Nicholas Angel: How could this be for the greater good?
Neighbourhood Watch Alliance: [all together] The Greater Good.
Nicholas Angel: Shut it!

Hot Fuzz 2007

Autism is a disorder, really a neurological condition that is typically diagnosed early in childhood that is characterized by huge difficulties in communication and forming relationships with other people. These challenges are due to the way the people with this condition use language and interpret abstract concepts.

My son is a four year old on the autism spectrum. He sits in the mild side, and has been in treatment for a while to treat his various developmental struggles. He is far from alone in these struggles. The autism spectrum is a wide range of severities of this disorder but it is said that more than 1 in 100 kids (more like 1 in 88) sits on the spectrum and requires some kind of treatment. These treatments can be shockingly costly.

Many of these treatments have been covered by our insurance company as every therapy he has been in was prescribed by a medical professional. He has been to neurologists, speech therapists, occupational therapists, all kinds of stuff. The co-pays alone would boggle your mind.

Then we come to today. He goes to one of his two regularly weekly scheduled speech therapy appointments that, until this week has been covered. The health care provider puts in an authorization request for treatment before his appointment (as is their normal procedure), and it is denied. That is strange, why now, why not a week ago?

Something strange is afoot at the Circle K you say?

Wait for it, this gets worse.

It turns out that under the Affordable Care Act they, according to the insurance company, they are required to only cover these types of therapies for “restorative reasons.” What is a restorative reason you ask? They can cover more but it is at their discretion. So, what company would do so if they don’t have to? Well certainly not this one.

Put another way if he had been in an accident and lost the ability to speak they would help, otherwise they won’t. Autistic kids are out of luck I guess, at least to go through a qualified private insurance covered speech therapist.

I was angry for a variety of reasons mostly because this is landing on us with no warning.

So, I asked, what is going on? When did this change?

Oh a letter was sent out 3 days ago? On Friday, and today is Tuesday? Nice, I guess I haven’t gotten or read that yet but ok.

I asked the question, what are these kids supposed to do? Have no shot in life? Medical professionals can prescribe a treatment and unless you can afford the $250-$400/week in cost out of pocket your kid is just out of luck?

No, that isn’t the case, the insurance company representative says. I can appeal (which they told me would in all likelihood be denied but I can do it), or I can go to the local school system department of special education.

So let’s review:

  • Covered last week not covered today
  • Costs of my policy go up year over year
  • Out of pocket just increased by at least $1000/month for a procedure prescribed by a medical professional (and that doesn’t include all the increases in copays elsewhere).
  • Coverage is shifting away from treating those with diagnosed disabilities, sort of.
  • Because of his age he might be covered merely by an already overspent public school system according to the insurance company (the school district disagrees).

Put another way the ACA through some convoluted process just shifted what should be a medical procedure onto the school system?

I guess they wanted the federal deficit numbers to look better for the kids they have to cover through the subsidies? Could that be the case? Surely not…No, they would never forget to tell the whole truth right?

Does that seem like how things are supposed to work?

It appears as though we are playing a shell game of which part of the government goes into debt to do the job it was design to do. Also this brings to mind what qualifications the school system has to do therapeutic treatments that should be done by someone trained specifically for this purpose. Or is the Department of Education just working its way into all aspects of our life so that it never gets cut back and only grows?

Whatever the reason is this monstrously large bill that was supposed to bring down costs is certainly having issues proving its worth beyond some kind of procedure requiring a band aid or the most cursory of treatment.

As an interesting PS to this story. I was on twitter venting about this and got pounded by several people from one of the two major political parties. One statement said, basically, I didn’t get it and that it was all for the “greater good.” Another insane defender of all things done by one party said that, essentially, not that long ago no one got anything.

The “no one got anything” statement is interesting because instead of fixing the problem by making sure everyone gets something we are stripping coverage on an obviously pre-existing condition and blaming corporate greed. I am my wits end with the partisan garbage. We no longer care about solving problems in this country merely about assigning blame. We do this while parents have to figure out how to help the very small children that we are supposed to be doing all of this to help. I will find a way to make sure Emmit gets what he needs, but it sure would be nice to be able to keep the coverage I liked, without that price going up yet again or coverage being reduced even further, but I can I can keep my doctor if I pay for it out of pocket while paying the insurance company to do less with more.

I guess we hoped, and we got change.

Tim I. PhD

-Author of the bestselling novel Forest of Assassins

Amazon.com Widgets

Update:  DTG:  “The Greater Good” Boy that argument sounds familiar:

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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.

 

 

 

by Timothy Imholt PhD

This week I will be short and to the point.

There are times when things come out of the blue and make you question everything you think you know about yourself. It sometimes takes a while to realize that you aren’t different, just your understanding of who you are has changed.

About two years ago we were having one of our kids tested for something (he is fine no worries). Around that same time I was talking with my mother who told me I was diagnosed with something when I was his age.

That something is autism. I am in my early 40s now and I never knew…no one ever told me. I didn’t believe it.  Who would?

So I went in and was screened. I was diagnosed as certainly on the Autism Spectrum. For those familiar with the spectrum I am either high end of Asperger’s or low end of HFA (High Functioning Autism). There is some question amongst experts if Asperger’s and HFA are different but let’s leave that discussion for another day.

Why put this on social media or mention it to anyone?

People who have kids with autism or who may have it themselves may think that persons with these diagnosis can’t do certain things. I am here to tell you that isn’t true. They are different than other people.  They may deal with people in ways you wouldn’t normally, but that doesn’t mean they aren’t capable.

I personally feel I have accomplished a great deal despite not knowing this about myself. I have a PhD in Physics, I have authored technical journals, and published books.  I am an Army veteran, father, and an entrepreneur.  I worked as an engineer and have been a co-inventor on 19 U.S. Patents (mostly in nanotechnology). If you think autistic people have nothing to offer you would be wrong. I may view the world differently than most people but perhaps that isn’t a bad thing.

Now that I know this about myself I can also work towards that other important part of life… the social side. As you go further in your career, how you deal with people is equally as important as anything else. That is the stage I am at and one huge reason I have been working on this diagnosis and ultimately improving how I cope with it. Once I can master that side, I will accomplish even more.

I appreciate everyone reading my post of the evening, and I assure you, this is not the last you will hear of Timothy James Imholt PhD, author, father, and concerned scientist.

by Timothy Imholt

Normally when I write a BLOG I rarely make it about things going on with me. Today I feel that I must rant about a local issue that is impacting one of my two sons.

I have a son who is autistic. He is a mild case, highly functioning but he is also at a very crucial point in his development (3.5 years old).

For those who aren’t familiar with the available services for these kids there are some amazing ones here in this state (if you can get to them).

Each child is evaluated by teams of professionals and given what is called an IEP (Individualize Education Plan). The parents and the school district review the plan (that the team comes up with) and it is eventually agreed upon. These plans are designed so that kids who are autistic (or have other problems) can start even with other kids when you get to the actual k-12 program.

It is a system that is far and gone above the one that was around when I was a kid. It really does make a difference in the lives of these children.

We recently moved from one school district to another in the same State. When we called the new school district and tried to enroll our son that is when all the fun started.

We did what any good parents would do. We called the enrollment office at the new district and said, hey we live here now, our son has this IEP from the other Massachusetts district, let’s get him enrolled.

They said (on the first call) that they were between sessions and everyone was out of the office so we would have to call back.

Fast forward a week, we call back, and were told that we have to bring his documented IEP into this one person at the district.

My wife takes the IEP in, drops it off, of course that person isn’t there, so it is left with an administrator who says it will get to this one, and only one person, who is permitted to review it and get the ball rolling.

Fast forward another few days, we call back and we get voicemail. We dutifully leave a detailed message and get no return call. I could repeat that story several times with many more unreturned calls.

Well, go forward another few days, the school year starts…still no return call.

Now school has been in session a week and we continue to leave messages, call, email, and yet we get nothing in return.

Now, if you have an autistic child, or know someone who does you know that breaks in services for these children can be very detrimental. They can drive them backwards in a big hurry and that is not what you want.

Now luckily my wife and I are in a position where we can get him some level of service privately (not nearly what he needs). We are doing that so at least it isn’t a total break. But if these services are going to be offered and advertised the least the people charged with enrolling students can do…is return a phone call. Just once.

Now that I am paying the taxes in this state that pay for these services I think I should be able to take advantage of them. Apparently paying taxes doesn’t imply that the services you pay for are yours to take advantage of. So, I will pay for them a second time and go private but unfortunately no everyone has that ability.

I will continue to fight the school district, as my son, as does everyone else’s (and daughter) deserves better than this. But I can’t help but wonder, if I were politically well connected, if I were, perhaps, related to someone at the school district, would things be different? The world may never know, in the mean time I will continue my crusade to get my son all of the services he is supposed to receive through the taxes I continue to pay.

Now, I find myself wondering what happens more and more as common core is implemented. I wonder if the commonality will be this type of service across all portions of the educational spectrum. I sure hope not. But there is always Catholic School!

I wonder if the State will reimburse me the taxes I pay for these services, as I had to go pay for them privately? Probably not. We can always dream I suppose.