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Tag Archives: ACA

We were the parents picking and choosing what health services we could afford for our daughter

2 May

Jimmy Kimmel’s monologue about his son’s birth and discovery of a heart defect is making the rounds. I won’t lie – I’ve never wanted to hug a celebrity more than I did watching his video. I’m so glad everything is going well so far, and praying it will continue to go well.

Near the end of the monologue, after awesomely thanking all the hospital staff, family, friends, Jimmy goes on to say how thanks to the ACA, his son won’t be rejected from insurance because of his pre-existing heart condition. He also says “No parent should ever have to decide if they can afford to save their child’s life.”

I totally agree.

But I agree because a decade ago, we were the parents picking and choosing what we could do for our daughter.

Ours is a tale of the self-employed. Back then, my husband was a consultant, and we were living a decent life. We had three small but amazingly healthy kids. We only saw doctors once a year for check ups. We decided to have that fourth and final child. She too was born healthy, though the pregnancy was the first clue that our insurance was not-so-great – it didn’t cover my “pre-existing maternal condition”, so six months into the pregnancy, we discovered we’d have to pay out of pocket for that pre-natal care the insurance rep told me was “not medically necessary”.

Luckily, my ob’s office had a non-insured rate to bill us at. It was still a chunk of change.

For this, we paid at one point, $700 a month out of pocket.

We still didn’t understand just how bad our insurance was. Not until Maura was 15 months old and our pediatrician sent us for a blood test to check her genes, make sure they were all there. They were, and for that knowledge, we got a bill for $1200 – our insurance, it seemed, didn’t cover lab work.

In this foggy time of discovering Maura had developmental delays, we were left with a choice parents should not have to make – “Do we test? If so, who do we go to, because we can only afford so much testing….” We signed up for the free Early Intervention through the school district in the meantime.

I called the now non-existent Behavioral and Developmental Clinic at the prestigious university hospital. I thought our money would be best spent there, since no one was quite sure where to start with Maura. They claimed they would discuss her case with a group of doctors, and we’d be seen by the correct specialist.

“What’s your biggest concern?” the intake person asked me over the phone.

“She’s twenty months old and not walking.” I stated, then mentioned also the fine motor skill delays and speech delays, to boost our case.

They heard “Not talking, almost two” and sent us to a child psychologist, who did a minor screening, then announced happily to me that Maura was not autistic.

“Well, yeah…” I responded – because the one area Maura shined in was social skills, her EI therapists weren’t worried about autism. “But can you tell me what she does have?”

“Oh, I don’t know, you’ll have to see someone else.”

I left, furious, after paying $250 out of pocket because my insurance didn’t cover “mental health issues”.

One nurse did tell me I should check with the state’s Medicaid program for children with any sort of special needs, that we’d definitely get on it, and that would help with the costs. So I called them up.

“What’s your daughter’s diagnosis?” the representative asked.

“She has developmental delays.” I stated.

“Does she have any other diagnosis?”

“No.”

“I’m sorry, but we don’t cover developmental delays. Maybe if you can get a diagnosis, you’ll be able to get on the program.” the rep said nicely.

“Yes, but we need this program so we can afford testing so we can get a diagnosis.” I sighed.

Still, Maura remained healthy and happy. She grew normally. We paid out of pocket for stuff. Josh changed job roles, going from a consultant, to a partner in a consultant group, that was small, but did provide insurance.

So we went to the neurologist. Who found nothing. We went to the geneticist, who found nothing. We went to the orthopedic guy to get Maura much needed ankle braces, so she could walk straight. Those braces cost $1700. Insurance covered the first thousand, the rest was up to us, and oh, insurance only covers the cost of these sorts of supportive braces once a year – so if your child has a growth spurt two months after receiving the braces, the next pair is on you. Except orthopedics know this so have ways of making that one brace last a calendar year.

At one point, we bought a house. A fixer-upper with 30 year old carpet that tore if you stubbed your toe on it. We ripped up all the carpeting….and then received $3000 worth of medical bills for Maura in the mail. So we paid the medical bills and I threw area rugs over subflooring until we could afford replace what we tore up. Because that’s just how life worked at that point. We paid the medical bills and made everything else work.

And then, Josh applied for a job in corporate America. And I read the benefits package. And I may have grabbed him by the shirtfront and yelled “OMG DID YOU SEE THE INSURANCE PLAN? YOU HAVE TO GET THIS JOB!!!”

And he got the job. And I would walk into doctors offices going “Ask me how much my co-pay is? NONE! I have none!”

It’s amazing how much less stressful your life is when you don’t have to go “Gee, I know she needs to see both specialists, but we can only afford one, so which will it be?” But I also will never forget those times, because they sucked. There  you are, learning that there may be something wrong with your child, but you can’t afford the cost of finding out what that wrong thing might be?

No parent should have to go through that.

But wait – in writing this, I realize I need to back up, to a time before Maura even.

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Me and Miriam – April 2001

We had moved from one state to another. And in doing so, our insurance through one state-based firm was supposed to transfer to the other state-based firm. Yet it didn’t. There was a mix up in the paperwork. A six month mix-up that took endless phone calls and paperwork being sent back and forth and lost in the process, and much swearing.

In the midst of all that, we went to my mom’s house that Thanksgiving. Long story shorter, Miriam, then a tiny toddler who was sixteen months old and wore 6-9 month sized clothes, climbed up the stairs at my mom’s. Josh, being a good father, followed her up the stairs, then closed and locked the baby gate when they got to the top. Sean said “Hey Dad, look!”

Josh looked.

Meanwhile, downstairs, I heard a soft thunk. “That’s odd.” I said, as my mother and I both got up from our seats in the living room to go look.

Josh had also heard the thunk. He thought Miriam went into my sister’s room and knocked over something. Then he heard me say “Miriam! Are you okay?”

I was down in the front all, my 16 month old laying on the floor looking dazed. Josh was upstairs trying to unlock the damned baby gate. I picked up Miriam, and was spooked that my child who yelled about everything was being eerily quiet. My stepdad and grandma were now by me. Josh decided to hop the baby gate at the top of the stairs. Just as my stepdad was saying “Here, give her to me, let me see”, Josh came rushing down the stairs.

“She was up there!” he said.

We all looked up, 10-12 feet, and what happened hit us.

Somehow, the tiny 16 month old slipped through a five inch gap in the railing in the upstairs hallway and fell to the first floor. My brain was racing with the thought that I should have never picked her up off the floor. If she had damaged herself, I just made it worse by picking her up.

“What do you want to do?” someone asked me.

“I want to take her to a doctor and have them tell me my baby’s okay.” I replied as I clutched my still not crying toddler.

“Let’s go.” Josh said.

“OMG!” my mom blurted out in horror.  “You don’t have insurance!” Ironically, we had been telling her the tale of trying to get insurance earlier.

“I don’t care, we’ll figure it out later.” Josh said.

$6000 later, we were told that Miriam was, in fact, fine. Miraculously, we left the hospital six hours after arriving, with only a bump on her forehead to show she had fallen. If Miriam had been injured, it would have been a much higher bill. If she had been injured, would we have had to choose what we fixed? We were uninsured, who knows what would have happened if she’d had a broken leg, or head injury, needed surgery or a week’s stay in the hospital. Actually, bankruptcy probably would have happened, to be honest. Because we were racking up $1000 per hour we were in the ER.

Luckily, there was nothing wrong with our tiny toddler. Luckily, the bill was *only* $6000.

My mom ended up filing a claim with homeowner’s insurance, and the man – who had a toddler of his own and a staircase design similar to my mom’s – ruled it a freak accident and they’d cover the entire bill.

Thank God, because honestly? We didn’t have $6000 for medical bills.

We’ve been there, on both sides of the coin. As parents of a healthy child who’s had a freak accident, and as parents of a child who has special needs. We’ve had to choose what to do medically for our children, knowing we would have to pay for it ourselves, or go into debt for it. We have had to choose, do we take her to a neurologist or a developmental pediatrician, because we couldn’t swing both. We have sat with a pile of medical bills, choosing to defer student loans yet again, because student loans would still be there, but we’d want to see the doctor again and we couldn’t be seen if we had an outstanding account.

So as you wipe tears after watching Jimmy Kimmel plead for health care for human beings, especially the tiny ones, remember that this is something so many of us deal with on a day to day basis. There are real live people behind these stories. And these stories are common. Much too common.

I know, because I’ve lived it.

“No parent should ever have to decide if they can afford to save their child’s life.”

 

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Maura, Easter 2010? She was having seizures b/c of an ear infection. Luckily, this was all covered by insurance, and she wasn’t excluded from insurance because of her pre-existing condition known as epilepsy.

 

 

 

 

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It’s not just about DeVos

7 Feb

Betsy DeVos – now famous for, well, grizzly attacks on public schools – has become Education Secretary. Barely. With no education background, she is now in charge of our public school system, and all the laws about education. Some of which she finds “confusing”.

Let me repeat – the woman in charge of upholding education laws doesn’t understand education laws.

And upon her confirmation, parents of kids in special ed collectively cursed, shook their heads, and rolled up their sleeves. See, we’re used to having to fight for our kids.

I’ve been watching the new administration before it was a new administration. Trump has been quoted saying he’d like to get rid of the Dept. of Education altogether. So wanting DeVos as Education Secretary isn’t that huge of a surprise. Nor is the almost instant news of abolishing the Dept of Education that headlined today after the confirmation.

But it’s more than education that’s caught my eye.

First, we have a nominee for Attorney General who also doesn’t support IDEA –

In May 2000, Sessions took to the senate floor to make a lengthy speech on the Individuals with Disabilities Education Act, arguing that federal protections for students with disabilities was a reason U.S. public schools were failing. – HuffPo

Meanwhile, we have a nominee for SCOTUS who sides with schools over students when it comes to IDEA –

In a second disability rights case, an impartial hearing officer, an administrative law judge, and a federal district court judge all agreed that a young autistic boy, Luke, needed placement in a residential school program due to his total lack of progress in “generalizing” skills — applying skills learned at school to other environments. Judge Gorsuch wrote the opinion reversing. He found that because Luke was making “some progress” toward his education goals in the public school — even though it was undisputed there was no progress outside of school –the school district had met its obligations under the Individuals with Disabilities Education Act (IDEA). But Congress had made it clear that the IDEA should help students make progress toward independent living. Generally, not just in school. The narrow and outdated standard used by Judge Gorsuch is now under review in the U.S. Supreme Court. –        (source:ACLU)

 

And then you add up things like the ACA and all it’s handy little bits like insurances can’t deny you if you have pre-existing conditions, attempts to slash Medicaid, etc…

…and you begin to fashion a hat out of tinfoil. Because it all starts feeling like a giant conspiracy against people with disabilities.

Seriously – if we can’t get educations or health care for people of all ages with disabilities, then what? We can’t move to Canada – they don’t take people with disabilities, despite how warm and fuzzy Justin Trudeau appears. Besides, aren’t we, as Americans, supposed to be better than that? Isn’t America the place where everyone gets a chance to succeed in life? Or is that now only limited to the able-bodied?

No, this isn’t just about Betsy DeVos and her lack of understanding about special education laws. This is more. This is about an administration who not only seems to not care about disability rights, they seem almost determined to make things harder for people with disabilities. What’s next? Repealing the Americans with Disabilities Act because it costs too much to put a wheelchair ramp in a public building and it’s “bad for business”?

Again, maybe I’m just fashioning myself a tinfoil hat. But these days, it seems anything goes. We now have a Education Secretary who thinks there should be guns at schools in case of grizzly attacks.

No one saw that coming, not even the bears.

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