run out of steam and not sure what to do

[lorryw]

Im not sure if many of you remember but we were going to place our son (24) into a residential care home. I think we had become so weary of trying to deal with social services and our lad that we felt it was the best option at that moment.

 

We had some long awaited respite (we have never had any) and felt a 100% better. An unannounced visit by us to the care home raised alarm bells in our minds. We sat in a locked office for an hour whilst lunch was taking place and then quickly shown around. We had been told that the youngsters went out and about in the community but at least 2 of them were still in bed with staff posted outside rooms. I tried to speak to one of the staff but she didnt speak English. We felt uneasy and told SS we wouldnt be sending him. Our social worker was furious and very unprofessional and told us we wouldnt get any more respite and anyway our son wouldnt care where he was. We were very upset and made a formal complaint and now have a new social worker (yet to be seen).

 

Our local authority has suggested independent living but we have doubts about his safety in such a scheme. We cant bear the thought of him having to cope with lots of different staff and not having a voice to tell us if something goes wrong.

 

We are happy for him to stay at home but realise we have to have an eye to the future and wondered if anyone was aware of any other options for future care we can explore.

 

 

 

 

[oxgirl]

So sorry that you've had to go through this, lorryw, and I think you were quite right to make a complaint against the SW, btw. I have no experience of what you're going through, the only thing I'd say is that my niece works at a supported living facility and she cares so much for the people in her care. It's a house with about half a dozen older people with learning difficulties and my niece and her staff really do their best for them. I know it must be a frightening step, but there are good places out there with people who are really fond of their clients and work hard to give them a good quality of life. Hope you find a solution that works for you all. <'>

 

~ Mel ~

[cmuir]

Hi

 

Sorry I don't any specific experience of residential care, etc. I wonder though if this is a matter for your MP? I must say, I'm a big believer in gut feeling and I whole-heartedly agree that I wouldn't have sent my son there either. SS seem completely unsympathetic and unprofessional and in my experience, I've found SS to be utterly useless (we'ce received nothing either). This matter needs to be raised higher up the chain. I'd definitely contact your local MP.

 

Caroline.

[matzoball]

i don't know if this will help - but these guys investigate social workers and care homes conduct - which in this instance i really think you do have a case.

 

Conduct Group

General Social Care Council

Myson House

Railway Terrace

Rugby

CV21 3HT

 

Telephone: 01788 532 405

Email: conduct@gscc.org.uk

[baddad]

Hi lorry -

Sorry to hear your initial experiences have been so negative

I would echo Oxgirls post, though, and say that the quality of care varies enormously from place to place, and if residential seems likely at some point it's in everyone's interests to research and find the right place asap, rather than waiting for a 'crisis point' that leaves you less scope to manouvre...

Obviously I can't comment on the place you viewed, and i'm certainly not suggesting your instincts are 'wrong' (that staff member having no way to communicate with her clients would scare the cr*p out of me too) but I think parents often have a difficult time when viewing residential placements because they are looking for a 'home from home' rather than a 'new home'... Finding a balance where the residential placement will give an individual room to grow and support them while they're doing that is the key. Don't expect that 'trust' to come all at once - look for a place where you feel it can be achieved rather than one where it seems to be on offer from the outset, because the latter is probably (after all these years of hands on care) going to be impossible to find. It would be a very strong parent indeed who would hand over their child (even an adult one) into somebody elses care without having some reservations.

 

Hope that's helpful, and that some long-term dsolutions come your way soon.

 

L&P

 

BD

[justine1]

Hi

I dont know if I will be much help.As mentioned above I think its worth looking at more than one residential home,can you do the search and then inform SS once you have found something you like?

I know you say you were uncomfortable and I know how you feel,I have had this experience with schools,I think its good to trust your gut feeling,but I do hope it wasnt because the worker cant speak english,I am saying this because I worked in a care home for six years and 90% of staff are foreigners(including myself) and at least 35% struggled with english,it was a problem when talking to residents but I must say most still provided excellent care,in fact some are qualified nurses in their countries,sorry I am not offending you ,just saying that you may find a home you like but it is very likely all the homes will have at least one worker who may not speak english.

 

Is there no way you can get direct payments and prehaps "employ" home help for your son,that way you know he is safe at home and you still get a break.

Maybe you can bring it up with SS.

 

 

[lisac]

Hmmm Lorry. I am in a very similar situation to you . Quality care for adults like ours is few and far between. I have found a number of residential places 'souless' and unatural. I've seen a few. At best, a 5 out of 10 service is what one would recieve. Not ideal for those with more complex needs.

If anyone knows of any respite or residential service that they would recommend please could they recommend them here . It would be very useful for parents in this position , x

[trekster]

Hello

 

Could he receive help at home to begin with then move into semi independent housing? Im in a housing scheme by advance. 10 hours per week (2 hours each non bank holiday weekday) i get a support person come in and help me with aspects of independent living, from shopping, cooking to understanding mail and working out what clothes to wear. "tomorrows big problem" and "taking responsibility" are excellent reports to read showing what type of housing and services autistics need.

 

i would say trust your instincts and well done for getting rid of that unsuitable social worker.

 

What worries you about independent living?

 

Alexis

[trekster]

So sorry that you've had to go through this, lorryw, and I think you were quite right to make a complaint against the SW, btw. I have no experience of what you're going through, the only thing I'd say is that my niece works at a supported living facility and she cares so much for the people in her care. It's a house with about half a dozen older people with learning difficulties and my niece and her staff really do their best for them. I know it must be a frightening step, but there are good places out there with people who are really fond of their clients and work hard to give them a good quality of life. Hope you find a solution that works for you all. <'>

 

~ Mel ~

 

That reminds me there is a 1/2 way house for folk in Clevedon, i realise thats too far for you but this is staffed 24hours a day.

So assisted living facilities that encourage independence do exist.

 

Alexis

[trekster]

Hmmm Lorry. I am in a very similar situation to you . Quality care for adults like ours is few and far between. I have found a number of residential places 'souless' and unatural. I've seen a few. At best, a 5 out of 10 service is what one would recieve. Not ideal for those with more complex needs.

If anyone knows of any respite or residential service that they would recommend please could they recommend them here . It would be very useful for parents in this position , x

 

 

i hear the priory group are good especially for non verbal kids. You could also look in Communication magazine for an autistic residential school/home.

 

alexis

[lisac]

Do you know anyone who attends and/or would recommend this service , apart from apearing in a glossy magazine ? Sorry, i was refering to lower functioning adults with autism over the age of 19. Not school age children or those needing a hospital environment with mental health needs., x

Edited February 1, 2010 by lisac

[Kazzen161]

Do they mean living independently or the Independent Living Fund?

 

My son is in supported housing - he gets tenancy support once a week and 6 hours of domicilary help - but he has already had a lot of help at his residential school and college.

 

There is a range of housing options - I went to a meeting where people from the various options could tell you about them (eg: it possible to buy a house that has room for carers to live in, if they are on certain benefits). Residential options vary a lot, so you need to investigate them all to see which is best for your son.

 

A friend has ILF and uses it to pay for a range of activities and support for her son (who lives with her).

 

 

[baranigirl]

OMG thats terrible, you have to feel in your heart that it is right for your son!

 

I work in a care home but for different kind of residents, have you seen what Royal British Legion could offer you and your son as they have a lot of schemes / jobs/ / houses etc in parts of the country that could suit you and your son xx

[Mumble]

the quality of care varies enormously from place to place, and if residential seems likely at some point it's in everyone's interests to research and find the right place asap, rather than waiting for a 'crisis point' that leaves you less scope to manouvre...

I think this is very true - my brother has been in a few care homes of various qualities and it's about finding what fits the individual. For my brother a smaller place has been much more beneficial - there's only four people living there.

 

I know the ideal would be independent living, but from your previous posts and this one, it doesn't sound like you're / your son is ready for that stage and it could be a disaster to push too hard too soon. My brother is taught independent living skills mainly through the daily/weekly routines in his home. So he is expected to make his own cup of tea for instance with help as required, the residents have a rota to help to choose what to cook, go shopping and help to prepare food so that these skills when repeatedly practised over years (and it will take years) may develop into something more independent.

 

As for daily activities, having a written programme has been the best thing for my brother - in one place they didn't have much in place and that's where things started to fall apart - now he has things he does on certain days and guidance to make decisions about how he fills his time / what he does on other days. It's important not just to look at the accommodation but how they integrate what happens there with whatever care-plan is being put in place, whether this involves day centres, college etc.

 

Looking for places - my brother's was done through social services and is funded by the LA but is a private home. If you Google Autism care homes you will find various groups which might get you started - I don't know how things work with choosing a place? Would you consider broadening where you look - again, I'm not sure what happens with out of LA placements and funding - my family moved so my brother is now a long way away but he's in a different LA to that funding him as they sought an appropriate placement. Young people do move away from their families and as you are looking towards independence, maybe it wouldn't be a problem having a bit more distance if it gave more choice.

[call me jaded]

Hi Lorry

 

Been thinking about what we need to do for our boy (now 15) when he leaves school in a couple of years. We're coming to the conclusion that he will stay with us for a while. He loves being at home and we can cope with him, so there isn't any rush. We'll look when our youngest daughter (now 6) leaves school, I think. There are a lot of changes coming through about the approach to adult social care and I would rather not be a pioneer (tired of pioneering) the new and wait until some of the groundwork has been done.

 

I've been looking at placements with my friend who found something ideal for her 19 y/o son. Talking to other parents who have chosen the same placement was very revealing. Though not without some teething problems, her final choice has worked because of their willingness to address all issues and hold their hands up when things weren't perfect. We looked at many places (it was nearly a fulltime job!) and there were huge differences, so my very simplistic advice would be take your time and keep looking.

 

Seriously concerned about the SW's attitude. Cynical maybe, but was she on a 'bung' do you think?

 

 

[trekster]

Do you know anyone who attends and/or would recommend this service, apart from appearing in a glossy magazine ? Sorry, i was referring to lower functioning adults with autism over the age of 19. Not school age children or those needing a hospital environment with mental health needs., x

 

If you are asking me, yes my friends son lived until recently in a Crediton home run by the Priory group.

Now he has to move, he is non verbal and prone to just walking off since he cant communicate to others his needs.

 

Alexis

 

[JsMum]

Im not sure if many of you remember but we were going to place our son (24) into a residential care home. I think we had become so weary of trying to deal with social services and our lad that we felt it was the best option at that moment.

 

We had some long awaited respite (we have never had any) and felt a 100% better. An unannounced visit by us to the care home raised alarm bells in our minds. We sat in a locked office for an hour whilst lunch was taking place and then quickly shown around. We had been told that the youngsters went out and about in the community but at least 2 of them were still in bed with staff posted outside rooms. I tried to speak to one of the staff but she didnt speak English. We felt uneasy and told SS we wouldnt be sending him. Our social worker was furious and very unprofessional and told us we wouldnt get any more respite and anyway our son wouldnt care where he was. We were very upset and made a formal complaint and now have a new social worker (yet to be seen).

 

Our local authority has suggested independent living but we have doubts about his safety in such a scheme. We cant bear the thought of him having to cope with lots of different staff and not having a voice to tell us if something goes wrong.

 

We are happy for him to stay at home but realise we have to have an eye to the future and wondered if anyone was aware of any other options for future care we can explore.

 

Pleased you put in a complaint and now have a new social worker, even though it is yet to be seen.

 

If you dont feel independant living will meet his needs just reliterate this in a letter, and request a suitable residential care home.

 

What about National Autistic Society they have a directory of Residential care homes spersifically for Autism, it might be a bit of a fight for funding but I dont think that would stop you trying to get the right home for your son.

 

My son is in a residential school and the respite is what helps bind us together at the weekends and holidays, the respite also has ment I can do things I normally wouldnt be able to do due to caring for Js needs.

 

What about Mencap too, they may know more spersific care homes, and they will also know more on who you can notify about the care home you visited.

 

I visisted a fair few special schools and residential schools, and I instantly knew that I had choosen the right school for my Js needs, for me it was a gut instincts, I saw how they cared about the boys and the residential houses where home from home, very safe, nicely decorated and lovely furniture, all clean and well kept, so there can be places out there where it is a home from home expereince.

 

I felt terrible when I saw some of the resi and day special schools as I felt uttley let down, but when I saw the school J is in I now I knew I had found the right school, it is sad that you experienced this one home, but I promise there not all like this.

 

Get intouch with Nas and OAASIS Im sure there is the right home for your son, its just a matter of finding it.

 

JsMumxxxx

 

 

 

 

[Kazzen161]

Been thinking about what we need to do for our boy (now 15) when he leaves school in a couple of years.

 

It is always advisable to put your child on the council housing list as soon as they turn 16. I did for my son, so by the time he left residential college at 19 he was at the top of their list for supported housing. Also make contact with social services, and try to get them to come to the transition reviews.

[lorryw]

Thank you for all your replies, lots of things to think about.

I think one of our main problems is we really have issues with trusting others to care for him. He is non verbal and therefore very vunerable. We have yet to find even a day service who can work with him (and us) without some major blip. He is also very happy at home but we realise that we wont be here for ever.

[call me jaded]

We've had holiday day care fall apart so many times, we've got to the point of thinking that there's really no point.* Despite all reassurances, every time we have a major blip. What we're thinking of trying now is having help come into the home. I can see this working for us and it may be the way we go later.

 

* the one exception is Activenture - DS goes every year.

[Kathryn]

Hi Lorry - I remember your previous posts when you were trying to decide what to do. I don't have any advice to add - I'm sorry, but I can understand your fears about leaving your son in a situation where you are not completely confident about the care being given. I hope you find something that's right for him - sorry that you're still facing so many battles after all this time. <'>

 

K x