Family, personal budgets, and waiting….

There hasn’t really been that much going on in terms of Dinky herself. She is currently calm and happy for the most part with flashes of meltdowns due to still having PDA, but 10 months out of the school environment has really helped her.

She is currently, massively into her lego and her disney infinity.

We have recently been back in contact with my brother, his partner and their 2 kids. We have even been up to see them, which is great because I hadn’t met my younger nephew.
The kids are 4 and 2 years old. It really struck me during our visit how alike the 4 year old and almost 7 year old Dinky are in terms of language, social skills and understanding.

There was a little drama (as there ALWAYS is where my family are concerned, this time it was…) about Dinky’s diagnosis. Apparently she isn’t autistic. I’m making it up.

Sure, the three paediatricians, two speech and language therapists, educational psychologist, social communication schools team, occupational therapist, and the special school and their teacher, speech and language therapist and occupational therapist… All of them, must be wrong because my mother and older sister, who haven’t seen either of us for nearly 5 years say so.

At first I was angry beyond all belief! I wanted to send my mother the details for the people who have seen dinky so she could phone them herself. However that probably wasn’t the intent behind what she said. The point was to further discredit me and make me sound horrible so that my brother and younger sister won’t see us. She likes everyone hating us (us being myself and my dad), why? You’d have to ask her, but even then you won’t get a straight answer as she is manipulative, selfish and an abhorrent human being.

So after my few hours of wanting revenge or to prove myself to her, I realised that just like with everything else with her I need to put it in the ‘no explanations for crazy’ box. Instantly I felt lighter.

Yesterday we had the social worker round to discuss the personal budget for Dinky. I don’t know why we had to wait a week, it could have been done on the phone.

They have awarded a sum of money, as it works out, there is enough for 4 hours respite a week term time, and 9 hours a week in the school holidays. There is enough to renew her merlin pass, and buy some sensory equipment and the rest is going to sit in the area we termed as ‘accessing the community’, which could mean any day trips, or special needs events can come out of her personal budget.

I was surprised that they awarded so much to be honest. However I’m not going to argue! The social worker told me that once the care plan is created we are to be moved under a new team, the one I have constantly said should be set up and finally is! You see, in our area we have the child disability team or child in need. Child in need is generally for children who need to be kept an eye on short term as they just fall short of child protection, and the child disability team, should actually be called the severe learning disabilities team as 90% of our counties disabled children wouldn’t meet their criteria.
So a new team will sit between them taking on the children too ‘complex’ for mainstream or even short breaks, but who are also above the 70 IQ remit for the CDT.

I’m disappointed in having yet ANOTHER social worker, but hopefully it won’t make too much of a difference once dinky is at school and the personal budget is set up as there will be nothing we need them to help with regularly, it will just be updating the care plan.

So another win for children in our area!

As for the school placement and the ADHD assessment from CAMHS, we are STILL waiting for answers and are no further forward on either front.

The LEA are ignoring emails and messages, from both myself and the social worker.
CAMHS are a law unto themselves- it has been 6 months since Dinky’s diagnosis, therefore the same amount of time that her ADHD assessment has been pending. At the moment I just want to say ‘no, have it your way, we won’t have the adhd assessment as it is not the main issue with Dinky and once she is in a school environment again, they can give up to date info on the possibility of ADHD rather than rely on a school who haven’t seen her for 10 months and couldn’t tell she was autistic or concede that PDA was the issue not me.’ However the social worker wasn’t in favour of that way forward and is going to chase them too.

So forever waiting…. As is the life of a parent to an awesome child with special needs!

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11 thoughts on “Family, personal budgets, and waiting….

  1. Hi there, I am struggling to get my son who is 6 a social care assessment as he is cognition levels are too high?! How do you ‘fight’ for an assessment when they point blank refuse??!!! He is at home schooled.. This is not elective I might add.. Another battle!

    • Hi,

      You may never get one depending on which area you live in. Have you tried asking for a carers assessment under the 1989 childrens act which was amended by the 2014 children and families act?

      Dinky got her social assessment in the most round about of ways.
      It took for the school to make up a pretty serious incident of over sexualised behaviour to get a social worker out and then when they did their section 47 assessment they realised that there was nothing sinister going on, the social worker was brilliant and highlighted all of Dinky’s needs outside of the section 47 but that now identified needed to be supported.

      So we had a Personal budget set up.

      Have you heard about short breaks/aiming higher?
      The local authority have a duty to provide these short breaks to all families with disabled children and the criteria here is middle-high rate care DLA

      Another reason we got the personal budget was because we couldn’t access most of the short breaks due to Dinky’s PDA. They kept turning us down, all we could get was 2.5 hours a month )5 hours during holidays.

      • Hi again,

        No I haven’t heard of short breaks/aiming higher. He has been awarded high rate DLA. We have similar problems with Kit accessing anything due to his PDA. The lack of understanding is shocking!!

        I will also look into a carers assessment!!

        Thank you for answering, it’s very isolating sometimes!! 😊

      • First port of call is short breaks or aiming higher, as social care would ask if you have tried that first. I have 7 letters from short break providers saying they can’t help.

        This should be on your local offer. If you type your local authority and local offer into Google it should come up with your local authorities local offer and short breaks/aiming higher ‘should’ be on there. Also a criteria for a social care assessment for a personal budget

  2. We have had an early intervention worker out who went through all of the options for short breaks, and she agreed they were not appropriate for Kit. But she still felt he was not eligible for ‘respite’ .. Personal budget etc

      • I haven’t heard of a family support team!! But Childrens disability team remain firm that he is not eligible …

      • We are only going under CDT now that Dinky has a personal budget as they have set up a team of key workers where families don’t ‘need’ a social worker- freeing them up for the more complex CDT or child protection cases

  3. I am really pleased to see that positive things do happen! I will continue to make some noise and hope that eventually someone will listen!!

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