Before I dive into this topic I feel something needs to be clarified. There’s this misconception in the special needs community that all of our stories need to filled with hope and joy and a light at the end of the tunnel. That everything we write about should be rays of sunshine. And oh yes we had a little struggle but look at how amazing everything is now and how much we have over come! I’m here to call bullshit. Not every story has a happy ending. And our stories certainly don’t just begin and end with one struggle we have overcome. There’s a lot more to the journey that is the life of a medically dependent or special needs child and it’s full of constant battles that never allow us to come up for air. And yes. Maybe we will have a happy ending and win the war. But that doesn’t mean I’m going to tell our story in a way that makes you feel all warm and fuzzy inside. So here it is. Here’s just a sliver of one of our current realities.
Don’t get me wrong. I’m not saying there are no happy endings and that we aren’t filled with amazement and happiness for everything our son accomplishes and endures. We are beyond luckier than most families in our position and are often far better off with our incredible support network. What I am saying is just as anyone who has lived this life. Happy endings and fuzzy feelings are not a constant.
4 years ago the story of my son’s journey as a micro-preemie was posted on CNN and various other news outlets. It was a story of hope and perseverance in a time of struggle. A story of love in the face of fear. It was a happy ending to one of the hardest experiences a parent could face.
So where are we now and how is Beckham today? I am here not to tell you the story of how this amazing 1 lb 8 oz baby has turned into a thriving young boy that defied all the odds, but instead an account of how the American Health System and government have done him and every special needs child that lives in the United States a great dis-service. A system that is set to not only harm even it’s healthiest citizens but to destroy its most vulnerable. This is what I call The American Scheme. It is the illusion that in America you can have whatever your heart desires and make all your dreams come true with a little bit of hard work only to find a knife in your back just before crossing the finish line.
This morning I await a major decision that will change the course of my son’s care and our family dynamic. It is a battle we face at the beginning of every new year when our insurance re-sets. But this year feels different. This year the insurance company (BCBS) seems determined to not provide my son with in home nursing care. We were made to make the switch from Cigna this year as they were no longer covering some of our sons providers. While under the impression we would have the same coverage as the plans are identical through my company, BCBS rather than processing this as a claim has found a better method of denial which is during the “Pre_auth” phase. This makes it easier for them and harder on us because they can deny the entire benefit preventing us from even finding an out of network provider for the service and paying the extra cost. While Beckham survived a great ordeal after 6 months in the NICU he still has several medical complications. He has cerebral palsy, is unable to eat or drink by mouth, unable to speak, has ataxia which prevents him from being “safely” mobile, chronic lung disease, chronic kidney disease, and more. Beckham is required to attend 3 therapies twice a week at 1 hour per session. His age puts him in a space where he is not yet old enough for school. Daycares won’t accept him as he eats via a tube (button) in his stomach. This is just a very quick snapshot into Beckham’s current state and while I could dive into the last 5 years of his incredible successes the point is that I take you on the journey of how the American system sets children like him and their families up to fail. These children are prisoners of their medical conditions and a system that wants to throw them in a corner and forget they exist.
So let’s start with the beginning of the failures. The insurance company. These companies exist for financial gain. That is the bottom line. Their goal is profit, not care. The people who run these companies are not medically trained, they hire medically trained staff but they built insurance as a business. They care only about how they can save money and make money. We pay a significant amount of money per month for the service so that insurance will cover our health needs, in addition we have to pay deductibles, certain % of each bill and have maximum out of pocket costs. Depending on if the service is in or out of network, that out-of-pocket cost may vary. For my family it’s roughly $25,000 a year. So, I have a service that I need insurance to cover. I have seen a medical professional for this issue let’s say it’s nursing care for my son. His doctor (the trained professional) has determined he needs this service and submits the orders to the insurance company. The insurance company now has a certain timeline to meet to review. This can be anywhere from 2 weeks – 60 days and you can bet every time they will take the maximum amount of time for that grace period to ensure they are not having to pay for the service as long as possible. Then, someone in the insurance company decides that a child having a G button qualifies as custodial care and doesn’t really require a medical professional. This is the first denial. This sets up a wave of destruction when the insurance company contacts the nursing company and informs them of the denial, who then contact me and inform me that I no longer have the service but can continue for $2000 a week. Right. Then the phone calls begin. A working mother of 2 with a special needs child now has to sit for hours and days trying to gather information as to why this was denied and what she is supposed to do next to fight this denial. And she is supposed to do this while not having care for her son as it has been abruptly taken away. After days it is determined that a peer to peer needs to happen to review the denial and reverse it. What is a peer to peer – it is literally a meeting with the original doctor that submitted the order and the person that decided the insurance company would not cover the service. A phone call, where the medically trained specialist that knows Beckham’s case inside out and knows his needs, has to defend her diagnosis, treatment and recommendation. Let’s stop here and let that sink in. Here is failure number 1. Our doctors are not only being required to take on more hours, more patients, do more paper work, but now they have to add to their day, phone calls and fights with insurance companies just so their patients can receive the care they require. Think about if my son is just one of hundreds of patients for his pediatrician the amount of wasted time and effort where they could be seeing other patients in need. Want to know why it takes so long to get in to see your doctor? This is why.
So let’s say the denial sticks. We lose our nursing coverage. Well thankfully we live in the United States of America, the greatest country in the world where we value life above all, right? Wrong. What are my options? As I mentioned before daycares do not accept children with G buttons as this is a medical need. For children age 3-5 in the state of Texas there are early childhood programs but they are only 2-3 hours a day and here’s the kicker – they require an RN to be on staff. There are no options for children under 3 and once your child reaches school age. Once he reaches the age where he can be in a public school system his education plan while catered to him, will still require he is put in a class of children with varying abilities and his day to day will not be catered to him. Additionally, an RN is required to be on staff.
Then there’s the option of Medicaid. Medically he qualifies for Medicaid and would be able to receive all services needed through Medicaid but even if I quit my job as the primary breadwinner of the family, my husband’s teacher’s salary is still considered too much income and therefore disqualifies us from this benefit. You have to be living in extreme poverty to qualify. Yes, there is a Medicaid buy in option but again this requires a minimal income which a teacher’s salary is still considered too much. So there’s some perspective for you.
Then there are the oh so infamous waiver programs. Specialty programs created just for special needs to ensure all special needs children receive the care, treatment and supplies they need to thrive. What’s the issue? While my son qualifies for many of these programs the shortest waiting list is 5 years. We applied when Beckham was 2 years old which was the first time we had heard of these programs. No special needs children are far more likely to thrive and make significant progress the earlier they receive care and therapies. Because of budget restrictions the programs have a max cap of patients they can add per year, which in turn has created these waiting lists. So, our children are forced to wait for a benefit they need immediately and during the most crucial time of care. One list he is on has a 15 year waiting period. Spit out your coffee? Yes, you read that right. 15 years. To top it off the system is so fucked up that if you do not call every year at the same time of year to confirm you want your child to remain on the list they will remove your child from the list and you would need to reapply. You have 2 weeks after receiving your letter to respond. If you do finally make it to the top of the list and obtain the benefit, you will now have to have an annual review of your child’s status to ensure that they keep the benefit. Since we all know special needs children do not have conditions that are “cured”, it is just another way to put the utmost scrutiny on an already struggling family, to make sure they “deserve” the benefit, and to enable the providers a way to deny assistance. In this country it’s easier to obtain a gun, buy a car, buy a house, or even file your taxes than it is to get a special needs child health benefits.
So here we are down to the last of our care options. Medical has been denied on all fronts, special programs have been denied, the school system offers nothing to help what the average family requires. 2 working parents. And the most vulnerable is stuck in a corner and expected to accept the hand they have been dealt. The family is meant to suffer through hours and hours of battles with insurance providers, school districts, supply companies, Medicaid denials, waiver programs, the list goes on just to fight to get their child the basic tools for them to thrive like any other child. The family is forced to choose between a job that provides insurance that doesn’t cover their child’s care or quitting, filing for unemployment just so their child can receive Medicaid coverage and be taken care of even if it means they live in poverty. The family wants the best education for their child but their choices are a failing public school system or private specialized education at $50K a year. We have in every sense of the word imprisoned our most vulnerable children. Trapped them in a sea of paperwork and suffering. Denied them any chance of reaching their full potential because it does not appease the bottom line. And that bottom line is this country’s most prized possession. Money.
This country and every voter that lives in it has given all the power and decision making of our people’s health to people that only know data, numbers, and currency. Instead of trusting medical professionals that know and understand the patient and their needs. In this system we all suffer. But the most vulnerable, our children with disabilities, they aren’t even given a chance to step into the ring and fight. We are a country that has put so much value on life inside the womb and yet as soon as that fetus becomes a human being we throw up our hands and say “not my problem”.
The Bottom line is that the American system was created to crush our children and their families. We have lost sight of what the term equality means. Or rather we really never found it did we?
For every need we provide a thousand obstacles. There are hoops to jump through, paperwork to tirelessly sift through, phone calls we sit through for hours trying to reach a person on the other line, waitlists we patiently are added to and all of this while trying to hold a job and care for a child that requires 24/7 attention in an entirely different sense of the word. A child that requires triple the amount of effort and research and knowledge to complete just standard day-to-day tasks like feeding. We are a country that prides itself on the concept of “it takes a village” and our village does not exist. We have no support system. We are an island. And you are responsible for putting us here. Every person reading this has abandoned us in some way or another. We are alone, our children are alone.
I am just one person and we are just one of these families suffering among millions in this country that have children with special needs. And my family is far beyond better off than what most of our special needs’ families are. Most do not have the support system we have. Most don’t have jobs with the benefits we have, most may not even have the fight left in them or the knowledge we have been equipped with to continue their fight. And for their children we may never know what could have been done for them to reach their full potential because we haven’t given them a chance to even try.
So, congratulations America. If this is what you call being a first world country you can keep it. I don’t want it. And to all of my fellow parents with a child/children that have special needs looking for advice and support for what they can do to give their child a fighting chance I have one thing to offer: Move to another country.