On a sunny November day, Nelly Madore, a single mother of two, recounts the specialists she has taken her children to in the last couple of months: oral surgeon, dentist, cardiologist, and pediatrician. The list goes on.
“Every day there is a different challenge, a new challenge” she said.
On this day, many children may have taken advantage of the warm November weather to visit the playground, or walk outside. Nelly said she and her daughter Natalie were happy to be at home, because a good day is one without doctor visits. And Nelly admits this week has been a relatively good one.
Still, those visits are a necessary and important part of their family’s lives. Natalie, 12, has CHARGE syndrome, a rare genetic pattern of birth defects that involve extensive medical and physical difficulties. For Natalie, it means she was born with a host of serious medical problems, including visual impairment and hearing loss.
“I am more than her mother. I am her maid, her nurse. Her voice,” Nelly says.
She is employed through a program that pays her to be her daughter’s certified nurse’s aide. This has allowed Nelly to care for Natalie and her son, 9-year-old Morris. He was diagnosed at age 3 with autism spectrum disorder, a complex developmental disability that causes problems with social interaction and communication. He too, has challenging medical and developmental issues.
Dressed in warm footed pajamas, Natalie giggles mischievously as she guides visiting nurses around the house, sitting on their laps or holding hands. One of the nurses is Stacy Sloan, program manager of the Health Care Program (HCP) for Children with Special Needs at El Paso County Public Health. She has worked with the family for 10 years, helping them to navigate the maze of health care resources.
“We help them with coordination of care between the medical and the school systems,” Stacy said. “Sometimes there is no communication between the two, and for families like this with complex issues, that communication is paramount.”
She has helped guide the family since Natalie was just a toddler, who doctors predicted would never walk. With the help of Stacy and Public Health nurses, Nelly said she has been able to find both children the appropriate medical care, and has thrived despite personal setbacks, and successfully supports and cares for her family.
“Public health nurses have helped us in so many ways,” she said.
Today, Natalie walks without assistance, and the tube that was once in her trachea has been removed. But new, different challenges are looming, and it worries her mother.
The benefit of working with the HCP program and their public health nurses is that Nelly is not alone in finding specialists to care for the complex and emerging needs of both children.
Stacy and her staff help families find appropriate specialty doctors, and connect them to new resources or programs that could benefit families. Public Health nurses also reach out to support groups if needed, and are the calming voice on the phone when road blocks are encountered within the health care system.
Stacy and her staff include two full-time nurses and a registered dietician. Also called care coordinators, they give referrals for medical and developmental services and information, promote independence, provide education and guidance to families about coordinating health care, help families learn about options to help pay for health care, and more.
Currently, the HCP program at El Paso County Public Health serves 77 children. HCP is a federally funded, state program for families, providers, and community partners. Families typically learn about the program through a primary care physician, a school, hospital, early intervention program, or the Women, Infants, and Children (WIC) program.
“The challenges these families are facing are tremendous. We’re there to help them make sure the children – and their families as a whole – can thrive,” Stacy said.
Learn more about HCP at www.elpasocountyhealth.org or call (719) 578-3199.