“Encourage agencies and health care professionals to treat people with MR according to age and health needs, not just for their disability.”
The quality of health care for individuals with MR depends on the knowledge and skills of individual providers, particularly their capacity to engage these patients in their own health care, and on systemic factors. Such factors include monitoring the utilization of health care services and outcomes for people with MR, and correcting deficiencies in the quality of their care, such as medication error, underutilization of services, and failure to interact effectively with patients and family members.
At both the individual provider and health systems levels, credible standards of health care, based on scientific evidence, are essential to improving the quality of health care for people with MR. Until an adequate science base is available, however, consensus standards that reflect the knowledge and experience of recognized experts (including the community of people concerned with health and MR), and are formulated in standardized procedures, are an important interim step. The potential for MR-specific standards to contribute to stigmatization must be balanced against the need for health care services that fully meet the needs of this population.
Potential strategies: Consult with individuals with MR, their families, and their primary and specialty health care providers and researchers to identify priority areas for ensuring and improving the quality of their health care. Identify existing best practices that may be used systemwide to improve the quality of care, and those areas in which better practices may be needed. Use these consultations, together with evaluations of existing and needed scientific knowledge, to establish priorities for improving the quality of health care for people with MR.
Potential strategies: Work with associations of health professionals that develop consensus and science-based standards of care for populations with disabling conditions, for people with MR, and for general populations. Identify and adapt standards developed with the support of the National Institutes of Health, the Centers for Disease Control and Prevention, the Centers for Medicare & Medicaid Services, and other Federal agencies; consult with the National Committee for Quality Assurance and with contractors that develop health care standards for quality assurance in managed care. Identify existing strategies for adapting and developing additional standards of care for use with culturally diverse populations.
Additional strategies: Develop science-based standards on topics for which sufficient scientific knowledge exists. Develop interim, consensus standards on topics for which scientific knowledge must be developed. Replace consensus standards, to the extent feasible, with science-based standards. Review and update standards to reflect new knowledge, as it becomes available.
Potential priority topics for standards: Responsiveness to distinctive cultural values of diverse communities; self-care and maintenance of health-promoting activities; diagnosis and treatment of emotional and behavioral disorders and mental illness; provider screening; and prevention and early intervention in medical, psychiatric, behavioral, and oral health conditions for which individuals with MR are at heightened risk, such as premature aging, and for coexisting conditions, such as diabetes and mental illness.
Other potential priority topics: Recognition and treatment of emergency conditions, including sexual, physical, and psychological abuse and their sequelae; prevention, diagnosis, and treatment of substance abuse; development of plans of care, including self-care, to achieve health goals of individuals and their families; development and revision of lifetime health plans for individuals with MR; age-appropriateness of health services (including pediatric, adolescent, adult, geriatric, palliative, and end-of-life care); and age-related transitions, including pediatric to adult health care.
Potential strategies: Determine whether and how existing standards for care of people with MR are used. Integrate standards of care for MR into the following: clinical practice guidelines; curricula for health professions training; guidance for individuals, their families, their other caregivers, and their primary and specialty care providers; organized health services (including managed care organizations, hospitals, community health centers, and others); and quality assessment and performance improvements in organized health services and individual provider practices.
Additional strategies: Explore methods of linking health care financing to appropriate standards of care for people with MR. Methods could include health care quality requirements in managed care contracts and oversight of such contracts by private and public purchasers, and projects to test such linkage in behavioral health, maternal and child health, family planning, oral health, and comprehensive health care services programs.
Potential strategies: Work with individuals, their families and caregivers, academic institutions, medical, dental, and other health professions societies, and national associations and other interested parties and groups to recognize excellence in providing health care for individuals with MR. Recognition could include financial prizes and nonmonetary awards.