Health Crisis and Financial Destruction
By Jeffrey Lester - Aug 22nd, 2007 at 4:45 pm EDT
With last week's news out of Kansas City, where an apparently somewhat wealthy husband felt compelled to throw his disabled and dying wife off of their 4th story balcony because of the financial devastation caused by his wife's increasingly debilitating condition. While this was an extreme response and obviously an excuse for a much deeper underlying problem, it highlights a larger issue for families coping with many different debilitating conditions such as the many muscular dystrophies like ALS which I have, Multiple Sclerosis, quadriplegia and Alzheimer's. This is a horrific side effect that most families who have a debilitating condition enter their lives. The system is setup in such a way where families either have to choose between their financial destruction or the destruction of their family unit. This occurs regardless of proper planning (i.e. health insurance and having an effective savings plan) since unless the sick family member has their own private health insurance (a rare occurrence) the family will be forced into the public system where unless you are already poor the system will start sucking your family finances dry. For families facing extended disease processes of six months or more especially for diseases or accidents that lead to a severe disability, our families quickly start seeing all savings and even our homes lost to care for the increasingly disabled family member with the very governmental systems set up to protect us being the most complicit in our financial destruction (the thriftier someone is just means they have more to lose). When faced with this extra and extremely unfair side effect of having an ill family member, they are faced with one of three choices: destroy our family unit and institutionalize the disabled family member; stand by the disabled family member and watch helplessly as our family finances are stolen from us legally; and finally, the ultimate sacrifice by the disabled family member, choosing death over living because of the mounting stress, guilt and even desire we overtly or subtlety feel from other family members over the destruction of the family's financial security. This is a travesty in the most stark terms since at a time when a family needs every bit of strength they can muster to take on this unfortunate situation, they're instead torn apart by this evil financial destruction. In this great of a country, this is not only an unacceptable reality but it is pox on the very soul of this country when billion dollar corporations are given nearly every break they desire yet the families dealing with a devastating condition in our midst are pushed into our society's shadows and financially punished as a horrible bonus instead of being lifted up and supported by a country which purports to be a compassionate nation.
What can we do? Well I am glad you asked and even if you didn't those of us battling these issues will no longer stay in the shadows and start demanding that things change!!! First, this nation has to stand up and recognize not only the great sacrifice of those who lovingly take on the job of caring for those of us who are not capable to care for ourselves thus keeping us out of institutions but also that the caregiver's selfless act saves our country billions each year that would otherwise go to those same institutions. There are two tangible things to recognize the caregiver's incredible sacrifice: pay them the equivalent to what just one nurse's salary would be if those of us who are disabled were institutionalized, the government will still see a more than substantial savings over the alternative and might entice more people to choose to care for their loved ones at home; defer and even forgive caregiver student loans based on time spent doing this unappreciated service which is no different than the current practice of forgiving the student loans of those 100% disabled. Second, stop the most unscrupulous practice of forcing people into governmental programs and then proceed to demand our financial destruction in order for us to receive the basic medical intervention and assistance we so desperately need. This can be easily achieved by exempting income up to certain limits, exempting home values to certain limits and exempting all retirement accounts to protect those families dealing with severely disabling conditions so we can receive the needed assistance without the destruction of their family financially. Finally, show that this country is truly compassionate by coming up with innovative and revolutionary programs to help our families on a more than a basic level but rather to lift us up to live as normal as possible like: true caregiver respite or assistance programs; reform the vocational rehabilitation system which seems to value a disabled person's possible contribution on the most minimal level but instead have them develop the disabled person's skills to tap this fantastic untapped resource; and finally, reform the archaic rules that require an assistance device be "medically necessary" for them to be purchased but instead utilize a "normalization of life" standard because there are many devices that just sustain life on a medical level but there are other devices which are not currently covered which allow us to truly live.
In a society as advanced, wealthy and claims to be compassionate as ours, overcoming these issues should be no problem and further it should be a measuring stick of our society. Even our founders recognized this by including the phrase in the Declaration of Independence, "We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness." All the families of those of us, who are disabled either by disease or accident, ask is that we have the same chance to pursue the unalienable rights that our founders recognized and our fellow citizens have!!!!!
Your friend in the fight,
Jeff Lester (ragingbear); 40, married w/ 3 daughters (all born AFTER diagnosis)
Dx'd 10/93 and on vent since 12/97
You too can have a fulfilling life by learning to LIVE with ALS!!!