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Parents nightmare - Carers UK Forum

Parents nightmare

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This is a long post so apologies in advance. It is also a brief outline due to word constraints.
Hi folks, I have just experienced what is every parents worst nightmare and I'm distraught. My 25 year old son has Down's syndrome, ADHD and autism, has very high support needs and I have severe rheumatoid arthritis. Even though social services (Ss) were aware of our situation it took five years of 'fighting' to get respite care. Long story. Because of sons high support needs we were unable to find a suitable pa to take him out 4 hours a week, Ss refused to pay my daughter (who obviously knows him better than a stranger) as they said it is "expected" that she should care for him for nothing as she lives in the same house. Anyway, when he was offered two weeks respite care per year the offer of a pa was withdrawn, couldn't have both.
On our introductory visit we were shown around the large respite house, very dated, most TVs and DVD players in rooms broken (why are they there), very few toilets and bathrooms, old broken furniture etc. The first bedroom the staff showed me was ground floor with a fire door leading outside, I catagorically stated I did not want my son in that room as he wanders through the night and he would indeed 'escape' as he does that type of thing. On his first visit they showed us to his room, the very room I stated I did not want him in !!! Again I expressed my concerns. He was given another room. I assumed my concerns would be documented in his care plan.
On Friday he went for 3 nights respite and like all parents I enjoyed my time but was worried and anxious the whole time. On Sunday night at 8.20 we received a phone call from the police to say they has found our son wandering at the beach alone, very frightened and it took them an hour before he would tell them his name and address. At 6.15, two hours before, my daughters friend phoned her to ask if she was at the beach with her brother as she had seen him without a family member. My daughter assumed that he was with carers from respite and we didn't worry. Anyhow, I instructed the police to take him straight back to the respite unit where they had no idea he was missing. It turns out he had walked out of the UNALARMED Fire exit (which I had previously warned them about twice before), was missing for two hours and no one had even noticed. The care staff said she was doing the laundry and tidying the kitchen and thought Ricky was in bed (at 6.20 pm!!!!). I also have many other concerns and issues which I won't go into here. We immediately brought son home where he was very distressed, confused and distant. I have since suffered stress, chest pains, lack of sleep and anxiety causing my rheumatoid arthritis to flare up considerably. I do not need to explain how the outcome could have been so different. I am in the process of lodging a formal complaint against social services. So...... That's the end of respite..... Why don't social workers and carers listen when you tell them of carees issues, problems and potential risks!!! What to do now? We have booked a two week holiday for next year and now have no respite for son so we either have to take him or lose the big deposit and cancel our holiday.
I'm unsure where to go from here.... Any advice would be appreciated.
I placed my trust in social services who failed in their duty of care to provide a safe and secure environment for my son, when I had previously warned them of the potential risks in their unit. Obviously, none of my concerns were documented or shared with other staff and his care plan obviously hadn't been read by staff. Thanks for reading.
Lesley, I'm just about to go for my driving lesson but wanted you to know your post has been read and responded to. I also have a 25 yr old, different condition but someone who was almost impossible to place in a residential setting. She has not lived with us now since 2011 but if it's ok, I will drop you a PM later - your situation resonated with me. XX
Good post.
Put it in writing and complain to the Chair of social services and to the regulatory authorities in your part of the UK - you just need to put the boot in. Totally unacceptable.