“What do you expect? She is mentally retarded!”: On Meeting the Health Challenges of Individuals with Intellectual Disability

Abstract

On balance, the life expectancy of people with intellectual disability is significantly less than it is for the general population. For the most part, individuals with intellectual disability die from the same diseases as "the rest of us": heart disease, stroke and cancer. But for the most part, they die earlier from those same diseases, not because of the special nature of intellectual disability, but because they are less likely to be diagnosed and treated in time, and because they are less likely to be exposed to health promotion and disease prevention information, services and supports. The literature on the subject is clear: overall, the health needs of people with intellectual disability are not being effectively met. In this article, the author discusses the reasons for this state of affairs and suggests ways to correct the condition. INTRODUCTION: LEARNING LESSONS THE HARD WAY A woman with severe intellectual disability and no comprehensible verbal communication was taken to a community health clinic. Support staff were concerned about her disruptive behaviour. They didn’t know how to deal with the behaviour and were worried that it might be an indication of more serious problems. On cursory examination, the attending physician was quick to attribute the behaviour to the nature of the woman’s disability. With some impatience he declared: “What do you expect? She’s mentally retarded!” Unsatisfied with the explanation, support staff insisted that the woman was usually mild mannered and that the disruptive behaviour was out of character. Subsequent investigation found that the woman had a massive gallstone. In this case, a fundamental failure was to only see the patient’s behaviour as representative of a population for whom the physician maintained certain preconceptions. This limited perspective prevented the physician from viewing the patient’s behaviour as descriptive and symptomatic communication. The patient’s behaviour was dismissed as largely inconsequential, and it was only by fortuitous circumstance (determined support staff) that the young woman’s condition was eventually uncovered. Until prodded, the physician was prepared to bypass thorough examination and substitute presumption for diagnosis. THE HEALTH CARE DISPARITY Though the lifespan of individuals with intellectual disability has been steadily increasing, life expectancy is still about 10 years less than for the general population. While aetiology or syndrome-specific factors account for a small portion of the difference, evidence shows that on balance, people with intellectual disability have a high level of undiagnosed and unmanaged health problems. Heart disease, hypothyroidism and osteoporosis are conspicuous amongst those problems. What's more, the research indicates that individuals with intellectual disability are four times more likely than other members of the general population to die prematurely from preventable causes. This suggests that although effective health promotion, illness mitigation, and disease prevention strategies exist, not everyone benefits equally from these interventions, and that individuals with intellectual disability are especially vulnerable. Inasmuch as intellectual disability is a clear, measurable determinant that places individuals in a position of health care disadvantage, the World Health Organization has charged that people with intellectual disability have been, and continue to be, a devalued and often neglected population. REASONS FOR THE DISPARITY Most health care practitioners will, from time to time, work with patients who have an intellectual disability. It has been “What do you expect? She is mentally retarded!”: On Meeting the Health Challenges of Individuals with Intellectual Disability 2 of 6 estimated that a General Practitioner with 1,500 patients, for instance, will have 20-30 patients with mild intellectual disability, and 4-6 patients with severe intellectual disability In many cases, though, General Practitioners and other health care professionals are poorly prepared to meet the often complicated health needs of their patients with intellectual disability. In one study, eighty-one percent of medical school students said that they did not receive any clinical experience with individuals with intellectual disability, while sixty-six percent stated that they did not receive sufficient classroom instruction. In a survey of 500 nurses in New Jersey, most nurses indicated that they received little or no information about intellectual disability and other developmental disabilities during their nursing education. In a study of Canadian-educated psychiatrists, respondents reported receiving only minimal education about intellectual disability, and many admitted that they had little or no interest in working with patients who have an intellectual disability (work in the field of intellectual disability has been referred to as the “Cinderella of psychiatry”). Similar results were found in a survey of Australian psychiatrists. When they do work with patients with intellectual disability, absence of adequate instruction and supervised clinical experience during pre-registration education has led many health care practitioners to feel uncomfortable and ineffectual. In some instances, the gap in education has permitted maintenance of misconceptions and prejudicial attitudes that have contributed to substandard health care. The tendency toward diagnostic overshadowing, for example, or the practice of attributing all behaviours and symptoms only to intellectual disability, i.e. “This is a ‘mental retardation’ problem”, or, “That’s just the way they are”, has meant that serious conditions have been ignored and untreated. As evidence, Reiss and colleagues found that clinicians in their study were more likely to assign a diagnosis of mental health disorder to a symptomatic individual without intellectual disability, than to an individual with intellectual disability who presented with the same description of symptoms. Despite abundant evidence of substantial health needs that exceed those of the general population, it is clear that impediments to appropriate health care continue to confront individuals with intellectual disability. Educational deficiencies and unsupported prejudices are prominent in maintaining those impediments. To illustrate further, parents have reported that it has not been unusual for their sons or daughters to be disallowed recipient status for organ transplant surgery, with disability given as the reason for exclusion: “I was told by her cardiologist that she is not eligible for a transplant because of her Down syndrome.” “We were told that if he was ‘normal’ like us he would be a great candidate for a corneal