When one speaks about treatment for TBI, a careful distinction
must be made between optimal systems of care and 'what may be available'
to a specific injured person at a specific time and in a specific
place. It is only in recent years that adequate facilities and services
have grown to meet the need of individuals with TBI, and, therefore,
optimal care is only a newly developed concept.
This recency is largely due to two factors: (1) only in the past few
years have significant numbers of severely injured people survived
the initial trauma, (2) and service providers have become aware that
the needs of people with TBI often demand services significantly different
from those aimed at people with other types of disabilities.
Also in discussing the course of treatment, distinction must be made
between those who experience relatively mild injuries, never being
admitted to the hospital, and those with more serious injuries. In
the case of the former, optimal treatment requires their being followed
by a treatment center. However, this type of follow-up care is rare,
as most emergency rooms or other centers of medical care are not equipped
(i.e., paid) to provide this service.
Follow-up is necessary for two reasons: to provide information about
mild head injury and its possible consequences, particularly as the
individual may have been unable to process such information at the
time of the injury, and to determine if the injured individual needs
further treatment. When difficulties are found, referral to outpatient
treatment is the second component of optimal care for those with mild
injuries. Outpatient services are discussed below.
The New York State Department of Health (DOH) has developed a system
that is viewed as an optimal system of care for individuals who experience
moderate to severe TBI within New York. The Integrated System of Care,
as it is called, includes five components: inpatient rehabilitation
programs, coma recovery programs, extended care programs, outpatient
programs and community support services.
The Integrated System of Care describes what is needed when the patient
is discharged from acute care. The System focuses on rehabilitation and assumes an intact "front end" of care, including components such
as EMS's conveying the injured person to a medical center, emergency
room care, trauma care and/or acute medical care. The System addresses
the needs of individuals in coma (short-term and long-term) and those
who emerge from coma (inpatient care and return to the community).
- Inpatient Rehabilitation Programs
Once the injured person has emerged from coma and is medically
stable, he or she is transferred to an inpatient rehabilitation
program. These programs may be provided within hospitals or nursing
homes and are designed for patients who can benefit from three or
more hours of restorative therapy per day.
Such therapies may include physical therapy, occupational therapy,
speech therapy, cognitive retraining, vocational services and the
like. The New York state DOH projects that the average patient stay
is 85 days.
- Coma Recovery Programs
When the individual with TBI has medically stabilized
but is not yet alert (still at Rancho Level I-III), he or she is
transferred to a coma recovery program, which may be closely linked
with or a part of an inpatient rehabilitation facility. These programs
are designed to meet the special needs of persons in coma.
It is expected that approximately half of these patients reawaken
to the point where they can then benefit from inpatient rehabilitation;
the other half, who remain in coma or who cannot benefit from at
least three hours of inpatient therapy, are transferred to extended
care programs. The DOH estimates that average length of stay is
48 days.
- Extended Care Programs
These programs offer special services for injured individuals
who need supportive care and therapies less intensive than offered
in inpatient rehabilitation programs. These individuals have very
diverse needs, but typically need both therapy and nursing services
to optimize their level of functioning and comfort. These services
are typically offered in nursing homes, which receive enhanced reimbursement
from the State to provide a higher level of service to patients
with TBI.
- Outpatient Programs
These programs respond to the needs of individuals after
discharge from inpatient rehabilitation and also for those with
TBI who have never been hospitalized, but recognize a need for therapy.
Within outpatient services, many options should be available: day
programs, the same therapies as offered within the inpatient program
and coordination of treatment components.
- Community Support Services
A variety of needs confront the individual with TBI after
discharge from inpatient services: safe housing, medical care, financial
support and transportation. He or she may want to explore vocational
options, seek leisure time activities, attend support groups and/or
engage in social activities. Ongoing access to support and information
is essential - it provides the safety net within the Integrated
System of Care.
Most importantly, an Integrated System of Care not only includes
existing community agencies that speak to these needs but also nurtures
the development of community resources to meet needs not
currently addressed by existing agencies. The system needs to look
at what is and what is needed.
