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It’s that time again, I’m writing in response to A Chronic Voice’s monthly linkup

March prompts: weighing, targeting, being, doing, staying

This month, I was inspired by the struggles my partner Al and I have been having the past few months with three different programs designed to help our most needy populations: Medicaid, LiHEAP(Low-income Heat and Energy Assistance Program), and Charity Care.

The incompetence and delays around these supports has been weighing my life down lately

While I’m mostly managing it, I’m frustrated that I’ve had to invest as much energy as I have while still feeling like it’s gone nowhere.

These are things that shouldn’t have been that hard and yet, due to other people either not doing their jobs properly, or simply systemic overwhelm, I’m spending additional time on something that should be done already. 

Back in September, I had two ER visits in an attempt to break the migraine I still have.

I finally got the bill in November and contacted them to apply for Charity Care.  My income is too high to be Medicaid-eligible(my Medicare covers 80%), but still low enough that usually most or all of the residual costs from the hospital are covered.

I was told to come to the next available scheduled appointment, which was in early December. 

Isn’t it frustrating when you’re ready to move forward, but something’s weighing you down and keeping you in the same spot?

Despite following their instructions, I was sent to the wrong charity care office when I arrived at the hospital(why they have two I have no clue).

That location didn’t have appointments, and there was nobody to ask, so by the time I learned I was at the wrong place, my appointment had been lost and that location helped me file the paperwork.

Shortly before Christmas, I got a callback, telling me that the evaluators needed one more piece of information(proof that my part D was removed from my SSDI check before I got paid each month), which they told me I could get from Social Security

This happened despite the fact that I’d printed out the statement available in my online account and written a letter explaining how the part D charges were covered.

Social security told me to call Medicare, which was also wrong, and I finally was able to make the request to my insurance company in January(after spending more than 30 minutes on hold to talk to SSA, then being put on hold by Medicare then disconnected instead of put through to a person twice in a row, after more than 10 minutes of waiting on hold each time).

That request was neither recorded nor filed, so I had to renew the request when I called in February to ask why I hadn’t received the information yet, and I still have not received this statement.

Al and I also got our application for LIHEAP in later than intended, and are still waiting for acknowledgment and coverage.

turqouise blue banner ad. The Thriving While Disabled logo is to the left, with a picture of Alison smiling on the far right. The text in between reads "I can help you protect your benefits while you work" and in smaller text "Learn about Navigating social welfare benefits coaching"

It took until late January for them to get to our application(they are processed by date received), and then we were sent two requests for information that we’d already given them(one for me, and one for Al).

These slightly different documents were filled in by two different people(different handwriting and pen colors), with no signatures and no contact information in regards to who was managing the case.

sometimes it feels like your information just dropped into a deep hole, never to be found

When I finally got through to somebody, I was given an email address to send the information to, and we’re still waiting for a response.

Al is on Medicaid, but this year the paperwork they sent him for his renewal didn’t get processed correctly.

He has no job, and therefore no income. 

They kept requesting his W2 forms from his (nonexistent) job, and he kept explaining that he didn’t have a job, and so had no W2 to send. 

Being organized is a necessity, not an option

Because of these fights, I’m also regretting the times I’ve been less organized about things.

I misplaced or threw out some of the initial hospital billing documentation because I thought it was resolved after my initial charity care appointment, so now I don’t have the direct phone number.

I can’t easily check if they kept or destroyed all that carefully gathered paperwork. I also am not sure what I did with the card of the man who actually helped me turn it all in.

He’d been so sure that it would be accepted and felt like we’d done a really thorough job. I remember him calling me, apologetically telling me that they needed more information.

With LiHEAP, I need to call them back again soon, because I think they should have processed it all before now.

Instead of being able to mentally check done when I take care of my responsibility, I need to be ready to call again, and again, and again.

However you manage your information – keeping it organized will help you minimize your stress!

Some of these specific challenges are new for me(the hospital I usually go to has never given me this many problems, and usually I turn my LIHEAP application in early in October so it’s processed within the month), but now I am reminded of the pieces that I didn’t do. 

I didn’t keep a running tally of the dates, times and specific employees I talked to.

I didn’t keep copies of my application, just in case it vanished.

I never before had to send in additional proof of low income because the application process took so many months that they needed it updated.

I’m also annoyed that these things are necessary. 

Because I did everything that I could to not have these problems. 

Because we don’t need additional stress. 

Because life is hard enough anyway.

Targeting those with the most to lose

The programs giving us trouble are the ones designed to help the poorest members of our country. 

These are programs for the people whose only insurance option is a program designed to cover the neediest populations, have just spent time in a hospital, or are low enough income to need help with keeping their homes warm.

It shouldn’t take 8 phone calls to get an itemized bill.

It shouldn’t take over 4 months to get heat assistance.

When Medicaid screws up, it shouldn’t take three months to get it fixed(going without medical care and medication during that time).

Don’t let these stresses pull you down- you deserve the opportunity to resurface

It makes me angry, especially knowing that Al and I are in a somewhat privileged position with all of this. 

We don’t have a crazy number of medical bills or doctors to see.

We have more than average, I’m sure, but we have diagnoses, most of his checkups are every 6-12 months, not monthly or weekly, and I rarely need to go to the hospital or have big-ticket medical expenses.

I can pay our heat and electric bill, and we do have support from both of our families – Al’s parents would be thrilled if we had dinner at their place every night for a while, my mom’s happy to help out with some of our food expenses, help us with car repairs, and things like that. 

We’re not one emergency away from being homeless. 

I know a lot of others may be. The people before or after us in line for LIHEAP may be.

Other patients at that hospital may be choosing between rent and food because their debt hasn’t gone away yet – other people who Medicaid messed up might not be able to wait for procedures or might need their medication to stay alive. 

That these systems are this broken is just frustrating and upsetting to me, but for others, this is a life-or-death issue, one with grave and potentially life-long consequences.

Staying on top of it all

Due to these issues, I have had to do extra work just for the chance to have something work out the way it’s supposed to.

I have to remind Al every week or two to call Medicaid back and check on his case.

I have to call the insurance company back again just to see if they did the work they told me they were going to do. 

I have to call LIHEAP again to make sure that they got the email Al sent, since I still haven’t gotten my letter about coverage, and I have another bill from the electrical company. 

Sometimes you just need to keep going, even with all kinds of distractions whirring around your head.

I don’t have residual debt on the account because I prioritize my heat and electricity and have the bill auto deducted from my bank account early in the month. 

I’m not an emergency case, but I’m still eligible, and that extra expense means that my credit card debt is higher, that I have more stress, that I don’t have the money I should have to spend on myself, on Al, on our kitties.

If I hadn’t been eligible, I wouldn’t have bothered applying. I just want what I’m supposed to get, not more, not less.

Doing my best no matter what

The fact of the matter is that these failures by these organizations don’t hurt them, but it does hurt me, and it hurts Al. 

We are the ones who suffer because other people couldn’t be bothered to do their jobs correctly.

It’s up to us to make sure that all the i’s are dotted and all of the t’s are crossed, even though we did nothing wrong, even though it’s not our fault. 

It’s up to us to fix it because we are the ones affected and we’re the ones who really care.  

Unfortunately, the only solution is to keep trying and not give up.

That’s what I’m doing. Every week or two, Al checks back in with Medicaid.

Every time the insurance company fails to meet a stated deadline for mailing me the information, I call back again and ask them for an update.

No matter how long the climb may seem, eventually, you will reach the top!

I called LIHEAP in January, and again near the end of the month when we got the paperwork, and it looks like I need to call them again because I should have gotten a notification by now.

Am I frustrated by this? Absolutely.

Do I feel like it’s a waste of my time? You bet.

Am I going to keep asking? No doubt about it.

I know what I need, I know my rights, and I am going to persist. That LIHEAP support is around $100/month, so the credit I’m given should cover the rest of the season, and likely the summer into fall.

It also should cover part of my electrical bill this summer. No matter how long it takes for them to process it, we’re still eligible for that money.

All the fighting for Charity care? That’s another $300 that I shouldn’t need to pay. So while I am angry that it’s taking this long, I know that eventually that bill will be gone, and I won’t have had to pay it.

These phone calls are an investment – saving myself the money I am entitled to, and removing debt I can’t afford to have.

turqouise blue banner ad. The Thriving While Disabled logo is to the left, with a picture of Alison smiling on the far right. The text in between reads "I can help you protect your benefits while you work" and in smaller text "Learn about Navigating social welfare benefits coaching"

In Al’s case, once Medicaid recognizes his coverage should never have been suspended, the bills he’s currently facing will be gone, and he will be able to pick up the medications he needs and make up for the doctor’s appointments he was forced to miss.

Of course it would have been easier if the work had simply been done correctly the first time.

Not only would it have saved me time, but each of those businesses wouldn’t have needed to answer additional calls from Al or I, send additional mailings, write additional documents, etc.

However, that’s not something I can control. What I can control, all that I can control is what I do about it.

And I will not back down, will not give up. I’m going to keep pushing back, keep fighting their errors until the problems are resolved, and Al and I have the supports we are eligible for.

I encourage you to do the same.

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  1. How terribly frustrating! Thankfully you seem to be on top of it all and are determined to get everything taken care of. I hope you get everything resolved sooner than later.

    1. Thank you Cynthia!
      I am making a bit of progress – the Affordable Housing Commission has confirmed that I’m approved, so I shouldn’t need to worry about my gas bill until sometime in the late fall(or maybe later if I’m lucky).
      Unfortunately, there’s no progress on the Wellcare front. They apparently re-sent the information to me on March 6th, since I still haven’t received it. I’m hoping that something will appear, but I’m pushing for it to be faxed to me – so far that’s been unsuccessful.
      I’m hoping for the best, but will keep going no matter what!

  2. It always amazes me the many problems that exist with welfare, no matter what country you live in! I am so sorry to hear of all the frustrations and obstacles you have encountered in getting the help that you need and are entitled to. Keeping my fingers crossed that it all gets sorted for you soon. Rhiann x

    1. Rhiann,
      Thanks so much!
      I did finally get the information from Wellcare. It was the public shaming that seemed to do it. After I commented on their incompetence on twitter, they were magically able to fax the information to me.
      Now, I am waiting for a callback from the hospital’s charity care program, having left a message on Thursday and another today. I plan to call the supervisor later today if I don’t get a call back before that.
      Hope you are doing OK with all the COVID-19 stuff going on!

  3. I’m so sorry you are both having such a rough time getting what you are entitled to. I can feel your frustration I do hope all your effort pays off really soon. Take care!

    1. Thank you for the empathy!! I think things have kicked in with LIHEAP, finally, though I haven’t recieved notification from them. I didn’t get a gas bill for March 🙂
      I got my paperwork (via fax), but no response from the hospital’s financial aide department (at this point, I may be paused on this due to COVID19)
      The Medicaid mess is still unresolved, and we are concerned that there may not be any people available to fix it now, thanks to COVID19.
      Al was also supposed to start a new job last week, but that is also on hold due to COVID19.
      The good news is that this means we are in a relatively safe and stable place. We are both safely at home and have minimal exposure. Al has run out to do some shopping and such, but that’s about it in terms of exposure. So we are reasonably safe and doing as well as we can be in the midst of this pandemic!

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