Thank You for Keeping Me Home: A Message from an Advocate

North Carolina advocate Ari A. during a trip to Washington, D.C.

We often think of advocacy as sharing our stories, our challenges, and asking for legislative support in addressing those challenges. But advocacy is much more multi-faceted: It’s about building relationships by cultivating legislative connections so that they become home care supporters for life, and it’s certainly about saying Thank You when the support pays off by resulting in a law or policy that is beneficial to the individual and to the home care community at-large.

Below, find a Thank You note written by North Carolina home care recipient and Hearts for Home Care advocate Ari A. Ari has been able to thrive and stay independent at home because of the skilled nursing services he receives under North Carolina’s Medicaid program. Recently, he wrote to Medicaid staff to thank them for resolving a critical issue that enabled him to continue these services. Medicaid staff are committed to improving health and well-being of North Carolinians, and their transactions are often behind the scenes and receive little recognition. Hearts for Home Care applauds Medicaid staff across the country for their commitment to helping individuals stay at home, and we applaud Ari for his sincere thankfulness of their work.

To All I Work with in NC DHHS and Medicaid,

Some of you I’ve known for years and some a short time. Through it all, the one and most important factor that has been consistent has been the capacity to care. Time and time again over the years I have had to get battle ready in order to keep my life-saving services. However, instead having to scale cold-hard hearts, impenetrable like a fortress, you invited me into your hearts. You consistently agreed to provide for my intensive care in my home instead of a medical facility; which essentially would have been leaving me out in the cold to die. Instead of fighting me you have been my allies, always being there for me when I needed you the most.

These truths became ever more apparent a couple weeks ago. For the past two years, my mom and I have been getting things ready to transfer my medications, physical therapy, and supplies to Medicare without de-stabilizing my PDN services under Medicaid. It has been a mind numbing, complicated process. We have been hyper-vigilant not to miss any details that could easily be overlooked. We recently turned in sensitive paperwork to the Department of Social Services (DSS) well before the deadline. On November 30 we spoke with the Director of Policy and Procedures for Medicaid Sandy Terrell about how to safeguard my PDN even more during the transition. Ms. Terrell told Saunja Wilson from PDN to double check if everything was in order by the end of the month. Thank God, Ms. Wilson decided to check right away. The sensitive paperwork we emailed to DSS was present, but hadn’t been pulled up yet even though my caseworker had the paperwork in her email. One of the Supervisors at DSS had also confirmed that we had it turned in. We were told email or fax was equally acceptable for documentation.

The breakdown was that this particular caseworker did not use her email for business and preferred to have documents faxed to her. My caseworker tried to alleviate a little bit of pressure off my mom and I by telling us to ignore the ‘Termination of Medicaid Services’ notice in the mail. Yet, the absolute terror that rose up from the pits of our stomachs when we received the notice was totally indescribable! Despite the paperwork being directly faxed to my caseworker, we still waited for the approval. Thankfully over a week later, the situation was taken over by one of the Supervisors at DSS. She rose to the occasion and kindly brought the matter to a close so that my mom and I could peacefully go on with our lives.

Frighteningly, the bottom line is that I am not exaggerating when I say my life would have been ‘Terminated’ if Saunja Wilson from PDN hadn’t been ‘quick on the draw’ to find the error. If Ms. Wilson had waited to check just two or three days later, I wouldn’t have been able to disregard the Termination notice and my life would have been ruined! I say again, Thank God for my champions in NC government. You always rises up out of the mist to do a heroic save! This is what the rest of America could be and should be as far as healthcare policy.

Frighteningly, the bottom line is that I am not exaggerating when I say my life would have been ‘Terminated’ if Saunja Wilson from PDN hadn’t been ‘quick on the draw’ to find the error. If Ms. Wilson had waited to check just two or three days later, I wouldn’t have been able to disregard the Termination notice and my life would have been ruined! I say again, Thank God for my champions in NC government. You always rises up out of the mist to do a heroic save! This is what the rest of America could be and should be as far as healthcare policy.

All of you keep doing a spectacular job and always keep your focus on the people you serve instead of the numbers, especially as NC transitions to Managed Care. If you ever need my help just let me know anytime!

Sincerely,

Ari A. Charlotte, NC

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