Hi,just to give you an update.Our son is 19 with severe brain damage,he is like an ambulant 9 month old.Both dh and I work.
He left childrens respite and is about to leave school.
To give you an update,one respite home for adults we stopped due to poor care,the other so far so good,but early days.Meanwhile we are under pressure to use ILF for care when he finishes school.We know other families who have day care,but SS are putting pressure on us to use ILF.I don`t want to,and Head of SS is coming to see us about it.I really resent this pressure we are being put under.There are lots of reasons why we don`t want to use it,loss of privacy,paperwork,carers not turning up,and knowing our ds loves a similar structure to school.Any comments would be appreciated.Personally I think they are letting Day Centres run down and will eventually close them like special schools,as the ss said they segregate and institutionalise.However when we visit them there is a good structured time table in place and they go out and about a lot.One or two are looking in need of refurbishment except for one.Another one is excellent but is for austistic spectrum only,although there are obviously people there who are not on the as but have sld like our son.10 weeks to go and nothing in place,can you help?

What is ILF?
I thouught it was 'Independant living'?

It is independent living fund which your child with special needs is entitled to at 16 provided they cost the local authority over a certain sum,about £350 a week,not sure.
They add up cost of education,respite,transport,dp and so on.
The vast majority of severely disabled children will qualify
local authorities love it because it doesn`t cost them a penny,ilf comes from the goverment.Therefore it is a cheap way of providing for disabled people .You have to give up part of dla,about half of the care component.Some people do love it and it really works well for many,but personally i would rather use a day centre.It is worth upto about £400 a week,so that pays for the carers for your child,rather than a day centre.

ah. We're hoping dd will live independantly with 24 hour carers that she will employ using Direct Payments. If she's not hapy with that, then a small group home. She has severe cerebral palsy so will need life long care but is cognitvely ok so will be expected to make her own decisions.
Friend of mine with severe CP has a rota of 4 carers so he has 24 hour help as lke dd, he has no limb function. Own flat and a job as a disability rights advisor. Sort of what I'd like for dd.
Does your lad have sensory impairments too? Sense run some fantastic residential homes.

hi up to last summer i worked in residential care and had alot to do with daycare centres. This is an area going through change, with lots of centres closing, the ideal is to shut daycare centres and use local amenities ie church halls allotments etc, often this ideal is not suitable for the more severly disabled, hence using ILF.
day centres can be great but they are not like a school environment, often they are short staffed and uder funded. If i was a parent i would be keen to look at the latest inspection reports and i would ask what the centres long term plans are - they should tell you if there i a likely hood for closure or redevelopment. Also one centre i know only took the well behaved!! out regularly and often to do the staffs shopping. A good centre is a great find out of the 4 that i had connections with one was great, one ok and two i would never recomend to anyone.

I'd want a place that gave the users dignity. Many places treat disabled people like naughty children or act like a holding pen till its time to go home again.
Thats not dignity.

I would agree but it would seem that dignity can cost too much at timesalthough there are some exellent people that work in care and o a great job, but lots including myself give up in the end when money comes before everything else.

o=do sorry feeding son and typing.

Hi Riven,yes my son has gone on sense holidays and they do run fantastic residential homes,I agree.I have thought about it a lot recently.
I`m glad your daughter is able to make decisions on her own and is able to say what works for her.We can tell if our son is unhappy or not,he will say he doesn`t like it but then appears to be fine so its a bit confusing but he does say a lot he doesn`t like respite.Its difficult as we need it.
I could tell the last respite home was poor and he was unhappy.This last one we are hoping will be better and he certainly seems happier.
Thank you Jes for your comments.I think a lot of these day centres are holding pens as you put it but of the ones we have been offered we feel comfortable about.One was relaxed but friendly and there was structure,the next was for more independent people but did a lot of activities,and he would only go there one day.The people seemed happy and could express themselves.
I know I want a small group home for our son when he is in his mid twenties.I really would like to see some light at the end of the tunnel.I don`t want to do too much work,I know that is selfish but thats why I don`t want dd or ilf,I want to make it as easy for myself as possible.

if you are thinking of a small group home for him in his mid twenties start looking ina couple of years time, it can take a long time to go through the process of finding the right home and sometimes the right home has no vacancies, then a home with a vacancy may not be able to take your son, the last time i was involved in filling a vacancy out of seven people put forward two decided it was not for them and five were deemed unsuitable ie too young to old, not appropriate care available etc and there is still a vacancy 14months later.
you are not selfish to want your son settled and there are some good homes out there.

not selfish at alll. We wouldn't expect to care for our children for 40 years. Its just making sure they are safe and happy.

Thanks very much to jes and riven.I was a bit nervous of putting that comment about being selfish but actually I am trying to make looking after him as easy as I can for myself short of him going into fulltime care.
That is definatly not to say I don`t give him as loving and as good a quality of life I am can give him,but as an example I don`t want dd or ilf for his care as its sounds like too much hard work for me!
Someone I know drives an 80 mile round trip a day so her dd with down syndrome can do the right catering course.However I am a full time working mum and just couldn`t do it.
It has to suit us and our lifestyle,so I am not that selfless,but I wouldn`t like my ds to be unhappy.