Maurice Feldman, Frances Owen, Dorothy Griffiths, Donato Tarulli, Carol Sales, Christine Tardif, & Glenys McQueen Fuentes, Brock University, St. Catharines
Leslie Atkinson, University of Toronto
Paul Fedoroff, University of Ottawa
Yona Lunsky, University of Toronto
(3R's Niagara Community University Research Alliance & 3R's Canadian Institutes of Health Researchers )
This paper is dedicated to John Jacobson. His life-long commitment to persons with intellectual disabilities and their right to effective and evidence-based treatment and supports served as an inspiration for the field to continue research and training in the area of health and mental health advocacy.
People with intellectual disabilities do not have equitable access and "face enormous obstacles" to health care (U.S. Department of Health and Human Services, 2002, p.5). The Report of the Surgeon General's Conference on Health Disparities and Mental Retardation goes on to call for significant alterations in the health care system to better accommodate the health and mental health needs of people with intellectual disabilities by improving knowledge, funding, training of practitioners, health and mental health promotion and the quality of health care for this populaton. Similar proposals have been forthcoming in the UK (Department of Health, 2001). While these proposals are notable, there has thus far been little focus on empowering consumers with intellectual disabilities in their own health care. The Canadian situation is much the same.
Issues in Health and Mental Health Services for Persons with Intellectual Disabilities
Persons with intellectual disabilities present special challenges for the health care system. Compared to typically developing peers, persons who have intellectual disabilities are at increased risk for health problems (U.S. Department of Health and Human Services, 2002). Indeed, international research reveals pervasive concerns regarding the general health and health care of persons with intellectual disabilities, including a lack of recognition of common and specific health needs of this population, and little focus on health promotion (Lennox & Kerr, 1997).
Despite evidence for the increased medical care needs of persons with intellectual disabilities, many physicians feel inadequately prepared to address the concerns of this population of patients (Phillips, Morrison, & Davis, 2004). The use of regular Comprehensive Health Assessments has certainly helped to overcome some of the communication difficulties that physicians have identified as barriers to effective health care provision for their patients with intellectual disabilities (Lennox, Green, Diggens, & Ugoni, 2001). However, this process is not universally embraced (Dovey & Webb, 2000). While some of the responsibility for gaps in health care provision for people with intellectual disabilities may lie within the health care system itself, it may be argued that preparing people with intellectual disabilities to take a more active role in their own health care may further facilitate this process of systemic change and improve the physical and mental health of persons with intellectual disabilities.
Sutherland, Couch, and Iacono (2002) suggest that the least researched area in health issues for adults with intellectual disabilities is the issue of choice. As with other areas of human rights for persons who have intellectual disabilities, a controversy rages between surrogate decision-making (in their best interests) and choice and self-determination (to the best of an individual's abilities). Those who advocate for the right of individuals to make their own choices argue in particular that health promotion could be strengthened by the removal of systemic barriers that prevent adults who have an intellectual disability from engaging in the active choice of healthy lifestyle options (Messant, Cooke, & Long, 1999).
The issue of self-advocacy and respect for the rights of individuals who have intellectual disabilities is far from simple, especially as it pertains to physical and mental health care. For instance, caregivers may find themselves torn between the need to provide good care (which may not always be consistent with the health-care patient's wishes) and the need to respect individual rights (van Hooren, Widdershoven, van den Borne, & Curfs, 2002). However, as van Hooren et al. (2002) point out, the distinction between paternalistic intervention on the one hand and autonomy on the other may reflect a false and somewhat simplistic dichotomy, one that fails adequately to capture the complex forms that the process of care can take. In keeping with the feminist notion of relational autonomy, van Hooren et al. emphasize positive freedom (freedom to) rather than negative freedom (freedom from). From this perspective, autonomy is not synonymous with self-determination and the unencumbered freedom to choose, but rather is a matter of self-realization. The individual who has an intellectual disability develops this sense of self-realization not in opposition to (or freedom from) others but precisely in the context of social relationships, that is to say, jointly, collaboratively, with others.
Gordon DuVal, a bioethicist, notes that:
"Ethical dilemmas&ldots; often arise when these two principles, respect for
self-determination and protection of vulnerable persons, come into conflict.
Neither value is inherently more important and the particular context and
narrative of the situation is always essential to determining a proper balance
between these values. Nevertheless, there are other ethical considerations that can be helpful in striking that balance." (DuVal, 2002, pp. 446-447).
It is this relational perspective that forms the foundation of the 3Rs: Rights, Respect and Responsibility program (Griffiths et al., 2003; Owen et al., 2003; Stoner, Gosse, Vyrostko, Owen, Griffiths, & Sales, 2002; Stoner, Gosse, Vyrostko, Griffiths, Owen, & Sales, 2002).The 3Rs program focuses on teaching persons who have intellectual disabilities to recognize and exercise their rights in the context of responsibility and respect for both themselves and others. In this manner the 3Rs training highlights the inescapable intersection of rights, respect and responsibility, and addresses socially-embedded and legitimate concerns. Here, the exercise of one's human rights is seen as a deliberative process that always involves an engagement with and response to the concrete particularities of individual situations. To proceed otherwise-say, by providing rights training alone, without regard for the dimensions of respect and responsibility-would be to violate the fundamental premise of the relational perspective, and ultimately, we believe, to place people with intellectual disabilities in the position of making potentially unwise and unhealthy decisions.
Training Complex Skills
To date, much research has focused on teaching a variety of skills to individuals with intellectual disabilities using both conventional educational and behavioral principles such as modeling, prompting, pictorial and audio materials, positive reinforcement, role playing, and drama, as well as more innovative technologies such as multimedia or interactive technology (Boal,1992; Bolton, 1979; Feldman, 2004; Feldman & Case, 1997; Herman & Smith, 1988; Langone, Clees, Rieber, & Matzko, 2003; Lunsky, Straiko, & Armstrong, 2003; McClintock, 1984; Wagner, 1976). Relatively fewer studies, however, have evaluated both the training and generalization of more complex conceptual skills, such as self-advocacy, in persons who have intellectual disabilities; and only a few published refereed studies have focused on human rights training in adults with disabilities (Griffiths et al., 2003; Owen et al., 2003; Sievert, Cuvo, & Davis, 1988). Indeed, to our knowledge, no evidence-based program exists to train individuals with mild to moderate intellectual disabilities about their rights and responsibilities specifically in health and mental health self-advocacy.
Existing research on concrete and functional skill training for persons who have intellectual disabilities indicates that while generalization to non-training settings is crucial, it is often difficult to obtain. This body of research also suggests that successful in vivo generalization is more likely to occur with training that includes sufficient and relevant exemplars in the natural environment (or closely simulated contrived situations), along with caregiver prompting and reinforcing of appropriate responses (e.g., Griffiths, Feldman & Tough, 1997). These principles of successful generalization provide a useful groundwork for the exploration of the teaching of more complex skills, such as health and mental health self-advocacy.
Systemic Strategies to Promote Generalization and Maintenance
In keeping with the view that individual rights are relational phenomena that emerge in and through the supportive scaffolding provided by others, attempts at teaching rights to persons who have intellectual disabilities are more successful if caregivers also are trained to support the newly learned skills. Extant research certainly points up the usefulness of involving caregivers in the training process. The literature shows, more specifically, that effective staff training techniques have been identified (Feldman & Dalrymple, 1984); that general case training promotes generalization of staff members' teaching skills (Ducharme & Feldman, 1992); that staff skills (and client performance) are maintained with supervisor feedback and staff reinforcement (Feldman & Dalrymple, 1984; Matson, Bamburg, Smalls, & Smiroldo, 1997); and that cascade (pyramid) training (DePoy, Burke, & Sherwen, 1992; Ducharme, Williams, Cummings, Murray, & Spencer, 2001; Shore, Iawata, Vollmer, Lermen, & Zarcone, 1995) promotes cost-effective program maintenance.
In the case of rights training, and health rights and self-advocacy in particular, training in the absence of this systemic commitment to training health care providers, caregivers and support staff can not only be ineffective but can also be potentially abusive. As the 3Rs approach (Owen et al., 2003) to rights awareness training is firmly rooted in the systemic tradition, no training is provided to individuals with intellectual disabilities until the care-providers who support them have been trained. In turn, the service agencies are engaged in setting up a work environment (organizational policies and procedures) that encourages staff to acknowledge and support client human rights, choice and empowerment. Without this systemic commitment to supporting the application of the rights training, individuals could find themselves attempting to apply material from their rights training program in a less than responsive and supportive environment. In its worst form, this could lead to an individual's attempts at appropriate self-advocacy being actively thwarted.
The Need for Training Generalized Health Care Self-Advocacy Skills in Persons with Intellectual Disabilities
If individuals who have intellectual disabilities are to enjoy their rights and liberties in the health and mental health field, self-advocacy must continue to receive systemic attention through well-developed and evaluated programs. Access issues will not be fully addressed until persons with intellectual disabilities learn how to clearly articulate and communicate their health concerns, question and choose treatments, provide informed consent and engage in health promotion activities. They need to learn how to collaborate effectively in their own health care by participating in ongoing education provided by trained caregivers who are proficient in the use of evidence-based programs.
An effective health self-advocacy training program requires methodology and content based on the existing literature and on areas of concern identified by those in the medical community who are serving persons with intellectual disabilities. A major focus of the program should be the development of effective communication skills, with a focus on (a) expressing health concerns to caregivers and health professionals, (b) requesting that caregivers and health care professionals take appropriate action to resolve health concerns, (c) articulating medication, diet and exercise routines, (d) answering follow-up questions related to health concerns, and (e) asking questions about their health care, treatments and medications as needed. The program would also require three primary foci: health concerns at home and work, physician and hospital visits, and pharmacy transactions.
Training Methods. A general case approach has been used in the literature to train generalized skills in persons with intellectual disabilities (Horner & Albin, 1988) and their staff (Ducharme & Feldman, 1992). Training strategies include multiple exemplars for each category of rights, role-play scenarios, drama-in-education approaches (Boal, 1992; Herman & Smith, 1988; Wagner, 1976, Warren, 1993), interactive video CD (Owen et al., 2004), game-based activities with or without in vivo prompting, and reinforcement (Griffiths et al., 1997). These training strategies, in isolation or combined, would provide evidence-based procedures for teaching about health and mental health self advocacy.
Health-care Providers, Caregiver Staff and Family Support. Health care providers, staff and family members who support persons who have intellectual disabilities also require orientation to health self-advocacy so that they can support the individuals with intellectual disabilities in the application of their newly acquired skills. A similar model of parallel training is being employed in the 3Rs training program to develop a whole system approach to advocacy while maximizing support of in vivo skills application (Griffiths et al., 1997; Owen et al., 2003). Managers and supervisors in agencies also require orientation to the issues in health and mental health self-advocacy to ensure that they are prepared to provide the kind of policy and procedural support that are needed to maintain the skills being taught to the persons who are supported by their organizations. As Jones et al. (1999) noted in their study of the impact of staff training in active support, training must be allied with service management if it is to withstand the impact of personnel changes.
Duality of Community Benefit from Health and Mental Health Self-Advocacy
While the focus of the training program is on people who have intellectual disabilities and their caregivers, the results of this type of training will impact the broader health-care community by exposing health-care providers to individuals who have been trained in human rights and in ways that they can effectively communicate these rights. Health-care patients who have intellectual disabilities will thereby present as more informed, and will more readily question both their health-care providers and the overall health care processes. They will, in short, be ready to participate more fully in the discussion and deliberation surrounding the health care they receive, and as such be more effective consumers of health and mental health services. Moreover, as self-advocates, people who have intellectual disabilities may be in the best position to raise awareness of the need for service change in the health and mental health fields.
This paper has presented an historical and research-based analysis of the need for and best practices undertaken to develop health and mental health self-advocacy for persons with intellectual disabilities. Although there appears to be sufficient value in equipping persons with intellectual disabilities to be more active in their health and mental health care, to date the literature and research have been relatively silent on both training approaches and the evidence-based effectiveness of such programs. Indeed, the effectiveness of any program to teach human rights related to health self-advocacy skills to persons with intellectual disabilities is yet to be determined. With the support of the Canadian Institutes of Health Research, we have started such an evaluation.
In addition to training individuals with intellectual disabilities, community-wide application of human rights training in health self-advocacy requires a reorientation of caregivers and the agencies in which people are supported. An historical shift from decision-making by others to self-advocacy and self-realization in the context of social relationships requires both educational and policy changes. The promotion and development of more collaborative relationships between health-care providers and persons with intellectual disabilities are needed (Rush & Frances, 2000).
However, these changes are predicated on the development of evidence-based training that demonstrates the following outcomes:
(i)Persons who have intellectual disabilities, who receive health and mental health self-advocacy training, express greater self-efficacy in health self- advocacy abilities and significant improvement in the number and quality of correct health self-advocacy responses that generalize from training to real-life situations;
(ii)Caregivers report that trained persons who have intellectual disabilities are making a larger number of correct health self-advocacy responses in real-life situations;
(iii)Persons who have received such training are able to access and benefit from improvement in their health and mental health care; and
IS THIS NUMBER IV? Physicians and other health professionals report that the trained group demonstrates significantly improved communication skills during a health visit with the result that health professionals are better able to serve their health and mental health care needs.
The interaction of persons with intellectual disabilities and the health and mental health sector is complex and embedded in a history of other-directed care and the lack of opportunity for self-advocacy. Although the above recommendations address only one piece of that complex interaction, there appears to be value in expanding the emerging practice of teaching self-advocacy and rights to include a focus on health and mental health issues combined with training in communication skills for those with intellectual disabilities. However, emerging practice should adopt a systemic approach, involving the training of health-care providers and other caregivers, and should be empirically-based if change is to be both real and enduring.
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Additional Suggested Reading
Sales, C. A., Owen, F. A., & Lesperance, M. A. (2000). Experiential exercises in human resource management. Scarborough, Ontario, Canada: Prentice Hall Canada, Inc.
The Council (2000). Enhancing the rights of people with disabilities. Toronto, Ontario, Canada: Accreditation Ontario.
United Nations (1975). Declaration on the rights of disabled persons, General Assembly Resolution 3447 (XXX). New York: Author.
For further information: firstname.lastname@example.org.