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Office of the Surgeon General (US); National Institute of Child Health and Human Development (US); Centers for Disease Control and Prevention (US). Closing the Gap: A National Blueprint to Improve the Health of Persons with Mental Retardation: Report of the Surgeon General's Conference on Health Disparities and Mental Retardation. Washington (DC): US Department of Health and Human Services; 2002.

Cover of Closing the Gap: A National Blueprint to Improve the Health of Persons with Mental Retardation

Closing the Gap: A National Blueprint to Improve the Health of Persons with Mental Retardation: Report of the Surgeon General's Conference on Health Disparities and Mental Retardation.

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Goals and Action Steps

GOAL 1: Integrate Health Promotion into Community Environments of People with Mental Retardation

"Health promotion programs should accommodate people with MR. Examples include smoking cessation, weight control, fitness, safe sex, drugs, and alcohol."

As with other populations, health promotion and disease prevention are multifactorial for individuals with MR. They need to be empowered with adequate and understandable information and reinforcement to avoid health risks and maintain healthy personal habits. Their health care providers and the environments where they live, work, learn, and socialize should offer opportunities to inform, support, and reinforce healthy lifestyles. Routine preventive services, from periodic oral prophylaxis and restoration, to cancer screening, immunizations, and early intervention with emerging mental illness are critical to prevention of more serious conditions and secondary disability. Because of the potential for modeling behaviors, health-promoting knowledge and habits of personal care attendants and family members, co-workers, and others can help individuals with MR to protect and maintain their health.

Action Steps

Wellness: Educate and support individuals with MR, their families, and other caregivers in self-care and wellness

Potential strategies

Adapt self-care and wellness programs designed for general populations and cultural, ethnic, and socioeconomic minorities to the needs of individuals with MR. When proven effective, replicate existing programs for individuals with MR, especially peer-designed programs for wellness, self-care, and mental health. Evaluate the use of assistive technology and different media in educating and reinforcing healthy behaviors in individuals with MR, their families, and their caregivers. Develop and disseminate models for health care provider counseling and reinforcement of wellness and healthy behaviors in individuals with MR, their families, and caregivers.

Potential topics

Nutrition and weight control; exercise; oral health; family planning; safe sex; strategies for protection from rape, domestic violence, and sexual abuse; maintaining treatment regimens; avoiding medication errors; recognizing and seeking care for emerging disorders; and age-related changes in, and risks to, health status.

Caregiver support: Develop and implement strategies for reducing care burdens for families of individuals with MR, and reducing high rates of turnover in nonfamily caregivers

Potential strategies

Identify stressors and sources of resilience in individuals with MR, their families, and their caregivers, and support strategies to enhance resilience. Support respite care, case management, advance (lifetime) planning for transitions to different stages of life and age-associated health needs. Provide assistance in caring for individuals with dual diagnosis, including family and caregiver training in behavior management and advance planning for behavioral crises. Provide technical assistance to families in information technologies, including how to use the Internet. Explore compensation, including basic health coverage, for family caregivers whose care responsibilities prevent them from working outside the home.

Additional strategies

Provide training in health care, including supporting healthy habits, for personal care attendants and other caregivers. Create career tracks leading to certification of caregivers with regard to health-related competencies. Support basic health care coverage and increased compensation, commensurate with demonstrated health competencies, for caregivers.

Workplace: Protect the health of individuals with MR from occupational hazards

Potential strategies

Develop and disseminate modules to educate and train individuals with MR, their employment counselors and job coaches, their families and caregivers, their employers and potential employers, and occupational health and safety inspectors, in recognizing and eliminating hazardous working conditions that may require special accommodations for employees with MR. Potential accommodations include ensuring that employees with MR work in safe and healthful environments and understand how to avoid repetitive motion disorders and other occupational hazards.

Assessment: Assess the effects of health promotion and wellness activities for individuals with MR on their morbidity, secondary disability, mortality, life satisfaction, independent living, achievement of life goals, and cultural and ethnic identity

GOAL 2: Increase Knowledge and Understanding of Health and Mental Retardation, Ensuring that Knowledge Is Made Practical and Easy to Use

"We're invisible in the data. We can't make people believe we need more services if we don't have data to back us up."

Credible scientific knowledge is considered essential to all goals in this Blueprint, from establishing appropriate standards of health care, to training health care providers, to revising financing structures, and improving the capacity of individuals and their families to protect and maintain their health. For example, the lack of population-based data on prevalence of MR and the health status and service needs of this population impedes planning and allocating resources for their care. Failure to monitor the quality of their care hampers detection of prejudicial or inadequate treatment. Recent advances in neurosciences, genetics, psychopharmacology, and other fields of research could improve the diagnosis and treatment of individuals with MR and emotional, behavioral, or psychiatric disorders (dual diagnosis). At the same time, individuals, family members, and health care providers need easily accessible, scientifically accurate, culturally relevant, and understandable information for prevention and health promotion, as well as for diagnostic and treatment decisions. All aspects of health-related research, from biomedical and epidemiologic to health services and ethics, offer multiple opportunities to increase and improve the utility of scientific knowledge on health and MR.

Action Steps

Participation: Enable individuals with MR, their families, and their health care providers to partner with professional investigators in identifying health research priorities, and in designing and implementing research relating to health and MR

Potential strategies

Include individuals with MR, family members, and their primary and specialty health care providers in research advisory committees and planning groups to provide input into the development of research proposals and grant submissions. Offer training to lay advisors in identifying research questions and other technical matters. Encourage federally funded health researchers to develop partnerships in which persons with MR, their family members, and other caregivers, including health care providers, are consulted and participate in the planning and conduct of research relevant to MR.

Research agenda: Develop a national research agenda that identifies gaps in existing scientific knowledge related to health and MR, including methodological challenges, priorities, feasibility, and timetables for achieving priority research

Potential strategies

Develop specific agendas for basic, clinical, and translational research; for studies of the efficacy of wellness and treatment services and service models for people with MR; for legal and ethical issues, health care financing, and its relationship to outcomes; and for other matters identified by the community. Implement the December 2001 research agenda of the Workshop on Emotional and Behavioral Health in Persons with Mental Retardation/Developmental Disabilities (National Institutes of Health, Workshop on Emotional and Behavioral Health in Persons with Mental Retardation/Developmental Disabilities: Research Challenges and Opportunities, November 29-December 1, 2001). Enhance research collaborations across multiple research agendas and disciplines.

Data collection: Collect data on the health status of persons with MR in relation to the utilization, organization, and financing of their health services

Potential strategies

Identify and evaluate existing data on health and MR. Add MR to populationbased data collection on health status, health risks, health services utilization, and health care costs. Test methods of identifying patients with MR on Medicaid and other third-party payer claims for purposes of collecting data, while also protecting patient confidentiality. Conduct market research to determine attitudes toward MR of health care providers, and how to change negative attitudes. Survey individual practices, managed care organizations, and localities and States to better understand the experiences of individuals with MR when they seek health care.

Research subject protection: Review current ethical and legal rules for protection of human research subjects as they relate to individuals with MR. Revise these rules as necessary to facilitate the participation of persons with MR in clinical trials and other types of research, with full protection of their autonomy, health, and safety. Ensure that individuals, their families, their health care providers, and their advocates participate as partners in reviews and revisions of these rules. Ensure their participation in Institutional Review Board (IRB) reviews of research proposals relating to MR

Potential strategies

Provide training in legal and ethical rules for protection of human research subjects to lay participants in review and the revision of these rules. Provide training in IRB standards and procedures.

Understanding and use: Provide assistance for individuals with MR, their families, and their health care providers in finding, evaluating, and using health research findings to help in the prevention, diagnosis, and management of medical (including psychiatric), psychological, and oral health conditions, and to inform treatment decisions by individuals and their families

Potential strategies

Establish, and keep current, a national clearinghouse, a website, and a list-serve to guide users in identifying and evaluating research, and to promote their exchange of information and opinions. Design science-based continuing education curricula for licensed health care providers. Translate peer-reviewed journal information, reports of evidence-based best practices, and other findings for lay consumption, and disseminate information to provider groups, and State agencies that serve persons with MR, and provider trade journals.

Research capacity: Increase the number of investigators trained in health and MR research

Potential strategies

Fund undergraduate training and postdoctoral research fellowships at medical, dental, and other health professions schools and training programs targeted specifically at issues relevant to MR. Solicit proposals for multidisciplinary research. Solicit proposals from centers and programs that provide health care to individuals with MR, especially those living in their communities. Solicit joint proposals from these providers and investigators at medical, dental, and other health professions schools and programs.

Visibility: Enhance the visibility of health and MR research

Potential strategies

Increase and ensure appropriate use of funds to support research on health and MR, including expansion of studies on dual diagnosis and other disorders for which individuals with MR are at elevated risk. Create prizes and other awards for excellence in health and MR research. Endow chairs for health and MR research at health professions schools. Establish special interest sections in health research organizations. Support special plenary lectures on health and MR at national medical, dental, and other health professions meetings. Publish health and MR research findings in peer-reviewed medical (including psychiatric), dental, psychological, nursing, physician assistant, dental hygienist, and other health-related journals, as well as in health services research and policy journals.

GOAL 3: Improve the Quality of Health Care for People with Mental Retardation

"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 MRspecific standards to contribute to stigmatization must be balanced against the need for health care services that fully meet the needs of this population.

Action Steps

Priorities: Identify priority areas of health care quality improvement for persons with MR

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.

Standards of care: Identify, adapt, and develop standards of care for use in monitoring and improving the quality of care for individuals 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 selfcare, 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 agerelated transitions, including pediatric to adult health care.

Use: Ensure that the practice, organization, and financing of health care services for individuals with MR promote improvement in their quality of 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.

Recognizing excellence: Establish local, regional, and national awards that recognize excellence in providing health care to individuals with MR

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.

GOAL 4: Train Health Care Providers in the Care of Adults and Children with Mental Retardation

"The number one issue is lack of training to support healthy lifestyles [for individuals with MR] across the lifespan."

The challenges and rewards of treating individuals with MR are rarely addressed in the training of physicians and other health care professionals. However, anecdotal evidence and limited data indicate that opportunities for clinical experiences with these patients, early in medical and other health professions training, increase the capacity of providers to value and accept these patients into their practices.

Action Steps

Professional education: Integrate didactic and clinical training in health care of individuals with MR into the basic and specialized education and training of all health care providers

Potential strategies

Evaluate existing health professions training curricula that address health and MR and disseminate those found to be efficacious. Partner with families and individuals with MR to develop and implement training modules. Use providers experienced in the care of individuals with MR and family members to mentor health professions students, residents, and fellows in the care of this population. Develop and implement criteria for accreditation and certification of health professions schools and training programs, based on inclusion of mental retardation in their curricula.

Potential curriculum topics

Dual diagnosis; health risks and expression, in people with MR, of agerelated conditions found in other populations; direct interactions with these patients, such as historytaking, including cultural practices, diagnosis, treatment, and counseling and supporting individuals in wellness and in adherence to treatment regimens; appropriate use of medications and alternative behavior management techniques; working with individuals and their families to develop and update goal-oriented health care plans, including lifetime plans and plans for transition points; and use of augmentative communications devices and other specialized equipment.

Interdisciplinary education and training: Support development and dissemination of effective training modules in interdisciplinary practice. Design modules to include social workers, family members, individuals with MR, and others, when relevant, such as teachers, personal care attendants, job counselors, and frontline office staff

Provider competence: Develop methods of evaluating and improving health provider competence in the health care of individuals with MR. These methods should be based on appropriate standards of care, including care that reflects understanding and respect for diverse cultures, and should be used to evaluate the competence of students and practicing providers, and to provide feedback and reevaluation of their performance

Continuing education: Develop, evaluate, and disseminate continuing education curricula for health care providers at all levels of practice in the care of individuals with MR. Such curricula should be based on appropriate standards of care and include training opportunities that reflect understanding and respect for diverse cultures

GOAL 5: Ensure that Health Care Financing Produces Good Health Outcomes for Adults and Children with Mental Retardation

"Let's develop reimbursement that is respectful of the diverse lifestyles of people with MR and their families and that is tied to outcomes they value, [but] be careful...that we don't develop policies that will cover more people, with more flexibility, without ensuring the basic level of care that we know our people need."

High rates of poverty among adults and children with MR mean that a large proportion of them rely on publicly financed health care insurance, which is not always well-adapted to serving their needs. People with MR find that many providers avoid the program, citing low reimbursement rates, administrative burden, and fear of being inundated with underfinanced patients. Providers who are committed to treating individuals with MR report that restrictive Medicaid rules on which services are covered, in which settings, can limit use of innovative service models.

Families with private-sector coverage encounter gaps in coverage, unaffordable premium payments, and little flexibility in designing packages of services to meet their children's needs. Cost-avoidance and cost-shifting by both public and private payers force families to try to mediate between special education programs and third-party payers and between longterm and acute care systems. Research and understanding of financing structures, to better accommodate service needs of individuals with MR, are hindered by lack of critical utilization and reimbursement data.

Action Steps

Outcomes and financing: Determine relationships among diverse financing mechanisms, service packages, and health outcomes for individuals with MR. Use findings to ensure accountability of flexible arrangements for financing services

Potential strategies

Test effects on health outcomes, for people with MR, of diverse models for providing health care services, service packages, and financing mechanisms. Identify factors in varying combinations that affect outcomes. Determine effects of adjunct services, including respite care, transportation, child care, and case management, in combination with medical, dental, and other health services, on outcomes. Support longitudinal studies of portability of health services packages as educational, employment, and residential circumstances change. Develop methods of ensuring accountability for sufficiency and quality of health care services, including accountability for outcomes, in models for flexible health service financing.

Definitions: Use appropriate definitions of "effective," "cost-effective," and "health outcomes" in research, organization, and financing of health care for individuals with MR

Potential strategies

Explore expanding definitions of terms used in measuring the effects of health care financing and service models to include wellness, functionality, patient and family understanding of health maintenance and treatment regimens, capacity for consumer choice among services, and satisfaction and individualization of service packages. Calculate health care costs across all systems with responsibility for health care of individuals with MR, such as special education, and third-party payments for behavioral therapy. Support development of methods to determine cost-effectiveness of services over the lifespan, taking into consideration cost offsets among long-term, preventive, and acute care, and other factors.

Services: Identify a package of health care services for individuals with MR that will produce good outcomes in terms of health maintenance, management of illness, functionality, and life goals across the individual's lifespan

Potential strategies

Review currently available public and private packages of health care and supportive services for cost, quality, and consumer satisfaction. Test models of comprehensive lifetime coverage to better meet the needs of persons throughout their lives and avoid age-related disruptions of financing and services. Assess the use of criteria, including acquiring and maintaining functionality for making decisions on coverage.

Leveraging: Evaluate models for leveraging health dollars to maximize purchasing power by and for individuals with MR. Ensure that individuals' coverage and access to primary and specialty health care and support services are not eroded by revisions in purchasing practices and policies

Potential strategies

Evaluate models for coordinated funding of pediatric, adolescent, adult, and geriatric care, including acute and long-term care, primary care, specialty services, and school-based services, through use of pooled funds, complementary financing from multiple funding streams, and other innovations. Evaluate models for tying funding mechanisms to good outcomes, as defined in the first action step. Evaluate models that enable individuals with MR and their families to choose needed health services on an individualized basis and to monitor outcomes and service utilization. Encourage thirdparty payers to reimburse for health care services in carefully monitored clinical trials and other studies at academic centers of excellence.

Additional potential strategies

Provide technical assistance to States, tribes, and health care programs and providers in using Medicaid authorities to finance innovative models for providing health care, and identify and eliminate financial disincentives for such models. For example, payer rules limiting reimbursements to one visit per patient per day may mean that families must make multiple appointments with multiple providers to complete multidisciplinary assessments. Evaluate and replicate the use of incentives, such as enhanced Medicaid reimbursement rates, to encourage States to develop and/or replicate effective models that meet the needs of individuals typically not covered.

Cost offsets: Explore strategies to offset financial costs to providers and health services programs that are associated with meeting specialized needs of patients with MR

Potential strategies

Assess the relationship between different rates of Medicaid and Medicare provider reimbursement and any impact on access to health care for individuals with MR. Identify sources and amounts of costs to providers that are associated with meeting specialized needs of individuals with MR. Assess the effect of offsetting such costs on provider acceptance of individuals with MR. Assess combined and separate effects of cost-offsets and nonfinancial provider supports, described elsewhere in the Blueprint, on provider acceptance.

GOAL 6: Increase Sources of Health Care Services for Adults, Adolescents, and Children with Mental Retardation, Ensuring that Health Care is Easily Accessible for Them

"Services can be wonderful and high quality, but if there aren't enough, or if you can't get to them, or if you don't know about them, [they're of] no help to you...."

Like other Americans, especially those who are poor and disabled, people with MR are confronted with a fragmented health care system in which primary and specialty sources of care are often poorly distributed, inadequate in number, and ill-equipped to respond to their needs.

Action Steps

Diversity: Increase the number of physicians, dentists, clinical psychologists, and allied health care professionals who have appropriate training and experience in treating adults, adolescents, and children with MR, including those from socioeconomically and linguistically diverse communities

Potential strategies

Recruit students, residents and fellows, and practicing providers from diverse communities, and train them in providing health care to individuals with MR. Establish health professions curricula and continuing education modules in cultural competence in relating to patients with MR. Work with spiritual and other leaders who know the cultural and ethnic beliefs, values, and primary languages of individuals and families in diverse communities to plan and provide health care services, develop health professions training curricula, and otherwise ensure responsiveness to diverse ethnic, cultural, and linguistic needs in all aspects of health care for individuals with MR and their families.

Easier access: Make access to health care services less complicated for individuals with MR and their families and caregivers, whether in urban, rural, or remote communities

Potential strategies

Ensure that independent service coordinators who work on behalf of clients to locate and ensure access to and coordination of services are available for individuals with MR who wish such assistance. Co-locate primary and specialty medical, psychiatric/psychological, and dental services. Support multidisciplinary teams, including mobile teams to bring services to individuals' homes, schools, and other nonclinical sites. Ensure that individuals with MR receive assistance in care coordination and transportation to health care services. Ensure that individuals and families in various community settings receive usable information about available health care in their communities.

Additional strategies

Review eligibility to reduce the need for multiple applications and multiple determinations of eligibility for services. Promote the use of presumptive eligibility, once initial eligibility is established, for services through Medicare or Supplemental Security Insurance (SSI)/Medicaid.

Community-based care: Integrate health care services for individuals with MR into diverse community programs

Potential strategies

Incorporate preventive health education and interventions into early intervention and special education plans. Support development of protocols and dissemination, for care of individuals with MR and coexisting conditions, at community and migrant health centers, community mental health services, addiction disorder services, family planning programs, rape/sexual abuse and family violence services, public health clinics, and other publicly funded, community-based health services and programs. Prohibit such programs and services from excluding individuals solely on the basis of IQ.

Health professionals: Expand the types of health professionals used in providing health care to individuals with MR, including geriatric, pediatric, and other nurse practitioners and nurses, physician assistants, dental hygienists, and behavioral therapists

Potential strategies

Identify and remove disincentives and barriers in Medicaid, Medicare, and private third-party payer reimbursements to expand the use of a wide variety of health professionals to care for persons with MR.

Supporting providers: Support supplementary services to help physicians, dentists, psychologists, and other providers and organized health services in providing care to individuals with MR

Potential strategies

Work with providers to identify nonfinancial "costs" in including individuals with MR in their practices and programs. Support needed services that could offset such "costs." Such services could include technical assistance with Medicaid and other types of claiming, case managers, preliminary health screening and referrals, completing informed consent procedures, and assembling complete and current medical and dental histories (including family histories) of individuals with MR. Explore the use of "health passports" (copies of up-todate health histories, including family history) that "travel" to health services with individuals with MR.

Special equipment: Ensure that adaptive equipment and assistive technologies are available in urban, rural, and remote communities for use at clinical sites where individuals with MR receive health care

Potential strategies

Provide support to health care providers to finance the costs of purchasing and installing special equipment and modifications to practice sites, such as installation of automatic doors, specialized examining tables and chairs, and wheelchair-accessible bathrooms. Evaluate and support the use of overhead allowances, direct subsidies, cost- and time-sharing among providers, and other mechanisms for offsetting costs of acquiring (and, as necessary, training in the use of) specialized equipment.

Lifetime health: Ensure continuity of health care services throughout the life of an individual with MR

Potential strategies

Develop and implement State plans for providing age-appropriate, comprehensive, and continuous health services for individuals throughout their lives. Develop and disseminate models for individual lifetime health care plans, with periodic review and updates.

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