Friday, August 14, 2009

The NIH Fails To Kill Someone

A rather distressingly large portion of the US electorate, including the editorial staff of Investor's Business Daily seems convinced that the British nationalized health care system kills people that it judges to be less than worthy. Not so.

On edit: the offending portion of the editorial has now been removed. It said that Stephen Hawking (famous British citizen with ALS) "wouldn't have a chance in the U.K., where the National Health Service would say the life of this brilliant man, because of his physical handicaps, is essentially worthless".

Andrew Davis, here, discusses the astonishing range of benefits provided for his profoundly disabled step-son.

My fiancee has a son from a previous relationship. He has lissencephaly: one of the proteins in his brain didn't fold right during his gestation, so the surface of his brain is mostly smooth. As I understand it, not being a neurologist, it's in the wrinkly bits (see my mastery of the technical terms!) of the surface of the brain that all the clever stuff happens. He's also epileptic, since apparently brain defects are like chocolate coated coffee beans, you can't have just one (I know this sounds tasteless, but faced with bad luck on this scale you've got to laugh or cry and there's only one sane choice there).

So, this little lad has no language ability, virtually no motor control, no social bladder and bowel control. Life expectancy at birth, based on worldwide statistics: two years. He's just had his sixth birthday, and is very pleased with his new drum. There is no way at all he's going to make any economic contribution to anything, if all we're going to do is count the beans. He's certainly not going to make breakthroughs in theoretical physics, he's not even terribly reliable on the concepts of 'up' and 'down' (although he's bang alongside the concept of icecream and mashed banana).

So, right, according to the opponents of sane healthcare in the US, our Horrid Meanie Socialist NHS is just going to let him die, right?

Except, oops, no, he's not dead. He's currently at three times his life expectancy at birth.

His mum, my fiancee, gets:

1. Free prescriptions for him for life.

2. Quarterly appointments with a neuro specialist for his epilepsy (who seem to have finally dialled in on the right combination of meds for him, he's been fit free for a couple of months now, and a lot less sedated than he was on the last combination.

3. Free wheelchair. A pretty spiffy, brand new paediatric wheelchair. Downside here is because it's NHS property I'm not allowed to mod it for the little lad, otherwise his mum'd be pushing him around in the kind of wheelchair Bond would get off Q.

4. Free epilepsy helmet (my suggested addition of viking horns for it has been vetoed by my fiancee.)

5. Free splint to correct the tendon problem in one of his fingers that resulted from his lack of motor control, one of his fingers is twisted out of shape and he wears a splint at night.

6. Monthly deliveries of free nappies for him (which started after some defined age before which a parent is expected to pay for their child's own nappies).

7. Free spectacles (I'd love to know how the optician figured out the prescription)

Ok, so that's the healthcare.

Now, the personal care and living assistance. This doesn't come out of the NHS budget, it comes out of the local government social care budget.

Under this head (and forgive me if I don't include everything here, this is just the main points):

1. Her home adapted for disabled care. Hoists installed in littlun's bedroom and in the living room, a wheelchair lift between the diningroom and his bedroom, a ramp up to the back door, the backyard paved with a wheelchair friendly surface, the bathroom completely fitted out with disabled modifications. The bathroom includes a shower chair for him.

3. A motorised bed, a kiddie sized hospital bed basically, which raises and lowers for sleeping and dressing purposes for him. It also includes a set of blocks and bumpers that keep him in a good sleeping position, because he never walks unaided he tends to get twisted up in his sleep so there was a risk of spine damage.

4. All the doors widened in the house for wheelchair access.

5. A special school for kids with special needs (the local one is very good, their annual prizegiving day is a hoot, everyone gets a prize and you'd have to have a heart of stone not to get the warm fuzzies off watching the Downs kids punching the air and whooping it up off getting their prizes. My stepson-to-be got a prize for 'purposeful grasping', if we ever get an institution of secular sainthood I'll be bribing the personnel department at that school for a nominations list).

6. A wheelchair adapted car for which she has to pay the petrol and a nominal contribution to the insurance. (I think this one is under a separate scheme than the local authority).

7. She gets paid income support, unemployment benefit, housing benefit and carers' allowance. She also gets let off some local taxes. She has to budget a little, but she, her son and the dog are all healthy and well fed and she has a little extra to contribute to the band she's in. She sings and plays bass and sax.

8. She'll soon be getting funding for a couple of nights a week respite care, essentially state funded babysitting so she can have a bit more of a life than she does at the moment. Littlun goes to stay with his granny and grandpa at the weekends but they're getting on a bit.

Basically, Hawking doesn't need the charitable foundation care, it's there for what I suspect will be little extras. My fiancee gets things like that from various charities for the little extras: the little lad has a trike he can ride around on (it's steered by the bar at the back you use to push it, he can't pedal but his legs get exercised as they go round and it gets him out in the fresh air where little old ladies can coo and make a fuss over him), a vibrating massage mat to help his muscle tone and a small selection of toys.

Things that come out of our own pockets: the rest of his toys, the adaptation so he can play flash games written for disabled kids (it's a big red button he can whack on), the disabled adaptation of his other toys (I do these, a few cheap parts and some solder installs a socket to plug in a big button for him.) and the IR camera and timelapse recorder I set up so she could monitor his night time seizures (most of that system got built out of odds and ends from mine and my techie friends spares boxes).

Yeah, socialised medicine lets useless mouths* die. Really. You have to be rich and famous to get proper care. Right.

*The fact that these rightard vermin think there's any such bloody thing as a useless mouth tells me all I damned well need to know about them. Upon my oath I am not a violent man, but anyone willing to tell me to my face that that little lad is useless had better have a good dentist on speed dial.

Can you imagine such a level of care in the US? Neither can I. You can get Social Security if you're totally disabled. Totally. Disabled. The definition is unable to earn $980.00/month doing anything. It's pretty much impossible to reach.

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