respite care for very severe autistic

mummyroysof3

ill join you shegirl...and mine hasnt even started school yet

shegirl

mummyroysof3 wrote: »

ill join you shegirl...and mine hasnt even started school yet

It that case don't worry too much hun,it won't do you any good x

You have loads of time too so you never know how things will work out and there may be more help in a couple of years that'll make a big difference for you

Had to say that as I've seen many parents trying to plan and consider the future (some even deciding,no matter where on the spectrum that their child needs to be kept away from school,will be with them forever etc etc) from day one and end up depressed and struggling when they needn't be in such a place.Have a friend like that now and while half of me feels awful for her the other half wants to shake her out of it and make her realise things She's got herself in an awful state due to it and is seriously struggling with every aspect of life now.It's not nice to see

On the other hand some thoughts and planning can be helpful.I've never planned much for ds future apart from knowing I will care for him at home as long as I can and will have a separate living area built for him in my house so he has more space (as will I) when he's an adult.Nothing separate buy a space he can use to be on his own and do his own thing when he wants,where it's safe but I'm still there on the other side of the door/wall and he can choose which room to be in.

Aside from that,my only other current plans are to find a way to stunt his growth

pandora205

As a professional working in education, I think the issues with respite (and education) post school age are very common sadly and the transition to adult services can be fraught with problems. However, there is some hope for the future as the proposals regarding the reform of provision for children and young people with SEN extends the age and includes 'new protections for young people aged 16-25 in further education and a stronger focus on preparing them for adulthood'.
http://www.education.gov.uk/schools/pupilsupport/sen/a00213564/wms-sen-reform
As well as extending the age range for SEN support, there are plans for a single assessment by statutory agencies (health, social care and education). How this will all translate into practice of course remains to be seen.

carerof3

Hi Devizes18193, assuming you are in Devizes, then do you know of the Carer Support Centre http://www.carersinwiltshire.co.uk/ our local one has lots of information about local facilities and support groups where you can find out what other parents in your local area do in your situation.

My youngest son is like you describe however, due to me having two autistics and being a lone parent, he went to a residential school from the age of 7. He is now in a residential care home - it's the best thing for him as the staff take him out a lot and there are waking night staff etc. I was told that he would always be in 'nappies', as no consistency was possible when he was home what with school and two different respite homes all doing different things. However, his first residential school had him toilet trained within a few weeks of him starting.

My eldest who does live at home went from one 'tea visit' respite each week up to the age of 17 yrs, to 25 hours a week direct payments for support workers on his 18th birthday! I always thought that a gradual increase over the 16 - 18 yrs period would have been more helpful. We ended up being given all this money, but with no-one to pay! He's 23 yrs old now with 38 hours a week for support workers and two days at a work experience centre. He was away at residential college for 3 yrs, but now lives at home. I pay my parents for respite care, as you can pay family if they don't live in the same house.

You can get direct payments for a child, but as you can see it increases when the person becomes an adult. I also found the adult social worker that we had at first more helpful and she sorted out a few problems even before he was officially an adult.

Just realised I'm going to be late picking up son.

devizes18193

carerof3 wrote: »

Hi Devizes18193, assuming you are in Devizes, then do you know of the Carer Support Centre http://www.carersinwiltshire.co.uk/ our local one has lots of information about local facilities and support groups where you can find out what other parents in your local area do in your situation.

My youngest son is like you describe however, due to me having two autistics and being a lone parent, he went to a residential school from the age of 7. He is now in a residential care home - it's the best thing for him as the staff take him out a lot and there are waking night staff etc. I was told that he would always be in 'nappies', as no consistency was possible when he was home what with school and two different respite homes all doing different things. However, his first residential school had him toilet trained within a few weeks of him starting.

My eldest who does live at home went from one 'tea visit' respite each week up to the age of 17 yrs, to 25 hours a week direct payments for support workers on his 18th birthday! I always thought that a gradual increase over the 16 - 18 yrs period would have been more helpful. We ended up being given all this money, but with no-one to pay! He's 23 yrs old now with 38 hours a week for support workers and two days at a work experience centre. He was away at residential college for 3 yrs, but now lives at home. I pay my parents for respite care, as you can pay family if they don't live in the same house.

You can get direct payments for a child, but as you can see it increases when the person becomes an adult. I also found the adult social worker that we had at first more helpful and she sorted out a few problems even before he was officially an adult.

Just realised I'm going to be late picking up son.

I'am indeed thanks all. going through the links now

nlj1520

Hi, my son is 20 and is autistic with learning difficulties and challenging behaviour. He lives in a supported living setting. He rents a bungalow using Housing Benfit to pay the rent and has carers to make sure he is safe, educated and cared for. His current staffing si 2:1 waking hours and 1:1 overnight. This took a great deal of time, enregy and effort to set up, but he has thrived. There was no question of him staying at home post 15 because he was very violent to me and I was a sole parent. I am very closely involved in his life still, I helped interview his carers and regularly visit him in his home and go on activities with him.
There are schemes that provide staffing to take young people out to activities and be with them while they are there. Your social worker should do a proper assessment of needs and the cost of what is needed should not be an issue.
You could also contact the Challenging Behaviour Foundation. they have family support workers and a huge wealth of knowledge about what is achievable and may be able to help 'solve' some of the behaviour that challenges.
All the very, very best to you. the transition to adult services can be a nightmare that brings you to your knees, but there is help out there and people who can tell you what is possible.

zaksmum

nlj1520 wrote: »

Hi, my son is 20 and is autistic with learning difficulties and challenging behaviour. He lives in a supported living setting. He rents a bungalow using Housing Benfit to pay the rent and has carers to make sure he is safe, educated and cared for. His current staffing si 2:1 waking hours and 1:1 overnight. This took a great deal of time, enregy and effort to set up, but he has thrived. There was no question of him staying at home post 15 because he was very violent to me and I was a sole parent. I am very closely involved in his life still, I helped interview his carers and regularly visit him in his home and go on activities with him.
There are schemes that provide staffing to take young people out to activities and be with them while they are there. Your social worker should do a proper assessment of needs and the cost of what is needed should not be an issue.
You could also contact the Challenging Behaviour Foundation. they have family support workers and a huge wealth of knowledge about what is achievable and may be able to help 'solve' some of the behaviour that challenges.
All the very, very best to you. the transition to adult services can be a nightmare that brings you to your knees, but there is help out there and people who can tell you what is possible.

Maybe it varies from area to area but my sister's left no stone unturned in attempting to get something sorted for her son.

She's had very little success though and is starting to feel defeated by it all now.

nlj1520

zaksmum wrote: »

Maybe it varies from area to area but my sister's left no stone unturned in attempting to get something sorted for her son.

She's had very little success though and is starting to feel defeated by it all now.

It varies a VAST amount from area to area and I live in a not so good area, so had to have a lot of help to get this sorted for my son. It also seems to vary with who the funding body is. My son is health funded, but in other areas he would be Social Care (or whatever they call themselves now) funded.
The key seems to be (for me and my mum's network) to get help from people who know the system and the buzz words to use as well as the law. Possible sources of help are the National Autistic Society, Mencap, your sister's local branch of Carers UK, the Challenging Behaviour Foundation or her local advocacy service. The latter were particularly helpful to one of my friends who was all ready to take Social Care to Court to get her son's needs met.
Good luck to your sister..........it is possible, but it is exhausting, depressing and enraging. But worth the fight.

zaksmum

She has a social worker and previously a little help from Crossroads who have now backed out for safety reasons (the lad lashes out unpredictably while in the car) and she does realise this is dangerous while the car is in motion.

She's hoping a day placement will start soon but up to now he's still home all day every day.

His condition is way beyond autism - don't think there's even been a name suggested for what's wrong with him, poor kid.

shegirl

It varies greatly by area.

Day centres and such like have been closing down down here.

As for help from the local authority,to be perfectly honest unless you are willing to send them residential they seem pretty darn useless!

Like your son mine has challenging behaviour and is violent towards me,he's 13 at the mo with the strength of an ox!I'm also a single parent and have no family and friends can't help (infact I've had to become so isolated I only see friends a couple of times a year).

Ds is in a special placement in a special school with 2:1 and personally designed curriculum for 3 hours a day.He travels by an adapted bus (for safety) with 2 escorts (who won't be much cop given I had to jump in his bus this morning to calm him while they just stood back in a corner giving him free reign with the door wide open!!:eek:).

Then there's me caring for him entirely on my own the it other 21 hours a day (24 at weekends obviously).The only help I can get at all is one nights respite a week.

When I badly injured my foot and literally couldn't walk I phoned them for help with my son so I could go to hospital and because I couldn't care for him properly in that state.They wouldn't help.That is something I never want to experience ever again!

Due to a transport problem in summer we went 8 weeks without school or respite.It was absolute hell and his behaviour worsened due to loss of routine and everything else.I'm still recovering from it.Would social services do anything or provide anything?No they wouldn't.

They don't want to continue providing his respite transport much longer either,expecting me to learn to drive (when am I meant to do that?) and find a suitable car.

Myself and psychologist have asked for help finding an activity somewhere for him and carers to take him.Again,they haven't even bothered.

Turned down for direct payments.

Yet if I mentioned residential I can guarantee it would be done at the click of fingers!

Services all over are appalling for kids like ours Except for the woman up the road with a mild autistic who gets everything under the son.Funnily enough she works for the children with disabilities team!

I don't have any hope of the authorities providing anything for my son when he's an adult.No hope at all :,(

nlj1520 wrote: »

Hi, my son is 20 and is autistic with learning difficulties and challenging behaviour. He lives in a supported living setting. He rents a bungalow using Housing Benfit to pay the rent and has carers to make sure he is safe, educated and cared for. His current staffing si 2:1 waking hours and 1:1 overnight. This took a great deal of time, enregy and effort to set up, but he has thrived. There was no question of him staying at home post 15 because he was very violent to me and I was a sole parent. I am very closely involved in his life still, I helped interview his carers and regularly visit him in his home and go on activities with him.
There are schemes that provide staffing to take young people out to activities and be with them while they are there. Your social worker should do a proper assessment of needs and the cost of what is needed should not be an issue.
You could also contact the Challenging Behaviour Foundation. they have family support workers and a huge wealth of knowledge about what is achievable and may be able to help 'solve' some of the behaviour that challenges.
All the very, very best to you. the transition to adult services can be a nightmare that brings you to your knees, but there is help out there and people who can tell you what is possible.