My son has complex learning, physical disabilities and is also autistic. He lives in a supported living setting along with 9 other people with varying degrees of ability. They each have single person flats under one roof and each has their own team of staff. My son has 24/7 support and receives a percentage of continuing healthcare funding to enable him to have two to one support twice a day for showering and other elements of his personal care. Over the years it’s been very hit and miss and as far as I’m aware he hasn’t had two to one support at all during the pandemic which is not only putting him at risk but also his staff. I’ve brought this issue up several times in the past but never had a satisfactory response and I feel I can’t accept staffing shortages due to the pandemic as a credible excuse as this has been an ongoing problem over several years. He has his annual review coming up shortly and I’d like to address this issue but need to know what my sons rights are so I can state my concerns based on relevant facts. Can anyone advise me on the best course of action please?
Regards, Starfish
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I know you are you his advocate but would it help if you had the support of him having his own advocate as well who could support him and you. Or could you afford to pay for a consultant social worker that’s what I had to do in the end as the problems I was having were to big for me to handle on my own. I can honestly say it was worth every Penny because the situation was resolved and he was moved and he in now safe and happy thank god. So that would be my suggestion you could also speak to the Mencap helpline as they maybe able to suggest something else if you didn’t want to do either of these things good luck .
Hi jofisher, how does one go about engaging the services of a consultant sw.?I've lost patience with my local council. They seem to be employing lots of agency sw on short contracts making it almost impossible to get proper insightful support or any meaningful action taken.
Any idea of the costs incurred to employ an independent practioner and do the councils then take note of the assessments and recommendations of these consultants? .
I paid with my sons money as it was for him at the end of the day, it was I believe around £150 an hour it was worth every Penny I can tell you. If you would like a number I can give you one and at least you can seek some advice and I could ask my friend what she did as she sort advice in another way as well just let me know. Yes they definitely have to take notice of your consultant social worker there would be no point otherwise.
Son has more complex shared funding. Daughter had her own care budget but no support since mid dec. Tbh I think I'm just scared if something happens to us that the system doesn't truly advocate for them.
There’s pohwer an independent advocacy service you could speak to as well or there maybe a local advocacy service local to you. It sounds like you have a lot on your plate if you have to children with special needs. What area do you live in ? Social services are so busy and under the cosh sadly. Continuing healthcare commission services and they are well aware there’s a gap in what they offer and they don’t provide what a social worker does so when there are issues like there was with my son they don’t have the capacity or time to deal with it so that why I had to deal with it and pay someone as the problems were to big for me and when my consultant social worker could then evidence how bad it was then continuing healthcare were able to go to their managers above and get funding to then take over the funding and they then started to pay for my social worker instead of me. I hope that helps I’m happy to answer any questions if that’s helpful but all situations are different aren’t they. I just hope your able to get this sorted
Hi. My son lives in a similar setting. Even though we're generally very pleased with the current care providers, staffing is so often an issue whether it's about numbers or quality, so I really feel for you. You might already have tried the following, but here are some suggestions.1. Talk to your son's social worker. If he doesn't have a named social worker, just ask to speak to the team with responsibility for adults with learning disabilities. Wherever the funding for care comes from, health or social care, the social care team needs to know if your son is being placed at risk.
2. Make a formal complaint to the director of the care company.
3. Report the matter to the CQC.
4. Get together with other parents/family members of residents and form a families'group which meets regularly with the managers of the setting. Together it's often easier to put pressure on. We formed one in our son's last setting and it was very effective.
Further to my last reply, here's a link to the statutory guidance. If the link doesn't work, just search for Care Act 2014 care and support statutory guidance.
HiMy son is in a Care home and is supported by CHC. However although we have Deputyship, the contract hours have been reduced without discussion, and although there is supposed to be specific hours 2:1 every day this has never happened. It is seen as complaining if we try to talk to the care home , and CHC team are not able / willing to monitor properly to ensure hours are supplied. Very difficult for us as we are on 28 days notice and if we ask too many questions the care home have warned they can give notice. CHC are not supportive or doing their job adequately- not enough time/ staff as usual I suspect.
There are quite a few posts on here about some very difficult situations. Please do contact our helpline if you would like to talk this through with one of our advisors. Call 0808 808 1111 or email helpline@mencap.org.uk.
From there, a member of our Information and Advice team will be in contact with you. Please be advised that we currently are experiencing a large number of enquiries, so we can expect to get back in touch with you within 15 working days.
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Supported living
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