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Struggling with the care my adult son is been given in his home (severe autism and LD)

Kazza78Kazza78 Member Posts: 5 Listener
Hi all, I’m Karen, 41 with 5 children. My eldest Jack is 22 and was diagnosed with severe autism and learning difficulties when he was 2 and a half. He has always required a rigid routine and when he turned 10 the school he attended (special needs but not specifically autism) could no longer meet his needs as the head of the school was incompetent. When my back was turned whilst his dad was at work he got out of the house on 2 occasions, purely because he saw an opportunity to have an adventure. My brother found him the first time, despite school letting him down badly he had been there and was found on his way home, luckily although he needed constant supervision he knew his surroundings. The second time my then 2 year old followed him out luckily he hadn’t got far but made it to the top of the road where there was a main road and a man on a motorcycle saw him and picked him up, thankfully he was a lovely man and waited with him until I got there, the police found Jack playing with a trolley outside Sainsbury’s. At the time we were getting no support for him and he wasn’t going to school and social care said after years of begging for help it was now a safety issue and placed Jack in a residential home/school for autism. The only catch was it was 3+ hours away in Warrington! It turned out that he thrived there and came home every other weekend and on birthdays/Christmas etc. I hated the fact that we couldn’t manage him and felt guilty for a long time. 

He had ups and downs as expected and a couple of years ago went through a tough time. He couldn’t sleep and hardly ate, then he told staff he heard voices telling him to leave, they didn’t know if it was his conscience or if he was hearing voices. They took him to the psychiatrist and she started him on a low dose of an antipsychotic, that same day he slept properly and started getting an appetite again. Gradually over that time he gained quite a lot of weight, he was very thin when he started the medication due to not eating much but had always been a normal weight before that. His size has got out of hand, he soon realised he was bigger than everyone else in height and weight and had more meltdowns and violent episodes, the low level holds they used to use no longer worked and as they were a homely home they weren’t prepared to have training for higher level holds as that’s not what they are about. Even the carers he’d known from a young age had no affect on his outbursts whereas if he saw them mid flow he used to stop. After an episode at the beginning of this year Jack said ‘you can’t keep me safe can you’ and at that point they called an urgent meeting to say that sadly it had come to the point that they couldn’t keep him safe as it wasn’t the right environment for him anymore. Then came a search for a home closer to the family home. He moved in June and I must say the only positive so far is that he’s closer to home! I question whether they are following his care plan half the time and they don’t seem to be doing anything positive to help with his weight situation. As far as I know he doesn’t have a psychiatrist at the hospital yet and I don’t know who the LDP team are. I have googled the GP surgery he’s at now and haven’t seen good reviews. I don’t have the same relationship with the people at the new place as at the other one, they used to listen to my suggestions and concerns now I find it hard for the staff to understand me as they have deep foreign accents and there is a definite language barrier, I think their attitude is ‘he’s an adult why do you need to know so much’ I do because although he’s verbal he doesn’t tell us much. The social worker is useless I’ve made a complaint about her and since then she has said he will have a new one from September. The manager of the home seems like a completely different person to the one that showed me round, I guess she has him now and doesn’t need to be as friendly as before. I don’t have power of attorney as he doesn’t have the capacity to make decisions and he has a deprivation of liberty, I am looking into becoming his deputy, as at the moment it doesn’t seem I have a say in anything. It was hoped that Jack would be able to stay at the other place indefinitely at one time they used to call it his forever home. Now Jack doesn’t understand what’s happening and has trashed his room, great big holes in the walls. I hate that I can’t have him at home he must be wondering why we have let him move there. 

Sorry for the huge essay, is anyone here in a similar position? I feel like a fish out of water and it feels like I keep finding something else out every time I visit him....

Replies

  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    Hi @Kazza78 and thank you for taking the time to share this with us all!

    It really sounds like you've been on a bit of rocky journey to get to this point and I understand how the change of environment could be stressful for Jack. Do you think he'd settle as he gets used to it?

    I will move your discussion into the Parents and Carers section to the forum, so other members will be able to provide their support and guidance.

    Please do let us know if there is anything else we can do to help :)
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  • Kazza78Kazza78 Member Posts: 5 Listener
    Thank you 😊 
  • April2018momApril2018mom Posts: 2,869 Member
    Hello. 
    Sorry to hear that. Can you get a new social worker or not? Can you find another care home or not? Sorry I have no experience as my son does not have autism. Have you contacted the NAS? Perhaps they can help advocate for him. 
  • Kazza78Kazza78 Member Posts: 5 Listener
    Thank you. I’ll be meeting his new social worker in September, I don’t know if he has a new one because the one he has stepped down when I complained about her or if she was made to. She already has people under her care that live in the home, I’m thinking I’d have to have a very strong case to have him moved. I have tried calling the NAS for advice on and off for a couple of years I can never get through! They’re good at taking my direct debit every month that I set up a long time ago, now I need their help they don’t answer.....
  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    I really hope the new social worker in September can be really beneficial for your son!
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  • April2018momApril2018mom Posts: 2,869 Member
    Good luck! Hopefully you will trust the social worker. 
  • April2018momApril2018mom Posts: 2,869 Member
    How are things today OP?
  • Kazza78Kazza78 Member Posts: 5 Listener
    Ah thanks for asking 😊 still fighting. On the positive side I should be able to talk to his new GP on the phone tomorrow about what will happen regarding his medication, weight gain and when he will have a new psychiatrist. Still no closer to knowing what’s changed regarding how the funding is different to how it used to be. They just say adults are expected to contribute financially to their care and there will be a meeting to discuss when its known how much universal credit he will get, he gets to keep £24 something a week, wow that will clothe him, pay for outings, podiatry, barbers etc that the funding covered completely before. I think it’s disgusting. Can see that us, his parents will be topping the money up. I think it’s really unfair and wonder if and when there would have been changes to his funding had he been able to stay where he was. Thank you for asking it’s very kind of you x
  • April2018momApril2018mom Posts: 2,869 Member
    No problem. What did the GP say? How are you today? I think that what is happening to the funding is terrible. I happened to read a article on it myself earlier this year. 
  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    I hope the GP was able to help :)
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  • April2018momApril2018mom Posts: 2,869 Member
    How are you today OP? Did the GP help or not? 
  • Kazza78Kazza78 Member Posts: 5 Listener
    Hi sorry for the delay. The GP has given us an appointment he seems to be keen to get his physical health needs looked at as a priority and to have his medication looked at to see it it can be reduced. The home could have done that but obviously didn’t see the need which is a red flag as far as I’m concerned but his social worker is adamant it’s the right place for him and with his complex needs he won’t be doing the things other lads his age do! What a silly thing to say! I know that but until about 9 months ago he was doing a lot more than he is now and I won’t accept that that is the way it is now. It’s like banging my head against a wall no wonder I have a headache tonight. Thank you for asking x
  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,954

    Scope community team

    It must be very frustrating @Kazza78, but I'm glad to hear the GP is taking his needs a bit more seriously.
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  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    Hi @Kazza78

    I cannot imagine how frustrating this is. I'm glad the GP seems keen and I hope this means that you are able to get somewhere with that aspect. I'm sorry to hear his social worker still isn't been as helpful as they could be!
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  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    Hi @Kazza78, how are you getting on?
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  • April2018momApril2018mom Posts: 2,869 Member
    Hello @Kazza78.  

    How are you? 
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