PABI Plan - The Sarah Jane Brain Project

electronic health records portal will greatly enhance the experiences and the overall care of the
child/young adult with PA/TBI and their family.
Family Perspective
Families in Rural America dealing with a child/young adult with PA/TBI face obstacles
throughout the continuum of care generally not seen in a more urban setting. Prevention
funding, when it cycles through the system, tends to nearly always focus on families in urban
areas due to the higher population densities, almost completely leaving out those in more
sparsely populated areas. Identification of children/young adults with brain injuries is more
difficult since medical professionals in a rural setting are more generalists than specialists and as
such may not be as quick to identify a PA/TBI compared to their urban counterparts.
Furthermore, there may be little or no choice of getting a second opinion due to the lack of
medical options in rural areas.
Acute care with a moderate to severe PA/TBI poses a significant problem since hospitals in rural
areas are few and far between; even the hospitals that do exist are generally small and illequipped
for more serious cases. Even after the initial emergency response, a child or young
adult in Rural America suspected of having a severe PA/TBI would likely need to be transported
via the quickest possible ambulatory care (airlifted) to a large trauma center 60 or more miles
away. More often than not, family members are not allowed to accompany the child/young adult
during these trips, which further traumatizes the family due to the forced separation. The
already-distraught family must then drive hours to the new location, which creates an additional
stress and a hazard for them as well as others on the road.
Rehabilitative services in a rural setting can be sparse to non-existent, and the ones that do exist
are notoriously difficult to access and slow to be put in place. This is particularly devastating to
the child/young adult with a PA/TBI since brain injury by its very nature requires the quickest
and the most extensive rehabilitation of perhaps any other bodily injury. Services that are put in
place in a rural setting may be cut off too early for children/young adults with PA/TBI who
“seem” to be doing well after a period of time, due to a push from poorly funded agencies to cut
costs and save resources by expending less manpower. With a child/young adult with a PA/TBI,
cutting these services too early can result in the child getting “lost” in the system, which can lead
to him or her doing poorly years down the road and no one linking it to the earlier brain injury.
Telerehabilitation would be particularly helpful in a rural setting for families actively looking for
ways to help their child/young adult at home without having to travel long distances. It could
also serve as a supplement to in-home therapy by a trained professional.
While there is still a general lack of understanding of brain injury amongst most education
professionals regardless of where they live, this is even more exaggerated in Rural America for
many reasons – lack of funding in poor rural areas may lead to less specialized training for
teachers, rural schools are generally not be able to pay salaries competitive to those in rural areas
(thus not attracting higher-quality teachers). Some schools may not even have special education
teachers at all, let alone those trained in how to handle a child or adolescent with PA/TBI.
All family members, including siblings, generally experience more lack of understanding from
the community at large in Rural America, since people in this population group tend to be less
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