Margaret A. McManus

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.

Access to health care for children with special health care needs.

Objective. To assess the role health insurance plays in influencing access to care and use of services by children with special health care needs. Methods. We analyzed data on 57 553 children younger than 18 years old included in the 1994–1995 National Health Interview Survey on Disability. The survey obtained information on special health care needs, insurance status, and access to and use of health services. Bivariate and multivariate analyses were used to assess the association of insurance with several measures of access and utilization, including usual source of care, site of usual care, missed or delayed care, and use of ambulatory physician services. Results. Using the federal Maternal and Child Health Bureau definition of children with special health care needs, we estimate that 18% of US children under 18 years old had an existing special health care need in 1994–1995. An estimated 89% of these children had some form of health insurance coverage, most often private health insurance. Insured children were more likely than uninsured children to have a usual source of care (96.9% vs 79.2%). Among those with a usual source of care, insured children were more likely than uninsured children to have an identified regular clinician (87.6% vs 80.7%). Insured children were less likely to report unmet health needs, including medical care (2.2% vs 10.5%), dental care (6.1% vs 23.9%), prescriptions, and/or eyeglasses (3.1% vs 12.3%), and mental health care (.9% vs 3.4%). Insured children were also more likely to have a physician contact in the past year (89.3% vs 73.6%) and have more physician contacts on an annual basis (8.5 vs 4.1 contacts). Unexpectedly, no differences were found between insured and uninsured children in availability of after hours medical care (evenings and weekends) or satisfaction with care. We also found some modest differences in access between publicly and privately insured children. Privately insured children were more likely to have a usual source of care (97.6% vs 95.3%) and a regular clinician (91.0% vs 81.1%). Privately insured children were also less likely to report dissatisfaction with care at their usual site of care (14.9% vs 21.0%) and have access to care on evenings and weekends (6.8% vs 13.4%). No substantial differences were found between privately and publicly insured children in prevalence of unmet health needs or delays in obtaining care due to cost. Conclusions. This study illustrates the importance of health insurance for children with special health care needs. Continued efforts are needed to ensure that all children with special health care needs have insurance and that remaining access and utilization barriers for currently insured children with special health care needs are also addressed.

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

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.

Measuring the “Triple Aim” in Transition Care: A Systematic Review

BACKGROUND AND OBJECTIVES: Without adequate support, adolescents transitioning from the pediatric to the adult health care system are at increased risk for poor health outcomes. Numerous interventions attempt to improve this transition, yet few comprehensively evaluate efficacy. To advance evaluation methods and ultimately the quality of transition services, it is necessary to understand the current state of health care transition measurement. This study examines and categorizes transition measures by using the “Triple Aim” framework of experience of care, population health, and cost of care. METHODS: Ovid Medline and the Cumulative Index to Nursing and Allied Health Literature were searched for articles published between 1995 and 2013. Two reviewers independently screened studies and included those that evaluated the impact of a health care transition intervention. Measures were subsequently classified according to population health, experience of care, and costs of care. RESULTS: Of the 2282 studies initially identified, 33 met inclusion criteria. Population health measures were used in 27 studies, with disease-specific measures collected most frequently. Fifteen studies measured cost, most often service utilization. Eight studies measured experience of care, with satisfaction assessed most commonly. Only 3 studies examined all 3 domains of the “Triple Aim.” Transition interventions described in the gray literature were not reviewed. CONCLUSIONS: Transition programs are inconsistently evaluated in terms of their impact on population health, patient experience, and cost. To demonstrate improvement in the transition from pediatric to adult health care, a more robust and consistent set of measures is needed.

Private health insurance for adolescents: is it adequate?

PURPOSE To examine the nature and extent of private insurance coverage available for health services needed by six hypothetical adolescents with physical and mental health conditions. METHODS Health insurance information was obtained from the most commonly sold product of the largest health maintenance organization (HMO) and preferred provider organization (PPO) in each state and the District of Columbia. Contract documents were collected in 1999 and were in effect at the end of 1998. Our response rate was 97% and included 49 HMOs and 49 PPOs. The extent of coverage was analyzed according to benefit availability, structure, limits, and protections, as well as condition and treatment restrictions. RESULTS The two hypothetical adolescents with asthma and depression had coverage for their recommended health services in most of the 98 plans. However, the four hypothetical adolescents whose conditions included pregnancy and sexually transmitted disease, anorexia nervosa, injury, and substance abuse and bipolar disorder would rarely have access to coverage for all of their recommended services. Ancillary and behavioral health therapies were least likely to be available in the amounts considered necessary by medical experts. All of the hypothetical adolescents would be more likely to obtain coverage for certain services in HMO than in PPO plans. CONCLUSIONS Despite the obvious value of the private health insurance system, insurance benefits are not always matched to the needs of the adolescent. Employers and policymakers may want to consider financial or other incentives to create more uniformity in employer-based coverage, particularly for preventive care, prescription drugs, and reproductive services; greater availability of mental health and substance abuse benefits; and new mechanisms to support access to confidential care.

A Primary Care Quality Improvement Approach to Health Care Transition

In the US, 18% of all youth have a special health care need. These needs represent 80% of all health care expenditures for children.1,2 Most of these youth will survive into adulthood as productive community members and will receive their health care in an adult model of care. To reach that goal, transition should be thought of as an active process over time that addresses many aspects of the youth’s life, including medical, psychosocial, educational, and vocational needs, as they prepare to move from childto adult-centered health care.3 Transfer should be thought of as the act of moving from one provider to another or from one location to another.4, 5 Thus, the transition process is twofold for

Health care expenditure patterns for adolescents

Health care expenditure patterns are described using a sample of 2,767 adolescents aged 10 to 18 years from the National Medical Care Utilization and Expenditure Survey. Average total per capita health care expenditures were

Advancing Medical Education Training in Adolescent Health

525. Average out-of-pocket expenses were

Ensuring Financial Access to Hearing Aids for Infants and Young Children

151 in 1988 dollars. The burden of out-of-pocket expenses was distributed unevenly among the families of adolescents. The 10% of adolescents with the highest expenses accounted for 65% of all out-of-pocket expenses. The presence of health insurance coverage greatly reduced the risk of incurring burdensome out-of-pocket expenses. Health policy interventions to improve health insurance coverage of adolescents are discussed.