supported living - poor communication with family

[Beansprout1]

Hi,

My daughter has severe autism and learning difficulties, she moved into a supported living house in April. We visit every other week to keep an eye on things and she seems well cared for.

The only problem is we don’t get any feed back as to how she is and what she is doing.

When I phone I get told yes she’s fine and that’s it. Many of the carers don’t speak English as a first language and are difficult to understand on the phone but seem very caring towards her.

I just wondered what other people’s experiences are and if this is normal.

Thank you

[Jofisher]

I am having to move my son from a. Residential placement because all the staff are on a sponsorship they lack any experience and knowledge of care they’re only here to earn money and send it home . The reporting and recording of notes is appalling that’s if they actually write any and they don’t understand epilepsy or autism or learning disability. It’s scary what’s going on out there in the care sector in the process of yet another safeguarding.

[Beansprout1 in reply to Jofisher]

Hi, thanks for the reply. I feel our problem is slightly different. The carers seem very good. Even though they can be difficult to understand on the phone it’s not a problem in person and they do seem to understand our daughter and her behaviours. The problem is I get no feed back between visits and have never seen any care plans etc

There is a house manager who I’m advised to contact regarding problems but she is never there and I think that’s where the problem lies.

I will raise this with her managers tomorrow.

[Jofisher in reply to Beansprout1]

You absolutely do need to bring it up with the manager good luck and I hope things improve once you’ve had the meeting.

[Beansprout1 in reply to Jofisher]

Thank you. I’m sorry to hear of your difficulties with your son’s residential placement. I hope his move goes well and he’s soon settled somewhere better.

It’s just all so difficult and stressful.

[Jofisher in reply to Beansprout1]

It is this will be his 4th move since leaving young epilepsy in the last 7 years

[Crawlmum in reply to Jofisher]

So true.... its been scary.

[Galwaybay2]

Have you asked for regular reviews where family, child and keyworker look at what the child is doing and how they are being supported day to day? Staff should understand that they are answerable to more than themselves and will give you a real sense of your child's care. My son has annual reviews and I am in regular email or text contact with them, which helps all of us. I would be quite concerned if a placement was not willing to communicate with me when necessary, to let me know what they are doing and consult me if required or when I can help them. You should not have to fight to know if your child is happy and supported.

[class9F]

My son is in supported living. Like your situation English isn’t the first language of many of the support workers and are difficult to understand on the phone. I get weekly phone calls from his keyworker but it took 6 months of me nagging the House Manager before it got sorted. There are 10 flats where my son is and some of the other parents also complained about lack of updates so it is now on the to do list for all families to get regular updates. My son likes the carers, some more than others and as with everything they each have their strengths and weaknesses. For example one carer is excellent at supporting my son to clean his flat and another is great at persuading him to go out into the community. However I do visit most weekends and follow up with emails to the manager if there are any issues. She normally delegates to the deputy but he is very good. My son calls his flat home now rather than the family home which took a while but he is obviously happy there. He is only a 10 minute drive away so I pop in on my way past sometimes without letting them know I’m coming and he is always OK. I think we will always need to keep a close eye on our loved ones. Unfortunately the pay in the care sector is not good so there is little incentive to go above and beyond.

[Shedman1]

Hi my brother is in supported living and I have also experienced poor communication from the staff. I was keen to know how his one to one hours were being used and was just given vague answers. Following a care plan review meeting including social services and community psychologist it was agreed the staff would complete a diary with my brother but this was never followed through - using the excuse my brother didn’t want to do it (even though he did when he was with me). Also in terms of health issues I was often told late in the day and after decisions had been taken. I have LPA but was told he has capacity so I have no right to know - even though the staff were making decisions about appointments and providing information to the GP.

Surely these homes have IT systems and could give designated family members access to see what’s going on? If not other ways of being more open and transparent need to be formalised and required by social services who commission these services.

[Blue4rose]

We have found that quality of supported living varies hugely, not only between different care providers but also different staff teams. If you get a team where the support staff work together it really helps. It has been harder to get effective communication with ourselves, but it is worth persevering with. Not only does it facilitate more effective support, but also parents will not be able to be involved for ever so it is important to establish good practices for the future. The managers are the first port of call, but also social workers should be aware of which providers are effective and should also be able to have some influence in improving services when they are not working as well as they should. I think all care staff are expected to read the support plan, but in practice it seems to be often ignored or forgotten, which really isn’t good enough. We have also frequent been fobbed off with ‘doesn’t want to do it’, and have suggested that one solution is to plan sessions beforehand rather than springing things on to people. This has worked much better for our son, who is much more willing to do things if he knows beforehand. Support staff should be trained to find ways to encourage those they support to do things but it is unfortunately often used as an excuse. Care providers themselves have some responsibility here for training staff.

[olive001]

I know this must be a really worry for you all. You can ask to see her Support Plan and care notes which staff should be completing this daily. Hope that helps. Take care and best wishes

[lecsmum]

They changed my daughters care company and moved her to another place, she asks me to visit but when I go she sends me away!

[Beansprout1 in reply to lecsmum]

Thank you everyone for your comments. I have emailed my concerns to the senior manager and they have both the other junior managers off sick at the moment.

There is an IT system which is in the process of being rolled out but they have no idea when the portal for family members will be available.

We are bringing our daughter home for the weekend so will ask to see care plans etc when we are picking her up. I think it will be a case of contacting our social worker next week. I do not have concerns about the care given but there does seem a level of incompetence with the junior management

[Oto3]

Hi, we are in the same predicament as you. Carers are kind and means well but the communication between the management and us is very poor. When our daughter called us in tears from her room, while she was on the phone with us, we phoned the manager to speak to find out what happened. The manager said she was with a one on one carer and there was an incident but she was fine. Well, clearly not... anyway we ended up hearing two different stories about the incident from the manager and the carer. We have been requesting better communication but so far no improvement. Social Services is also aware of this situation. She's moved in this supported living at the end of May. New place, new management, new carers ... we don't know who else to speak to or how to make the communication better.. lots of worries

[Dahlialady70]

Hi, my 36 year old son with severe autism and learning difficulties had to move into a supported living house after his residential home closed down last summer and I find exactly the same problem with feedback.

He comes home for 4 days every 10 days and that’s the only time I can ask the questions I have. Like you I also have difficulty understanding some of his support workers on the phone although they are caring so he’s very fortunate. I think they find it unusual that I like to be informed about his life including what activities he’s doing, where he’s going etc., as some parents don’t seem to be as involved. I also find the supported living way of life quite different to residential care as he’s given so much choice which I don’t think he’s always capable of understanding.

Like you we don’t hear from the manager much only if there’s an issue we need to discuss.

[lecsmum]

You have my full empathy I wear the same shoes!