Nora Wells

Identifying children with special health care needs: Development and evaluation of a short screening instrument

BACKGROUND Public agencies, health care plans, providers, and consumer organizations share the need to monitor the health care needs and quality of care for children with special health care needs (CSHCN). Doing so requires a definition of CSHCN and a precise methodology for operationalizing that definition. RESEARCH OBJECTIVES The purpose of this study was to develop an efficient and flexible consequence-based screening instrument that identifies CSHCN across populations with rates commensurate with other studies of CSHCN. METHODS The CSHCN Screener was developed using the federal Maternal and Child Health Bureau (MCHB) definition of CSHCN and building on the conceptual and empirical properties of the Questionnaire for Identifying Children with Chronic Conditions (QuICCC) and other consequence-based models for identifying CSHCN. The CSHCN Screener was administered to 3 samples: a national sample of households with children (n = 17985), children enrolled in Medicaid managed care health plans (n = 3894), and children receiving Supplemental Security Income (SSI) benefits in Washington State (n = 1550). The efficiency, impact of further item reduction, and flexibility of administration mode were evaluated. Rates and expected variation in rates across demographic groups of children positively identified by one or more of the 5 CSHCN Screener item sequences in each sample were examined and multinomial logistic regression analysis were conducted to evaluate the effect of child characteristics in predicting positive identification. RESULTS The CSHCN Screener took approximately 1 minute per child to administer by telephone and 2.1 minutes per household. During self-administration, over 98% of respondents completed each of the 5 CSHCN Screener item sequences, and respondents accurately followed each of the item skip patterns 94% of the time. Mailed surveys and telephone-administered surveys led to similar rates of positive identification in the same sample. Two Screener items would have identified 80%-90% of children positively identified as CSHCN across the study samples, although using only 2 items eliminates some children with more complex health needs. Rates of children identified by the CSHCN Screener varied according to age, sex, race/ethnicity, health status, and utilization of health services. CONCLUSIONS Results of this study indicate that the CSHCN Screener requires minimal time to administer, is acceptable for use as both an interview-based and self-administered survey, and that rates of children positively identified by the CSHCN Screener vary according to child demographic, health, and health care-need characteristics. The CSHCN Screener provides a comprehensive yet parsimonious and flexible method for identifying CSHCN, making it more feasible than existing measures for standardized use across public agencies, health care plans, and other users.

Access to Specialty Medical Care for Children With Mental Retardation, Autism, and Other Special Health Care Needs

Access to specialty medical care among children with mental retardation, autism, or other types of special health care needs was examined. Results from a national survey indicate that over a third of the children with autism, over a fifth with mental retardation, and over a fifth with other types of special health care needs had problems obtaining needed care from specialty doctors in the preceding year. The most common problems included getting referrals and finding providers with appropriate training. Children with unstable health conditions, autism, or those whose parent was in poor health were at greater risk for problems. Primary Medicaid coverage and public secondary health coverage were associated with fewer access problems. Implications for health services for children with special health care needs are discussed.

The Consequences of Caring Effects of Mothering a Child with Special Needs

This article broadens our knowledge about family caregiving across the life course by examining caregiving and employment effects experienced by women with children with special needs, using data from a survey conducted in 1998-1999. Almost one fifth of the mothers provide at least 20 hours a week of home health care to these children. More than half of the mothers in the labor force report an employment effect in the form of reducing their hours, and more than half of the mothers at home full-time report ceasing paid employment due to their children’s needs. Experiencing these effects was most strongly associated with the child’s health characteristics. The caregiving provided by mothers of children with special needs occurs at a formative stage of their lives and may be intense and of long duration. These mothers’ experiences should be included in the current research and theories about family caregiving across the life course.

Patient- and Family-Centered Care Coordination: A Framework for Integrating Care for Children and Youth Across Multiple Systems

Understanding a care coordination framework, its functions, and its effects on children and families is critical for patients and families themselves, as well as for pediatricians, pediatric medical subspecialists/surgical specialists, and anyone providing services to children and families. Care coordination is an essential element of a transformed American health care delivery system that emphasizes optimal quality and cost outcomes, addresses family-centered care, and calls for partnership across various settings and communities. High-quality, cost-effective health care requires that the delivery system include elements for the provision of services supporting the coordination of care across settings and professionals. This requirement of supporting coordination of care is generally true for health systems providing care for all children and youth but especially for those with special health care needs. At the foundation of an efficient and effective system of care delivery is the patient-/family-centered medical home. From its inception, the medical home has had care coordination as a core element. In general, optimal outcomes for children and youth, especially those with special health care needs, require interfacing among multiple care systems and individuals, including the following: medical, social, and behavioral professionals; the educational system; payers; medical equipment providers; home care agencies; advocacy groups; needed supportive therapies/services; and families. Coordination of care across settings permits an integration of services that is centered on the comprehensive needs of the patient and family, leading to decreased health care costs, reduction in fragmented care, and improvement in the patient/family experience of care.

Navigating Systems of Care: Results From a National Survey of Families of Children With Special Health Care Needs

In this article we focus on the contemporary experiences of families of children with special health care needs (CSHCN) and illustrates the extent to which they are embedded in multiple systems of care that include health insurance plans, public supports, community-based programs, and a variety of specialized providers. Data are presented from the Family Partners Project, a national survey of 2,220 parents of CSHCN conducted from 1998 to 1999 in 20 states. We address 4 critical issues, including the complexity of current service delivery systems, the problems experienced in obtaining needed specialty services, the coordination of services and the role of case managers, and parental ratings of health plans.

Inequities in health care needs for children with medical complexity.

Children with special health care needs are believed to be susceptible to inequities in health and health care access. Within the group with special needs, there is a smaller group of children with medical complexity: children who require medical services beyond what is typically required by children with special health care needs. We describe health care inequities for the children with medical complexity compared to children with special health care needs but without medical complexity, based on a secondary analysis of data from the 2005-06 and 2009-10 National Survey of Children with Special Health Care Needs. The survey examines the prevalence, health care service use, and needs of children and youth with special care needs, as reported by their families. The inequities we examined were those based on race/ethnicity, primary language in the household, insurance type, and poverty status. We found that children with medical complexity were twice as likely to have at least one unmet need, compared to children without medical complexity. Among the children with medical complexity, unmet need was not associated with primary language, income level, or having Medicaid. We conclude that medical complexity itself can be a primary determinant of unmet needs.

Optimizing Health and Health Care Systems for Children with Special Health Care Needs Using the Life Course Perspective

To date, life course research in maternal and child health has largely focused on elucidating fetal and early life influences on adult health and less on promoting the health of children with special health care needs (CSHCN). Consideration of life course theory (LCT) for CSHCN is especially important given their increasing prevalence and comorbidity, their disproportionate vulnerability to weaknesses or instability in the health care system, and the growing evidence linking child and adult health and quality of life. In this commentary we seek to advance the consideration of LCT for CSHCN. We (1) briefly summarize key issues and the importance of a life course approach for CSHCN; (2) present illustrative findings from population-based cross-sectional data that serve to generate hypotheses that can be more rigorously examined when population-based longitudinal data become available; and (3) discuss the application of life course principles as a driving force in the continued implementation and improvement of integrated systems of care for CSHCN.

A Narrative Review of Patient and Family Engagement: The "Foundation" of the Medical "Home".

Background:Patient and family engagement (PFE) is vital to the spirit of the medical home. This article reflects the efforts of an expert consensus panel, the Patient and Family Engagement Workgroup, as part of the Society of General Internal Medicine’s 2013 Research Conference. Objective:To review extant literature on PFE in pediatric and adult medicine and quality improvement, highlight emerging best practices and models, suggest questions for future research, and provide references to tools and resources to facilitate implementation of PFE strategies. Methods:We conducted a narrative review of relevant articles published from 2000 to 2015. Additional information was retrieved from personal contact with experts and recommended sources from workgroup members. Results:Despite the theoretical importance of PFE and policy recommendations that PFE occurs at all levels across the health care system, evidence of effectiveness is limited, particularly for quality improvement. There is some evidence that PFE is effective, mostly related to engagement in the care of individual patients, but the evidence is mixed and few studies have assessed the effect of PFE on health outcomes. Measurement issues and the lack of a single comprehensive conceptual model pose challenges to progress in this field. Recommendations for future research and a list of practical tools and resources to facilitate PFE are provided. Conclusions:Although PFE appeals to patients, families, providers, and policy-makers, research is needed to assess outcomes beyond satisfaction, address implementation barriers, and support engagement in practice redesign and quality improvement. Partnering with patients and families has great potential to support high-quality health care and optimize outcomes.

Policy statement - Supplemental security income (SSI) for children and youth with disabilities

The Supplemental Security Income (SSI) program remains an important source of financial support for low-income families of children with special health care needs and disabling conditions. In most states, SSI eligibility also qualifies children for the state Medicaid program, providing access to health care services. The Social Security Administration (SSA), which administers the SSI program, considers a child disabled under SSI if there is a medically determinable physical or mental impairment or combination of impairments that results in marked and severe functional limitations. The impairment(s) must be expected to result in death or have lasted or be expected to last for a continuous period of at least 12 months. The income and assets of families of children with disabilities are also considered when determining financial eligibility. When an individual with a disability becomes an adult at 18 years of age, the SSA considers only the individuals income and assets. The SSA considers an adult to be disabled if there is a medically determinable impairment (or combination of impairments) that prevents substantial gainful activity for at least 12 continuous months. SSI benefits are important for youth with chronic conditions who are transitioning to adulthood. The purpose of this statement is to provide updated information about the SSI medical and financial eligibility criteria and the disability-determination process. This statement also discusses how pediatricians can help children and youth when they apply for SSI benefits.

Families Are Key in Improving Quality

From Family Voices, Inc, Lexington, MA (Ms Wells); and National Partnership for Women and Families Washington, DC (Ms Partridge) The opinions expressed herein are those of the authors and do not necessarily represent the views of the US Department of Health and Human Services, the Agency for Healthcare Research and Quality, or the Centers for Medicare & Medicaid Services. The authors have no conflicts of interest to disclose. Publication of this article was supported by the US Department of Health and Human Services or the Agency for Healthcare Research and Quality. Address correspondence to NoraWells, MSEd, Family Voices, Inc, c/o ERG, 110, Hartwell Avenue, Lexington,Massachusetts 02421 (e-mail: nwells@familyvoices.org).