Undercooked Blog Posts on Disability and Health Insurance: Part 4

Blue Caduceus symbol representing the medical profession

I keep wanting to write some kind of definitive take on disability and health insurance. Unfortunately, the speed and sheer absurdity of the Trump Administration and Republican Congress' American Health Care Act forces me to slap together more of series of thoughts, and hope they do some good. At the very least, it will do me some good to try.

I decided to hold off on the final post until after the House vote on the AHCA was resolved one way or another, or, you know, ANOTHER.

Part 1: 5 Basic Points - March 18, 2017

Part 2: A Tortured Analogy - March 19, 2017

Part 3: Questions for Lawmakers - March 20, 2017

Post Four: A Positive Message, or What Do We Actually Want?

So, now that the American Health Care Act has been withdrawn ... this version of it anyway ... what kind of health insurance system would actually be good for disabled people? Put another way, if Hillary Clinton were President and there were slight Democratic majorities in Congress, what would the disability community be fighting for in health care?

I don't think we as a movement should spend too much time trying to decide which grand health care scheme we should endorse. Instead, let's focus on what disabled people, specifically, need from ANY health care system.

I would like to suggest three possible criteria:

1. No out of pocket price difference or service restrictions, regardless of disability.

2. Long term care at least as strong and community-based as found in the best state Medicaid programs.

3. Full eligibility for disabled people, regardless of employment status or income.

It may take years before we can once again really focus on disability health care policy we want, and in the meantime, we will probably have to keep playing defense. But just in case we are ever asked, "What do you really want then?" I think it's a good idea to remind ourselves what we are actually after.

What do you want to see in health care policy for disabled people?

Undercooked Blog Posts on Disability and Health Insurance: Part 3

Blue Caduceus symbol representing the medical profession

I keep wanting to write some kind of definitive take on disability and health insurance. Unfortunately, the speed and sheer absurdity of the Trump Administration and Republican Congress' American Health Care Act forces me to slap together more of series of thoughts, and hope they do some good. At the very least, it will do me some good to try.

I will post 4 blogs in all, starting today and winding up on Tuesday. The U.S. House of Representatives is scheduled to vote on the AHCA on Thursday.

Part 1: 5 Basic Points - March 18, 2017

Part 2: A Tortured Analogy - March 19, 2017

Post Three: 3 Questions for Lawmakers

All cynicism and partisanship aside, there are lawmakers who seem like decent people, but support cruel, nonsensical policies because they believe in AN IDEA. Right now, they are mostly Republicans, and they usually have more selfish motives for regressive tax-cutting and dismantling, rather than improving a moderately successful program like Obamacare. But most of them also say they are motivated by something like idealism ... for instance, belief in rewarding and incentivizing hard work, or giving people "a stake" in health care by making sure everyone has to pay something for it.

I would like to ask these members of Congress three questions about how their beliefs and ideals play out in the real world for disabled people:

1. Do you believe that when the government provides material support for poor people ... things like health insurance, disability, food stamps ... it is fundamentally bad for them?

2. Do you think that capping or cutting Medicaid will prompt significant numbers of disabled people to get jobs, and earn more money than they do now? Do you think that having to pay more for health insurance will make disabled people suddenly get healthier, and pursue cost-saving cures and therapies we previously ignored?

3. Do you believe it is better for people with significant disabilities if the government to pays for nursing home fees, rather than the cost of home care?

There is obviously some slant to these questions. The "right" and "wrong" answers are implied. At the same time, I think they are legitimate, honest questions Congress people should at least have to answer before they vote.

Undercooked Blog Posts on Disability and Health Insurance: Part 2

Blue Caduceus symbol representing the medical profession

I keep wanting to write some kind of definitive take on disability and health insurance. Unfortunately, the speed and sheer absurdity of the Trump Administration and Republican Congress' American Health Care Act forces me to slap together more of series of thoughts, and hope they do some good. At the very least, it will do me some good to try.

I will post 4 blogs in all, starting Saturday and winding up on Tuesday. The U.S. House of Representatives is scheduled to vote on the AHCA on Thursday.

Part 1: 5 Basic Points - March 18, 2017

Part 2: A Tortured Analogy

I worry a lot ... probably too much ... about overstating how awful and / or evil the Republicans' plans for health care are. Although I believe that more disabled people WILL DIE if the AHCA is passed, I don't believe that anyone of consequence actually wants that to happen ... apart from maybe the odd Twitter troll or Bannon acolytes who enjoy dispassionately discussing the benefits of having fewer disabled people to around to weaken our bloodline or whatever.

To me, the question of intent is almost beside the point. You can do a lot of damage to disabled people accidentally, and that's usually how we get hurt, both on the policy and personal levels.

I'm a small guy, 4 feet tall, and not super steady on my feet. Whenever I think of the danger to disabled people when hostile or indifferent politicians and activists get excited about big ideas and big changes, I think of myself trying not to get knocked over or trampled at a frat party. It's not that the revelers around me mean any harm. The problem is they don't notice I am there at all until it's too late. All they can do after backing into me is slur, "Oh, sorry little buddy ... didn't see you there!" and wander off. You see, they are busy doing other things, and they don't need to have it out for me to hurt me ... indifference is more than enough.

Politics is like that for disabled people, for the disability community. People have these other objectives and assumptions that may or may not be fine as far as they go, but they only rarely take the time to check and really see whether what they are doing will work for us, or whether their awesome ideas just don't apply to us.

By the way, this is somewhat of a nonpartisan phenomenon. I had to be careful in parties at my own fraternity in college, even though I felt comfortable with these people and they had a pretty good idea of my unique situation. The main reason I didn't support Bernie Sanders' Presidential run is that he never really took the time to convince the disability community that, for instance, "Medicare For All" would include the same or better home care and community services we get from Medicaid. I don't think for a moment that Sanders wants to institutionalize disabled people, but I'm still not sure he understands how that risk relates to health care proposals, even ones lots of disabled people would otherwise support.

At the moment, however, we are all living in a straightforwardly hostile frat, where angry, hyped up, brothers seem set on making the most of a newly won and unprecedented degree of freedom. They really do want to party like it's 1955, and we can easily get trampled in the process, because it seems like we simply do not exist in their vision of American Greatness.

Undercooked Blog Posts on Disability and Health Insurance: Part 1

Blue Caduceus symbol representing the medical profession

I keep wanting to write some kind of definitive take on disability and health insurance. Unfortunately, the speed and sheer absurdity of the Trump Administration and Republican Congress' American Health Care Act forces me to slap together more of series of thoughts, and hope they do some good. At the very least, it will do me some good to try.

I will post 4 blogs in all, starting today and winding up on Tuesday. The U.S. House of Representatives is scheduled to vote on the AHCA on Thursday.

Part One: 5 Basic Points

1. Most people don't really understand how health insurance works for disabled people. A lot of disabled people don't fully understand either.

2. Health insurance isn't something disabled people choose to buy "in case we get sick." It's something we have to have because we use it all the time, just to survive and function.

3. A subset of disabled people need what's broadly termed Long Term Care, which is everyday direct help to do basic self care, like getting out of bed, bathing, dressing, using the toilet, cooking and eating, etc. Pretty much the only health insurance that covers this over a disabled person's lifetime is Medicaid. Medicare doesn't cover it. Almost no employer-provided or individual market policies over it. Medicaid is the whole ballgame.

4. One way to control the cost of our care is to provide all the care possible in our own homes, rather than nursing homes and other institutions. Again, individual cases vary, but in general, supporting home care is cheaper and it's what most of us want anyway. But you have to be deliberate about doing this ... it won't just happen by lifting regulations and giving everyone theoretical "choices" with insufficient resources. And let's be clear, the savings from switching decisively to home care would be significant, but not revolutionary.

5. Individual cases vary, but overall, disabled people cost more to cover than pretty much everyone else ... sometimes a lot more. And there is almost nothing individual disabled people can do to mitigate this. Market flexibility, financial "skin in the game," and "personal responsibility" have little to no impact on our concrete needs. At best we can trim at the edges with assistive technologies and creative self-care techniques, but frankly, most of us have pushed the envelope on that already.

The point being ... there is really no untested way to save massive amounts of money on disabled people, other than to let us die or become permanent adult wards of overworked, under-resourced families. There is no super-obvious, low-hanging fruit of neglected solutions in this field ... aside from the fore mentioned shift away from nursing homes towards home care. Even that can only save so much. And there's currently basically nobody and nothing in the for-profit or even non-profit private sector that can meet the needs of disabled people without government funds.

There are no miracle cures for most disabilities, and their are no miraculous private-sector fixes to disability policy.

Affordable Care Act Repeal

Light grey crosshatched background with black capital letters reading: ACA Repeal: Reasons & Consequences

There are two aspects of the disability community’s discussion about possible repeal of the Affordable Care Act that I think need more clarity. First is the enormous variety of reasons, good and bad, that people have for opposing the ACA. The second is what the actual consequences of repeal would be, (with or without replacement), for people with disabilities.

Over the weekend I did some brainstorming on these questions, which I want to share. I’m not going to go into depth on each item or observation. I just want these ideas out there.

First question: Why do people oppose the Affordable Care Act?

1. Philosophically & morally opposed to government involvement in another major industry -  healthcare.

2. Philosophically & morally opposed to the individual mandate to buy health insurance.

3. Believe good health insurance is a reward for hard work, not a universal right.

4. Want better health insurance, but don’t trust the government to handle it right.

5. Believe the ACA is too much of a gift to private insurance & pharma industries.

6. Want a single payer national health insurance program.

7. Unwilling to sacrifice any (more) of their own wealth to make things better for others.

8. Wealthier people who resent paying higher taxes on their excellent private health insurance plans.

9. Marginally poor / working class people who resent paying premiums on the ACA markets while others get Medicaid.

10. Blame rate increases on the ACA, even though rates almost always went up each year BEFORE the ACA.

11. Still associate the ACA with the website rollout debacle.

12. Unaware of how crucial the ACA has already become to tens of millions of people.

13. Don’t understand how popular parts of the ACA, like covering pre-existing conditions, depend on unpopular parts, like the individual mandate.

14. Some younger, healthier people would rather pay extra-low premiums for very bare-bones insurance plans that the ACA prohibited.

15. Confusion … some honest, some willful … between repealing the ACA and fixing its flaws.

16. Not clear on what the ACA is, what Obamacare is, or how health insurance even works. It’s all confusing and yuck!

17. Believe the ACA is a disaster because “everyone” says so.

18. Instinctively don’t believe that Trump or like-minded Republicans would really do anything truly harmful.

19. Believe that some are just panicking, while others stoke the panic for partisan political reasons.

20. Compelled to undo Obama’s signature accomplishment because … well … OBAMA.

Note that you don’t have to think all of these things at once to oppose the ACA. In fact, some of these reasons come from polar opposite ends of the usual political spectrum. And, it should go without saying that I, personally, do not subscribe to all or most of these reasons. It should go without saying, but I feel like I should say it anyway. I love "Obamacare." It enrages me that a few slightly different election outcomes in the Midwest and we would be discussing serious plans to make the ACA better. But, things are as they are, and instead we're on the defensive. So ...

Second question: What are the likely consequences for disabled people if the Affordable Care Act is repealed?

First of all, let’s talk about people dying. Saying "disabled people will die" probably sounds like politically motivated exaggeration to a lot of people who aren't familiar with disability issues. Disabled people WILL die of course, if the ACA is repealed. Even if is replaced, if it is replaced with any of the models Republicans in Congress are batting around now, people will die who wouldn't have died otherwise.

However, premature death isn't the only consequence of ACA repeal for disabled people. To mention just a few others:

1. Ending Medicaid expansion in states that opted to implement it would cause many medium-income disabled people to lose Medicaid eligibility.

2. Losing Medicaid means losing home care, which many disabled people absolutely must have in order to live independently and productively.

3. More disabled adults would have to continue living with parents, or go back to living with parents, curtailing their life development and exhausting families physically, emotionally, and financially. 

4. Many disabled people, deprived of work, unable to function independently due to loss of home care and other supports, would wind up in the care system of last resort: nursing homes ... paid for by Medicaid once every penny the person has is spent.

5. Most disabled people need and use health insurance all the time, not "just in case." We can’t shop around or risk going without in order to economize.

6. Chronic and delicate medical conditions would go untreated, or inadequately treated, resulting in more illness and disability, which is both traumatic and costly.

7. Lack of health insurance, and insecure health insurance, makes it much harder for disabled people to get and keep secure employment.

8. Disabled people who have jobs that include health insurance would be trapped by their jobs, unable to pursue better, more suitable employment opportunities.

9. Not being able to stay on parents' health insurance in the early 20s would make independence and starting strong careers much harder for disabled youth.

10. Disabled people who have managed to cultivate fulfilling life goals and dreams would be thrown back into sheer survival mode, to nobody’s benefit.

These consequences are serious enough, without even considering an actual death toll.

So, what does all of this suggest about how to confront ACA repeal? I don’t know. Maybe just that while we hammer away at the broad, blunt concept of ACA repeal, we also need to pick apart the opposition and take time to explain in detail what it all means specifically for disabled people.

Yes, it's annoying and offensive that we keep having to explain ourselves. But if ever there was a time to repeat the obvious to people who should already know, this is probably it.

Talk To Your Doctor

cartoon icons of a doctor and a patient talking to one another
Sarah Kliff, Vox.com - July 8, 2015.

I don’t have a problem with Medicare paying doctors to have “end of life" consultations with their patients. All that talk about “death panels” a few years ago was cynical nonsense, meant to stoke peoples’ fears in order to defeat the Affordable Care Act. I don’t believe there’s a plot to hoodwink people into agreeing to euthanasia or anything like it.

That said, Sarah Kliff is onto something when she writes about peoples’ fear of losing control to professionals and bureaucracies. It’s a real fear, exaggerated, but based on real-life experiences people do sometimes have with merciless insurance companies and dismissive or condescending doctors.

Many disabled people have a related, but different concern. It may be hard for non-disabled people to believe, but I think all of us with disabilities wonder from time to time whether some day our disability-related needs will finally be too much for our coworkers and supervisors, our schools, our families and friends. Long term care is widely understood to be a family problem, a stressor that breaks marriages and causes burnout, for the caregivers. Medical technologies like ventilators and wheelchairs are still spoken of as traps and millstones, not life-savers and mobility aids. Again and again we are told, indirectly but loud and clear, that a significant number of our fellow citizens bitterly resent their tax dollars paying for any of our care and maintenance, which is assumed to be some kind of major risk to public solvency. The constituency of people who argue for legalizing suicide huge, based on the assumption that ongoing life with disabilities is intolerable and any sane person would rather be “allowed” to die. It doesn’t help when experts who one minute are all concerned about peoples’ wishes being known and respected, can’t help themselves from noting how much it costs to keep people alive “on machines."

On top of that, I think there is a legitimate concern that medical professionals tend to view life with disabilities quite negatively, in some cases worse than less informed laymen. To many doctors, disability means life with everyday care needs that will never result in a “complete recovery.” A reasonably good outcome for us may, for many doctors, seem like a professional failure.

The crux of the problem is that too many people confuse disability with this vaguely defined period known as “end of life.” They are not always the same thing.

I’m not worried about people who have lived with disabilities for a long time. We know the score, and we can speak for ourselves in no uncertain terms about what “quality of life” means to us, regardless of anyone else’s perceptions. What worries me is people new to disability, and people not disabled yet, trying to think intelligently about what they would want if and when it happens to them. What will they understand about living with disabilities if they only hear about it from a doctor?

All that can be addressed, however, so that “end of life conversations” can be valuable and empowering. Really, disabled people should push harder than anyone for these explicit, very specific conversations. If we want our lives to be valued, if we want to live no matter what the cost or how scary and icky we look to others, then should use these conversations to speak up and say so, very specifically, individually, to our own doctors.

Which reminds me to stop procrastinating and review my Health Care Proxy and Advance Directives … and to have a conversation about these things with my doctor.


Recommended: "Our Birth Story"

Sawbones: A Marital Tour of Misguided Medicine
One of the gulfs between disabled people born with their disabilities, and parents of kids with disabilities, is how we think about the birth itself and that first discovery of disability. While all of us with disabilities can understand, intellectually, that it had to be one of life’s worst moments for our parents, we don’t want to dwell on that, because somehow that implies that we are one of the worst things to happen to our parents. We know that's not true either, but that can be hard to remember, given how many parents talk about it.

Meanwhile, special needs parents crave some recognition and understanding about what they went through … a connection and empathy that might be impossible for other parents to give. Even we, their children, can’t fully connect, because we have our own complicated issues with “that day” in the hospital.

All of which is just an overlong introduction to an extraordinary podcast episode I just listened to. It is called “Our Birth Story”, and it is the latest installment of Sawbones: A Marital Tour Of Misguided Medicine.

Sawbones is hosted by Justin and Sydnee McElroy, husband and wife. Justin is a podcaster and comedian, and Sydnee is a physician. Together, they take a humorous look at some of the bizarre twists and turns of medicine throughout history. Lately, several of their shows have been related to reproduction and birth, because Sydnee was pregnant with their first child. This episode is a departure because it is about their actual birth experience, and it is only funny in the sense that these two can’t help being funny … otherwise it is an amazingly vivid description of what happens to parents when things don't go according to plan in childbirth.

Their little girl Charlie is fine, so their experience isn’t a direct parallel to disability. However, I really felt that regardless of the ultimate outcome, Justin and Sydnee had a lot to say that I’m sure parents of kids with disabilities can relate to, especially the “white knuckle terror” of knowing something is wrong and being powerless to do anything about it … and not even being told what’s happening. At the same time, Justin and Sydnee are smart and level-headed people, so they are able to view their experiences with at least some objectivity, which makes the podcast bearable and informative.

Listening in my car, I though a lot about my parents and their "that day" ... including my father, who was a Pediatrician.

I would be especially interested in what any special needs parents think of the podcast.

More Important, Not Less

Center for Medicare Advocacy

Medicare plans to stop approving purchase of speech devices … electronic machines that generate speech for people who can’t speak due to a disability … for people in health care facilities like nursing homes. Picture Stephen Hawking with his voice synthesizer.

The rationale, it seems, is that such facilities provide total care, so it’s less important for the patient to be able to communicate.

The same rationale use to be used … may still for all I know … to refuse purchase of electric wheelchairs and mobility scooters for people in nursing homes and other institutions. Someone in such a facility doesn’t need to be mobile in an institutional setting, because the institution does everything for them.

In both cases, this is a twisted rationale only a penny-pinching bureaucrat could come up with. I’m not knocking penny-pinching bureaucrats. It’s not horrible for someone to ASK whether these devices are still necessary for people in medical facilities. The problem is that other people with some knowledge of health care and disability (including disability rights) should answer that yes, they are necessary. In fact, they may be more necessary since even the “best” institutions tend to curtail patient mobility and healthy activity, and communication is the patient’s best protection from neglect, abuse, or medical error.

Let me say it again … it’s fine to question what some might see as “sacred cows”. But the accountants need to sit down and shut up when the items they want to skimp on are found to be, in fact, vital.

Click the link above to write to your Members of Congress.

"Smart Ass Cripple" & "The Mouth"

Recommended Links
Smart Ass Cripple - July 9, 2014

Harriet McBryde Johnson, Mouth Magazine

I hesitate to write about the negative side of disability. People are already predisposed to think that disability is more horrible than it usually is. They don’t need to hear more depressing, horrific stories. However, I think it is important to note that in both of these articles, powerlessness and fear stem as much, if not more, from how people and “systems” deal with disability, than from disability itself.

To get the help they need to live independently and productively, people with significant physical disabilities have to run their lives by committee, and prove their worthiness in ways few non-disabled adults are required to do. And, in moments of crisis and our greatest need, our wishes and knowledge are often overlooked or ignored. One can argue that we wouldn’t be in these positions if not for our disabilities. On the other hand, there is no valid reason why our disabilities should require us to surrender our autonomy or safety. To the extent we do, it is because of how other people, and society at large, choose to deal with disability.

Anyway, these articles moved me in different, though equally powerful ways.

(Thanks to Emily Ladau at Words I Wheel By for recommending the "Mouth" article).