Lucas Camilo

As Congress finally takes off for spring recess this weekend, health care reform has officially become law.  It’s been a long time since we ranted on this blog about the state of our country’s health care system, and lamented the need for profound change in the system, in part based on the struggles that we had with the insurance industry while Lucas was spending his first 3-months of life in the hospital.  Well, reform has finally arrived so we figured we should weigh in on what it means for our family, and beyond.

First, we believe that legislation passed by Congress can and should deal with the inadequacies and injustices of our country’s social system.  Which is to say, we believe that our leaders in government have a responsibility to take action when a large portion of the population is being discriminated against or are not receiving the services necessary to live a healthy life.  Such was the case with the passage of the Americans with Disabilities Act in 1990, a piece of legislation that Lucas has already benefited greatly from (along with millions of other people with disabilities); such was also the case with Medicaid, which since the 1960s has provided millions of poor people with necessary care.

We say this, in part, to starkly distinguish our critiques of the health reform bill from those of the so-called “tea party” movement.  We believe that this bill is insufficient not because it mandates people to buy health insurance but rather because it doesn’t go far enough to ensure that all people in this country will have access to affordable health care services.  The fact that the insurance industry by and large supported the bill is a bad omen, which stems from the failure of the bill to create a public alternative to counter the unfair, high costs set by for-profit insurance companies.

We’ll refrain from writing about other shortcomings of the health care reform legislation, but we will say that we can only hope, perhaps naively, that this is the first step in the process of creating a single-payer system in this country.  In the meantime, we want to point out a few positive aspects of the bill, which include some of the provisions that could benefit Lucas down the line.

Perhaps most importantly is the provision which makes it illegal for insurance companies to deny coverage to children with pre-existing conditions.  Unlike some of the other positive changes in the bill which won’t be implemented until 2014, this provision will go into effect sometime in September.  For now Lucas has coverage through CISPES but this won’t be the case forever, and we’ve worried about what Burke switching jobs and therefore insurance carriers might mean for Lucas.  On a broader scale, this provision protects children with developmental and physical disabilities from being dropped by insurance providers because of an illness or diagnosis, and that is most certainly a good thing.

As another article points out, the health care reform bill also expands coverage for mental health as well as home and community based services.  Interestingly, these are among the things that have been denied by our current primary insurance provider, United Healthcare.  For example, we recently found out that the coverage for some MRIs – which tested Lucas’s early brain development following his brain injury at birth – was reversed by our insurance company, meaning that we may have to pay over a $1000 out of pocket for those tests.  United also denied coverage for Lucas’s home nursing despite the obvious medical necessity of having a tracheostomy and a ventilator.  Only though Health Services for Children with Special Needs – a Medicaid funded program – is Lucas currently able to receive home nursing.  Finally, United refuses to pay for Lucas to see a child development specialist at Children’s because she’s a psychiatrist and not an MD.

So just looking at our own situation it’s clear that there are significant benefits of the new health care legislation, despite all of its shortcomings.  Another reason that we’re happy that it passed, though, is that the failure of some sort of reform would have been interpreted as a victory for Republicans as well as the hateful, ignorant, right-wing “tea-baggers”.  We both had the unfortunate experience of coming face-to-face with the mostly-white, mostly-male protesters with “Don’t tread on me” signs who descended on Washington DC last week and proceeded to yell racist and homophobic slurs at House Democrats, and even spit on one black legislator.  (We tried to think of a joke about the ridiculousness of calling Obama a communist, but some of these people are just too damn scary to laugh at.)

By contrast, a vibrant, hopeful, and much larger group of people came out to the National Mall last Sunday for a huge mobilization in favor of immigrant rights and reform to our current immigration system.  We took turns marching last Sunday and then told Lucas about the colorful signs and chants that we observed.  Our friend Gabe wrote a great article about the rally for the Nation, which emphasizes the way in which the “March for America” so brilliantly contrasted and undermined the ugliness of the Obama-hating tea baggers.  So while we are grateful to those that for who have fought for changes in our system that benefit children with disabilities like Lucas, we are also grateful to those who continue to fight for important steps like REAL reform to our immigration system.  Says Lucas, “hasta la victoria!”