American Academy of Pediatrics. Committee on Children with Disabilities. The treatment of neurologically impaired children using patterning.

This statement reviews patterning as a treatment for children with neurologic impairments. This treatment is based on an outmoded and oversimplified theory of brain development. Current information does not support the claims of proponents that this treatment is efficacious, and its use continues to be unwarranted.

American Academy of Pediatrics. Committee on Children With Disabilities. Care coordination: integrating health and related systems of care for children with special health care needs.

Care coordination is a process that links children with special health care needs and their families to services and resources in a coordinated effort to maximize the potential of the children and provide them with optimal health care. Care coordination often is complicated because there is no single entry point to multiple systems of care, and complex criteria determine the availability of funding and services among public and private payers. Economic and sociocultural barriers to coordination of care exist and affect families and health care professionals. In their important role of providing a medical home for all children, primary care pediatricians have a vital role in the process of care coordination, in concert with the family.

Quality of health care for people with developmental disabilities: the challenge of managed care.

Health care quality issues for people with developmental disabilities under managed care were explored. Health-related quality was defined in terms of four domains: structure, process, outcome, and satisfaction. Three general problems in the assessment of health care quality were identified: lack of quality measures, patient response problems, and lack of system elements. Selected current measurement systems were described in relation to their use for people with developmental disabilities. An approach to developing quality measures was outlined using Healthy People 2000, Health Plan Employer Data Information Set, and clinical practice issues. The movement toward quality improvement was examined and recommendations presented for steps in developing and measuring health care quality.

Mortality of adults with developmental disabilities living in California institutions and community care, 1985-1994.

We compared risk factor-adjusted mortality for California adults with developmental disabilities based on 22,576 adults receiving services in California, 1985-1994. Mortality rates were adjusted for factors such as age and level of functioning. Risk factor-adjusted mortality was 72% higher in community care than in institutions. The mortality pattern over the years 1993-1994, which had not previously been studied, was comparable to that of 1985-1992. The substantially increased risk in community care suggests that community settings may be less effective in preventing mortality in this population.

Overview and implications of Medicaid managed care for people with developmental disabilities.

The inclusion of people with developmental disabilities in managed care as part of general efforts by states to enroll and Medicaid recipients in such plans was reviewed. Managed care was defined and the processes by which managed care organizations deliver services were explained. Escalating costs and utilization were discussed as the primary reason for the shift to managed care. The use of Medicaid Section 1115 waivers by states to include Medicaid recipients was explored. The relation between acute health care and long-term care, and the utilization patterns in each, were briefly described. Finally, elements of managed care that are particularly important to people with developmental disabilities, such as care coordination, maintenance of quality, and individual and family support, were discussed.

Technical elements, demonstration projects, and fiscal models in Medicaid managed care for people with developmental disabilities.

We presented a general model of the structure and functioning of managed care and described elements (provider networks, fiscal elements, risk estimation, case-mix, management information systems, practice parameters, and quality improvement) critical to service delivery for people with developmental disabilities. A number of technical elements of managed care systems were delineated and reviewed in relation to the inclusion of people with developmental disabilities. Several managed care demonstration projects were described and, finally, a multi-year hypothetical budget model, including long-term care, was presented as a framework for considering how managed care affects specific service structures. Implications for people with developmental disabilities were discussed.

Cost-effectiveness of evaluating the new technologies.

The problem of evaluating cost-effectiveness claims is complex and not readily solved. However, such evaluation represents an important direction for technology assessment as resources become more scarce. Neumann et al.'s analysis (1996) represents one solution to the relatively simple problem of pharmacoeconomic studies. In addition, Fryback and Thornbury included a useful method for approaching the cost-effectiveness of all medical technologies. I note that the cost-effectiveness cutoff of $50,000 per quality-adjusted life year is an incremental one, meaning that new technology must be substantially more cost-effective than older technology. This is currently not the case where incremental improvements over previous technology are often quite small. Interested readers are referred to standard tests in the field, including Drummond, Stoddart, and Torrance (1987), Eisenberg (1986), and Sox, Blatt, Higgins, and Marton (1988).

Comparative mortality of people with mental retardation in institutions and the community.

The role of institutions has come into question in recent decades, and the size of the institutionalized population has been drastically reduced. Risk-adjusted mortality rates in institutions and the community in California from 1980 through 1992 were compared, with the aim of improving our understanding of the capacity of the community health system to support deinstitutionalization. Risk-adjusted odds on mortality were estimated to be 72% higher in the community than in institutions. Some problems with health care delivery in the community were reviewed; these may help account for the difference. Consumers and guardians should weight these considerations when making choices between institutional versus community-based care.

An evaluation of care coordination in controlling inpatient hospital utilization of people with developmental disabilities.

All admissions of people with developmental disabilities to a community hospital over 3 years were examined to evaluate the impact of a coordinated care model on length of stay and hospital charges. Admissions were divided into two groups, those receiving either coordinated care (program group) or routine care by community physicians (usual care group). The program group had shorter average lengths of stay and lower hospital charges than did the usual care group, especially when charges were adjusted for case mix. Similarity of severity across the groups was measured by number of discharge diagnoses and Medicaid case weights. Over the 3 years, for the 115 admissions in the program group, these differences amounted to more than $200,000 in potentially unnecessary hospital charges. Implications of care coordination services for community-based health care planning were presented.

Replication of a managed health care initiative for people with mental retardation living in the community.

To improve understanding of the cost-effectiveness of a managed health care program for individuals with mental retardation, we have described financing, utilization, and outcomes of the Developmental Disabilities Center at Morristown Memorial Hospital. The costs and benefits of health care coordination, a key feature of this program, were discussed. Under this model, annual, unreimbursed costs of health care coordination in 1989 averaged $668 for people with severe mental retardation. However, the total reimbursable costs of inpatient care were reduced. In addition, medical outcome data from ongoing research projects suggest that the program has been an important vehicle for improving the health of people with mental retardation in the community. The costs, revenues, and financing of this program were presented in order to assist candidate sites in the replication of this model. The role of this type of program in health care reform was discussed.

Managed health care services for people with mental retardation: impact on inpatient utilization.

All admissions of people with mental retardation to a community hospital during one year were examined to determine the effects of a managed-care model on selected outcome variables. Hospitalization outcomes for patients receiving health care services through the program (care coordination group) were compared to those not enrolled (usual care group). Patients in the care coordination group were found to have shorter hospital stays, when adjusted for diagnosis-related groups; fewer readmissions; and were less severely ill upon admission. Cost data were extrapolated to show that costs of care coordination activities were partially offset by reductions in inpatient utilization.

AIDS and state developmental disability agencies: a national survey.

A survey of state developmental disability agencies was undertaken in October 1987 regarding AIDS policy development, education, and training and service provision. Of 44 states responding to the 27-item questionnaire, only 21 had formal AIDS policies. Policies varied considerably from state to state. Twenty-five of the responding states include information on AIDS in their staff training curriculum, with such training more likely to be provided to institutional staff than to community-based staff. Only 10 states reported AIDS prevention to be part of their client training programs, with training more likely to be found in institutional settings. Eleven states reported HIV positive cases, with such cases found more often in institutions than in community settings. Several states reported some type of segregation of HIV positive individuals. Policies, educational programming, and services to meet the special needs of persons with developmental disabilities are called for.

HIV infection and developmental services for adults.

The achievement of community living and greater personal independence has placed adults with developmental disabilities in a potentially vulnerable position regarding acquisition of HIV infection. Early surveys have identified a limited number of individuals who have become infected. Few states have undertaken planning for assurance of appropriate services. Program managers must consider the diverse educational and ethical issues involved; advisory committees can be of assistance. Strong antidiscrimination measures will be required for the protection of adults with developmental disabilities and HIV infection.

The provision of services to persons with mental retardation and subsequent infection with human immunodeficiency virus (HIV).

We present the first reported cases of individuals with mental retardation who have subsequently become infected with human immunodeficiency virus (HIV). The implications of this finding for agencies which provide services to persons with mental retardation are described. Where conflicts arise, the authors propose that ethical review committees provide consultation to service agencies who must ultimately determine how they will provide for the needs of their clients.