A cascade of disparities: health and health care access for people with intellectual disabilities

People with ID represent approximately 2% of the population and, as a group, experience poorer health than the general population. This article presents recent conceptualizations that begin to disentangle health from disability, summarizes the literature from 1999 to 2005 in terms of the cascade of disparities, reviews intervention issues and promising practices, and provides recommendations for future action and research. The reconceptualization of health and disability examines health disparity in terms of the determinants of health (genetic, social circumstances, environment, individual behaviors, health care access) and types of health conditions (associated, comorbid, secondary). The literature is summarized in terms of a cascade of disparities experienced by people with ID, including a higher prevalence of adverse conditions, inadequate attention to care needs, inadequate focus on health promotion, and inadequate access to quality health care services. Promising practices are reviewed from the perspective of persons with ID, providers of care and services, and policies that influence systems of care. Recommendations across multiple countries and organizations are synthesized as guidelines to direct future action. They call for promoting principles of early identification, inclusion, and self-determination of people with ID; reducing the occurrence and impact of associated, comorbid, and secondary conditions; empowering caregivers and family members; promoting healthy behaviors in people with ID; and ensuring equitable access to quality health care by people with ID. Their broadscale implementations would begin to reduce the health disparity experienced by people with ID.     

Federal civil rights policy and mental health treatment access for persons with limited English proficiency

As noted in the supplement to the U.S. Surgeon General's report on mental health (U.S. Department of Health and Human Services, 2001), overcoming language access barriers associated with limited English proficiency (LEP) should help to eliminate racial and ethnic disparities in mental health care access and quality. Federal policy requires remedial action to overcome language barriers: Under Title VI of the Civil Rights Act of 1964, Medicaid and other federally funded programs must provide assistance to LEP persons. Some state-level public and mental health authorities have responded by instituting "threshold language" policies. The history and terms of federal civil rights policy, and of threshold-language-policy-inspired initiatives, should be understood by everyone concerned with overcoming ethnic disparities in mental health services use. Concerned parties should promote implementation of required measures for language assistance and help to evaluate their implementation and effectiveness.     

The Application of Behavior Change Theory to Family-Based Services: Improving Parent Empowerment in Children’s Mental Health

We describe the development of a parent empowerment program (PEP) using a community-based participatory research approach. In collaboration with a group of dedicated family advocates working with the Mental Health Association of New York City and state policy makers, academic researchers took an iterative approach to crafting and refining PEP to better prepare family advocates to help bridge the gaps in service access among children with emotional and behavioral problems. Despite the growth of family-led, family support programs nationally, research that demonstrates the positive benefits of such programs is scarce in the children’s mental health literature. The PEP model is based on research data about barriers families face in mental health service utilization (e.g., stigma, perceptions of providers, attitudes towards mental illness, service availability, etc.). PEP is premised on (a) the concept of empowerment as a process, (b) the need to engage parents in becoming active agents of change, and (c) the application of an integrated framework to empower parents, called the Parents as Agents of Change model. Our paper focuses on describing the application of a Unified Theory of Behavior Change as a theoretical framework to help activate parents as change agents in meeting their children’s mental health needs. Based on an integrated model of grassroots driven Principles of Parent Support and research-based Unified Theory of Behavior Change, PEP’s Parents as Agents of Change model provides a conceptual framework for testing the effectiveness of family support services in children’s mental health, a much-needed area for future research.     

Reducing AIDS-related stigma in developing countries: the importance of theory- and evidence-based interventions

In many developing countries persons living with HIV and AIDS experience strong stigma and discrimination, and AIDS-related stigma has an enormous negative impact on their social relationships, access to resources, and psychological well being. Moreover, AIDS-related stigma hampers HIV-related health promotion, including voluntary HIV counselling and testing. In this article, we will argue that programs to reduce AIDS-related stigma are most likely to be effective if these programs are based upon thorough needs assessments, theory- and evidence-based intervention strategies and collaborative planning. A protocol for health promotion programs design is outlined. Furthermore, psychosocial correlates of AIDS-related stigma in developing countries, social-psychological theories that might be useful in designing intervention strategies to reduce stigmatisation and successful elements of previous interventions aimed at stigma reduction are discussed. It is concluded that psychological theory does provide guidelines for the development of stigma-reducing intervention programs, but that such programs can only be effective when based upon context-specific needs assessment and collaborative planning.     

Provider contact with families of adults with severe mental illness: taking a closer look

This exploratory study examined the frequency and nature of providers' contact with families of persons with severe mental illness. Fifty-nine providers in six community mental health programs completed a self-administered survey. A subsample of 8 providers also completed two in-depth interviews. Although most providers had some family contact, the contact was restricted to a small percent of their caseloads. The nature of contact that providers have with families is generally limited by their professional role. Best practice guidelines for the treatment of mental illness and agency administrators responsible for instituting these guidelines will need to clarify the types of providers who are expected to implement various aspects of family involvement.     

Treating Transgender Individuals in Inpatient and Residential Mental Health Settings

This article describes the need for specific guidelines regarding how to manage inpatient and residential mental health programming with respect to transgender individuals. The article discusses what is known about transgender mental health and how it is related to sociopolitical factors, how inpatient and residential programs can address the impact of sociopolitical factors on transgender individuals and send a welcoming message to prospective consumers, how programs can attend to policies and procedures in ways that create the best milieu for an inpatient or residential unit that provides care for one or more transgender individuals, and how providers and interdisciplinary teams can meet the unique clinical needs of transgender individuals. These guidelines are designed to assist providers in creating a safe environment that affords quality inpatient and residential mental health care to transgender individuals.     

Guidelines for Writing Letters to Patients

Patient letters provide a permanent record of the genetic counseling that was provided and are unique in medical care; rarely do other health care providers send summaries written specifically to their patients and families. We surveyed genetic counseling training program directors and found that while the acquisition of patient letter-writing skills was considered important, there were no specific guidelines made available to students. To develop letter-writing guidelines, we evaluated patient letters, reviewed references on professional correspondence, surveyed the medical literature, and worked with a writing consultant. The guidelines we subsequently developed and present here include a format for writing patient letters, suggestions on presenting medical information in understandable terms, and wording considerations. These patient letter-writing guidelines are intended to serve as a guide for teaching students this important skill and as a resource for practicing health care professionals.     

Two pathways to prevention

Health promotion and disease prevention programs are becoming important components of contemporary health care. There are at least 2 pathways to the enhancement of population health status through disease prevention. The first pathway requires the early diagnosis and treatment of disease. The second pathway promotes healthy lifestyles and disregards the requirement that a condition must be diagnosed before intervention is recommended. Data from several evaluations suggest that prevention efforts that rely on diagnosis have produced somewhat limited benefits, whereas primary prevention efforts may have substantial benefits. Current health policy places greater emphasis on secondary prevention. The objectives of improved population health might be better achieved by devoting relatively more resources to primary prevention through the promotion of healthy behaviors.     

Psychology and Medical Rehabilitation: Moving Toward a Consumer-Driven Health Care System

Changes in health care will provide both opportunities and threats for rehabilitation psychologists. We must demonstrate the relevance of our clinical services to important outcomes or risk being excluded as treatment providers. With shifts to nonhospital settings, we can provide increasing clinical and administrative leadership. However, we must redefine models of treatment to include home care and telepsychology, practice guidelines and critical paths, involvement of paraprofessionals, case management, injury prevention, and health promotion. We should be involved when datasets are established to define disability-related health policies and reimbursement and be proactive in Medicare, Medicaid, and managed care reform to develop treatment packages to decrease long-term handicap. Collaboration with consumers is critical. We must frame research questions to address current policy issues. Our skills can help improve the effectiveness of human behavior, whether it be patients with illness, consumers with disability, health care providers, health systems managers, or legislators.     

Integration of Spiritual Care in Hospital Care System in Iran

There is a growing body of evidence on the positive effects of religion and spirituality on recovery from cancer and the ability to cope with it. Most spiritual interventions carried out in Iranian research are based on care and support models that have been developed in the West. With the unique cultural and religious features of the Iranian context, a more refined look at spiritual care in the hospital care system of Iran is called for. This paper examines how to implement the spiritual care of cancer patients in hospitals and oncology wards in Iran. A consensus panel of experts was used to develop guidelines for spiritually integrated care consisting of 18 primary areas, which are described in detail in this report. Health care policy makers and managers of health care in Iran and possibly other areas of the Middle East should consider implementing these guidelines. Using indigenous models and programs specific to the religion and the cultural of a region should be considered when providing spiritual care for cancer patients.

     

Employee fitness and wellness programs in the workplace

Worksite fitness and health promotion programs have grown exponentially in the past 15 years. To examine the impact of these programs, the literature through 1988 was reviewed. In general, fitness and wellness programs result in increased levels of fitness and a reduction in the risk factors for coronary heart disease. Recent research using control groups has found relations between reduction in health care costs, absenteeism, and turnover and implementation of comprehensive health promotion programs. Issues related to participation rates, program implementation, and evaluation are also addressed.     

Health care and the prospective Pareto principle

Issues of social justice in access to health care are examined from the standpoint of the "prospective," or "ex ante," Pareto principle, an ethical principle which holds that one policy is to be preferred over another if it betters the prospects of some persons while the alternative betters no one's prospects. It is suggested that this principle may validate a form of utilitarianism in health policy decisions, with equity demanding that everyone have access to a decent minimum of care but not necessarily to all highly expensive treatments.     

Systemic training for healthcare professionals: the Chicago Center For Family Health approach

There has been increasing interest in family-centered, collaborative, biopsychosocial models of care by health and mental health professionals and consumers. This trend has led to growing demand and development of specialized training in family systems approaches to health care. This article describes the Families, Illness, and Collaborative Healthcare programs developed at the University of Chicago affiliate, the Chicago Center for Family Health. The program philosophy is guided by the following principles: a systems orientation focused on the family, a Family Systems Illness Model, a family resilience framework, a family-centered collaborative model of health care, and a social justice and advocacy orientation. Specific training components that implement these principles are described, including intensive certificate and fellowships; workshops, conferences, and institutes; and consultation and training services for community-based organizations. Discussion includes professional networking opportunities, funding challenges, and policy recommendations.     

Collaborative Home-Based Therapy (CHBT): A Culturally Responsive Model for Treating Children and Adolescents Involved in Child Protective Service Systems

Mental Health professionals are challenged with utilizing innovative treatment models to meet the needs of diverse communities. Enhancements in interventions have led to a reconceptualization of the role of mental health professionals, specifically, family therapists. This paper presents a collaborative, home-based model for working with children and adolescents involved in foster care. We begin by examining literature on home-based therapy. This review provides a framework to understand the need for a culturally responsive approach. A collaborative, home-based approach is presented along with unique issues and guidelines for practice. A clinical case is presented to illustrate implications for treatment.     

Ethical and Legal Issues Addressing the Use of Mobile Health (mHealth) as an Adjunct to Psychotherapy

mHealth refers to the rapidly evolving use of mobile devices for health care treatment purposes, particularly the use of apps and texting as adjuncts to psychotherapy. Although there is currently an extensive literature on issues related to telehealth, to date little guidance has been developed to help professionals function ethically in the rapidly emerging area of mHealth. This article identifies the major ethical considerations that need attention and proposes several recommendations to address mHealth use as an adjunct to psychotherapy, including the pressing need for relevant American Psychological Association practice guidelines to assist mental health providers in the ethical implementation of mHealth.     

Psychological management intervention guidelines for rape survivors with post-traumatic stress disorder (PTSD): A brief exploratory systematic literature review

This exploratory systematic literature review aimed to characterise the current evidence on psychological management intervention guidelines for use with rape survivors with post-traumatic stress disorder (PTSD) symptoms. For the data searches we accessed the following electronic databases: Google Scholar, Science Direct, EBSCOhost, and PsychInfo. We utilised search terms with variations of the following key words: psychological management guidelines of PTSD*, rape survivors*. Inclusion criteria were guidelines for rape survivors with PTSD that consider referral, treatment, and preventive and health promotion in an international setting. We excluded guidelines that did not address PTSD resulting from rape in an international setting. We employed a narrative synthesis data analysis approach to integrate the evidence from across studies. Findings suggest prevalent guidelines for rape survivors with PTSD focus on cognitive behavioural therapy and other psychological management interventions in highly specialised areas and Primary Health Care (PHC) settings in international countries, but not in other countries such as South Africa. Emerging guidelines are needed for PTSD psychological management interventions in rape care clinics situated in South Africa.     

Rural mental health in America

Mental health services are in short supply in rural America. This article describes both the mental health service needs in rural areas and the barriers to improving the availability, accessibility, and acceptability of rural mental health services. Federal programs in rural mental health care in the Departments of Health and Human Services, Agriculture, and Education are described, as well as selected congressional initiatives. The role of the federal Office of Rural Health Policy is emphasized, and policy recommendations for improving rural mental health care delivery are presented.     

Primary Care Medical Provider Attitudes Regarding Mental Health and Behavioral Medicine in Integrated and Non-integrated Primary Care Practice Settings

Primary care medical providers (PCPs) have become de facto providers of services for the management of both mental and chronic illnesses. Although some reports suggest that PCPs favor having Behavioral Health colleagues provide behavioral health services in primary care, others demonstrate this view is necessarily not universal. We examined attitudes regarding behavioral health services among PCPs in practices that offer such services via onsite behavioral health providers (n = 31) and those that do not (n = 62). We compared referral rates and perceived need for and helpfulness of behavioral health colleagues in treating mental health/behavioral medicine issues. In both samples, perceived need was variable (5?C100%), as were PCPs?? views of their own competence in mental health/behavioral medicine diagnosis and treatment. Interestingly, neither sample rated perceived access to behavioral health providers exceptionally high. Referral rates and views about the helpfulness of behavioral health services, except in relation to depression and anxiety, were lower than expected. These results suggest a need for increased collaboration with and education of PCPs about the roles and skills of behavioral health professionals.     

The future of genetics in public health

During the 1980s, we have witnessed an erosion in federal and state funding for the coordination of genetic services in state health departments. As this decade begins, the federal budget for the support of the national genetics program is less than half of the total available in 1980. In addition, priorities in state maternal and child health programs have changed, and genetic services have often received lower rankings aside of programs to improve prenatal care and to address problems such as teenage pregnancy. Clearly we are at a critical point for the future of genetics programs in the public health arena. Fortunately, despite the problems with funding and priority setting, important coalitions have been built during the past decade and continued advances in medical genetics have made it difficult for public health officials to ignore the potential impact of genetic services. Council of Regional Networks for Genetic Services (CORN) and the regional genetic services networks have provided opportunities for interaction and coordination between genetic services providers and public health officials that had not been available to any significant extent. The full potential of these coalitions has yet to be realized, but efforts in data collection, development of national guidelines and standards, and information sharing and networking have already had an influence on state genetic services programs. Continuing research on the genetics of chronic diseases and the influence of discoveries in molecular genetics will undoubtedly broaden the current scope of state public health programs in genetics, which all too often have been limited to newborn screening and administration of grants for genetic services. The regional and national genetic services programs should be strengthened and appropriate training programs should be developed in Schools of Public Health to provide the expertise and leadership that will be needed to guide the future of genetics in public health.     

Clinician competencies: Strengths and limitations for work with transgender and gender non-conforming (TGNC) clients

Individuals who identify as transgender or gender nonconforming (TGNC) face a number of health disparities compared to individuals who identify as cisgender (those who self-identify with the sex they were assigned at birth). For example, TGNC individuals experience heightened rates of clinical depression, anxiety, general psychological distress, suicidal ideation, and suicide attempts. Despite these troubling disparities, many TGNC individuals report hesitance to seek mental health services due to concerns regarding culturally insensitive or even overtly discriminatory services from providers. In addition to decreasing service utilization among TGNC populations, discriminatory services impair intervention effectiveness even when TGNC individuals persist in seeking mental health services. The American Psychological Association (APA) and the World Professional Association for Transgender Health (WPATH) provide guidelines for culturally competent work with TGNC clients; however, research indicates a profound lack of TGNC-specific training and resources among mental health care providers. To address this gap, the present investigation utilized a mixed-method design to assess training experiences, understanding of terminology, and TGNC competence among mental health care providers at various training levels. Participants were current mental health clinicians across the United States. Implications for improving reported and demonstrated weaknesses are discussed.