Freedom Isn't Free

I've heard people say, "Freedom isn't free," in reference to the idea that we must make sacrifices in order to maintain our freedom. It's true. Freedom and responsibility are two sides of the same coin. In order to be free, we must be responsible. We must be willing to make sacrifices to meet our responsibilities in order to maintain our freedom. We cannot have freedom without responsibility.

The nurse who will be working with us from the Hemophilia Treatment Center came over the other night and brought a social worker with her. The purpose of the visit was for the social worker to discuss with us the various possibilities for financial assistance in paying for Nathaniel's treatment.

Nathaniel has severe type hemophilia, which means he will be receiving the blood clotting factor infusions 3 times weekly starting at about 9 months of age and lasting the rest of his life. As a baby and through early childhood, the factor infusions will cost about $600 per week. Lesley's insurance will cover the majority of that cost. At this time, and the numbers may be revised in the future, Lesley's insurance will cover nearly all but the copays. I believe at this time, our out of pocket expenses for Nathaniel's infusions will be a little over $100 per week, once he starts receiving the infusions. This cost includes the amount of copays for the prescription and office visits. As he grows into adolescence and adulthood, his treatment costs will increase, because he will need more of the blood clotting factor per infusion (prescription cost goes up). As he reaches adulthood, the cost of his infusions could reach $6,000.00 per week. Again, insurance will cover the majority of that cost, leaving us with copays, which will increase due to the increased prescription cost.

We thought the social worker was going to come with grant or scholarship information.

Nope. Not so much.

He explained to us that Nathaniel's level of severity of hemophilia could qualify him for Social Security Disability, which in turn would qualify him for Medicaid/Medicare. Then he encouraged us to quit our jobs. Well, not really. Not both of us. He told us that if one of us quit work, our income would drop below the limits for social security. We could draw Social Security Income (SSI) on Nathaniel, around $500.00 monthly. Due to our low income level, Jacob and Caitlin would qualify for Medicaid, as well. We would also qualify for EBT card (colloquially known as "food stamps") and also qualify for other government assistance programs.

So basically, his solution to the financial responsibility that Nathaniel's hemophilia imposes on us is to become dependent on the government for income, health insurance, and food.

Lesley and I discussed this...briefly...very briefly.

Allow me to repeat: We can't have freedom without responsibility. They are two sides of the same coin. When we lose one, we necessarily give up the other.

Lesley and I didn't see the option this social worker presented to us as a means of managing the financial responsibility Nathaniel's treatment imposes. We saw his solution as an abdication of that responsibility. If one of us were to quit work so as to qualify for social security income, Medicaid, and EBT, we would lose the freedom of making decisions about Nathaniel's health care (and in turn Jacob's and Caitlin's). We would also lose the freedom to choose the type of housing in which we live, as we would no longer be able to afford our home. We would also lose the freedom of choosing what types of food we would like to eat. EBT only covers certain types of foods, and with reduced income we would not be able to afford our choices. By giving over responsibility to the government, we lose freedom.

I want to be understood here. In no way is this a criticism of those who truly need government assistance. I've worked in the social services field for several years now, and have helped people obtain Social Security Income (SSI), Social Security Disability Income (SSDI), housing assistance, food stamps, and Medicaid/Medicare. I did it willingly and diligently. After my brother's motorcycle accident, I knew he would not be able to work for an extended period of time, and I helped him get SSDI. I was glad when it was awarded, because I knew he truly needed it.

One thing needs to be understood about these programs, though. Those who utilize these government assistance programs lose a certain level of their freedom. For example, I've seen Medicaid turn down my clients for Hepatitis C treatments because they were over a certain age. By relying on government to pay for their healthcare, they lost the freedom to choose which treatments they received. With housing assistance, I worked with a gentleman who was not able to move into a fairly nice house simply because the house had 3 bedrooms rather than 2. The gentleman moved into a 2 bedroom apartment for the same cost as the 3 bedroom house, and housing authority ended up paying the same amount. The man lost his freedom to choose where he wanted to live because he needed the government to help him with the responsibility of paying for his rent. I worked with people who were put on restrictive diets by their doctors for chronic health conditions like diabetes and high blood pressure. They could not, however, afford the food the diets dictated, because they relied on EBT cards and food pantries for their groceries. The costs of the healthy foods the diets dictated far outstretched the meager amount they were awarded on their EBT card, and the food pantries, which do wonderful service, give out mostly processed foods high in sugar, salt, and other preservatives. They lost the freedom to obtain the types of food that would be good for them because they needed assistance with the responsibility of paying for their groceries.

These clients that I worked with legitimately needed help with meeting their needs for healthcare, shelter and food. The government took the responsibility of helping to provide for these needs, but also took from them the freedom to make choices concerning their healthcare, shelter and food.

Freedom and responsibility: if we give up one, we necessarily give up the other.

What the social worker who visited us proposed was not to help us obtain assistance that we needed. What he proposed was that we put ourselves deliberately into a situation where we need assistance. Then we were to hand the responsibility of meeting our needs over to the government. Lesley and I are not willing to sacrifice that freedom, even if it means taking on more responsibility.

The fact is, Lesley and I are blessed. I have no qualms about admitting that we have done well financially with our work. We are by no stretch of the imagination rich. But we're comfortable. We will need to make some lifestyle changes due to the cost of Nathaniel's treatment. I won't be buying that Harley Davidson by the time I turn 40. I will stop going out to lunch as often as I've been in the habit of doing. Lesley just might need to start buying a few more generic items at the grocery store. With her insurance (which is very good), with our incomes, and with a few minor lifestyle changes, the cost of Nathaniel's treatment will be manageable. We have the FREEDOM TO CHOOSE what sacrifices to make to meet our responsibilities. We won't have a third party (like the government) making the choices for us. We will not need to lose the freedoms we have because we aren't able to afford the responsibility.

Should our situation change in the future, we may need government assistance. Right now, we don't. To put ourselves deliberately into a situation where we would need government assistance would be a violation of my conscience, an abdication of freedom, and immoral.

We are going to apply for disability for Nathaniel, but not because we have to. We are going to apply, knowing that we will not qualify for disability income for him. But that's ok. We don't need it. We will apply in the hopes that he will be granted Medicaid, but, again, not because we need it. Medicaid, in this circumstance, will act as a secondary insurance to our primary insurance policy. It will also give us peace of mind. If anything happens to one of us, and we need Medicaid to become his primary insurance, he will already have been approved. There will not be a lapse in his ongoing treatment.

Lesley and I enjoy the freedoms we have. We know they come with a responsibility, but "Freedom isn't free."