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Don’t know where I stand

CarrieanneCarrieanne Posts: 8Member Listener
I’m sorry if this is off topic but I’m lost, confused and very depressed about our situation right now and have no one to turn too. 

I have 3 boys living with me in a 4 bed private rented house, 2 boys are special needs but one of them who is 20 in April has got out of the net somehow. What I mean is he was born with a genetic condition and has been under a geneticist until last year. He’s around 4 years behind, has speech and language problems which are so severe that no one that don’t know him can not understand him. It’s hard for me too yet I live with him and got used to it. He will get so frustrated he goes off on one which he’s done for years. He has another problem that no one understands, my other sons geneticist wrote a letter explaining why the council can not hone me in a 3 bed house ( this problem is severe) I can not for personal reasons have my 20 year old share with my 15 year old son, it wouldn’t be fair on him or me. I need advice on this matter before I throw in the towel. 
My other disabled son sleeps on a medical bed due to his scoliosis ( due to have spinal surgery) 
my big problem now is my two eldest is still in College on full time courses but the 20 year old has to do an extra year because of the difficulties he has in his 1st year. He’s Child Tax will stop along with Child benefit which takes him off my claim altogether. I work part time along side being their carer and my working Tax has dropped frantically too. My rent is £1150 a month which I’ve paid for 4 years. Housing benefit will also go down due to the boys ages so I’m lost to what to do now. 

My 20 year old has been for jobs but his speech and language is letting him down. I’ve tried pip after his DLA stopped and was denied. How is he supposed to get on with life with the problems he has? 

Advice please and sorry i couldnt write the other oroblem has its too personal personal to share on here

Replies

  • JennysDadJennysDad Posts: 2,308Member, Community champion Chatterbox
    Hi @Carrieanne. I've just responded to this in a message and am trying to find someone who can help you with these particular issues. I'm still here, still listening.
    Warmest best wishes to you,
    Richard
  • GeoarkGeoark Posts: 1,010Member, Community champion Chatterbox
    Hi @Carrieanne that is a lot of issues to be trying to cope with, I am not surprised you are confused.

    Scope have a fantastic helpline and a huge support network they can turn to if they don't have the answer - 0808 800 3333 or if you prefer you can email them at [email protected] you may want to consider the email route first as this will allow you to get your problems and concerns down and will give the support team time to get some answers for you and then either respond to you, or arrange a phone call so they can discuss them with you. It would allow you to give more details and avoid forgetting something.

    When your son was turned down for PIP did you ask for a mandatory review followe by an appeal? Unfortunately a lot of people are being turned down for PIP but the success rate at appeal remains high. DLA and PIP are very different and it has to be focussed on the criteria which can be found at https://www.benefitsandwork.co.uk/personal-independence-payment-pip/pip-points-system As no award was made you can restart the claim process at any time.

    I hope you get answers soon.

    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!

  • CarrieanneCarrieanne Posts: 8Member Listener
    When we both got turned down I went straight for the MR but if this fails I don’t think I have it in me to proceed to court. I don’t want to be made to look a fool because of what I’m going through right now. It’s just that I know my son is not capable and written that down on paper but it gets overlooked every time. It’s not normal for a 20 year old to have the oroblems he has and no one will help him not even with medical notes handed to them. I do all his calls and go to job interviews with him (surely that is not right on it’s own) he can not make a journey by himself, I drop him off at the same bus stop (he would get confused if the bus stop was moved) he then sits in a bus out of the way and looks for his stop to get off. Then he walks 5 mins to the College grounds. He has 1 to 1 help whilst in college. He does not go out, he has no friends. 

    Me on the the other hand has all kinds of health issues including angina (diagnosed after the 2nd heart attack) I’m constantly in pain due to nerve damage which is also on the front part of my brain causing memory loss. I work part time but most of the time I have to sit down due to being breathless. I hate not being able to do the things I used too. I also look after my other disabled son which was born 19 years ago with noonan syndrome and it’s been a hell of a long ride for me. My 15 year old son I had to take out of school to look after me which I know is not fair on him but I couldn’t get the help I needed
  • CarrieanneCarrieanne Posts: 8Member Listener
    RichardVR said:
    Hi @Carrieanne. I've just responded to this in a message and am trying to find someone who can help you with these particular issues. I'm still here, still listening.
    Warmest best wishes to you,
    Richard
    Richard I can’t seem to find your messages now 
  • JennysDadJennysDad Posts: 2,308Member, Community champion Chatterbox
    Hi @Carrieanne

    There's a note on my page that says you have 'left the conversation', which may account for it. Thee is nothing new in the message anyway - @Goark is the guy you want to listen to. And I'm still seeing your posts, so I can get back to you if anything useful comes my way.
    Warmest best wishes to you
    Richard
  • GeoarkGeoark Posts: 1,010Member, Community champion Chatterbox
    @Carrieanne there is little chance that the MR will reverse the decision. The government depends on people like you to drop the matter, for whatever reason, so they can lower the money they give to people who need it.

    Every 65 people out of 100 who go to appeal win their case, this is the average it is much higher for those who choose to attend the appeal rather than depend on a paper decision.

    This is money you and your son are entitled to and while the reward would not change what is going on it would go some way to taking some of the stress out of your lives. Please don't be so quick to dismiss going to appeal.

    Can I ask have you asked for the reports produced by the assessor? If not I would suggest you do so. You don't have to do the appeal process on your own, CAB and some others would be more than happy to help you put the case together and most people have not found the appeal hearing as hard as they thought they would.

    Please do get in touch with the scope helpline, the number is free, and talk through your options before making your mind up.

    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!

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