I really need some independant advice!!!

Hello, I have a 17yr old daughter with high achieving autism, who will be 18 in 2 weeks times. I will now try to cut this real short but really do need any advice if anyone can help.

My child was living in a 'care home' which we were all very happy with and she was very happy there. They have to leave this home before their 18th birthday so social services have moved her into what they call ' supported lodgings' this is where they can almost look after themselves but someone is also living in the house. Almost like being a lodger. My child has been in this house almost 4 weeks and she is not happy but she is still giving it a go. The lady who owns the house and my child are like chalk and chese, she says the lady makes her feel very intimidated with what is going on in the house. My child is this ladies first child to live there and she has no children of her own. There are a number of things that have happened but i won't go into these.

My child has now spoken to the social worker acting for the lady and she said she was very rude to her and basically told her she had no other option of where she lived. A meeting was arranged and it has been left that they will come back to my child in a few weeks, but they feel she must stay there longer, and this social worker also apologised to my child for being rude.

This social worker is now trying to persuade my child to go back to see a specialist to to be reassed, as she does not feel my child has autism??? My child has 2 diagnosis, one from Dr Gillain Baird at Guys hospital in London. We asked ' can you grow out of autism then lol' and she said no, but perhaps its better my child could get rid of the autism label? Basically this one person has suddenly decided my child doesn't have autism all of a sudden? They are slowly persuading her to be re assed, but how i see it, if they can take away the diagnosis of autism, they don't have to help her any longer. I am so cheesed off with this, they should be helping her not setting her back.

I my self have just only 6 days ago been told i have invasive *** cancer, and my world is crushed. My whole family has fallen apart at the moment and we are all in a great deal of shock. I find it such a shame that none of the social workers are giving my child more support at she goes through this difficult time, as i know she is terrified i am going to die and leave her.

I decided yesterday to ring my childs social worker and ask her where my daughter stands with moving to another supported lodging and also what options does she have, but the minute she answered the phone she was very off hand and abrupt. She started going on how lucky my child is to have the home she's in, and i know she's lucky but she is unhappy. Then she said to me ' i hear of your diagnosis' but i had not told her, the lady's social worker had rung and told her, and i anwered yes i have just been diagnosed with *** cancer, and she only went on to say to me ' can you give me proof of that!!!!!! I asked her to repeat herself and she said ' i want written proof that you actually have *** cancer. I almost fainted with the shock of what she was saying, i cant believe social services can be so callous. I asked her if she thought i was making it up and she could not find an answer straight away,she ummed and arrhged, until she finally said, i need proof so i can help your daughter. I said what difference does it make to my child and the way you help her if i have *** cancer, and she didn't seem to be able to answer straight away. She insist i give her the name of my McMillan nurse and her phone number etc, which i did, and then she said she wanted the details of my Dr which i also gave her. After this phone call i sat and cried my eyes out, i am so very very scared im going to die,and then the social worker says that to me.

Where can i get someone to help us both, someone who is not on the social services side, who will listen to what my child wants, who will confront why they are asking for proof of my illness, i don't feel strong enough to do all this, and i am due to go in for an operation an chemotherapy. Please advise.

This social worker also found it hard to believe that i already know im going to have radio or chemo therapy, she said you don't find that out until after your op, well my consultant has already told me im having this. What on earth are they playing at at social services, i feel they've really set me back. So sorry for the long post.

Advice please, Honey x

Parents
  • Hi Honeybea

    I'm so sorry to hear of your difficulties.  I do know how you feel - I was diagnosed with kidney cancer a couple of years ago.  I felt very scared.  It's a worrying time.  I was lucky in that we have 2 kidneys and my cancerous kidney was removed without the need for chemo.  However, my husband was also diagnosed with cancer the preceding year- stomach cancer.  He did have chemo and is now fully recovered :)

    The best advice I can give you about cancer is to stay positive and try to do everything you can to get yourself in the best of health.  I have a book called 'The Cancer Directory' with lots of information in it that you can borrow if you like - hpefully NAS can help us by putting us in touch so that I can send it to you in the post (we're not allowed to put our contact details on here).

    I agree with what everyone else has said re the social worker - you need to get her off your back asap.  Her treatment of you is appalling and very unprofessional.  I would be tempted to make a written complaint - but you need to pick your battles and thats perhaps not one to go with at the moment.

    I also agree with the recommendations that you seek legal advice.  A very good barrister is Steve Broach from Doughty St Chambers.  Steve really understands autism and the challenges it presents.  He's worked for the NAS and TreeHouse in the past, and also for the campaigning group Every Disabled Child Matters.  He is also a lovely person.  The solicitors Irwin Mitchell have a good relationship with Steve and they have offices throughout the country.  Mathieu Culverhouse works at the Manchester offices and you could contact him in the first instance (wherever you live - he can refer you to the nearest office).  If you want to do that, I'm happy to contact him in to let him know you'll be phoning - sometimes a bit of an introduction helps.  If you hook up with Mat and Steve, you'll be in really good hands.

    I think JaffaCakes is right that your daughter may well qualify for legal aid. A good tip from Xavi was to get everything in writing - instead of havng phone calls with the social worker, you could correspond by email - that way there is a written record of the exchange.

    The other thing to think about is getting support for you.  If you're lucky, there may be an active NAS branch in your area or an autism support group - it would be good for you to have someone who understands autism to share with and offload to in person.  You can look for your local branch or support group here:

    http://www.autism.org.uk/en-gb/directory.aspx

    Hope that helps - good luck and keep us posted, we're all here for you and in your corner.  xx

Reply
  • Hi Honeybea

    I'm so sorry to hear of your difficulties.  I do know how you feel - I was diagnosed with kidney cancer a couple of years ago.  I felt very scared.  It's a worrying time.  I was lucky in that we have 2 kidneys and my cancerous kidney was removed without the need for chemo.  However, my husband was also diagnosed with cancer the preceding year- stomach cancer.  He did have chemo and is now fully recovered :)

    The best advice I can give you about cancer is to stay positive and try to do everything you can to get yourself in the best of health.  I have a book called 'The Cancer Directory' with lots of information in it that you can borrow if you like - hpefully NAS can help us by putting us in touch so that I can send it to you in the post (we're not allowed to put our contact details on here).

    I agree with what everyone else has said re the social worker - you need to get her off your back asap.  Her treatment of you is appalling and very unprofessional.  I would be tempted to make a written complaint - but you need to pick your battles and thats perhaps not one to go with at the moment.

    I also agree with the recommendations that you seek legal advice.  A very good barrister is Steve Broach from Doughty St Chambers.  Steve really understands autism and the challenges it presents.  He's worked for the NAS and TreeHouse in the past, and also for the campaigning group Every Disabled Child Matters.  He is also a lovely person.  The solicitors Irwin Mitchell have a good relationship with Steve and they have offices throughout the country.  Mathieu Culverhouse works at the Manchester offices and you could contact him in the first instance (wherever you live - he can refer you to the nearest office).  If you want to do that, I'm happy to contact him in to let him know you'll be phoning - sometimes a bit of an introduction helps.  If you hook up with Mat and Steve, you'll be in really good hands.

    I think JaffaCakes is right that your daughter may well qualify for legal aid. A good tip from Xavi was to get everything in writing - instead of havng phone calls with the social worker, you could correspond by email - that way there is a written record of the exchange.

    The other thing to think about is getting support for you.  If you're lucky, there may be an active NAS branch in your area or an autism support group - it would be good for you to have someone who understands autism to share with and offload to in person.  You can look for your local branch or support group here:

    http://www.autism.org.uk/en-gb/directory.aspx

    Hope that helps - good luck and keep us posted, we're all here for you and in your corner.  xx

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