1 Preschoolers, Parents, and Partnerships: An Interdisciplinary Investigation Research Plan: Specific Aims Goal 1.

To examine both positive and negative bidirectional relationships within familial and rural community contexts for young children who have identified cognitive and language delays. The researcher will investigate whether the impacts of developmental and environmental factors differ by family composition, ethnicity, or linguistic status. While the research on child development in cognitive and linguistic domains has greatly enhanced our understanding of normative development, the influence of interacting ecological contexts on the development of young children with special needs who live in rural communities is unknown (Sontag, 1996). The researcher seeks a deeper understanding of the social, economic, cultural, familial, and community-level factors, which alone and in combination, influence both the cognitive and linguistic developmental processes for young children with special needs. As a result of this research project, a new application of Bronfenbrenners (1992) ecological model will be developed to describe the relationships between developmental and environmental factors within family and rural community contexts for young children with special needs.

Figure 1. Bronfenbrenners modified Bioecological Systems Theory diagram

Goal 2. To design child- and family-centered interventions that can be implemented in multiple settings. An innovative, interdisciplinary (medical, educational, familial, and community-related) model designed to measure specific, individualized child cognitive and linguistic skills will be created. Researchers who examine the pathways and potential intervening mechanisms between individual child development and ecological contexts have the potential to influence policy development, including policies regarding childcare, welfare reform, early childhood education, and social services, which have a great impact on poor families and their children (Bronfenbrenner, 1974). A collaborative program designed to maximize partnerships within the medical home and introduce innovative techniques for enhancing cognitive and linguistic development for children with special needs will be developed as a result of this research project.

2 Research Strategy: Significance Critical Barriers. Social, economic, cultural, familial, and community level factors and how those interactions influence the early cognitive and linguistic development of children with special needs is critical to understanding the impact of available services and the public policies that govern those services. Researchers have documented the negative associations between low family socioeconomic status and ethnic minority status and childrens language development (Pungello, Iruka, Dotterer, Koonce, & Reznick, 2009). Exposure to poverty during early childhood has a more detrimental effect on childhood cognitive ability than exposure to poverty during early adolescence (Najman, Hayatbaskhsh, Heron, Bor, OCallaghan, & Williams, 2009). According to the USDA Economic Research Service (2010), the average yearly income for all Arizonans in 2007 was $32,833 although rural per-capita income lagged at $24,391. In 2008, researchers estimated an existing poverty rate of 20.0% in rural Arizona, compared to a 14.1% poverty rate in urban areas of the state (USDA-ERS, 2010). The additional layer of risk to childrens development may be illuminated through research with children in poverty as well as studies that include both children from low and high socioeconomic status. Contextual factors may result in resiliency; low-intensity interventions that fail with the most disadvantaged children may be effective with children with families from higher socioeconomic status, or vice versa (Chang, Park, Singh, & Sung, 2009). Children's cognitive, neurobiological, socio-emotional, and physical development is influenced by social, economic, cultural, familial and community-level factors, or the ecological context in which they grow up. Specifically, Bronfenbrenner (1977) and his colleagues, in their bioecological model, noted the influence of the mechanisms of development, called proximal processes, on the elements of the child's proximal and distal environments. Parents who are responsive and emotionally supportive provide an interactive environment for young children to engage in stimulating and rewarding verbal and nonverbal exchanges (Pungello, Iruka, Dotterer, Koonce, & Reznick, 2009). Chang, Park, Singh, and Sung (2009) discovered children had higher Bayley Mental Developmental Index scores when mothers were involved in Head Start parent programs and provided more linguistic and cognitive stimulation at home. Researchers who have studied cognitive development in normally developing children have informed the public about the progressive nature of cognitive developmental patterns (Sontag, 1996). Examining young children with developmental disabilities and the bidirectional impact of early intervention that includes the family can help researchers provide meaningful insights into varying cognitive processes (Bronfenbrenner, 1992). The initial stage of language development is a critical period in a young childs life (Bond & Wasik, 2009). From birth to approximately the age of five, typical children acquire about 10,000 vocabulary words, beginning with one-word utterances and ultimately, they communicate in complex sentences. Considerable variability occurs among children in their rate of language acquisition, and a range of developmental and environmental factors are positively and negatively associated with childrens language achievements. Persistent language difficulties for young children with special needs may have little negative impact on academic achievement if these difficulties are resolved by the time of school entry (Justice, Turnbull, Bowles, & Skibbe, 2009). In most instances, families provide numerous opportunities for children to have meaningful,

3 productive conversations with adults. For children living in poverty or worse yet, children with disabilities who live in poverty, language use and modeling opportunities at home may be extremely limited (Hart & Risley, 1995). Improved Scientific Knowledge. Scientific examination of the interplay of biological and environmental factors and their influence on childrens developmental trajectories will help to identify pathways and intervening mechanisms for children growing up in impoverished environments. Another factor to consider is that families living in different contexts may have different needs. For example, Sontag, Schacht, Horn, and Lenze (1993) surveyed 536 families with children who were either developmentally delayed or at risk of developing a disability, to compare the needs of urban and rural parents in the state of Arizona. They found a greater number of parents from rural areas than from urban areas needed information about their childrens educational and physical needs. Families living in rural communities often have to travel long distances for recreational activities, to shop, and often, to access medical care. Jephson, Russel, and Youngblood (2002) noted that families in small rural communities had fewer community service and transportation options than those who lived in urban communities. In addition to caring for their children, families in rural communities who have children with disabilities have the added challenge of accessing available services and therapies their children may need. Specialists often are booked months in advance, and families may wait weeks or months to re-schedule a missed appointment. Children in rural areas are hospitalized more often than children in urban areas due to lack of proximity to medical care (Jephson, Russell & Youngblood, 2002). Professionals in rural communities who work with children who have disabilities also face a variety of challenges. Rural school district personnel and medical professionals are faced with limited availability and selection of medical specialists, special educators, and related service providers. Butera and Maughan (2001) found that parents from rural areas indicated they did not know where to obtain services such as respite care, vision and hearing screening, and speech/language therapy. Changed Treatment and Services. A potential solution to the medical challenges faced by families of children with disabilities is the creation of a medical home to benefit the children, families, health care providers, and school district professionals within the community. Pediatricians from the American Academy of Pediatrics (AAP) believe that the medical care of infants, children, and adolescents should be accessible, continuous, comprehensive, family centered, coordinated, compassionate, and culturally effective (AAP, 2002, p. 184). AAP physicians propose that medical care can be provided in a variety of locationsphysicians offices, hospital outpatient clinics, school-based and school-linked clinics, community health centers, and health department clinics. Medical home professionals ensure that families receive accessible and coordinated care that is integrated with non-health care related services such as education-related therapies (Center for Medical Home Improvement, 2001). Relationships among physicians, families, and community agencies that are crucial to the families and children who require the services can be promoted within the context of the medical home. A critical component of a medical home is family participation and education. The need for quality parent education and support in the early years of a childs

4 development cannot be underestimated, especially for families facing multiple risk factors such as poverty, disabilities, and mental health concerns (McCart, Wolf, Sweeney, & Choi, 2009). Children whose parents are involved actively in their childrens education perform better in reading, writing, and behavior (Chang, Park, Singh, & Sung, 2009). Parental involvement boosts a childs perceived level of competence and autonomy, offers a sense of security and connectedness, and helps a child to internalize educational values (Gonzalez-DeHass et. al., 2005). Research Strategy: Innovation Research and Clinical Practice Paradigm Shifts. With the shift to more patient-centered medical care, medical home professionals are challenged with creating ways to increase parent and child participation during health-care visits (Cox, Smith, Brown, & Fitzpatrick, 2009). The medical home professionals, in close collaboration with the family and the early intervention team, can play a critical role in ensuring that children with developmental delays receive appropriate services (AAP, 2007). Similarly, few researchers in special education have investigated multiple setting influences, such as the joint influence of home, school, medical, and community factors on childrens developmental and academic competence (Sontag, 1996). Novel Methodology. The proposed methods are novel in the field of medicine as historically, medical researchers have focused more specifically on randomized, clinical trials and pediatric medical procedures rather than family-based interventions for children with special needs. Medical home professionals are charged with being aware of the broad array of family needs and facilitating the familys access to support (Cooley, 2004, p. 1110). The proposed research project will enhance the medical and special education literature by introducing collaborative, family-based interventions for young children with special needs. Redefined Theoretical Application. In addition to the importance of multiple setting influences on child development, Bronfenbrenner (1992), in his extended ecological model, showed how development is a joint function of environmental influences and child characteristics, and provided justification for the adoption of more complex extended programs of research necessary to advance knowledge and practice within special education. A critical feature of Bronfenbrenners theory that differentiates it from other ecological models of human development is the notion of multiperson systems of interaction and the direct and indirect developmental effects of the interrelations between these settings (p. 327). In his most recent discussion of the ecological paradigm, Bronfenbrenner (1992) clarifies the contribution of the individual to the developmental process. That is, events and activities at the level of the macrosystem, the overarching patterns of the culture or subculture, potentially influence the nature of the personal interaction at the level of the microsystem, the complex set of relations between the developing person and the immediate environment. A potential new application of Bronfenbrenners (1979, 1992) theoretical concepts is proposedinvestigating bidirectional influences between children with special needs and their parents within the context of a rural medical home. Research Strategy: Approach Strategy. The proposed project has been planned in collaboration with three pediatricians who are employed by the Pediatric Center of Excellence (PCE), a medical home in Douglas, Arizona. Jody M. Pirtle will direct the project and will devote 100% of

5 her time to these activities for the intervention period of 16 weeks. The pediatricians will spend 5% of their time over the course of the project to discuss progress with the Project Director. The purpose of this research is to expand the body of research within special education and medical home implementation by (a) examining the ecological contexts in which children grow up and the bi-directional biological and environmental factors that influence child cognitive and linguistic development and (b) designing, describing, and implementing collaborative child- and family-centered interventions in multiple settings. More specifically, three research questions will be addressed: 1. Within the context of a medical home, what child characteristics (biological, cognitive, and linguistic), environmental factors (family, parental, poverty, neighborhood, medical, educational), and their interactions moderate or mediate the impact of early interventions on the development of young children who have identified cognitive and language delays? 2. What are the critical elements/components of a child- and family-centered intervention for young children who have identified cognitive and language delays that is implemented within the context of a medical home and extended to the home settings? 3. What changes in cognitive and linguistic development are observed in young children who have identified cognitive and language delays when their parents are active participants in the intervention process? Methodology. The proposed research will include 30 families who have children with identified cognitive and language delays. The participants will be assigned randomly to three groups of ten (see table). Intervention will take place at the PCE as well as in the childrens homes. Using the Center for Medical Home Implementation Family Survey, the Project Director will interview parents to (a) gather child developmental and familial history, (b) identify biological and environmental factors that will be used in further analysis, and (c) uncover concerns and potential goals for the intervention period. A norm-referenced assessment (PLS-4, BDI-2, AGS, or DIAL-3) will be used to test the child participants. After the interviews are complete, the Project Director will test each child. After the results are explained, the parents and the Project Director will agree upon one cognitive and one language goal for the intervention period. Each phase of the intervention will be four weeks in length, for a total of eight weeks. All participants will receive intervention at the clinic for the entire eight weeks. During the first phase, the Project Director together with Groups 1 and 3 will implement the agreed-upon intervention inside the PCE Therapy Play Room and the family will employ the intervention in the home. The researcher and the family will collect data. The researcher will address fidelity of implementation through the use of pictures and videosboth will be obtained during the clinic portion of the intervention and then provided to the parents to view at home. The percentage of correct implementation will be determined by having families demonstrate intervention implementation at the clinic. During this first phase of the intervention, Group 2 children and families will receive only intervention at the clinic; families will not be asked to collect data or follow through with intervention implementation in the home during this phase.

6 Once the first phase of the intervention is complete, the Project Director will test each child. Groups will then switch and Group 1 will not be asked to implement intervention at home, but Group 2 will. Group 3 will continue receiving intervention at the clinic and implementing the intervention in the home. Once this second phase of intervention is complete, the Project Director will test each child. Finally, a maintenance assessment will be taken two weeks after intervention. The Project Director will collect data sheets when each family visits the clinic (twice per week) and benchmarks (% of goal attainment for each child) will be recorded. Table 1. Research Design
Selection Testing Intervention Testing Intervention Testing Maintenance

Group 1 Group 2 Group 3

O1 O5 O9

Xa Xb Xa

O2 O6 O10

Xb Xa Xa

O3 O7 O11

O4 O8 O12

Note. O = assessment of child participants, Xa = intervention at clinic and in the home, Xb = intervention at clinic only Analysis. During the intervention, responses to interview questions will be verified with parents to ensure answers have been recorded correctly. To answer research question one, the Project Director will analyze the responses to interview questions using qualitative software to identify common themes found within the responses. Additionally, relationships between parents responses and childrens performance during the intervention will be analyzed. To answer research question two, the Project Director will document the steps taken during the intervention and compare and contrast to interventions found in related literature. Additionally, the researcher will confirm findings with participants and pediatricians to create a program for use at the PCE. To answer research question three, the Project Director will use quantitative software to analyze childrens scores in both raw score and percentage frequency distribution tables. Relationships between childrens performance on assessments will be analyzed. Feasibility. Although the proposed research is in the early stages of development, feasibility already has been established as the researcher conducted a similar, but smaller scale, exploratory study in July 2010 that included 14 children with language delays and their families. Parents indicated satisfaction and children demonstrated growth during the four week targeted language intervention. All participants expressed a desire for the program to continue. Hazardous Procedures, Situations, or Materials. At this time, no procedures, situations, or materials are perceived to be hazardous to personnel; therefore, precautions do not need to be exercised.

7 Human Subjects Section. IRB paperwork has been submitted to the University of Arizonas Human Subjects committee. Necessary precautions have been taken to protect participants from any risks associated with the research and the project goals and approach are justified. The roles and responsibilities for the PI and Project Director have been outlined and the aims of the project align with the expertise of each of person involved. 4.1.1 a. Human Subjects Involvement, Characteristics, and Design. The proposed project includes minorities, members of both sexes, and children with diagnosed language and cognitive delays. Children with diagnosed language and cognitive delays and their families will participate in the proposed project. They will come to the clinic twice per week for sixteen weeks for language and cognitive intervention and will implement intervention at home as well. The population will be representative of the community in which the participants live but child participants will be limited to those between the ages of 3 and 5 years old. Participants will be recruited by the pediatricians and flyers will be posted at the PCE. Any children not between the ages of 3 and 5 years old, or those not diagnosed with both a language and cognitive delay will be excluded from participation. All family participants will sign consent and children will asked to give verbal assent. Participants will be randomly assigned to one of three intervention groups. Participation in the research project is strictly voluntary and participants may withdraw at any time. The research will be conducted in collaboration with the Pediatric Center of Excellence pediatricians. b. Sources of Materials. Research material data will include pre- and post-test data from the norm referenced assessments for child participants. Only the pediatrician and PIs will have access to individually identifiable private information about human subjects. Data will be kept in a locked file cabinet at the PCE during intervention and the computer used will be password protected and only the Project Director will have access to the password. c. Potential Risks. No potential risks other than those experienced in everyday life are expected. No alternative treatments are offered. 4.1.2 Adequacy of Protection Against Risks. a. Recruitment and Informed Consent. Recruitment will occur by word of mouth from the pediatricians and flyers posted at the PCE. Once participants agree to participate, informed consent will be provided in the families native language. All participants will be required to provide consent and child participants will be required to provide verbal assent in order to participate. b. Protections Against Risk. Every attempt will be made to protect against and minimize potential risks. Confidentiality will be protected through the assignment of numbers to each participant. All identifying information will be removed and replaced with numbers known only to the Project Director. No anticipated medical or professional intervention is expected. 4.1.3 Potential Benefits of the Proposed Research to Human Subjects and Others. Potential benefits from the proposed research include detailed cognitive and language assessments for all child participants and language and cognitive strategies for families to use to address language and cognitive deficits in their children. Risks are minimal and it is expected that the benefits outweigh any risks that might be involved. 4.1.4 Importance of the Knowledge to be Gained. Families will be provided with detailed information regarding their childs language and cognitive skills and individualized interventions to address any concerns. The medical home and special education professionals will benefit as the intervention has the potential to provide rationale and support for future family- and child-centered intervention programs.