Be Joyful in hope, Patient in affliction, faithful in prayer. Romans 12:12

Living in Jophies Jungle Headline Animator

Thursday, January 29, 2009

The Honorable Ted Strickland..........

It's Trina.......

You remember us right?

No??

Here let me refresh your memory

  1. Proud citizen of Kitts Hill (Very small town in southern Ohio)

  2. Single mom with one adopted medically fragile son FROM THE FOSTERCARE SYSTEM

  3. Small, single level doublewide trailer

  4. Black shutters

  5. Large wheelchair ramp


Is any of this sounding familiar yet? No?



OK so maybe you don't know us by name I am however certain you will remember us as a percentage or maybe a statistic? You know that little number representing families who are crumbling right before your very eyes?

For several months now we have been privvy to a "rumor" so we thought because how could this possibly be true? Could it really be? As the new year approached it became more evident that this so called "rumor" may in fact be a FACT. Many phone calls were made to no avail. It seems everyone else including those in seats of authority have also heard said "rumor" but really all said parties are unsure of its validity.

Back to Square one: Plan B


  1. Confirm or disprove validity of said "rumor"

  2. If said "rumor" is factual confirm details such as when and why to obviously protect the interests of those wearing "rumor" bullseye

  3. Attend meetings of important city officials to ascertain their take on the situation

  4. Request any assistance from said important officials


We did in fact attend said city council meeting. As to the validity of said "rumor" we still have no definitive answer however said officials were very compassionate and understanding offering their services in any way possible which included a letter in our behalf to you.

Thank you very important city council members for your help in this matter. We really appreciate all the effort you have and are making to help us in this situation.

What is said "rumor" you ask? I'm sure you will be familiar with said rumor once its revealed.

Adoption Assistance Cuts: What exactly does this mean? It sounds very straight to the point. Simple really yet very complex.

Is said assistance going to be cut completely in which case we will be without ANY INCOME?

Let me explain please:

Our situation has many extinuating circumstances.

MANY

This is my child: His name is Jophie


I NEED you to see his face.
I NEED you to SEE the face behind the story.

HE NEEDS YOUR HELP

Jophies needs are very complex. When I adopted him I knew he had a very guarded life expectancy and he was not expected to live long.

BUT HE DID

Jophie has a long list of diagnosis that have grown and continue to grow as his disease and the results of it progress.

Please remember that beautiful face and that "light up the world smile" up top as you read through this massive list of diagnosis that my child so bravely endures........

EVERY SINGLE DAY

  1. Severe Cerebral Palsy
  2. Spastic Quadraplegic meaning all 4 limbs are affected
  3. Brain Damage
  4. Mental Retardation
  5. Microencephaly
  6. Seizure Disorder
  7. Visually Impaired
  8. Non-Verbal
  9. Non-Ambulatory
  10. Oxygen and Suction Dependent
  11. G-Tube Fed
  12. GERD(Gastric Esophogeal Reflux Disease)
  13. Fundoplication (Surgical procedure that essentually wrapped his esophogus around itself making a very tight/small opening so as to prevent deadly silent reflux/aspiration
  14. Severe Asthma/Allergies
  15. Severe COPD(Chronic Obstructive Pulmonary Disease)
  16. Degnerative and Progressive Lung Disease that will eventually take his life.
  17. Adrenal Failure
  18. Severe Kyphosis (Severe curve causing a twisting abnormality of the trunk creating a hump on the side...Jophies is a more than 90 degree curve causing him to lean/crush the area where his heart/left lung is) You don't need to know anything about Kyphosis to know that is a "Kiss your butt curve"
  19. Scoliosis (Very minor compared to his degree of Kyphosis but debilitating and painful just the same)
  20. SID(Sensory Integration Disorder)
  21. Chronic Constipation
  22. Silent Reflux
  23. Silent Aspiration
  24. Colonized with Pseudomonis(Might as well be another death sentence)
  25. Tracheostomy placed in the spring of 2008 to save/prolong his life

Now go back up one more time and look at his face.

He should not have survived over and over again but HE HAS....

Myself along with very dedicated nurses work feverishly 24/7 to help maintain my sons health.

To keep him alive....

To keep him comfortable....

To keep him happy......

To no fault of his own he has been dealt these devastating blows and he DESERVES every single ounce of everything within me to make whats left of his life HAPPY, COMFORTABLE, and above all PAIN FREE.

When I adopted Jophie we negotiated an adoption amount based on his severe needs. At the time his needs were very complex but over the years those needs have grown in complexity as well as severity. He is very medically fragile requiring 24 hours a day of full eye contact as well as several pieces of life support equipment and monitors to help us with this very huge but rewarding responsibility.

We utilize Ohios wonderful Medicaid Waiver program which allows me to care for my son in my home and also saves the states millions of dollars. We are very thankful for this program and believe in its valuable service to the disabled community.

He also receives Ohio Medicaid as part of his adoption agreement. We are also thankful for this service as well however, it is VERY FLAWED.

I've given up everything to care for my son and all I have ever asked in return is for the state to meet me halfway. Please just uphold your part of the agreement. Even still there have been months we have went as long as 3 months with NO PAY. Imagine not getting your check for 3 months. How would you pay your bills? How would you eat?

HOW DO I KEEP HIM ALIVE UNTIL HIS SUPPORT ARRIVES?

Ohio medicaid in its flawed state continues to target the most needy in the community slaughtering the innocent and disabled.

Who in their right mind would want to attack the least of these?

Jophies needs medically are vast meaning specialized equipment, therapies, medications, medical supplies and even life saving devices. I struggle daily in the fight to obtain what is needed.

NOT wanted......

NEEDED TO LIVE......

On a regular basis I get letters from medicaid with those ever ominous words stamped oh so boldly...

DENIED! DENIED! DENIED!

More than not the reason------

  1. This is considered a luxery item???

Also often stated-------

  1. We need more information???
  2. We need pictures???
  3. We need price lists???
  4. We need doctors statement and/or PA(Pre-Approval)

Now before anyone jumps to conclusions about his doctor let me just say.....Without her he would not even have HALF of what he does have. She is very diligent and prompt in doing her part to make sure he recieves what he needs however, her hands are being tied by Ohio Medicaid.

Imagine the frustration and helplessness you would feel when you order a certain quantity of something needed desperately by a medically fragile patient of yours to keep them alive only to be told.....

We will only approve HALF of what you say this child needs.

Since when do these "no face/no name" individuals making these decisions(who by the way know NOTHING about my son nor have they ever even LAID EYES ON HIM) but are rather lumping ONE possibly a few of his diagnosis under this "XYZ disease umbrella" assuming everyone with this "XYZ" disease has the EXACT same problems so therefore would require/need exactly the same quantity of medical supplies and/or treatments ect....

My sons pediatrician does in fact KNOW HIM. She knows his needs and does in fact have some fancy letters after her name stating so. How can we belittle these doctors who have worked so hard to preserve and protect the lives of our children? How can we slap them across the face by denying what they say is required? It is a slap across the face and you might as well be telling them all their training and knowledge was for not because "we know" whats best for this "statistic child" not you.

Exuse me for just one moment please:

Just because patient "A" has Cerebral Palsy and patient "B" has Cerebral Palsy it certainly does not mean they have the exact same disease. Sure in name its the same but in progression/severity it has no bearing. My sons is severe while others are moderate and some are even mild. My son would require many different types of support/supplies/equipment as opposed to say a mild case of CP. He has many Co-morbid diseases that go along with his CP making him unique as compared to even another child with severe CP.

There are so many other examples but from experience I can speak about CP with confidence knowing fully they are NOT exactly the same and in the same breath neither are any of his other diagnosis the same in comparison to other children who may be struggling with similar or the same disorders.

You would no more use an umbrella to saw down a tree no more than you would use a saw to protect your head from a rain storm.

I have "begged" for the powers that be on the state level to COME VISIT US. Please come to my home and meet my son. Meet me. Observe for 24 hours.

I suspect many would RUN away as fast as they could because when you have to LOOK at the face of whom you are hurting it becomes "real"

Life behind these walls is not for the squemish or faint.

Life behind these walls is very Raw and very Real.

We struggle daily to keep him alive. It requires great effort and dedication never deviating from his very demanding schedule/needs and can I just say my son is worth all the blood, sweat and tears and so much more!

It IS OUR LIFE. It is what it is and it's the life of many more americans who are raising medically fragile children either by birth or adoption. It makes no difference as the pain and reality are still one in the same.

I've discovered that the best way for people to deal with this type of situation is to adopt the theory...."If you don't see it then it couldn't possibly exist?"

Could it?

This couldn't possibly be happening in this great nation of ours. Could it?

When forced to look at the situation square in the eyes then that child/children are no longer a statistic or number on a page. They are alive and breathing and clearly suffering at the hands of our government.

I do have a name for this type of service that is being dealt out at alarming rates.....

I like to call it "Selective CPR"

"BEGIN CPR the patient is not breathing and their heart is not beating!!"

DENIED! DENIED! DENIED!

You can choose ONLY ONE of those options and you must pay for the other because we've decided we know whats best for your child not his doctor.....So, unless you have said dollar amount on you then you must choose only ONE....

Do you give rescue breaths or do you do chest compressions? Hmmm? Which way would I like my child to die today. Respiratory failure or heart attack? If I wait much longer deciding he'll be brain dead anyway which then automatically cancels your first two options leaving you with only the last option which is death! Hmmm? Which do I choose? Bad...Worse or devastating?

It may sound a bit Harsh or maybe a bit drastic however, when faced with these decisions pertaining to my childs needs they ARE IN FACT life and death choices. There needs to be some better options or should I say some "life saving" options. I promise you would have some very happy mommas if we were given a few ways to save our children rather than deny and/or take away what little they have to begin with and more than not putting their life/health at risk.

A perfect example:

My son requires 4 trachs per month. Once again there are extinuating circumstances which were explained fully in a LETTER to the STATE by his doctor as required after the first and second denial. They still see fit to only approve 2 per month which puts his life/health at great risk. What do I do? Appeal? I don't think so....

There is what I like to call a "sneaky little loophole"

You CAN appeal a denial IF you were "really denied" as opposed to "just denied" which are both entirely 2 different things. If you are "really denied" with no extra fancy words on the page like (need price list or pictures) then you have TRULY been denied in which case you can appeal said matter because they are NOT giving you even ONE however, IF you are "just denied" followed by some fancy little words as stated above then you CAN in fact appeal it. Can't you? Well "sort of and not really"

Are you following me?? Clear as Mud??

Call State...
Wait on hold a looooooooong time......

A sinkful of dirty dishes, diaper change and my prepared lunch later they answer......

Me: Hi I'm Trina Malone mom to Jophie case number blah blah blah. We have just gotten this denial in the mail stating not all of his trachs are going to be paid for. His doctor is requiring 4 per month due to extinuating circumstances.(Try to begin explaining said circumstances)

Big important person at State Level Who Has Never laid eyes on my son: Name Please

Me: Trina Malone

Big Important person at State Level Who Has Never laid eyes on my son: Case number on Letter Please

Me: Case 1234

Big Important person at State Level Who Has Never Laid eyes on my son: How can I help you?

Me: Repeat first sentence:

Big Important person at State Level Who Has Never Laid eyes on my son: Hmmm? Let me see

Me: Silence

Me: Waits Patiently

Big Important person at State Level Who Has Never Laid eyes on my son: It seems you won't be able to appeal this. We haven't "actually" denied it because we "actually" approved 2 so what you really have here is "limited quantities" as opposed to "not really" denied however, if you would like to see if you could get me the answers to the information we are requesting then we "might" be able to help you.

Me: Thank you I will get right on that

Big Important person at State Level Who Has Never Laid eyes on my son: Have a nice day. Click

Me: Phone Pediatrician who has ALREADY sent this information on numerous occasions and who agrees to do it AGAIN because she loves my son and wants only the best for him repeats the requested tasks AGAIN taking time out of her very busy schedule because she LOVES my son. She has a personal relationship with him. She KNOWS him. She KNOWS what he needs because she physcially SEES him on a regular basis and because......

She LOVES him....

This saga goes round and round as we play the game of life in hopes that one day we might actually see the words APPROVED but, for now we continue to play this game taking it one day at a time....One piece of equipment at a time....One medical supply at a time....One trach at a time....

I'm not even going to get into the medical supply folks who are charging in upwards of 400 to 500 percent "ABOVE COST" on items costing the government millions when I could in fact take said money and purchase at a much lower cost! It's robbery on their part and should be illegal!

So not only are we being jabbed by the government by denying these life saving necessary items but we are also getting double jabbed by the medical supply folks who we have to buy said items from that are uncovered which we can't afford and are then forced to buy out of date or used items putting our children at greater risk. Of course medicaid WILL in fact pay for a surgery costing THOUSANDS to correct my sons deformed hands but wouldn't cover $75.00 for Benix gloves to prevent said deformity in the first place?

And, let me just clarify. Benix gloves are not mittens (They seriously thought that when we requested them) These are not something to keep your hands warm. They are genuine hand crafted by PROFESSIONALS hand orthotics to prevent painful deformities and to prevent painful and costly surgeries.

There is something VERY WRONG with that picture.

I'd like to ask you to do something for me.

The next time you look up towards the heavens and see a plane just imagine that plane is being held hostage. Lets say said plane is full of innocent disabled children and their parents and just to make it interesting lets also say said plane is going to crash into a popluated area. The decision is made to shoot said plane down for the greater good saving the larger number while sacrificing the smaller number.

We are on that plane Mr. Strickland...

Although our numbers are vast in the great picture we are the minority. The weak, the old, the disabled and yes my son (A child among many) who is very medically fragile and very dependent on me and our government for his survival.

We are being shot down. We are crumbling before Americas eyes. We are slipping between the cracks. We are going unnoticed. Please take notice before its too late.

I know our country is in dire straights and many will have to sacrifice for the greater good but does it have to be the weak and the least of these? Does it have to be those who have already been dealt a hearty dose of devastation? Those who depend so greatly on others for survival? Those who can NOT defend themselves?

Many Americans are only just now feeling the effects of this devastation. We have been feeling it from the day I adopted him almost 16 years ago. Yes this system HAS been broken that long. We are invisible to the world and only now that its affecting millions is it being noticed. My fear is that even when things were seemingly "good" we were invisible and now that it's massively spreading like a contagious disease we certainly will be swallowed up and no one will be the wiser.

I AM my sons voice. I HAVE to be the best advocate ever for him. His life depends on my ability to do this and do it well. If I have to scream it from the mountain tops we WILL be heard! He will be noticed and he will be rescued from this madness!

All I'm asking is that you take all this into consideration when making your decisions about adoption assistance. Please consider who this will affect and how devastating this will be.

And for all my family, friends and anyone else who feels so inclined, please consider printing out the following letter and mailing it on our behalf.

This letter was written by 2 dear friends on our behalf.

Thank you Jon and Jon Mark! ;0)

Letter to the Govenor:

http://silentangels4me0.tripod.com/GovenorLetter.html

For those of you who may not know us or may be landing here for the first time, let me just reiterate what is quite possibly the most heartfelt statement I have made to date echoing loudly the importance of my child and many others just like him.

"There is a God, I am loved, and above all he is in control.
I am not a mistake nor am I damaged goods.
I AM perfectly made and worthy of saving."

"A masterpiece."

Respectfully,

Katrina Malone and Jophie


3 comments:

Alesha said...

AMEN.

val said...

Sincerely hope the letter does some good. As if you didn't have anything better to do with your time.

And if I wasn't already grateful for the NHS here in the UK (already am having had prem twins in special care for 4 months - both still using it -far too frequently I certainly am having read your post.

Val

Tia said...

Amen let it be so. Excellent letter Trina, I hope it moves mountains.

Feed my Fishies