respite care for very severe autistic

nlj1520

shegirl wrote: »

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 :,(

I really urge you to contact the Challenging Behaviour Foundation and ask for their help. They have family support workers who know the law, can provide information and someone to talk to who really understands your situation. I have on occasion ended up phoning the Samaritans who although wonderful, don't really understand what parents of children/young people like ours go through. I must decalre an interest here as I do do some work for the CBF though as an Expert Qualified by Experience not as a support worker.
Please call them, they will be able to help.

And have a hug from someone who totally understands.

Js_Other_Half

http://www.google.co.uk/url?sa=t&rct=j&q=continuing%20care%20assessment%20learning%20disabled&source=web&cd=4&sqi=2&ved=0CEYQFjAD&url=http%3A%2F%2Fwww.learningdisabilities.org.uk%2Fcontent%2Fassets%2Fpdf%2Fpublications%2FNHS_CHC.pdf%3Fview%3DStandard&ei=4-hYUKDbCe-10QWK_4CoCA&usg=AFQjCNFufuGaXIbQa23gyd2C3VWF3aSyfw details how health service assess for funding, which is separate from social services.

zaksmum

Mentioning residential care is something my sister refuses to do...yet it's the same old story. If you are seen to cope, you'll be left to cope.

It'd cost a fortune to put her son in care but she copes on Carer's Allowance alone. Now though with the sudden transition to the adult services - or lack of - she's at the end of her tether and I do wonder how much longer she can manage him. He's incredibly violent at times and she's just SO stressed by it all...and nobody in authority is remotely interested.

shegirl

zaksmum wrote: »

Mentioning residential care is something my sister refuses to do...yet it's the same old story. If you are seen to cope, you'll be left to cope.

It'd cost a fortune to put her son in care but she copes on Carer's Allowance alone. Now though with the sudden transition to the adult services - or lack of - she's at the end of her tether and I do wonder how much longer she can manage him. He's incredibly violent at times and she's just SO stressed by it all...and nobody in authority is remotely interested.

Yeah,I think you've either got to be a little clueless or sat crying all day to get anything!Coping doesn't mean it's good for any of us,it just means we can deal with it and push feelings away until later,if you don't become void!

Meanwhile others put themselves in certain situations and get help flooding in.Not right is it!

Sometimes think some just put our kids in the scrap heap before they ever stand a real chance.

SingleSue

devizes18193 wrote: »

Hi
My youngest 17 is now at the transitions stage.We want to keep him with us for as long as is possible ,he is non verbal and has developmental delay . Depending on the area this is between 2 -8 years .
The local council's day care centers reckon he is a risk to other users and don't want him . which while they might be right leaves my boy with next to nothing expect going around parks which with winter coming my wife and i are not happy about .

Has anybody been in this type of situation and how do you deal with it , Is the lack of centers for the very disabled a local or a countrywide issue .
Thanks

I have had the same problem but with much younger children. Social services were not able to secure any kind of respite care for the boys due to my middle sons extreme aggression as he would be a risk to the other users...and because they couldn't take middle son, they wouldn't take youngest son either!

shegirl

SingleSue wrote: »

I have had the same problem but with much younger children. Social services were not able to secure any kind of respite care for the boys due to my middle sons extreme aggression as he would be a risk to the other users...and because they couldn't take middle son, they wouldn't take youngest son either!

Seriously?That's ridiculous!Guess the one thing we have to be lucky for then is a respite centre that's equipped for that.That said ds violence is aimed at care givers rather than others in general.

To refuse your youngest aswell is a disgrace

Plumjam

Be careful when saying your children with live with you as long as possible. I'm also the mother of a disabled child who's going through transition (he's challenging but not violent). I'm hoping that my son will go to a 3 year residential college (like Uni - coming home at half term and holidays) but that when he's finished, he will live in the community in a 'supported living' house. My maternal instincts scream 'keep him with me always' but my head says that one day I'll be 6 feet under, pushing up daisies and I want him settled somewhere years before that happens. That way, I can have years of helping to get it right and when I'm gone, surviving relative (including his brother) can keep an eye on him and his situation without him being a burden to them.

JC9297

Plumjam wrote: »

Be careful when saying your children with live with you as long as possible. I'm also the mother of a disabled child who's going through transition (he's challenging but not violent). I'm hoping that my son will go to a 3 year residential college (like Uni - coming home at half term and holidays) but that when he's finished, he will live in the community in a 'supported living' house. My maternal instincts scream 'keep him with me always' but my head says that one day I'll be 6 feet under, pushing up daisies and I want him settled somewhere years before that happens. That way, I can have years of helping to get it right and when I'm gone, surviving relative (including his brother) can keep an eye on him and his situation without him being a burden to them.

Exactly our way of thinking.

carerof3

shegirl wrote: »

Yeah,I think you've either got to be a little clueless or sat crying all day to get anything!Coping doesn't mean it's good for any of us,it just means we can deal with it and push feelings away until later,if you don't become void!

Meanwhile others put themselves in certain situations and get help flooding in.Not right is it!

Sometimes think some just put our kids in the scrap heap before they ever stand a real chance.

I'm not clueless or sat crying all day. I don't take no for an answer, and write a good letter of appeal.

I spent many years 'existing', not living, while fighting for a residential school for my youngest son, surviving on about 4 hours sleep a night - they didn't sleep at the same times, and one didn't sleep much at all. I have now gained the knowledge about how to fight. There isn't enough money for everyone to get what they want, so if you need some help, you will have to fight to get it. It's the difference between 'want' and 'need'. I am probably explaining this badly, but lots of people 'want', and some really 'need', but to 'get' you have to stand out and be a fighter.

Surely no council will rush to put an adult into residential care costing approx £2,000 + a week, when they could spend a few hundred in direct payments? My argument was the unsuitable support living placement my council wanted for my son was a lot more expensive for the council taxpayers, being 24 hour care + housing benefit, than the £575 I needed for support workers/work training placement. We got the money. They had experience of me before and knew that my next step would be contacting county councillors regarding their wish to spend more money than was necessary. By refusing to threaten them with the costs involved with residential care you are doing yourself no favours in my opinion.

I agree with the above posters that it is necessary to think of the future, my elder son is learning independence skills at home, with semi-independent care (he has a bed sit in an extension), so he can learn the skills necessary to move out to a more independent placement. According to the council the only people available for him (aged 23) to share a house with were two men in their 40's who had spent their whole lives in residential care - this would have held him back in my opinion, and he would not be happy living in this situation. His communication is improving all the time since he left college, is beginning to learn to cook for himself (microwave) and he is now happy to stay on his own for an hour or so (like a 'normal' 12 / 13 yr old starting to be left on their own). If he was totally dependent, like my youngest, I would have wanted him to be settled in a residential placement where he would have a greater level of support and more activities, and a consistant approach to supporting him.

covlass

pandora205 wrote: »

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.

I was at a meeting at my dd school yesterday she is 16 will remain in school until 19, and stay at the same respite home which she attends every 7 weeks until the same age. There was a person from children's disability team and adult disability team as well as the schools connexions officer. Iwas told that all meetings will now be attended by some one from child's & adult disability team as well as health, so all people involved in my daughter are in agreement. Also I will be given a carers assessment at some stage, transition is a scary thing though I am dreading the time when my daughter leaves school, college is not an option they have already stated that.