Continuous nursing makes it possible for medically fragile children to live at home with their families.

Connecticut is facing a health care crisis that is unknown to many of its residents. There are more than 400 families whose medically fragile children are living at home with continuous skilled nursing services rather than in a hospital intensive care unit.

Just a decade ago, institutional care was the only way to care for these children with complex medical needs. Thanks to medical advancements, these children can be cared for at home with their families and nursing care. Yet, continuous skilled nursing in the home is being threatened due to abysmally low home health Medicaid rates.

Coco Sellman

Amelia, my 19-year-old, medically fragile stepdaughter, inspired my husband Frank and me to start Allumé Home Care, a Connecticut-licensed and Medicare-accredited home health agency. Amelia’s life and ours have been transformed by this unique, needed service to such an extent that we started a company dedicated to bringing these services to the homes of more patients and families.

Five years later, COVID hit, threatening these services for Amelia and the more than 400 patients receiving home services in CT due to grossly inadequate home health Medicaid rates.

A little about Amelia… she was born 11 weeks early at just 1 pound, 7 ounces. Her twin brother did not survive. Amelia fought to survive through multiple surgeries and a 100-day hospital stay before she could finally go home. As a result of her early birth, Amelia has cerebral palsy and chronic lung disease. She is wheelchair bound, non-verbal and needs oxygen with BiPAP to breathe. She receives respiratory, suctioning and nebulizer treatments every two hours. She is completely dependent on the care of others to survive.

When she was seven years old, her condition declined. She became a frequent flyer to the hospital, spending weeks at a time in the intensive care unit. This is when we learned that Amelia qualified for in-home nursing care, which has transformed both Amelia’s life and ours. Not only have Amelia’s hospital episodes diminished – her health is far better than what doctors predicted.

Amelia has a team of four nurses caring for her around the clock at home. They work in eight-hour shifts with a nursing supervisor overseeing her care under the direction of her team of doctors.

But Amelia is much more than her wheelchair and her medical interventions. She is a bright, beautiful, and engaged young woman who loves going to school, visiting White Memorial, listening to Justin Bieber and baking cakes with her younger sister. She communicates with an iPad and has an infectious laugh. She is a whole person.

Amelia and others like her deserve to have the opportunity to live at home with the support of continuous in-home nursing.

We have been honored to provide this essential service, bringing home more than 75 medically complex patients from the hospital.

When the pandemic hit, our ability to continue to cover the costs of regulatory compliance, procure cost-inflated PPE and recruit and retain nurses has been amputated.

Dollars have flowed into hospitals and skilled nursing facilities; no doubt they’ve needed it. But home health has been left out time and time again. As a result, we are unable to compete for nurses. Before COVID, institutions offered nurses $5-8/hour more than home health could afford. Now a nurse can make a full $10-12/hour more working elsewhere.

We simply cannot compete.

The recent 10% increase in Medicaid funding for skilled nursing facilities is the nail in the coffin for home health. This increase has put access to complex nursing services fully in jeopardy. We cannot hire new nurses and are losing our existing nurses for substantially higher pay elsewhere.

Since November, Allumé and other similar providers (All Pointe, Aveanna, and Elara) have not been able to bring home complex care patients from the hospital.

This doesn’t make financial sense. Patients stuck in the hospital at a cost of $9,000/day should be brought home with in-home nursing care for $1,000/day. For $8,000/day in unnecessary costs per patient, the state can afford to give us a rate increase.

Reimbursement rates in Massachusetts and New Jersey are 20-25% more than our home health nurses here in CT. They are 10% more in Rhode Island.

Increasing home health Medicaid rates will make it possible for companies like mine to continue offering these services.

Coco Sellman is the founder and CEO of Allume Home Care.