‘How do you stop grouped activities that mean everyone arrives and leaves at the same time?’

In my last post ‘The secret to writing a #NoBedTimes Rota’ I shared the story of the management and staff team at Brighton based charity Grace Eyre and how they’d unlocked the secrets to writing rotas that enabled the people that they supported to be able to live the lives they want.

In response I had an email from a mum asking a frequently asked question, and it’s a frustration that we hear often. That issue being how people with learning disabilities are being grouped together to go out to an activity (or grouped together to not go to an activity at all) meaning everyone has to leave at the same time. People’s lives are being governed by a rigid system that support staff seem unable to challenge and in the process have created institutionalised behaviour. (That will be the topic for a post in the near future).

How this equates to ‘person centred’ support I have no idea.

At Stay Up Late I always say we don’t have all the answers, but we do ask a lot of questions when we know things aren’t right, or aren’t working well. So I put out the mum’s question to our Facebook Group and our new Mighty Network group to see what ideas you all had.

Here’s a summary of your ideas for sorting out this problem…

A question from a family carer:

‘My son is in a shared household where individuals have very little, or no 1:1 support hours (which is rigidly timetabled) which means everyone stays in or everyone goes out to the same place and all leave at the same time, ready or not!’

We asked

Does anyone have any ideas/tips for how such a situation could be challenged and changed?

• Request his right to a direct payment to employ his own carers to give him an ordinary life
• You could look at getting a community connector referral from care manager, they can often help with accessing things and helping with travel training for people who are able to go out without direct support, or maybe a gig buddy?
• Surely each individuals funding comes from their care and support plan so the individual hours should be stated in those? Unless it’s a privately funded place. It’s not acceptable that the care agency/organisation lump their hours together and rota staff that way. If that’s the case then I’d contact the local adult social care team because that’s not ‘person centred planning’ it’s putting the rotas of the agency at the centre. Does your son have direct payments or is the care funded directly from local authority?
  Also do all the household members need support with them all the time? Is it ok that some stay home while others are out? Does everyone need support to travel or could some bus training, taxi use (we can track on an app if needed) etc free up hours?
  What happens if someone is ill and can’t go out?
  Could be time to change providers?
• If he’s in receipt of PIPs is their any way he could use some of it to finance a care micro-provider to support him personally, or even a couple of the people clubbing together to pay for one? In Somerset the set rate is currently £13.35 per hour so not too high .
  I’m assuming there’s a reason why Gig Buddy’s can’t assist ? Is there a Gig buddies project local to him, this would certainly seem to be the best option. [editors note – we’re not sure if he lives near a Gig Buddies project.]
• I would ask for a new assessment of his needs and make sure you and he have a voice in that out of that should come a person centred plan and a clear idea of the hours of support allocated to him. Ok for hours to be shared but most should be around him and his needs. Start with service manager then up the intervention if you don’t get anywhere. CQC / social care commissioning team/ social worker.
• Speak to the manager and suggest it’s institutional abuse.But it all boils down to funding.
  Unless he’s funded for 1:1 hours he won’t get 1:1 hours.
• Is there a social worker involved? You could report it to safeguarding, it’s is institutional abuse.
• If you can’t get the funding for 1 to 1 hours have you considered recruiting a volunteer? There are all sorts of schemes running, one that springs to mind is Gig Buddies who basically recruit a volunteer Buddy to support people to go to Music events and shows to enable people to go out without restrictions of staff Rotas.
• Get aspirations factored into “needs” as it should be. Mental wellbeing as well, and wellbeing is a real buzzword just now so opens ears in the less clever service assessors and providers who are happy to follow a trend. That can be to your advantage……..
• Sounds like organisational abuse, task led not person led.
• Ask the social worker for a referral to an independent advocate under the Care Act 2014. Where are you based? This is not personalised care.
• Ask what the budget is for your son and how it is being used in terms of hours of support acknowledging within a supported living situation there is always some shared support alongside some individual support. Once you know this then you can start to plan with your son to do the things he wants to and the provider should support this. If not discussions need to be had!
• This time last year I was emailing our local authority pretty much non stop on this very pressing issue of pooled resources which didn’t get resolution. A major factor in the failure of my son’s placement. And god knows how the money went as it appeared to be costing £100k per year for the placement.
  Also no info given on this prior to take up of placement!! I put a lot of effort into persuading them to organise a cinema trip
• Try the area manager of the company or someone higher and keep going above them
• Could be argued that this is a deprivation of Liberty so social services would need to complete a ‘DOLs’ assessment (which could mean that they push for change in that service as DOLs are very very long and should be avoided at all cost!!)
• Seems totally wrong to pool people’s support hours and choose what to do with them like this.
  I would want to assess:
  – where he actually wanted to go out
  – if he needed support to go out to these places or if he could be taught or encouraged to do this independently or with less support (e.g. mobile phone?) or through a voluntary scheme like gig buddies
  – at very least staff should be discussing what each individual wants to do and where each individual wants to go each week and with who and planning support as fairly and flexibly as possible around that. Perhaps some could have a cooking or other activity session at home whilst one goes out with 1 to 1 support.

And from our Mighty Network online community

• This is so wrong, how can there be no personalisation! Speak with the management and if its not quickly remedied, report to the local authority’s (Quality Team – Social Care) and CQC. If your son has a social worker I would contact them too. Good luck.
• I am afraid we are in a similar situation. Have talked to management but the always a slick answer and do nothing.  I can’t bear how small her life has become since  leaving education. Interested to see .
• That is so awful. Before your son moved there did he have a Care Act assessment by a social worker which looked at what support he needs? You could contact the team and ask for a copy of the assessment and ask how many 1:1 hours he should expect to receive each week within his ‘support package’. You could also request a review of his support and explain that the issue of not accessing 1:1 hours needs to be addressed in the review.

Thanks to everyone who contributed to this and I’ve sent a summary of your ideas to the mum who emailed me, I hope they will be really useful for her in fighting for what is only right for her son.

We’ve also written a downloadable guide to writing flexible rotas and we’ll be adding more resources like this to the new resources area on our website.

And finally don’t forget to join more conversations like this by joining our Mighty Network.

PaulR

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