Are You Covered?

Anastasiya and Nadiya Nov. 2009
With healthcare costs rising maybe this isn't too far fetched!

      Often when people learn about Nadiya's case they assume her disability entitles her to a multitude of services and support.  They assume her disability warrants it. The truth of the matter is Nadiya qualifies for very little. From the moment this journey started with Nadiya I knew I would never teach again and it was possible that I would never be able to work at all. I knew my time would be devoted to managing her case and her care. In fact, I wondered if there would be any meaningful work or gainful employment possible ever.





My husband is a software engineer so he supports our family while I stay at home with the kids. It can be hard work. When the kids were small I remember thinking that teaching middle school was easier.

          For a typical family this would be enough and financially we would have be in good shape.  Unfortunately we aren't a typical family and Nadiya was unstable during those early years and required frequent hospitalization.  Our insurance at the time covered some of Nadiya's needs but not enough. I remember constant battles with the insurance company and the hospital over coverage and billing errors.  It consumed my days in between caring for Nadiya and meeting her sister's needs as well. We even had to take out a home equity loan to pay Nadiya's medical bills.  Today we have better insurance but it still isn't enough for Nadiya. The company often denies Durable Medical Equipment (DME) and other things like medical diapers. The co-pays are high and we pay a large portion for Nadiya's medications especially her compounded drugs.
           Repeatedly we have tried to get Nadiya assistance.  Nadiya does not qualify for Medical assistance. Since her father has a job where he makes a fair salary she does not qualify based on income regardless of her medical condition and needs.  We are forced to pay out of pocket for many of her needs.  Caring for a profoundly disabled child is expensive.  For the same reasons Nadiya does not get Social Security. Because she does not get Medical Assistance she does not qualify for Rare and Expensive Medical (REM). These government assistance plans are set up so that you get it all or you get nothing.  Nadiya gets nothing.  At the same time, as a middle class family we pay very high taxes in our state and do not get a tax break for managing Nadiya's needs without assistance.

How well was your physician trained? 
Do they specialize in pediatrics? 

        There is something for middle class families called Model Waiver.  This is a Medical Assistance program  but there are only 200 spots available in the state of Maryland.  Nadiya is on a waiting list where she will likely be for several more years.  We hope that this program isn't eliminated by the time Nadiya's wait is complete. At 18 she will qualify for Medical Assistance but that is 9 years away. Nadiya is 9 years old now. In order for a spot to become available someone needs to move out of state, age out after the age of 21, have a miraculous recovery, or pass away.  Spots do not become available frequently.  Where this may look like a solution it only serves 200 kids at a time. 

         Middle class families can apply for Low Intensity Support Funding (LISS) which provides $3,000 a year to disabled children regardless of income.  This is a first come first serve basis and only if funding id available and they approve your application.  We will applied for funding for a year's worth of weekly physical therapy co-pays totaling about $2,000.  Nadiya was denied because the LISS funds were depleted after the first day.  Nadiya's application is stamped July 2nd which was day two of them accepting applications.  It is disheartening that this has happened.  Now LISS, which was the only available support for Nadiya, has become an ineffective source of support for Nadiya.
 

Can you afford the advancements in science?
(Anastasiya conducting a chemistry experiment)

        Meanwhile our government is providing Medical Assistance for many people who shouldn't have it. There are people who abuse drugs and alcohol and will not work so they are covered.  There are many committing fraud and lying to receive services they are not entitled to.  I am not saying there are not families who really need MA and are entitled to it. I am saying that often these services go to the wrong people.
          As the system is set up now families who stay together are not rewarded, in fact they are penalized.  If we placed Nadiya in foster care she would be covered.  If David abandoned us we'd all be covered.  If David or I had a substance abuse problem or a physical or mental illness that we refused to treat we would be covered.  Because we work hard to stay together and manage Nadiya's care we are not covered.  In fact our government expects us to cover entitlements with the tremendous amount of taxes they are taking from David's paycheck and as I said we do not even get a tax break for managing Nadiya's care.  This is a broken system that leaves the disabled children of middle class families behind.

 February 2009- at 5 years old Nadiya
was diagnosed with Lennox Gastaut after
an extensive inpatient EEG.

          What Are Insurance Companies Covering?

         Before you say that middle class families can better afford this I need to put things into perspective for you.   We have insurance and for a typical, healthy family this might be OK.  Here is the breakdown of medical costs for Nadiya.  I am sure it is similar for other middle class families with a disabled child who are in our position. 
         A significant chunk of money comes out of David's salary for our benefits.  That amount just increased as of January 1st and will likely go up again next year.  It costs us $30.00 for Nadiya to see the pediatrician when she is sick.  During the winter that is frequent.  Nadiya sees many specialists.  Usually we average one specialist per month but sometimes more.  This September Nadiya will see 3 specialists.  The co-pay for a specialist is $40.00 per visit. In addition Nadiya has several prescriptions filled each month at the regular pharmacy ranging from $9.00 to $45.00 each and the shipped compounded medications are even more expensive. 


         Nadiya's Nano vitamin and

Medications can get expensive.

Calcium and vitamin D supplements are not covered at all.  We used to have therapies covered at 100%.  Now there is a $40.00 co-pay for each Physical Therapy (PT) session.  That adds up.  As it is this discourages patients from receiving medically necessary rehab after surgery because they cant afford $120 to $200.00 per week for rehab.  For a disabled child they usually require weekly sessions for an indefinite period of time just to maintain their skills and prevent atrophy.  Since we have become aware of Nadiya's bone density problems we know she needs private PT at least once per week.  At $160.00 per month that adds up.  Who can afford to do all of this?  We fear this high co-pay will soon be applied to Nadiya's other therapies which would affect her speech, OT, and feeding clinic therapies as well.  In addition insurance companies often deny DME (Durable Medical Equipment).  For us they only seem to cover wheelchairs and walkers.  The rest we are left to deal with.  Appropriate seating can cost $1,500 to $2,000.  An adaptive potty costs $1,000 and a bath seat can cost anywhere between $500 to $1,000.  If the equipment needs extra supports that can increase the cost of a piece of equipment.  Our insurance does not cover medical diapers but Medicaid does; Medicaid even covers having them delivered to the child's door.  Our portion of Emergency Room cost is a $200.00 copay.  We have had unstable moments where Nadiya went to the Emergency Room several times in a year.  Now we also have a co-pay for imaging.  In the past Nadiya has had 3 MRIs, a CT scan, and too many x-rays to count.   From now on we will be charged for these as well.

November 2010 - Nadiya 6 years old
after bi-lateral hip surgery

       Nadiya had her annual Genetics clinic last month and though there are several tests the Geneticist wants to run on Nadiya the insurance company will not commit to covering the tests.  Each test can run thousands of dollars which is a devastating bill for a family to get stuck with.  We were told this is happening more and more often with all insurance companies.  So the science may be available but the healthcare system is not willing to fund these tests.  

       All of these things quickly add up every month.  Even if Nadiya had Medicaid just as a co-insurance we would be able to manage much better.  Right now there doesn't seem like there will be any relief in sight.  To make matters worse our insurance is a self funded plan with no regulatory agency.  They have final fiduciary over appeals and disputes so there is no recourse.  A self funded plan does not answer to the insurance commissioner.  With the push toward federal healthcare private insurance seems to be getting more and more costly and covering less and less.

                    The Problem Is Bigger Than My Family
      
          If you have aging parents you probably have heard them complain about Medicare and their supplemental insurance as well.  The costs are extreme for many and rising though they are on a fixed income.  Don't misunderstand me though, I am not in favor of a universal healthcare system either.  I think Healthcare reform is a better answer.  Insurance companies have been given way too much power in deciding what your care should be and how your conditions should be treated.  They determine which doctors you can see and how often. 



 

Are all of the members of your surgical team in network?
(Anastasiya and friends operate on a giraffe.)

  Many states have a shortage of pediatric specialties because the training is so expensive.  Every year in June, Children's Hospitals advocate for funding for specialty training during Family Advocacy Week.  Even with many hospitals in Maryland specializing in pediatrics there is a problem with these specialists being in network with our insurance.  The insurance company will say there are plenty of Psychologists or Durable Medical Vendors in network, for example.  The problem is none of them specialize in pediatrics.  That can really complicate things and force a family to pay out of network costs.
           The only people who do not seem to be affect by this are people who are well.  When you see a primary care physician once a year and your children rarely get sick, healthcare is not a huge concern.  I think everyone should be aware that tragedy can strike anytime.  Anyone can have a child with profound disabilities.  I did everything right and had a healthy pregnancy with no family history of problems and yet I had a child who has multiple disabilities.  People are surviving diseases and traumas that science could not treat decades ago.  Healthcare Insurance needs to support these advancements in treatment, care, and diagnostic ability.  From cancer to heart disease to epilepsy, trauma, and beyond.  This issue can affect anyone at any time.

   
What is the Answer for Families with Disabled Children?



Are you able to choose your own doctor
or does your insurance company do that
for you?
 

         To me the answer is simple.  Severely disabled children should qualify for Medicaid based on their level of disability and not on the basis of their middle class status.  Only the very wealthy can manage these costs without assistance.  The very poor have the assistance and their coverage is way better than Nadiya's.  The middle class are left in the middle.  Law makers and government officials are ignoring the cries of these families and at the same time taking more and more from them to support entitlement programs.  There is so much waste and not enough regulation that Medicaid is grossly abused.  The middle class are paying for this.  I refuse to believe that there is not a way to support those who need it without gouging the middle class.  No one seems to care to find the answer.
         I have said this before but I feel I need to say it again. At the end of the day our country is proud of its diversity.  Groups will advocate for their race, religion, sexual orientation, age, or gender but the disabled often have no voice of their own.  Their caregivers are exhausted and so this group is overlooked.  We must address the needs of disabled Children in Maryland regardless of their class or whether they have two parents over one.  Let’s start looking at the severity   of their disability and their intense needs. 




  New discoveries are being made each year to advance
medicine.  Who knows what the next generation of
scientists will discover. (Anastasiya's friend looks
for a cure for the Giraffe's disease.)

          Everyone should be aware of their benefits and how they are changing each year.  You should be aware of how the changes affect you and your family. Changes in the law should be monitored and your voice should be heard.  Educate yourself.  The people who make the laws and the insurance companies are not looking out for you.  They are looking to save money and generate revenue.  We should be celebrating science and advancements in treatment not wondering if our coverage is good enough for us to reap the benefit.
      
            I  will keep talking to the politicians and keep advocating for middle class families with disabled children.  The more voices that sound together the stronger the message will be.  The only way to force change is to get involved.  People ask me if Nadiya is covered all of the time.  I begin my answer with, "That depends..."  Everyone wants to believe that all disabled children have affordable medical care but the reality is that the middle class have been forgotten.  If the middle class is forced into bankruptcy who will take care of everyone else?  In the meantime if you or your child become seriously ill are you covered?    

Anastasiya hopes to be a surgeon or a research scientist some day. 
She is fascinated with the brain and how it works. 
Maybe one day she will discover ways to correct brain disorders
such as epilepsy and dementia.
(Here at about 6 years old Anastasiya administers a vaccine to one of her stuffed animals.)

It's All in the Bones

 



Nadiya's hip x-ray with the
hardware still in place after surgery

The Bare Bones of the Matter


        
              When things feel as if they have calmed or that life is becoming balanced and controlled there is always something to jeopardize that balance.  As I looked forward to summer, well aware of the many tasks ahead of me, I still felt Nadiya’s health was good.  Things were going well with Nadiya medically. That is until Nadiya had a Dexa Scan which is a scan to measure bone density. The scan specifically looked at the hips and the spine which are common problem areas. Typically this becomes an issue as we age and particularly for woman. As we age we can develop osteopenia which is a condition where the bone mineral density is lower than normal. This can be a precursor to osteoporosis which is a disease of the bones where the bones become porous and are at high risk of fracture or break. Some causes are lack of weight bearing exercise, inadequate vitamin D and Calcium intake, medications, chemotherapy, among others.  Some of you may recall me talking about this many years ago when Nadiya first saw an orthopedic surgeon.  We always knew Nadiya would be at risk.

Osteopenia and Osteoporosis are unusual in children but Nadiya has several risk factors. Think of yourself as a child or think of your own young children. In the first few years of life you climbed and walked and jumped exploring whatever you could reach. Nadiya spent her first few years unable to sit up and unable to walk. Her weight bearing activity consisted of the time she could tolerate being in a stander. So as Nadiya's bones grew she didn't have the weight bearing activity to strengthen them like typical children do. This is why she had the subluxation in her hips which resulted in surgery to place the hips properly in the sockets and reform the proper angle of the femur bones.  It is common for children with severe Cerebral Palsy to have hip problems and bone mass problems.

In addition to that risk factor Nadiya has been on the Ketogenic diet for 6 and a half years. The diet is significantly controlling her seizures but it is nutritionally deficient. This is why Nadiya has had to take a special Nano Vitamin supplement twice a day. Last year at the request of my dermatologists I asked the Keto Team about increasing Nadiya's vitamin D and Calcium. Keep in mind that much has changed over the period of time that Nadiya has been on this diet. When a child was born with Epilepsy it was thought that medication should be attempted first to control the seizures.  The Ketogenic diet was considered a last resort. Now if a child is diagnosed with Infantile Spasms, which Nadiya was, the diet is recommended as the first course of treatment.  Research has shown that the children with Infantile Spasms have the best results when the diet is started immediately upon diagnosis. Nadiya was two when she started the diet and only after the failed attempt of several medications. Today it would have been tried first. For whatever reason the diet works for Nadiya but only when she is on it. Many children with epilepsy go off the diet and remain seizure free. We know that isn’t the case for Nadiya so she will be on the diet long term. Just recently neurologists are realizing the long term affects of the ketogenic Diet on a child's bone density. This is what prompted Nadiya's Dexa Scan. My dermatologist seemed to be a step ahead as she pondered the affects of the diet years ago after having met Nadiya and seeing her fair skin. That is how a dermatologist thinks.   A neurologist is focused on seizure control which is usually the urgent and most prominent problem.

Another risk factor for Nadiya is one of her anticonvulsants she has taken for almost 4 years which is Depakote or Valproic Acid. It has been shown to increase the risk of Osteoporosis in adults and children. But it works with the Ketogenic diet in keeping Nadiya seizure free.

 

 

 

Make No Bones about It

So my friend Lisa and I took Nadiya to Hopkins for the Dexa scan. Lisa had to hold Nadiya's knees in place while I kept her arms up and away from her chest. It was a very quick scan and Nadiya was extremely interested in the imaging machine that moved back and forth over her.  This made Nadiya easy to manage during the quick scan.

Nadiya's neurologist called me two days later to tell me that Nadiya had Osteopenia in her hips and that her spine was worse and of concern. He did not say she had Osteoporosis for sure in her spine but that we should see an Endocrinologist. Endocrinology is the branch of physiology and medicine concerned with endocrine glands and hormones. They address things from diabetes, thyroid conditions, and problems with reproduction to metabolic disorders. Nadiya's neurologist spoke to a Pediatric Endocrinologist at Hopkins who is familiar with the Ketogenic Diet. Because it is so difficult to get an appointment with a pediatric specialist Nadiya will have to wait until September.  The appointment was made last spring. That has given me a great deal of anxiety but the neurologist feels it is ok to wait until then. He thinks Nadiya will need additional supplements but they will have to be Keto-friendly.

Nadiya walking with Yuba the Therapy Dog

 at Mt. Washington Pediatric Hospital

My guess is that Nadiya will require more weight bearing activity as well and that additional physical therapy will be necessary. Right now Nadiya has weekly PT at school and daily weight baring activity throughout her day. We have not been accessing private PT because our insurance plan now requires a co-pay of $40.00 per session. Imagine if you needed rehab after an injury or a surgery. You might need PT 3-5 times per week. How many people would ignore the order for PT because they couldn't afford it?  I worry so much about Nadiya's future healthcare needs. It is getting worse every year as Nadiya's needs increase and our insurance covers less. Remember Nadiya does not qualify for Medicaid, Social Security or Rare and Expensive medical (REM).  The therapy we get for Nadiya is through school and through our insurance.

The Bone of Contention

Nadiya and her teacher in a bounce house
during Challenge Day

Many are probably wondering why we don't take Nadiya off the ketogenic diet. Yes it is true that the diet has undesirable long term effects that could prove harmful but for us the alternative is worse. David said it best many years ago when we were just starting out on this journey. He said, "It is our job to provide the best quality of life that Nadiya is capable of having. It will be different than that of Anastasiya or other typical children." Those words have guided me through many difficult decisions and have kept me focused on what matters. David and I have always believed in quality over quantity. For Nadiya to live in an unaware sedated and greatly impaired state until she is a100 years old is not a good quality of life.

Before the Ketogenic Diet, Nadiya's quality of life was very poor.  Her personality was locked in a body that was overmedicated and a brain that was buried in seizure activity.  Every time she would meet a milestone or make a gain she would lose it to a huge Grand Mal Seizure (Tonic Clonic Seizure).   By the time she would regain the skills she would have another debilitating Tonic Clonic seizure.  When Nadiya was riddled with seizures she could not look at us or bond with us.  She slept all of the time and rarely interacted with her world.  Her quality of life was very poor and her health was unstable.  We can’t imagine going back to that. 

Nadiya’s Infantile Spasms progressed into Lennox-Gastaut Syndrome (LGS).  Left untreated those seizure types associated with LGS can result in Status Epilepticus which is a life-threatening condition in which the brain is in a persistent state of seizure.  This could be a seizure lasting longer than a half hour or having clusters of seizures within a short period of time.  When Nadiya was 18 months she reached Status.  For her it was a Tonic Clonic seizure that lasted over an hour followed by a shorter seizure within minutes of the first one resolving.   This is serious and dangerous.  Uncontrolled Epilepsy can also result in Sudden Unexplained Death in Epilepsy (SUDEP) which is when an epileptic dies suddenly after a seizure from respiratory failure or cardiac arrest. 

These are serious risks for having uncontrolled seizures.  We feel it is most important to manage the seizures.  For Nadiya that means staying on the Ketogenic Diet and taking a low dose of Lamictal and an adequate dose of Depakote.  LGS is one of the most difficult to manage seizure disorders.  The fact that we found a way to manage it means everything.  It is worth managing the adverse and long term affects of these successful treatments which we will do.  I am not sure what that will mean for managing Nadiya’s bone density concerns but I will be prepared for whatever that will entail.

Nadiya walking in her kid walk

This is a lesson to all of us.  Talk to your dermatologists and primary care physicians about your vitamin D and Calcium intake.  Make sure you are getting enough weight baring activity.  Know your medications, their side effects and their risk to your bone health.  Get a Dexa Scan.  At the least it will create a baseline and at best it will alert you to a problem before it gets out of hand.  If you have a child with circumstances similar to Nadiya it is very important to be aware of their bone health.  Nadiya has come way too far to stop now.  I still hold a realistic hope that she will walk some day without a kid Walk and without adult assistance.  The first step to that is protecting her bone health.