to think that nothing changes overnight when you are 18 so why do SS

(27 Posts)
threesocksmorgan Thu 04-Oct-12 16:41:21

think sn does?
my dd is severely disabled, she will be 18 soon.
seems that we might loose respite....
we have got a workable respit package that offers us the support we need,
yet when she turns 18 she will move to adult SS and they might cut her package.
yet she will still have the same needs.
I just don't get why and severely disabled adult gets less support, when the reality they will need more than a child in lots of cases.

bigbluebus Fri 05-Oct-12 11:39:24

Transition is a difficult time and my main criticism of the system so far is that although we started a Transition plan when DD was 14, the referral was only done to Adult Social Care at 17. Nothing then happened until 2 months ago, and DD will be 18 in just over 2 weeks.

We have got as far as knowing that we will get a package - hopefully on a par with what we get from children's services - possibly more. But the fact remains that we still don't know who will be providing the care and once they have been identified, they will need training. It is not going to happen in 2 weeks!!!

There is also the overlap with some services. DD goes to a SN school and will stay there until post 19. Because of this, the Community Paediatrician will still see her - even though responsibility for her health care passes back to the GP. She will still be seen by Paed Physio, Paed S& L and any other PAed services which are linked in to school. She will not, however, be able to go on the children's ward if admitted to hospital - so will go on appropriate adult ward for whatever medical condition she is admitted with and be seen by corresponding consultant - who won't know her.

I am currently very worried about the immediate future as we will be dealing with lots of new people who don't know DD - as she is very frail and vulnerable.

The next time that most adults come back onto the radar is in the prison service or when they have children and the child is subject to intervention.

It would be cheaper to fund Adult services properly, but no government has been willing to do it.

Peachy Fri 05-Oct-12 11:08:41

We get nothing at all- 32 SN kids, DH threatening to elave regual;rly as a result of the noise mess adn sleeplessness: qualify for sod all.

It's a system that has already broken IMO

we haven't even got a workable child package, the whole system is horrendous and corrupt, never mind adulthood, post 16, it's a nightmare as it is, though I will need someone somewhere to turn to for help and advice so I know where I'm being shafted.

dottyspotty2 Fri 05-Oct-12 08:15:21

Probably as they only have to provide for them for 16/18 years long term care package costs money, we had the opposite nothing under childrens team but more under the adults its wrong on all counts my DS isn't severe his is complex needs including autism his IQ being under 70 [67] meant he came under adult LD team if he'd been over we would of got nothing again.

ErikNorseman Thu 04-Oct-12 21:21:32

Woozly - no, 16 year olds don't get turfed out of care anymore, not since the leaving care act 2000.

threesocksmorgan Thu 04-Oct-12 21:18:44

isn't it odd that there is more for children than adults, do they think people suddenly get cured?
it is like charities. loads for kids, but god help disabled adults.

TheAngelshavetheOod Thu 04-Oct-12 19:22:11

We have a transitions worker here that eases the transfers but adults budget isn't big enough for the job neither is children's but they have more in comparison

Acumens100 Thu 04-Oct-12 18:17:38

Yeah, it's crazy, isn't it? It's getting better, but it's still rotten. When I went to my special school (in the distant 90s)-- I was 16 in the half term and bam, the funding ended. I showed up like normal and they said, oh, you don't go here any more. I wasn't even allowed to go home on the school bus, they just turned me out into the street. And that was the end of my education, hahah. BYE! DON'T LET THE DOOR HIT YA. The key worker and the nurse etc put me straight on the incapacity and I never saw any of them ever again.

I read an interesting article about transition--to NHS CHC using a Personal Health Budget. You can get them even if you're not in a PHB pilot area. One sec, will look...

www.personalhealthbudgets.dh.gov.uk/Topics/latest/Resource/?cid=7942

threesocksmorgan Thu 04-Oct-12 17:44:11

mn hq have been promising for months that there will be a topic for 16/19 plus transition but tbh I am not holding my breath. I don't post in the sn topic, so have started a support thread.....

here
I do hope there are others who will post and we can support each other.

badtime Thu 04-Oct-12 17:39:59

You may want to contact a solicitor who specialises in 'Community Care' law.

Local authorities are cutting everything they can, and often need a kick in the arse to even meet the service-users' assessed needs.

I am not sure about eligibility for Legal Aid, but an 18 year old may be able to get it.

Peachy Thu 04-Oct-12 17:39:01

yes Medusa, I have 3 with ASD and all an IQ that is around average- at least one ahs zero chance of independence because he spends a LOT of life in a trance or simply disconnecting, but there isn't a service to support him right now- cardboard box? Once I die it will be that: I can hardly send him to be cared for by a less-but-still-significantly-autistic sibling!

SSD discussing a dept for ASD, but I would lay money they backtrack due to cash. ATM they are telling people here that they do not work with people whose main carer is not terminally ill or abusive. If they think I will be able to cope with 3 autistic adults, at least one of whom is violent, in my old age they will have another think coming! It's hard enough now- have some lovely bruises again today.

Medusa that is really worrying. Is there anyone in your area that works with vulnerable adults? Sometimes the PD or MH teams will, sometimes the LD teams will. I have to say, sorry, that I have seen people referred to one after the other because funding is so short that no one wants to take another referral. Annoyingly, it is often the parents who are 'coping' and work hard for their DC that lose out because the DC's vulnerabilities are masked by the parents' good support. Do try to keep your DS on the radar if you can find the team that 'should' take him. At the least that means that there will be some knowledge of him of anything happens to you sad

threesocksmorgan Thu 04-Oct-12 17:32:20

Fishwife1949 the crazy thing is that she can stay at the same respite place until she leaves "school" at 19, so the place in there, the staff are there, it is all down to money.
we are lucky as we have a transitions SW, a children's SW all working with us. but at the end of the day we could still lose out.
it is hard enough when your child is small, but a grown person who you have to do everything for......well you need help.

OldGreyWiffleTest how the hell do you cope?

That's what scares me MrsTerryPratchett.. I have a rising 16 yr old DS2 (ASD and moderate learning diffs) who may just edge over the IQ 70 criteria.. and yet most definitely needs supportsad He is not and will not, be independent yet he isn't 'severe enough' by their cut off to get helpsad

This is why every area should have a Vulnerable Adults Team. A Team whose job it is to work with people who don't tick the right boxes. I know that there were a lot of people I worked with who were vulnerable and didn't fit our criteria (<70 IQ). When the money gets squeezed, though, LD teams can't work with anyone they aren't funded for.

TheLightPassenger Thu 04-Oct-12 17:21:10

yanbu. MrsTP - but what about those whose young adults wouldn't qualify for help under the LD team? I imagine there are young adults with AS/HFA/mental health issues or PD who might slip the net?

Adult LD teams can be great. Mine was when I worked there. You may well have a good one or one with some money and get decent services.

OutragedAtThePriceOfFreddos Thu 04-Oct-12 17:13:12

I can understand that they transfer care to a different team when people hit 18, but a persons needs are a persons needs and that's that. They should be aiming to meet a persons needs whatever age they are.

Peachy Thu 04-Oct-12 17:09:05

I think it should all be one smooth flowing agency

Maybe child services and LEA and the PAM professions would be more likely to go for early input if they saw the benefits longer term, as opposed to just the costs- it would be win-win.

DS1 gets HR DLA due to a need for constant supervision; when he turns 16 and goes to PIP, there is no clause to cover this need- am I supposed to suddenly let him pop out and injure me, my other children, random people he meets?

Silly system.

OldGreyWiffleTest Thu 04-Oct-12 16:48:56

When my son was discharged from the Child Paed aged 17 we were supposed to move to Adult Services. My son is now 28........and we've never ever been contacted by them.

Fight fight fight for what you need for your daughter OP.

Fishwife1949 Thu 04-Oct-12 16:48:10

Can i just say i feel your pain but as a former respite carer

Its sooooo hard for the la to get the people for small disabled children let alone adults

I hope i not dampeing your mood but just want you to understand

threesocksmorgan Thu 04-Oct-12 16:45:04

less that is the crazy thing, yes there is a chance we might keep what we have, but I think it is mad that there is so much support when they are children.
but suddenly overnight it changes and the parent is expected to do more.

catwomanlikesmeatballs Thu 04-Oct-12 16:44:57

That's horrible, how unfair, hope it works out for you.

grovel Thu 04-Oct-12 16:43:31

Might you not get more, not less, support?

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