Walking Alongside Families: How Health Home Care Management Changes Lives

Nineteen-month-old Aubrielle is a medically complex child. Born with a rare genetic condition called glycosylation disorder with hypogammaglobulinemia (MOGS 2), as well as an atrial septal defect, her diagnosis is one that only a handful of people in the world share. She requires a tracheostomy, a gastrostomy tube, a ventilator, and 24-hour, seven-day-a-week care. 

Caring for such a medically fragile child at home is already a herculean task, compounded by the need to coordinate outside appointments, transportation, and medical supply deliveries.

Aubrielle’s mother, Jessica, first learned about Health Home Care Management through Blythedale when she was discharged home with her son, Greyson, in 2021. Also born with a rare genetic condition, Greyson spent time at Blythedale, where Jessica learned how to care for her medically complex child through the Parent and Family Education Program.

Before being discharged home, the family was enrolled in Health Home and assigned a health care manager to assist with day-to-day needs. Each care manager at Blythedale holds a master’s degree in social work, is licensed in New York state, and has extensive knowledge of resources available to medically complex children in local communities. Care managers help families connect the many pieces of a complex care plan so each child can reach his or her full potential.

Jessica remembers the reassurance of being connected before leaving the hospital.

“You’re going to a brand-new world now, and to have someone who could help you organize things or just make you feel a little less stressed was such a good feeling,” she said. Sadly, Greyson passed away in 2022. 

When Aubrielle was born in 2024, Jessica reached out to Health Home to enroll her in the program. At home, she was already caring for Greyson and Aubrielle’s brother, Noah, and working with Simone Ross, LMSW. Although Noah was not a patient at Blythedale, Jessica was able to enroll him in the program to receive additional support once she had left the ICU.

“So now Simone is helping to organize things with two medically fragile children and help me at home,” Jessica said. 

“I have seen Health Home impact this family in so many incredible ways,” Ross said. “I can’t imagine how Jessica was able to do all of this alone. The amount of coordination it takes just to schedule appointments and ensure providers connect with each other is a lot. Caring for a medically fragile child while navigating all of these systems takes incredible strength and resilience.”

Ross serves as a single point of access for the family, acting as a bridge between Jessica and her children’s health care providers. Care managers help navigate health care systems, coordinate with medical supply companies, advocate with insurance providers, schedule specialty appointments, and connect families with community resources, benefits, housing, and Social Security support. They also assist with everyday but essential needs, such as access to food or laundry soap.

In December 2024, Noah passed away and Ross helped Jessica coordinate bereavement and funeral services while she continued caring for Aubrielle at home.

“Jessica’s strength is really admirable,” Ross said. “After the unimaginable loss of Noah, she continued to show incredible resilience and advocacy for Aubrielle. She truly embodies the strength of a parent caring for a medically fragile child.”

As Jessica continues to work with Ross, caring for Aubrielle, she is also now studying to become a respiratory therapist at Westchester Community College. Although respiratory therapy had long interested her, caring for her children ultimately inspired her career path. “I was able to find purpose in my pain,” Christie said. “I want to have my children live on through me.”