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  #21  
Old 06-06-2019, 02:38 PM
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Quote:
Originally Posted by adrenalin john View Post
We were very fortunate to find a great school for our son, its genuinely well resourced and brilliantly run & staffed - as you know Steve.

We didn't really need day to day support but what we prized was respite care so that we could go away, or go out. After 2 years of waiting apparently our application had been 'lost', in the end I complained and we received 20 nights a year which was great.

Then suddenly after about the 5th annual review it was taken away. Bear in mind the previous year they said we should get more nights because it was good for us as a family and good for him as helped in building independence as he gets older but that they probably couldn't afford it.

However, because it was a statutory right they couldn't just take it away that had to invent a reason so apparently his permanent condition had changed and it was for his benefit that it was taken away.

I was furious.

What had clearly happened is the department had been told 'we have to cut down provision to x' go and make it happen.

And you know what if the social worker had said look guys, you have a good home and good school for your boy, plus you aren't struggling financially I am really sorry but we have to make drastic cuts. You know what central government has done to council budgets and there are families in much more difficult circumstances to you - would you take a cut to help them, knowing what some other parents were going through we would have said you know what, it is a blow, but you are right others are in more dire need than us. I was a school governor at a special needs school at the time and I knew just how hard some parents had it and how challenging some kids were.

However to blatantly lie to our faces in the way they did just made me furious. I am still angry now remembering their lies and obfuscation.

On a perhaps surprising note, I am happy to report as soon as he turned 18 adult services have been brilliant and he is now in assisted living, doing really well and receiving his own benefits that meet his needs.
Great to hear that your son is now doing well.

Your post highlights how easy it is for laws to be made to give the impression that those with learning difficulties look like they are taken care of, but how that creates a major financial headache for local authorities that is impossible for them to meet.

As you say why are they not simply honest about it as we parents are on the whole pragmatic and most importantly, reasonable. Lying just adds to the stress and resentment and is totally unnecessary.
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  #22  
Old 06-06-2019, 03:10 PM
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Quote:
Originally Posted by adrenalin john View Post
We were very fortunate to find a great school for our son, its genuinely well resourced and brilliantly run & staffed - as you know Steve.

We didn't really need day to day support but what we prized was respite care so that we could go away, or go out. After 2 years of waiting apparently our application had been 'lost', in the end I complained and we received 20 nights a year which was great.

Then suddenly after about the 5th annual review it was taken away. Bear in mind the previous year they said we should get more nights because it was good for us as a family and good for him as helped in building independence as he gets older but that they probably couldn't afford it.

However, because it was a statutory right they couldn't just take it away that had to invent a reason so apparently his permanent condition had changed and it was for his benefit that it was taken away.

I was furious.

What had clearly happened is the department had been told 'we have to cut down provision to x' go and make it happen.

And you know what if the social worker had said look guys, you have a good home and good school for your boy, plus you aren't struggling financially I am really sorry but we have to make drastic cuts. You know what central government has done to council budgets and there are families in much more difficult circumstances to you - would you take a cut to help them, knowing what some other parents were going through we would have said you know what, it is a blow, but you are right others are in more dire need than us. I was a school governor at a special needs school at the time and I knew just how hard some parents had it and how challenging some kids were.

However to blatantly lie to our faces in the way they did just made me furious. I am still angry now remembering their lies and obfuscation.

On a perhaps surprising note, I am happy to report as soon as he turned 18 adult services have been brilliant and he is now in assisted living, doing really well and receiving his own benefits that meet his needs.
Thanks, John. Very positive to hear your experience of adult services - I think it's fair to say that it's not typical (a fairly common response to the DCP campaigns is "it's no better/it's even worse in adult services).

Respite care - or short breaks - are a massively important support for families, and one that is under threat in many areas and for many families at the moment. In the late 2000s, the government introduced the 'Aiming High for Disabled Children' programme, with a strong focus on respite/short breaks and the introduction of new duties on local authorities around short breaks. It was one of the best programmes the DfE (or DCSF as it was at the time) did in my entire 25 years there (and I say that as someone who was not directly involved in it). It made a massive difference at the time, but austerity has undone that good work.
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  #23  
Old 06-06-2019, 03:35 PM
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Quote:
Originally Posted by stevek View Post
Thanks, John. Very positive to hear your experience of adult services - I think it's fair to say that it's not typical (a fairly common response to the DCP campaigns is "it's no better/it's even worse in adult services).

Respite care - or short breaks - are a massively important support for families, and one that is under threat in many areas and for many families at the moment. In the late 2000s, the government introduced the 'Aiming High for Disabled Children' programme, with a strong focus on respite/short breaks and the introduction of new duties on local authorities around short breaks. It was one of the best programmes the DfE (or DCSF as it was at the time) did in my entire 25 years there (and I say that as someone who was not directly involved in it). It made a massive difference at the time, but austerity has undone that good work.
If you speak to parents, respite care is what the vast majority prioritise and prize above all else.

And yes we were led to believe that adult services was going to be a nightmare and much worse than child services.

As we ended up with literaly zero, zilch nothing, not even a bag of crisps of support from child services then you can imagine that our expectations were lower than a legless poodle after a large meal, but they have been nothing but great - to date.

(signed the thing by the way)
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  #24  
Old 06-06-2019, 03:52 PM
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Thanks
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Read more about it here https://cyclingtheseason.wordpress.com

And read more about Contact here www.contact.org.uk
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  #25  
Old 06-06-2019, 06:54 PM
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Adult services massively let our son down when he moved from camhs a few years ago although we are in central scotland. Exiled Stirling knows exactly what I'm talking about.

I've also signed. 7000 odd now
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  #26  
Old 06-06-2019, 08:35 PM
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Thanks - 7,150 now.
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@cyclingtheseaso

I cycled to and from every Palace Premier League match, plus four cup games, in 2016-17 to raise money for the wonderful Contact charity, who support families with disabled children.

Read more about it here https://cyclingtheseason.wordpress.com

And read more about Contact here www.contact.org.uk
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  #27  
Old 07-06-2019, 03:37 PM
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Quote:
Originally Posted by bubbs11 View Post
I’ve talked to Exiled Stirling a few times about starting up a thread on here about the subject knowing there were a few BBSers in our position - almost like a help group like the depression thread - but kept putting it off. Think deep down I’m a bit embarrassed about talking honestly on here about something that is so emotionally difficult.

Maybe this could be the thread.
I realised I didn't comment on this point. I think it would be great, if this could be that thread. The depression thread has shown how supportive BBSers can be of each other. Some of the comments from parents who completed the DCP survey are really bring home how hard it can be for parents where the support is not in place - that 'I feel like crashing the car' line in the film is sadly anything but atypical.
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@cyclingtheseaso

I cycled to and from every Palace Premier League match, plus four cup games, in 2016-17 to raise money for the wonderful Contact charity, who support families with disabled children.

Read more about it here https://cyclingtheseason.wordpress.com

And read more about Contact here www.contact.org.uk
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  #28  
Old 10-06-2019, 07:39 PM
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Bump.

Over 10,000 signatures now, but it would be great to double that. Here's the link again: To view the link you have to Register or Login
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@cyclingtheseaso

I cycled to and from every Palace Premier League match, plus four cup games, in 2016-17 to raise money for the wonderful Contact charity, who support families with disabled children.

Read more about it here https://cyclingtheseason.wordpress.com

And read more about Contact here www.contact.org.uk
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  #29  
Old 10-06-2019, 07:50 PM
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You’re doing a grand job Steve. With the amount of people on here, we really should as a group be able to bump up the campaign. It only takes a minute after all.
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  #30  
Old 10-06-2019, 08:13 PM
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Done ✅
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  #31  
Old 10-06-2019, 08:51 PM
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@cyclingtheseaso

I cycled to and from every Palace Premier League match, plus four cup games, in 2016-17 to raise money for the wonderful Contact charity, who support families with disabled children.

Read more about it here https://cyclingtheseason.wordpress.com

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  #32  
Old 10-06-2019, 08:59 PM
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10,229
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  #33  
Old 10-06-2019, 09:12 PM
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Signed. Surely this should be stickied?
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  #34  
Old 10-06-2019, 09:26 PM
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Stuck !
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  #35  
Old 10-06-2019, 09:26 PM
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  #36  
Old 11-06-2019, 05:24 AM
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Cheers
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@cyclingtheseaso

I cycled to and from every Palace Premier League match, plus four cup games, in 2016-17 to raise money for the wonderful Contact charity, who support families with disabled children.

Read more about it here https://cyclingtheseason.wordpress.com

And read more about Contact here www.contact.org.uk
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  #37  
Old 24-07-2019, 08:56 AM
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Great to see that the issue has made it onto The Sun's (erm) 'To Dude Pile' for the new Prime Minister. (Not sure I necessarily agree with all the other Sun asks, mind you.)

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@cyclingtheseaso

I cycled to and from every Palace Premier League match, plus four cup games, in 2016-17 to raise money for the wonderful Contact charity, who support families with disabled children.

Read more about it here https://cyclingtheseason.wordpress.com

And read more about Contact here www.contact.org.uk
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  #38  
Old 31-07-2019, 08:26 AM
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Rate of signatures has, unsurprisingly, slowed down - but last night it went over 18,000 which is a great response. We really want to get to 20,000 if we can before sending the letter to Sajid Javid in the autumn. So please sign if you haven't - To view the link you have to Register or Login
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@cyclingtheseaso

I cycled to and from every Palace Premier League match, plus four cup games, in 2016-17 to raise money for the wonderful Contact charity, who support families with disabled children.

Read more about it here https://cyclingtheseason.wordpress.com

And read more about Contact here www.contact.org.uk
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  #39  
Old 25-10-2019, 05:35 PM
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A bit of an update, if anyone's interest - we went to Downing Street today to deliver the letter. (I was left outside the gates as 6 is the max for these things) To view the link you have to Register or Login

We've not 'closed' the letter, so you can still add your name.
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@cyclingtheseaso

I cycled to and from every Palace Premier League match, plus four cup games, in 2016-17 to raise money for the wonderful Contact charity, who support families with disabled children.

Read more about it here https://cyclingtheseason.wordpress.com

And read more about Contact here www.contact.org.uk
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