4 ms·

> meaningful quality of life factors. What are these?

by gowld 6y ago

andrepd 6y ago
Everything, from cognitive ability, to chronic health problems in vision, hearing, heart, diabetes, etc. And of course, the immense weight on caretakers.
tristor 6y ago
It depends entirely on the person what sort of effects Downs Syndrome will have on their life. Some people born with Downs Syndrome have fairly mild intellectual disability and so are capable of basic life independence and holding down menial jobs, however many people will have moderate to severe intellectual disability and be completely incapable of living independently at any point in their life. I think many people don't understand the depth of that statement, "living independently" isn't just a matter of financial independence. Certainly there is a place where society could help to fund the living expenses of the severely disabled. What I mean is that many people with Downs Syndrome are unable to perform basic tasks of life without assistance, such as maintaining their living space, cooking for themselves, being able to get to a doctor's appointment on time, being able to pay bills. Note, I don't mean forgetting to pay bills, which can be resolved through assistive technology, I mean being unable to follow the process to actually make a payment. The life expectancy of people with Downs Syndrome has become quite good, and is around 60 years of age now, and yet for many of these people they will never know a moment of true independence and agency in their entire lives. They will need a permanent, likely live-in, caretaker from birth until death, long after their parents have passed away. One unfortunate reality is a prenatal test can't tell you how severe the disorder might be. Your child-to-be could end up being one of the kids with Downs Syndrome who effectively has some physical abnormalities which can be accommodated and is a little slower at learning, but could otherwise graduate college and live a normal life. Or they could end up being one of the many children with Downs Syndrome that suffers from a deeper intellectual disability. IQ is one of those things that's mostly meaningless, but on the extremes it matters. The average IQ for adults with Downs Syndrome is 50, meaning that for most people with this disorder they will never get beyond the intellectual capacities of a small child. Some, unfortunately, are mostly non-verbal and unable to carry on conversation. I don't think I should be any more specific than that, because it wouldn't be fair to the privacy of the people I've volunteered with. If you're legitimately curious, I'd encourage you to just search online. There's a lot of information about Downs Syndrome care out there.
LatteLazy 6y ago
That's the million dollar question here: is the Downs person's life worth more than the person (or people) they replace?
- kwhitefoot 6y ago
  Not really. At the point when the decision should be made there is no Down's person only a potential person. Here in Norway genetic counselling is offered if the mother to be is above a certain age (sorry can't remember the number). So my wife and I had sessions with a genetic counsellor who explained the statistics related to birth defects. The decision is of course entirely up to the mother to be, and her partner, the counsellor in my experience is very careful not to sensationalise anything and was very neutral. The counselling and tests are provided early enough that an abortion can be provided at low risk to the mother and before the foetus is viable.

> meaningful quality of life factors. What are these?

by gowld 6y ago

> meaningful quality of life factors. What are these?

Everything, from cognitive ability, to chronic health problems in vision, hearing, heart, diabetes, etc. And of course, the immense weight on caretakers.

tristor 6y ago

It depends entirely on the person what sort of effects Downs Syndrome will have on their life. Some people born with Downs Syndrome have fairly mild intellectual disability and so are capable of basic life independence and holding down menial jobs, however many people will have moderate to severe intellectual disability and be completely incapable of living independently at any point in their life. I think many people don't understand the depth of that statement, "living independently" isn't just a matter of financial independence. Certainly there is a place where society could help to fund the living expenses of the severely disabled. What I mean is that many people with Downs Syndrome are unable to perform basic tasks of life without assistance, such as maintaining their living space, cooking for themselves, being able to get to a doctor's appointment on time, being able to pay bills. Note, I don't mean forgetting to pay bills, which can be resolved through assistive technology, I mean being unable to follow the process to actually make a payment. The life expectancy of people with Downs Syndrome has become quite good, and is around 60 years of age now, and yet for many of these people they will never know a moment of true independence and agency in their entire lives. They will need a permanent, likely live-in, caretaker from birth until death, long after their parents have passed away. One unfortunate reality is a prenatal test can't tell you how severe the disorder might be. Your child-to-be could end up being one of the kids with Downs Syndrome who effectively has some physical abnormalities which can be accommodated and is a little slower at learning, but could otherwise graduate college and live a normal life. Or they could end up being one of the many children with Downs Syndrome that suffers from a deeper intellectual disability. IQ is one of those things that's mostly meaningless, but on the extremes it matters. The average IQ for adults with Downs Syndrome is 50, meaning that for most people with this disorder they will never get beyond the intellectual capacities of a small child. Some, unfortunately, are mostly non-verbal and unable to carry on conversation. I don't think I should be any more specific than that, because it wouldn't be fair to the privacy of the people I've volunteered with. If you're legitimately curious, I'd encourage you to just search online. There's a lot of information about Downs Syndrome care out there.

LatteLazy 6y ago

That's the million dollar question here: is the Downs person's life worth more than the person (or people) they replace?

kwhitefoot 6y ago
Not really. At the point when the decision should be made there is no Down's person only a potential person. Here in Norway genetic counselling is offered if the mother to be is above a certain age (sorry can't remember the number). So my wife and I had sessions with a genetic counsellor who explained the statistics related to birth defects. The decision is of course entirely up to the mother to be, and her partner, the counsellor in my experience is very careful not to sensationalise anything and was very neutral. The counselling and tests are provided early enough that an abortion can be provided at low risk to the mother and before the foetus is viable.