Subject line: “Tomorrow is a big deal but President Trump doesn’t want you to know about it.” Well, that’s one way to stand out in my email inbox. The sender is my state’s senior U.S. Senator, Jeanne Shaheen, and the message is from her Senate account, not a campaign address.

“…November 1st, through December 15th, you have the opportunity to sign up for a new health insurance plan or change your existing plan through the Affordable Care Act, also known as Obamacare. Despite the many attempts by President Trump and Republican leadership to repeal Obamacare, it remains the law of the land. As you consider your healthcare options, it’s important to note that there have been many changes to available plans. Instead of just signing up for the same plan for 2018, I encourage you to shop around …”

Stop. Just stop. But no, there’s more:

“The Trump administration has been trying to keep Granite Staters in the dark about this important signup period by slashing open enrollment advertising by 90 percent, cutting the open enrollment period in half and defunding support staff that assist with signing up. So, friends, it’s up to each of us to get the word out to family members and friends that the enrollment period is about to get underway.” 

Consider yourself informed. You’re welcome.

As I have expressed at possibly tiresome length since last year’s campaign, I hold no brief for President Trump. Of all the things for me to hold against him, though, trying to keep me in the dark about the administrative details of Obamacare isn’t one of them.

There are things about Obamacare that bother me a lot more than open enrollment advertising being “slashed” by 90 percent – its effect on conscience rights, for one thing; its cost, for another.

I won’t be signing up for insurance on the “Affordable” Care Act’s exchange today, or tomorrow, or anytime before December 15. It isn’t affordable. Instead, I’ll be checking with my healthshare plan, Solidarity HealthShare, to see if there’s going to be any adjustment in my monthly fee, which I can afford.

I’m supposed to be upset about how Trump’s handling Obamacare?

My state’s senior Senator is right about this much: Obamacare is still the law of the land. It will remain so, I fear, until federal legislators like her are forced to go on their home states’ insurance exchanges to find health care coverage. I can visualize my senator getting a breezy campaign-style email assuring her “you have the opportunity to sign up!”

She might even be as enthusiastic as I am.

Ellen Kolb is a writer and pro-life activist living in New Hampshire. She blogs at ellenkolb.com and Leaven for the Loaf. 

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by Steve and Timothy Imholt (mainly Steve, Tim was too angry, as he is an adult with autism and has an autistic son he pays out of pocket to cover.)

Do you remember the debate about why Obamacare was going to be so very good or so very evil (depending on who was hogging the microphone)? Regardless of where you fell on the scale from progressive to arch conservative, one area which had very little argument was over what healthcare should cover regarding children. Yes, there was argument about the role of government, about government over reach, about fiscal consequences, but about kids?

Nope, I don’t remember it.

I bet you don’t either.

I can remember the discussions about orphan drugs. I remember comments from both sides about catastrophic coverage. Even discussions about pre-existing conditions. These were things that most people thought the ACA would/should (depending on party affiliation) cover. Even the insurance companies and the Republicans in a last ditch effort to stop the ACA talked about other legislation, in place of the ACA, that would cover pre-existing and catastrophic situations.

But what they didn’t do was talk about situations that were fixable when the fix was expensive. Talk about donut holes. There is donut hole in coverage the size of the Holland Tunnel if you work for most companies. You see, the way things are today, some kinds of illnesses actually ARE covered by the ACA marketplace and public aid, but NOT through employer plans precisely because they are so expensive, and the employers had good lobbyists to get wording in there for an exemption for employer based plans.

Still others aren’t covered by the ACA market place OR the employer because get this… they are too expensive. It’s like finding a Ho Chi Minh tunnel at the bottom of a Florida sized sinkhole. You take the tunnel because you have to.

Is there a poster child for this hole? Autism.

You see, when you catch autism early it is treatable. But the treatment needs to be aggressive. And even better, its effects can be truly managed and even called cured. But the current costs are somewhere higher than $30,000 and in some cases even $50,000 per year for several years. Most employers would rather not have to deal with that kind of cost. And (please use a Gomer Pyle voice when reading this), Surprise, Surprise, Surpirse, state and federal laws say they don’t have to cover it.

Think about this. The employed person has to pay out of pocket to get his kids treated. That same person has to pay taxes that, in turn, pay for subsidized coverage for other people, some of whom don’t have a job, so that their kids can get this treatment because the ACA says that they can. So one guy gets to fork out the money twice, or if he can’t afford for his kids to get these treatments out of his own pocket has real problems.

That is assuming the guy who has a job can find a way to afford it. How many people have that kind of money leftover from the rest of their budget in their after tax salary? Especially with all the new tax rates, hikes in grocery store prices, and stagnant wages in the middle class.

It is a nutty situation, but that is just one prime example. We are SURE there are others. We will be on the lookout. Just follow bankruptcy filings and some will likely be found.

The ACA act itself provides a partial loophole as well. Turns out the Fed doesn’t always cover it because it’s a congenital condition. Those plans which do cover it are a lot more expensive. Currently, the only real option left for a family with an average income is for the kid to get put on public aid. On public aid, the kid can get covered. Except that like a Ho Chi Minh tunnel, the hole can collapse at any moment.

Now for those readers who don’t have to deal with this every day, getting on public aid is NOT like switching cable companies. You need to get qualified again, and again, and again. It takes a lot of effort by parents to pull it off. And each time they have to requalify, treatment gets impacted either because docs won’t accept it, or they can’t actually deliver until approved (again and again and again).

Remember that comment about catching it early, and being aggressive? Let’s be blunt. Being aggressive is not compatible with government paperwork.

So, as a country, we end up actually causing kids to not get the treatment they need, exactly when it would do the most good. All because companies didn’t want to have this really large cost, and the Feds on ACA didn’t want the premiums to go up even more than they are going up next year.

How did it get this way? From my perspective, it was because from the progressive standpoint, it had to be covered, so sticking it to the states was a good idea. (Actually for some of the progressives, anything that eventually will lead to a single payer system is a good thing, no matter how many kids get trampled in the meantime). But the conservatives aren’t off the hook either. Again, from my standpoint, allowing companies to exclude this kind of thing, is the direct equivalent of being Pontius Pilate, washing their hands. Why? Because for conservatives, anything that shows how bad the ACA is must be good, no matter how many kids are trampled.

From my perspective, political autism has eradicated public oughtism.

The saddest part of all? It’s not those kids knowing that they won’t be treated today. You see, none of them will notice it today because they are too young, and they really do have issues. And it probably won’t be those kids when they are grown, because at the speed they won’t get treatment, they will have challenges, at a much higher rate than they should. And the annual cost of that will be paid by everyone, just as the ineffectual treatment they will get because of a defective public aid system.

Yet keep sending these yahoos back to Washington, again, and again. Perhaps it’s the public who is more autistic than we would ever want to admit.

By Timothy & Jean Imholt

 

We are autism parents. Autism itself was the subject of television commercials until our son, Emmit, was diagnosed at two years old. The mere mention of the word brought on fear, doubt, distress, anger, guilt, and denial all at the same time! In retrospect this was understandable given that we didn’t have an inkling what that meant at the time. Fast forward to today, when Emmit is four and a half, we are much more educated on the subject and live every single day of our lives with the little dude who forced us to learn about it, and we no longer consider it a two headed, fire breathing monster.

The diagnosis came about because of our crackerjack pediatrician. At his eighteen month checkup he asked us a series of questions about Emmit’s day to day life. The little dude had very few words, he had very poor eye contact and didn’t appear to really enjoy social interaction with his peers; in fact, interaction with other kids seemed to stress him out.

Our son’s pediatrician referred us to a neurological consultant, and ultimately a neuropsychologist at Children’s Hospital in Boston, Massachusetts diagnosed him with the autism spectrum disorder. Because of his age at the time of diagnosis it was almost impossible to tell exactly where on the spectrum he fell. If you are not familiar with the spectrum, never fear, you are not alone. It is a wide range of diagnosis (we don’t care for disorders as a descriptor). The range goes from mild to severe. It was obvious he wasn’t severe, but realizing that he was on the spectrum at all was a giant leap forward for us in our path to understanding how to help him.

The diagnosis was just the beginning. If you are ever faced with this situation you will learn that a whole lot of stuff comes immediately following learning that little tidbit of information. Then the bombardment really begins. There are a ton of therapies that he needed to be in starting right away. These included speech therapy, applied behavioral analysis (ABA) therapy, and maybe even occupational therapy (OT) for his sensory processing integration challenges.

Now, Tim works full time and luckily we are in a position where Jean can be a full time mom. Her head was definitely spinning, his head was all fuzzy from the entire thing. She spent a week grieving, then by the weekend, rolled up her sleeves and got to work. There was a collective vow that we would get Emmit all of the resources we could to get him ready for the challenges that life throws at all of us. Around this time we also found out that Tim was diagnosed with virtually the same spectrum disorder as a toddler but was never told for a variety of reasons, just to add fuel to our fire. It was the double whammy of a lifetime. That is an entirely different subject and a topic for another day.

Back to Emmit. Shortly after his diagnosis he started receiving many services through a fantastic State funded early intervention program. This program provides speech therapy using floor time, music therapy (which helps far more than you would think at first blush), OT, and once a week he had a social play date, something that is vital for kids (and adults actually, but the nomenclature should change) on the spectrum. Jean immediately sought out other play groups in the neighborhood and through the local church. We also put him in a daycare a couple of days a week. If it sounds like a busy schedule and yes it was. However it is crucial to expose kids like Emmit to as many socially interactive groups as possible and it has to be done very early on.

As Emmit turned 3 all of the State funded therapies came to an end. That is because among other reasons, he was then eligible to go to a peer model, integrated preschool. Unfortunately, or fortunately depending on your perspective, you have to go through a long, drawn out process of getting what is referred to as an individualized education plan or IEP. This is basically a contract, or arrangement for getting Emmit into a preschool program, and what kind of special coursework/treatment he will get while he is there.

As he began attending school we started to see Emmit vocalizing more, requesting his needs with words, and playing with his siblings more and more. On top of all of that success, he learned other new skills, such as dressing himself, and potty training just to name a few. He loved and thrived under the routine of attending school, and his favorite part, riding the school bus.

Earlier this year Emmit turned four. By this point he was able to request what he wanted on his birthday cake! He went with Minions from Despicable Me (a great movie for kids and adults). We got him the cake he wanted and a fantastic party with his classmates in a gymnastics studio near where we live.

Over time, like most kids, he has been invited to a large number of birthday parties. For a child with autism, these can be nightmares. Emmit has thrived so much that he now loves these types of things. There was one just this past weekend where Tim and Jean were both floored when Emmit took the time to say hello to his friends by their name. On one occasion he even struck up a conversation.

“Jimmy, do you like to swim?” asked Emmit.

Whoa wait a minute! Was that Emmit? Yes, yes, it was. Emmit got his answer, which made him smile.

“Yes.” said Jimmy.

Four year old Emmit wasn’t done.

“I went to the swim class today.  I had four floaties,” said Emmit.

Just as a side note, just before the party Emmit had a swim class and had worn a belt with four layers of flotation foam. Jean was almost in tears when she heard this, because he had made so much progress in such a short period of time.

Earlier in the year, we added ABA therapy back into the mix (the state funded version had ended by this point). This was in addition to the speech therapy that he receives at school as per his IEP. We did this privately because he was found ineligible to receive ABA through school because he is not “severe enough” despite the recommendations of his doctors. ABA is known to be amazingly effective for children on the spectrum. It is specifically targeted to modify undesired behaviors through positive motivation and rewards.

Here was the kicker.  With all of the new insurance laws in place (the Affordable Care Act), we learned that this invaluable service for Emmit would not be covered by our insurance in any way. Two doors were shut in our face. First through the school, the second through insurance. Just slam, right on the nose. This was really surprising, especially the insurance coverage part, considering how much we have heard about improvements in this area thanks to new laws. We also found out that prior to the ACA many insurance policies (including ours) covered this type of therapy.

We were well aware that time was of the essence. If we were going to give Emmit this type of therapy, the earlier we start, the better the outcome. We decided right then and there to self-fund his treatment 100% out of pocket. It is shockingly expensive, but the hope was that Emmit would make great progress quickly, so this wouldn’t be a years-long effort. We are seeing the fruits of his hard work with the ABA therapists every single day. He has learned to share, take turns, a ton of functional language (my tummy hurts, etc), he follows multi-step instructions, he is tolerating undesired activities (to a four year old this is a lot of stuff), he is becoming more flexible, but most importantly, he is now confident in himself (enough to approach someone outside of family and ask questions.)

The term autism is no longer scary to us. To be honest, the term autism parent is not something we really used before today. Part of us has been frightened all along, like by saying it out loud, it would become etched in granite. Now with our newly instilled hope, we are proud to have put all of this in writing. In fact, autism parents should be proud of themselves and should be celebrated. We recently read (more like devoured) a book entitled “Ten Things Every Child with Autism Wishes You Knew” which is very much a paradigm shifting book. One of the many things from that book we found of high value is how the term “autistic child” can conjure up the negative connotation and put a severe judgment and limit to the child’s abilities in our society (using “autistic” in front of child as an adjective).  We as a society needs to work towards eliminating ignorance on the subject of autism.  However in this case, we are of the opinion that “autism parent” conjures up something much different than the previous perception – perseverance, patience, super-mom/dad, expert and advocate.

This subject is one that more people should be aware of, if for no other reason than some of the people that fall on the spectrum are some of the best and brightest America has to offer, merely socially awkward. That, however, does not mean they are to be ignored as is all too often the case. We should help as many of them communicate with everyone else, because quite frankly, given the state of affairs we find ourselves in as a nation perhaps “normal” is not something we should strive for. We need to strive for better.

 

 

Jean is a first generation Korean immigrant, and a graduate of Virginia Tech with a Masters in Chemical Engineering, and a former Program Manager in the Defense Industry. Tim is an army veteran, Physicist and author of several books including The Forest of Assassins available on Amazon.com in print and kindle versions, with audiobook version coming soon.