Help / advice for mother of 20 year old with ASD and LD — Scope | Disability forum
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Help / advice for mother of 20 year old with ASD and LD

hope20 Member Posts: 3 Listener
Hello everyone. I am new here and I really need some help. My 20 year old son is receiving  continuing health care (CHC) funding ( very challenging behaviour ) and has no social worker . He attends a day placement  (5 hours a day , 4 days a week on a 3:1 staff ratio). While I am very grateful to have secured  CHC funding and am able to work for a few hours a day , I am still caring for my son for the remainder of the hours he is not at the day placement and he does not sleep and is noisy at night. 2 bedroom terraced house - the neighbours have not stopped complaining about the noise at night . My some has been through a lot in the past few years including a brain bleed and has lost skills but is in a good place such that the challenging behaviours are minimal. While his support workers a lovely and care for him , the manager/owner of the day placement is unbelievable.- There is no proper supervision or training  of staff / risk assessments/ record keeping , staff are blamed for everything and staff turnover is high.  He is very good at talking his way out of situations , saying the right things to professionals and making promises which are never followed through. I have concerns  that started off as small things but are growing into more serious concerns e.g I spotted one of the support workers in the bank when she was supposed to be in the 3:1 staff support ratio .  CQC do not  investigate complaints About service providers . CHC seem to be annoyed with me  and making me feel like I am being difficult/ petty  .    My problem is my son is settled and happy and we have built a good relationship with his support providers ( because I treat them like human beings ) but I know that this day placement will not do anything more for him and if he is not stimulated enough may lead to challenging behaviours. CHC are reluctant about me switching to PAs . Is that the best it gets / is the system that broken ? I know that have said a lot and hope I have made sense. Any ideas/ advice/support  will be greatly appreciated . Thank you  


  • janer1967
    janer1967 Member Posts: 16,473 Disability Gamechanger
    @hope20 Hello and welcome to the community, its nice to see new members here. I am sorry I don't have any experience to give you any advice, but I am sure some of our other members will be able to help. I just wanted to say hellp 
  • chiarieds
    chiarieds Member, Community Co-Production Group Posts: 12,478 Disability Gamechanger
    Hi @hope20 - Welcome to the community from me too. This whole situation must be so stressful for you, with you still having to give many hours of care to your son especially as he doesn't sleep (+ you have neighbours with little understanding!)
    It's very sad to read of the difficulties with the manager at his day placement, & of course you want the best for your son. It's great you have a good relationship with his support workers despite this.
    You also mention that you don't think his day placement will do anything more for him, which could be detrimental as far as his challenging behaviour goes. Have you raised this issue with the manager too?
    I wish I had some answers, but perhaps others may. Please know, however, that we'll all do our best to support you the very best we can. Please do talk here any time. :)
  • Ails
    Ails Member Posts: 2,256 Disability Gamechanger
    Hi @hope20 and welcome to the Community from me too.  It is nice to meet you.  I'm really sorry to hear about your present situation also as this must be very upsetting for you.  I hope within the forum that we can be of some support and help to you so please chat to us anytime.  All the best.  :smile:
    Winner of the Scope New Volunteer Award 2019.   :)


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