Our Nightmare with the NYS Health Exchanges

I would like to start out by stating that I am very grateful that the Affordable Care Act (ACA) aka Obamacare was passed and that the Supreme Court upheld it as constitutional. It has helped millions of Americans obtain health insurance coverage, including some dear friends of mine. The part about insurance companies no longer being allowed to deny coverage to people with pre-existing conditions alone was a huge deal.

However, today I would like to rant about how broken the bureaucracy is as far as the reality of trying to obtain health coverage through the state exchanges as a family with financial problems.

Westminster Council House tied up in red tape 

The Nightmare Begins

On June 18, Tom lost his job, where he’d been a loyal and (previously) valued employee for almost 10 years. Technically, his health insurance coverage didn’t run out until June 30. Practically, since it was a high deductible plan where the company was covering our deductible with a benefits account card, we were no longer covered for anything. The benefits card was canceled that day, before we’d even been billed for appointments we’d had within the previous 30 days. (That was a headache to get the paperwork for them to cover those costs.)  I had to cancel all future appointments with my psychiatrist, put off a followup for the capsule endoscopy I’d just had, and figure out what the heck to do about all of my medications. Some of them are really expensive! As far as the meds were concerned, my psychiatrist agreed to keep my prescriptions current even if I couldn’t come see him in his office. We went online to apply for the Effexor XR discount card so that we could afford for me to take it. The rest were affordable generics, so while it was still a slight burden to have to pay out of pocket for them, it wasn’t impossible. MENTAL ILLNESS SHOULD BE MORE FUN

We Thought Help Was on Its Way

Although he’d started the ball rolling earlier, Tom first submitted our actual paperwork to New York State for our health coverage on July 16. He’d had to get his letter of termination and everything in order, which was scanned in and uploaded to the state. They needed a copy of my 1040 Schedule C as proof of income, so I printed out the two pages, scanned them in, and Tom uploaded. They didn’t see the second page, so I think he uploaded it a second time to ensure they could see it on their end. July 16, I posted this on Facebook:

Family update: NYS has received all of our income verification stuff and other paperwork. If we don’t hear from them tomorrow re: health coverage, we’re supposed to call on Monday. I’m anticipating our approval for Medicaid for the two of us and Child Health Plus for TJ.

Time passed. Tom called them several times to check on our status. He was told that our application was still being processed. Still more time passed, and we still hadn’t heard back with a decision.

134/365 - September 15, 2008I nagged him and nagged him to keep checking back with them. I’m not sure how many times he called, because we couldn’t go back too far in his phone logs.


On August 31, I ended up breaking down and crying because Capital Imaging called to schedule my followup mammogram for my upcoming September appointment with the breast surgeon. I told them I couldn’t do it right now because I was uninsured. I begged Tom to call the state again. As I then ranted on Facebook:

We have literally sent these people my Schedule C twice already. TWICE. Apparently the “top got cut off” the second time, and no one bothered to notify us that this is why they hadn’t contacted us about our pending medical coverage. It’s been TWO MONTHS. And we still wouldn’t have known if I hadn’t asked Tom to call due to postponing my mammogram. This will be the third time we’ve [sent them this document].

So out of all of those times that Tom called to check on our status throughout July and August, not a single person bothered to tell him that my Schedule C was missing about a quarter of an inch off the top, which apparently invalidated it as proof of income. It had to be scanned and uploaded AGAIN. On August 31. Something they could have told us on any one of the previous phone calls he’d made. The woman on the phone this time told me they’d expedite our processing since my mammogram made for a medical emergency, and we should have a decision by the end of the week, which would have been September 4. file cabinets

They didn’t call on September 4, of course. And they still hadn’t made a decision when Tom called back the following week. And he spent 15 minutes on the phone with them on September 15.


Fast forward to Friday, September 18. We got a call from the school to pick TJ up because he was sick. In fact, he vomited all day long, unable to keep even liquids down. I asked Tom to call about our health coverage again. This is how I recounted that phone call on Facebook:


Because of the medical emergency TJ poses (he has a fever now, too) the state FINALLY did something. Tom has to call CDPHP tomorrow to get TJ on the exchanges, which will be retroactive to September 1 for him in case we need to bring him to a doctor today. Or maybe his isn’t an exchange, it might be Child Health Plus. Tom and I will have coverage as of October 1. [Note: TJ’s plan would turn out to be Child Health Plus.]

I make too much money to qualify for Medicaid, but not enough to be required to pay out of pocket for the NYS health exchange policy, so between state and federal subsidies, our premiums are covered! So I can call and set up my mammogram, and reschedule my 6-month followup with the surgeon, and basically start seeing doctors again in general.


I was so relieved. After missing my biweekly appointments with my psychiatrist for months, not being able to do my followup appointment for my capsule endoscopy, not being able to schedule my mammogram, and just dealing with my assortment of chronic illnesses (CFS, depression, anxiety, IBS/abdominal pain, arthritis, nerve pain, etc.) without being able to seek medical attention when I really could have used it…I’m pretty sure I cried tears of happiness.

Howard Gospel Choir 10And we did end up needing to take TJ to the doctor, though not that Friday. He managed to keep down half a slice of toast and some fluids at 7:30, just when I was ready to scoop him up and drive him to Ellis for IV fluids. But he got sick again just before midnight Sunday night, and the Mayo Clinic says to take your kid to the doctor if vomiting lasts for longer than 24 hours. Of course, he perked up quite a bit in between calling for the appointment and showing up for it. It was determined to be viral, and we got a form telling us what to do when we finally obtained TJ’s insurance ID number, which Tom had been told would be ready with CDPHP on Saturday but still hadn’t been taken care of on Monday.

The Last Straw

So Tom called back on Wednesday, September 23, after being told that CDPHP still hadn’t received the paperwork from NYS. I managed not to curse in the Facebook rant that ensued, which is easier to share than typing it up again here in different words:

You know how excited I was that we got HEALTH INSURANCE last Friday? Turned out that they COMPLETELY LIED to us. We weren’t covered at all. The confirmation numbers they gave Tom? Bogus. The fact that our premiums would be zero because of state and federal subsidies? LIES. The phone number they gave us to call and set everything up with CDPHP? We called it, they hadn’t gotten the paperwork from NYS yet. BECAUSE IT WAS NEVER SENT. WE WERE NEVER ENROLLED. We took TJ to the pediatrician on Monday with the assurance that he was covered and it was going to be retroactively effective as of September 1. HE WASN’T COVERED.


Tom was on the phone with NYS for over an hour arguing with this guy who was not listening. We’re now enrolled, but with $375 premiums. What happened to our freaking subsidies? How can they DO that to someone who has been unemployed since June? Knowing that I’m chronically ill, waiting for a mammogram for a breast lump, and freaked out rather loudly when I heard what was going on in the conversation. They are going “review the audio” from the call on Friday. *I* want to review the call from Friday. I don’t trust them to report back to us honestly after this! I want them to review TODAY’S call, too. The guy YELLED at Tom. How do I know this? Because after I freaked out (and admittedly shouted, “What do I have to do, threaten to kill myself so they will cover my hospital stay?”) I went upstairs and picked up the second line to listen in. I heard the guy apologize to Tom for shouting at him because he needed TOM to calm down because Tom was getting angry, and clearly “your wife was getting upset because you were getting angry” – and went on to basically belittle my fragile mental state and place all the blame on Tom’s legitimate frustration rather than the outrageous hassle and blatant lies we’ve been told in the last two and a half months of trying to get insurance coverage.

You read that right. The folks at the NYS health exchange hotline blatantly lied to us, telling us that TJ was enrolled retroactively so he could see the doctor and that our health coverage would kick in on October 1. And that we wouldn’t have to pay anything because we qualified for both federal and state subsidies. Hell, we had CONFIRMATION NUMBERS. We took TJ to the doctor on “good faith” that having these confirmation numbers actually meant something. furious

Tom spent 102 minutes on the phone with the guy who told us that none of this was true. At this point, I’m not convinced that this new guy wasn’t lying. Maybe someone didn’t like that the woman from Friday pulled strings she shouldn’t have to actually help us, and they put a note on our file to undo what she did and pretend it never happened.

In any case, I don’t feel it’s unreasonable to insist that they honor the plan they told us we would be enrolled in last Friday. These are government employees. Their calls are recorded for quality assurance. They are not allowed to give people false information about government programs!

I’m just in shock and disbelief that they could do this to anyone. We’re one family, and lucky enough that my husband has been able to be so diligent about calling them to check on things, since they never informed us about any of the holdups. What about single parents who work two jobs and can’t call during normal business hours? It’s absurd.

Congress needs to get its act together. If the GOP had wasted so much time trying to repeal the ACA, they could have been working on ways to fix it. Because clearly it’s NOT perfect. No, what we really need is a single payer system, but until that glorious day arrives, we need to make the system work better for the people who need it most.

Christina Gleason (975 Posts)

That’s me: Christina Gleason. I’m a professional copywriter, editor, and blogger. My company is called Phenomenal Content. (Hire me!) I'm a multiply disabled autistic woman doing my best in this world built for abled people. I’m a geek for grammar, fantasy, and select types of gaming, including Twitch Sings and Plants vs Zombies 2. I hate vegetables. I have an intense phone phobia, so I’ll happily conduct business over email or IM instead.

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