How it should be, almost

I had an appointment with my pulmonologist last week. Well, I thought I had an appointment. He's a doctor I really like whose office is really too far away. But, quick, name three doctors you've had that you loved? I currently work with two (my primary doctor and this pulmonologist) and I know how rare it is to love how they do their job to help me. I'm in charge and they're very bright, talented consultants who give me advice. That's how all health care should feel, right?

So I drove two hours to see this guy, got there and found they had me scheduled for an appointment at a different office across town. It was 4 pm, plus the doctor wasn't across town, he was there with me. It was just an inexplicable screw-up. While I sat in the waiting room for about an hour at least four people funneled through for this same doctor. It was an amazingly efficient place.

Within two hours of my showing up more or less unexpected, I'd talked with a respiratory therapist, a nurse practitioner, and my doctor, who stayed late to meet with me and never once acted like it was an imposition. I hadn't seen him in a year-and-a-half and I went mostly to make sure my trach and vent were still the appropriate pieces of technology to be counting on for air. This idea was prompted by the fact that my trach model has recently been redesigned and it never said so on the package, so some important design differences were first noticed while changing trachs. (!) And also because at least one person has died in the past year from a vent malfunction where this model I use automatically turned itself off without alarming. (!) I've got my own personal safeguards against that, but still.

Anyway. We talked about all that. I got some new medications to try, both for allergies and to manage lung secretions (a typical vent-user issue).

And then my doctor did something that explains why I adore him so. He showed me how to change a vent setting.

Now, I know how to turn the dials and all, and I do conscientiously change some settings as needed. But he showed me something new to try if I felt short of breath. Most medical professionals won't even discuss this type of thing -- this self-empowerment in the use of a highly complex medical machine. They write the prescription for the settings and want you to leave it alone. And if you're not going to follow their directions, they want to make sure no path of liability leads back to their door.

There's some basis for medical professionals not wanting you to use medical stuff willy-nilly, of course. Prescription vent settings exist for the some of the same reasons pharmacies are not bag-your-own types of stores. It takes knowledge to know exactly what drug or volume setting will be best for your health. (A bag-your-own pharmacy sounds kind of thrilling, doesn't it?)

But here's a difference for some of us in those two scenarios: When you take a prescribed drug and there's a bad side effect, you can just not take the next one and no one will show up to shove that pill in your mouth just because the prescription said that was the recommended treatment. In contrast, I've got a supply rep (he's also an LPN) who occasionally shows up to check my vent and forces it back to the prescription settings. He does this all the time, and I change them back as needed once he leaves. This is all so his butt is covered, though he could, alternatively, just document that I have changed the settings. I'm an adult with my wits about me.

No, he changes them to what I have decided doesn't work quite right for the moment (and something slightly different may work better later that same day or a few months from now). Then he lectures me on getting a prescription to reflect the change, or a sliding prescription, if possible. The supply rep did all this mere hours before I trekked to the doctor who showed me how to change the settings if I wanted to.

I did not ask the doctor for a new prescription. I don't want a new prescription. I want my prescription to reflect the doctor's educated opinion -- and I want that opinion documented in the prescription so other doctors who might see me in an emergency give it credit as a baseline prescription. And then I want the freedom to follow that or not.

I'm not reckless. And my doctor gives me credit for that. As he should.

About my new medications, though: They are nothing rare. And they cost over $700.

That is not how it should be.

Palin to speak today on disability issues

I haven't really blogged yet about my opinion on veep candidate Sarah Palin and her claim that having an infant son with Down Syndrome gives people concerned with disability issues a "friend" in the White House. Frankly, I don't find her a credible enough candidate to get very wonky about: I find anyone who believes that the End Times will occur in their lifetime fundamentally unfit to be a steward for the future of my country.

But anyway.

Palin is expected to speak in Pittsburgh today, and according to a Palin advisor she will offer specific policy details of how a McCain-Palin administration will be of any use at all to people with disabilities. It will be interesting to see her pledge her advocacy while simultaneously opposing funding for services to assist disabled people.

Earlier this week in Denver, Palin spoke against a Colorado ballot initiative designed to address the wait list of over 12,000 developmentally disabled citizens needing services like home health care and job training. Although there is reportedly no organized opposition to the initiative, Palin made a point of expressing her lack of support for Colorado disabled waiting years and years for help.

What Palin won't be mentioning in her speech today: McCain's dismal health care plan and how its goal of deregulating health insurance will assuredly shut out many Americans with pre-existing conditions -- like, for example, Down Syndrome. Or McCain's refusal to support the Community Choice Act, a bill designed to break the nursing home monopoly on government-funded health care and allow people to receive care in their own homes.

But let's see if she can play the acronym game. Look for some sort of minimal competency on the ADA, IDEA, and IEPs. See if she can do better than the rote speech on "curing" autism. Listen for even one mention of aid for adults with disabilities, those pesky grownups that should be part of any genuine "commitment to protecting life." If she references her choice to not abort a child with developmental difficulties, wait in vain for her to say what her policy details do for institutionalized disabled girls or women who get pregnant by the rape of their caregivers. Those women (possibly institutionalized due to lack of funding alternatives) would be forced to carry the fetuses of their rape to term under McCain-Palin policies, of course.

Look also for some more baby-cuddling because that's substantive policy we can all appreciate.

h/t several times over to Patricia E. Bauer

Grand Rounds: Briefing the Next U.S. President

The latest Grand Rounds, a weekly carnival on medical and health blogging, is a collection around the theme of "Briefing the Next U.S. President." Check it out at Sharp Brains.

Cross-posted at Alas, A Blog

Medical professionals who are excellent, asses and part of a failing system

My posse and I trekked into the Twin Cities this morning (despite threats of dangerous weather that have come true all around Minnesota over the day) because of a malfunctioning G/J feeding tube that needed immediate replacement. The balloon part that inflates in my stomach to hold it all in place had deflated itself and the damn thing was trying to come out, which it cannot really do without also pulling away from where it enters my upper intestine (jejunum).

This deflation and migration caused me some discomfort but not any intense pain, the hospital that installed it worked me into the schedule this morning and it was easily replaced. I returned home before people started sliding off the icy roads and all is mostly well with my world.

But there's this little drama that plays out each time I get the tube replaced and I've only just today discerned the pattern among the cast of medical professionals I spend about a half hour with -- usually every three months. The nurse who comes to get me in the radiology recovery room (for outpatient procedures I am unfamiliar with) is always male, which is fine, but curious since nursing is a predominantly female profession. He's also always incredibly personable and relaxing to be around, which I appreciate since he is my host to Events That Thus Far Have Gone Smoothly But Do Involve Medical Risk. This host has been several different specific guys in the past year, all kind and competent.

The x-ray techs are also mostly male in this high tech procedure, though today there was one woman present other than myself and the nurse I brought with me from home. These x-ray techs do non x-ray-ish things like sterilize my stomach with Betadine and arrange the surgical drapes. I expect the specialization of the nursing and x-ray tech requirements somehow explains the male predominance I've observed, but I don't know exactly how or why.

The nurses and x-ray techs have all always been reassuring, professional, caring, kind, responsive -- everything you want in medical people. The doctor shows up for five minutes to yank the old tube out and thread the new one in. The guy I usually get calls me "sweetheart" and comes and goes rather politely but quickly. He seems skilled, and I appreciate that.

But here's the thing: He's a total ass to the other people and, in subtle ways, to my nurse. It's not one isolated incident. He's displayed asshattery on several occasions now, belittling the employees under him at the hospital and treating my nurse like she and others like her are either negligent or incompetent. Today's deflated balloon and faulty tube, he asserted to my nurse, was the fault of her and others in my employ who just won't leave it alone and must have manually deflated the balloon.

The doctor discussed this with my private nurse out of my hearing, basically giving her professional chiding and advice without ever once consulting me about my care. It didn't dawn on me until today that not only am I just a body on the table that he does a quick procedure to and then leaves, but he doesn't even consider me a partner in my own care of the equipment he installs in my body. Perhaps because I have a nurse, I don't know. Maybe it's part of his abrupt pragmatism and crowded schedule, but I doubt it's as simple as that.

Meanwhile, the other employees of the hospital that he seems to consistently belittle and treat like dirt continue to shower me with thoughtful care. It's unlikely he's like that just when I'm around once every few months, right? This is a working condition for these other professionals that serve me well and might someday decide that they don't deserve this crap and move on to another job.

There's gender, ableism and a kind of professional classism at work in these dynamics I observe, and it's taken me a year of quarterly encounters and some quizzing of my nurse to get a fuller picture of it, since I'm not privy to all of it that occurs even in my specific interests. And this is an example of medical competence, really. In all ways medical, it's basically a successful encounter. And yet that successful-ness seems precarious to me because of all the power dynamics involved with this one doctor, and that's been on my mind all day.

Genni McMahon, who blogs at Ilyka Damen's, has had much more dramatic, critical problems with medical care on her mind today. Read it all, but here's a taste:

My mother became very ill the night before last with a high fever, extreme body aches, and weakness. She’s 62, swims three times a week and uses her Nordic Track everyday. She’s a partner in an accounting firm, takes no prescription medicine, and is a health nut. She couldn’t get out of bed, so my sister and I went to her house and called her doctor; he’s a skilled physician, but like most of the system, he’s a doc for profit. His office told us to take her to the ER. There, we had a really bad experience and they managed to nearly kill her, which I’ll share in a moment.

First, though, let me say that in spending the entire day in an ER, with momentary breaks to go get things from my mom’s house and take a kid from one caretaker to another, I noticed what I think is the absolute cornerstone of What’s Wrong With Healthcare In America. I’m sure you’re curious as to my discovery, so I’ll let you experience it as I did.

Anniversary -- Escaping institutionalization

This Tuesday, March 6, was the one-year anniversary of my returning home from my four-month hospital stay. What makes the date so important is that my insurance company tried very hard to have me sent to a nursing home after I'd been at the rehab hospital for two months. I was progressing with occupational and physical rehab, I was attempting to wean off the vent, and I was learning how to speak with the trach and ventilator. I was gaining weight -- up to 92 pounds from my low of 75 when I entered the ICU in November 2005.

Had the insurance company gotten it's way, I would have gone to the one nursing home in the entire Twin Cities they considered "in network" and accepting of vent-dependent clients. And I firmly believe that would have led to my death -- quite possibly in this past year.

From the beginning of my medical crisis, my parents and I had talked about how we would try our best to adapt to my changing needs -- the increased need for skilled assistance, the steep learning curve for the vent, trach and feeding tube, the medical bills threatening their financial security as well as mine. The insurance company assigned me a case worker. The hospital social workers helped us begin to navigate the system for state and federal aid. I signed over the title of my van to my folks, an act that terrified me because of how necessary and tenuous being asset-less appeared to my survival. (It's back in my name now, but at the time it was suggested as necessary.)

While I was busy at the rehab center with the minutiae of movement and breath, my parents were working to secure a home health agency and nursing care with state funding approval. Then, one morning, my Mom got a call from that insurance company case worker.

"I've got good news!" she said. "We're moving Kay to a nursing home that's closer to you so you won't have to drive so far to see her! The home is sending someone to assess Kay today!"

This is a person who knew we were working hard to get nursing coverage for me at home. And I don't know how long the insurance company had been planning to drop this bomb, but because I didn't have a telephone in my room (or, really, the ability to speak into it), she was basically telling my Mom the bomb was about to be dropped on me. My parents say they raced to the hospital -- a 90-minute drive -- to keep it from looking like they had decided to ambush and abandon me.

When I was in ICU at first, I was intubated with the breathing tube in my mouth and down my throat. For various reasons, including the Thanksgiving holiday and some scheduling around it, I was intubated for about three weeks and conscious for all but the first couple days before surgery to install the trach at my neck. Intubation by mouth is very painful on the jaw and tender throat. And frightening. During that time -- November 2005 -- I shifted emotionally from wishing I could die and stop the misery, being overwhelmed by the small kindnesses of people and the company of friends and family, and compulsively wondering if this was leading to the end. I was sure it was not, despite my on-and-off despair. I've had pneumonias that felt very deadly and like I might be rattling my way toward death, but this felt like a living transition that I would survive.

And yet, three months later, after the hardest-working, most character-building time of my life, when my parents rushed to my room at the rehab hospital to tell me the insurance company was planning on sending me to a nursing home, my absolute first private thought was, "So this is going to kill me after all."

That's not just drama. I've made a study of how institutionalization leads to the abuse and death of disabled (and elderly) folks -- especially those using ventilators. Like we feminists follow the state of reproductive choice, I have followed the freedoms and lack of them for disabled people in institutions. Abuse and death in institutions has been a theme, along with the basic immorality of warehousing people, in small activist publications like Mouth and Ragged Edge for decades.

As details about this particular facility I was slated to enter became known, it became clear to everyone I talked to at the rehab hospital that being there would likely endanger my health and most definitely halt and reverse specifics of the work I'd done in physical therapy.

As it happened, the one person at that nursing home responsible for assessing incoming inmates was away on a holiday in the tropics and did not visit me that day the insurance company woman said he would. My parents were able to break the news to me, and there would be a weekend reprieve. We learned more about the home in that time -- this home that none of the doctors, nurses, therapists, or RTs that I quizzed at the rehab hospital had any familiarity with. They couldn't recall sending any other patient there, though that was possibly due to a name change, I don't know.

Here are some things I learned about this nursing home I narrowly escaped being sent to, from my parents' on-site tour and my doctors' communication with the facility:

There was a vent wing with about a dozen people there using ventilators to breathe. When my parents visited in mid-afternoon, all these people that they saw through open doors were stuck in their beds.

I was slated for the last room at the end of the hall, as far as you can get from supervision and assistance.

There was no internet access anywhere available to inmates. And no TVs in the rooms. Patients were expected to provide their own if they wanted something to do while immobile in their beds. I suppose this is true of most nursing homes? I don't know.

There was a dining room, but when my Mom asked the home rep if I would be eating in it, she was told it was doubtful. Because of the vent, the woman said, unless I had someone of my own to assist me, I would be staying in my room for meals, and likely for everything else.

Much of the population was warehoused homeless people, probably mentally ill as well as formerly indigent, whom no other place would accept. My parents deduced that a young woman (okay, middle-aged) who cannot walk and is stuck in bed on a ventilator at the end of a long hallway without the power of speech might be vulnerable to physical attacks from mobile, minimally-supervised people with mental issues of their own.

There were RTs (respiratory therapists) on staff but all of them were off-duty every day from 3 p.m. until the next morning. (With my body adjusting to the trach and vent at that time, I was experiencing frequent "mucus plugs" that completely blocked off my airway and required immediate suction relief -- all of these events occurred for me at rehab during evening and night times. More than a dozen times I experienced these plugs, which often hit without notice. Once, I blacked out completely while the RT worked to clear my airway -- and this occurred with a night-duty RT who came immediately to my vent alarm from a desk just a few yards from my bed.*)

The ventilator I would be required to use would not allow for any weaning and would not be portable on my scooter.

I might not be allowed to use my own scooter, which in any case, would be of limited utility without a portable vent.

There was no physical therapy available to help me maintain or increase my strength, which I'd been working on daily to rebuild.

This was the only "in network" option my insurance company was giving me. Without home nursing assistance yet in place, the rehab hospital would not allow me to go home, but the insurance company expected this place would be suitable. My parents were so afraid for my safety and health that they were planning to take turns sleeping in the nursing home room with me, fighting whatever policies might prevent even that. The home care agency we were working with was racing to hire nurses, but expected it would take three weeks to a month.

It did take a month to get the nurses for home care -- and even then, only partial coverage. In the meantime my respiratory health took a little dip, likely because I was crying quite a bit from all this. Concerned, the rehab hospital doctors would not release me to the nursing home, the assessment dude never showed up, and one day, quite suddenly, the insurance company called the social worker and completely relented with the institutionalization plan. I'm sure this is because I had people: my parents to speak for me when I literally could not and wouldn't have had the energy or heart anyway, doctors and RTs who I was awake and conscious enough to build a relationship with so that they perhaps fought a little harder for me in a battle they faced with insurance companies daily. I had resources to keep me from that nursing home I believe would have caused my death. Other people do not.

This one-year anniversary reminds me of how very afraid I was to leave the hospital and the trained professionals behind for my parents' newly-learned suctioning skills and nurses we newbies would have to train. I'm home and happy, though unemployed and baffled as to how anyone who has to manage full-time assistance does anything else useful with their time. I'm hoping to figure that out in the coming year. This is a bittersweet anniversary to celebrate when I understand how very very lucky I am, and how the story is much different for other people who do end up in nursing homes and other institutions.

__________________________________________________

* Because of medication, adjustment to the vent, and a lowered cuff that prevents sudden total blockage, plugs are not an emergency I have had for about ten months now. This is the result of a lot of hard work and vigilance on my part. Conscious, alert, and in charge of my own health care here at home, I can weigh all the factors and adjust medication that prevents plugs, refuse meds if I don't need or want them, ask for suction, request more or less water in my cuff -- all without being institutionally "noncompliant" or having something decided without my input or consent. Until I was able to verbally express these wishes, my written communication was respected and "heard" by people who my family and I were able to assure cared about my preferences.

Cross-posted at Echidne of the Snakes. Check for more comments and discussion over there.

Resolutions for the new U.S. Congress

Pelosi was signed in as House Speaker today -- exciting and historic, that. I don't have much faith in her "100 hours" plan because the most important topics for this new Congress to address are too complicated to solve so quickly, but I do have hope for the year. Disability issues top the list of concerns Pelosi and the Democrats need to address:

1) Ending war and increasing peace in Iraq and Afghanistan -- From a purely economic perspective, responsible health care for injured American military personnel already endangers all of us:

More than 1.4 million U.S. soldiers have been deployed to Iraq and Afghanistan since late 2001, and about 26 percent have filed disability claims, according to raw data provided by the Department of Veterans Affairs. That percentage could grow as soldiers leave the armed forces.

''I see the whole thing as a mini-Medicare, another huge entitlement program, which is going to be sprawling out over the course of our lifetimes and our children's lifetimes,'' said Linda Bilmes, a Harvard University public finance professor and co-author of the Stiglitz study. "The big costs come when they get back . . . they stand a good chance of being really underfunded and not taken care of properly.''

Veterans groups worry that they'll be forced to compete with other government programs for funds. Not enough attention is being given to the future mental health and medical needs of Iraq and Afghanistan war vets, they say, especially given how those wars differ from previous ones.

This doesn't even count the much higher costs to Iraqis, with civilians dying from non-war-related, preventable health conditions now due to an almost total lack of access to medical care:

Zainab may be one of the 655,000 Iraqis who would be alive today if the Bush administration hadn't launched its criminally conceived and executed war. Violence caused most of the excess deaths. But 54,000 people died from non-violent causes, such as heart disease, cancer and chronic illness. They were victims of a health care system eviscerated by mismanagement, ill-placed priorities, corruption and civil war.

PetitPoussin comments on another tragic example here.

Congress' number one priority needs to be working honestly to end this conflict. Our job is to make them keep at it until it's done.

2) Universal healthcare and Medicare policy reform -- From the corrupt Republican Part D drug plan to federal requirements for proof of citizenship, recent reforms have complicated health care for thousands of Medicare recipients and shut others out altogether. Not to mention the over 46 million Americans who remain completely uninsured.

3) ADA Restoration Act -- Okay, this doesn't sound nearly as urgent as the two problems above -- and it isn't. Except that the war and increasing lack of health care contribute to the number of Americans with disabilities who must rely on the anti-discrimination law to remain a productive part of society. With Mark Foley and his vendetta against the ADA gone, Democrats have a chance to truly support disabled people by bolstering the ADA against further beatings from the Supreme Court.

House Democrat Steny Hoyer in 2004 speaking at the Tony Coelho Lecture in Disability Employment Law and Policy at the New York Law School:

When we wrote the ADA, we intentionally used a definition of disability that was broad -- borrowing an existing definition from the Rehabilitation Act of 1973.

We did this because the courts had generously interpreted this definition in the Rehabilitation Act. And, we thought using established language would help us avoid a potentially divisive political debate over the definition of "disabled."

Therefore, we could not have fathomed that people with diabetes, epilepsy, heart conditions, cancer and mental illnesses would have their ADA claims kicked out of court because, with medication, they would be considered too functional to meet the definition of "disabled." Nor could we have fathomed a situation where an individual may be considered too disabled by an employer to get a job, but not disabled enough by the courts to be protected by the ADA from discrimination.

The .pdf file of Hoyer's speech is locked from copying and pasting here, but I encourage you to follow the link and read the four principles he gives for the restoration of the ADA that Congressional action can provide. Briefly, these are 1) restate Congressional intent, 2) focus the law on discrimination and not details of an individual's disability, 3) disallow the courts' argument that disabled people must be saved from harming themselves, and 4) reassert that accommodation means finding solutions together rather than creating an adversarial relationship between employers and employees.

That's my short list of work for the new Congress to tackle. Not too much to ask.

Until every single penny is gone

Update: Liz deleted her blog Granny Gets a Vibrator, so I believe the dead links to it below represent lost writings, but her new blog is As The Tumor Turns. For those who don't understand the now-missing reference: Brenda was the tumor's name, and she appears to have been beaten into submission/remission.

The fantastic Liz at Granny Gets a Vibrator has been blogging and slogging her way through a recent cancer diagnosis and all the medical, financial and existential fears that travel in it's tumor-swollen baggage. (A quick and violent death to Brenda!) I can't say enough good things about her writing and I wish her all the strength and luck she needs for this week and until this is over.

The medical worries are bad enough, but I keep thinking back to Liz's recent rant about the financial concerns a medical crisis creates and adding her rants to the ones I work through daily in my head. (I've written just a little about them here.) Here's Liz:

The system at the "charity" hospital is a total disaster, a massive fuckup, a guaranteed death sentence. Not just for me, but for 4,000 poor uninsured people who desperately need health care every month. I'm slipping through the system's cracks: medically, there's no continuity, I never see the same person twice, no one can figure out what's going on, locate my records, or find out which doctor said what or why. And I'm slipping through the cracks financially: because I have a small amount of money left in my IRA, my "liquid assets" disqualify me from receiving free care, until every single penny I have is gone. Which at this rate could be in about three weeks....

And the struggle to figure out how to deal with the financial monstrosity. I deeply appreciate the Paypal offers, but you know, we're talking about maybe $60,000 a month? Probably more. Astronomical. Impossible. Ruinous.

I'm not going into this all detail out of self-pity, or to whine about how it's so unfair to me. This situation is not just about me. There are millions of people out there in the same sinking boat I'm in, with nowhere to turn. It's just unimaginably horrible. I sat there and watched several hundred such people suffer today, and most of them looked completely defeated, thoroughly resigned. The tired dead-eyed hopelessness in their faces still haunts me.

It is impossible and ruinous. The health care system in America is just broken. If Bush and the international gratitude his actions create don't kill us all, the health care crisis will destroy us economically as a country. And our independence one by one.

I was in hospital four months. Three different hospitals, actually. I'm unemployed now, but because I was insured as a baby before my impairments were evident or serious, and because I still ride on that insurance through my parents, who finance it, I have excellent insurance coverage.

Still. This hospital stay forced me to activate the full Medicare benefits I qualify for and apply for state aid for the disabled. I have no idea of the full cost of my illness and recovery, nevermind the current care I receive at home. The hospital bills exceed a half million, I know. But the paperwork goes round and round -- employment of the circulators probably costs half what I owe. Medicare and my insurance company send me reports, the hospitals send me totals of various things, then they all request the others pay their share, and they all send me updates on how that's working out. It usually isn't working out, so it's a self-correcting program where we go round again. I'm not sure anything has yet been paid.

There are the inevitable errors that slow this idiotic process down. At one point my medical supplier billed my insurance company, and the insurance company paid but inexplicably sent the check to some random trucking company with a slightly similar name. The trucking company cashed the check, which was a little over 20K. (Well, wouldn't you?) The supply company demanded the money they never got, the insurance company insisted they'd paid it. Someone demanded a cancelled check. Someone refused. It got kind of pissy.

There was mention of going to court, where, of course, I would get named as the delinquent defendant. I swear this is all true. Meanwhile, I'm not speaking because I'm a lazy ass vent user and, frankly, I want some alone time from all this attention and being able to legitimately claim I can't speak comes in quite handy sometimes. So, my father spent a week or two on hold. And because he has a talent for this, he eventually made someone see reason and they all grew up and fought this out without my needing to pay legal fees. I don't know if the supply company actually got paid or if they agreed to add that bill to the merry-go-round again.

There was discussion while I was in the rehab hospital about whether or not my parents would need to spend down their assets to nothing so that I could receive the continuing care I need at home. My retired parents who have had the luck and good sense to cover their own aging butts as best as any upper-middle class couple in this broken system can were told they might need to give up everything so their 37-year-old daughter could live with them and get daily care. That's a rockin' deal for them.

The details of why this needed to be considered involve how I almost ended up in a very scary nursing home. I'll write on that another day. A hospital social worker helped us navigate the system so that only I need to be poor. Currently I do live with my parents and have 24-hour nursing care because of the ventilator and the laws attaching to receiving aid at home.

In order to get funding for home care while using a vent, it has to be qualified nurses rather than just anyone trained as a personal assistant. Though, of course, my parents learned everything the nurses need to know for my daily care from the rehab hospital staff and they are allowed to help. Because this country has a nursing shortage, in fact, my parents were on duty half the hours of every week (84 hours shared between them, sometimes 48 at a stretch) for about a month before all my nurses were found and hired by the agency required to handle this for me. If I had enough family to be present round-the-clock without pay, no one would care they didn't have medical degrees. (More on that, too, another day.)

In order to keep the funding that provides this constant professional care, I have to have less than $3,000 in total assets to my name. Constantly. Forever. I get a disability benefit each month. I'm not allowed to pay my parents rent and in these first few months I haven't been out too much. So, ludicrous as it seems, it's been a challenge to maintain my total poverty. I can't invest. I pay for what I can around the house. And I do what is called a "spend down."

Many disabled do it or something similar. My college roommate used to get her personal attendant funds and college funding in cash so it wouldn't show in her financial records at the bank. And she was wicked generous with birthdays and Christmas because she couldn't use any cash to, you know, build a future for herself.

One nurse told me of a man she used to help who had his home nursing cancelled because he had too much in the bank. He called the home health agency back a day or two later, said he'd been on a spending spree and they could come back now. He was poor again.

If I didn't live with my parents, almost every cent of my disability benefit would go toward food and rent -- or maybe just rent. I would be among the poorest of the poor at $760/month, or more likely be in that nursing home with no autonomy.

Anyone who could get hit by a bus tomorrow and need a ventilator would face all of this. Or anyone who has a tumor. Or is a soldier in the war. Because the system is broken, we're all just that close to losing any hope of economic independence. Or life outside of an institution. Astronomical. Impossible. Ruinous. And a lurking threat.

Crossposted at Echidne of the Snakes
Check there for more comments.