Emily M. DeArdo

writer

politics

Invisible Disabilities and the Workforce

CF, health, hearing loss, politics, essaysEmily DeArdoComment
Fun medical equipment from the 1980s....

Fun medical equipment from the 1980s....

Take a look at the picture of me on the sidebar. (If you're reading this in email, click through.) 

What do you see?

I'm not asking for an assessment of my physical attractiveness, or lack thereof. But if you just looked at that picture,  you would think, yes. She looks like a pretty typical 30ish woman.

This is what you'd be missing: 

*You can't see my cochlear implant, tucked behind my left ear. I don't wear any hearing devices in my right ear, and there's only about 20% natural hearing left there. 

*The scar on my forehead? You can see that, but you probably don't know it's from a skin cancer removal. You also can't see the bald patch on the back of my head, from another one. Skin cancer is 10x more common in post-transplant people, because of our immunosuppression. It's not because I'm fair. (And I'm religious about sun protection, anyway). 

*You can't see that I've got about 52% lung function--which for me is good. That's great! But for normal people, if it's lower than 70%, there's probably an issue. For me, 70% is a dream I will never see again, after hitting it in 1997. So imagine working without one lung. That's me all the time--and that's GREAT. I LOVE IT! 

*You can't see the burn on my right arm, which is left over from transplant surgery. Third degree burn. Skin graft. It's rendered my right arm usable--thank God I still have it!--but it doesn't have complete function like it used to. (Knitting probably helps, though, in making it stronger.) The skin is very, very delicate. It tears easily. So I can't do a lot of manual labor with this arm--and this is my dominant arm. If you were looking at me, you'd notice, but you wouldn't have all that information. 

*Oh, and I'm anemic. I always have been. Part of the paleness. :) But that affects my stamina, too. I'm used to it, now, but there are times when I need red meat and sleep--Moreso than the average bear.

 

I'm telling you all this because invisible disabilities have been in the news lately, as a part of the new Medicaid standards the administration is considering. I look pretty "able bodied", but I'm not--as any physical exam would show. I can't use a telephone--I use FaceTime, but not a real phone. If you call me, I can't understand you. You will sound like Charlie Brown's teacher. Being immunocompromised means if I get sick, there could be a hospital stay in my future. You get the flu, you stay home. I get the flu, I can end up in the hospital. I need to be more circumspect about where I go, especially during flu season. And honestly, I need to take care of my body. That means giving it enough sleep, among other things.  

So, looking at me, you can't see these issues. But they're there. And when you compare me to an average 35 year old woman, it becomes apparent. Invisible disabilities are real. Ask anyone who has arthritis, for example. Or diabetes. Or epilepsy (which I had as a kid). They're not to be taken lightly. Just because someone looks able-bodied, doesn't mean she is able-bodied. 

As a society, we need to be cognizant of that. I'm not making policy suggestions, here, but we need to be aware that there are serious disabilities that people cannot see, and that can impact ability to work. For example, I look fine. But you don't want me to be your receptionist, or ask me to carry heavy things or fix machinery on a regular (or even semi-regular) basis. And of course, I see many more doctors than average people. I see my transplant doctor every four months--I see my ENT every four months. I see my dermatologist very frequently, and I have days where I'm out having Mohs surgery, or having things removed--that takes time. I can have surgeries scheduled at the drop of a hat. Any employers who hires me needs to be aware of those things, and needs to be flexible about them. If they're not, then I'm in trouble. And my employer won't be happy, no matter how great my work is, or how intelligent I am. Without that understanding and flexibility, a job will be hard for both of us. 

I want to provide this as food for thought, when you read about invisible disabilities, or work requirements. It's not wanting to work--it's things that make working difficult, for both employer and employee. 

*

Having said that, though, I don't think a person with a disability or a chronic illness should automatically go the SSDI/Medicaid route. Here's why. 

I think that being "normal", as much as you can, is good for self-image, self-esteem, and general mental health. I know that one of my biggest drivers growing up was that I was not going to be babied. I was going to be normal. That meant, doing my homework. Going to school. Taking exams. Etc. If I needed accommodation, I asked for it, but it was low-key. I finished high school. I went to college. And after college, I got a job. 

I knew that I would need a job with good insurance. So yes, if you have medical issues, that means you have to consider jobs with good benefits. It doesn't mean you can go off and join a non-profit that doesn't provide good medical coverage, OK? You have to be reasonable and logical. I wrote more about this here

I do not think it is a good idea for people with CF to sit around at home and bewail their state. First off, that would have driven me insane. Really. When I had to be home for four months post-transplant, after about month three, I was going stir-crazy. I have to have things to do. 

But--there comes a time, when yes, you can't work anymore. This happened with my friend Sage. When she was listed for transplant, she had to leave her job and apply for SSDI. That does happen. It's part of life. But I don't think--and we talked about this often, so I know we agreed here--that she wouldn't wanted to sit at home, either. 

Maybe you do. OK. But my feeling is, if you can contribute, contribute. BUT that requires having an employer that is flexible and that is willing to work with you. And I had that--until I didn't. Once that goes away, then life can get very difficult, and then it might be time for SSDI/Medicaid/whatever. If that time comes, then go for it. That's when people on the government side need to realize that we might look pretty able-bodied. But we're not. 

And also, when it comes to the Medicaid/SSDI system, a lot of the time, they're not talking disability like I have a disability. They're talking about worker's comp sort of stuff. Like, back problems. Problems with limbs, or standing for eight hours, and movement. The system isn't really designed for people who have chronic issues that aren't movement/skeletally based.  That is frustrating, because what I have is what I have. I'm never going to get my hearing back. My lung function may go a little higher, but this is pretty much as good as it gets. I'm never going to get better skin on my skin graft. So the government side of this needs to realize that some disabilities don't get better. They might stay stable--or they might radically get worse--but "better" is not going to happen.  

I know that before I had to deal with all this, I had no idea that any of this was true. So I think it's worth it to share these thoughts with people, so you can realize that when government talks about "disability", there are levels, and there are degrees. 

 

Seven Quick Takes

7 Quick Takes, books, politicsEmily DeArdo1 Comment

I. 

I haven't done one of these in awhile, but I thought, since I had a lot of linkage to share, I'd bring it back! :) 

II. 

If you follow me on Instagram, you know I've been so excited about the launch of Lara Casey's Cultivate book! I'm so excited, in fact, that I'll be giving away a copy next month! So watch for details! Here is my preview of the book (my real review goes up soon!).  If you can't wait for the giveaway, you can get your copy on Amazon here or at your local bookstore!

 

III. 

Since we're talking Health Care (again), I thought I'd share some links on a series I wrote earlier this year: Parts one, two, and three. I might have something else about the Medicaid stuff next week. I know some of you enjoy my policy wonk adventures, but not all of you, so I try to keep it to a minimum. :) 

Essentially, what it comes down to is this--if we want to expand something--or even create something-- we have to make it solvent. I'm reading the Chernow biography of Alexander Hamilton right now (the one that inspired Hamilton, although the more I read the book, the more I am annoyed at the liberties the musical took....), and Hamilton wrote something I found prescient: "Creation of debt should always be accompanied by the means of extinguishment." 

Or, in other words--how are we going to pay for this

IV. 

As we're heading into the Fourth of July weekend, here are some of my favorite book/movie suggestions for you. They either talk about the revolutionary war, or revolve around July 4th: 

The Killer Angels, by Michael Shaara, and the movie, Gettysburg, which is based on the novel. 

Laurie Halse Anderson's Seeds of America trilogy: Chains, Forge, Ashes

The movie 1776 (the musical. It's great! Mr. Feeney is John Adams!) 

The miniseries John Adams, and the David McCullough bio upon which it's based. Also McCullough's 1776, which is amazing. 

V. 

Also, read the declaration, and the preamble to the Constitution: 

We the People of the United States, in Order to form a more perfect Union, establish Justice, insure domestic Tranquility, provide for the common defence, promote the general Welfare, and secure the Blessings of Liberty to ourselves and our Posterity, do ordain and establish this Constitution for the United States of America.

(And also realize the difference between the two--please?) 

VI. 

If you love candles, but have a hard time finding a good summer scent, then you need this candle from the Laurel Mercantile Co. (It's run by Erin and Ben Napier, of HGTV's Home Town.) It is a divine floral smell that smells just like being outside in the spring and summer

 

 

Not only does it smell great, but it also burns very evenly and cleanly--both big bonuses. And, in fitting with the American theme of this post, it's made in Mississippi, so go American manufacturing! (Which was also something Alexander Hamilton supported. He wrote an entire paper on manufacturing and the sort of things he thought we should make.) 

VII. 

Finally....

I've been seeing a lot of "lose" vs. "loose" on the Internet this week. Y'all know the difference, right? :-p 

 

How to successfully contact your elected representatives

politicsEmily DeArdoComment

(Or, Please be short and sweet)

Some of you long-time readers will remember that I worked for the state and federal government for more than a decade. In that time, I did a good share of direct work with constituents--meaning I answered the phones, read their mail, and saw the emails that poured into the office from all directions. I learned, very quickly, that some people have no idea how to properly communicate with their congressmen/women or state representatives.

In the spirit of Civic Education, I offer:

How to Communicate Well With Your Elected Representatives

1) Be polite. That's the most important. The person answering the phone is not the state representative himself. It's an aide. No matter how angry you are, or how passionate you feel, I guarantee you that the person answering the phone did not cause all your problems and is in no way responsible for them. BE NICE TO THIS PERSON. 

2) These offices are not well-staffed, especially at the state level. At the congressional level, yes, there is more staff--because there are D.C. and district offices. But even then, there are not thirty people all manning phones who have endless amounts of time to listen to constituent spiels.

So please keep your speech SHORT. As in, one succinct paragraph. Do not get on the phone with a script from your Advocacy Agency of Choice that's multiple paragraphs--especially multiple long paragraphs. The aide doesn't have time to listen to all that and she will not write everything you say down. She will probably write something like, "Against pigeon welfare bill. Says pigeon hunting is fun" on her notepad, no matter how many minutes Mr. X is talking about the joy of hunting pigeons. 

(I honestly don't know why advocacy groups give these hugely long speeches to their supporters. They're not the best way to make your case. The poor aide just starts to tune out or freak out that the person won't stop talking.) 

3) Please make it clear what you're talking about. Don't just get on the phone and start rambling. Say, "I'm a constituent of Senator Y (maybe add where you're from, which will alert the aide that yes, you have a higher change of being a real constituent), and I am against/for Legislation whatever, and this is why. Thank you." That's it! That's all you need to say!

(Yes, people call offices of representatives that do not live in that area. I don't know why. This bugs me. If you don't live in Speaker Ryan's district, for example, then why are you calling him? Call your own dang representative! Just because he's the Speaker of the House doesn't mean that his poor aides want to hear from the entire country!)  

4) If you really want to say all five paragraphs, or you have pages and pages and pages of things to say on the Joys of Pigeon Hunting, then send an email or a real letter. Mail that is received on legislative topics is indeed noted. We were always aware of how much mail was being received about legislation. Email. Send a letter. (But still be polite!)

5) Actually talk to them about something they can help you with. When I interned for my congressman, I was in one of his district offices. People would call to talk about the city's trash collection. 

That's not a federal problem. Call the city. Not us. 

In summary: Be Polite. Be Succinct. Call your actual representative/congressperson/senator. If you have a lot to say, email/use the USPS. 

Insurance/ACA/ Health Care Part III: Thoughts and Suggestions

politicsEmily DeArdoComment

So, in the meantime, what can we do about health care/insurance costs, and the like? Here's some suggestions: 

1) Realize that even in a hospital, you are the consumer. If you don't want a certain test run, you don't have to have it run! If you don't want to go to a certain hospital, you don't have to go there! A few weeks ago I had to tell ambulance guys (I'm fine, btw) to take me to Children's instead of the nearest hospital. They looked at me oddly. "It's because of my transplant," I said. When we got to Children's, and one of the nurses recognized me immediately, the EMT realized, Oh, yes, she knows what she's talking about! 

You do not have to do everything a doctor recommends. You really don't. I know, we don't want to be difficult. We assume the doctors know what they're talking about. And yes, most of the time, they do! But not always

(Caveat here: If you don't know anything about your condition, then I don't recommend this pathway. It's only after, say, 34 years of messing with my body that I know what most tests are being run for, and what their purposes are. If I don't know, I ask. If a doctor suggests a test to me that I don't think is necessary, we have a "conversation". Or if it's contraindicated for me, it doesn't happen. Don't be in the ER and Googling random tests. That's annoying.) 

2) Know Your Body. Know what you're taking, what you're allergic to, what tests you may not be able to have. Use the Health app on your iPhone! Why know all this? Because hospitals and doctors don't always know. They don't check the chart all the time! You must advocate for yourself. That's not really a suggestion. It's something you have to do. 

I was at a Big Adult Hospital once and the nurses would come in and say things like, "We're going to do an MRI." Me: "No, you're not. I have a magnet in my head. Contraindicated." 

"We're going to give you a PICC line." "No you're not. There's no more spots for them." 

Etc. Had they read my chart? No idea. But I--and my parents, who took turns being with me--knew enough about me to say, "Nope. This isn't happening." 

If I hadn't known, or hadn't been able to speak up, then things would've been done that would've been reallllly bad. 

3) Almost all--if not all--hospitals have financial aid departments. Call them. Email them. Fax them. Whatever. Talk to them. I currently have a stack of bills from the resort next to me. I will fill out the application for financial aid, and I will send these to the financial aid office at Children's, and once they see that my "paycheck is a disgrace to paychecks", I will probably not have to pay anything, or a severely reduced amount. 

Is this a pain? Yes. Have my parents and I dealt with many, many financial officers and insurance people? Yes. Does it take time? Yes. BUT IT CAN BE DONE. DO IT. It's worth it.

4) Do not mistake "insurance" for "health care." Not the same! 

5) It is important that people with pre-existing conditions, that need health insurance, can get it. It is important to remove the work connection to insurance. But one of the big parts of the ACA is the "insurance marketplace" idea, and the idea that the care would be affordable, because you could choose what worked for you and your budget. 

But right now, there is no "marketplace" if an entire state has only one insurance company from which to choose. That completely defeats the purpose of a free market, in which competition is what is needed to keep prices low and provide consumer choice. If the choices are Insurance Company X, and Medicare/ Medicaid, that's not a choice for the average bear. 

Different people have different insurance needs. I use health care incredibly often. My brother is as healthy as a horse and has used an ER once in his entire life. He and I, obviously, do not need the same insurance plans! Thus, when I worked, I chose the most expensive insurance plan. My brother could choose the cheapest one and be OK with that. 

Right now, I have one health insurance option. Thankfully, it covers the Big Things I need. But financially, it's a tough plan, given my co-pays and the premium is crazy.  But I don't have the choice of any other insurer, whereas before, I had three choices. This is a problem, no? Because I cannot make choices about my health care. I have to "choose" the only option available.

The ACA, like many things, might be "good in theory". But in practice, there are definitely things that need fixed, while still keeping key provisions of the law that allow people with complex medical needs to get what they need. 

 

Thoughts on Insurance and Health Care, Part II: The Government Side

politicsEmily DeArdo4 Comments

I worked for the state government for 10 years, in various capacities. Before that, I interned in my congressman's office. And in both places, I paid special attention to any health care stuff that was going on. The first budget I worked on in the Senate, I had the good fortune to meet an excellent lobbyist (yes, they exist) who fought to keep the state's Bureau for Children With Medical Handicaps (BCMH) funding alive in what was a very, very, very tight budget.

The State of Ohio has to have a balanced budget. We can't run a deficit. So we can't pass a budget that doesn't add up, and that means that, as great as many programs are, we can't keep them all if the funding isn't there. Fortunately, BCMH was saved, because BCMH works with many families with kids and adults with chronic diseases, like CF. We never had to use BCMH funds, but I know that they were, and are, extremely useful to families who need money to help pay for treatment, equipment, and care. It's a nice safety net and really makes a difference to a lot of families.  

(To me, this is an important part of the pro-life ethos: helping families and adults who have chronic conditions receive good care for said conditions. That's what BCMH does. And right now, in Ohio, they're talking about cutting it again, which irritates me, because it's a program that does a lot of good for small(ish) output. So, back to the crusading we go!)   

Now, like I said, Ohio has to have a balanced budget. The federal government does not.  Hence the "debt clock"    .  (There have been various efforts at a "balanced budget amendment" over the years. Hasn't happened yet.) But that doesn't mean that the government can just make stuff happen--poof! Magic! Being $19 trillion in debt is probably not the best economic policy. And when there isn't enough money, you run into issues like the one we currently have with Social Security--it's not going to be solvent forever. At some point, all the bills come due. 

If you work for a particular member of Congress or the state legislature, you get lots of phone calls, emails, and letters. Most of these involve wanting the government to do something--and that something usually involves money. Any time you hear the word "free" come out of a politician's mouth, you should laugh. NOTHING is free. Someone is always paying for it. Now, that someone might not be you. But someone is

"Free" health care. "Free" college. "Free" preschool. "Free" whatever whatever whatever. 

Someone, somewhere, is paying for that. Let's not debate the ins and outs of whether or not these people should, or types of taxation. Let's just all agree that somewhere, someone is paying for all the "free" things. "No such thing as a free lunch" also applies to everything else. 

*     *     *

One of the things that makes America different from other countries is federalism. (Federalism--the divide of power between state, local, and federal government.) That idea is enshrined in the Constitution and it's something that also makes life....hard, when it comes to spending. 

There is always an underlying argument about the powers of the federal government and what the federal government should do. Really strict interpreters of the Constitution say that the federal government should only do the things listed in Article I, section 8, which includes things like: 

  • Maintaining "post roads"--we could probably say road maintenance today. Highways, especially, since they're interstate. 
  • Borrowing money
  • Regulating foreign trade
  • Creating and regulating the lower court system  (as in, everything other than SCOTUS). 
  • Declare war, and maintain/provide for the armed forces--there is quite a bit about this in section 8.

(Like it or not, national defense has always been something the federal government has been charged to do. It's a big part of the Constitution. "Provide for the common defense" is part of the preamble. We can argue about what "maintain" means, in concrete terms. But it IS one of the few direct things the government is charged with doing. Ergo, military spending belongs in the federal budget.) 

Now, we can argue all day about what the government should provide for its people--and there are some things the government, at the federal level, just does better. The military comes immediately to mind, as does anything to do with foreign trade and foreign governments. We need a Secretary of State and a Secretary of Defense and a  Secretary of the Treasury. Those are important Cabinet positions that do important work. 

If we, as citizens, want the government to provide something, we have to determine what we would like them to cut in order to pay for something else.  We cannot have everything, it just doesn't work. Everyone who's ever had to balance a checkbook knows this--or any kid who got an allowance. You have $10. You can buy the books, or the My Little Ponies. But not both. (Childhood examples, right there.) 

So, if we want a minimum floor of health care that the government provides--what are we willing to lose? Sesame Street funding? The calls for universal Pre-K? Head Start? Highway maintenance? Disease research? National parks? Foreign aid? Humanities spending? Public health stuff? 

No one wants to be the politician to say "we cannot afford everything", because that politician will lose in his next election. But it's true. We really cannot afford everything. It's just not possible. 

*     *     *

What if we revamped the ACA so it was more like a safety net of health care? 

And by "safety net of health care", we could say: vision. Dental. Basic medical care: primary care guys, basic surgery, urgent care/ER stuff. Maybe specialists and certain types of special care (chemo? etc.) Not Viagra. (Sorry, guys.) Not birth control. (Sorry, ladies!) Not cosmetic surgery, etc. But things that actually are vital to health. To keeping you alive, or fix big issues, like eyesight or hearing, that can really improve people's lives.  

Again, this would be nice. The question is: how do we administer it? How do we make it happen? How do we codify it? (Get it into law) And above all, how do we make it effective, so people aren't waiting years and years to get things they need?  

The easiest thing, in my mind, would be to just call a spade a spade and say it's a tax. It just is, like Social Security. You just pay it. It gets taken out of your paycheck. Stop it with this whole "you have to buy insurance but it's not a tax" thing. It is. It's a tax. Just call it what it is. Say that we're going to have a certain bedrock level of care that's going to be low-cost because everyone is paying for it. 

We do have to get rid of the connection between employment and health insurance. And we have to get rid of the inability for people with actual health problems to get said health insurance, because we're the ones who need it. We also need to fix Social Security Disability so that states cannot deprive certain populations in their states from being eligible for SSDI. 

But all of this is insanely complicated to codify, especially since we have 50 different state laws regarding health insurance mandates and what needs to be covered. The national law generally overrides state law--so while Colorado has "legal" marijuana, technically that's against federal law, and if the feds wanted, they could prosecute the state of Colorado. But, for example, Ohio can ask insurance companies to cover blood sugar monitors for diabetics, but Illinois could say, "nah, we're not going to require that." 

So really, in my mind, we need to get rid of the employment thing first, and cover people who need covered. That has to happen. Then we can talk about what else we want. 

Because American health care--as in, actual care--is quite good. I'm alive because of it. We do lots of crazy things here that are awesome, groundbreaking things. 

What is not awesome is the insurance system. It is, to be kind, a bit insane. 

"Politics is choosing," some one in some political movie said. (I think it was The American President.) We have to choose. What do we want our government to do? What is our government's job? And then go from there--but realizing that nothing is free, and that if we want something, we have to be willing to give up something else.  What are we willing to give up?