PIP, DLA and AA
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Appealing decision for son's DLA

stacymichelestacymichele Member Posts: 4 Listener
I've have just been given the decision for my son's DLA and I don't agree with it, I don't know what other evidence I can give them as they don't seem to be listening. So my son is now 10 years old, he has learning difficulties, he is profoundly deaf, he has ASD with sensory processing disorder, he suffers with anxiety, he also has behavioural problems and now mental health problems ( due to trying to take his own life last year ). He is also double incontinent and has sleep problems ( so is up most of the night either because he struggles to sleep or because he has been incontinent). In the ASD report they have said they he functions at a nursery level age. He has no concept of danger and will regularly run out in the road or stop in the middle of the road as some thing has caught his eye.

So the decision I have been given is that he gets middle rate care and lower rate mobility. Does this sound right as I'm not sure he seems to tick the boxes for the higher levels but the DLA don't seem to think so ..... confused very tired mommy just trying to get support for my son.

Any advice would be greatly appreciated thank you.

Replies

  • steve51steve51 Community champion Posts: 7,175 Disability Gamechanger
    Hi @stacymichele

    Good Afternoon & Welcome.

    It’s great to meet today.

    I’m very very sorry to hear about your current problems with your sons “DLA”


    We have got some good info on “Benefits” here on our site.

    I have posted a link below for you on “Benefit’s”

    https://search.scope.org.uk/s/redirect?collection=scope-meta&url=https%3A%2F%2Fwww.scope.org.uk%2Fsupport%2Fdisabled-people%2Fbenefits%2Fadvice&index_url=https%3A%2F%2Fwww.scope.org.uk%2Fsupport%2Fdisabled-people%2Fbenefits%2Fadvice&auth=cS5QioUSKAAiHJ7Ut3EdBQ&profile=_default&rank=1&query=Benefits


    We also have some info for “Parents off Disabled Children” here is a link below for you.

    https://www.scope.org.uk/support/families-hub

    Please please let me know if I can help/support you further????
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @stacymichele   Pleased to meet you welcome.

    Thank you for sharing.  Sorry what has happened.

    All I can say you have come to the right place for support and I hope we can help.  I am sorry things are difficult and not easy to deal with.

    I am sure any of our community members who are Mothers have children with similar issues and problems will be in touch.

    Are you receiving any support.?

    Please can I say have you considering appealing. Understand how complex and confusing this may be. Have a look at our benefit information. Lots of advice, information, comments from our members.

    I would consider speaking to CAB as well for anything else. Knowledge of form filling and other advice related.

    Please can you have a look at our information on Talk about Specific conditions may be of use to you.

    Have a look for support at our information, comments from members under Parents and carers.  Also could be useful to look at.

    All I can say we are a friendly, supportive community that care and share.

    Please I hope you find the courage to go forward, I know how stressed you may feel . We are here as a community  We are here to listen when ever you wish to..

    I would add a member of our team you can speak to them 0808 800 3333. If that helps.

    One final point might be looking at speaking to your local MP. If you think that might be help. I know members have done so, regarding assessments.  Because they need to know MP's what is happening to families like yourself.

    Please take care

    Pleasure to meet you

    @thespiceman
    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
    Recipes
  • stacymichelestacymichele Member Posts: 4 Listener
    @steve51 hi thank you for the information I will have a read now
  • stacymichelestacymichele Member Posts: 4 Listener
    @thespiceman
    Thank you for your reply 

    You asked if I was receiving any support ... how do you mean ... I have to fight tooth and nail for any professional to help my son ... after he tried to take his own life I had to wait 11 months for counselling and then after 3 sessions they dropped him. I then sorted play therapy for him was initially told he could have it for as long he would ever need and then as they broke up for the summer I was told they have dropped him to with no back up plan so now I'm back to fighting to get the support my son needs for him mental health. 

    I tried appealing last year to be told I didn't have enough proof. Even though I had it documented from professional about his incontinence and sleep problem, yes at that point he hasn't had his ASD diagnosis but I do now and in that report it says he functions at a nursery level age even though his 10. In the psychological reports is says he isn't aware of danger. But this still isn't enough I have just got the letter from them this weekend but as it's bank hoilday I will have to wait til tomorrow to speak with them. 

    Thank you I will look into all them things you have mentioned.

    I never thought about my MP for this but it's definitely worth a try, the worst they can say is they can't help so I have nothing to lose. 

    Thank you so much for all your advice 

    Stacy 
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @stacymichele   Thank you for reply. I apologise I mean the support for yourself.  Your important too remember.  A valued member of this community.  As well as your son.

    Understand the post you have sent . I know and am sorry what you have been going through.

    I am not only concerned for the well being and health of your son. Also you as well.

    I have friends who have children and most of them have disabilities and illness.  Being with them constantly trying to get the help, support and mainly the right advice.

    Experiencing and seeing  friends and their children coming to terms with authority. The never ending questioning and constant battle with people who have more interest in their own jobs worth of a life. Lack of empathy and sensitivity.

    Been a rock.  To all and the families . I have met.

    I hope and pray you take care.


    @thespiceman
    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
    Recipes
  • stacymichelestacymichele Member Posts: 4 Listener
    @thespiceman

    Thank you for your concern, but no I don't have any support really, all my family live the other side of the world and after getting out of an abusive relationship I have trust issues, so don't really have any friends either. I have finally being able to break free of my ex husband  pressed charges and now stopped access to the children as he had been abusive to them. But I have all the court orders and protect orders in place so that's at least something. As a result of a lot the stress I now have a problem with my voice box it's doesn't work no more and I can only whisper ( it's been like it 3 years now ) I get on with things and still work full time to support my children. But when it comes to me raising my concerns for my children I feel like I get fobbed off as I don't have a voice so they don't want to listen. But I'm a stubborn madam and I never give in when it comes to my children.

    I manage and get through each day and my children's happy faces help me through. I suppose sometime having insomnia helps lol . ( sorry my dry sense of humour). 

    When ever I have spoke to a professional before about support they made me feel like I was failing my children. So I just take easy day as it comes now and fight through the battles I need to get the help and support my children need. 

    Maybe one day I can stop fight and live again if that makes sense 

    Thanx for your concern it really does mean a lot x
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