For anbody interested, more thoughts by Julia Hollander

[emkana]

www.motherstory.co.uk/2008/03/

The point is that unless the services are there, any notional legal rights are meaningless.

It's like saying OAPs have the legal right to free bus travel, but if an OAP waits for three hours for a bus that never comes then any "legal right" is worthless.

Regarding JH's eligibility to legal aid, I think it is possible to apply for legal aid in your child's name. Any anyone advise on this?

yes you get legal aid in the childs name. we have it for dd.

It depends. A lot of social services provision they assess as "respite" ie for you, not personal care for your LO. Hence you will not get legal aid for any social services lack of support unless they word their initial assessment very carelessly. Or so I have been advised by specialist lawyers.

Educational stuff is obviously for the child so automatically attracts legal aid. Unless it's tribunal because that is supposed to be a cheap process

a med neg claim would be in the child's name so would also be legally aided.

Fio - I think it says that it's disabled children in general that are three times more likely to be abused than other children. Grim, as that means that there's an element of intra-family abuse going on. In fact grim whichever way you look at it

Has anybody read JH's latest comment on her blog? It's this:

"I don?t know whether you have read the book, but I suspect not and beg you to inform yourself by doing so. You are mistaken when you say I didn?t even try to parent Immie, and even more mistaken to assume that putting her into care was ?because she is disabled?. There are many specific aspects of Immie?s incapacity; they, and the complex circumstances in which they were revealed to me, are detailed in the book. Perhaps most important to state here is that she needs 24/7 nursing care for the 20 or so years she is expected to live; I desperately sought help to provide this for her; no help was forthcoming. I cared very much about my baby; I wanted the best for her. My breakdown and the rest of my family?s total inability to cope were letting her down, so I took the only safe course of action available to me at the time. This website and many other ongoing activities of mine might suggest to you that, far from abandoning my daughter and stepping away from her world, I am doing my utmost to get voices like yours heard."

I can't help myself, I have ordered her book from my local library now. Just to see if that really gives the answers.

I refuse to line this woman's pockets for any reason at all.

Rushing as my hands are full.But sorry I was at a bit of a low ebb last night.We have just been allocated 40 nights respite a year.We got the first night last night and it was bliss,despite my anxiety.It helps when people say its a necessity.I feel totally different today.Despite the awful stresses and pressures,my son has enriched my life enormously,and brings me more joy than I could describe.Yes its hard when you know that your child could die away from home,but I make sure they have the full information and there is also waking night stafff.The longest he was in a fit was 5 hours.That was when he was 6,and he survived,after been transferred to two hospitals.You just have to live with the thought,I wouldn`t stop respite because of it,that might lead to more problems.Thank you for the hugs,much appreciated.

By the way I dont agree with Julia in her comment.Twenty years?We were told our son has a normal life expectancy.Julia you would have been a brilliant mum to Immie,you obviously do care.I am sorry for you but please stop been so strident.Cant you say it felt the right decision at the time but with hindsight you wished you could have got more help?You are Immies mum,no one else is.Please,you talk as if you are separate from the rest of us.Suppose Tania cant look after her any more.Would you take her home?I do care about your feelings because I was there too,twenty years ago.And I tell you I am so glad there wasn`t a helpful social worker to take away my child,at 5 months old.You needed love and support,and I am sorry.

'Buy my book if you want the full story.'

Does she employ Kerry Katona's agent?

'Buy my book if you want the full story.'

Does she employ Kerry Katona's agent?

Whose Nataie? Yo Natalie Yo Natalie. great post by her

who's

all julia's posts seem to contain the sentence "read the book." . I refuse to read the book but am sure it doesn't contain anything earth shatter or opinion-chaging. Do hope that someone who has read it passes comment on her blog.

'Line my pockets even more whilst the state pays for every bit of my daughter's care even though I could well afford to help.'

Just to give mums of children something positive.We are just looking at daycentres now.You have to fight for it true,but at least they are open during the holidays.Another thing is that because our son is nearly 20 the attutude of the sw is so different,more business like .Unlike when he was a child and they made you feel so guilty for asking for respite.I didnt like the attitude,but it is much better now he is grown up.Also, the staff in all the day centres have all been brilliant,uttertly supportive and try to help re: flexibility.Another thing is if they cant help,there is direct payments or ILF if you child is entitled to that.(say you dont finish work till 5)But the awful attitude of prejudice in day nurseries and after school club is missing,its so refreshing and you feel people are talking the same language.I hope that encourages you a bit.I would like to say here that the disgusting and thoughtless comments from parents of nt children ( who i thought were resentful because they could see i was enjoying my disabled baby and in my opinion that diminished their smug feelings )who said ITS JUST GOING TO GET WORSE AS HE GETS OLDER.Well SORRY,IT DIDNT.
I love his uniqueness,his madness,his unpredicatbility,dressing him up in cool clothes.It got better in fact as my love for him deepens.Yes folks,disabled babies are like fine wines,they get much much better the older they get.Sorry Julia,you missed out!!

what a lovely post time4me - gives me a lot of hope about new attitudes, and also can just see my DS in cool clothes!

time4me that is one of the best posts I have ever read. amd thankyou for giving me hope for adult life.

Thanks very much ancient and 2shoes,that was lovely to read.I have found the last few years much easier ( maybe it took me that long to come to terms with everything!) but it has been like stepping into the light when we have looked at daycentres and respite.I think most of you must be entititled to direct payments as a right.Also your child gets incapacity benefit once they are 16 and that helps a lot.At the day centres we looked at,they do lads weekends and pamper weekends.The rooms were great,like a Hotel room,dvd,tv etc.Beautiful bedding and furnishing,good enough for a Mal Maison Hotel.I was asked to choose his bedroom,that was a nice touch.He went for one night and they werent sure whether he got a lunch the next day or not.A packed lunch was very lovingly put together for him.Dont forget these places get spot check inspections so where ever you are they will be inspected.Its not been half as bad as I thought,no way near.But just think,he can go to the day centre throughout the hols,wow!They are only closed for bank holidays.Another positive thing is that you felt you were firmly the customer,unlike the Day nurseries,and mainstream schools ( altho we didnt look at mainstream schools as a choice as a child).We were treated with courtesy and respect,and told we could drop in,visit at any time.We really felt they wanted our son,which was such a difference from when he was small.Again the best bit for me has been the lack of Well why do you need respite? Just the totally different attitude all the way across,has been so brilliant and very empowering and affirming.Bear in mind my son has massive behaviour problems,is doubly incontinent,has severe fits and no self help skills,still it was great to feel so wanted.I have missed a very important point here,which I should have stated earlier.I did tell my sw that 20 years ago I hawked my ds round daynurseries and childminders,after school clubs etc and did not want to have to explain/beg/apologise for his severe disabilites,such as ask if they have adequate changing facilities.So the sw took this on board and the ground was prepared.So this might be worth saying to your sw,as you shouldnt have to go through that again.We were shown changing facilities each time and given a lot of reassurance.No by the way...from me,this did help although I think it could be improved further ( by a book like All about me`-just an idea.) I will follow this up.

I'm really pleased everything has worked out for you time4me.

Thanks Yurt,I love reading your posts x

aww thank you

time4me I have smiled reading your post. so nice to read that things are going well.
I have to say we are very lucky with dd's respite. it is at her school and the people are wonderful.
If I have to say one bad thing though it is that as they have 2 weekley borders they seem to take priority. but I suppose that is understandable as dd is only there one night at a time. but it does annoy me sometimes when they can't all go on an outing. BUT dd doesn't mind as she would rather come home early.
she has settled in there well though and it gives her a bit of time out from us.

time4me, I've enjoyed reading your posts It's heartening to hear what day care can be like, as for me worrying about dd's future is the thing I find hardest about her disability. Knowing that there are good care centres out there does help to ease that worry. I'm glad that you and your ds are in good hands.