Treating CP: the options available and the cost for families
A glance at the difference between traditional and alternative treatments for CP, and the struggles families face funding both
For those diagnosed with cerebral palsy (CP), no two journeys look alike. As the National Institute of Neurological Disorders and Stroke (NINDS) explains, “the symptoms of CP differ in type and severity from one person to the next, and may even change in an individual over time.”
No two people experience the disorder in the same way, meaning no two patients receive the same types or amount of treatment, though choices for treatment generally boil down to some combination of traditional treatment options (which include physical therapy, occupational therapy and speech and language therapy) or an alternative therapy, such as conductive education.
In Alberta, only traditional treatment options are covered under Family Support for Children with Disabilities (FSCD), the main provincial source of funding for families dealing with CP, meaning those who might be interested in trying an alternative therapy are forced to make sacrifices and find unique ways to use the funds available to them to access these other programs.
Traditional Treatment Options
Although CP can’t be cured, choosing the right treatment is crucial because a good regimen can greatly improve a child’s quality of life. And, as NINDS writes on its website, “In general, the earlier treatment begins, the better chance children have of overcoming developmental disabilities or learning new ways to accomplish the tasks that challenge them...many children go on to enjoy near-normal adult lives if their disabilities are properly managed.”
The traditional treatment route for those dealing with CP is some combination of physical therapy, occupational therapy, recreation therapy and speech and language therapy.
Physical therapy is considered one of the most important parts of CP treatment and usually begins very soon after diagnosis.
According to cerebralpalsy.org, “those with cerebral palsy experience mobility, function, posture and balance challenges of varying degrees and physical therapy — which focuses on basic mobility such as standing, walking, climbing stairs, reaching or operating a wheelchair — is a key element in the multidisciplinary approach to increasing a child’s mobility.”
Essentially, the goal of physical therapy for CP patients is to improve their gross motor skills.
Occupational therapy, on the other hand, helps patients become as high-functioning as possible during their day-to-day lives.
Finally, speech and language therapy, most obviously, is meant to help a child improve their ability to speak, but can also help with swallowing disorders and even helping a patient learn new ways to communicate, such as through sign language or special communication devices, should they be unable to speak at all.
“A trained therapist will guide the individual in adapting, compensating, and achieving maximum function levels,” writes cerebralpalsy.org. “They take into account physical functioning abilities and limitations, cognitive functioning levels (i.e. reasoning and processing skills), emotional needs and desires, and ability and willingness to adapt and compensate.”
Conductive Education
In Alberta, families who apply for FSCD funding are provided with a list of “established practices” for working with children with disabilities, which is essentially their guide to the treatment options that will be covered by FSCD funding.
For a service to be included in the FSCD Specialized Services Practices and Approaches document and therefore be covered by FSCD funding, the Government of Alberta says that the services must be “based on established rehabilitative practices, strategies and approaches that are reasonable, least intrusive and demonstrated to be effective.”
Some treatment options not included on the current approved practices and approaches list include alternative therapies like conductive education, which is offered by Families of Alberta for Conductive Education (FACE) in Calgary.
Conductive education, founded in the 1940s by Hungarian physician Dr. Andras Peto, treats motor disorders like CP in the same way learning disabilities are treated. This means that conductive education is, in fact, not a therapy or a treatment, but instead a task-oriented learning method.
According to cerebralpalsy.org, through conductive education, “individuals with neurological and mobility impairment, like CP, learn to specifically and consciously perform actions that children without such impairment learn through normal life experiences.”
Emiko Pessu participates in a conductive education program at Families of Alberta for Conductice Education (FACE). The program focuses on the mind-body connection, with lots of singing and verbal instructions. Video by Blaise Kemna
This means that patients “cognitively think through the process and emotionally connect to physical tasks to understand how to perform them successfully.
“The focus, for the child, is to learn ways to access information about their environment without modifying the environment. Performed correctly, conductive education elicits spontaneous responses to external stimuli. The program relies on a child’s natural abilities, not corrective, modified or adapted. This in turn allows for a child to develop appropriate strategies within ability to function in various environments.”
As a whole, the program aims to make those with CP a bit more independent. And conductive education has been used to treat any number of neuromotor disorders including, CP, Parkinson’s disease, multiple sclerosis, acquired brain injuries, spina bifida and more.
Funding Challenges
Because conductive education is not currently included in the FSCD Specialized Services Practices and Approaches document, families who want to incorporate this learning method into their child’s treatment plan must take it upon themselves to find the funding necessary for their child to attend.
Currently, most parents choose to use their respite funds, provided to them by FSCD, to cover the costs of these conductive education programs. Respite funds are typically intended to be used on childcare that allows caregivers (parents) to take a break from taking care of their child with special needs, as an acknowledgement that caring for that child can be more demanding and exhausting than caring for one without those needs.
“If you need to go grocery shopping and you don’t want to take your child with you, that’s what respite is for,” says Emily Jackson, a social worker and mother of a child with CP. “If you want to go out with your girlfriends or you have a school play and you don’t want to take the child that has a disability, that’s what respite is for.”
Though treatment and therapies are not typically what respite funds are meant to be spent on, the Government of Alberta allows parents to allocate these funds to conductive education, as the program does not require parents to be involved, and keeps children out of the home for hours at a time.
And while parents say it’s a positive that respite funds can be used this way, they do stress that not all families are entitled to the same amount of respite — as it varies throughout a child’s life and from family to family — and it does come at the expense of using these funds for their intended purpose.
As Abigail Aldridge, program coordinator and conductor at FACE, explains, parents are having to say “maybe I’m not going to use regular respite so I can have my Saturday date with my husband. I would rather my child go to therapy.”