The Early Childhood Center Inclusion Research Series:
Children with Significant Disabilities Served in Inclusive Community Settings
Parent-P
rovider R
elationships that
arent-Provider
Relationships
Suppor
Supportt Successful Inclusion
Gen Shelton
Elizabeth TTraub
raub
Overview
Young children with significant disabilities CAN
make developmental and social gains when they are
served in inclusive community settings. This paper
describes what we learned from our study of the
practices implemented to successfully include young
children with significant disabilities. “Successfully
included,” for this study, means that the child made
progress on IFSP outcomes or IEP goals; made gains in
general development and learning; and was accepted
as a full member of the group. In addition, parents and
professionals were satisfied with the child’s gains and
experience in the group setting. We interviewed and
observed early intervention (EI), early childhood
special education (ECSE), and early childhood education (ECE) providers and parents.
One of the major factors influencing the success of
inclusion in the settings we studied was the relationship between the parents of the children with disabilities and their providers. It is a key element of inclusive
practices. Turnbull and Turnbull (2001), define the
parent-provider relationship as one in which both
parties work together to strengthen the child’s development and build skills that are functional for the child in
a variety of settings. Parents felt a shared responsibility
and were viewed as active partners by early childhood
staff and specialists. In each of the sites we studied,
parent involvement and participation was evident and
critical to the success of the placement. However, the
relationships that formed between parents and providers were highly individualized and unique to each
child and setting.
© August 2004. All rights reserved.
Indiana Institute on Disability and Community
Indiana’s University Center for Excellence on Disabilities
Indiana University-Bloomington
“Promoting strong families and communities for ALL children through education and research”
Parent/P
rovider R
elationships:
arent/Provider
Relationships:
From the Literature
Successful inclusive programs address the children’s needs
within the context of their families’ needs—they are not
considered in isolation from each other (Turnbull &
Turnbull, 1997). Literature focused on inclusion and young
children (Erwin, Soodak, Winton, & Turnbull, 2001)
identifies the parent/professional relationship as a key
principle of family-centered practices (Dunst, 2002). When
families are actively involved in decisions and choices
regarding their child’s education, better outcomes are
realized for the child (Ryan, 1995). The authors of Integrating Therapies into the Classroom suggest the need for
professionals to establish a process whereby families and
professionals share knowledge, recognize the strengths of
each individual, and work as a team to avoid negative
experiences (Scott, McWilliam, & Mayhew,1999). It
requires strategies and solutions that are respectful, individualized and build families’ trust (Odom, 2002).
Results of our Study
The research team identified several features considered
critical in a positive parent-provider relationship. These
features are listed below with descriptions that include
examples or strategies to help explain what it looks like in
practice. These features were reflected across all of the
research sites.
„ Perception of Child
Parents and staff accept the children as they are with
a belief that all children can learn. Neither one had a
“fix it” mentality, but rather an attitude of building
upon the child’s strengths and adapting for specific
disabilities or special needs. Children had opportunities
to enhance their learning and development through
typical experiences and routines. Parents were anxious
for their children to have the same opportunities as their
peers, including the interactions that could ultimately be
an outcome of those opportunities—friendships. Both
parties expected the child to participate as a member of
the group. Parents indicated that the staff “treat my child
like they treat the other children” when describing what
makes the program work.
„ Individualized Practices
The severity of the children’s needs and disabilities
and their families’ priorities require strategies and
solutions that are highly individualized. Medical and
health related complications required providers to
acquire specific knowledge and skills for developing
and implementing the child’s individualized plan. The
most immediate source for this information was the
parents.
While the parent-provider relationship was integral to
the success of inclusive services, it looked different for
2
each child and setting. One example of this was the
accommodation for a child who was easily fatigued.
Parents and staff together reviewed the daily schedule,
shared their expectations and then determined the
child’s level of participation. The parent’s informal
inquiries about their child’s participation and progress
provided opportunities for parents and staff to compare
notes and modify the activities when warranted.
Individualizing practices means that the staff are
flexible and rely on strategies that match the children’s
and families’ needs.
„ Responsive to PParent
arent Needs and PPriorities
riorities
The program staff respond to families’ interests and
needs by establishing an environment that helps
parents feel comfortable. One parent described it as
an “ease of communication” between staff and parents.
The staff took advantage of opportunities to interface
with parents (e. g., drop off and pick up) as one way of
building the relationship. Another parent said the staff
had an understanding of the need “to make life easier
at home” for families of children with significant
disabilities.
Staff followed through on parents’ suggestions or
recommendations. One developmental therapy
specialist said, “My responsibilities are to try to achieve
the outcomes that the parents feel are important to
their child.”
„ Shared responsibility
The parents in this study have a real interest in
working with the staff to promote a positive
experience. They saw themselves as having a role and
shared responsibility for the successful inclusion of their
child. Program staff not only welcomed parent
contributions, but sought it out. Parents were
considered to be members of the instructional team
and viewed as active partners by the specialists and
other staff. Parents took advantage of opportunities to
put therapy and instructional strategies to work and
both parties were open to each others’ ideas and
recommendations. The climate of the program
encouraged parent contributions and parents saw
themselves as essential to their children’s learning and
development. An example of this was expressed during
an interview with a speech therapist who related what
one Mom was doing to reinforce what the staff was
working on at preschool. The child was asked to sign
the word “more” during snack time and Mom
requested the sign during meal times at home.
“His Mom is awesome . . . (she) works with him
constantly . . . always asking him to sign—and he’s
doing it for her more consistently than for anyone.
It’s kind of the routine they’ve gotten into and he
knows what she’s expecting.”
Children with Significant Disabilities Served in Inclusive Community Settings: Parent-Provider Relationships that Support Successful Inclusion
© 2004 - Indiana University-Bloomington, Indiana Institute on Disability and Community, Early Childhood Center
„ Expectations
The severity of a child’s disability and needs
determine the parents’ frame of reference and
expectations. When parents and providers alike had
the same expectations, no matter how significant the
child’s disability, it was more likely that the identified
goals and outcomes were achieved. Intermittent and
brief interactions between the children in the study and
the other children in the group were reported by staff
and observed by the research team. While parents did
not make specific requests of staff to establish these
times throughout the day, parents were aware of these
focused interactions.
Services provided in inclusive settings can raise parents’
expectations. Parents knew that their child might not
keep up with the other children, but were hopeful that
the development of social skills and friendships were a
part of the inclusive experience. Situations and
activities can be planned and implemented to facilitate
interactions between the two groups of children. Taking
the children’s lead is one approach that enhances these
times during the day.
The Role of Communication in
Developing PParent-P
arent-P
rovider
arent-Provider
Relationships
Early childhood programs increase the likelihood of
developing a good parent-provider relationship when
parents are informed and involved in the decisionmaking process (Fialka, 2001). A distinct part of the
relationship among parents and the providers in this
study was the ongoing interpersonal communication.
It was reciprocal and based on mutual respect.
Parents and providers exchanged information and
remained open to suggestions. They valued each
other as contributing to the growth of the child and
the success of the inclusive experience. Communication was essential to that process. In fact, the features
highlighted in this paper all have a communication
component.
The parent-provider relationship is based on effective
communication strategies. Regular communication
helps everyone make appropriate decisions about
service provision. It helps providers plan for the
child’s individual needs and promotes interaction
between providers and parents. Successful inclusion
is a team effort, relying on proven communication
techniques and the expertise of all the participants.
Summar y
Although the parent-provider relationship is integral to the
success of inclusive services, it looks different for each child
and setting. Specific children, families and programs require
strategies and solutions that respect the individuals involved.
To quote one parent’s observations:
“...I am glad teachers are interacting with [children
with disabilities]…the teachers are so good with
them. He’s waving ‘hi’ more now. And when we pull
up to the school he gets real excited…he’s ready to
go to school. He points and he giggles real loud. He’s
ready for his teachers. I hope they keep doing this....
The future depends on it.”
When working partnerships are examined to determine
what make them effective, it is clear that it is a spectrum of
factors that include: positive attitude, openness, desire to
gain the skills needed, a willingness to share information,
and willingness to participate as a member of the instructional team. Families want their child’s providers to have
clear expectations of what the child can achieve and to
share that information with them. Parents are able to be
optimistic when providers work together to create a plan
and offer suggestions of how to “get there.” Parents contribute to their child’s development by their active involvement
with providers. It enables families to carryover therapeutic
strategies within their family life. Children’s needs are
addressed in the context of their families’ needs. Early
childhood programs increase the likelihood of developing a
good parent-provider relationship when these features are
present.
References
Beckman, P. J., Hanson, M. J., & Horn, E. (2002). Family perceptions of inclusion. In S. L. Odom (Ed.), Widening the circle:
Including children with disabilities in preschool programs (pp.
98-108). New York: Teachers College Press.
Dunst, C.J.(2002). Family-centered practices: birth through high
school. Journal of Special Education. 60, 422-433.
Erwin, E. J., Soodak, L. C., Winton, P. J., & Turnbull, A. (2001). “I
wish it wouldn’t all depend on me.”: Research on families and
early childhood inclusion. In M. J. Guralnick (Ed.), Early
childhood inclusion: Focus on change (pp. 127-158). Baltimore, MD: Paul H. Brookes.
Fialka, J. (2001). The dance of partnership: Why do my feet hurt?
Young Exceptional Children, 4(2), 21-27.
Odom, S. L. (Ed.). (2002). Widening the circle. New York: Teachers
College Press.
Ryan, B. (1995). The family–school connection: a research
bibliorgraphy. In B. Ryan, G. Adams, T. Gullotta, R. Weissberg,
& R. Hampton (eds.), The family-school connection: Theory,
research, and practice (pp. 341-360). Thousand Oaks, CA:
Sage.
Scott, S. M.., McWilliam, R. A. & Mayhew, L. (1999). Integrating
Therapies into the classroom. Young Exceptional Children,
2(3), 15-24.
Children with Significant Disabilities Served in Inclusive Community Settings: Parent-Provider Relationships that Support Successful Inclusion
© 2004 - Indiana University-Bloomington, Indiana Institute on Disability and Community, Early Childhood Center
3
Turnbull, A. P., & Turnbull, H. R. (1997). Families, professionals,
and exceptionality: A special partnership. Upper Saddle River,
NJ: Merrill/Prentice Hall.
Turnbull, A. P., & Turnbull, H. R. (2001). Families, professionals,
and exceptionality: Collaborating for empowerment (4th ed.).
Upper Saddle River, NJ: Merrill/Prentice Hall.
Additional Resources
Lynch, E. W., & Hanson, M. J. (Eds.). (1998). Developing crosscultural competence: A guide for working with young children
and their families. Baltimore, MD: Paul H. Brookes.
Sandall, S. R., McLean, M. E., & Smith, B. G. (2000). DEC
recommended practices in early intervention/early childhood
special education. Longmont, CO: Sopris West
Acknowledgments
We would like to thank each person who participated in this
study – especially the parents and their children who were
the heart of the study. The time and knowledge they
generously contributed to this project is greatly appreciated.
For Additional Information . . .
For additional information about this paper or the study,
contact the authors: Gen Shelton, [email protected] or
Elizabeth Traub, [email protected] or at 812-855-6508.
About the Study
In 2002-2003, staff at the Indiana Institute on Disability
and Community’s Early Childhood Center conducted indepth qualitative research in six inclusive community
settings across Indiana. Our team of researchers wanted to
find out what contributed to the successful inclusion of
young children with significant disabilities. The study design
called for identifying children who were served in community settings. We expected to see children who were full
participants in their settings and receiving all services within
the classroom environment.
Seven children were identified in settings that included
community preschools and child care programs. Data was
gathered over a six-month period from the cluster of people
associated with each child. More than thirty early intervention (EI) and early childhood special education (ECSE)
therapists and teachers, early childhood education (ECE)
staff, and parents participated. The data was collected
through interviews, observations, and review of children’s
individual family service plans or individualized education
programs. Qualitative study methods were used to analyze
the data to discover essential elements that were present
across the settings.
Key elements were identified which support children in
inclusive settings. While all of the settings had features of
each element, some were stronger in one aspect than
another. The key elements were a) attitudes, b) parentprovider relationships, c) therapeutic interventions utilized
within typical community settings, and d) adaptations to
support children in the everyday routines and learning
activities provided for all children.
The topics in this Inclusion Research Series address our
findings around these key elements.
Copyright 2004 - Indiana University, Indiana Institute on Disability
and Community
The information sheet, Children with Significant Disabilities Served
in Inclusive Community Settings: Parent-Provider Relationships that
Support Successful Inclusion, was produced with support from
Indiana University-Bloomington. The information presented
herein does not necessarily reflect the position or policy of the
Trustees of Indiana University, and no official endorsement should
be inferred.
The Early Childhood Center is one of seven centers located at the
Indiana Institute on Disability and Community at Indiana University-Bloomington. The work of the Indiana Institute encompasses
the entire life span, from birth through older adulthood, and
addresses topical areas that include:
† Transition, employment, and careers
† Aging issues
† Autism spectrum disorders
† Disability information and referral
† Technology
† Planning and policy studies
† Individual and family perspectives
The Indiana Institute on Disability and Community pursues its
mission with support from Indiana University and funding from
federal and state agencies, and foundations.
Available in alternative formats upon request from:
Early Childhood Center
Indiana Institute on Disability and Community
2853 East Tenth Street / Bloomington, IN 47408-2696
†
†
Early intervention
School improvement and inclusion
4
Children with Significant Disabilities Served in Inclusive Community Settings: Parent-Provider Relationships that Support Successful Inclusion
© 2004 - Indiana University-Bloomington, Indiana Institute on Disability and Community, Early Childhood Center
On the Web at: http://iidc.indiana.edu/ecc