An important and well-known concept for families with children given a diagnosis of cerebral palsy (CP) is Early Intervention! However, lifelong intervention should also be discussed, because although interventions may change based on age, there is management throughout the lifetime of an individual with CP.
This blog will focus on the physical implications and potential need for equipment or Complex Rehabilitation Technology (CRT) for people with CP. The intention of this blog is to be a brief overview of complex rehab technology for individuals with CP, a peek into 24hr positioning, and the importance of Early Intervention. These are topics I wanted to share and are not meant to be comprehensive in any way. If you suspect your child may have CP, or are looking for specific interventions and recommendations, please reach out to your health care provider.
According to the Centers for Disease Control and Prevention, CP is “a group of disorders that affect a person’s ability to move and maintain balance and posture”. This is a very broad definition and the physical, functional, and potentially cognitive implications for an individual may not always be known right away. A known traumatic event before, during, or after birth could be an indication that a child may have CP even if there aren’t overwhelming signs. While it is non-progressive because it usually occurs as a result of some sort of brain injury, there can be secondary complications that if not properly recognized, supported, and potentially treated could cause a decrease in function. These secondary complications can arise anytime during the lifetime of the individual with CP and thus having a clear understanding of these can allow the family, individual, and care team to anticipate, prevent, and plan for some of these.
Understanding what resources and information are available can be very helpful as a family begins their journey. One resource is a classification scale called the Gross Motor Functional Classification Scale, or GMFCS. This scale is based on evaluation parameters looking at sitting and walking that can give a good indication of what functional limitations may be present and what adaptive equipment may be needed throughout a lifetime. The scale rated I – V for CP shows the variance in severity. Level I, considered “mild CP,” may present as an individual with minimal physical impairments and some slight coordination or strength deficits who may need a brace or walking aid during their lifetime. Levels II-III, considered “moderate CP,” will begin to need more adaptive equipment for function and to maintain independence. Levels IV-V, considered “severe CP,” are characterized by severe functional limitations and may require a power wheelchair or a completely dependent mobility base. (See references below for where to locate more information on GMFCS levels)
Having worked in pediatrics for many years, I have many observations about the impact of CRT early in the journey of a child and family with CP. Most of the families and children I worked with had the goal of “walking”, and the word ‘wheelchair’ can be overwhelming and discouraging.
What is not often understood is the physiological cost of walking, and how much effort and fatigue is involved in ambulation with CP. Often our kids with CP may use up so much energy walking from point A to point B, that when they finally make it to their intended destination (could be the playground, or across their own home) they may be too fatigued to complete their desired activity.
It is important to understand that utilizing CRT and other adaptive equipment plays an important role in not only physical health and development but also cognitive and emotional development. There is research available about how early mobility drives cognition, and the opposite of that could be detrimental and lead to learned helplessness or lack of participation.
It is important to work on not only walking but also functional mobility to gain the most independence with activities. This includes the ability to transfer in and out of a device, whether it is a walker, manual wheelchair, or power wheelchair, and to multiple surfaces or locations (bed, toilet, vehicle). Especially important is the ability for independence with activities of daily living (ADLs), especially toileting. Utilizing equipment for proper positioning and mobility along with ADLs from an early age can help set up for independence later in life. In speaking with some older clients whom I’ve worked with in the past, one of the biggest complaints about their entire rehab experience is that not enough time was spent working on functional activities beyond walking, and they got to adulthood or college without having learned basic ADLs for independence.
Early power wheelchair use can be very impactful not only for exploration of the environment and the mobility aspect but the cognitive and developmental aspects as well. However, even if families are emotionally ready for this step, often the environment can be a limiting factor with the inability to transport or accommodate a power wheelchair within a home.
A manual self-propelled wheelchair is another option, and a conscious effort by the seating care team to make the system as lightweight as possible while still providing the necessary support can be a challenge. These challenges are heightened because of available pediatric wheelchairs and funding limitations. The need to “grow” a child’s wheelchair because of course children are always growing, quite often leads children to have to “grow into” a manual wheelchair. This puts the child at a disadvantage in their ability to maneuver in an environment because of poor access to the rear wheels, usually because the wheelchair is far too wide. Also, a child’s manual wheelchair may weigh well over 50% of their body weight, and some even closer to 75 or 95%. This can often cause a young child to ask to be pushed, or complain of fatigue, and overall, just become more dependent with their mobility. This is why properly fitting manual wheelchairs (that can be grown in some way) with the lightest possible configuration (including enhanced materials of titanium and carbon fiber) should be the norm. Unfortunately, in many areas of the world, these are not. (See below for ways to become involved in advocacy in your area.)
Besides CRT for mobility for a person with CP, there are other forms that are important. A 24hr positioning program can help prevent some of the secondary complications. This practice, which has been utilized in Europe for decades, really only became a concept of consideration in North America in the last 15 or so years. 24hr positioning includes consciously providing support (not restrictive in any way) for an individual throughout their entire day and night. Sitting, standing, and lying down. This could require additional equipment, potentially a standing device and positioning equipment for laying down. A good introduction to 24hr postural care management for families can be found here. A deeper dive into professional development on 24h postural care for clinicians is available as well, here.
More education, including advocacy to funding sources that children should have more access to properly fitting equipment even as they grow, is important. Also, children with CP grow up to be adults with CP, and just because they turn 21 doesn’t mean their needs suddenly go away. Unfortunately, in many funding systems, an adult with CP has less access to much needed CRT than a younger child. This is just one of MANY reasons why YOU should become involved in advocacy.
Advocacy can be done by a therapist, parent, or even the child with CP themselves. Advocacy can look different in different parts of the world, but finding advocacy can be a universal activity. If you are interested in becoming involved advocacy, reach out to your child’s equipment provider or treating therapist, they may have information on how to get involved.
In Canada, a start can be this website.
In the USA you can try this website.
With properly prescribed CRT, family/caregiver, involved care team, and advocacy, an individual with CP will hopefully have the tools necessary for not only the most physical independence possible but also the best quality of life.
If you suspect your child may have CP, please reach out to a medical professional in your area.
Early Intervention Resources USA
Early Intervention Resources Canada: Check with your provincial early intervention program.
Lee, B.-H. (2017). Relationship between gross motor function and the function, activity and participation components of the International Classification of functioning in children with spastic cerebral palsy. Journal of Physical Therapy Science, 29(10), 1732–1736. https://doi.org/10.1589/jpts.29.1732
Foundation, C. P. A. R. (n.d.). Gross Motor Function Classification System (GMFCS). Cerebral Palsy Alliance Research Foundation. https://cparf.org/what-is-cerebral-palsy/severity-of-cerebral-palsy/gross-motor-function-classification-system-gmfcs/
Furumasu, J (2018). Considerations When Working with the Pediatric Population. In Lange, M. L. & Minkel, J. (Eds.) Seating and Wheeled Mobility: A Clinical Resource Guide (pp. 281-296) SLACK Incorporated.
Stinson, M., Crawford, S., & Madden, E. (2020). Current clinical practice in 24-hour postural management and the impact on carers and service users with severe neurodisability. British Journal of Occupational Therapy, 84(6), 355–365. https://doi.org/10.1177/0308022620944739
