Academic pediatric departments, government agencies, and children with special health care needs

Abstract

The provision of health care to children with special health care needs is fundamental to the clinical, research, and educational missions of academic pediatric departments. However, the leadership that academic pediatric departments provide for education, research, and clinical care does not necessarily extend to the management of the process by which health care is delivered to these children. This may place academic pediatric departments increasingly on the defensive. In many instances, the departments may be the only location for these children to receive care, and the departments may be forced to accept inadequate reimbursement for their care. The departments will find themselves attempting to cope with changes in which they have not been involved and do not understand, and their ability to fulfill their other missions will be seriously threatened. A coalition of state and federal government agencies in the United States has provided funding mechanisms for children’s health care through a matrix of programs, including Medicaid (Title XIX of the Social Security Act), SSI, and disproportionate share programs that include Medicare and Medicaid revenue, Childrens Health Insurance Program, and Childrens Special Health Care Services (Title V of the Social Security Act). These funding efforts are often given as block grants that require matching funds at the state level and have resulted from lobbying activity of advocacy groups in partnership with health care professionals. Efforts to improve the level of health insurance for children with special health care needs are clearly necessary because it has been shown that underinsured children with chronic illnesses are much more likely to go without needed care.1Newacheck PW McManus M Fox HB Hung YY Halfon N Access to health care for children with special health care needs.Pediatrics. 2000; 105: 760-766Crossref PubMed Scopus (265) Google Scholar The desire to ensure that every child has adequate health insurance has led to the recent SCHIP program, which has given states the ability to extend health insurance to children in families with incomes that would not qualify for Medicaid. Federal and state government programs that provide health care for children have been subject to rapidly escalating costs over the last decade. These government programs have responded to cost increases by converting Medicaid patients to managed care programs, which initially had some success in controlling health care costs in the private sector. This strategy of managed care control of health care expenditure places an emphasis on primary and preventive care and attempts to restrict access to specialists and high-end technology. The managed care approach for the Medicaid population has the advantage of eliminating the government as a direct purchaser of health care services and requiring only a monthly capitation payment to a third-party payor. The government then no longer bears the immediate risk for increased health care costs. These financial advantages to the government have resulted in the number of Medicaid recipients in managed care increasing from 20% to 50% during the last decade.2Hill I Schwalberg R Zimmerman B Tilson W. Achieving service integration for children with special health care needs: an assessment of alternative Medicaid managed care models.1999Google Scholar The typical managed care approach, which relies on primary care providers restricting access to “costly” specialists, technology, occupational therapy, physical therapy, and durable medical equipment, is particularly ill suited for children who have specific needs for these services. Intense lobbying resulted in language changes in the Balanced Budget Act of 1997, which requires states to apply for a special waiver to mandate enrollment of children with special health care needs who are recipients of Medicaid funding in a managed care program. Typically, a state will have to explain how the special needs population will be safeguarded from restricted access before the state is granted such a waiver. However, states that obtained waivers for this population before institution of the more restrictive guidelines are not subject to the restrictions. A recently released survey by the General Accounting Office raises serious questions as to how effective these safeguards have been.3A report of the Commonwealth Fund Task Force on Academic Health Centers, April 2001.in: A shared responsibility academic health centers and the provision of care to the poor and uninsured. 2000: 1-64Google Scholar Many of the states enrolling children with special health care needs in managed care plans do not inform the plans which children with special health care needs have been assigned to their plan, and they do not require the plans to perform assessments to identify the special needs population.6United States General Accounting Office Medicaid managed care states’ safeguards for children with special needs vary significantly.September 2000Google Scholar This lack of identification results in a situation in which the health plans are the sole determinants of who actually receives services and to what extent they are available. The lack of effort that managed care plans have put into identifying this population is complicated by the lack of an agreed upon functional definition for children with special health care needs. One generally accepted definition is that children with special health care needs are those who have or are at an increased risk for a chronic physical, developmental, behavioral, or emotional condition and who require health and related services of a type or amount beyond that required by children generally.5McPhearson M A new definition of children with special health care needs.Pediatrics. 1998; 102: 137-140Crossref PubMed Scopus (959) Google Scholar This definition has been estimated to include up to 20% of all children, but most government programs that provide services for this population include a far smaller number of children. By having an active dialogue with state officials, academic pediatric departments can help to decide whether those children who “actually have functional disabilities” or “are at risk for chronic illness” should be included. In many instances, program administrators are forced to choose between making a difference for children with significant and expensive needs and providing some level of resources to a larger population. Academic pediatric departments can provide ongoing input into government programs that define the population and manage the complex interplay among the physical, social, and family needs of these patients. A managed care approach for children with special health care needs presents special challenges for this population7The David and Lucille Packard Foundation. The future of children, children and managed health care. 8(2), pp. 1-160.Google Scholar and an exceptional opportunity for academic pediatric departments to form creative and successful partnerships with the government to solve these problems. The concerns that children with special health care needs and their families have with managed care can, in many instances, be resolved by close involvement of an academic pediatric center with the managed care plan. Families of children with special health care needs worry that their managed care plan will not allow access to appropriate health care providers for their child; this is readily addressed by the involvement of academic pediatric departments. Another major concern for families is the development of appropriate definitions of medical necessity to determine the level of care required for their child. The lack of pediatric expertise by a managed care plan in the determination of medical necessity often results in inappropriate application of criteria used for adult patients. The close involvement of academic pediatric departments will ensure the availability of health services outcomes measurements that are necessary to provide the quality of care and incentives that are necessary for the pediatric special needs population. Academic pediatric departments need to be closely involved with the managed care approach to this population in order to be involved with the capitation and risk adjustment that is required. The departments must be fairly reimbursed for the considerable clinical skill, administration, and care coordination that are required to provide optimal care for these children and families. The greater the involvement of academic pediatric departments in the development of managed care programs for the care of these children, the greater is the likelihood that these programs will reflect the needs of the departments and the families. The level of involvement of the academic pediatric center with programs for children with special needs varies significantly across the country. Traditionally, many state programs have contracted with academic programs to provide specialty clinics for specific populations of children with special health care needs. Often, these clinics are held at distinct times from the regular specialty clinic and may include multiple types of health care providers. The method of reimbursement may be on a per diem basis, and in some instances, funds are available for triage and care coordination outside of the clinic; however, these latter functions are often provided by a state agency. The effectiveness of these types of clinics in providing care for children with special health care needs has been somewhat threatened by the move to managed care. The General Accounting Office has recently documented that patients may no longer be identified within the managed care plan, and there may well be a financial disincentive for the managed care plan to identify and use these clinics. The cost of the clinic itself may be transferred to the managed care plan, and the managed care plan may be hesitant to refer patients to clinics because clinics are viewed as expensive. The potential advantages to all parties for close involvement of academic pediatric departments with the state government in providing care for children with special needs and their families are illustrated by the coordinated effort of consumer advocacy groups, state government, and leaders of academic pediatric departments in the state of Michigan.4Gray HB. Managed care for children with special healthcare needs: Michigan’s approach.Pediatr Ann. 1997; 26: 668-672Crossref PubMed Scopus (3) Google Scholar The precise form of the partnership between academic pediatric departments and state government depends on both partners communicating and expressing their interests. In 1998, a joint effort between the University of Michigan Hospital Health System and Henry Ford Health System, known as Kids Care, began to provide a care coordination system for children with special needs and their families. Kids Care is in the process of contracting with providers throughout the state and is currently licensed in counties that provide service to approximately 70% of the children in Michigan’s special health care needs program and plans to be in all counties by the end of 2001. It is anticipated that all of the regional pediatric centers in the state will be providers in the network by the time it is statewide. Enrollment in this program is voluntary for children and their families. Kids Care receives a monthly capitation from the state for every child enrolled. This capitation is to provide medical care and to cover the administration and care coordination costs of the program, although the state has guaranteed cost covering during the initial 5-year contract. The amount is adjusted for the severity of illness, age, and location of the child and reflects what the state would pay for medical services in the traditional fee-for-service program. When the family chooses to enroll in this program, a local care coordinator is chosen to work with the family to develop an individualized health care plan. A plan level care coordinator supervises this process and works with the family to select a principal coordinating doctor who will review the health care plan. When this plan is finalized and approved by the principal coordinating doctor, it is reviewed by Kids Care and used as the authorization template for services for the next year. This process of creating an individualized health care plan allows the family to be at the center of the child’s care plan and ensures that the providers for the child are dictated by the physician chosen by the family to make those decisions. Preliminary assessment shows that in areas that a full provider network has been developed, between 35% and 40% of patients and their families will choose to enroll in a special health plan such as Kids Care. Initial consumer satisfaction surveys show that 95% of patients and their families believe that this care coordination process significantly adds to their care. Some of the benefits to academic pediatric departments involved with this program include the ability to negotiate fee increases of 40% over Medicaid rates for physicians who take care of children with special needs enrolled in Kids Care. The leaders of the academic pediatric programs have developed increased credibility with state government leaders and policy makers. The academic departments have increased their access to the special health care needs population and are able to be more creative in the provision of care. Kids Care also provides a forum for academic pediatric programs from around the state to set guidelines for issues that relate to the care of these children with special needs. Academic pediatric departments in states such as Florida, Maryland, and the District of Columbia have also shown innovative and creative ways of establishing this leadership. Although the nature of reimbursement for these programs guarantees that there will be diversity in their operations, the broad outlines of government support for children with special needs are becoming clear. Now is the time to work on clearly defining the population, the quality of care that these children should receive, and the role that academic pediatric departments should play in their care. It will be of increasing importance for academic pediatric departments to take a lead in the resolution of these issues if they are to maintain their leadership positions in both advocacy and provision of care for children with special health care needs and their families. The challenge of vaccinating vulnerable childrenThe Journal of PediatricsVol. 139Issue 5PreviewSee related articles, p 624 and p 630 Full-Text PDF