When you think of navigators, you may think of someone traveling or exploring new worlds. At Children’s National, we have parent navigators who help other parents figure out the best path of care for their children, especially those with rare or serious illnesses.
Children’s National’s Parent Navigator Program
founded by pediatrician Cara Biddle, MD, MPH
, provides peer-to-peer support to parents of children with special healthcare needs. The program is located at the main hospital, but offers services at other primary care sites including the Community Health Centers at Adams Morgan
, Martin Luther King, Jr. Avenue
, and Good Hope Road.
The parent navigators have children with rare disorders or special needs, and they work with other parents to help them work through challenges that are common for families like theirs.
“Having this type of peer-to-peer support for the family shows that someone is there who understands what families of children with special needs are going through,” says Michelle Jiggetts, MD, MS, MBA, the program administrator for the Children’s National Complex Care Program
and the Parent Navigator Program. “They have walked in their shoes and are sensitive to their needs.” The program employs six full-time parent navigators, two of whom are bilingual. Many families who seek assistance or coaching with their child’s ailments are referred from the Complex Care Program or by primary care physicians to the parent navigators.
Jiggetts also is the liaison for the Maryland Department of Health and Mental Hygiene Office of Genetics and People with Special Healthcare Needs.Helping the Smallest Patients
Beginning on December 1, Children’s National will be evaluating how parent navigators can help families and infants with fragile medical conditions successfully manage the transition from the Neonatal Intensive Care Unit (NICU) to the home.
The NICU review will be part of a $2 million grant from the Patient-Centered Outcomes Research Institute (PCORI)
, headed by Karen Fratantoni, MD, MPH
. Stories of Hope
Children’s National parent navigators have moving stories themselves, and they tap into those personal experiences to help others.
Melissa Gaona has a 4 year old with a rare brain anomaly known as pontine tegmental cap dysplasia, a disorder characterized by delays in development, which includes hearing impairment. Gaona also had a parent navigator herself who helped “encourage me, (and) provided resources where I needed to go, and how to cope.”
Now, she is able to tell other families “I know how it feels.”
Yan Orellana is one of the bilingual navigators in the program and he has a son with autism. Because he is a father, he is able to identify with other dads who may be in a “state of denial” or are unable to express themselves freely. “Fathers find it easy to talk to me about their concerns each day,” Orellana said.
Darcel Jackson’s daughter, who has a rare chromosome anomaly, was initially given a life expectancy of at most, 30 days. Her daughter is now 8.
“As a parent of a special needs child, the journey never ends,” Jackson said. “The goal of the program is to give families the ability to advocate for themselves, understand their child’s needs, and become an active member of their child’s health care team.”Related Links: