Abstract
“natural and inclusive settings . . . include the child’s home, early education and care programs, and other community settings in which children without disabilities participate.”
Kate and Bob are the parents of two young children, Eugene (38 months) and June (18 months). Their son, Eugene, was diagnosed with cerebral palsy, received early intervention services, and is now attending an inclusive preschool in their local school. Kate, noticing Eugene’s growing interest in participating in activities with peers, arranged for her parents to take both children to their community’s public library story time. Eugene’s grandparents reported how much both Eugene and June enjoyed the outing and have added this to their weekly schedule of outings with the grandchildren. Kate began to wonder about other activities and places in the community that he would enjoy. She was, however, not sure about where to turn for ideas for activities and how to get support for ensuring that Eugene could safely access the activity and successfully participate. She reached out to Mandy, the early childhood special education teacher of Eugene’s preschool co-teaching team. Mandy is excited about the potential benefits for Eugene as he participates in activities with his family, however she is not sure about her role and exactly where to start.
Inclusion is central to our work in early intervention and early childhood special education (EI/ECSE) and reflected in the core beliefs and recommended practices of the field (Division for Early Childhood [DEC], 2014). Inclusion, according to the joint statement of the DEC and the National Association for the Education of Young Children (2009), means that each and every child, regardless of their abilities or disabilities, as well as their family have the right to be accepted and respected as valued full members of their communities and participate in a broad range of activities, including educational and recreational settings. The expected outcomes of ensuring equitable access to this broad range of activities and settings for children and their families are a sense of belonging and membership, positive social relationships, and development and learning to reach their full potential. These same expectations are echoed in Individuals with Disabilities Education Act (IDEA)’s Part C and Part B, Section 619 (2004) requirements that EI/ECSE services, to the maximum extent appropriate, be provided in natural and inclusive settings. These settings include but are not limited to the child’s home, early education and care programs, and other community settings in which children without disabilities participate. To achieve the outcome of equitable access and active participation, engagement, learning, and development, a variety of intentional supports need to be considered that are designed around the individual needs and priorities of the child and their family (Odom et al., 2011). Research and development addressing how to plan for and provide appropriate supports to facilitate successful access and participation has primarily centered on educational settings, with less work addressing broader contexts of inclusion in everyday neighborhood and social connection activities (Beckman & Hanson, 2002). Thus, even though our definitions and policies on ensuring equitable access and participation clearly address community participation, we have not typically provided guidance to those who work in early childhood education, like Mandy, on addressing a more complete definition of inclusion.
“embracing a “complete definition” of inclusion, that goes beyond educational settings.”
A second core belief of EI/ECSE is the essential role of the family in the learning and development of their young child (DEC, 2014). The recommended family practices focus on placing the family at the center as decision-makers and partners. The professional’s role is to engage with the family in experiences that strengthen the family’s existing knowledge, and promote the development of new and enhanced skills and abilities that facilitate the child’s development through everyday learning opportunities (Bruder, 2000; Keilty, 2016). These family-centered practices are based on three core principles (Dunst, 2002; Rouse, 2012). First, all families possess strengths that can be used to help their child, and these strengths need to be acknowledged and serve as the foundation of the partnership. Second, although all families have strengths, all families do not have equal access to resources and thus they may need additional support to enact their strengths and marshal necessary resources (Workgroup on Principles and Practices in Natural Environments & OSEP TA Community of Practice: Part C Settings, 2008). Appropriate help-giving practices empower families to be active and equal partners and enhance their confidence and competence in their role as primary decision-makers for their child (Dunst, 2002). Third, professionals must build a collaborative partnership with families and together tailor services to respond to the priorities, beliefs, and culture of the family (Dunst et al., 2007). Thus, a family-centered approach is characterized by treating families with dignity and respect, facilitating families’ active participation and strengthening their capacity as well as being individualized, flexible, and responsive to each family’s unique circumstances as we build a reciprocal collaborative partnership with the families (Dunst, 2002). Professionals are asked to assume the role of partner, listener, facilitator, and learner rather than a more traditional role of expert, decision-maker, and advice-prescriber (Espe-Sherwindt, 2008).
To accomplish the task of embracing a “complete definition” of inclusion, that is, one that goes beyond educational settings, family-centered practices can provide guidance for professionals. That is, the early childhood professional can use family-centered practice principles as a tool to reflect upon various strategies and tasks they consider using. For example, Mandy, Eugene’s teacher, after her conversation with Eugene’s parents, Kate and Bob, might have responded with a previously prepared list of community resources or simply responding with one or two suggestions based on their brief discussion. Upon reflection, however, on adherence to the family-centered practice principles, Mandy likely would conclude that these strategies fall short. Community experiences that do not take into account the daily functioning and needs of a family are likely not to promote meaningful participation (Turnbull et al., 2007). Supports must be built on the family’s strengths and priorities. Often, professionals’ impressions of a family’s strengths and needs are mistaken; thus, collaboration between a family and professionals is required to identify and reflect on relevant needs and resources and develop an action plan (Ray & Street, 2005). Guided by a family-centered perspective, the professional’s role is to support the family’s confidence and competence in making the most of community activities in which they participate, their ability to seek out available resources and opportunities, and their skills in establishing networks and relationships with community organizations (Schwartz & Rodriguez, 2001).
“Our purpose is to describe a process grounded in a family-centered, strength-based, capacity-building approach.”
Our purpose is to describe a process grounded in a family-centered, strength-based, capacity-building approach to guide professionals in partnering with families for successful community inclusion. To implement the process, the first task is to develop a shared understanding of the family’s concerns, resources, and priorities. The second task then for the professional and family is to jointly identify outcomes and develop a plan for achieving the outcomes. We propose the use of two tools (i.e., Ecomaps and Routines-based Interview [RBI]) and describe how they may be used together to implement the process. We begin by briefly describing each tool and how they work together. This is followed by a detailed description to guide implementation of the process through three phases—developing an Ecomap, conducting an RBI, and identifying outcomes and potential solutions.
Ecomap and RBI Tools
Various methods, ranging from structured approaches (e.g., questionnaires) to informal conversations, have been used to gather information from families regarding family resources, concerns, and priorities (McWilliam et al., 2009). Of the various interview methods, the Ecomap and RBI may be particularly effective at gathering information regarding the family’s ecology and the goodness of fit with the demands of community activities. The Ecomap identifies the relationship between a family and their environment, particularly in terms of the family’s current resources and supports and needs for additional supports (McCormick et al., 2008). The RBI examines the activities and daily routines of the child in the context of their family and community settings (McWilliam et al., 2009). The Ecomap, together with the RBI, may assist professionals as they work with families to identify factors that help or hinder community participation and to understand supports needed. The result is a plan that addresses the family’s priority outcomes and fits well in the family’s context.
Both the Ecomap and RBI are completed jointly by the professional and family in a side-by-side process eliciting family member’s perceptions of resources and needs (McWilliam et al., 2009). The process focuses on building the family’s capacity to utilize their resources and strengths and to determine for themselves the information and services needed to further enhance their community participation. As both the Ecomap and the RBI involve informal conversations and reflections with a family, it is more likely that they will foster rapport than traditional surveys and less likely to convey feelings of judgment (Jung, 2010). Furthermore, the family centeredness of both facilitates the identification of unique family characteristics that highlight how the family interacts with the community (McCormick et al., 2008).
The Ecomap and RBI are simple-to-use tools that require minimal preparation. We suggest using the Ecomap and RBI as a continuous process in which first the Ecomap is completed (Phase 1), followed by the RBI (Phase 2). The completed Ecomap provides a visual of the family’s ecology and their resources within the community. The RBI serves to further articulate the discrepancies that may exist between how the family’s routines currently function (priorities and concerns), how they would like them to function (outcome), and what resources may be needed to achieve the desired outcome (implementation plan). Finally, in Phase 3, the results of the Ecomap and the RBI are used to jointly identify outcomes and the resources and supports needed to achieve the desired outcome.
The First Phase: Ecomap Process
An Ecomap is a graphic representation of how a family is connected to the larger social system. Using the strategies developed by McCormick and her colleagues (2008), an Ecomap diagram results in a quick, at-a-glance picture of a family’s ecology, resources, and supports.
Step 1: Identify Supports and Resources
First, the professional asks the family about people in the immediate household, writes and circles the name of each person, and draws a circle around those circles as a family unit. The family then shares current supports, starting with the informal supports and moving to formal supports. Examples of informal supports are extended family members, friends, and other individuals from the community (Jung, 2010). Examples of formal supports are education and care programs, financial assistance, and medical care. Each support is placed in a circle outside of the family unit and enclosed with a large outer circle such that the two nested circles form a graphic representation of the family support unit.
Figure 1 illustrates the first three steps in the development of Eugene’s family’s Ecomap. The completion of step 1 shows that Eugene is surrounded by Kate (his mother), Bob (his father), and June (his younger sister), which make up his “inner circle” or immediate family. In the outer circle, we see the variety of informal and formal supports, including his grandparents, neighbors, family friends, and school, as well as health care support.
Example of the Ecomap: Step 1: Idenify supports, Step 2: Identify community activities, and Step 3: Assess adequacy of access and particpation
Step 2: Identify Community Activities
The conversation now moves to identifying the community activities in which the family is currently participating, activities in which they do not currently regularly participate because of challenges they have encountered, and activities in which they would like to participate but that are not currently available or accessible. Examples include religious or recreational activities and functional family routines such as grocery shopping. Each activity is placed in a circle outside of the support network circle. Each activity circle is coded as to the current participation status. Specifically, the following codes are used: participating (P), not-participating (NP), or not-available (NA). Reviewing Figure 1, we can see Eugene’s family community activities and the current status of each. Kate, Eugene’s mother, shared that their family attends a small community church. Mary, a family friend and member of the church, has created a small group activity time for several children of church families that occurs at the same time as the weekly worship service. Eugene, together with his sister, regularly participate while their parents attend the service. We also see that Eugene goes to the park and the public library’s story time once a week with his maternal grandparents. Kate shared that Eugene loves going to the grocery store. Currently, however, she does not take him because he cannot safely sit in the grocery cart seat because of his hip braces. Finally, she expressed her desire for Eugene to go swimming at their local pool.
Step 3: Assess the Adequacy of Access and Participation
At the completion of step 2, informal and formal supports and resources and current and future community activities have been identified. The conversation then moves to more fully understanding the adequacy of the supports and resources for the identified community activities. The process starts with the family and professional reviewing each community activity and determining the type of support and the strength of that support currently available. Examples of support types are emotional, material, financial, transportation, and informational assistance (Jung, 2010). A support’s strength is judged by its frequency or regularity. Together the parent and professional add lines to the map that connect the individuals in the two inner circles to the community activities. A code is placed next to each line to denote the current type of support that facilitates the child’s access and participation in the activity. Again, in reviewing Figure 1, we can see how the individuals in the inner circles support participation in community activities. For example, we can see the important support role that his grandparents provide in Eugene’s access to and participation in the library story time as well as regular visits to community parks with his sister. Furthermore, the map clearly indicates the lack of current supports for two potential and desired community activities (i.e., grocery shopping and recreational swimming at the local YMCA).
Step 4: Review and Problem-Solve
After documenting all informal and formal supports, community activities, and the adequacy of access and participation, the family and professional review the Ecomap. Together they consider how access and participation might be improved in their current activities as well as the additional activities the family would like to consider. They discuss how the family might tap into their current resources and support networks to address some of the areas of concern. They then jointly create a list of additional resources needed to address access and participation in the range of community activities that the family has identified as current priorities. The professional and family can then share community resources and supports of which they are aware and identify community members or organizations who can assist with connecting to additional community resources. The family then decides which they would like to investigate further and these are added to the Ecomap. Figure 2 illustrates the potential resources (i.e., consultation from an aquatic therapist and an occupational therapist) that will be investigated for solutions to issues that limit Eugene’s access and participation in a swimming program and shopping at the grocery store.
Example of Ecomap Step 4: Review and problem-solve
The Second Phase: RBI Process
Once an Ecomap is completed, the professional and family move to the RBI process. RBI is a semistructured interview in which information is gathered about how the child and family function within and across their daily routines, how and if the currently available resources meet the demands of the routines, and the family’s priorities for enhancing participation in routines (McWilliam, 2010a). From a community participation perspective, the RBI would also be used to identify current and additional community participation opportunities and how they might be enhanced. The RBI steps described below are adapted from McWilliam’s work.
Step 1: Identify Main Concerns
With an understanding of the family’s ecology and resources from the Ecomap, the professional and family move to considering concerns the family may have regarding community participation. Family concerns vary based on their community participation experiences and expectations. A variety of factors, including but not limited to cultural and linguistic background, socioeconomic status, and familiarity with the community impact families’ community participation (Beckman & Hanson, 2002). Actively listening to and acknowledging families’ experiences, feelings, and concerns about community participation is a critical foundation to moving to the next step of understanding community participation opportunities in the context of the family’s regular routines.
Step 2: Go Through Community Routines
Typically, in the RBI, the professional would ask the family to describe the routines of a typical day. When addressing community participation, the professional asks the family to identify routine activities in which the family engages that involve community access and participation. For each community routine/activity, additional information is addressed, including how such access and participation is supported, who is involved, the nature of the child’s engagement, and any challenges they may encounter in accessing and participating in the activity. For example, Eugene’s mother, Kate, identified grocery shopping as a regular family routine and one of Eugene’s favorite outings. However, she shared that she recently stopped bringing him with her on a regular basis and goes alone when neither her husband or one of her parents are available to help. This makes her sad because she very much enjoyed this time with Eugene. However, because of his hip braces, he is not able to sit safely and securely in the grocery cart, nor can she manage both the cart and stroller as she shops without another adult’s help. Grocery shopping alone is not optimal because she must use her work lunch break to shop because at that time, the children are in school or child care.
To guide and document this discussion, an RBI Report and Outcome Summary form (adapted from McWilliam, 2010a), as shown for Eugene’s grocery shopping activities in Table 1, is used. One form is completed for each identified community activity. For step 2, the first half of the form is completed in which the current level and need for support for access, engagement, independence, and social relationships for the routine/activity are briefly described. Mandy and Eugene’s parents’ completion of this section of the form (Table 1) highlights the two primary areas in need of additional support (i.e., access and independence).
Example of a Completed RBI Report and Outcome Summary
Note. Adapted with permission from McWilliam (2010b). RBI = routines-based interview.
Step 3: Rate Satisfaction With Routines
For each identified community routine, the family provides a rating of their general satisfaction with the routine/activity on a scale of 1 to 5 (i.e., 1 is poor fit and 5 is excellent fit) to indicate how well the routine currently works for the family in terms of community inclusion. Based on the rating, the discussion moves to whether the family wants to make a change to the routine, and if so, a star is placed on the top of the form. For those routines in which the family wants to make a change (starred routines), the final discussion for step 3 addresses the identification by the family of the main areas of concern currently affecting their satisfaction. This discussion is again guided by and documented on the RBI Report (see Table 1—Satisfaction and Concerns or Aspirations). In Table 1, satisfaction with the grocery shopping routine was rated as a poor fit for Eugene’s family. The routine is starred to note that a change is needed and the family’s concern is described.
Often families will share either during the Ecomap process or in other conversations community activities that are not yet part of their routines but that they would like to explore. For example, Eugene’s family mentioned participation in a local swimming program during the Ecomap process. These activities should be noted in the Concerns or Aspiration Section of the RBI Report and Outcome Summary form.
The Third Phase: Development of Outcomes and Potential Solutions
After identifying resources and community activities through the Ecomap and RBI processes, it is time to complete the final phase, developing and prioritizing outcomes and potential solutions. This step begins with the family and professional reviewing the RBI Summary Forms and noting the community activities for which the family has indicated that they want to make a change (marked with a star) and activities that they want to add. For each activity/routine, the desired outcome(s) and potential solution(s) or supports to achieve the outcome(s) are developed. Again, the RBI Summary Form serves as a guide and way in which to document the ideas generated. As illustrated in Table 1, Eugene’s parents and Mandy identified two potential outcomes to address the grocery shopping routine. They then developed several potential supports for each outcome that would enhance Eugene’s participation as well as meet the family’s need for completing their grocery shopping. The family then reviews the outcome(s) and, if there is more than one, prioritizes each and similarly prioritizes each solution (McWilliam et al., 2009). Eugene’s parents identified Eugene going with either of them each week as the preferred outcome. His parents’ choice of solutions was to consult with the school’s occupational therapists on adapting his braces so that he could sit safely in the grocery cart rather than adapting his stroller or getting a babysitter. After the outcomes and potential solutions have been developed for each starred routine/activity or any that were added, a priority order for implementation is created. Eugene’s parents noted participation in a local swimming program as the highest priority, going weekly grocery shopping with Eugene as second, and finding an age-appropriate playmate for arranging playdates for Eugene as third.
Conclusion
Using the Ecomap and RBI process in partnership with a family, professionals can gain a greater understanding of the family’s strengths and facilitators for community participation. For example, Mandy, Eugene’s teacher, learned about Eugene’s growing interest in peers and outside activities, informal supports from Eugene’s grandparents and family friends, his parents’ desire for enhancing his access and participation in the community, and the availability of a number of community resources. Together they identified several issues that currently were limiting Eugene and his family’s access and participation and generated strategies to address the issues.
EI/ECSE can play an important role for families of children with developmental delays and disabilities by facilitating access to information, supporting connections with community resources, and increasing the families’ confidence and competence in identifying and utilizing resources and opportunities for community participation. EI/ECSE can use the combination of the Ecomap and RBI interview tools to guide their efforts to partner with families and ensure a good fit. The use of these tools leads to the identification of functional and meaningful outcomes for both the child and their family. Furthermore, the attainment of these outcomes is enhanced by the joint development of clearly articulated plans for on-going support. Finally, the plan for each outcome should be revisited to review progress and modify outcomes based on changes in the needs, priorities, and routines of the child and family (McWilliam et al., 2009).
Returning to the opening vignette, we see Mandy and Eugene’s family gathering for a review of the community participation outcomes established in their initial meeting. Mandy and Eugene’s parents meet for a parent–teacher conference and use the opportunity to go over the community inclusion outcomes. Kate shares that the adaptations developed for grocery shopping have also been helpful for several other community outings. His father shares his excitement with Eugene’s participation in swimming, facilitated by their connection with the aquatic therapist. Kate, however, notes that Eugene’s transition to using a walker for independent mobility, while an exciting developmental step, is making it more difficult for him to interact with peers. Mandy describes the strategies they are using in the classroom to address this issue. She offers to join the family for one of their family outings so they can work together to see how the strategies might work or need to be modified to work in other contexts.
Our purpose was to describe a process to guide professionals in partnering with families for successful community inclusion in which Ecomaps and RBI tools are used together. While these two tools were briefly described, a more in-depth discussion of procedures for implementation of each was not feasible. Readers may find the following online training materials useful as a starting point: for developing an Ecomaps—EDS 522 Module 2: Family Ecology (Jung, 2015) and for RBI implementation—RBI Introduction and Overview (Brocher & Hankey, 2020).
