Talk To Your Doctor

Medicare wants to pay doctors to talk about death. Expect political controversy

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.

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Recommended: "Our Birth Story"

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

Don’t Let Medicare Take Away Severely Disabled People’s Ability to Communicate!

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"

A Cripple with a Care Plan

Smart Ass Cripple - July 9, 2014

Not Another Peep Out Of You

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).

Health Care Survey

If you have a disability, or are connected in some personal way to the disability experience, I urge you to click the link above and complete the online survey from the University of New Hampshire, about your experiences with health care. I’ve done it, and it seems really well-designed, and best of all, brief.

It’s good to see some attention focused on the gaps and differences in how disabled people experience health care.

Institutionalization Followup

NJ disabled woman's parents want to know why the state is forcing her to move after 30 years

Amy Ellis Nutt, The Star-Ledger - May 25, 2014

This article is a great counterpoint to my post yesterday about the practice of placing significantly disabled children and adults in large institutional facilities. You might say that Ellen Petroff’s parents present the other side of the argument … that their daughter, now 44 years old with multiple disabilities and health problems … needs 24 hour care from a very specific set of people which they can’t conceive her receiving anywhere but where she has been for 30 years. New Jersey's Developmental Disability program definitely needs to answer their questions more specifically than to say, “We’ll find a place”.

However, I think the article and everyone in it is missing a few basic truths. For one thing, moving anywhere after 30 years in one place is scary and risky for anyone, even those who don’t have disabilities. For another, I see hints that some of Ellen’s health problems might be the kinds that develop later in life, due to age but also to inactivity and maybe slightly complacent health care. Was she hospitalized so many times because her medical problems are just that severe? Or, could some of them have been avoided with slightly better, more creative health care? How do we know that her health won’t improve moving to a smaller group home, closer to her family, maybe with new aides and doctors able to approach her care with a fresh take?

Finally, I think the Petroff family’s concerns point to one of the insidious affects of these highly centralized, sheltered, sequestered institutions; they breed a sense of dependence and indispensability. Ellen’s parents can’t conceive of anyone else looking after their daughter. They may be right to worry, but that calls for especially thoughtful preparation, not reversing the trend towards closing institutions and helping disabled people live integrated lives in their own communities.

I do think choice should play a role here, but who’s choice? Can Ellen make a meaningful choice? How relevant are her parents’ wishes at this point? Plus, there’s the specific choice to stay where you are or move, and then there are the additional choices that could open up for Ellen if she chose to leave the institution.

This is a transition period, and transitions are always hard. That doesn’t make them wrong.

"Vox" Explains: Obamacare and The Debt

The new Vox news website finally has some content other than its introduction. It has also already sparked some controversy due to some of its new hires … plus the inevitable buzz suggesting that these youngish, nerdy, progressive-ish journalists have sold out in some way. I still think the project is worth following, and that the idea of journalism doing more to “explain” the news is a good one.

Here are a couple if videos that seem to represent what their work will look like. They are also on topics of some interest to people with disabilities. The Obamacare / health insurance connection is obvious. As for “The Debt”, well it’s not really a disability issue per se, but I think it’s important to keep in mind the actual nature of the dreaded federal budget deficit when politicians insist that “there’s just no more money” for anything we want to do.

How Obamacare’s individual mandate works … in two minutes

Stop freaking out about the debt

A Bit Of Mainstream News News

I usually don’t bother posting about non-disability-related topics, but something is about to happen that I think should matter for people with a higher than average stake in health care should care about. Ezra Klein is leaving the Washington Post. Klein has been one of the very few truly “honest brokers” of information and perspective on the Affordable Care Act (Obamacare) since before the law even passed. As others are saying all over the place, Ezra’s departure is a loss to the Post.

Fortunately, the other honest broker on the ACA, Sara Kliff, is as far as I know NOT leaving the Post, so we’ll still be able to read her outstanding coverage of all things health care at the Washington Post Wonkblog.

My Obamacare Experience, Part II

I said back in early October that I would document my Obamacare experience, so here's the next installment.

A few days ago, I went back to New York State's Insurance Exchange website, nystateofhealth.ny.gov. I found that the account I wasn't sure I'd properly set up in early October, was set up properly. I then started a full trip through the website to find out what I might qualify for, given my slightly unusual situation. So far, everything has worked out fine, and I have a pretty good idea of what's going to happen with my health insurance.

First, I'll continue with a slightly different plan that my former employer has chosen, which I'll pay for through the COBRA provisions. Sometime in January or February, if the information I have is correct, I'll move over to Medicaid, which I will stay with unless and until I find a job that ups my income sufficiently and / or provides better coverage. Given the breadth of Medicaid coverage in New York, it may be hard to find a better policy for any price, but you never know.

My conclusions? Speaking only for myself ...

1. New York’s Exchange website worked fine, supported by a helpful and fairly quick phone call when I had trouble understanding one of the questions put to me.

2. It looks like I have marginally more choices in health insurance now than I've ever had before, more possible contingency plans should my employment or money situation change, and a confidence I never had before that my health insurance ... which is absolutely essential to my survival ... will no longer depend on my employment status.

By the way, I once again recommend following Sarah Kliff’s daily updates on the Affordable Care Act, at Washington Post’s Wonkblog. Her reports are easy to understand, sober, and in-depth.

Obamacare Update

I haven’t tried to explore buying health insurance through HealthCare.gov since the first couple of days of this month, because I figured what’s the point? I’ll probably give it another week or so … maybe even wait until late November. Meanwhile, here’s a pretty good summary of what’s going on with the exchange websites:

Here’s a link to the full Wonkblog post.

Followup: From An Old Familiar Place

I thought of a couple of things late last night, after I reblogged and commented on that account of how a young woman with Cerebral Palsy was treated by an ER nurse.

The story made me instantly angry in a way that very few things do. I shared it because of that, and because I think it's important to remember that sometimes, things really are as bad as we say they are … that while being a chronic misanthrope isn't healthy, it isn't always entirely wrong.

What I only thought of later is that this was a somewhat rare case when a person's fundamental ableism was in the raw, explicitly stated. In a way, that's a good thing. Usually, we don't actually hear people say we're not a "real person". Instead it's a tone of voice, a look, a reticence. In medical situations, it often manifests in a subtle disconnect. They ask us questions and we answer, and their responses and followups suggest that our answers were not accepted at face value. From there, it progresses to where every conversation with a doctor or nurse has a subtext … like they think something about us that they're not saying out loud. And of course, we feel paranoid for thinking that. It can be a real mess.

One other thought. What the nurse said seems very extreme, something probably very, very few people believe. It's one thing to be uncomfortable around people with disabilities, or have no patience for our "special needs", but it's quite another to assert that we are not "real" human beings in some fundamental way. But we can't forget that not so very long ago, the idea that people with certain types and degrees of disability didn't deserve the same basic rights as other humans was a mostly accepted and acceptable point of view. And it turned out to be a horribly short walk from abstract philosophical theorizing about genetic "contamination" and "humane" ways of "reliving suffering" to the Nazi T4 program, carried out mainly by medical professionals in what was at the time one of the Western World's most highly educated and "cultured" countries.

It's quite possible that nurse has problems and crises in her life that led to her outburst. But the nature of her outburst was pretty specific, and came from a familiar pool of ideology. The horror isn't that she said those words on a particular day to a particular person, it's that the ideas behind those words still have currency for who knows how many people.

It Can Be This Bad

One of the people I "follow" on Tumblr just reblogged this story, and I reblogged it myself. Now I'm including it here because it needs to be everywhere. For clarity, I'm going to actually quote the whole thing below, then add my comments. Original post by Feminist Rocker, reblogged by Andrea Shettle's Tumblr.

(One of my best friends on campus has cerebral palsy, and is confined to a wheelchair. Between the CP and a strong accent, she sometimes has trouble making herself clearly understood to strangers. She is having a strong allergic skin reaction to something; her aid has gone for the night, so I go with her to the hospital. The nurse is crouched down in the waiting room beside my friend’s chair.) 

Nurse:   “And how old is she?” 

My Friend:   “20.” 

(Instead of responding to my friend, the nurse looks at me.) 

Nurse:   “Is that correct?” 

Me:   “I would assume. She can speak for herself. I’m only here as a friend.” 

Nurse. “And for how long have you had these symptoms?” 

My Friend:   “I noticed them this morning, but they’ve gotten very bad.” 

(Again, the nurse looks at me instead of my friend; I say nothing. She continues doing this for several moments, asking questions and then looking at me, until my friend finally snaps.) 

My Friend:   “You talk to me, not her! She’s my friend; she doesn’t know anything about my medical stuff.” 

(The nurse stands up and storms away. I follow, more than a little angry on my friend’s behalf.) 

Nurse:   *to me* “You may think it’s nice to let her pretend to be a real person, but some of us are trying to run a hospital.” 

Me:   “Excuse me?! She’s in a wheelchair; she’s not stupid! She IS a real person.” 

Nurse:   “Well if you want to pretend that’s true, that’s on you.” 

(I am struck completely silent in rage and shock. A doctor, who I haven’t seen until he SLAMS paperwork down on the desk, interjects.) 

Doctor:   “Nurse. Supervisor. Now.” 

(The three of them go back into an office where the nurse comes out in tears; she was suspended for her behavior.)

Stories like this need to be circulated. They need to be read by people who claim that ableism isn't such a big deal, that it's "annoying but benevolent", that it's "harmless". People need to read these stories, including people with disabilities who have been lucky enough in life to experience only minor insults and bureaucratic hiccups. People like me, most of my life.

Shit like this happens. People like this do exist. I still believe that people this poisonous about disabled people are few and far between, but they make up for their low numbers by doing massive damage wherever they go.

And to me, the most galling thing is that people like this nurse probably do believe they are being brave and bold to stick up for their twisted concept of reality. That nurse may have been crying when she left, but I bet by bedtime she was telling herself she was another martyr of "political correctness" or somesuch. Sensitivity training can't help someone like this.

Reblog: More About Obamacare

From Joe Hill's Thrills ...

My Obamacare Experience, Part 1

I live in New York State, and the Health Insurance Marketplace website for the state … NY State Of Health … isn't working right now. The home page comes up just fine, and I was able to create a registration account so I can log in at whatever point that becomes a thing. But the home page carries this message:

"Attention:
Due to overwhelming interest in the NY State of Health - including 2 million visits in the first 2 hours of the site launch - the health exchange is currently having log in issues. We encourage users who are unable to log in to come back to the site later when these issues will be resolved."

… And when I click the big, prominent "GET STARTED" button, I get a raggedy error message.

There's plenty of time left in the open enrollment period so I'm not worried about the website's glitches. I won't get mad about it unless it's still like this in a few days. Actually, I'm hoping that maybe trying it out after 10 PM or so might do the trick.

Right now I am paying out of pocket for extended heath insurance through my former employer, so I'm actually not sure what new options I'll have under Obamacare (The Affordable Care Act). Maybe it'll just say "You're good, come back next year." Sooner or later though, it's going to be important, and I'd like to know my options as soon as possible.

By the way, my brother and his family live in Vermont. Just for fun, I tried Vermont's Health Benefit Exchange website, and it seems to be working fine. Of course, Vermont has like 12 citizens … 20 during ski season … so it's easier for their website to handle the strain.

Here are two very good Obamacare explainers …

• One in Q & A format.

• The other a flowchart, if you're into that sort of thing.

I plan on blogging about my experiences with Obamacare for as long as my initial inquiries and ... possibly ... enrollments happen. I should also disclose out that I strongly supported health care reform, and although I'd prefer something like a Canadian-model single-payer system, I do believe the Affordable Care Act will turn out to be a vast improvement, if not for me, then for millions of others and for all of us in the long run. In other words, for the time being at least, I am PRO Obamacare.

No matter where you live in the U. S., if you want to know where you stand, start here: HealthCare.gov.

More About Home Care

Rick Perry loves the part of Obamacare Peggy Noonan hates

Ezra Klein, The Washington Post - August 22, 2013

Another followup on the Community First Choice component of the Affordable Care Act, from the "Wonkblog" …

"The program is so irresistible that even Texas Gov. Rick Perry is asking if his state can be part of it."

There's one aspect I'm still not clear about. From what I've read so far, Community First Choice will fund home care that is provided for pay by family members, but will require there to be a third-party involved who isn't a family member in order to guard against conflict of interest. That seems to be the case when the person with a disability is severely cognitively impaired and has a guardian. But what about the majority of home care users who make their own decisions? Will they have to have a third-party manager or watchdog if they want to hire their mother, father, sister, brother or spouse? Personally, I think it's a good idea, but I don't think it should be required. I've known people who are fine with everyday direction of their own care, but frankly could use some help and support to deal with really tricky personnel or administrative problems. I've also known plenty of home care users who are more than capable of running their own show, and dealing with whatever problems arise.

"Wonkblog" Kicks Ass

Peggy Noonan attacks Obamacare for doing what Peggy Noonan wants Obamacare to do

Ezra Klein, The Washington Post - August 20, 2013

This is an outstanding article that almost entirely clears up the apparent issue I wrote about a few days ago, about how Obamacare may or may not affect parents being paid to provide home care to their sons or daughters with disabilities. In short, the problem originally cited turns out not to be a problem at all, and it's possible that anxiety about the confusion was whipped up on purpose to discredit the Affordable Care Act itself.

Obamacare will extend good coverage of home care to many more people, in states where it is now absent or minimally offered. It will allow family to be paid care providers. At the same time it will require a non-family member to oversee design of the care plan, thereby at least partially solving the potential conflict of interest problem, as well as providing possible troubleshooting should family care take a sour turn.

I can't emphasize strongly enough that anyone interested in how the Affordable Care Act develops should read The Washington Post "Wonkblog" daily. They are providing in-depth, dispassionate, and very readable analysis of every aspect of the law, every step of the way. It's an essential resource.

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P.S.: If you want to know how some piece of health care policy will affect people with disabilities, check to see what ADAPT thinks. They know their stuff, and when it comes to partisan politics, they are entirely agnostic ... or to put it more crudely, they don't give two shits about Democrats or Republicans.

This Looks Like A Job For The "Wonkblog"

Chantilly bakery gives disabled workers ingredients for success

Tara Bahrampour, Washington Post - July 21, 2013

It's hard to tell from this article whether this is a genuinely empowering, admirable venture, a disability sweatshop, or something in between … like one of the thousands of programs that mean well, but which still operate under assumptions unexamined and unrevised for years, maybe decades. What's really disappointing about this story is that the Washington Post has the resources and journalistic muscle to ask really useful questions. Yet, there are only two sentences in the whole article that indicate any awareness that there's a debate to be had about fair wages and worker rights in various hybrid workplaces / training programs for people with disabilities:

"The employees, who range in age from 21 to 58, work from 8:30 a.m. to 2 p.m., make $7.25 an hour and have sick leave, vacation days and profit-sharing. Some have worked there since the 1990s."

Well … how about some followup on that? $7.25 is Virgina's Minimum Wage. Lots of "sheltered workshops" pay less than that, so this is a good sign. But, do any of the employees with disabilities get paid more than the minimum? What about the ones who have "worked there since the 1990s?" What about health insurance? How do the wages of the bakery's disabled workers compare with the non-disabled workers … like the cashier mentioned in the article? Also, out of all the workers with disabilities in the bakery, since the '90s, have none of them turned out to be able to handle management, customer service, or cash-handling duties? Or, are they only allowed to work in the kitchen? I don't know, because either the reporter didn't think to ask such questions, or she did, but an Editor didn't think the answers were interesting enough to include in the finished article.

Look, this place really does seem a bit better than a lot of employment programs, but I'd like to see some of the Post's other reporters … Like Ezra Klein, Sarah Kliff, and Dylan Matthews at Wonkblog … dig into this as an economics and policy analysis story. What is the state of the art in disability employment? What factors play into how people with disabilities are paid, the hours they work, their opportunities for advancement? How does Obamacare relate to Medicaid, Medicare, and the possibility of private health insurance coverage through an employer? How does all of it rate to the coming Apocalypse for Social Security's Disability program?

In short, why do these always end up being human interest stories, when there's hard news right there waiting to be reported?

Obamacare

Ping Your Reps, Following Up

Tim F., Balloon Juice - July 18, 2013

Balloon Juice is a liberal / progressive blog, and this post suggests asking Republican representatives' offices to test how they handle questions about the Affordable Care Act, (a.k.a. Obamacare), but I think people with disabilities should do this with our members of Congress regardless of party. Part of the purpose of this is to see how well members of Congress respond to questions about the Affordable Care Act ... especially if you already know a particular member opposed it. Most members, regardless of party, place a high value on "constituent services", meaning helping out individuals in their districts. However, Obamacare remains a highly politicized law, and there may be a few members of Congress who will cross the line, so to speak, and provide poor or inaccurate information to constituents just to mess with implementation.

Call if you don't know what Obamacare is about, but call even if you do. Be sure to mention your disability, if you have one. And if you have Medicaid, Medicare or private insurance already, don't assume that Obamacare has nothing helpful to you, especially if you work or are constantly teetering on the edge of eligibility for things. This is how calling to "test" your representatives can also be an occasion for some more focused disability advocacy, to help make even the more supportive members aware of our unique concerns.

I also recommend at least one visit to Healthcare.gov, the big website that will apparently be the hub for Obamacare information and applications.