What will happen to me if Medicaid is cut?

[Seven77]

And to others who experience similar challenges? Only God knows.

 I have Duchenne muscular dystrophy and am 39, I require the use of a portable ventilator. Thanks be to God that I am doing well, I still have use of my hands and fingers which means I can use my trackpad to move the mouse, and I can speak just fine which means I can use voice dictation to type and I can converse. I can get outside and go places and do stuff. For 10 years, I have been getting 16 hours a day of skilled private duty nursing services for home health aid. I live at home with my elderly parents because it's the easiest solution. And there's no way I would survive any group home or institution. I like the independence that I do have, the amount of independence that is possible for someone in my condition. Anyway, the reason I'm sharing this is because the state recently cut 4 of the private duty nursing hours for no good reason. And now the federal government is considering cutting Medicaid.  All I know is, that means I could possibly lose more hours. I don't know what the perfect solution is for healthcare in this country but please pray that people like myself are spared from preventing from being valued members of society and that we can receive/continue to receive services that improve or maintain the quality of life.

[Anomaly]

Sorry to hear about your struggles. That is why we need intelligent conversations about healthcare.  You should be able to receive reasonable care that is appropriate to your circumstances and conditions.  Your situation is an example of inherent dangers of institutionalized care.   A bureaucracy is determining nurse hours a budget.  The system may not be considering, or us considering, home care cost vs a group facility.   But not everyone has parents or a private home option.  Maybe better group homes is what is needed.   If they had better group homes, would it be mandatory for you? Would you have the option to choose one or the other?  Or would an institution be mandatory for any care?

Those are the hard questions. In the U K, going outside the NHS is very difficult.   My aunt lives in an underserved area and saw a private Dr because she was in too much pain.  She was diagnosed with gall stones.   Despite that, to date, it's been five months going through the NHS system because they will not recognize or pay for any treatment , tests, or diagnosis done outside of the NHS.   PERIOD.  

We complain about our system, but they have issues too.  

Fixing the health care crisis should not be an us vs them fight.   Obamacare was jammed through and has been politically resented.  Obamacare has serious flaws.   Going to a Single Payer system solves nothing because it doesn't fix the systems problems, just throws  "other people's money" at it.   

We aren't Bangladesh where anything is an improvement.  We aren't so bad off that copying another's flawed system is necessarily an improvement.  Nor is the US system so great that some aspects should be changed. 

[Seven77]

1 hour ago, Anomaly said:

Sorry to hear about your struggles. That is why we need intelligent conversations about healthcare.  You should be able to receive reasonable care that is appropriate to your circumstances and conditions.  Your situation is an example of inherent dangers of institutionalized care.   A bureaucracy is determining nurse hours a budget.  The system may not be considering, or us considering, home care cost vs a group facility.   But not everyone has parents or a private home option.  Maybe better group homes is what is needed.   If they had better group homes, would it be mandatory for you? Would you have the option to choose one or the other?  Or would an institution be mandatory for any care?

Those are the hard questions. In the U K, going outside the NHS is very difficult.   My aunt lives in an underserved area and saw a private Dr because she was in too much pain.  She was diagnosed with gall stones.   Despite that, to date, it's been five months going through the NHS system because they will not recognize or pay for any treatment , tests, or diagnosis done outside of the NHS.   PERIOD.  

We complain about our system, but they have issues too.  

Fixing the health care crisis should not be an us vs them fight.   Obamacare was jammed through and has been politically resented.  Obamacare has serious flaws.   Going to a Single Payer system solves nothing because it doesn't fix the systems problems, just throws  "other people's money" at it.   

We aren't Bangladesh where anything is an improvement.  We aren't so bad off that copying another's flawed system is necessarily an improvement.  Nor is the US system so great that some aspects should be changed. 

4

4

I would hope that an institution or a group home would never be mandatory for someone in my situation.

Yeah, the system isn't considering what is necessary for different individuals who need private duty nursing. It's like what may be good for one person is good for everyone. I've actually been told from the entity that made the decision that I actually do require up to 24 hours care, but because of the way that the regulations could be interpreted, I can't receive that in where I want to live, at least not from a skilled nurse, because I have at least one parent who can do some of the work (nevermind age or health conditions.) I think the implication is I belong in an institution (where my life would end quicker and save the government costs in the long run). 

By the way, if people have noticed numbers at the end of quoted posts, the voice dictation software I'm using is doing that for some strange reason... 

Edited September 25, 2017 by Seven77

[Era Might]

I don't have anything to add on the policy question, but more generally, why do we save anyone's life? That's a real question. We all know we can't save everyone's life (because of limited resources, money, etc.), but why do we save anyone's life? And how do we choose who gets saved? Obviously, if you have unlimited financial means, you save yourself. The people who have unlimited financial means are few and far between, so that leaves most people. In America, the "most people" demographic is the middle class, and they are served through middle class institutions like health insurance (where you buy into something to get something out of it). Some middle class people live, some die. Health insurance is a risk for all. I think that's a fair, objective summary of the situation. Health insurance is an economic question, for the most part: how to distribute costs, risk, etc.

I'm wondering whether this model has to change, because the entire economic and technological foundation of society has changed. Employment, for example, is very different from what it was post-WWII when we began to build the "Great Society" with social programs, insurance, etc. That was a time of the Organization, people being fit into a social system. Today, it's all about innovation, disruption, technology, etc. People don't stay in jobs for 50 years...you're lucky if you have a job for a few years, and you have more and more people doing "odd" work like freelancing and ridesharing, which isn't a traditional "job." Manufacturing has moved overseas where labor is cheaper. This is a time of great growth for countries like China and India, they are modernizing before our eyes. But, as always, when you have growth, you also get rising expectations..that's why Americans don't hold themselves to the same standards as China and India, we expect to have a fully functioning system and not have to worry about basic problems like food and health.

The fact that health care is such a huge problem reflects real inequality in America. And, some might say, that's natural, this is an open opportunity system where you rise or fall on your own merits. But, if our society keeps widening, if some people have a good system and others don't, it's gonna be a huge problem, and already is. There is a lot that you can debate, just from a policy and economic perspective, but right now I don't think that's the real issue, politically. The issue is, fundamentally, what kind of society are we? Why do we save anyone?

You can go to cities in America where the wealth is just dripping over. Lamborghinis, fancy restaurants, yachts, mansions, whatever. And you can probably go to another part of the same city where people live in poverty, crime, etc. Why has wealth grown so extraordinarily in our time, but we don't see the same evolution in the social system? I'm all for having reasoned policy discussions, but there comes a point when that's not enough, something is out of wack in the country. I don't think America knows what it wants to be right now, because the world is changing and some people want to keep moving and some people want to go back. And probably most people just want to know what the hell is going on.

I think we all have to stop and ask a question: why is my life this way? We all have different lives, so we'll all be asking a different question, but to ask why is the first step toward a civic mindset. No, my life is not the way it is merely because of personal decisions, but because I'm part of political processes that are much bigger than me. And, of course, also because of how I have responded and lived in my environment. But once you start asking the question, why, and going outside yourself, outside your own "sins," then you begin to develop a political consciousness. That, I think, is what Trump and nationalism more broadly are out to destroy...they don't want people to develop a political consciousness out of their own condition, they want everyone to be an abstract "citizen" under a "rule of law" and all saluting the same symbols. The purpose of government is not to unite us all under fanatical, symbolic propaganda, but to help us formulate and live out our ideals. America is not an idea, just the inspiration for an idea we're all supposed to be groping for...that's what patriotism is, thinking, questioning and trying.

[Guest]

On ‎26‎/‎09‎/‎2017 at 4:16 AM, Seven77 said:

I don't know what the perfect solution is for healthcare in this country but please pray that people like myself are spared from preventing from being valued members of society and that we can receive/continue to receive services that improve or maintain the quality of life.

I am almost ashamed (illogical guilt) that I live in Australia with our generous social welfare programs including Medicare.  I really do hope, S77, that something positive will come up for you - for you and your parents too. 

I can't do anything practical and will keep those who can in prayer........and I will be keeping you and your intentions in prayer and America too as she struggles on many levels.  Where would the free world be without the USA?  We certainly have a huge debt of gratitude and thanksgiving.

_______________

PS How long Australia can continue to maintain our generous social welfare system is debatable and is even now under debate.

Edited September 28, 2017 by BarbaraTherese