Peer Mentor Blog Post: Losing More Than Just Medicaid

This blog post is the most recent in a series of posts by CDPAANYS Peer Mentors that highlight common challenges faced by CDPA users, and how each Peer Mentor personally navigated these situations.

Recently, I was at risk of losing my Medicaid coverage due to a “lack of review”.

I found out about the loss of coverage while checking on my prescriptions at the pharmacy. The pharmacist informed me that their computer system stated, “Patient not Eligible”. Of course, I was upset and extremely anxious when I heard this response from the pharmacist because I had no idea that my coverage was at risk, let alone discontinued.

It is incredible to me that the pharmacy was immediately informed of my ineligibility for Medicaid by punching in a sequence of codes and numbers, whereas I received no formal notification that my Medicaid was at risk. I was very angry and frustrated.

After learning that my Medicaid had lapsed, I informed my managed care plan (MCO) and fiscal intermediary (FI) of the situation. I made several calls to both the MCO and the FI and received no response. When I did hear from the MCO, I was informed that both they and the FI are only allowed to report the problem via email and I had to contact the Human Resources Administration (HRA) on my own. I then decided to take action through voicing my concerns in writing.

As the situation progressed, I was becoming stressed, which was negatively affecting my health. There were so many thoughts going through my mind. I was worried constantly about how this situation would resolve itself. I was concerned about what was going to happen to me now that my Medicaid had lapsed.

Not having Medicaid had a ripple effect for me across the board. The HRA had literally “pulled the plug” so to speak, without so much as a consideration of what the termination would mean for me in the long-term.

No Medicaid coverage could have meant that I was unable to continue on the Consumer Directed Personal Assistance Program (CDPAP). Without CDPAP, I could not get out of bed in the morning since not having Medicaid would mean that my personal assistants would not be available to assist me with my activities of daily living. Because of the lapse in Medicaid coverage, my PA’s were put at risk of not being paid, or even being unable to continue employment.

Being without Medicaid also meant that I would not get the services from the MCO and FI that I have relied on for more than a decade. The MCO and FI have been an integral part of my life, assisting me in maintaining my health in order for me to live my life independently.

There was also a risk to my livelihood. Not having an active case with Medicaid would mean I could no longer participate in the Consumer Directed Personal Assistance Program, which is a requirement of my employment as a Peer Mentor with the Consumer Directed Personal Assistance Association of New York State. That inability to do my job would have a negative effect on many consumers and designated representatives with whom I have an established peer mentoring relationship.

Living my life as independently as possible and working were both directly affected due to the fact that the services I receive and the work I do are all connected to my maintaining Medicaid coverage.

Fortunately, my Medicaid coverage was restored with minimal interruption. This experience has re-enforced that I am my own best friend and the best person to advocate for my rights in an appropriate and informed manner.




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