Harriette B. Fox

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.

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.

Advancing Medical Education Training in Adolescent Health

P COMPREHENSIVE CARE to adolescents is a multifaceted undertaking, requiring not only routine medical services but also health education, risk reduction, mental health, behavioral health, and sexual health services. Yet, this vital spectrum of care is unavailable to most adolescents. Not only is there a paucity of adolescent medical specialists, but many pediatricians—the providers increasingly likely to care for adolescents—report that they lack training and confidence in diagnosing and managing adolescents’ psychosocial and reproductive problems. Although this issue has not been the subject of much research, 1 national survey of pediatricians in 1998 found that 57% cited lack of training in gynecological care and 40% reported lack of training in mental health as significant barriers to providing needed services to adolescents.1 Incenter Strategies’ recent national surveys of adolescent medicine fellowship program directors, pediatric residency program directors, and adolescent medicine faculty in pediatric residency programs show a high degree of support for new options to enhance clinical training in adolescent medicine. The response rates, ranging from 75% to 88%, underscore the salience of this issue for academicians. Currently, pediatric residency programs, like other primary care residency programs, are not structured to give in-depth attention to adolescent medicine. The required rotation for adolescent medicine is just 1 month, with that time allotment exceeded by only 5% of residency programs. During the rotation, residents receive at least some training on a wide variety of adolescent health issues. Yet, in our survey, a third or more of adolescent medicine faculty responsible for the one-month rotation report that, in terms of clinical practice and application, exposure to key adolescent medicine topics is limited. Faculty report that areas such as anticipatory guidance, health promotion, disease prevention, chronic illness, mental health and behavioral health are only somewhat covered or not covered at all. Residents generally train in a small proportion of the settings in which adolescents typically receive care, according to surveyed faculty. Moreover, time spent in each site is often limited to a few days. In the predominant clinical site where residents are trained, adolescent medicine faculty report that mental health, behavioral health, and sexual health services are not consistently available. Neither are needed specialists; in fact, a psychiatrist or obstetrician/gynecologist is regularly on staff at only 10% of these clinics. Although clinical training in adolescent medicine should be integrated throughout residency training, most residents’ exposure to adolescents is currently focused heavily on inpatient and subspecialty care in which the medical concerns of the general adolescent population are not the focus of training. Continuity clinics might be expected to provide balance by offering opportunities for wide-ranging clinical experience in adolescent medicine. Yet, pediatric residency program directors, in more than a third of programs report that adolescents comprise 10% or less of the pediatric patient population in continuity clinics. Moreover, in well over three-quarters of programs, residents rarely see the same adolescent patient more than once in continuity clinic settings. Given these findings, it seems that the time has come to consider the need for major reforms in adolescent medicine training. At least 4 reform options should be examined: 1) extending the length of the mandatory adolescent medicine rotation, 2) introducing more flexibility in residency programs to allow for formalized optional training tracks in adolescent medicine 3) creating a combined pediatrics/adolescent medicine residency, and 4) increasing the availability of one-year adolescent medicine clinical training programs after completion of categorical training in general pediatrics. Each option has distinct strengths and weaknesses. Requiring a longer adolescent medicine rotation offers the advantages of encounters with more adolescents and a broader array of problems, more time spent at community sites, and increased exposure to faculty with expertise in adolescent medicine. Extending the length of the rotation, however, would not necessarily address the need for more experience developing longitudinal therapeutic relationships with adolescents, arguably a

Ensuring Financial Access to Hearing Aids for Infants and Young Children

Many young children with permanent hearing loss do not receive hearing aids and related professional services, in part because of public and private financing limitations. In 2006 the Childrens Audiology Financing Workgroup was convened by the National Center for Hearing Assessment and Management to evaluate and make recommendations about public and private financing of hearing aids and related professional services for 0- to 3-year-old children. The workgroup recommended 4 possible strategies for ensuring that all infants and young children with hearing loss have access to appropriate hearing aids and professional services: (1) clarify that the definition of assistive technology, which is a required service under Part C of the Individuals With Disabilities Education Act (IDEA), includes not only analog hearing aids but also digital hearing aids with appropriate features as needed by young children with hearing loss; (2) clarify for both state Medicaid and Childrens Health Insurance Programs that digital hearing aids are almost always the medically necessary type of hearing aid required for infants and young children and should be covered under the Early and Periodic Screening, Diagnosis, and Treatment (EPSDT) program; (3) encourage the passage of private health insurance legislative mandates to require coverage of appropriate digital hearing aids and related professional services for infants and young children; and (4) establish hearing-aid loaner programs in every state. The costs of providing hearing aids to all 0- to 3-year old children in the United States are estimated here.

A National Study of Commercial Health Insurance and Medicaid Definitions of Medical Necessity: What Do They Mean for Children?

OBJECTIVE To analyze medical necessity standards used by state Medicaid agencies and the largest commercial insurers in the United States on the basis of criteria related to scope of health problems covered and requirements for effectiveness and cost. METHODS Information was obtained from managed care contract documents used by the 45 state Medicaid agencies enrolling children into managed care organizations and from certificates of coverage used by the largest health maintenance and preferred provider organization insurers in each state. RESULTS Commercial insurers are more likely than Medicaid agencies to articulate medical necessity standards that limit coverage to treatment for illnesses and injuries and to include stringent requirements for cost and evidence of effectiveness. CONCLUSION To reduce the discretion retained by insurers in determining medical necessity, particularly around the scope of health problems covered, much greater clarity and uniformity in medical necessity language will be required in the future.

Early assessments of SCHIP’s effect on access to care for adolescents

PURPOSE To examine implementation issues and challenges affecting access to care for adolescents during the first year of SCHIP operation in five states (California, Connecticut, Maryland, Missouri, and Utah). METHODS Information was obtained through on-site interviews with senior SCHIP program staff members, medical directors, and other key staff members from managed care organizations; key staff members from behavioral health subcontractors or the states behavioral health plans; a variety of physical and mental health providers; and families. Analysis of relevant SCHIP documents and available enrollment, capitation, and quality data was also conducted. RESULTS The five states generally have focused little attention in the start-up phase to the unique service needs of adolescents. Although primary care was readily available, concerns were raised about training and experience in serving this population and the availability of multidisciplinary practice arrangements. Access to family planning did not appear to be a problem. However, access to mental health services and dental services was seriously affected by limited provider participants. CONCLUSIONS Because adolescents constitute a sizeable proportion of the SCHIP population, states and managed care organizations need to consider ways to increase the participants of adolescent providers and to identify various financial and other incentives to address the serious shortages in mental health services and dental care.

Improving state Medicaid contracts and plan practices for children with special needs.

The rapid transition of state Medicaid beneficiaries into fully capitated managed care plans requires a special focus on children with chronic or disabling conditions, who often depend on numerous pediatric physicians and other specialty services for health care and related services. Because managed care arrangements for this population are growing in popularity nationwide, it is important that states craft managed care contracts to address the unique needs of children with complex physical, developmental, and mental health problems. Based on the research reported in this article, in-depth interviews with state Medicaid agency staff, interviews with medical directors and administrators of managed care plans serving Medicaid recipients, and input from experts in pediatrics and managed care, a set of recommendations is made for tailoring managed care contracts to meet the needs of this vulnerable group of children. Six contracting elements that should be adopted by state Medicaid agencies include (1) clarifying the specificity of pediatric benefits, (2) defining appropriate pediatric provider capacity requirements, (3) developing a medical necessity standard specific to children, (4) identifying pediatric quality-of-care measures, (5) setting appropriate pediatric capitation rates, and (6) creating incentives for high-quality pediatric care. Nine approaches that should be adopted by managed care practices interested in providing high-quality care for children with special needs also are identified. These include (1) ensuring that assigned primary care providers have appropriate training and experience, (2) offering support systems for primary care practices, (3) providing specialty consultation for primary care providers, (4) establishing arrangements for the comanagement of primary and specialty pediatric services, (5) arranging for comprehensive care coordination, (6) establishing flexible service authorization policies, (7) implementing provider profiling systems that adjust for pediatric case mix, (8) creating financial incentives for serving children with special needs, and (9) encouraging family involvement in plan operations. Implementing these changes to managed care contracting could have a major impact on the quality and comprehensiveness of health care received by children with special needs. Successful implementation, however, requires strong support from both state Medicaid agencies and the managed care plans dedicated to serving this population.

New workforce, practice, and payment reforms essential for improving access to pediatric subspecialty care within the medical home

T HE AVAILABILITY OF pediatric subspecialty care is critically important to the heal th and wel l being of infants, children, and adolescents. Moreover, timely collaboration with pediatric subspecialists is an essential element of the standard of care for children: the community-based medical home. The medical home model of care, with a generalist physician as the leader, has been shown to produce considerable economic and patient-level benefits. In this model, primary care practice teams coordinate all care for a patient, including subspecialty care. Unfortunately, lack of access to pediatric subspecialty care within the medical home has reached crisis proportions in the United States owing to several interrelated factors: an insufficient number of pediatric subspecialists, dramatically increasing demand for pediatric subspecialty care, a fragmented system of pediatric primary and specialty care, and inadequate f inancing of medical education and collaborative primary and specialty pediatric care through the medical home. In the United States, approximately 28 000 medical and surgical pediatric subspecialists serve 80 million children and youth. The ratio of board-certified pediatric subspecialists to children in each of the 31 specialties is hazardously low. Although the number of pediatric subspecialists has increased in the last decade, far too few physicians are being trained in nearly every pediatric subspecialty. For example, the American Board of Pediatrics reports that in 2007 there were only 19 first-year fellows in developmental behavioral pediatrics, 24 in adolescent medicine, and 26 in pediatric rheumatology. Compounding the pipeline problems are increasing retention difficulties, a growing retirement rate, the tendency of younger physicians to limit their hours of practice, and the overall shortage of physicians. Furthermore, as the elderly population grows, the availability of adult specialists, many of whom care for children in areas where pediatric subspecialists are unavailable, is eroding. In addition to the problem of a shrinking workforce, demand for pediatric subspecialty care has reached unprecedented levels. During the last few decades, the incidence and prevalence of certain chronic conditions, such as attention-deficit/ hyperactivity disorder, asthma, depression, and obesity, have dramatically increased. Furthermore, the survival of infants and children with complex, formerly fatal conditions has become commonplace. Advances in medical and surgical care, technology, and drugs have clearly created new benefits and stresses on our pediatric care delivery systems. Changes in families’ knowledge and preferences for referral to specialty care are resulting in higher rates of referrals to pediatric subspecialists. Also affecting higher rates of specialty referral is the lack of adequate primary care capacity, resulting in a reduced amount of time that physicians can devote to identifying and managing chronic conditions. Underlying these obvious supplyand-demand problems is the worsening fragmentation between primary and specialty pediatric care. Despite the supporting evidence, resources to enable primary care practices to provide this level of care are not generally available. Lack of recognition of the importance of the medical home as the base of care coordination from the standpoint of reimbursement along with the absence of organized and efficient systems for referral, consultation, and collaborative care at the community and regional levels result in worsening fragmentation. Fragmentation is also aggravated by the uneven geographic distribution of pediatric subspecialists, the everchanging insurance and health plan enrollment of families, and the shifting composition of plans’ provider networks. Inadequate financing of graduate medical education and the lack of financing for continuing medical education for primary care providers further compromises access to pediatric subspecialty care within the medical home. Because payment for graduate medical education is a function, in part, of the percent of inpatient days attributable to caring for Medicare patients, hospitals serving children are at a distinct disadvantage. While a separate graduate medical education program operates for children’s hospitals, it is subject to low annual appropriations. In addition, the graduate medical education program is structured to discourage subspecialty training in favor of primary care training by counting fellows in subspecialty training at lower levels than resident physicians in their initial specialty training. Moreover, no funding sources are available to support primary care providers who are interested in pursuing additional specialized training. Equally significant is inadequate third-party payment. Between one-third to one-half of all children (depending on their age) are insured by Medicaid or the State Children’s Health Insurance Program, and children with special