The Medicaid Divide
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Since the dawn of our country, we have sought to ensure freedom of movement as a fundamental right. As early as the Declaration of Independence, our nation regarded this freedom as crucial towards maintaining our democracy. However, for people living with disabilities, this freedom of mobility is restricted at present by bureaucracy and ableist health policies.
One of the best and most important resources available to people with disabilities like myself is our country’s Medicaid system. While Medicaid is critical to my survival and the survival of countless others living with a disability, there are big ways in which the administration of Medicaid needs to be improved and expanded to consistently meet the needs of disabled citizens. Our current Medicaid system is funded and administered on a state-by-state basis. What this means is that certain states like New York offer comprehensive coverage and allow people like myself to live with independently and dignity, while in many other states Medicaid is underfunded & unable to meet these basic needs.
In 2005, I was diagnosed with multiple sclerosis in New York. It just so happened that I was located in the state that was ranked #1 for support services for people with disabilities on Medicaid. I quickly learned that this was not the case for everyone when, years later, my son Jase’s mother moved him from New York to Texas. When I went to Texas to explore their healthcare services, I learned that they are ranked the lowest for Medicaid services for their disabled population. This means that I am unable to live independently in Texas and would be confined to a state-run nursing home. Studies have repeatedly shown the adverse psychological and physical effects of living in a nursing home. Therefore, the only freedom I have in this situation is the choice between catalyzing the effects of my condition in a nursing home so I can see my son, or living hours apart. My story may be tragic, but it is not unique. These inconsistencies split up our families, impede us from employment opportunities, and deprive us of our right to the pursuit of happiness. The effects of this can be seen by talking to any person with a disability that has attempted to move or travel across state lines, and calls into question the freedom of movement entitled to our citizens as a basic and fundamental right. In essence, our current system has created the situation that people with disabilities are trapped within their state of residency.
It is time that we take a stand and uphold the liberties guaranteed to us as citizens of this country. That is why I am asking the citizens of America to join me in demanding that amendments be made to existing healthcare and/or anti-discrimination legislation which will ensure the free movement of people with disabilities. The success of this movement will open up a whole new world of possibility for people with disabilities. It will allow us a mobility that will fundamentally change the potential for each individual currently being held back by inadequate access to health care and loss of one’s ability to be mobile. We will create a generation of people with disabilities that are allowed to thrive, and not simply survive.
Every day that our current state of affairs continues is another day that I cannot be with my son. I will do whatever it takes to bring him back into my life, and regardless of the outcome, I will not give up. I might not live long enough to see this policy changed. However, I have faith and take comfort in the fact that the next generation of disabled activists will pick up the mantle. Though my health is deteriorating, I will continue to fight for myself, my community, and for Jase so that hopefully I will be among the last generation that lived with this grave, destructive injustice.
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