1. General whinge...

    Posted by Grumpymoomin at Wed Aug 29, 2012 11:49 am

    Completely fed up.  Learning disabled son is 25.  He has been on a waiting list for supported housing for years but there is nothing pending.  He has spent the last 7 years enrolled on part time supported learning courses at the nearest college (15 miles away) and in day care provided by the LA.  I work 2 part time jobs for relatively low pay but which means that he is not left alone at home (it would be unsafe to leave him unsupervised).  Husband is a service engineer and cannot be relied on to be at home at any given time during the week.  My job options are therefore limited.
    The council are scrapping most of their inhouse day services and son is in limbo awaiting an alternative provider to be identified.  Ultimately this means he will have a whole bunch of new people - staff and other service users - to get used to and is likely to lose contact with most of the people he currently considers as friends.  College - where he has been happy and settled (2 days a week during term time) - have announced a change to their criteria for qualifying for discretionary rates for the cost of college courses.  Previously he was assessed taking into account his IB and DLA and paid a reduced rate.   Apparently now despite being 25 they will only consider a reducing the fees if the household income is less than a set amount (very low).  He is 25 ffs.  He is not a dependent in the strict sense of the word and is entitled to his own benefits. (Though for how long given the current situation regarding the reassessment process is anyone's guess).  He does not have £1000+ available  for college fees - and neither do I.
    Cue another call to the learning disability team to see whether they  will cover the cost through a DP - but in order to improve services he does not have an allocated social worker  (that's me being sarcastic in case it wasn't obvious) and this necessitates a call to the contact centre and yet another protracted conversation which will inevitably result in the wrong information being recorded and me having to make umpteen follow up calls and speaking to different workers every time I manage to actually to get through to someone (been there a got the t shirt).  Why is everything so bloody difficult?  My stress is multiplied tenfold by having to deal with different agencies who will not work together and who are generally incompetent.  Last time I contacted social services they made a mess of things - as  they have done on previous occasions.  I have v little faith in them at the best of times but having to be dealt with through a contact centre and the duty system is infinitely worse than having an allocated social worker.  Mencap aren't much better.  I feel that I am being  hung out to dry.  I imagine it is the same for most carers but things are definitely getting worse.  People outside of the system simply cannot believe the crap carers and their carees are having to put up with.  I cannot see an end to it and am at a loss as to know how to improve the situation.  Where is the support?  Statutory services seem to be bailing out and there is naff all out there as far as I can see.   Can anyone offer a shred of hope?  

  2. Re: General whinge...

    Posted by swissmiss at Wed Aug 29, 2012 12:13 pm

    I wish I could! You are right about Mencap..I tried getting advocacy from them and after several weeks of chasing and waiting the woman couldnt even remember my son's name and in true SS fashion claimed she had left messages when she had done sod all. We have tried several of their services and they are all crap! Music therapy where the support workers lined up along a wall and chatted rather than help, a friendship group where there was supposed to be activities but where they just sat around while she nattered and a games session where they sat around bored and asking to go back to their homes for lunch!
    The only pressure I can suggest is that you say that unless something is done you are not going to be able to carry on caring for your son? You do have to keep hold of a clear vision of what you and your son wants as they have strange ideas about what is acceptable. I dont know your son of course but have you considered a Camphill or L'Arche community for him..they vary a lot in terms of structure or degree of disability of the residents but they do have houses for 3 residents where they can go out to work or activities but aren't alone and there is an ethos of pastoral care and respect for the residents.
    I myself going by keeping hold of that vision and not allowing us to be abused. You will never get a Social Worker to act in an appropriate manner...God knows what induction process they go through or perhaps they carefully select people with no moral fibre or humanity?? The simple fact is that having children with LD means a total sacrifice of yourself or making a choice to sacrifice them.
    Karen :(

  3. Re: General whinge...

    Posted by Grumpymoomin at Wed Aug 29, 2012 3:20 pm

    Thanks.  As you say it seems to be a choice between sacrificing yourself or your child.  As much as I am angry at having my ambitions thwarted I cannot bear for my son to be unsupported and left open to abuse.  He is so trusting and vulnerable.  I would very much like to think he could go to a Camphill community or similar as I think he would thrive in such a setting but our Local Authority would never agree to funding.  Indeed they are trying to pull people back into the county who have out of county placements and their latest wheeze is to change residential care into supported living as this will allegedly 'give people more choice and control over their lives'.  That's right, the very people who are receiving support via the  council due to their lack of mental capacity and ability to make informed choice are to be given tenancies and a 'choice' in their support package.  As far as I can determine the support package involves having a revolving  door of carers coming in at specific times to do specific tasks.  Naturally what my son needs is to be left isolated and lonely behind his own front door and a sitting duck for the nastier members of our community (this is the same local authority that was supporting Gemma Hayter so you can imagine how much confidence I have in it).  But what's this I have been sent - oh, a list of   'safe places ' he can go to if he 's being targeted.  I despair, if appropriate support was given there would not be a need for hate crime reporting cards which are being posted to people with LD within Warwickshire County Council (no use to my son - he can barely read) or so called safe places in supermarkets.  Whoever is instigating this rubbish seems to have lost sight of the basic fact that this client group which is supported by the LA has significant learning disabilities and will have very little grasp of what all this crap they keep sending through is for.  It seems downright perverse.  Perhaps it is me not them and I have lost sight of what is reasonable....I may be cracking up. :cry:

  4. Re: General whinge...

    Posted by swissmiss at Wed Aug 29, 2012 9:23 pm

    It's a postcode lottery even though overall its not good. We had the director of the CTPLD come to our home and explain that the supported living wheeze is because they can then claim housing benefit to offset the costs of their care but they are making residential homes into supported living by creating self contained accommodation including kitchens but that the residents never use...a paper exercise it seems.So there are two versions of supported living...totally on your own in your own flat or in a dummy flat which in effect is a care home but surfices to fiddle the benefits system. The interesting thing is that the weekly charges at Camphill Communities are often quite low compared to local costs...for example if you look at the Devon community on the CQC website it starts at only £550 a week!
    http://www.carehome.co.uk/carehome.cfm/ ... 002015CAME
    I wonder if they would be so keen to keep it in county if they were saving money...so long as you dont demand fares to come home??? Have you talked to Camphill about it?? Alternatively an option might be to move to the county of the community of choice..if you can? We have been surveying counties for Autism as we are temporarily staying in my parents house and Warwickshire didnt come out good. Coventry area on the other hand seemed good? As did Northamptonshire.
    Karen :)
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