Man, I wish the hundreds of thousands of dollars of care we got positioned my kids into the workforce. Our reality is that all that while the care did help and make their lives much better - it won’t translate into productivity or self sufficiency. 🙁 I am super worried that will practically mean a universal healthcare system in the US limits disability care because it isn’t deemed as having a good enough ROI.
My kids are real life examples demonstrating that huge investment, while good for the individuals, does not reduce the cost or burden of them to society later in their life. And that very concept could risk society’s willingness to pay for any disabled person’s full care under universal healthcare.
No, it is from unfortunate personal experience. Special needs families get the short end of the stick in a lot of ways - ours included. Feel free to IM me about it if you want specific anecdotes. After killing myself to get my kids what they need (navigating insurance denials, waiting lists for specialists, underfunded and confusing government programs, lack of childcare, hitting out of pocket maximums year after year, and taking jobs that leave me exhausted and with little family time to pay for it all), I have a huge defense mechanism for anything that sounds like it can quickly and easily solve this kind of situation - because I’ve been repeatedly shown it is a pipe dream. It doesn’t mean UHC isn’t a noble cause or the right way to go. But the reality is that it probably won’t be much of a qualitative change for families like ours. And it is hard to hear that our experiences and fears are not valid.
My kids don’t have full language capabilities, they struggle with fixations (which means learning has to be customized to their fixations or it won’t happen), and they don’t have enough situational awareness to be safe.
So, therapies are helpful in getting them enough language to have basic needs met (and minimize behavior issues), practicing doing things they don’t prefer for short bursts and learning things like how to behave in a parking lot. We may never get to productivity or self sufficiency - we are focused on staying alive.
Man, I wish the hundreds of thousands of dollars of care we got positioned my kids into the workforce. Our reality is that all that while the care did help and make their lives much better - it won’t translate into productivity or self sufficiency. 🙁 I am super worried that will practically mean a universal healthcare system in the US limits disability care because it isn’t deemed as having a good enough ROI.
Thats irrelevant. Your children will still receive care no matter what.
My kids are real life examples demonstrating that huge investment, while good for the individuals, does not reduce the cost or burden of them to society later in their life. And that very concept could risk society’s willingness to pay for any disabled person’s full care under universal healthcare.
You are making lots of false assumptions and I will assume it’s intentional.
No, it is from unfortunate personal experience. Special needs families get the short end of the stick in a lot of ways - ours included. Feel free to IM me about it if you want specific anecdotes. After killing myself to get my kids what they need (navigating insurance denials, waiting lists for specialists, underfunded and confusing government programs, lack of childcare, hitting out of pocket maximums year after year, and taking jobs that leave me exhausted and with little family time to pay for it all), I have a huge defense mechanism for anything that sounds like it can quickly and easily solve this kind of situation - because I’ve been repeatedly shown it is a pipe dream. It doesn’t mean UHC isn’t a noble cause or the right way to go. But the reality is that it probably won’t be much of a qualitative change for families like ours. And it is hard to hear that our experiences and fears are not valid.
As an autistic person my primary struggles are productivity and self sufficiency. What factors in their life got better if not those things?
My kids don’t have full language capabilities, they struggle with fixations (which means learning has to be customized to their fixations or it won’t happen), and they don’t have enough situational awareness to be safe.
So, therapies are helpful in getting them enough language to have basic needs met (and minimize behavior issues), practicing doing things they don’t prefer for short bursts and learning things like how to behave in a parking lot. We may never get to productivity or self sufficiency - we are focused on staying alive.