Creating balance using the “Five ‘F’s in Childhood Disability”:

Dr. Peter Rosenbaum and Dr. Jan Willem Gorter of CanChild published a paper in Child: Care, Health & Development outlining the ‘F-words’ in childhood disability: function, family, fitness, fun, friends and future. Here is a link to the paper (shared with permission): Rosenbaum & Gorter, F-words paper CCHD 2011. It provides the background for understanding and using these concepts when talking to physicians, therapy professionals, and educators.

Here is a  summary of the F-words paper:

“The 21st century is witnessing a sea change in our thinking about ‘disability’. Nowhere are these developments more apparent than in the field of childhood disability, where traditional biomedical concepts are being incorporated into – but expanded considerably by – new ways of formulating ideas about children, child development, social-ecological forces in the lives of children with chronic conditions and their families, and ‘points of entry’ for professionals to be helpful. In this paper, we have tried to package a set of ideas, grounded in the World Health Organization’s International Classification of Functioning, Disability and Health (the ICF), into a series of what we have called ‘F-words’ in child neurodisability – function, family, fitness, fun, friends and future. We hope this will be an appealing way for people to incorporate these concepts into every aspect of clinical service, research and advocacy regarding disabled children and their families.”-Dr Rosenbaum and Dr. Gorter.

“The F-Words Agreement”-A practical application/exercise for using the F-words agreement with professionals:

Thanks to parent Diane Hunt, we have a template for the practical application of the F-words paper. She called it the F-words agreement: F-Words Agreement – Diane Kay. The agreement is used when making decisions for her son Alfie who has CP. Click here to read her article in the  BLOOM magazine. You will find it beginning on page 20.

The Planner for Parents by Cerebral Palsy Alliance Australia:

Who is the Planner for?
The Planner is for families who would like organize and document their thinking about their child’s future and prepare for the changes that may take place over time. The areas covered include physical health, recreation & leisure, relationships, spirituality, emotional well-being, education  & learning. Cerebral Palsy Alliance collaborated with families in order to determine which topics to cover. They determined that the topics included are typically important to everyone at some point in their lives, regardless of ability, experience or resources. Cerebral Palsy Alliance encourages families to complete this Planner together with your Service Team, so that together you can discuss preparing for the future.

“How to Provide Comfortable Care For______” Template by CP Daily Living:

How many times have you taken your child to see the doctor, therapist, or other professional and wished you could quickly debrief them on how to make your child feel comfortable during his/her visits? Or perhaps someone new is on staff, or is filling in, and you would like them to have this information ahead of time?

I have had too many experiences of feeling awkward and upset because of the way Maya was approached and I assumed the professional would have knowledge that he/she did not. Most people move at such a hurried pace these days that I thought I would create a brief document that our support team and their staff may quickly glance at to learn more about Maya. We have a copy of the template I created along with Maya’s completed sample document. Please feel welcome to share, download and use the document, but remember it is intended for educational purposes only.

The “How to Provide Comfortable Care Template”

Our “How to Provide Comfortable Care to Maya” sample document

Pediatric to Adulthood Transition Guidance Document:

The following is an adolescent transition resource document co-authored by Dr. James Blackman, Medical Director of CPIRF. The intent is for adolescents with cerebral palsy, or their parents, to give these guidelines to the physician early in adolescence and request that he or she address each point. This will raise awareness of the need to devote specific attention to this transition period and support collaborative action between the patient and pediatric physician. It is also important that the transition process be planned for well before aging out of the pediatric age group, at either age 18 or 21.

Understanding the Gross Motor Function Classification System:

“Developed in 1995, the Gross Motor Function Classification System (GMFCS) is a 5 level classification system that describes the gross motor function of children and youth with cerebral palsy on the basis of their self-initiated movement with particular emphasis on sitting, walking, and wheeled mobility. Distinctions between levels are based on functional abilities, the need for assistive technology, including hand-held mobility devices (walkers, crutches, or canes) or wheeled mobility, and to a much lesser extent, quality of movement.”1  The development of the GMFCS was to encourage the use of a more meaningful universal common language when talking about cerebral palsy. At the 2013 AACPDM meeting Dr. Rosenbaum shared that in developing the GMFCS he never made any attempt to describe the “levels” as norms or normality, but was trying to describe patterns of function. He also intended to shift the professional language to talk about what people can do rather than cataloguing their limitations. 

History of the development of the GMFCS:

Severity classifications have never been defined in CP and there are lots of problems using terms such as “mild”, “moderate”, and “severe”.  According to Dr. Rosenbaum, no one ever looked formally at whether doctors and professionals were using the terms consistently, even with the same child. Prior to the development of the GMFCS there were some discussions within the field about assumptions of function based on topography (what parts of the body are affected by cerebral palsy) and type of motor control issues. Although in some cases topography can provide insight into an individual’s function it isn’t always accurate. For instance, diplegia doesn’t necessarily mean “less severe” than quadriplegia. He also noted that many people have misinterpreted the intention of the GMFCS levels as “higher” or “lower”. The developers tried to discourage this thinking by using Roman numerals. Perhaps in the future the Roman numerals will be replaced with some other corresponding symbol.

 

1-from CanChild CA website