Ann Turnbull | University of Kansas (original) (raw)

Journal Articles by Ann Turnbull

Research paper thumbnail of Kyzar, K., Chiu, C., Kemp, P., Aldersey, H., Turnbull, A., & Lindeman, D. (2014). Feasibility of an online professional development program for early intervention practitioners. Infants and Young Children, 27(2), 174-191.

Kyzar, K., Chiu, C., Kemp, P., Aldersey, H., Turnbull, A., & Lindeman, D. (2014). Feasibility of an online professional development program for early intervention practitioners. Infants and Young Children, 27(2), 174-191.

This article reports findings from 2 studies situated within a larger scope of design research on... more This article reports findings from 2 studies situated within a larger scope of design research on a professional development program, Early Years, for Part C early intervention practitioners, working with families in home and community settings. Early Years includes online modules and on-site mentor coaching, and its development has been grounded in principles of adult learning, evidence-based e-learning practices, and regulations for Web accessibility. The studies presented in this article focused on evaluating feasibility of the first online module within the Early Years program, Evidence-Based Practice, and its accompanying on-site mentor coaching component. Participants found most instructional elements to be helpful whereas rating the length of online sessions as less practical. Salient interview findings regarding the mentor coaching component included the importance of orientation and reference materials and incentivized professional development. This study contributes to the literature on early childhood professional development that includes a strong family-focused component.

Research paper thumbnail of Francis, G.L., Gross, J.M.S., Turnbull, A.P., Turnbull, H.R. (2014). Understanding barriers to competitive employment: A family perspective. Inclusion, 2(1), 37-53

This study reports the results of a survey and interviews with families who attended Family Emplo... more This study reports the results of a survey and interviews with families who attended Family Employment Awareness Training (FEAT), a training designed to increase expectations for competitive employment and knowledge about employment resources among families who have members with disabilities, to determine their perceptions of barriers to competitive employment for people with individualized support needs (ISN). Analysis of survey and interview data identified barriers related to (a) characteristics of people with ISN, (b) agencies and programs, (c) families, (d) expectations, (e) employers, and (f) the economy. This study uses an ecological framework (Bronfenbrenner, 1979, 1986) to organize the findings. We also discuss implications for practice and policy, including recommendations for improving education and support for people with ISN, families, and professionals in the micro-, exo-, and macrosystems.

Research paper thumbnail of Aldersey, H.M., Turnbull, H.R., & Turnbull, A.P. (2014).  Intellectual and developmental disabilities in Kinshasa, Democratic Republic of the Congo: Casualty and implications for resilience and support. Intellectual and Developmental Disabilities, 52(3), 220-233.

This article reports results of a 7-month qualitative study on intellectual and related developme... more This article reports results of a 7-month qualitative study on intellectual and related developmental disabilities in Kinshasa, Democratic Republic of the Congo, particularly as they relate to the causes and meaning of intellectual and developmental disabilities (IDD). This study raises important questions related to the understanding of resilience of persons affected by IDD and the nature and purpose of support they use or desire.

Research paper thumbnail of Meral, B.F., Cavkaytar, A., Turnbull, A.P., & Wang, M. (2013). Family quality of life of Turkish families who have children with intellectual disabilities and autism. Research and Practice for Persons with Severe Disabilities, 38(4), 233-246.

This study examined family quality of life (FQOL) of Turkish families who have children with inte... more This study examined family quality of life (FQOL) of Turkish families who have children with intellectual disabilities (ID) and autism. To research the perceptions of FQOL and relevant predictive relationships, data were gathered from 3,009 families who have children with ID and autism. The data were collected by using a Sociodemographic Family Information Form, Beach Center Family Quality of Life Scale, and the Family Support Scale. The FQOL and subdomain perceptions of families who have children with ID and autism were slightly above a moderate level; the highest perceptions were in the Family Interaction domain, and the lowest perceptions were in the Physical/Material Well-Being domain. We computed significant positive correlations between overall FQOL perception and family social support domains as well as between overall FQOL perception and sociodemographic variables. In the prediction of overall FQOL perception, the variable that mostly explained total variance was emotional support. For the covariates of care support, household/income, information support, socioeconomic status, age of child, type of disability, and affiliation support, the ability to predict FQOL was weak. Conversely, age of mothers, employment status of mothers, and material support domain were not important predictors in FQOL.

Research paper thumbnail of Francis, G., Gross, J.M.S., Turnbull, A.P., & Turnbull, H.R. (2013). The Family Empowerment Awareness Training (FEAT): A mixed-method follow-up. Journal of Vocational Rehabilitation, 39(3), 167-181.

Although competitive employment (i.e., employment in community settings among peers without disab... more Although competitive employment (i.e., employment in community settings among peers without disabilities for minimum wage or higher) is associated with numerous benefits for individuals with disabilities (Johannesen, McGrew, Griss, & Born, 2007), people with disabilities are underrepresented in the competitive workforce (National Disability Rights Network, 2011).

Research paper thumbnail of Chiu, C., Turnbull, A.P., Summers, J.A. (2013). What families need: Validation of the Family Needs Assessment for Taiwanese families of children with intellectual disability and developmental delay. Research and Practice for Persons with Severe Disabilities, 38(4), 247-258.

This study documented the process of developing and validating the Family Needs Assessment (FNA),... more This study documented the process of developing and validating the Family Needs Assessment (FNA), a seven-factor 73-item measure developed for research and practice, using a sample of Taiwanese families. In developing the FNA, the research team identified a theoretical basis for family needs, used literature and qualitative results in generating items, ensured culturally and linguistically accurate translation of the measure, and revised the measure based on results from pilot tests and cognitive interviews. Although a confirmatory factor analysis is necessary to support final validity, results from this study provide a foundation for understanding Taiwanese family needs. According to the results, the domains with highest needs are Hope (i.e., anticipating and achieving positive outcomes) and Disability-Related Services (i.e., getting services and teaching the child with disabilities). Findings from this study indicate that the FNA, developed as a comprehensive, contemporary, accessible, and culturally appropriate tool, can contribute to the disability-related field in research and practice.

Research paper thumbnail of Kyzar, K., Turnbull, A.P., & Summers, J.A. (2012). The relationship of family support to family outcomes: A synthesis of key findings from research on severe disability. Research & Practice for Persons with Severe Disabilities, 37(1), 1-13.

There has been a gradual shift from a deficit to a support model for understanding disability ove... more There has been a gradual shift from a deficit to a support model for understanding disability over the last two decades. Although more attention is focused on supports at the individual level, policy has provided for the provision of family support. Despite this policy, families' needs for support are on the rise; and research suggests that families of children with severe and multiple disabilities may be at the highest risk for unmet need. This review synthesizes literature published between 1990 and 2010 that reported the relationship between family support and family outcomes (family functioning, family satisfaction, family quality of life, and family stress) for families of children with moderate to severe disabilities. We also report the conceptualization and measurement of family support in the research literature included in the review. Findings showed that (a) across studies, family support was significantly related to family outcomes; (b) there was wide variability in the types and sources of support assessed; and (c) operational definitions of family support were lacking. A discussion of the findings, including limitations of the review, themes, and implications are provided.

Research paper thumbnail of Gross, J.M.S., Wallace, L., Blue-Banning, M., et al. (2012). Examining the experiences and decisions of parents/guardians: Participant directing the supports and services of adults with significant intellectual and developmental disabilities. Journal of Disability Policy, 24(2), 88-101.

Participant direction is a service delivery model in which the consumer of public benefits, or hi... more Participant direction is a service delivery model in which the consumer of public benefits, or his or her surrogate decision maker, exercises some level of choice and control over the consumer’s supports and services. In this case study, the authors examined the decisions and experiences of parents/guardians who directed supports and services for an adult with significant intellectual and developmental disabilities (SIDD). Respondents included the parents/guardian of the adult as well as others in the circle of support identified by the parents/guardians. Data analysis revealed an overarching theme in which respondents perceived participant direction as a means to achieve an end, with the end being their desired outcomes for the adult with SIDD. Implications for policy include developing and providing supportive services to adults with SIDD and their parents/guardians due to the increased responsibilities associated with directing supports and services for the adult with a SIDD.

Research paper thumbnail of Turnbull, A., & Turnbull, R. (2011). Right science and right results: Lifestyle change, PBS, and human dignity. Journal of Positive Behavior Interventions, 13(2), 69-77.

This article provides an in-depth analysis of the comprehensive supports necessary for an adult w... more This article provides an in-depth analysis of the comprehensive supports necessary for an adult with multiple disabilities and significant problem behavior to experience an inclusive adulthood. Written from the perspective of parents, the article highlights “lessons learned” about how to implement and finance comprehensive supports across domains of home living, work, friendships, community connections, wellness, as well as additional areas. Practice tips are provided in terms of potential replication.

Research paper thumbnail of Epley, P.H., Summers, J.A., & Turnbull, A.P. (2011). Family outcomes of early intervention: Families’ perceptions of need, services, and outcomes. Journal of Early Intervention, 33(3), 201-219.

Relationships between parent ratings of Part C/early intervention (EI) services and family outcom... more Relationships between parent ratings of Part C/early intervention (EI) services and family outcomes for families of young children with disabilities were examined—specifically, the early childhood outcomes (ECO)–recommended family outcomes and family quality of life (FQOL). Measures included the Early Childhood Services Survey, the ECO Center Family Outcomes Survey, and the Beach Center Family Quality of Life Scale. Findings support a logic-model relationship between parent ratings of Part C/EI services, ECO-recommended family outcomes, and FQOL. Parent ratings of Part C/EI services were found to predict immediate family outcomes as measured by ECO-recommended family outcomes, and ECO-recommended family outcomes, in turn, predicted the broader outcome of enhanced FQOL. Implications for EI practice and evaluation are discussed.

Research paper thumbnail of Turnbull, A., Zuna, N., Hong, J.Y., Hu, X., Kyzar, K., Obremski, S., Summers, J.A.…& Stowe, M. (2010). Knowledge-to-action guides for preparing families to be partners in making educational decisions. Teaching Exceptional Children, 42(3), 42-53.

Turnbull, A., Zuna, N., Hong, J.Y., Hu, X., Kyzar, K., Obremski, S., Summers, J.A.…& Stowe, M. (2010). Knowledge-to-action guides for preparing families to be partners in making educational decisions. Teaching Exceptional Children, 42(3), 42-53.

Research paper thumbnail of Epley, P., Summers, J.A., & Turnbull, A. (2010). Characteristics and trends in family-centered conceptualizations. Journal of Family Social Work, 13, 269-285.

Early-intervention and early childhood professionals have long considered family-centered service... more Early-intervention and early childhood professionals have long considered family-centered service delivery best practice. Exactly what family-centered practice means, however, remains unclear. The lack of consensus in defining family centeredness results in incongruence in the manner and degree to which professionals implement family centeredness. This review of the literature examines current conceptualizations of family-centered practice in an effort to determine whether there is a common definition; and, if so, how that definition has changed over the past decade. The authors found that, though the key elements of family centeredness (i.e., family as the unit of attention, family choice, family strengths, family–professional relationship, and individualized family services) have remained consistent, the emphasis has shifted from the family as the unit of attention to family–professional relationship and family choice. Implications for early intervention practice and research are discussed.

Research paper thumbnail of Epley, P., Gotto, G.S., Summers, J.A., Brotherson, M.J., Turnbull, A.P., & Friend, A. (2010). Supporting families of young children with disabilities: Examining the role of administrative structures. Topics in Early Childhood Special Education, 30(1), 20-31.

Epley, P., Gotto, G.S., Summers, J.A., Brotherson, M.J., Turnbull, A.P., & Friend, A. (2010). Supporting families of young children with disabilities: Examining the role of administrative structures. Topics in Early Childhood Special Education, 30(1), 20-31.

This article presents findings from two early intervention agencies examining how administrative ... more This article presents findings from two early intervention agencies examining how administrative structures affect providers’ ability to serve families of young children with disabilities. Based on previous research identifying three administrative structures (i.e., vision/leadership, organizational climate, and resources), this article illustrates the relationship between administrative structures, provider practices, and family supports and services. Findings include (a) the role of administrators’ knowledge and vision influencing provider practices, (b) the importance of organizational climates that foster partnership and peer support for implementing and evaluating practices, (c) the effects of resource allocation decisions on familysupports and services, and (d) the need for accountability to ensure effective practices and family supports and services.

Research paper thumbnail of Brotherson, M.J., Summers, J.A., Naig, L.A., Kyzar, K., Friend, A., Epley, P., Gotto, G.S., & Turnbull, A.P. (2010). Partnership patterns: Addressing emotional needs in early intervention. Topics in Early Childhood Special Education, 30(1), 32-45.

Brotherson, M.J., Summers, J.A., Naig, L.A., Kyzar, K., Friend, A., Epley, P., Gotto, G.S., & Turnbull, A.P. (2010). Partnership patterns: Addressing emotional needs in early intervention. Topics in Early Childhood Special Education, 30(1), 32-45.

Home visiting in early intervention is the primary model for delivering services and building par... more Home visiting in early intervention is the primary model for delivering services and building partnerships with children and families. Using interviews with early interventionists and family members, this study investigated the extent to which families’ and professionals’ emotional needs were met during home visits and what factors contributed to or interfered with the formation of an emotionally supportive partnership. The findings were that the types of emotional needs experienced to one degree or another by both families and professionals included a need to have hope for the child, a sense of urgency to provide interventions, a feeling of being challenged by multiple issues, and a sense of overload. Second, the authors found that the quality of the partnership was dependent on the degree to which there was a match or mismatch in emotional needs between the family and the professional. The data highlight the need to address the emotional needs of both families and early interventionists to build a supportive family-centered partnership. Discussion focuses on the practice and research issues of these findings.

Research paper thumbnail of Zuna, N., Selig, J. P., Summers, J. A., & Turnbull, A. P. (2009). Confirmatory factor  analysis of a family quality of life scale for families of children without disabilities.  Journal of Early Intervention, 31, 111-125.

Recently, within the field of special education, attention has been accorded to the conceptualiza... more Recently, within the field of special education, attention has been accorded to the conceptualization and measurement of family outcomes. The Family Quality of Life (FQOL) Scale is an instrument that can be used to measure family outcomes for families who have children with disabilities, and it has been demonstrated to have psychometric validity. To expand the usability of the FQOL Scale, the authors tested its measurement properties for families of kindergarten children without disabilities. Results from this new population of interest indicated adequate fit of the sample data to the theoretical model. Policy and program implications are discussed.

Research paper thumbnail of Zuna, N., Turnbull, A. P., & Summers, J. A. (2009). Family quality of life: Moving from  measurement to application. Journal of Policy and Practice in Intellectual Disabilities, 6, 25-31.

Noting the absence of sound theoretical underpinnings for family quality of life (FQoL) research ... more Noting the absence of sound theoretical underpinnings for family quality of life (FQoL) research and work, the authors note that, to guide FQoL practice, research findings must be schematically organized so as to enable practitioners to implement empirical findings effectively. One way to meet this goal is to introduce a theoretical model that clearly displays and describes the relationships among variables that explain FQoL. Thus, the authors propose a theory of FQoL designed to explain how various concepts—systems, performance, individuals, and family units—influence variations in FQoL. In defining each of the concepts, they describe the theory's application within the context of a family vignette, illustrating how professionals might apply theoretical propositions to their practice. In their application, they stress that the application of the FQoL theory they presented is not an end but rather a developmental stage that leads to further refinement of the FQoL theory. The application and development of this theory is a reciprocal process among researchers, practitioners, and families. Further, their FQoL theoretical model can serve to enable practitioners to examine which family, ecological, and programmatic variables are amenable to change to positively impact FQoL. Given this, they assert that FQoL is not a static concept but, instead, ebbs and flows during the course of raising a child with a disability. They call for further collaborative work among workers to continually improve the FQoL theory and to successfully implement it in practice.

Research paper thumbnail of Lee, S.H., Turnbull, A.P., & Zan, F. (2009). Family perspectives: Using a cultural prism to understand families from Asian cultural backgrounds. Intervention in School and Clinic, 45(2), 99-108.

Educators can better serve students who come from diverse cultural backgrounds by understanding t... more Educators can better serve students who come from diverse cultural backgrounds by understanding the differing cultural values of these students and their families. This article explores different cultural perspectives using a cultural prism approach, focused most specifically on the Korean and Chinese cultures.

Research paper thumbnail of Friend, A., Summers, J.A., & Turnbull, A.P. (2009). Impacts of family support in early childhood intervention research. Education and Training in Developmental Disabilities, 44(4), 453-470.

The purpose of this paper is to review intervention research to determine the types of family sup... more The purpose of this paper is to review intervention research to determine the types of family support that are reported and evaluated in early childhood. This review includes 26 articles evaluating (a) parent training programs; (b) general family-centered practice models which offer comprehensive supports; (c) peer support; (d) two-generation programs; and (e) respite care. In the article, we focus our discussion on: (a) the definitions or description of family support, (b) the family variables or impacts evaluated and their findings, and (c) the link between support and impacts to both the ECO outcomes and the family quality of life domains. This review indicates a need for specific and consistent terminology in defining family support in the early intervention field. Further, a family support framework to guide future research to investigate both long-term and short-term outcomes for families is warranted.

Research paper thumbnail of Jackson, C.W., Traub, R.J., & Turnbull, A.P. (2008).  Parents' experiences with childhood deafness: Implications for family-centered services.  Communication Disorders Quarterly, 29(2), 82-98.

In response to the need for family-centered follow-up, this study examined parents’ experiences w... more In response to the need for family-centered follow-up, this study examined parents’ experiences with deafness after early identification. Qualitative inquiry methods were used to explore and describe the perceptions and experiences of nine parents of children identified with severe to profound deafness. Parents participated in face-to-face conversations and interviews by phone and e-mail. Naturalistic inquiry methods were used to identify themes in family experiences including reactions to diagnosis; decision making; impact of deafness on family interactions, family time, and the child; positive experiences in early intervention; and desired support services. Implications and recommendations for early intervention programs are discussed.

Research paper thumbnail of Wang, M., McCart, A., & Turnbull, A. (2007). Implementing positive behavior support with Chinese American families: Enhancing cultural competence. Journal of Positive Behavioral Interventions, 9(1), 38-51.

In positive behavior support (PBS) practices, one critical issue involves helping professionals u... more In positive behavior support (PBS) practices, one critical issue involves helping professionals understand and respect the values of families from culturally diverse backgrounds. This article summarizes embedded cultural values of PBS represented in four key features of the PBS process: collaborative partnerships, functional assessment, contextual fit, and meaningful lifestyle outcomes. With acknowledgment of acculturation, the contrast between Chinese cultural values and embedded PBS values is illustrated in the context of implementing PBS for Chinese American families.

Research paper thumbnail of Kyzar, K., Chiu, C., Kemp, P., Aldersey, H., Turnbull, A., & Lindeman, D. (2014). Feasibility of an online professional development program for early intervention practitioners. Infants and Young Children, 27(2), 174-191.

Kyzar, K., Chiu, C., Kemp, P., Aldersey, H., Turnbull, A., & Lindeman, D. (2014). Feasibility of an online professional development program for early intervention practitioners. Infants and Young Children, 27(2), 174-191.

This article reports findings from 2 studies situated within a larger scope of design research on... more This article reports findings from 2 studies situated within a larger scope of design research on a professional development program, Early Years, for Part C early intervention practitioners, working with families in home and community settings. Early Years includes online modules and on-site mentor coaching, and its development has been grounded in principles of adult learning, evidence-based e-learning practices, and regulations for Web accessibility. The studies presented in this article focused on evaluating feasibility of the first online module within the Early Years program, Evidence-Based Practice, and its accompanying on-site mentor coaching component. Participants found most instructional elements to be helpful whereas rating the length of online sessions as less practical. Salient interview findings regarding the mentor coaching component included the importance of orientation and reference materials and incentivized professional development. This study contributes to the literature on early childhood professional development that includes a strong family-focused component.

Research paper thumbnail of Francis, G.L., Gross, J.M.S., Turnbull, A.P., Turnbull, H.R. (2014). Understanding barriers to competitive employment: A family perspective. Inclusion, 2(1), 37-53

This study reports the results of a survey and interviews with families who attended Family Emplo... more This study reports the results of a survey and interviews with families who attended Family Employment Awareness Training (FEAT), a training designed to increase expectations for competitive employment and knowledge about employment resources among families who have members with disabilities, to determine their perceptions of barriers to competitive employment for people with individualized support needs (ISN). Analysis of survey and interview data identified barriers related to (a) characteristics of people with ISN, (b) agencies and programs, (c) families, (d) expectations, (e) employers, and (f) the economy. This study uses an ecological framework (Bronfenbrenner, 1979, 1986) to organize the findings. We also discuss implications for practice and policy, including recommendations for improving education and support for people with ISN, families, and professionals in the micro-, exo-, and macrosystems.

Research paper thumbnail of Aldersey, H.M., Turnbull, H.R., & Turnbull, A.P. (2014).  Intellectual and developmental disabilities in Kinshasa, Democratic Republic of the Congo: Casualty and implications for resilience and support. Intellectual and Developmental Disabilities, 52(3), 220-233.

This article reports results of a 7-month qualitative study on intellectual and related developme... more This article reports results of a 7-month qualitative study on intellectual and related developmental disabilities in Kinshasa, Democratic Republic of the Congo, particularly as they relate to the causes and meaning of intellectual and developmental disabilities (IDD). This study raises important questions related to the understanding of resilience of persons affected by IDD and the nature and purpose of support they use or desire.

Research paper thumbnail of Meral, B.F., Cavkaytar, A., Turnbull, A.P., & Wang, M. (2013). Family quality of life of Turkish families who have children with intellectual disabilities and autism. Research and Practice for Persons with Severe Disabilities, 38(4), 233-246.

This study examined family quality of life (FQOL) of Turkish families who have children with inte... more This study examined family quality of life (FQOL) of Turkish families who have children with intellectual disabilities (ID) and autism. To research the perceptions of FQOL and relevant predictive relationships, data were gathered from 3,009 families who have children with ID and autism. The data were collected by using a Sociodemographic Family Information Form, Beach Center Family Quality of Life Scale, and the Family Support Scale. The FQOL and subdomain perceptions of families who have children with ID and autism were slightly above a moderate level; the highest perceptions were in the Family Interaction domain, and the lowest perceptions were in the Physical/Material Well-Being domain. We computed significant positive correlations between overall FQOL perception and family social support domains as well as between overall FQOL perception and sociodemographic variables. In the prediction of overall FQOL perception, the variable that mostly explained total variance was emotional support. For the covariates of care support, household/income, information support, socioeconomic status, age of child, type of disability, and affiliation support, the ability to predict FQOL was weak. Conversely, age of mothers, employment status of mothers, and material support domain were not important predictors in FQOL.

Research paper thumbnail of Francis, G., Gross, J.M.S., Turnbull, A.P., & Turnbull, H.R. (2013). The Family Empowerment Awareness Training (FEAT): A mixed-method follow-up. Journal of Vocational Rehabilitation, 39(3), 167-181.

Although competitive employment (i.e., employment in community settings among peers without disab... more Although competitive employment (i.e., employment in community settings among peers without disabilities for minimum wage or higher) is associated with numerous benefits for individuals with disabilities (Johannesen, McGrew, Griss, & Born, 2007), people with disabilities are underrepresented in the competitive workforce (National Disability Rights Network, 2011).

Research paper thumbnail of Chiu, C., Turnbull, A.P., Summers, J.A. (2013). What families need: Validation of the Family Needs Assessment for Taiwanese families of children with intellectual disability and developmental delay. Research and Practice for Persons with Severe Disabilities, 38(4), 247-258.

This study documented the process of developing and validating the Family Needs Assessment (FNA),... more This study documented the process of developing and validating the Family Needs Assessment (FNA), a seven-factor 73-item measure developed for research and practice, using a sample of Taiwanese families. In developing the FNA, the research team identified a theoretical basis for family needs, used literature and qualitative results in generating items, ensured culturally and linguistically accurate translation of the measure, and revised the measure based on results from pilot tests and cognitive interviews. Although a confirmatory factor analysis is necessary to support final validity, results from this study provide a foundation for understanding Taiwanese family needs. According to the results, the domains with highest needs are Hope (i.e., anticipating and achieving positive outcomes) and Disability-Related Services (i.e., getting services and teaching the child with disabilities). Findings from this study indicate that the FNA, developed as a comprehensive, contemporary, accessible, and culturally appropriate tool, can contribute to the disability-related field in research and practice.

Research paper thumbnail of Kyzar, K., Turnbull, A.P., & Summers, J.A. (2012). The relationship of family support to family outcomes: A synthesis of key findings from research on severe disability. Research & Practice for Persons with Severe Disabilities, 37(1), 1-13.

There has been a gradual shift from a deficit to a support model for understanding disability ove... more There has been a gradual shift from a deficit to a support model for understanding disability over the last two decades. Although more attention is focused on supports at the individual level, policy has provided for the provision of family support. Despite this policy, families' needs for support are on the rise; and research suggests that families of children with severe and multiple disabilities may be at the highest risk for unmet need. This review synthesizes literature published between 1990 and 2010 that reported the relationship between family support and family outcomes (family functioning, family satisfaction, family quality of life, and family stress) for families of children with moderate to severe disabilities. We also report the conceptualization and measurement of family support in the research literature included in the review. Findings showed that (a) across studies, family support was significantly related to family outcomes; (b) there was wide variability in the types and sources of support assessed; and (c) operational definitions of family support were lacking. A discussion of the findings, including limitations of the review, themes, and implications are provided.

Research paper thumbnail of Gross, J.M.S., Wallace, L., Blue-Banning, M., et al. (2012). Examining the experiences and decisions of parents/guardians: Participant directing the supports and services of adults with significant intellectual and developmental disabilities. Journal of Disability Policy, 24(2), 88-101.

Participant direction is a service delivery model in which the consumer of public benefits, or hi... more Participant direction is a service delivery model in which the consumer of public benefits, or his or her surrogate decision maker, exercises some level of choice and control over the consumer’s supports and services. In this case study, the authors examined the decisions and experiences of parents/guardians who directed supports and services for an adult with significant intellectual and developmental disabilities (SIDD). Respondents included the parents/guardian of the adult as well as others in the circle of support identified by the parents/guardians. Data analysis revealed an overarching theme in which respondents perceived participant direction as a means to achieve an end, with the end being their desired outcomes for the adult with SIDD. Implications for policy include developing and providing supportive services to adults with SIDD and their parents/guardians due to the increased responsibilities associated with directing supports and services for the adult with a SIDD.

Research paper thumbnail of Turnbull, A., & Turnbull, R. (2011). Right science and right results: Lifestyle change, PBS, and human dignity. Journal of Positive Behavior Interventions, 13(2), 69-77.

This article provides an in-depth analysis of the comprehensive supports necessary for an adult w... more This article provides an in-depth analysis of the comprehensive supports necessary for an adult with multiple disabilities and significant problem behavior to experience an inclusive adulthood. Written from the perspective of parents, the article highlights “lessons learned” about how to implement and finance comprehensive supports across domains of home living, work, friendships, community connections, wellness, as well as additional areas. Practice tips are provided in terms of potential replication.

Research paper thumbnail of Epley, P.H., Summers, J.A., & Turnbull, A.P. (2011). Family outcomes of early intervention: Families’ perceptions of need, services, and outcomes. Journal of Early Intervention, 33(3), 201-219.

Relationships between parent ratings of Part C/early intervention (EI) services and family outcom... more Relationships between parent ratings of Part C/early intervention (EI) services and family outcomes for families of young children with disabilities were examined—specifically, the early childhood outcomes (ECO)–recommended family outcomes and family quality of life (FQOL). Measures included the Early Childhood Services Survey, the ECO Center Family Outcomes Survey, and the Beach Center Family Quality of Life Scale. Findings support a logic-model relationship between parent ratings of Part C/EI services, ECO-recommended family outcomes, and FQOL. Parent ratings of Part C/EI services were found to predict immediate family outcomes as measured by ECO-recommended family outcomes, and ECO-recommended family outcomes, in turn, predicted the broader outcome of enhanced FQOL. Implications for EI practice and evaluation are discussed.

Research paper thumbnail of Turnbull, A., Zuna, N., Hong, J.Y., Hu, X., Kyzar, K., Obremski, S., Summers, J.A.…& Stowe, M. (2010). Knowledge-to-action guides for preparing families to be partners in making educational decisions. Teaching Exceptional Children, 42(3), 42-53.

Turnbull, A., Zuna, N., Hong, J.Y., Hu, X., Kyzar, K., Obremski, S., Summers, J.A.…& Stowe, M. (2010). Knowledge-to-action guides for preparing families to be partners in making educational decisions. Teaching Exceptional Children, 42(3), 42-53.

Research paper thumbnail of Epley, P., Summers, J.A., & Turnbull, A. (2010). Characteristics and trends in family-centered conceptualizations. Journal of Family Social Work, 13, 269-285.

Early-intervention and early childhood professionals have long considered family-centered service... more Early-intervention and early childhood professionals have long considered family-centered service delivery best practice. Exactly what family-centered practice means, however, remains unclear. The lack of consensus in defining family centeredness results in incongruence in the manner and degree to which professionals implement family centeredness. This review of the literature examines current conceptualizations of family-centered practice in an effort to determine whether there is a common definition; and, if so, how that definition has changed over the past decade. The authors found that, though the key elements of family centeredness (i.e., family as the unit of attention, family choice, family strengths, family–professional relationship, and individualized family services) have remained consistent, the emphasis has shifted from the family as the unit of attention to family–professional relationship and family choice. Implications for early intervention practice and research are discussed.

Research paper thumbnail of Epley, P., Gotto, G.S., Summers, J.A., Brotherson, M.J., Turnbull, A.P., & Friend, A. (2010). Supporting families of young children with disabilities: Examining the role of administrative structures. Topics in Early Childhood Special Education, 30(1), 20-31.

Epley, P., Gotto, G.S., Summers, J.A., Brotherson, M.J., Turnbull, A.P., & Friend, A. (2010). Supporting families of young children with disabilities: Examining the role of administrative structures. Topics in Early Childhood Special Education, 30(1), 20-31.

This article presents findings from two early intervention agencies examining how administrative ... more This article presents findings from two early intervention agencies examining how administrative structures affect providers’ ability to serve families of young children with disabilities. Based on previous research identifying three administrative structures (i.e., vision/leadership, organizational climate, and resources), this article illustrates the relationship between administrative structures, provider practices, and family supports and services. Findings include (a) the role of administrators’ knowledge and vision influencing provider practices, (b) the importance of organizational climates that foster partnership and peer support for implementing and evaluating practices, (c) the effects of resource allocation decisions on familysupports and services, and (d) the need for accountability to ensure effective practices and family supports and services.

Research paper thumbnail of Brotherson, M.J., Summers, J.A., Naig, L.A., Kyzar, K., Friend, A., Epley, P., Gotto, G.S., & Turnbull, A.P. (2010). Partnership patterns: Addressing emotional needs in early intervention. Topics in Early Childhood Special Education, 30(1), 32-45.

Brotherson, M.J., Summers, J.A., Naig, L.A., Kyzar, K., Friend, A., Epley, P., Gotto, G.S., & Turnbull, A.P. (2010). Partnership patterns: Addressing emotional needs in early intervention. Topics in Early Childhood Special Education, 30(1), 32-45.

Home visiting in early intervention is the primary model for delivering services and building par... more Home visiting in early intervention is the primary model for delivering services and building partnerships with children and families. Using interviews with early interventionists and family members, this study investigated the extent to which families’ and professionals’ emotional needs were met during home visits and what factors contributed to or interfered with the formation of an emotionally supportive partnership. The findings were that the types of emotional needs experienced to one degree or another by both families and professionals included a need to have hope for the child, a sense of urgency to provide interventions, a feeling of being challenged by multiple issues, and a sense of overload. Second, the authors found that the quality of the partnership was dependent on the degree to which there was a match or mismatch in emotional needs between the family and the professional. The data highlight the need to address the emotional needs of both families and early interventionists to build a supportive family-centered partnership. Discussion focuses on the practice and research issues of these findings.

Research paper thumbnail of Zuna, N., Selig, J. P., Summers, J. A., & Turnbull, A. P. (2009). Confirmatory factor  analysis of a family quality of life scale for families of children without disabilities.  Journal of Early Intervention, 31, 111-125.

Recently, within the field of special education, attention has been accorded to the conceptualiza... more Recently, within the field of special education, attention has been accorded to the conceptualization and measurement of family outcomes. The Family Quality of Life (FQOL) Scale is an instrument that can be used to measure family outcomes for families who have children with disabilities, and it has been demonstrated to have psychometric validity. To expand the usability of the FQOL Scale, the authors tested its measurement properties for families of kindergarten children without disabilities. Results from this new population of interest indicated adequate fit of the sample data to the theoretical model. Policy and program implications are discussed.

Research paper thumbnail of Zuna, N., Turnbull, A. P., & Summers, J. A. (2009). Family quality of life: Moving from  measurement to application. Journal of Policy and Practice in Intellectual Disabilities, 6, 25-31.

Noting the absence of sound theoretical underpinnings for family quality of life (FQoL) research ... more Noting the absence of sound theoretical underpinnings for family quality of life (FQoL) research and work, the authors note that, to guide FQoL practice, research findings must be schematically organized so as to enable practitioners to implement empirical findings effectively. One way to meet this goal is to introduce a theoretical model that clearly displays and describes the relationships among variables that explain FQoL. Thus, the authors propose a theory of FQoL designed to explain how various concepts—systems, performance, individuals, and family units—influence variations in FQoL. In defining each of the concepts, they describe the theory's application within the context of a family vignette, illustrating how professionals might apply theoretical propositions to their practice. In their application, they stress that the application of the FQoL theory they presented is not an end but rather a developmental stage that leads to further refinement of the FQoL theory. The application and development of this theory is a reciprocal process among researchers, practitioners, and families. Further, their FQoL theoretical model can serve to enable practitioners to examine which family, ecological, and programmatic variables are amenable to change to positively impact FQoL. Given this, they assert that FQoL is not a static concept but, instead, ebbs and flows during the course of raising a child with a disability. They call for further collaborative work among workers to continually improve the FQoL theory and to successfully implement it in practice.

Research paper thumbnail of Lee, S.H., Turnbull, A.P., & Zan, F. (2009). Family perspectives: Using a cultural prism to understand families from Asian cultural backgrounds. Intervention in School and Clinic, 45(2), 99-108.

Educators can better serve students who come from diverse cultural backgrounds by understanding t... more Educators can better serve students who come from diverse cultural backgrounds by understanding the differing cultural values of these students and their families. This article explores different cultural perspectives using a cultural prism approach, focused most specifically on the Korean and Chinese cultures.

Research paper thumbnail of Friend, A., Summers, J.A., & Turnbull, A.P. (2009). Impacts of family support in early childhood intervention research. Education and Training in Developmental Disabilities, 44(4), 453-470.

The purpose of this paper is to review intervention research to determine the types of family sup... more The purpose of this paper is to review intervention research to determine the types of family support that are reported and evaluated in early childhood. This review includes 26 articles evaluating (a) parent training programs; (b) general family-centered practice models which offer comprehensive supports; (c) peer support; (d) two-generation programs; and (e) respite care. In the article, we focus our discussion on: (a) the definitions or description of family support, (b) the family variables or impacts evaluated and their findings, and (c) the link between support and impacts to both the ECO outcomes and the family quality of life domains. This review indicates a need for specific and consistent terminology in defining family support in the early intervention field. Further, a family support framework to guide future research to investigate both long-term and short-term outcomes for families is warranted.

Research paper thumbnail of Jackson, C.W., Traub, R.J., & Turnbull, A.P. (2008).  Parents' experiences with childhood deafness: Implications for family-centered services.  Communication Disorders Quarterly, 29(2), 82-98.

In response to the need for family-centered follow-up, this study examined parents’ experiences w... more In response to the need for family-centered follow-up, this study examined parents’ experiences with deafness after early identification. Qualitative inquiry methods were used to explore and describe the perceptions and experiences of nine parents of children identified with severe to profound deafness. Parents participated in face-to-face conversations and interviews by phone and e-mail. Naturalistic inquiry methods were used to identify themes in family experiences including reactions to diagnosis; decision making; impact of deafness on family interactions, family time, and the child; positive experiences in early intervention; and desired support services. Implications and recommendations for early intervention programs are discussed.

Research paper thumbnail of Wang, M., McCart, A., & Turnbull, A. (2007). Implementing positive behavior support with Chinese American families: Enhancing cultural competence. Journal of Positive Behavioral Interventions, 9(1), 38-51.

In positive behavior support (PBS) practices, one critical issue involves helping professionals u... more In positive behavior support (PBS) practices, one critical issue involves helping professionals understand and respect the values of families from culturally diverse backgrounds. This article summarizes embedded cultural values of PBS represented in four key features of the PBS process: collaborative partnerships, functional assessment, contextual fit, and meaningful lifestyle outcomes. With acknowledgment of acculturation, the contrast between Chinese cultural values and embedded PBS values is illustrated in the context of implementing PBS for Chinese American families.

Research paper thumbnail of Turnbull, A.P., Turnbull, H.R., Wehmeyer, M.L., & Shogren, K. (2015).  Exceptional lives: Special education in today’s schools (8th ed.). Boston, MA: Pearson.

Research paper thumbnail of Turnbull, A.P., Turnbull, H.R., Erwin, E., & Soodak, L., Shogren, K. (2015).  Families, professionals, and exceptionality: Positive outcomes through partnerships and trust (7th ed.). Boston, MA: Merrill/Prentice Hall.

Turnbull, A.P., Turnbull, H.R., Erwin, E., & Soodak, L., Shogren, K. (2015). Families, professionals, and exceptionality: Positive outcomes through partnerships and trust (7th ed.). Boston, MA: Merrill/Prentice Hall.

Research paper thumbnail of Zuna, N.I., Summers, J.A., Turnbull, A.P., Hu, X., & Xu, S. (2010). Theorizing about family quality of life. In R. Kober (Ed.), Enhancing the quality of life for individuals with developmental disabilities: Theory to practice (pp. 241-278). Dordrecht, The Netherlands: Springer.

Zuna, N.I., Summers, J.A., Turnbull, A.P., Hu, X., & Xu, S. (2010). Theorizing about family quality of life. In R. Kober (Ed.), Enhancing the quality of life for individuals with developmental disabilities: Theory to practice (pp. 241-278). Dordrecht, The Netherlands: Springer.

Research paper thumbnail of Enhancing quality of life of families of children and youth with disabilities in the United States

Research paper thumbnail of Turnbull, A.P. (2003).  “Begin with the end in mind”: Individuals with disabilities and their families living life to the fullest. In B.F. Williams (ed.), Directions in early intervention and assessment (pp. 373-392). Spokane Guilds’ School and Neuromuscular Center: Spokane, WA.

Research paper thumbnail of Summers, J.A., Behr, S.K., & Turnbull, A.P. (1988). Positive adaptation and coping strengths of families who have children with disabilities. In G.H.S. Singer & L.K. Irvin (Eds.), Support for caregiving families: Enabling positive adaptation to disability (pp. 27-40).  Baltimore: Paul H. Brookes.

Research paper thumbnail of Chiu, C., Kyzar, K., Zuna, N., Turnbull, A., Summers, J.A., & Gomez, V.A. (2013). Family quality of life. In M.L. Wehmeyer (Ed.), The oxford handbook of positive psychology and disability (pp. 365-392). New York, NY: Oxford University Press, Inc.

Chiu, C., Kyzar, K., Zuna, N., Turnbull, A., Summers, J.A., & Gomez, V.A. (2013). Family quality of life. In M.L. Wehmeyer (Ed.), The oxford handbook of positive psychology and disability (pp. 365-392). New York, NY: Oxford University Press, Inc.

Research paper thumbnail of Teachers as Friendship Facilitators

TEACHING Exceptional Children, 2000

Research paper thumbnail of University Students with Special Needs Speak Out: Improving the Quality of Educational Experiences

Rehabilitation Literature, Oct 1, 1978

Research paper thumbnail of La qualité de vie des familles

Améliorer la qualité de vie des personnes atteintes d’autisme, 2008

Research paper thumbnail of Professionals' Attitudes on Partnering with Families of Children and Youth with Disabilities

Education and Training in Autism and Developmental Disabilities, Sep 1, 2010

Research paper thumbnail of Strategies to increase parent participation in IEP conferences

Exceptional children, 1982

Research paper thumbnail of Impact of Deafness on Family Life: A Review of the Literature

Topics in Early Childhood Special Education, 2004

The presence of deafness in a family has the potential to affect all areas of family life. An und... more The presence of deafness in a family has the potential to affect all areas of family life. An understanding of the impact on family life is critical to addressing all components of the family system in early intervention. This review synthesizes the literature on deafness as it relates to four domains of family quality of life, including family interaction, family resources, parenting, and support for the child who is deaf. Implications for future research are discussed.

Research paper thumbnail of Conceptualization and measurement of family outcomes associated with families of individuals with intellectual disabilities

Mental Retardation and Developmental Disabilities Research Reviews, 2007

The purpose of this review is to (a) document the current status of conceptualizing and measuring... more The purpose of this review is to (a) document the current status of conceptualizing and measuring family outcomes related to having a member with an intellectual disability and (b) determine the extent to which family research focuses on internal family characteristics as contrasted to external family support. The reviewers collected 28 articles using the terms well-being, adaptation, family functioning, or family quality of life in the title. Results of our analyses are presented as a comparison between well-being, adaptation, and family functioning articles in one group and family quality of life articles in a second group. Both groups lacked explicit conceptual definitions, theory, and random/representative samples. The articles placed an undue emphasis on maternal participation, and tended to report a single family member score as representative of the whole family. Two major differences between the groups was a tendency for family quality of life studies to be grounded in conceptual frameworks and focus on new instrument development. Recommendations for future research directions are included.

Research paper thumbnail of Implementing Positive Behavior Support With Chinese American Families: Enhancing Cultural Competence

Journal of Positive Behavior Interventions, 2007

In positive behavior support (PBS) practices, one critical issue involves helping professionals u... more In positive behavior support (PBS) practices, one critical issue involves helping professionals understand and respect the values of families from culturally diverse backgrounds. This article summarizes embedded cultural values of PBS represented in four key features of the PBS process: collaborative partnerships, functional assessment, contextual fit, and meaningful lifestyle outcomes. With acknowledgment of acculturation, the contrast between Chinese cultural values and embedded PBS values is illustrated in the context of implementing PBS for Chinese American families.

Research paper thumbnail of Quality Indicators of Professionals Who Work with Children with Problem Behavior

Journal of Positive Behavior Interventions, 2002

We present the perspectives that emerged from our qualitative data. Sixteen focus groups were con... more We present the perspectives that emerged from our qualitative data. Sixteen focus groups were conducted with 69 families of children with disabilities. From a larger study addressing partnerships between families and professionals, the data analyzed in this article focus on quality indicators of professionals in their work with children who experience challenging behavior. Findings from the qualitative analysis are organized into three themes: (a) respect for children, (b) skills to meet special needs, and (c) commitment.

Research paper thumbnail of Editorial for JIDR special issue on family research ? December 2006

Journal of Intellectual Disability Research, 2006

Research paper thumbnail of Promoting Self-determination in Young Children With Disabilities

Infants & Young Children, 2006

ABSTRACT

Research paper thumbnail of Parent to Parent programs: A unique form of mutual support

Infants & Young Children, 1995

Research paper thumbnail of Parents' Experiences With Childhood Deafness: Implications for Family-Centered Services

Communication Disorders Quarterly, 2008

In response to the need for family-centered follow-up, this study examined parents&am... more In response to the need for family-centered follow-up, this study examined parents' experiences with deafness after early identification. Qualitative inquiry methods were used to explore and describe the perceptions and experiences of nine parents of children identified with severe to profound deafness. Parents participated in face-to-face conversations and interviews by phone and e-mail. Naturalistic inquiry methods were used to identify

Research paper thumbnail of Group Action Planning As a Support Strategy for Hispanic Families: Parent and Professional Perspectives

Mental Retardation, 2000

Abstract Focus group interviews were conducted to obtain participants' preliminary r... more Abstract Focus group interviews were conducted to obtain participants' preliminary reactions to the responsiveness of group action planning, a person-centered planning approach, as a support strategy for Hispanic families of individuals with disabilities. Focus group ...

Research paper thumbnail of Market forces and diversity: some evidence from the 14-19 curriculum

Journal of Curriculum Studies, Jul 1, 2003

Using an economic analysis of market forces in schooling, this paper investigates change and dive... more Using an economic analysis of market forces in schooling, this paper investigates change and diversity in the 14-19 curriculum of 16 schools in three local education authorities in England. Using qualitative data from interviews with several teachers in each school, it ...

Research paper thumbnail of Are Parents Mainstreamed? A Survey of Parent Interactions in the Mainstreamed Preschool

Education and Training of the Mentally Retarded, Feb 1, 1983

Research paper thumbnail of Truths Converging: Empirical Support for Intuitive Understanding

In an article about participatory action research published in 1998, one of the authors of this c... more In an article about participatory action research published in 1998, one of the authors of this commentary remarked that there was no empirical documentation of the efficacy of research in which the various stakeholders are involved throughout the proc ess of planning and conducting the study . Now, we are delighted to see that Faith Lamb-Parker et al. have gone a long way toward correcting this deficit. We should also congratulate the ACYF/Head Start Bureau for the creation of the communityuniversity partnership funding initiatives, with their accompanying requirements for researchers, practitioners, and parents to develop and carry out research in partnership. These community-university partnership funding initiatives created the sufficient and appropriately similar pool of partnerships necessary for an empirical study to occur.

Research paper thumbnail of Teachers as Friendship Facilitators: Respeto and Personalismo

Teaching Exceptional Children, 2000

Research paper thumbnail of Citizen Advocacy in Special Education Training

Education and Training of the Mentally Retarded, 1977

Research paper thumbnail of The Challenge of Providing Comprehensive Support to Families

Education and Training in Mental Retardation, 1988