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Technical Report 7
Family Outcomes in a Growth and Developmental Model
APRIL 1998
The work reported here was supported by Grant No. H02450010, funded by
the Early Education Programs for Children with Disabilities (EEPCD), Office
of Special Education and Rehabilitation Services (OSERS), U.S. Department
of Education. The opinions expressed herein do not necessarily reflect
the position or policy of the U.S. Office of Education, and no official
endorsement by the U.S. Office of Education should be inferred.
Feel free to copy or distribute any part of this report. Please give
credit to the Early Childhood Research Institute on Measuring Growth and
Development.
For more information, contact the Early Childhood Research Institute
at the University of Minnesota, 202 Pattee Hall 150 Pillsbury Drive S.E.,
Minneapolis, MN 55455.
TABLE OF CONTENTS
- Authors/Researchers
- Introduction
- Family Outcomes
- Family Outcomes in a Growth and Development Model
- References
Scott McConnell & Mary McEvoy
Center on Early Education and Development
Institute on Community Integration
University of Minnesota
Judith J. Carta & Charles R. Greenwood
Juniper Gardens Children’s Project
University of Kansas
Ruth Kaminski, Roland H. Good III, & Mark Shinn
Center on Human Development
University of Oregon
with assistance from
James Ysseldyke
National Center on Educational Outcomes
University of Minnesota
Paula Goldberg
PACER, Inc.
Minneapolis, Minnesota
The passage of the Education for All Handicapped Children’s Act
in 1975 was brought about in large part by parents of children with disabilities
and their families. While PL 94-142 did not require that goals be written
specifically for family outcomes, it did outline the requirements for
each child’s Individualized Education Plan (IEP) and required extensive
family involvement and input in the design and evaluation of the IEP.
With the passage of PL 99-457 in 1986, the federal government provided
incentives in each state to develop Individualized Family Service plans
(IFSPs) for each family. Both the spirit and intent of this legislation
was to provide a mechanism for professionals and families to work together
to meet the individual needs of a child.
Beyond the legal imperative, a primary reason for working collaboratively
with families is that the child should be seen as part of a larger “system”
— his or her family. Roberts (1990) has pointed out that by viewing
each child in the context of her family, professionals must consider each
family’s personal style and culture pattern. These, in turn, will
influence the needs and expectations that families have for their children.
Recently, Bailey, McWilliam, Darkes, Hebeler, Simeonsson, Spiker, and
Wagner (1998) presented a discussion about desired family outcomes and
strategies for documenting their attainment. The authors make a strong
case for assessing family outcomes as part of a comprehensive early
intervention program.
McWilliam, Winton, and Crais (1997) have identified a number of questions
that professionals should ask themselves as they evaluate their work with
a family. First, what do families want? It is important to determine
what priorities a family has for a child’s education plan. Does the
family want you to find a “solution” to a problem or do they
wish to be a part of the assessment and intervention process? Does a family
identify needs that are outside of a professional’s particular expertise,
and if so, is she or he prepared to assist the family in accessing other
resources?
A second question is, how are family needs related to family values
and cultural expectations can be answered only by working closely
with a family. Lynch and Hanson (1992) have identified a number of steps
that a professional can take in order to become more culturally competent
and thus have a greater understanding about the diverse family values
and cultural expectations. These include (a) becoming aware of the cultural
groups represented in the communities that you serve; (b) working with
interpreters to fully understand family concerns and priorities; (c) accepting
various levels of family involvement; and (d) using a variety of methods
for obtaining family information including surveys, interviews, and questionnaires.
Finally, professionals must address this question: How can I build
a positive and collaborative relationship with families. McWilliam,
Winton, and Crais (1997) have pointed out that the role of the professional
is not to assess or evaluate families. In fact, professionals and families
must work together to make joint decisions about a child’s education
program.
Professionals generally understand, or at least accept, their responsibility
to assess child outcomes. However, rarely are family outcomes
considered or, much less, assessed. What are family outcomes? How do they
vary from family to family? How can we measure them? In order to emphasize
outcomes for families, as well as children, as a part of our Comprehensive
Assessment Model, we subcontracted with PACER, Inc. to oversee the development
of family outcomes as part of the Institute research activities. As a
first step, PACER conducted a series of interviews with parents of children
with disabilities to determine what they perceive as important family
outcomes. The families identified the following:
- Families will understand the law as it pertains to the IFSP/IEP Process.
- Families will understand basic child development and be able to assess
how their child’s development is progressing.
- Families will understand their child’s disability and know how
to access supports within the community related to that disability.
- Families will be able to identify their needs, including those related
to cultural, linguistic, or disability specific issues.
- Families will be made aware of the /IEP system as soon as a need is
identified and will have information on how to access those services
if desired.
- Families and children will receive services they have identified as
being necessary. These services will be made available in a timely manner.
- Families will perceive themselves as equal and integral members of
the team.
- Families will be confident in their abilities to make choices about
services for their child with a disability.
- Families will be self-advocates.
- Families will understand the differences between the IFSP and the
IEP processes and the resulting implications for service provision.
- Families will feel that their beliefs and values are respected by
other members of the team.
While each of these are important family outcomes, we are interested
in the family outcomes that relate specifically to a families involvement
in their child’s growth and development over time. Thus, as a second
step, ECRI-MGD Investigators, PACER staff, and the ECRI-MGD Professional
Advisory Board discussed the general family outcomes that resulted from
the family interviews. Four outcomes that relate specifically to our primary
focus of measuring child growth and development were selected from the
list. Finally, we incorporated each of these four family outcomes into
our Comprehensive Assessment Model (see attached Figure). A brief discussion
of each of these outcomes and ways to assess them are discussed below.
Clearly, potential family outcomes may range from a family’s overall
satisfaction with early intervention services to a families active participation
in intervention planning. For purposes of this project, our focus is on
the identification and measurement of family outcomes that relate specifically
to a child’s growth and development. Working collaboratively with
PACER Center, we have identified a number of potential family outcomes
that “fit” within our Comprehensive Assessment Model.
- Families will have a basic understanding of child development and
will be able to identify needs for their child, including those related
to cultural, linguistic or disability specific issues. A major component
of ECRI-MGD is the development and measurement of Individual Growth
and Development Indicators (IGDI’s). The process of identifying
IGDI’s begins at the IEP or IFSP planning meeting when general
outcomes are selected. This family outcome could be measured by observing
the level of family participation in meetings over time, family self-evaluations,
or family satisfaction surveys.
- Families will be able to assess how their child’s development
is progressing related to general outcomes identified on the IEP/IFSP.
As professionals implement IGDI Progress monitoring, families should
participate in the monitoring process. Can family’s use the IGDI
measures? Can families use information from the IGDI’s to monitor
their child’s progress? Can families use information from the Exploring
Solutions Assessments to determine potential interventions? This outcome
could be measured by family self-evaluation, family completion of Exploring
Solutions Assessment, family active participation in intervention design,
or family satisfaction measures.
- Families will be confident in their abilities to make choices about
interventions for their child and will be able to implement those interventions
effectively. Once an IGDI has identified a problem and the Exploring
Solutions Assessment has been completed, intervention development occurs.
Families should be active participants in the development and implementation
of interventions. Just as it is critical that different disciplines
collaborate on intervention designs in order to assure consistency it
is also critical that there is consistency between the professionals
and the families in implementing interventions. This does not mean that
an intervention must be applied in the same way in school, home and
community settings. What it does imply is that, as a team the
professionals and family members determine the impact of the child with
disabilities on the daily family routine (Bernheimer, Gallimore, &
Kaufman, 1993) and what adaptations the family is willing to make to
that routine in order to implement an intervention. This outcome can
be assessed by observing family participation during intervention design,
measuring the fidelity of intervention implementation, or family satisfaction
measures.
- Families will feel that their beliefs and values are respected
by other members of their child’s team and will see themselves
as equal and integral members. Throughout our Comprehensive Assessment
Model we have included families as important decision makers. In order
to evaluate their active involvement, we have described three family
outcomes and proposed ways to measure each of these. A final outcome
relates to overall family satisfaction with the ECRIMGD Comprehensive
Assessment Model. Do families feel that they are included in meaningful
and productive ways? Do families perceive that their input is sought
and valued? This outcome could be measured using parent satisfaction
interviews or surveys, which occur repeatedly during the course of assessment
and intervention design and implementation and as the child grows and
develops. For example, are families more likely to perceive themselves
as an important decision maker during a child’s early experiences
with special education services and less important as the child grows
and service delivery options change? Do families feel their beliefs
and values are respected by other members of the team during initial
phases of our Model (e.g. when selecting general outcomes) than during
later phases (e.g. intervention implementation)?
Future Research Plans
Future research plans include validation of the 4 outcomes and selection
of additional outcomes (if any). To accomplish this, PACER and ECRI-MGD
investigators will conduct a validation survey of parents of children
with disabilities (birth to age 8) at each of the three cooperating sites,
assuring a wide selection of families from various ethnic, cultural. and
linguistic backgrounds. In addition, PACER will work closely with Carl
Dunst and others at Early Childhood Research Institute on Families in
North Carolina and with Don Bailey and Robin McWilliam at the OERI Center
at Frank Porter Graham Center at the University of North Carolina-Chapel
Hill to coordinate research efforts in this important area. Finally. PACER
will assist ECRI-MGD investigators in developing and validating techniques
to measure family outcomes. These assessments will be part of a national
field-test of the Comprehensive Assessment model.
Bailey, D., McWilliam, R.A., Darkes, L.A., Hebbeler,
K., Simeonsson, R.J., Spiker, D., & Wagner, M. (1998). Family Outcomes
in Early Intervention: A framework for program evaluation and efficacy
research. Exceptional Children, 64, 313-328.
Bernheimer,L.P., Gallimore, R., & Kaufman, S. (1993).
Clinical child assessment in a family context: A four group typology of
family experiences with young children with developmental delays. Journal
of Early Intervention, 17, 253- 269.
Lynch. E. & Hanson, M. (1992). Developing cross-cultural
competence: A guide for working with young children and their families.
Baltimore: Brookes.
McWilliam, P.J., Winton, P.J., & Crais, E. (1997).
Practical strategies for family-centered early intervention: Getting
down to brass tacks. Singular Press.
Roberts, R. (1990). Developing culturally competent
programs for families of children with special needs. Washington,
DC. Georgetown University Child Development Center.
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