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PIP Chanegover

ClaireHig

Hi,

I was previously in support group for DLA. But failed to attend PIP interview in April. I had put on my PIP claim that I wouldn't be able to attend as I had no one to go with me & can't go to new places etc. I even discussed being unable to go with my GP prior. But when I failed to go in April they asked why. I relisted my many reasons again. But they wrote back stating my claim was refused as they didn't accept I had good reason for not attending.

I sent in my request for them to look at their decision again. I don't have any actual evidence as I was only diagnosed in 2012 & have not been asked to see anyone about it since then.

The LA tried to remove my child 20 months ago. LA plotted to send her to live with my mother, who would send her to school (I've home/community educated my child since birth). I did have 2 psychiatrist/psychologist reports from this. But they were clearly fabricated to support the LAs plans & demonized me for having Asperger's. Yet not actually taking it into account. By alienating my normal actions, such as looking at the noisy road/clock during the assessment.

The original PIP decision/refusal was upheld.

I've been without my DLA since June. I've never had a social worker for me. Despite my child having had several for herself through the 10 years of her life. Even before she was born, as nurses questioned my comprehension/learning ability. Since being diagnosed professionals have often used this to claim my Asperger's puts my daughter at risk. Plus the blackouts I have. Which I think professionals list as panic attacks. Apparently it's fine for me to be at risk or for professionals to just assume I'm not.

The extent of adult social care support was an assessment that they first refused. And had to have children's social workers constantly force them to do- via my child's care plan. And they still took over 7 months, then 7 more as they had to repeat it. Only then did they tell me I must give them all my DLA care money & they would provide a few hours support each week. But no travel help. I told (emailed) them I couldn't afford to pay anything I needed that money for travel/aid/medication etc. Plus my ESA had stopped for many months, when I couldn't get to that interview. So what would happen if this happened again & I couldn't pay. They just said I'd refused help & that was it.

There seems to be no adult social workers where I live (Wokingham). I even tried to contact Bracknell but they refused to help as I don't live in their area. I had a floating support worker but due to time restrictions I've not seen him in over 4 years. I've had advocates, but they don't seem to achieve anything positive.

  • Hello Clairehig,

    I'm sure there are good things about You.  If your not happy about what you look like.  The only real thing any of us can do is eat well exercise.

     At the moment I'm surpose to be on that tip myself.  

    But have been having a really hard time trying to persuade my Housing Association to transfer me.

    Today I received a letter from them at my flat.  Even though we have been sleeping at my Mums due to others behaviour.

    I can relate to being lied about on record to.  I came to the conclusion only I will help

    myself. As for appearance  It's not about being thin it's about being healthy.  I'm thin but unhealthy at present.  What would help you to feel happier about you ?

  • Hi

    I'm glad that you have the confidence to care more about you, than what others may think.

    My appearance may in part be due to my fathers alcoholism. I'm shorter than all my family members. I'm very obese, so I've been able to make hormones for large breasts. Yet all my other features still aren't feminine, even my natural voice seems more male too.

    And I don't know why but whenever people look at me they seem to think I look guilty. Even in court, it was just assumed I was guilty (even without any proof). I haven't ever done anything wrong or hurt anyone. I don't even smoke/drink. Food is literally all I've done 'wrong'. Would it be normal to be hated just for being obese? I was treated with suspicion even when of a 'healthy' weight.

  • Life is difficult sometimes isn't it.  It's kind of your Mum to help with your Daghughter.

    My Mum use to help out with my Son who is 20 now.  

    Would you like to be able to travel to new places ? Or do you feel because of the blackouts your trapped in doors ?  As for the comments on appearance.

    Thats normal for some people.  I have had a barrage of not so flattering comments about how I look to.  Its said I'm androgenous excuse dodgy spelling. Too thin ugly etc.  I recently shaved all my hair off to.

    We can't all fit stereotypes of what society calls pretty.

    whats more important is who you are as a person.  Do you feel you look odd,Or do their comments hurt you ?

    Have you worked out how you feel about you.  its ok to be different

  • Hi Starstruck,

    Thank you for your ideas.

    I had listed things from here for the PIP claim already. And told children's social workers & my GP etc. But all it does is give them ammunition to claim my child is at risk. I then prove my child is fine & they go away. It's a never ending cycle.

    My daughter no longer has a social worker. The council failed during 2014 to take her & give her to my mother. They carried a child protection plan going for another 16 months, but finally gave up. I had to refuse to see them, as every time they visited (even if they didn't) they always fabricated risk to my child.

    I don't go to new places as I worry about getting lost. I cant usually find most places. I also find people who don't know me make negative comments about my appearance. And I can't be sure that there will be facitilies suitable for me.

    Recently my GP surgery has even started playing music in their reception. I think they feel it's soothing. Babies happily sleep through it. But I find it extremely uncomfortable. Not that I go very often. 

  • Hi ClaireHig,

    Sorry to hear you have been through all those things.  It's still worth trying to contact your Child's Social Worker.

    The best person to tell you how your affected by your ASD is you.  I would have thought this would have been summerised in your diagnosis.

     If not you can read about autism on this sight & note down the behaviour particular to you.  

    Which could make it easier for you to express to someone else.

    Can you explain to me what you find difficult about going to new places, if you don't mind ?

    Others may see your post & have suggestions on how they cope.

    Star

  • Hi

    Thank you for your reply.

    Citizens advice was the first place I tried, but they wouldn't communicate by email & I can't go to new places. I also tried to email the local mental health team, but they refused to communicate by email too.

    I don't have any friends or family who would go with me. I have my mother & a few freinds, but none of them would go with me. They won't usually accompany me when out either. They claim they're too busy. Athough my mother does take my child out. I used taxis a lot, when I could afford it.

    I don't have anything saying how my Asperger's affects me. In 2012 I had a basic diagnosis letter stating I have it. But there was nothing on it about seeing anyone else. It just said read aspergirls. I did & it was of no help. I've always accepted the way I am. The problem is I seem to be the only one who accepts me.

    The previous assessments were done for court. They twisted autism issues to negate my parenting ability. Yet they said nothing really about how it affects me. Because they were only really about my mother trying to get  my child into school. I wasn't even asked how my Asperger's affected me. They relied on false council records for most of their asssessment.

    After the court assessments were completed I asked for an independent asssessment specifically to assess how my Asperger's affect me. Ironically the NHS claimed during the court process that I couldn't have an assessment, as it may be used in court. After they said I couldn't have one as I'd already had those private assessments done for court.

  • Hi ClairHig,

    Citizens Advice will be able to give you advice on benefits & your rights.  I would reapply.

    Honestly you have to attend their interviews that's part of their criteria.  kindly ask your family member to attend with you Or a good friend.

    With my diagnosis I got a written assessment of how Asd effected me based on what I'd told the phychologist of my past/recent history.  Did you get this ?

    You could photocopy this & just black out anything that's private.  But leave in info that explains why you can't travel by yourself.

    Why do you think they demonised you ? Unfortunately sometimes people's stereotypes get in the way of them listening to what your trying to communicate must  be confusing to be told your health is putting your daughter at risk, but not having any support for yourself it's a contradiction.

     Probably to do with funding.  

    It would be safer if when out you & your Daughter have some one with you if your prone to blackouts.  

    You can ask Child Social Services because they are already involved

    To refer you for a needs assessment for yourself.  As a matter of urgency.  Again take a supportive person with you to all meetings, if possible.

    During this you can express the need to have someone accompany you when outside because of the blackouts.

    perhaps a trustworthy family member/friend could be paid  by them to help you.

    The helpline on this site or mind.co.uk may have suggestions on advocates in your area.

    Wouldn't advise writing where you live on any forum. Even this one. Be safe.

    Hope you get what you need