New Year, New Home Care Wishes for 2022

2021 has been an incredible year for home care advocates, who continued to discover that meeting with legislators and sharing their personal home care stories did not have to occur in-person only. Embracing an increasingly digital world has been an advantage to many home care clients, caregivers, and families who are home-bound or have mobility issues—or are just plain too busy to be able to travel to and from legislative meetings.

Additionally, in the second year of COVID, many state and federal decision makers started to truly understand why home care makes sense: It keeps vulnerable individuals at home and out of potentially-infectious institutions, and it saves Medicaid programs money by doing so. 2021 was filled with many legislative accomplishments in which lawmakers opted to increase funding for home care programs in light of the ever-persistent challenges home care clients and families continue to face—primarily the difficulty in accessing home care when there is still—despite increasing funding—a workforce shortage.

In-home nurses, home health aides, and other caregivers are the backbone of the home health care industry. Home care would not be possible without these compassionate heroes that help families stay together. And while 2021 was filled with accomplishments, two advocates share their New Year’s hopes and show us why we all must recommit ourselves to home health care advocacy in 2022.

Below, see what home care client Ari A. of North Carolina, and home care mom Jill P. shared with us regarding the challenges they still face, and what they hope to see in the New Year.

Ari A. – Home care client in North Carolina

Ari with nurse Katrina Clagg, LPN.

I can’t tell you how much of a God-send it was to recently learn the fantastic news. NC Governor Cooper signed a budget that raised the Medicaid reimbursement for Private Duty Nursing (PDN) by 13.6%! I know so many people, including myself, who have been struggling to get their shifts covered because of low pay. These struggles go back several years, even before the pandemic. COVID -19 just made the staffing crisis in home care more visible to the public. I’m glad it did. It meant that the NC legislature could see more clearly the dire need, and they acted. Talk about seizing the moment! For this, the NC General Assembly will forever have my gratitude. 

Now that PDN can be more competitive with higher pay, hopefully nurses in other fields will see why we love home care. We love it because it is a protective shield that protects patients like me from the harm that can happen to us each and every day. Just last week my airway became totally blocked all of the sudden. Once again, one of my nurses saved my life. She acted professionally and calmly as she quickly fixed the problem. I wouldn’t have gotten such a fast response anywhere else other than one-on-one care at home. Without it, I certainly would have died. 

Home care to me also means love. I get to spend my life at home, sharing the love of my family, instead of being stuck in a medical facility, or not alive at all. It’s the best Christmas gift that keeps on giving all year round! 

So for all you working in the hospital or as a travel nurse, I have great hopes for 2022. Home care overall is fast becoming the new front line of medical care. More and more people that need complex care are coming home from the hospital and we need you! Simply put, taking care of people in their own home is the best way to advance your skills and help vital members of the community as well. Chronically ill patients like me are ready to welcome you into our homes with open arms. You will find that it is one of the greatest gifts you will receive! 

With Much Thankfulness, 

Aaron “Ari” Anderson 

Jill P. – Maryland mother of home care client Nadiya

Nadiya (front) is able to spend the holidays at home with mom Jill and her family

Nadiya shares a smile in her MD home.

Our 17 year old daughter Nadiya has life threatening seizures and multiple complex disabilities caused by a rare genic disease. She relies on night nursing to keep her safe. It is essential but for the last several weeks we have had only 2 of our 7 nights covered.

It is difficult to find capable, reliable nurses who have the skills to manage complex unpredictable seizures and assist with her activities of daily life. Because we live close to DC, many good nurses choose to work in DC where they can make more money through higher Medicaid reimbursement rates.

My child’s future health and safety as she transitions into adulthood, is reliant on home care. This is a great concern for our family. The pandemic has made this already complicated problem much worse. For 2022, I hope that more state and federal lawmakers continue to see how impactful home care is for families. I hope that more families become involved in advocacy and share their stories so that there is a groundswell for better wages and incentives for these frontline workers.

Home care nurses are an essential support that need to be valued and compensated competitively for their important work. Until that changes Nadiya’s future care is not secure. 

Jill Pelovitz

Parent, Caregiver, and Passionate Advocate

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