Oh FFS I am shaking... has there been a thread yet about Minette Marin's unbelievable column on babies with Down's syndrome?

[emkana]

words fail me

my son will never be independent etc butthese arguements about quality of life still annoy me.

It is a bit like the attitude that wants bullied children removed from classes rather than deal with the bullies.

If an adults life sucks because of the attitude of society then society should be ashamed of itself and shift - rather than question whether the people affected should even exist

Jimjams - you're right of course about provision. Children and adults with SN ought to have what they need.
However women pregnant today have to make their choices in the harsh light of reality, knowing that resources are thin and have to be arduously fought for.
Not everyone can do that. Maybe they don't have any support, maybe they're not articulate or educated, maybe they already feel stretched to the limit.
That's why I feel incapable of judging another woman's decision.

I agree pagwatch, with your bullies analogy. Of course we aim to sort out the bullies, rather than get rid of the bullied. But IMO it is inaccurate to make this comparison to the subject matter here. I am not questioning the attitude of society here, but the financial resources of our society to provide the kind of highly supported, rich life that an adult with a severe learning disability needs and deserves. The attitude of my family, our friends, most people we know, is absolutely to support people like my sister to have a fulfilling life. But, as Litchick suggests, no amount of education, dedication, campaigning, and pure hard work on carers' (including my parents) part can guarantee that this provision will be there. It costs a lot of money.

My sister's childhood was wonderful, and enriched all our lives. If I were expecting a baby with Down syndrome, and knew that a society was in place which would enable all this love and joy and positivity to flourish well into my child's adulthood, I wouldn't think twice about proceeding with the pregnancy. But the gritty reality is that such an adulthood is an expensive rarity, and this is going to factor in how parents feel about welcoming a child with Down syndrome into the world. We give birth to babies, and nurture our children, but they will be adults for most of their lives, and the realistically anticipated quality of that adult life needs to be considered, too.

how about the goverment alocate more money, instead of tax cuts.
so now the excuse for aborting disabeld babies is money!!

I think if we can find the money to bomb the crap out of Iraq we should be able to resource a reasonable standard of care for adults who need it. Especially as in doing so we could be proving jobs and skills to those providing that care

you cant decide to abort a baby on whether they would be happy as an adult! How many adults without disabilities are 'happy'? ND adults are on anti-depressants, being bullied, made redundant etc etc etc.
Its even worse for elderly people but we don't abort because one day my child will be elderly and left alone on a hospital trolley with no support. We try and get it changed.

Sometimes people in a society don't ask the right question.

Here it is..

Why, precisely, would it cost £100k-£200k a year to look after one person?

If they paid for full time round the clock care in someone's home, it couldn't cost more than £50-60k in wages and basic equipment at cost price. Unless they give each person their own two bedroom house, I'm struggling to come up with a figure even remotely like that.

Where do they get the headline figure of £200k from? Who's making that kind of profit from it?

I'm reminded of the contracts in the NHS in which computers that are available for £300 elsewhere 'cost' them £1000, and stretcher trolleys that have a cost price of £50 "cost" them anything up to £20,000 each, and are so badly designed that they're almost unworkable and won't fit in the ambulances without a struggle. Someone makes nice money out of it. Not usually the care staff.

Meantime, some government bean-counter taps figures into his calculator and works out 'how costly these disabled people are' and these figures advise government policy on abortion accordingly. Hmm.

dd's residential care would be about 2k a week. When she lives independantly she will have 4 PA's on a rota for night and day help plus benefits, wheelchairs, adaptations etc
Sop yeah, I can see 100-200K a year.
But thats irrelevant surely. There's no monetary value to a life.
But then dd is quadraplegic.

amber:
say someone needs 24hr qualified care
once you take into a/c night pay and agency fees you can end up paying £25/hr at least for this.
25 x 24 x 365 is 219,000 for one member of staff. THEN there is bank hol pay which can be nearly double, plus many people who do home care also charge milage

Now if Marin had written SlipAStable's article and shouted about the lack of provision, I would have had some respect for her. It's the facile tone of her writing that got me. SlipAStable's post was anything but facile.

I still agree with NCM though that it is very difficult to predict who is going to get depressed or have a poor quality of life. I've had several friends who've had severe mental health problems, including one who made several attempts before finally killing himself. But you couldn't have predicted this beforehand, and even if you had, I don't know if it would have been enough to wish he had never been born: he did have many happy years before he got to that state.

How many years of happy life should be weighed against how many years of misery? Hard one.

200,000 isnt unheard of for a care package. It isnt even that unusual. As has been said, it is the cost of providing staff for 24 hours a day 7 days a year.
Also there will be some people who require a higher staff ratio. 2 staff to 1 client for example. I have heard of people on a 5 to 1 ratio (not many, but some)
As I understand it when people talk about the cost of a placement they are talking about the cost of the residential part, and staffing. It doesnt included any NHS costs.

dd's respite is about £150 a night.
when people win cases against NHS for negilence, the care part is the most expensive, which is why the pay outs (4million is a plucked out of the air average) are so "high"

The curious thing is that if you look on the jobs sites, the care workers - even the ones doing nights who are qualified nursing staff - are getting between £15,000 and £25,000 a year, not £219,000. Even if it takes three of them to do the job, all paid that wage, it's not £219,000. Someone's making a nice profit out of it, and it's not the families or the individuals or the care workers. It annoys me.

I dunno. Things could always be better. But we seem to forget that for the majority of anblebodied people around the world life is shite and human rights are a pipe dream and life for disabled people is unimaginably hard.

I'm not proposing an either or argument here. Just that some understadning of the resaourses available and their management AND a perspective of how much better all of us have it here just might dampen some of the unrelenting negativity and cynicism here.

"The curious thing is that if you look on the jobs sites, the care workers - even the ones doing nights who are qualified nursing staff - are getting between £15,000 and £25,000 a year, not £219,000. Even if it takes three of them to do the job, all paid that wage, it's not £219,000. Someone's making a nice profit out of it, and it's not the families or the individuals or the care workers. It annoys me."

those salaries are based on 37.5 hrs work a week. there are 168 hours in a week.
So it takes 4 and a half members of staff to cover 24/7 and thats only if just one is required. Thats over 100K on the part thats getting to the carers, not 25k outta 219

but yes the agencies do make a nice profit, but if SS and the NHS were more efficient and better employers there wouldn't be a need for them so who can blame em really? Agency staff also get paid more than NHS staff.

I have skipped through the thread, and read the article, and words fail me, she is ignorant, and a mouth full of other words I will not use. But I would like to add something, my aunt is 57 yrs old, and she has downs, she is happy, healthy, very independent. She lives with an adoptive family as my grandmother couldnt cope as she got older, and my aunt grew into a young woman.

She lives a wonderful life, has friends and family that love her, she has not suffered at all because of her disability, in fact sometimes we wonder if she has it better than the rest of us.

So two fingers to the ignoramus who thinks a childs life that is filled with love and laughter will turn into a wasted unhappy adults life, every person deserves to make their own way, whether it lives up to anothers ideals is of no consequence. Disability or not, live and let live.

To be fair she never said that. There is a middle ground here, as usual, that people just seem to not want to see. Fair enough.

But just an aside, careworkers jobs and day cnetres are closing all over the country where Direct Payments is beinbg implememted, where care users are given the money to spend where they want to, rather than it going straight to day centres, etc.