PABI Plan - The Sarah Jane Brain Project

care of syndromes associated with acquired brain injury. These medical specialties include,
among others: neurology, rehabilitation medicine, urology, gastroenterology, orthopedics,
endocrinology, epileptology, radiology, and neurosurgery. Medical specialists in psychology,
psychiatry, and neuropsychology are also essential components of comprehensive medical care
for individuals during all stages of life following pediatric brain injury and become of critical
importance during this transition to adulthood when so many of the familiar social and
community supports become less available. Finally, therapy services including behavioral
health, counseling, physical therapy, occupational therapy, speech/language therapy, and
nutritional/dietician therapies are also included in this domain. For both those who have high
and lower levels of need, there currently exists at least the provision for comprehensive care
from birth through age 21 with federally-supported programs including Birth to 3, Child Find,
and Special Education. In each state, Department of Health programs for children and families
with special health care needs directs a variety of services and programs in the individual’s home
community that coordinate access to specialty medical services such as epileptology,
neurosurgery, physiatristry, and psychiatry. For families who live a significant distance from a
children’s hospital or a facility that has such specialty pediatric medical personnel, services
actually available may be quite limited and much less comprehensive than is desirable. In such
situations, children who have serious medical needs may experience exacerbations in their
symptoms or their problems before they receive expert evaluations and care at a pediatric facility
with the proper specialty medical expertise in PA/TBI.
Psychiatric/Behavioral Health Services. Across the continuum of ages from infancy through
young adulthood, individuals who have psychological or behavioral health needs related to
acquired brain injury have a very difficult time receiving appropriate services in the community
mental health center system. In the private community as well, there is a significant dearth of
licensed clinical psychologists, child and adult psychiatrists, behavioral specialists, and marriage
and family counselors who have expertise in PA/TBI and the impact of it on psychological
development and behavioral, emotional, and psychiatric syndromes. Finally, there is a
significant lack of day treatment and residential care for children who have severe behavioral
disorders after a PA/TBI. While these children may receive behavioral treatments in school,
specialized facilities for children and young adults who are unable to function in these less
restrictive environments are simply not available.
Therapy services. Through a combination of Department of Health and Special Education
programs, physical therapy, occupational therapy, speech/language therapy, adaptive and
physical education, recreation programs, and social support services are provided for students
who have an Individualized Education Program (IEP) through the semester in which they turn
21. These medical and therapeutic services available in some form to all children in each state
through a combination of Health Department, Birth to 3, Child Find, and Special Education
programs, dwindle or precipitously end at age 21 with the end of school eligibility. Thus, an
individual who may have been receiving individual, group, and consultative services throughout
every school day finds him or herself at age 21 without either personnel or financial resources to
support these treatments. In addition, even if payment for therapeutic specialties is not an issue,
it may be very difficult to find adult practitioners who have any understanding, let alone
expertise, in the long term management of contractures, support of developmental and functional
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