by Steven J. Taylor
Recent years have seen the emergence of new philosophies and approaches to supporting children with developmental disabilities in the community. There is a growing recognition that every child needs a permanent and stable home and family. In line with this, a new priority has been placed on family support services and alternative family placement for children who cannot live with their birth families.
Viewed in the context of current national trends, Project STAR in Pittsburgh, Pennsylvania stands at the forefront of agency efforts to insure children's right to permanent and stable family relationships. Project STAR has demonstrated that children with a range of disabilities can be supported in their birth families or placed in adoptive families.
Project STAR was established in 1985 with funding from the
Pennsylvania Developmental Disabilities Planning Council (DDPC)
as a collaborative project of The Rehabilitation Institute of
Pittsburgh, the Allegheny County Children and Youth Services
agency, and Three Rivers Adoption Council. Project STAR was one
of four projects funded by the DDPC under it "Adoptive Family
Recruitment Objective" for a three-year funding period. Since
1988, when finding from DDPC ended, Project STAR has been funded
through a patchwork of grants, contracts, and other sources.
Consistent with its initial funding, Project STAR was
founded as an adoption agency for children with developmental
disabilities. Project "S.T.A.R." stood for "Specialized Training
for Adoption Readiness." During its first three years, the
project focused on identifying children available for adoption,
recruiting, screening, and training prospective adoptive parents,
and supporting the adoption.
Beginning in 1989, Project STAR's mission gradually
broadened to focus on permanency planning for children with
disabilities. From its start, Project STAR had prided itself on
being a "children's service," rather than a service for adoptive
parents, were viewed as the agency's "clients." The adoption of
permanency planning as a mission was a logical extension of this
focus.
Permanency planning is both a planning process and
philosophy directed toward ensuring each child's right to a
permanent home and stable relationships with one of more adults
(Center on Human Policy, 1987; Taylor, Lakin, & Hill, 1989).
According to the philosophy of permanency planning, children
belong in families and need permanent family relationships.
Permanency planning emphasizes supports to families to enable
them to care for their children, family reunification when
children have been placed out-of-home, and adoption or other
permanent family placements for children who cannot live with
their birth families.
In child welfare, permanency planning is required by the
federal Adoption Assistance and Child Welfare Act of 1980, P.L.
96-272. Few mental retardation, developmental disability, or
other disability agencies in the United States have incorporated
permanency planning into their policies and procedures. The
State of Michigan is a notable exception.
Project STAR has been extremely successful in arranging
adoptions and has demonstrated that caring and loving adoptive
families can be found for children who have been considered
"unadoptable" because of their disabilities. Since its
establishment, Project STAR has placed children with severe
multiple disabilities, autism, emotional disturbance, profound
mental retardation, and severe medical involvement in adoptive
families.
From 1985 until Spring 1992, Project STAR placed 80 children
with disabilities in adoptive families. Among these placements,
there have been few "disruptions," or failed placements.
Depending on how figures are calculated, disruptions range from
three to ten. Project STAR was not involved in post-placement
services for six of these children. Project STAR's adoption
services fall into five broad categories: (1) Permanency
Assessment and Preparation of Child; (2) Family Recruitment and
Preparation; (3) Family and Child Preplacement/Placement; (4)
Post Placement Services; and (5) Post Finalization Services.
Project STAR now defines itself as "Permanency Planning
Advocates of Western Pennsylvania." This phrase has recently
replaced "Specialized Training for Adoption Readiness" on Project
STAR letterhead.
As a philosophy, permanency planning increasingly guides all
of Project STAR's activities. Unlike many adoption agencies,
Project STAR seems to ask, "How can we build or strengthen
permanent and stable family relationships for the child," as
opposed to asking, "How can we find children for adoptive
families (or vice versa)?" The initial step in the adoption
process is a "Permanency Assessment" of the child. There is a
subtle, but important difference between a "Child Assessment," on
the one hand, and a "Permanency Assessment," on the other. A
"Child Assessment" focuses on the characteristics of the child; a
"Permanency Assessment" looks at both the child's characteristics
and existing social relationships and explores a full range of
permanency options, including but not limited to adoption. In
some cases, Project STAR has advocated for permanent foster care
for children living with caring foster families unable to adopt
them, as opposed to severing the relationships by recruiting
adoptive families.
As a set of practices, permanency planning at Project STAR
refers to a range of services as well as planning and advocacy
efforts to achieve permanency for children living out-of-home or
at risk of placement. Project STAR's first permanency planning
efforts were supported by a DDPC grant in 1989; today these
efforts are funded by different grants. The agency's permanency
planning activities fall into four categories.
The first is "family preservation" or efforts to
prevent out-of-home placement. Depending on the family's needs
and circumstances, these efforts take many forms: planning and
coordination of family support services; advocacy for the family
with human services agencies; direct provision of goods or
services; and information, encouragement, and emotional support
to families. We accompanied one staff member to the home of a
new-born with severe disabilities and medical involvements. The
parents were pessimistic about the infant's future and were
considering placement in a private institution; the father, in
particular, rejected the child. The Project STAR staff member
talked honestly, but sympathetically with the parents. She
explained that their image of their child's future was inaccurate
and gave examples of similar children who are living and thriving
in families. While she encouraged them to try to maintain their
child at home, she asked them to consider adoption, rather than
institutional placement. The family placed the child in foster
care for four months, but then as a consequence of Project STAR's
intervention, decided to try to raise their child themselves.
Nearly one year later, the child was still living with the
family.
The second category of permanency planning activities
relates to encouraging a family's involvement with their
children who have been placed out-of-home. For a host of
reasons, families may place their children in institutions,
community living arrangements, or in foster homes. In the field
of developmental disabilities, out-of-home placement often has
signaled an end to the family's relationship with a child.
Project STAR has worked closely with some birth families to
encourage and facilitate their continued relationships with their
children. In the case of one single mother whose daughter
requires nursing care, Project STAR supported the mother's
decision to place the child in a foster home arranged through the
county MH/MR agency. Project STAR offered steady encouragement
to the mother to keep up contact with her daughter, advocated for
the mother with human service agencies, and worked to facilitate
cooperation and open communication between the mother and the
foster mother.
The third category is "family reunification." As
suggested above, placement in the field of developmental
disabilities traditionally has been viewed as terminal event.
Once placed, the child was never expected to return home. For
the vast majority of children with developmental disabilities who
are placed out-of-home, the first option should be reunification
with their families. Project STAR has not only encouraged family
reunification, but helped arrange support services to enable
children to return to their families.
The final category of Project STAR's permanency planning
activities relates to finding other permanent options for
children who cannot or should not be reunited with their
families. For children whose ties with their families have
been broken, adoption is the option of choice. Few children in
the mental health and mental retardation systems are legally free
for adoption, however. Even when families are no longer involved
with children in private institutions and other placements in the
mental health and mental retardation systems, parental rights
have seldom been terminated and children are left in a legal
limbo. Permanent foster care is likely to be the most stable and
permanent option for these children.
Through its permanency planning activities, Project STAR is
currently working with six children. Of these children, Project
STAR is attempting to preserve or reunite the families in four
cases and pursuing adoption, or if parental rights cannot be
terminated, permanent foster care in two cases.
Despite its success, Project STAR has encountered formidable
obstacles in attempting to bring permanency to the lives of
children in Pennsylvania's mental retardation and mental health
systems. As a private agency, Project STAR does not have access
to all children placed in public and private facilities or to
families considering out-of-home placement.
While state agencies in Pennsylvania have supported Project
STAR and funded several adoption and permanency planning
initiatives, permanency planning cannot be treated as a discrete
program or add-on; it is a philosophy and a process that must be
built into the entire system. In Pennsylvania, as in all states,
the realization of permanent homes and families for children with
disabilities will require a fundamental shift in policies and
practices regarding out-of-home placement.
Center on Human Policy. (1987). Families for all
children. Syracuse, NY: Author.
Taylor, S. J., Lakin, K.C., & Hill, B.K. (1981).
Permanency planning for children and youth: Out of home
placement decisions. Exceptional Children, 55(6),
541-549.
For further information on Project STAR and permanency planning
in Pennsylvania, see Taylor,
S. J., Racino, J. A., Walker, P.,
Lutfiyya, Z. M. and Shoultz, B., Permanency Planning for
Children with Developmental Disabilities in Pennsylvania: The
Lessons of Project STAR. (Syracuse, NY Research and
Training Center on Community Integration, Center on Human Policy,
1992), or contact Susan Maczka, Director, Project STAR
(Specialized Training for Adoption Readiness, The Rehabilitation
Institute of Pittsburgh, 6301 Northumberland Street, Pittsburgh,
PA 15217).
Preparation of this article was supported by the
National Institute on Disability and Rehabilitation Research,
U.S. Department of Education for the Research and Training Center
on Community Integration through Cooperative Agreement
#H133B00003-90 awarded to the Center on Human Policy at Syracuse
University. The opinions expressed herein are solely those of
the authors an no endorsement by the U.S. Department of
Education should be inferred.