Journal Issue: Children with Disabilities Volume 22 Number 1 Spring 2012
Assessing the Capacity of Current Delivery Systems
Any assessment of the delivery mechanisms for new technologies available for children with disabilities must begin with an examination of the capacity of the pediatric community to provide high-quality care for children with chronic conditions. In this respect, there is substantial reason for concern. Without important reforms, the current system of child health care in the United States will prove increasingly incapable of ensuring the dissemination and appropriate use of innovative technologies for children with serious disabling conditions.
Pediatric Capability for Comprehensive Care
Over the past several decades, the threat of serious, acute infection in young children has fallen dramatically, largely in response to the widespread use of a series of new immunizations. Even as the incidence of serious acute disease has decreased, evidence suggests that the prevalence of serious chronic conditions has steadily risen. This historic shift in the epidemiology of childhood, with chronic conditions accounting for a growing portion of childhood morbidity and mortality, has outpaced current child health care systems, which were developed in the 1950s and 1960s and designed primarily to address the risk of acute, infectious diseases. Changing childhood epidemiology coupled with an archaic system of delivery has created a troubling mismatch between child health care delivery structures and emerging patterns of need. This mismatch is posing several complex challenges to the provision of care to disabled children, particularly in the development of highly coordinated and integrated systems of care.32
In pediatrics, the concept of the "medical home" is driving efforts to develop integrated systems of care. Although the parameters of the ideal medical home for children have been subject to some variation,33 it is generally considered a locus of care that ensures "accessible, continuous, comprehensive, family-centered, coordinated, compassionate and culturally effective care."34 Despite numerous pronouncements regarding the importance of the medical home in child health care, however, several studies document the great difficulty of actually implementing such integrated care for large populations of children.35 Moreover, it appears that children who require complex care coordination or assistive technologies may be particularly sensitive to the lack of a high-quality medical home.36
The obstacles inherent in implementing highly coordinated care for children with complex medical needs are particularly apparent in the troubled relationship between our current health care and education systems. Since the early 1970s, federal law has required that school systems provide children with disabilities with educational and related supportive services that permit them to function as independently as possible. This requirement was extended to infants and toddlers through a reliance on early intervention programs by a law (Public Law 99-457) enacted in 1986 and later expansions in the Individuals with Disabilities Education Act (IDEA) of 1990. These expansions, clearly recognized by the pediatric community,37 supported services such as mobility devices; occupational, speech, and physical therapy; and other medical requirements. (See the article by Laudan Aron and Pamela Loprest in this volume.)38
The prescribed role of primary care physicians in facilitating and coordinating these services has eluded a clear consensus. IDEA describes the physician's responsibility in terms of clinical diagnosis, evaluation, and consultation. The American Academy of Pediatrics criticized this delineation of responsibility, however, because it failed to recognize the physician's role in the management, supervision, and planning of services for these children, basically denying a central role for the physician in the medical home.39 Regardless of the specific responsibilities of the primary care physician, however, a highly collaborative team is clearly required to coordinate care effectively across the various domains in which the child functions, including the home, the school, and the larger society.
The public education system can play an important role in facilitating access to assistive technology. IDEA specifies that children should be provided with the assistive technologies they need to reach the goals identified by an individualized education plan or individualized family services plan. In addition to educational programs, schools can facilitate the engagement of other crucial services, including occcupational, physical, and speech therapy. Often, these service providers are highly knowledgeable in the detailed use of relevant technologies as well as the administrative mechanisms required to facilitate access to them.
Considerable change has occurred in the educational and reimbursement policies supporting the involvement of school-based and nonphysician providers in care teams for children with assistive technology needs, such as wheelchairs, communication devices, and corrective glasses. But so far there has been very little insight into how these changes are affecting the nature or quality of services provided by schools. Moreover, the growing financial pressure on both the child health care and educational systems could undermine local capacities to provide highly coordinated, high-quality services for disabled children.
The Promise and Limits of the Medical Home
No comprehensive assessment has been conducted of why the medical home has been so difficult for the child health care system to implement, but several important concerns may play a role. The availability and affordability of insurance coverage is strongly associated with access to services for children with complex health problems, affecting both out-of-pocket family expenditures and the use of those services.40 The role reimbursement policies play in shaping physician practice, particularly physicians' willingness to care for children with special health care needs, is less clear, however. Relatively low or inflexible reimbursement levels may be generating strong disincentives for physicians to allot the necessary time and practice infrastructure to coordinate the care of children with complex needs.41 Current reimbursement policies appear to be placing growing pressure on pediatric practices to increase patient volume, primarily for relatively well children. This pressure is also evident in the increased likelihood that primary care pediatricians are more likely now than they were a decade ago to refer complicated patients to specialists.42 Although the American Academy of Pediatrics has consistently advocated for a strong pediatric role in the care of children with special health care needs, considerable evidence indicates that the training of pediatricians has been lacking in this regard.43 Physician comfort with prescribing special therapy and assistive technology may also be problematic.44
Medicaid and Access for Poor Children
Medicaid remains the central publicly funded health insurance program for poor children in the United States. Its reach is wide— it now covers approximately a third of all children in the country and almost half of all births in many states such as California. The importance of adequate health insurance in generating access to high-quality care is difficult to overstate (see the article by Peter Szilagyi in this volume).45 Therefore, the prospects for the continued capacity of the Medicaid program to address the needs of poor, disabled children are worthy of special scrutiny.
Unlike the Medicare program, which is a federally funded entitlement providing broad health coverage for all elderly citizens, the Medicaid program is a combined federal- and state-funded program, specifically dedicated to providing coverage for the poor, the disabled, and elderly nursing home patients. State budgets have become increasingly dominated by Medicaid expenditures, largely because of increases in payments for the care of elderly patients. In mid-2011, thirty-seven states were planning significant reductions in their state Medicaid allocations. These reductions most often take the form of reduced payments to providers and hospitals. In the past, such reductions have had the effect of reducing program participation among low-income women and children. In addition, many states are eliminating "optional" expenditures, those not mandated by federal legislation, that often relate to specialized technical interventions or devices.
Recent legislative actions designed to enhance primary care reimbursement for children could provide a basis for expanding access to Medicaid and perhaps for expanding the presence of the medical home in pediatrics. In addition, new managed care structures currently being developed, such as the accountable care organization (ACO), may be adopted by the Medicaid program. An ACO is an organization that seeks to tie provider reimbursements both to measures of the quality of care provided and to reductions in the cost of care provided to groups of patients. Medicaid's adoption of the ACO could provide a financial foundation for improving the quality of care for children with special health care needs. But such structures have not yet shown that they can appreciably reduce expenditures, so their implementation should not be viewed as permitting major reductions in Medicaid funding for children. In addition, these managed care structures use primary care providers not only as facilitators but also as gatekeepers for a range of specialized services and assistive technologies. Without reimbursement and structural reforms that would provide clinicians the opportunity to coordinate the care of disabled children, including providing them with a medical home, the current child health care delivery system will make it difficult for primary care providers to play such a comprehensive role in an informed and constructive manner.46 Rather, the exploration of new kinds of health financing structures should be seen as a historic opportunity to enhance the ability of the pediatric community to focus its expertise and coordination efforts on children with disabling conditions as part of a more innovative and coherent child health care system.