Parenting is hard. There is so much to worry about, then throw in a Complex Medical Condition. Whenever a parent receives a dire diagnosis for their child, their entire world comes crashing down. What does it all mean? How can you understand everything better? Is there anything you can do to improve your child’s condition?
When you hear a phrase such as “medically complex”, the list of questions gets even longer. Suddenly, you have this new unexpected reality. It can feel overwhelming, stressful, and requires a lot of support. It is because of these reasons that we’ve put together an overview of what it means to have a medically complex child and what you need to know about it.
What is a medically complex child?
The term “medically complex” is a vague umbrella term used to describe a wide range of medical conditions that present unique challenges and require special care on an ongoing basis. They are usually rare illnesses that are functionally limiting at best and life-threatening at worst.
They also require long hospital stays, and once discharged to go home, these children 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.
Children who are medically complex are reliant on caregivers and technological devices to do some of the simplest activities of daily living.
What’s the difference between medically complex and medically fragile?
Medically fragile and medically complex children have many things in common: Requiring constant monitoring and assistance even for physiological and basic activities. Medically complex children are also medically fragile, and some parents use the term interchangeably. However, a medically fragile child may have one condition, while medically complex children have several of them.
Diagnosing a Medically Complex Child
Identifying a child as being medically complex is not a straightforward process. It starts by diagnosing the child with several chronic conditions associated with functional limitations and/or mortality. In addition, medical providers consider the degree of dependence on life support equipment, such as ventilators or a tracheostomy.
Other factors that are taken into account include how the diagnosed conditions will affect the child’s long-term ability to eat, digest food, breathe, communicate, reach developmental milestones, develop motor skills, and walk independently. Generally, medically complex children experience the following:
Multiple major medical conditions
Multiple specialists have to provide care
Dependency on high-intensity care
Risk of a life-threatening event
Caring for a Medically Complex Child
Medically complex children require 24/7 monitoring, even more so than regular children. In the blink of an eye, the child may have difficulty breathing or experience a seizure. This is why home health is often a necessity.
Everyone who’s going to be on rotation caring for the child needs to be well-versed in the following:
The child’s medical conditions and how to care for them
The child’s medications, times, and dosage
How to modify the home to accommodate the child’s needs
How to use all of the medical equipment and what to do in the event of a power failure.
Children who are medically complex should also not be exposed to any additional risks. If someone you know has even the slightest indication of having the common cold, keep that person away from your child. The child will also need regular visits from a physical or occupational therapist. When hospitalized, the child will need medical attention from an entire team of pediatric specialists.
Parenting a child with any type of special needs can be overwhelming. It is essential for parents to obtain support for themselves. Caring for a child who’s medically complex means not only providing the usual care and nurturing but also becoming an expert on their child’s diagnosis and care. Being aware of available resources and support groups can help alleviate some of the mental and physical strain.
What is a medically complex child waiver?
The Medically Complex Child Waiver is a program that provides support to families with a loved one who is medically complex or fragile. This is because, despite the fact that only about 1% of children are deemed to be medically complex, they account for a substantial amount of medical services that are administered at hospitals.
The program is designed to ease the financial burden on families of medically complex children. Some of the services included in the program include home health care, private duty nursing, physical therapy, occupational therapy, nutritional counseling, respite care, and medical equipment.
To qualify for a Medically Complex Waiver, a person must meet the following criteria:
Must have been diagnosed by age 20
Must live at home or at least 60 consecutive days in a skilled nursing facility