quicker changes are made the quicker we will all get the help we require. I,m afraid i have no practical help for you apart from praying for you and your children but i,m sure Scope experts will give you ideas on where you can get help ...good luck .
  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    edited November 2019
    Hi @lisaann76, thank you for that information.

    Would you mind telling us how long your children has been diagnosed for? At Scope we have a service called Navigate that supports emotional support to parents who's child has received a diagnosis within the last year. Here is the list of our family services.

    Also, do your children have an Education, Health and Care Plan (EHCP), if not Scope have lots of information about the EHCP process and making appeals that you may find helpful. An EHCP stays with a child until they are 25 and is transferred when they go to high school. Are they currently getting much support?

    Also here is some information about Family Fund, they are a charity who provide grants to families who have a disabled child. The support can be practical but it can also be days out for the family and respite type things.

    I am tagging @SparkleSheffieldAutismAdvisors who is our amazing Autism adviser.

    Please do keep us updated and let us know how you get on! :)
    Community Partner
    Scope

    Tell us what you think?
    Complete our feedback form to help us to improve your community.
  • lisaann76lisaann76 Member Posts: 13 Connected
    My two boys have been diagnosed for about 3 years,but my daughter only got her diagnosis 3 months ago.
    I didnt see as many signs in my daughter but the school picked up something was wrong with my daughter. 
    It's been even more difficult lately coz my multiple sclerosis has worsened and I'm now in a wheelchair. 
    Making everything more difficult. 
    I've got echp for the boys and had to go to tribunal to get them in specialist schools .my daughters echp has just started ,but finding it hard to do it all again.

  • paffuto10paffuto10 Member Posts: 388 Pioneering
    @lisaann76

    I really don't know how you're managing, you deserve a medal. Seriously! 

    I hope some of those links from Chloe will be useful. 

    Do you have family or friends to help out at all? 
  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    @lisaann76, it sounds like you are doing an incredible job considering your circumstances. I would certainly look at the Navigate service that I have linked above as the skills you would learn can be transferred to all of your children, not just your daughter. 

    I really hope that you don't have to wait much longer for the social referral and that they'll be able to provide more support, please do let us know.

    Community Partner
    Scope

    Tell us what you think?
    Complete our feedback form to help us to improve your community.
  • lisaann76lisaann76 Member Posts: 13 Connected
    I dont have friends or family .
    My dad pasted away of cancer 4 years old 
    And my mum has dementia and in a care home. 
    My partner is all I have
  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    edited November 2019
    I'm really sorry to hear this @lisaann76! I'm glad your partner is there to offer support, but it cannot be easy.
    Community Partner
    Scope

    Tell us what you think?
    Complete our feedback form to help us to improve your community.
  • paffuto10paffuto10 Member Posts: 388 Pioneering
    @lisaann76

    Very sorry to hear about your parents lisa.
    And friends in real life are hard to make/keep when you have your hands full aren't they?
    It can be very isolating. 

    I'm the same but hubby is my best friend (and my carer)  :)

    You will make friends on here though so do try to keep us all posted if you can manage it. 

    Take care and I look forward to seeing you around the community. x
  • lisaann76lisaann76 Member Posts: 13 Connected
    We have thought about my partner becoming my carer,but. We are unsure if we could cope on less money.
  • paffuto10paffuto10 Member Posts: 388 Pioneering
    Well your partner would get Carers Allowance and I think ESA or UC, but probably not as much as working if he's on good income. 

    We still get Income Support (haven't been changed to UC yet) and PIP for myself and Carers Allowance for hubby. 

    Struggle but do manage. 

  • lisaann76lisaann76 Member Posts: 13 Connected
    We changed to uc,when he moved in with me but to be honest I get less money for us than tax credits. 
    Was a drop of about 900 a month, not sure how much of u get if he dodnt work
  • paffuto10paffuto10 Member Posts: 388 Pioneering
    Goodness, a drop of 900 is a lot! 

    I will just put @poppy123456 name on and she might be able to come and advise you. 

    I don't know much about benefits, only how to fight tooth and nail to get them!!  :D
  • paffuto10paffuto10 Member Posts: 388 Pioneering
    Oh I see poppy didn't come on @lisaann76.

    I'm hopeless at tec stuff, I just thought if I put her name she would magically appear  :D 
    My daughter will laugh her socks off she sees this!! 

    Anyway, have a look around the site Lisa and you will find benefits advice, I'm sure. 

    Hope the Social get back to you soon, maybe phone to remind them that you are really struggling at the moment? 
  • lisaann76lisaann76 Member Posts: 13 Connected
    I have phoned them so many times,I'm ment to be on the urgent list. 
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    @paffuto10 i'm so sorry, i didn't see that tag. I should look at who's tagged me but i forget to do that and often miss those tags  :(

    @lisaann76 I noticed that you're receiving £900 less for UC. As you're now claiming with your partner as a couple, then it will depend on his earnings as to how much UC you're entitled to.

    May i ask what elements of UC you're receiving please? Do you also claim PIP daily living or DLA mid/high rate care? Do you work at all?

    Do you claim DLA for any of your children? and are they all in full time education?

    Sorry for the questions but i can't help you further without knowing more details.

    If you don't want to give that information, i'll completely understand but you'll need to speak to an advice agency near you for a full benefits check.
    Community champion and 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.
  • lisaann76lisaann76 Member Posts: 13 Connected
    I get dla for me but use half of it for my mobility car.
    My 2 boys get dla and I'm in the prosess of getting it for my daughter as thay all have autism. 
    I'm on esa as I've not worked for about 10 years due to my ms.
    My partner works but he isnt on a big wage so we get money from UC
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    Thanks for that but more information is needed, sorry.

    Do you claim mid/high rate care at all?

    What DLA award do you claim for 2 of your children?

    You say you're claiming ESA but you're claiming UC, are you claiming Contributions based ESA? if so then you must be in the support group, is that correct?

    If you're not claiming contributions based ESA then you can't be claiming ESA because you're claiming UC. Do you receive the LCWRA element of UC?

    Please check your UC journal to see exactly what elements you're receiving because i can't help any further without know those details. If you don't want to disclose that on the forum then please get some further advice from an agency near you. It maybe possible that you're not receiving all the correct elements of UC.
    Community champion and 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.
  • paffuto10paffuto10 Member Posts: 388 Pioneering
    @poppy123456

     that's ok, didn't know if I needed to do something else  :)

    Thanks for helping x
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    You could also put all your details (and partners) into this benefits calculator and it will tell you what you should be claiming. Do be aware though that they are only correct if the information you put in is correct.

    Community champion and 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.
  • lisaann76lisaann76 Member Posts: 13 Connected
    My partner works fulltime but all the money he earns goes on care for me and kids.
    If he didnt work we would be better off coz we would get our rent and council tax paied
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    I wouldn't say you would be better off if he didn't work. If you don't answer my questions then i'm afraid i can't help you any further.
    Community champion and 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.
  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    Hi @lisaann76, how are you getting on?
    Community Partner
    Scope

    Tell us what you think?
    Complete our feedback form to help us to improve your community.
  • lisaann76lisaann76 Member Posts: 13 Connected
    Well my m.s is still the same but I did manage to get school trainsport for my daughter pending her echp .
  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    Glad to hear the progress about your daughters transport! I hope this really helps @lisaann76. :)

    I hope the EHCP process goes smoothly.
    Community Partner
    Scope

    Tell us what you think?
    Complete our feedback form to help us to improve your community.
Sign in or join us to comment.