Disability vs. Medical Complexity
Word of the Week #1
In the medical parenthood community, you will often see the terms “disability” and “medically complex,” and it can be easy to assume that these terms are one in the same. However, there are differences between the two. Not everyone with a disability or multiple disabilities will be considered medically complex. Additionally, a parent whose child is disabled but does not have medical complexities doesn’t necessarily have an “easier” road to navigate than a parent whose child is medically complex. These terms are simply descriptors that allow for a better understanding of a child’s needs and the needs of their caregivers.
WHAT DOES IT MEAN TO HAVE A DISABILITY OR TO BE DISABLED?
The word “disability” is defined as “any condition of the body or mind (impairment) that makes it more difficult for the person with the condition to do certain activities (activity limitation) and interact with the world around them (participation restrictions)” (CDC, 2020).
Disabilities are not always physical disabilities or “visible” disabilities. However, a disability does always three primary characteristics or dimensions, according to the WHO: impairment, activity limitation, and participation restrictions. This means that a disability always impacts a person’s ability to complete a task or action, limits their involvement with the world around them or their daily life, and does so due to structural or functional limitations of the body or mind (CDC, 2020).
As an example, my daughter, Marsaili, is blind. This means that she has nearly complete vision loss (impairment). This visual deficit prevents her from being able to see (activity limitation) and makes it difficult for her to engage in age appropriate play or navigate her environment safely (participation restriction).
Disabilities are sometimes identified at birth, or they may be identified later on as a child grows and develops. They may be progressive in nature or they may not. Each person with a disability is unique, and they have a wide variety of needs.
WHAT DOES IT MEAN TO HAVE MEDICAL COMPLEXITIES OR TO BE MEDICALLY COMPLEX?
The term “medically complex” refers to patients who “have multiple significant chronic health problems that affect multiple organ systems and result in functional limitations, high health care need or utilization, and often the need for or use of medical technology” (Kuo et al., 2016). These child often have multiple disabilities, which is why we say that a child with a disability is not always considered medically complex.
I’ll use Marsaili’s story again to better illustrate this concept. Marsaili’s primary underlying diagnosis is Lissencephaly. This is a terminal neurological condition. However, she has intractable epilepsy (seizures which cannot be controlled by medication), as well as chronic health conditions related to seven other body systems. She requires specialized help from a complex team of physicians from a wide variety of specialities, as well as multiple types of specialized equipment to maximize her quality of life. Some of the equipment we use at home includes:
supplemental oxygen
a feeding pump/tube
a BiPAP machine
portable suction machine
a chest physiotherapy vest.
As she gets older, Marsaili will require specialized equipment for her mobility, such as a wheelchair, stander, bath seat, etc. The care Marsaili needs is complex.
The level of complex care and the significant impact that illnesses can have on children like Marsaili is one of the many reasons why parents of medically complex children often do not like to use the term “special needs” when referencing the care they require. The term “special needs” often does not shed light on the exact nature of their health conditions or why they may require more attention than many other children with disabilities.
DIFFERENT DEFINITIONS, EQUALLY DESERVING OF LOVE
Again, differentiating between the terms “disability” and “medically complex” is not done to imply that children who aren’t medically complex don’t require specialized care or attention. This isn’t a comparison game or a means of stating that one journey is more challenging than another. These definitions simply matter so that children receive the care, love, attention, and respect they deserve. Each child deserves to have their specific needs considered so that they can thrive and interact with the world in their own unique way.
THE WHY BEHIND “WORD OF THE WEEK”
Parenting children with disabilities and/or medical complexities can be an overwhelming journey. The children we are blessed to parent are miraculously strong, and they are a joy to love. However, the joy and love we experience is experienced in tandem with an incredible amount of stress on a daily basis.
Each day, parents are faced with an endless number of decisions they have to make. When you are a parent of a child with disabilities and/or medical complexities, though, the weight of these decisions often sits more heavily on your shoulders. Why? Because the decisions being made directly impact the very specialized care your child needs to thrive.
My name is Hillary. I am a licensed physical therapist with a doctorate level degree and multiple years of experience working in developmental pediatrics. For years I worked with children with variety of medical complexities, disabilities, and delays in their development and gross motor skills. Shortly after leaving the world of physical therapy, I found out that I was pregnant with our second child, and several months later, I discovered our daughter had many complications.
Our daughter, Marsaili, has Lissencephaly - a rare, terminal neurological disorder characterized by a reduction or absence of folds and grooves in the brain. Even with the background and knowledge that I have from my work as a physical therapist, this road, these decisions, and the amount of information we have to handle on a daily basis is overwhelming. It’s exhausting.
While medical providers often do the best they can to educate, many parents and caregivers still struggle to fully understand the intricate details of the child’s care. This isn’t necessarily because they are incapable of understanding. It may just be because they don’t know what questions to ask or what to advocate for when they are overwhelmed with a million other things. Sometimes you simply don’t know what you don’t know.
That’s what this section of my blog is all about - breaking down parts of this world into easy-to-understand, digestible pieces. It’s about making conversations like this feel like a cup of coffee with a friend (even when the topics discussed are a little heavier). It’s about making you feel like the amazing caregiver that you are - no matter what your educational background is - because you and your child deserve to understand the pieces of the puzzle. You deserve a chance to be your child’s best advocate, because that’s exactly what you are.
REFERENCES
Centers for Disease Control and Prevention (CDC). (2020, September 16). Disability and health overview. Centers for Disease Control and Prevention (CDC). https://www.cdc.gov/ncbddd/disabilityandhealth/disability.html#:~:text=What%20is%20disability%3F,around%20them%20(participation%20restrictions).
Kuo, D. Z., & Houtrow, A. J. (2016). Recognition and management of medical complexity. Pediatrics, 138(6). https://doi.org/10.1542/peds.2016-3021
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