Bonnie Strickland

A New Definition of Children With Special Health Care Needs

* Abbreviations: MCH = : Maternal and Child Health (program) • CSHCN = : Children With Special Health Care Needs (program) • DSCSHCN = : (Maternal and Child Health Bureaus) Division of Services for Children With Special Health Care Needs. Developing community systems of services for children with special health care needs represents a significant challenge for pediatricians, families, managed care organizations, and public and private agencies providing services to this population. At the state level, Maternal and Child Health (MCH) and Children With Special Health Care Needs (CSHCN) programs are vested with the responsibility for planning and developing systems of care for all children with special health care needs. Historically, these programs have been supported through Title V of the Social Security Act, with state-matching funds, to provide health services to selected groups of children with special needs, typically those with complex physical conditions. However, during the last half-century, service systems have become increasingly complex as a result of health, education, and social policy changes, as well as changes in the epidemiology of child health, including increases in the number and proportion of children with chronic conditions and disabilities and changes in their case-mix.1-4 These changes have resulted in gaps in some service areas and duplication in other areas, as well as fragmentation in the way service systems are organized.5 Recognizing these difficulties, health policy leaders at the state and federal levels, with broad input from public and private agencies, providers, and families, effected legislative changes in the federal Omnibus Budget Reconciliation Act of 1989, which expanded the mission of CSHCN programs to facilitate the development of community-based systems of services for children with special health care needs and their families. Since then, the explosive growth of managed care has presented new challenges and opportunities as well as a heightened urgency for the development of systems of care that integrate health and related services for this population.6 7 Developing systems to serve children with special health care needs requires a clear definition of the population to … Address correspondence and reprint requests to: Merle McPherson, MD, Maternal and Child Health Bureau, Room 18A27, Parklawn Bldg, 5600 Fishers Ln, Rockville, MD 20857.

An Epidemiologic Profile of Children With Special Health Care Needs

Objective. To present an epidemiologic profile of children with special health care needs using a new definition of the population developed by the federal Maternal and Child Health Bureau. Methods. We operationalized the new definition using the recently released 1994 National Health Interview Survey on Disability. Estimates are based on 30 032 completed interviews for children <18 years old. The overall response rate was 87%. Results. Eighteen percent of US children <18 years old in 1994, or 12.6 million children nationally, had a chronic physical, developmental, behavioral, or emotional condition and required health and related services of a type or amount beyond that required by children generally. This estimate includes children with existing special health care needs but excludes the at-risk population. Prevalence was higher for older children, boys, African-Americans, and children from low-income and single-parent households. Children with existing special health care needs had three times as many bed days and school absence days as other children. An estimated 11% of children with existing special health care needs were uninsured, 6% were without a usual source of health care, 18% were reported as dissatisfied with one or more aspects of care received at their usual source of care, and 13% had one or more unmet health needs in the past year. Conclusions. A substantial minority of US children were identified as having an existing special health care need using national survey data. Children with existing special health care needs are disproportionately poor and socially disadvantaged. Moreover, many of these children face significant barriers to health care.

A National Profile of the Health Care Experiences and Family Impact of Autism Spectrum Disorder Among Children in the United States, 2005–2006

OBJECTIVES. We sought to examine the health care experiences of children with autism spectrum disorder and the impact of autism spectrum disorder on the family and to assess whether having a medical home is associated with less family impact. METHODS. We used the 2005–2006 National Survey of Children With Special Health Care Needs to compare 2088 children with special health care needs, aged 3 to 17 years, reported by their parents to have autism spectrum disorder, with children with special health care needs with “other emotional, developmental, or behavioral problems” (excluding autism spectrum disorder; n = 9534) and 26751 other children with special health care needs. We used weighted logistic regression to examine unmet needs for specific health care and support services, delayed care, no usual care source or personal physician, difficulty receiving referrals, and financial, employment, or time problems because of childs care. RESULTS. Nationally, an estimated 535000 children have special health care needs and autism spectrum disorder, a prevalence of 86 per 10000 children aged 3 to 17 years. Among children with special health care needs, 5.6% have autism spectrum disorder. Compared with other children with special health care needs without emotional, developmental, or behavioral problems, children with special health care needs with autism spectrum disorder were more likely to have unmet needs for specific health care services, family support services, delayed or foregone care, difficulty receiving referrals, and care that is not family centered. Children with special health care needs with autism spectrum disorder were more likely to live in families that report financial problems, need additional income for the childs medical care, reduce or stop work because of the childs condition, spend ≥10 hours per week providing or coordinating care, and paid more than

Transition planning for youth with special health care needs: results from the National Survey of Children with Special Health Care Needs.

1000 in the previous year for the childs care. The financial impacts of autism spectrum disorder were significantly more burdensome when children with special health care needs did not have a medical home. CONCLUSIONS. Children with special health care needs with autism spectrum disorder are significantly more likely to have problems regarding access to care and unmet needs, and their families have greater financial, employment, and time burdens compared with other children with special health care needs. Receipt of primary care in a medical home may reduce these burdens.

The Medical Home: Health Care Access and Impact for Children and Youth in the United States

Objective. To describe the proportion of youth with special health care needs (YSHCN) who are receiving services for medical transitions and to describe which sociodemographic and health care-related factors are associated with receiving transition services. Methods. We analyzed responses to questions about medical transitions from the 2001 National Survey of Children With Special Health Care Needs (NS-CSHCN). Parents or guardians of youth aged 13 to 17 years who screened positive for the survey were asked (1) whether they had discussed with health care providers how their childs health care needs might change in adulthood, (2) if they had a plan to address these changing needs, and (3) if their childs health care providers had discussed having their child eventually see a doctor who treats adults. Bivariate and multivariate associations were estimated to identify sociodemographic and health care factors related to receiving medical-transition services. Results. Overall, 50% of respondents had discussed their childs changing health care needs with their physicians, although significantly fewer Hispanic youth compared with other youth reported these discussions. Youth who met criteria for a medical home were more likely to have discussed changing needs and to have a plan addressing these needs. Of those who had discussed changing needs, 59% had a plan to address these needs and ∼42% had reported discussing shifting care to adult-oriented providers. Younger teens and non-Hispanic black children were less likely to have discussed changing providers. Fifteen percent of YSHCN met the Maternal and Child Health Bureaus core outcome for medical transitions. A multivariate logistic-regression model found that older age and having a medical home were significantly associated with increased odds of meeting the outcome measure. Conclusion. The proportion of YSHCN meeting the medical-transition outcome measure is quite low, particularly for youth from ethnic minorities. Higher rates are seen for older teens and those receiving care within a medical home. Significant efforts will be required to meet the proposed goal of all YSHCN receiving the services necessary to transition to adult health care.

Planning for Health Care Transitions: Results From the 2005–2006 National Survey of Children With Special Health Care Needs

OBJECTIVE: The medical home concept encompasses the elements of pediatric care considered essential for all children. We describe here the characteristics of children with medical homes and the relationship between presence of a medical home and selected health care outcomes by using new data from the 2007 National Survey of Childrens Health (NSCH). METHODS: We used a medical home measure comprising 5 components: having a usual source of care; having a personal physician or nurse; receiving all needed referrals for specialty care; receiving help as needed in coordinating health and health-related care; and receiving family-centered care. A total of 83 448 children aged 1 to 17 years had valid data for all applicable medical home components. The NSCH is a random-digit-dial population-based telephone survey. RESULTS: In 2007, 56.9% of US children aged 1 to 17 years received care in medical homes. Younger children were more likely to have a medical home than their older counterparts. Substantial racial/ethnic, socioeconomic, and health-related disparities were present. Children who received care in medical homes were less likely to have unmet medical and dental needs and were more likely to have annual preventive medical visits. CONCLUSIONS: Approximately half of the children in the United States have access to all components of a pediatric medical home. Because the medical home is increasingly promoted as the standard for provision of high-quality comprehensive health care, these findings reinforce the need to continue and expand federal, state, and community efforts to ensure that all children have access to this model of care.

Current Status of Transition Preparation Among Youth With Special Needs in the United States

OBJECTIVES. Many youth with special health care needs have difficulties transferring to adult medical care. To address this, the Maternal and Child Health Bureau has made receipt of transition services a core performance outcome for community-based systems of care for youth with special health care needs. In this article we describe the results for the transition core outcome from the 2005–2006 National Survey of Children With Special Health Care Needs. We also describe changes in the measurement strategy for this outcome since the first National Survey of Children With Special Health Care Needs in 2001. METHODS. In the nationally representative, cross-sectional 2005–2006 National Survey of Children With Special Health Care Needs, parent or guardian respondents of 18198 youth with special health care needs (aged 12–17) were asked if they have had discussions with their childs health care providers about (1) future adult providers, (2) future adult health care needs, (3) changes in health insurance, and (4) encouraging their child to take responsibility for his or her care. All 4 components had to be met for the youth to meet the overall transition core outcome. Those who had not had transition discussions reported if such discussions would have been helpful. RESULTS. Overall, 41% of youth with special health care needs met the core performance outcome for transition. Forty-two percent had discussed shifting care to an adult provider, 62% discussed their childs adult health care needs, and 34% discussed upcoming changes in health insurance. Most (78%) respondents said that providers usually or always encourage their child to take responsibility for his or her health. Non-Hispanic black or Hispanic race/ethnicity, lower income level, not speaking English, and not having a medical home reduced the odds of meeting the transition core outcome. CONCLUSIONS. Current performance on the transition core outcome leaves much room for improvement. Many parents feel that having transition-related discussions with their health care providers would be helpful. Future clinical and policy-level research should be directed at identifying barriers to, and recommending content for, health transition discussions.

The National Survey of Children with Special Health Care Needs

OBJECTIVE: To examine current US performance on transition from pediatric to adult health care and discuss strategies for improvement. METHODS: The 2009–2010 National Survey of Children with Special Health Care Needs is a nationally representative sample with 17 114 parent respondents who have youth with special health care needs (YSHCN) ages 12 and 18. They are asked about transition to an adult provider, changing health care needs, increasing responsibility for health care needs, and maintaining insurance coverage. We analyzed the association of selected characteristics with successful transition preparation. RESULTS: Overall, 40% of YSHCN meet the national transition core outcome. Several factors are associated with transition preparation, including female gender; younger age; white race; non-Hispanic ethnicity; income ≥400% of poverty; little or no impact of condition on activities; having a condition other than an emotional, behavioral, or developmental condition; having a medical home; and being privately insured. CONCLUSIONS: Most YSHCN are not receiving needed transition preparation. Although most providers are encouraging YSHCN to assume responsibility for their own health, far fewer are discussing transfer to an adult provider and insurance continuity. Although changes in sample design limit trend analysis, there have been no discernible improvements since this transition outcome was measured in the 2005–2006 National Survey of Children with Special Health Care Needs. The 2011 release of the American Academy of Pediatrics/American Academy of Family Physicians/American College of Physicians clinical recommendations on transition, new transition tools, and the spread of medical home should stimulate future improvements in transition performance.

Access to the Medical Home: New Findings From the 2005-2006 National Survey of Children With Special Health Care Needs

CONTEXT The federal and state-level Children with Special Health Care Needs (CSHCN) programs are vested with the responsibility for planning and developing systems of care for children with special health care needs. To support achievement of this goal, the federal Maternal and Child Health Bureau (MCHB), in partnership with the National Center for Health Statistics (NCHS), has developed a new survey that will provide uniform national and state data on the prevalence and impact of special health care needs among children. PURPOSE The National Survey of CSHCN is designed to produce reliable state- and national-level estimates of the prevalence of special health care needs using MCHBs definition of CSHCN. It will also provide baseline estimates for federal and state Title V Maternal and Child Health performance measures, for Healthy People 2010 national prevention objectives, and for each states Title V needs assessment. In addition, it will provide a resource for researchers, advocacy groups, and other interested parties. It is anticipated that this survey will be repeated periodically, thereby making trend analysis possible. METHODS This survey is being conducted using the State and Local Area Integrated Telephone Survey mechanism, which shares the random-digit-dial sampling frame of the National Immunization Survey (sponsored by the National Immunization Program and NCHS). Using the CSHCN Screener, developed under the auspices of the Foundation for Accountability, 750 children with special health care needs will be identified and selected from each state and from the District of Columbia. Parents or guardians of these children then complete a comprehensive battery of questions on demographics, health and functional status, health insurance coverage, adequacy of health insurance coverage, public program participation, access to care, utilization of health care services, care coordination, satisfaction with care, and the impact of the special need on the family. Data collection began in October 2000 and will continue through March 2002. Summary reports and electronic data files will be available to the public within 6 to 12 months following completion of data collection. CONCLUSIONS The National Survey of CSHCN will offer a unique data source for individuals and organizations interested in understanding and improving service delivery for CSHCN. It is an accomplishment that reflects the contributions of state and federal Title V programs, family organizations, provider organizations, health services researchers, and the broader maternal and child health community.

A National and State Profile of Leading Health Problems and Health Care Quality for US Children: Key Insurance Disparities and Across-State Variations

OBJECTIVE. This article reports new findings from the 2005–2006 National Survey of Children with Special Health Care Needs (NS-CSHCN) regarding parental perceptions of the extent to which children with special health care needs (CSHCN) have access to a medical home. METHODS. Five criteria were analyzed to describe the extent to which CSHCN receive care characteristic of the medical home concept. Data on 40840 children included in the NS-CSHCN were used to assess the presence of a medical home, as indicated by achieving each of the 5 criteria. RESULTS. Results of the survey indicate that (1) approximately one half of CSHCN receive care that meets all 5 criteria established for a medical home; (2) access to a medical home is affected significantly by race/ethnicity, income, health insurance status, and severity of the childs condition; (3) parents of children who do have a medical home report significantly less delayed or forgone care and significantly fewer unmet needs for health care and family support services; and (4) limited improvements have occurred since success rates were first measured by using the 2001 NS-CSHCN. CONCLUSIONS. The findings suggest that, although some components of the medical home concept have been achieved for most CSHCN, care synonymous with the principles underlying the medical home is not yet in place for a significant number of CSHCN and their families.