The term “medical complexity” is an umbrella term used to describe a wide range of medical conditions that present unique challenges and require special care on an ongoing basis. Medically complex conditions are usually rare illnesses that are functionally limiting and are sometimes life-threatening.
Children with medical complexity (CMC) have multiple significant chronic health problems, functional limitations, and high health care needs. They are reliant on caregivers and technological devices to do some of the simplest activities of daily living.
They also require long hospital stays, and once discharged to go home, they are likely to need recurring and extended hospitalizations. In addition, when they are not hospitalized, medically complex children still require extensive home care, often through skilled nursing.
Typically, these conditions include:
- Congenital disorders
- Functional impairment
- Severe neurological conditions
- Developmental disabilities
- Developmental delays
What is the Difference Between Medically Complex and Medically Fragile?
Medically complex and medically fragile are two similar medical terms that are often used interchangeably by parents and caregivers. The biggest differentiating factor between the two terms is that medically fragile generally refers to a child with one diagnosed condition, while medically complex generally refers to a child with multiple conditions. The American Academy of Pediatric’s 2016 clinical report defines children with medical complexity as “those who have medical and/or behavioral conditions that impact two or more body systems, have high utilization rates and needs for healthcare services, with technological assistance or dependence.” Both medically fragile and medically complex children require specialized care for medical conditions that affect their daily lives, and both require constant monitoring and assistance for physiological and basic activities.
Diagnosing a Child with Medical Complexity
Diagnosing a child with medical complexity is not a fast process. It begins with accurately diagnosing multiple, severe chronic conditions which a) limit the child’s ability to function, and b) bring a higher mortality risk. Healthcare professionals take the child’s degree of dependence on life support equipment into account. They also evaluate how the child’s diagnosed conditions affect their ability to eat, digest, breathe, communicate, achieve developmental milestones, develop motor skills, or move independently.
Children with medical complexity usually meet the following criteria:
- Diagnosed with major medical conditions
- Require multiple specialists to provide care
- Depend upon high-intensity care
- Increased risk of a life-threatening event
Caring for a Child with Medical Complexity
Caring for a child with medical complexity means not only providing the usual care and nurturing, but also becoming an expert on the child’s diagnoses and care. Medically complex children are reliant on caregivers and technological devices to do some of the simplest daily living activities.
Caregivers’ support systems will include a robust medical team, as well as other parents who have medically complex children. One recent study indicated medically complex children are treated by an average of thirteen physicians and six sub-specialists.
A medically complex child’s healthcare team may include:
- Multiple physicians
- Multiple sub-specialists
- Durable Medical Equipment
- Prescribed Pediatric Extended Care
- Outpatient Pediatric Therapy
- Pediatric Medical Group Home
- Pediatric Private Duty Nursing
Parents of children with fragile, medically complex disabilities are expected to provide the same level of care that intensive care units provide, but they’re expected to do it in the home environment. For this reason, parents and caregivers of a child with medical complexity will benefit from staying as organized as possible.
Families caring for a child with medical complexity provide not only the usual care and nurturing, but often also become experts on their child’s diagnoses and care. Community resources, national and federal resources, and support groups can help alleviate some of the mental and physical strain. For those who meet criteria, waiver programs may offer some relief via subsidized home health, private nursing, PT, OT, nutritional counseling, respite care and equipment.
To search for a waiver in your area, visit www.kidswaivers.org, or explore this list of Medicaid waivers, which are maintained by Medicaid and can be searched by state and type. The American Academy of Pediatrics also provides a list of community and national resources.
