The PABICOP Model of School Reintegration

A Unique and Individualized Approach

By Mary-Ellen Kendall, OT Reg (Ont), Occupational Therapist / School Liaison, Pediatric Acquired Brain Injury Community Outreach Program

Rear view of a little school children raising their hands in the classroomThe Pediatric Acquired Brain Injury Community Outreach Program (PABICOP) is an outreach program for children and youth with acquired brain injury (ABI) serving the Ontario counties of Middlesex, Elgin, Oxford, Huron, and Perth. It is designed to complement services already available in the community. Severity of injury of clients ranges from mild (e.g. Post-Concussion Syndrome) to severe. Regardless of the severity of the injury, the client’s ability to manage at school is usually impacted significantly. When a client is referred to PABICOP, a meeting with a PABICOP Social Worker, School Liaison, and Occupational Therapist is arranged. The client’s symptoms and current challenges are discussed, initial recommendations are made by team members and education is provided to the family about brain injury, both verbally and with a written information packet which is provided to the family. A plan to support the client is made in collaboration with the client and family. A large part of this support is usually centered on supporting the client at school; the PABICOP School Liaison is involved in this process.

Children and youth with ABI experience a wide range of challenges that impact their ability to manage at school. Physical issues include headache (often exacerbated by physical and cognitive activity), fatigue (often compounded by sleep problems), dizziness, vision and balance disturbances, sensitivity to light and noise, and in more severely injured children, spasticity and weakness. Cognitive issues include cognitive fatigue, slower processing of information, impaired attention and memory, difficulties with organization, planning and problem-solving and difficulties with language. Emotional/behavioural issues include impulsivity, hyperactivity, emotional lability, anxiety, depression and difficulties with peers. The above-noted issues impact clients’ ability to attend class for the whole school day, read, copy notes, move through busy environments, sustain attention through a whole class while filtering out irrelevant stimuli, multitask, keep up with workload, and tolerate stimulating environments.

The recommendations made to support PABICOP clients at school are customized to each client. For clients who are unable to tolerate the school environment at all and who can tolerate a very limited amount of cognitive activity, PABICOP School Liaisons advocate for home instruction for a limited time. When they are able to tolerate being at school but only for a limited time, a modified school day is recommended with a gradual increase in time until they are able to tolerate a whole school day. The time it takes each client to return to a full school day is highly variable. For clients who have sensory sensitivities, permission to be excused from music class and noisy assemblies and to leave class five minutes early to avoid noisy hallways may be recommended. Having notes provided is recommended for clients who process information slowly and can’t keep up with the pace of note-taking, who have visual difficulties causing headache due to repeated gaze shifts and who have dizziness when turning their heads. Another common recommendation is that clients have extended deadlines to complete projects and assignments. This accommodation is useful for clients who have cognitive fatigue, difficulty sustaining attention and those who develop headaches with prolonged cognitive activity. The above-noted accommodations are those commonly recommended by PABICOP School Liaisons but it is by no means an inclusive list.

The ways in which school recommendations are shared with school personnel is based on the preference of the client and family. Information is shared via a letter and/or through a school meeting involving a PABICOP School Liaison, the client’s parents, the client (depending on age and preference) and appropriate school personnel. Education of school personnel about ABI is also provided in a more general way by PABICOP Team members in the form of presentations and in-services delivered to individual schools and school boards, thereby building the capacity of educators to support students.

Children and youth with ABI often have difficulties with meeting homework demands due to the above-mentioned challenges of cognitive fatigue, reduced ability to sustain attention and the fact that cognitive activity is often headache-provoking. It takes clients longer to complete cognitive tasks than it did prior to the injury. The PABICOP OT teaches fatigue management strategies to clients who are interested in learning ways to do schoolwork without increasing symptoms; to “work smarter, not harder.” The analogy of a gas tank is often used with these clients: i.e. “Before your injury you had a big gas tank that could get you through your whole day without needing to refuel. Now you have a much smaller gas tank so you have to stop to refuel a lot more often. The way that you refuel is to rest and to eat healthy nutritious food.”

The key principles in managing fatigue are planning, pacing and prioritizing. The planning process is to work from “big picture to small picture.” A monthly calendar is used to write down test and assignment due dates, work, volunteer and extracurricular activities, as well as social and family activities. Larger tasks (e.g. projects) are “chunked” into smaller tasks and time estimates are made for each chunk. The client then decides which step(s) of the bigger jobs will be done each week. A weekly schedule is used to plan each chunk and to plan other academic activities (e.g. nightly homework, tests) as well as the work, volunteer, family, extracurricular and social activities that were entered on the monthly calendar. Consideration is given to spreading the tasks out as evenly as possible throughout the week to maximize what can be accomplished without provoking symptoms.

Daily checklists are used to assist in the pacing of the activities for each day. Pacing refers to alternating activity with rest and periodically switching activities. It is more productive to take short breaks more often instead of working longer and taking longer rests. The client estimates how long they are able to work on a cognitive activity without provoking or increasing symptoms and the time limit for a work period is established at five minutes before the onset of symptoms. For example, if the client can work for 25 minutes before s/he gets a headache, the work period is established as 20 minutes. The tasks that the client has identified for completion that day are then divided into 20-minute chunks. Work chunks are then written on the daily checklist alternating with 10-minute rest chunks, repeating until the tasks identified for that day have been completed. Part of the planning and pacing process is to identify potential rest breaks. It is important to note that rest does not have to mean sleeping or lying down; a rest break can be any activity which is not cognitively demanding. It can be a social activity, like calling a friend, a self-care activity, like taking a shower or applying a coat of nail polish, or simply a non-cognitively demanding activity which has to be done anyway, like putting away laundry or making lunch for the next day.

Prioritizing means deciding which tasks are the most important to do and when they need to be done. Having fatigue means that sometimes difficult decisions must be made about how one’s time and energy is spent. For example, if the client has a part-time job and s/he wants to keep their grades up to get into the university program of their choice, work hours may need to be limited or in some cases put on hold. It may be feasible to attend a birthday party on the weekend, but not to sleep over. In some cases, it means dropping one course so that limited cognitive energy can be effectively focused on fewer activities.

Social functioning in and out of school is often impacted by ABI. Since there are often no visible signs of brain injury, peers are often unaware of the issues clients struggle with. Friends don’t understand why the client doesn’t go to parties, or why s/he gets extra time to do projects. The PABICOP team runs a group for teenage girls with Post-Concussion Syndrome to help with strategies to manage these (and other) issues and perhaps more importantly, to help clients make new social connections with others who “get it.”

In summary, it is important to recognize that children are not “mini adults” and that the demands they face at school are unique. The PABICOP team uses an individualized client-centered multifaceted approach to support clients via individualized recommendations, advocacy, education, individual teaching and group support with the many school-associated challenges they face.