Supporting families who have family members with intellectual and developmental disabilities (IDD) as they move through life is a critical need (Reynolds, Palmer, & Gotto, 2018). The phrase, supporting families, juxtaposes the typical family support paradigm in response to the ongoing shrinkage of federal and state dollars and the recognition that parents and caregivers need services and supports to support their family member with IDD at home (Amado, Stancliffe, McCarron, & McCallion, 2013). Within the family support movement, families are defined in the broadest terms, including those living in the same household, people who are affiliated by birth or choice, and others in the role of helping individuals with IDD succeed in life (Reynolds et al., 2015; Turnbull, Turnbull, Erwin, Soodak, & Shogren, 2015).
In 2011 at the Wingspread Conference Center in Racine, Wisconsin, a National Agenda for Supporting Families was developed in consensus with stakeholders from families, self-advocates, and professionals (Hecht, Reynolds, Agosta, & McGinley, 2011). With this alteration in terms and vision, families that include individuals of any age with IDD are encouraged to tailor their advocacy to include more community-based ideas for support (informal supports) rather than relying exclusively on formal or paid services and supports for their loved ones.
According to Ticha, Hewitt, Nord, and Larson (2013), people with disabilities want services that help them fully participate in the community and they want control over how they receive services. Long term services and support systems are beginning to acknowledge the significant role of the family and their potential support needs as policies and practices are being aligned with the Center for Medicare and Medicaid Services' (CMS) Final Rule on Home and Community Based Services (HCBS; Centers for Medicare & Medicaid Services, 2014). According to the Final Rule, individuals with IDD receiving services and supports through HCBS programs need to have full access to community living and receive services in the most integrated settings. For people with IDD to be more involved in the community of their choice, changes in both supporting families and supporting individuals with IDD must evolve. The Family sub-group within the National Goals in Research, Practice, and Policy for individuals with IDD addressed the following family outcomes:
(1) develop a better understanding of the complex family structures in the United States and the best practices for supporting them; (2) extend our knowledge on how families are or might be supported by their natural communities, outside the purview of IDD systems; and (3) synthesize support practices, implementation strategies, and outcomes for supporting families. (Reynolds et al., 2015, p. 260)
This article addresses practices, strategies, and possible outcomes for supporting families including a family member with IDD and evaluates training methods for the Charting the LifeCourse framework (Reynolds, St. John, & Gotto, 2012).
Charting the LifeCourse Framework
The Charting the LifeCourse framework (http://www.lifecoursetools.com/principles/) was iteratively created in collaboration with and for families and individuals with intellectual and developmental disabilities (IDD) in partnership with professionals in the state of Missouri and then continued to evolve nationwide through the National Community of Practice for Supporting Families with Members with Intellectual and Developmental Disabilities (National CoP). The framework provides individuals, their families, practitioners and policymakers with a set of guiding principles for decision-making, problem solving and strategic thinking for policy, practice and systems change (Reynolds & Kardell, 2017). Using a grounded theory method (Birks & Mills, 2011) a research and practice team began to investigate the issue of how people with IDD and their families can have a good life by integrating natural and paid supports to a pathway for families and individuals with IDD to live the lives they want. Some results of Charting the LifeCourse framework include individual stories (a young adult working on job development in Missouri independently identified action steps to obtain a job in his neighborhood) or family level results (families in Pennsylvania networking to encourage social capital and community living opportunities). LifeCourse also supports organizational level outcomes (provider agencies in Kansas collaborating on revising policies to better include families) and policy (a new waiver program in Tennessee to leverage self-directed supports related to formal funding to fill needs).
The University of Missouri Kansas City, Institute for Human Development (UMKC-IHD), leads the Charting the LifeCourse initiative that includes guiding principles and components for supporting decision-making, problem solving and planning at all levels. The principles incorporate a socioecological framework, which begins with individuals with IDD, their families, the community, formal and informal supports, and a systems-change process to impact policies and practices. A toolkit for Charting the LifeCourse work can be used for multiple purposes including person-centered planning, community decision-making, and systems change visioning. In conjunction with multiple funding sources, Dr. Sheli Reynolds and her staff have developed a multi-method means of training and dissemination of Charting the LifeCourse work to enhance the process of supporting families in participating states.
One training type used in Charting the LifeCourse work is delivered within the National Community of Practice on Supporting Families of Individuals with Intellectual and Developmental Disabilities (CoP), a collaboration with National Association of State Directors of Developmental Disabilities Services (NASDDS; Reynolds & Kardell, 2017). A community of practice involving online interaction and targeted information for immediate needs provides a sense of partnership (Farrell, LaPorta, Gallagher, Vinson, & Bernal, 2014). CoPs can vary according to purpose or membership, since this model varies widely in form and function (Ranmuthugala et al., 2011).
The second training type mirrors that of professional development. Results of a meta-analysis of 12 educator trainings/professional development studies in special education suggest that training opportunities should include a combination of modeling and performance feedback (Brock & Carter, 2017). According to Dunst and Trivette (2009) the most effective way to engage learners in knowledge, material, or practice application is to combine real life application and role play. Training should actively involve participants in discussion, using materials, and mastering targeted knowledge.
Families are diverse, and as the first National Goal mentions, families are complex. The purpose of this article is to describe the results of training and initial ideas for implementing the Charting the LifeCourse framework for supporting families. Specific research questions include (1) What is the impact of Charting the LifeCourse training events on participant knowledge related to supporting families? and (2) To what degree is variation in participant knowledge related to supporting families explained by the exposure to trainings, training type, and familiarity with LifeCourse? Results of pre-post surveys can provide insight into the purposes and learning outcomes as a number of participants were beginning to use the LifeCourse for supporting families at all levels of implementation – individuals with IDD, families of individuals with IDD, provider agencies, state developmental disability organizations, or policy makers.
Table 1 provides an extensive description of the 784 people arranged by training type who have participated in Charting the LifeCourse training events This sample represents one of convenience in that people in this analysis chose to complete surveys. Training events were divided into two broad types described in Procedures below.
As people arrived at each training session, attendees completed the Knowledge Related to Supporting Families LifeCourse Principles Survey. The same trainers at each event then reviewed Charting the LifeCourse principles and exercises to guide thinking and decision making in areas of interest. Type 1 training events lasting four to five hours included opening sessions of five state LifeCourse CoP annual meetings, leadership trainings, and an annual showcase of LifeCourse held in Missouri. Type 2 events, 6-8 hour workshops, trained professionals in eight states. These events followed the same format but Type 2 events also included an opportunity for hands-on activities to understand the application of the principles for problem solving and planning. Although the purpose of each meeting varied slightly, the basic content is the same, in terms of LifeCourse principles and practices. In addition, attendees from each group shared which life stage and life domain constituted their reason for being a part of the Charting the LifeCourse training. Each respondent provided a description to several open-ended prompts querying the overall anticipated focus for LifeCourse work in their family or professional life. After each training event concluded, participants completed the post-survey items.
The Knowledge Related to Supporting Families in the LifeCourse is a measure of content knowledge of Charting the LifeCourse delivered during various trainings, in order to determine efficacy of the delivery and participant understanding of the purpose and understanding of key LifeCourse concepts. The survey consisted of ten items in a four-point Likert scale ranging from Strongly Disagree (1) to Strongly Agree (4). We surveyed perceptions of supporting families in the lifespan, as well as their use of principles and practices that support persons with IDD and their families.
Exploratory Factor Analysis (EFA) with principal axis factoring (PAF) extraction and promax rotation conducted in SPSS used the ten items in the survey; with only one leading factor extracted. Using reliability testing in SPSS with Cronbach's Alpha if item deleted index we found we did not need to remove any items from the survey to improve reliability. Therefore, all ten item responses were entered into R to confirm the survey structure using confirmatory factor analysis (CFA). The results of CFA confirmed the one-factor structure with all items having factor loadings greater than 0.6. We also tried other multifactor structures or deleting the lowest-loading items, and none improved the model fit. Thereby, the one-factor model (with ten items) confirmed in CFA was retained as it was also the structure guided by EFA and reliability testing, though the model fit is moderate χ2 (35) = 244.13, p < .001, CFI = .94, TLI = .93, RMSEA = .06, SRMR = .04. Table 2 contains survey items and factor loadings. Internal consistency of survey items was in the high range (α = .93) using Cronbach's Alpha (Cronbach, 1951).
We used multi-level modeling (MLM) for repeated measures to analyze survey result data. With pre-post data (repeated observations) nested within individuals, a two-level modeling with repeated measures data examined the training type effects on knowledge for supporting families using the LifeCourse framework over time. Fixed effects at Level 1 were the repeated measures (pre- and post- evaluations), and at Level 2 were training type, familiarity of Charting LifeCourse Framework, events attended previously, and length of time connected to the field of disability. Random effects of time at Level 1 and training type at Level 2 were the major ones we tested for random intercepts and slopes. All multilevel models were constructed and estimated in R (R Core Team, 2017), using the “nlme” package (Pinheiro, Bates, DebRoy, Sarkar, & R Core Team, 2017) in R (R Core Team, 2017).
In Multilevel Modeling (MLM), we first ran an unconditional (null) model of knowledge gain with no predictor variables entered at Level 1 or Level 2 to evaluate the extent to which variability in the dependent variable was attributable to individual/group differences or change over time. Intraclass correlation (ICC) in the unconditional model was .042, indicating approximately 4.2% of the variance in the outcome can be attributed to differences between individuals, and 85.8% of the variance in the outcomes was explained by other variables (e.g., training type).
Overall, the training survey yielded findings that inform the continued use of Charting the LifeCourse as a means to encourage supporting families to support the lives of individuals with IDD. Table 3 provides estimates of all fixed effects from the full model. The results indicated that participants who attended the trainings have a significant knowledge gain (β = .46, p < .001) after the training based on pre- and post-training evaluations. In addition, participants who have attended more events previously reported having consistent knowledge gain after the training (β = .05, p < .01), and those who are more familiar with Charting LifeCourse demonstrated more knowledge gain after training as well (β = .16, p < .01). Thus, the trainings in general, regardless of training type, are effective for participants who are interested in Charting LifeCourse, even for those who have already been using the Charting LifeCourse framework. Participants who have been connected to the field of disability longer do not seem to have significant knowledge gain after training (β = .02, p = .13). As far as which training type works better, the negative coefficient of the training type showed that participants who attended Type 1 training events (leadership, national showcase, and CoP events) had less knowledge gain at post-training evaluation time (β = -.15, p < .001) than those who attended Type 2 training events (Supporting Families LifeCourse training).
The final full model was a conditional growth model with training type as the random effect (both intercept and slope), since the random effect of time was not significant. The chi-square test of the model comparison for the random intercept was significant, χ2 (2) = 8.94, p = .01, indicating that the participant baseline knowledge differed between training types. In addition, the random slope was significant, χ2 (2) = 13.52, p = .001, indicating that slopes of change in participants' knowledge gain differed between training types. A further test of the quadratic term (type × type) was added to evaluate the presence of nonlinear growth. The quadratic term was not tenable, indicating that growth is best described as linear. Then we added training type to the model as the cross-level interaction between training type and time; the main predictors in which we are interested. Results showed that there was a significant cross-level interaction between the two (β = .23, p < .001), which means that the slope variance of training type was significantly attributed to the time. In other words, by spending time in either type of the training events, participants' knowledge will increase after the training, which reaffirmed Charting LifeCourse training effectiveness. Figure 1 demonstrates participants who attended Type 1 training events (leadership, national showcase, and community of practice events) consistently reported having more knowledge at post-training evaluation time than those who attended Type 2 training events (Supporting Families LifeCourse training). However, participants who attended Type 2 training events gained knowledge faster than those who attended Type 1 training events.
The results from both types of training events are encouraging in that overall, both types are effective as to reported acquisition of knowledge of Charting the LifeCourse. However, we did find a greater increase in knowledge during Type 2 trainings that followed the same format each time and included an opportunity to apply the principles and tools to a specific case study. The principles and tools for both event types are rooted in the activities of the National Charting the Lifecourse CoP. We believe that the impact of the training events is a direct result of CoP activities. Lave (1991) explains that knowledge acquisition occurs through the process of becoming a member of a sustained CoP. Members assume the implicit values of the community through their interactions and reflections with other community members (Mann, 2011). This is consistent with our results as those participants who had attended Charting the LifeCourse events previously demonstrated consistent knowledge gain after the training (β = .05, p < .01), and those who reported that they were already familiar with Charting LifeCourse, demonstrated more knowledge gain after the training as well (β = .16, p < .01). Rayner and colleagues (2014) point out that the CoP model of knowledge transfer, which includes collective reflection, guiding and mentoring, and meaningful work in the community “promotes learning for new participants and strengthens the community as a whole” (Rayner et al., p.64).
The Charting the LifeCourse framework and tools guide person-centered system-wide policy and practice change across the country. Currently, LifeCourse serves as the guiding framework for the National CoP, which began in five states and now includes 17 states. Additionally, it is being introduced and implemented within and outside of the IDD system for policy, organizational and practice changes in reaching other target populations such as education, employment, housing, managed care organizations, and family and self-advocacy networks (McVeigh et al, 2017; Reynolds & Kardell, 2017). As a result of this broad implementation, it is important to provide consistent training on the principles to ensure fidelity to both the framework and the tools as they are used across the country and across sectors.
Data were limited to pre-post evaluations of a convenience sample and the nature of the questions, although internally consistent, might have restricted measurement of training efficacy. Several sources of bias are part of this analysis with the primary one that the responders are a convenience sample who were sufficiently motivated to respond to a survey presented at the beginning of a session. We have no way to determine the characteristics of non-responders at the meeting or to compare these with people who did not attend the training. In reality, people who choose to learn more about LifeCourse information would be inclined to respond positively. It is possible that only people with positive dispositions toward the content completed survey items, resulting in positively skewed data (Etikan, Musa, & Alkassim, 2016). In addition, another limitation is that the survey is self-report data, but this information does not represent the actual intentions of people in attendance or predict the results of use of the Charting the LifeCourse materials and principles. Further research is needed to determine any possible usage or long-term training effects. More information about the participants including their age would also help explain how people with various perspectives related to people with IDD might have influenced training results. Field notes collected for each training event, to clarify training content and audience participation, would enhance future investigations of training for LifeCourse.
Implications for Supporting Families
Living in the community is better for people with IDD than living in large, congregate settings (Francis, Blue-Banning, & Turnbull, 2014). Certainly, most families have recognized this as people with IDD have predominately lived at home with their families. In order to maintain the family as a system of support, while at the same time promoting community integration and the pursuit of independence for people with IDD, families and individuals need tools that help them engage in communication and problem solving throughout the life span. This is particularly important as state and federal funds diminish (Hecht, et al., 2011, p. 2).
States are also recognizing the importance of families in the lives of people with disabilities. However, there continues to be a need for state policies that help maintain the family as a system of support, while at the same time promoting community integration and the pursuit of independence for people with IDD. For those states that are involved in the National Community of Practice for Supporting Families, the Charting the LifeCourse framework is helping them strategize about how to help people with disabilities maintain or enhance their quality of life as they live in their own homes, in parents and family member's homes, and with friends.
The Charting the LifeCourse framework challenges our field to view the needs of individuals with IDD and their families in ways “that stretch beyond a single, narrow life domain to…target multiple life functions” (Hewitt, Agosta, Williams, & Reinke, 2013). Certainly, literature abounds with studies related to the needs of family caregivers of children with disabilities, through the lifespan, and to family members of older adults with disabilities (Chan, Merriman, Permenter, & Stancliffe, 2012; Heller & Factor, 2004; Williamson & Perkins, 2014). As a result of reliable and valid training events like those discussed above, the Charting the LifeCourse framework is helping to shape daily support practices as well as organizational and state policies that improve the life trajectories and pathways that individuals and families desire.
The Community of Practice for Supporting Families of Individuals with Intellectual & Developmental Disabilities is a national initiative of the University of Missouri Kansas City-Institute on Human Development, University Center in Developmental Disabilities and the National Association of State Directors of Developmental Disabilities Services. This project was funded in part by the Administration on Intellectual and Developmental Disabilities grant 90DN0298 and the effort is now sustained through a statewide membership structure. Grantees undertaking projects under government sponsorship and their evaluators are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official positions of the University of Missouri-Kansas City, or any partners or funding sources. The authors wish to thank Katherine Ragon, Jane St. John and Rachel Hiles of UMKC and Yoshi Kardell of Human Services Research Institute for their contributions to the article. We are grateful for their work on the Charting the LifeCourse initiatives.