PABI Plan - The Sarah Jane Brain Project

While there are often significant improvements in mobility and self-care during this time, the
cognitive, behavioral, emotional, and learning challenges often persist and worsen, and can
become lifelong struggles. Families need to receive a great deal of information and training
during this time, but they are in various stages of grieving and acceptance and so require
persistent education regarding the ongoing needs of the patient after discharge. Supportive
services for families are essential during this time for coping with the alteration in the family unit
and are critical to begin to link families to the resources available in their local community.
Additionally, during an inpatient rehabilitation admission, families are trying to balance
maintaining employment, caring for other siblings, and maintaining marriages and relationships.
Often the stressors brought on by the profound shift in family dynamic that occurs after acquired
brain injury results in divorce, depression, and substance abuse, among others, further disrupting
family units.
As well, children/young adults who have been discharged home and are later able to participate
in more aggressive rehabilitation would often benefit from an inpatient rehabilitation admission
for further treatment, but access to these services is almost always severely restricted or denied.
Currently, once a child/young adult is discharged from inpatient rehabilitation, families often
have difficulty obtaining appropriate outpatient therapy or school-based services in their local
communities due to the limited number of pediatric-trained specialists and lack of funding. The
physical needs and therapies of a child/young adult in the first six months after discharge are
often met, but the psychosocial, emotional, educational, and behavioral needs start to become
apparent at about six to nine months after the injury, at a time when parents and teachers think
the child/young adult is recovered, because s/he looks fine physically.
Thus, the immense attention to education of the family and intensity of therapy services received
by the patient immediately after the brain injury during inpatient rehabilitation is met with a
resounding lack of education and resources in the local community after discharge, resulting in
significant and ongoing frustration for patients and families, and significant worsening of the
child/young adult’s functional status.
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