The Medicaid Divide -- Support the DIA!

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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.

Finally, a bill is in Congress that will do something about this if passed.  The Disability Integration Act (DIA) secures and expands the rights outlined in the seminal Americans with Disabilities Act (ADA), to say that when people with disabilities are forced into institutionalization, they lose many of their basic civil rights. 

Direct from the website of the bill: ‘The Disability Integration Act is bipartisan, bicameral legislation to ensure that disabled Americans have a right to live and receive services in their own homes.’ 

It states that all people eligible for Long Term Support Services have a right to make a meaningful choice in how they receive these support services. It also puts responsibility on states to provide community-based solutions for Long Term Support Services,  rather than going straight to institutionalization. 

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. Please join me in signing your support for a bill that will finally make a difference in righting much of what is going on in my life & the lives of so many others.  

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