TRAINING AND EDUCATING HEALTHCARE PROFESSIONALS ON INTELLECTUAL DISABILITES”

“People with disabilities do not want to be fixed, they need to be accepted for who they are”- Jordan Christian, Apraxia and Mental Health Advocate

Doctors and other health professionals who encounter disabled people in their professional practice should be aware not only of the causes, consequences, and treatment of disabling health conditions, but also of the incorrect assumptions about disability that result from stigmatised views about people with disabilities that are common within society.

Health professionals who work with disabled patients—for example, in rehabilitation medicine—generally have more progressive attitudes than their counterparts in other specialties. But junior doctors can encounter less progressive attitudes from colleagues and superiors, which may have a negative influence through what has been called the “hidden curriculum”.

Such day-to-day practical experiences may be more persuasive than what has been taught in medical school. Moreover, training in medicine and allied disciplines often fails to give adequate and balanced information about disability and how to relate to disabled people. Disabling conditions that cannot be cured or “normalised”, according to standard societal norms, can be especially challenging for trainee health professionals.

Evidence is mixed on the impact of education on medical students' attitudes towards disability. Professional training can lead to an erosion of empathy and growth in cynicism. Some studies have found that medical students have more negative attitudes to disability than the general norm, whereas others trace improvements during the course of medical education. Many courses of instruction medicalise disability, fail to take a holistic view of health, and ignore the human rights of people with disabilities.

As a result, most students are sympathetic and display concern but have negative views about the experience of living with disability. Some innovative work on disability has taken place in medical schools—see, for example, interventions from the Disability Partnership's Health Council—including the involvement of people with disabilities in instruction.

So what do students need to know about disability as a human rights issue? First, that people with disabilities are not inevitably in need of a “fix”, or dependent on others for care. As reinforced by the UN Convention on the Rights of Persons with Disabilities, they are citizens with human rights, including the right to health care; the right to rehabilitation; the right to live in the community; and the right to have a say in their own treatment.

Evidence shows that people with disabilities often rate their own quality of life much higher than others rate their quality of life: subjective satisfaction of disabled p eople is usually comparable to that of non-disabled people. Moreover, physicians and other health-care professionals need to accept that many people with disabilities, particularly where their health conditions are congenital or long term, do not necessarily perceive their disability as a problem or pathology.

Students in health care should realise that people with disabilities have the same health-care needs as everyone else. Especially as they age, disabled people need the same screening, preventive, and wellness-oriented care as do other people. Having a disability is not incompatible with being healthy and it should not be assumed that the issue for which consultation is being sought is related to disability.

Assumptions and negative attitudes about disability are often dangerous, and can be life threatening. For example, by assuming that people with disabilities are not sexually active, physicians may exclude them from health information or screening that non-disabled people receive as a matter of course—for example, for sexually transmitted diseases, cervical cancer, or HIV. Following Mencap's 2007 Death by Indifference report, Sir Jonathan Michael's 2008 Independent Inquiry into Access to Health Care for People with Learning Disabilities recommended compulsory training for health professionals about intellectual disabilities.

The Formal Investigation into Inequalities in Health launched by the Disability Rights Commission in the UK found that people with mental illness and people with intellectual impairments not only experienced more ill-health, but received a poorer service from health professionals and as a consequence they had higher rates of morbidity and mortality.

Health professionals need to understand that they should communicate directly with disabled people themselves about health matters, not only through carers, relatives, or other proxies. They should think through how to communicate with and relate to patients and clients who have intellectual impairment, sensory impairment, or difficulties in communication. Gaining experience in relating to people with mental health conditions is another, often neglected, priority.

Research shows that failure to communicate in appropriate formats leads to problems with compliance and attendance. For example, the UK Guide Dogs for The Blind Association found 95% of visually impaired people surveyed had never received health advice, letters, or prescriptions in an accessible format.

Similarly, the Royal National Institute for Deaf People found that one in four people who are deaf or have a hearing impairment had missed a medical appointment because the information was not presented in an easily understandable manner. Nearly a third of British Sign Language users did not know how to take medication for the same reasons. This failure to communicate effectively with disabled people not only wastes time and human resources, but potentially causes delays in diagnoses and treatment for these individuals.

Terminology and language is another sensitive issue. Patients vary, as does their radicalism. For example, some individuals prefer to be known as “disabled people”, signifying that they are disabled by society. Others prefer the term “people with disabilities”, highlighting the fact that they are people first.

However, nobody wants to be defined or labelled by their medical condition: “a paraplegic”, “the Asperger's in bed five”. Deaf people often resist being categorised as disabled entirely: sign language users see themselves as a cultural minority, and signify this by using the term Deaf, with a capital D. The message is to respect the wishes of the individual and to avoid making assumptions.

Education in disability should range from clinical information about specific conditions, practical issues about medical procedures, through to exploration of the human rights approach to disability. It is important for professionals to understand not just disease, but also the experience of living with disability. Improved survival rates, the shift from acute to chronic disease, and the ageing of the population mean that the number of disabled people in the population is likely to increase; thus, the need for effective education about their health-care needs is even more pressing.

Disabled people have great insight into their own condition and this can ideally make their relationships with health professionals more of a partnership, where each can learn from the other and where disabled people and their health-care choices are respected.