Merle McPherson

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.

Fetal alcohol syndrome and alcohol-related neurodevelopmental disorders

Prenatal exposure to alcohol is one of the leading preventable causes of birth defects, mental retardation, and neurodevelopmental disorders. In 1973, a cluster of birth defects resulting from prenatal alcohol exposure was recognized as a clinical entity called fetal alcohol syndrome. More recently, alcohol exposure in utero has been linked to a variety of other neurodevelopmental problems, and the terms alcohol-related neurodevelopmental disorder and alcohol-related birth defects have been proposed to identify infants so affected. This statement is an update of a previous statement by the American Academy of Pediatrics and reflects the current thinking about alcohol exposure in utero and the revised nosology.

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

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.

The 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.

Provision of educationally related services for children and adolescents with chronic diseases and disabling conditions.

Children and adolescents with chronic diseases and disabling conditions often need educationally related services. As medical home providers, physicians and other health care professionals can assist children, adolescents, and their families with the complex federal, state, and local laws, regulations, and systems associated with these services. Expanded roles for physicians and other health care professionals in individualized family service plan, individualized education plan, and Section 504 plan development and implementation are recommended. Recent updates to the Individuals With Disabilities Education Act will also affect these services. Funding for these services by private and nonprivate sources also continue to affect the availability of these educationally related services. The complex range of federal, state, and local laws, regulations, and systems for special education and related services for children and adolescents in public schools is beyond the scope of this statement. Readers are referred to the American Academy of Pediatrics policy statement “The Pediatricians Role in Development and Implementation of an Individual Education Plan (IEP) and/or an Individual Family Service Plan (IFSP)” for additional background materials. The focus of this statement is the role that health care professionals have in determining and managing educationally related services in the school setting. This policy statement is a revision of a previous statement, “Provision of Educationally Related Services for Children and Adolescents With Chronic Diseases and Disabling Conditions,” published in February 2000 by the Committee on Children With Disabilities (http://aappolicy.aappublications.org/cgi/content/full/pediatrics;105/2/448).

Auditory integration training and facilitated communication for autism

This statement reviews the basis for two new therapies for autism—auditory integration training and facilitative communication. Both therapies seek to improve communication skills. Currently available information does not support the claims of proponents that these treatments are efficacious. Their use does not appear warranted at this time, except within research protocols.

Strengthening partnerships between state programs for children with special health care needs and managed care organizations.

The roles and responsibilities of state Title V Programs for Children with Special Health Care Needs (CSHCN)are changing with the rapid expansion of managed care. The authors surveyed Title V CSHCN programs to learn about critical issues and examples of coliaboration with managed care organizations in the following areas: (1)defining and identifying children with special health care needs, (2)enrollment assistance and family participation, (3)pediatric provider and service requirements,(4)education and training,(5)quality of of care, and (6)pediatric risk-adjusted capitation mechanisms. This article also includes recommendations developed by the federal Maternal and Child Health Bureauswork Group on Managed Care.

Community Programs for Children with Rheumatic Diseases

There is an evident need for both qualitative and quantitative expansion of services to children with rheumatic or connective tissue diseases. These are necessary for diagnosis, amelioration, rehabilitation and reconstruction at the physical level. They are equally important for the development of appropriate and gratifying career and other biopsychosocial goals and for the achievement of them. Two model programs have been described. Such programs should be designed to accommodate local and regional conditions within the broad context of comprehensive care. Numerous governmental and private agencies are available to assist in this process, but it is still dynamic and evolutionary.