Provided by David Satcher, M.D., Ph.D.
Surgeon General of the United States of America
Chapter 3: Children and Mental Health
Support and Assistance for Families
Any parent or guardian of a child with an emotional or
behavioral disorder can testify to the challenging, sometimes overwhelming, task
of caring for and raising such a child. In the past, support from public
agencies has been inadequate and disjointed. Compounding the problem was the
view that parents were partly, if not completely, to blame for their child’s
condition (Friesen & Stephens, 1998). In 1982, a particularly incisive
description of the problems faced by families raising children with emotional or
behavioral disorders was published. It concluded that parents received little
assistance in finding services for their children and were either ignored or
coerced by public agencies; respite and support services to relieve the stress
on parents were unavailable; parents with children needing residential care were
compelled to give up custody to get them placed; and few advocacy efforts were
aimed at relieving their problems (Knitzer, 1982).
Over the past two decades, however, recognition and response to the plight of
families have become increasingly widespread. The role of families has been
redefined as that of a partner in care. Furthermore, there was growing awareness
of the difficulties families faced because services are provided by so many
different public sources. In addition to problems with coordination, parents and
caregivers encountered conflicting requirements, different atmospheres and
expectations, and contradictory messages from system to system, office to
office, and provider to provider (Knitzer, 1982). Although some agencies began
to provide families with training, information, education, and financial
assistance, there was often a gap between what families needed and what agencies
provided. Also, service agencies themselves began to recognize that putting
children into institutions may not have served the child, the family, or the
state and that keeping a child with his or her family could reduce the
ever-growing costs of institutionalization (Stroul, 1993a, 1993b). Emerging
awareness of these foregoing problems galvanized advocacy for a better way to
care for children with emotional and behavioral disorders. Reforms were
instituted in many Federal programs, as discussed later in this section.
According to Knitzer and colleagues (1993), family participation promotes four
changes in the way children are served: increased focus on families; provision
of services in natural settings; greater cultural sensitivity; and a
community-based system of care. Research is accumulating that family
participation improves the process of delivering services and their outcomes.
For example, Koren and coworkers (1997) found that, for children with serious
mental health problems, the more the family participates in planning services,
the better family members feel their children’s needs are being met;
participation in service planning also helps service coordination. Curtis and
Singh (1996) and Thompson and colleagues (1997) also found that family
involvement in services was a determinant of the level of parental empowerment,
that is, how much control parents felt they had over their children’s treatment.
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