Dozens of patients and their families recently attended the 2nd Annual Complex Care Clinic Resource Fair, held at Texas Children’s Meyer Building. The event is one of several the clinic hosts throughout the year in an effort to build a community for families with children who have ongoing complex care needs.
“Medically complex children are the sun around which their entire family orbits, and it can be frustrating to see how alone and isolated these families feel,” said Amanda Harris, a medical social worker at the clinic and one of the event’s organizers. “Aside from providing helpful resources, we wanted to create an opportunity to just let these families – including siblings and grandparents – be around other people who are facing similar situations and to see that there are other people just like them.”
There were activities, such as face-painting, and canvases were set up for families and patients to create original artwork for display in the clinic. Children also had an opportunity to pet and interact with ponies that were provided by SIRE (Self-improvement through Riding Education), a local occupational therapy group that specializes in equine therapy.
There were numerous community partners present, including a school advocacy group to answer parents’ questions and offer advice on how to make requests for special accommodations at school, as well as the Deaf-Blind Multihandicapped Association of Texas, a group that advocates and intervenes for patients with co-occurring symptoms to help improve their quality of life.
Families also had access to internal resources, such as Texas Children’s Medical-Legal Partnership, a collaboration between Texas Children’s Hospital and Houston Volunteer Lawyers that provides low-income patient families with free legal advice and representation. There were also representatives present from Texas Children’s Autism Center and Developmental Pediatrics to talk about resources and services available, as there is often overlap between these patient populations.
About Texas Children’s Complex Care Clinic
The dedicated team of experts in the Complex Care Clinic provides comprehensive, high-quality care for nearly 1,200 of Texas Children’s most medically complex patients. These patients include:
- Former premature infants
- Children with complex seizure disorders
- Patients with technology needs, such as tracheostomies or gastrostomy tubes
- Congenital heart disease patients
- Patients suffering from rare genetic or neuromuscular disorders
“There are so many wonderful stories people hear about the miracles that happen every day in our pediatric or neonatal intensive care units, but a lot of people might not realize those stories don’t always end when the patient is discharged,” said Dr. Heather Moore, clinic chief. “For the patients we see, that’s just the beginning of the journey, and they’re going to need ongoing, highly coordinated care.”
The clinic – located at the Texas Medical Center campus and West Campus – is a true one-stop shop for patients and families, functioning as the primary care physician (PCP) office for well visits and touch point visits for proactive preventive care. The clinic also provides all urgent care needs. In an effort to reduce emergency room visits and hospitalizations among this vulnerable population, experts are available to assist families 24/7, and calls go directly to an on-call physician or nurse practitioner.
The full team includes:
- Four physician PCPs and three nurse practitioner PCPs
- Two masters-level medical social workers who remove barriers around transportation needs, housing, food insecurity, guardianship issues, transitioning to adult care, as well as providing assistance in instances of child or domestic abuse
- Masters-level clinical dietitians embedded within the clinic who manage tube feeding regimens and oral feeding diets, while also assisting clinic providers to ensure access for patients who need enteral supplies and feeding therapies
- Four clinical nurses, who triage patients for medical needs via triage line, change gastrostomy tubes and place nasogastric tubes, administer immunizations, suction and escort to the Emergency Center if necessary
- A child and adolescent psychiatrist, providing both behavioral health and family therapy
- A care coordination team comprising six nursing coordinators and six patient navigators (an administrative support role) that interfaces with specialists, therapists, insurance carriers, and medical supply and home nursing companies, and others to help streamline care and remove gaps or redundancies
There are plans to add new staff in the near future, including additional PCPs, a dedicated hospitalist and Physical Medicine and Rehabilitation doctors. A planned expansion to The Woodlands is also in the preliminary phases.
“Many of our patients have special transport needs and it takes a tremendous amount of effort to get around,” said Moore. “We’re trying to provide everything our families need in one place that’s closer to home, while also reducing any gaps in care. Our goal is to provide the most comprehensive care available and to make life easier for them.”