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Deprivation of Sleep Safeguards

August 25, 2013

Sleep is a bit thin on the ground in the Uxbridge house at the moment.

Steven is still pretty distressed about the move/non move and it always comes out at night time (usually about 1 in the morning). The meltdown can last from between half and hour to three hours, and even if I wanted to, it would be impossible to sleep whilst he’s in meltdown.

But I have safeguards in place – or so I thought.

On Sundays and Wednesdays, the support agency is contracted to supply a worker from 6am. This is to enable me to go back to bed after letting them in and to try and catch up on some much needed sleep. There is never a problem with Wednesday as the support worker stays on and does a full shift through to the afternoon. Sunday is different – we only need someone from 6 to 9. Until June 2012, it was never a problem – we had a regular worker who lived locally and he never missed a shift. Unfortunately he had to leave last summer and it has been a nightmare since getting someone to work the shorter shift.

In some respects I don’t blame the support workers. Who would want to travel across London for a three hour shift and get paid about £25? I am cross with the agency though. Today has been the second Sunday running where nobody has turned up and I’ve received the usual apologies from the agency. I want actions to speak louder than words.

The agency makes a 100% profit on every hour they provide support. For the two nightshifts a month, they make just under a 200% profit. I’m not sure of the exact figures but knowing the amount of hours they are contracted to do, they are raking in the money for themselves.

Perhaps they could pay the workers extra for working Sundays. Perhaps they could help the workers out with travel. Perhaps they could take the service they are meant to be providing seriously and not think that a weak apology lets them off the hook.

I’m left with the thought that I’ve got to wait another seven days before I can try and catch up on some sleep. I don’t expect any news on the housing front in the next week, so I’ll still have to deal with Steven’s anxiety, draining the tank even more.

I was meant to be going to stay with my friend last night but had to call it off as something came up that I couldn’t get out of. It is galling that if I’d have gone, I would have got my lay in. I also wonder what would have happened when the guy who would have done the night shift expected to leave at 6am but would have been stuck because his replacement hadn’t turned up.

Sometimes safeguards don’t work.


From → Social Care

  1. Tina permalink

    Hi mark and Steven – I’m sorry things are so hard for you right now. It is so hard to adjust to changes in routine for someone with autism and not getting enough sleep is the worst:(
    But I must say as an expat living in Australia it sounds like services are so much better in the UK than here in Aus (please understand I am not belittling what you have experienced)
    I too am a single parent and don’t have anything like the agency help that seems available over there and am considering moving my kids to UK as a result. My 18 yr old autistic son left school last November and it is a struggle everyday to make sure he is supervised at home – he has some funding for organised activities but it is usually my other school-aged kids who fill the gaps while I work to support us all. And I have to rent our house privately which takes most of my wage. It is catch-22 if I stopped work we could go on the 9 year wait list for a government house but if I try to better our financial situation we wouldn’t qualify. It sucks.

  2. Anne permalink

    I would think a great deal about coming back to the Uk for your autistic son, my son has just after years and years of pleading been assessed for Autism. Now they are saying yes I was right and yes he is on the spectrum – he is 41 years old! It has been a long and extremely stressful journey to get us to this point, with my son being misdiagnosed along the way or his problems being put down to LD. I work in a Special School so are with autistic children a great deal and things have improved unbelievable since my son was at school. However your son is also ‘adult’ so would be under adult services too. I have been refused a carer assessment as my son lives independantly (with a great deal of support from his family and ALL his finances being taken care of by me) as they tell me I do not care for him for enough hours! Be very careful, the grass is not always greener ! Good Luck Anne

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