Caring for a vulnerable population

Although people in this minority group attend general practitioners frequently, they rarely see specialists, despite the fact that most of their disorders need specialist care. Blindness affects 4.4% (20 times the usual rate in Australia) and deafness affects 25% (compared with the average 2%) of people in this group, yet there are no special services for those who are blind or deaf. Although 9% have a psychiatric disability (compared with 2% of the general population), there are no special psychiatric services for them. Dental disease is the most frequent problem, affecting 86% of this group, but there are few special dental services.

With such a gross difference in health when compared with the general population, it would be very reasonable to ask whether there are any modifiable risk factors for these diseases. The answer is yes -- surveys show that, while people in the group smoke very little and drink less than the general population, this minority group is generally unfit, obese and often hypertensive. So at least with exercise and better nutrition, it is likely they could avoid developing some diseases.

Exercise opportunities improve the quality of life for people with an intellectual disability. (Reproduced with permission of the Stockton Centre, Newcastle, NSW.)

How can this apparently disgraceful situation exist? Is Australia a Third World country? Is this a neglected and persecuted ethnic minority? No, not at all -- but this minority group does have problems accessing health care when compared with their fellow citizens. They are poorer and nearly all are dependent on social security. They tend not to marry or have children, and live mainly in public housing. Educational levels are low and illiteracy is the rule rather than the exception. They do not drive cars and many do not have an occupation. They are less mobile; 10% either need assistance to walk or use a wheelchair. One of the greatest barriers to health care is that many cannot speak at all and only half can communicate in complete sentences. The non-ideal social conduct of some of the group is such that doctors are nervous about keeping them waiting and reluctant to expose them to their other patients for fear of losing customers. Another barrier is that members of this group usually have to negotiate health care through another person, which only works successfully if their agent is trained and empathic and does not underestimate their complaints.

Unfortunately, Australia has few doctors specially trained to understand this minority group. Australian doctors, although a decent lot, are (as a group) a bit impatient, are seldom able to fathom the language or unique culture of this group, and may not even recognise the names of most of the rare conditions from which they suffer. These conditions include fragile X syndrome, Rett syndrome and Angelman's syndrome. Further, because many of these patients take at least twice as long in consultation as the average patient, the more minority patients a doctor sees, the less the doctor's income.

By now, you will have realised that the minority population I am concerned about is composed of people with an intellectual disability, which is defined as an IQ below 70. The figures given above are from a population study of adults between the ages of 20 to 50 in the lower North Shore of Sydney.¹ All intellectually disabled adults living in a population of about 200 000 were identified and a random sample of 202 adults was examined. The lower North Shore is regarded as an affluent area of Sydney with good health services; it is thus reasonable to assume that conditions elsewhere in Sydney (and Australia) were either similar or worse. Studies on mortality and morbidity in people with intellectual disabilities in other parts of the world show similar results to the Sydney study.^2,3,4

How can we improve the medical care of people with intellectual disabilities? I believe it is simplistic to think we can solve the problem by changing medical undergraduate training alone. Doctors currently treat intellectually disabled patients fairly well, but they are mainly dealing with minor illnesses and injuries. Serious problems are rarely recognised because these patients are used to suffering and cannot articulate their symptoms, and thus seldom complain.

The woman with a slowly developing breast tumour, the man with anaemia as a result of a bleeding peptic ulcer, the child with Down's syndrome who is going deaf, the disturbed person having fluphenazine injections who is developing parkinsonism all depend on someone else to take them to a doctor. Young disabled people living at home are in less danger because there is a greater chance that their parents will badger the health system until something is done to help the child. But when a grown child leaves home, who will arrange medical care? Most Australian adults can be responsible for their own health, but we can rarely expect this of people with an intellectual disability. In the heyday of mental institutions, the medical superintendent was responsible for the health of people with an intellectual disability. Now, there is a question mark over just who is responsible. Local general practitioners, group home managers, area health service managers, heads of the Departments of Health and Community Services, perhaps even the Ministers, all disclaim responsibility. After all, the person is intellectually disabled, not sick.

People with disabilities need access to the health system (a system which is becoming exceedingly complex). Once within the system, they need interpreters and advocates, and more time and resources than the average patient. General practitioners should obtain additional remuneration for the extra time spent with each patient. The health system needs to follow guidelines for improving the medical care of people with intellectual disabilities (see Box). The medical care of people with an intellectual disability should be set up in the mainstream of hospital medicine, not in academic backwaters. We need additional information about special health risks among people with disabilities and management protocols for the commonest syndromes. Preventive health services and health promotion would save enough money to make other special services available, such as dental clinics, psychiatric and neurological services and eye clinics.

In the meantime, we are neglecting the health of people with developmental disabilities and, as a result, they are dying earlier and spending more time with doctors and more time in hospital than is necessary. If we valued the health of people with disabilities their lives would be longer and happier.

1. Beange H, McElduff A, Baker W. Medical disorders in adults with intellectual disability: a population study. Am J Ment Retard 1995; 99(7): 595-604.
2. Fryers T. Mortality and cause of death. In: The epidemiology of severe intellectual impairment. The dynamics of prevalence. London: Academic Press, 1984: 139-141.
3. Asberg KH. The need for medical care among mentally retarded adults. A five year follow up and comparison with a general population of the same age. Br J Ment Subnormality 1989; 35: 50-57.
4. Howells G. Are the medical needs of mentally handicapped adults being met? J R Coll Gen Pract 1986; 36: 449-453.

No reprints will be available.
Correspondence: Dr H P Beange, 23 Alpha Road, Willoughby, NSW 2068.

• Each patient with an intellectual disability should receive comprehensive and continuous health care, with primary care shared between clinical nurse specialists and general practitioners. They should have access to medical specialists and receive adequate attention in hospital.

• Clinical nurse specialists should be attached to the local group homes that are replacing institutional care. (Group homes usually house four people and are staffed either part-time or full-time.) These nurses would be responsible for health maintenance, preventive health care, arranging vaccinations and checking drugs. They would also make appointments for patients with acute and chronic health problems and maintain the medical records.

• General practitioners should be encouraged to review their disabled patients' drugs every three months and perform annual physical examinations. Full medical and genetic histories should be made available to these doctors.

• Health promotion clinics for people with disabilities should be established at teaching hospitals to provide back-up for the general practitioners in the area. These clinics should have formal links with genetic, paediatric and psychiatric departments and provide access to specialists who have expertise and empathy with disabled people. Clinics should offer medical, dietary and exercise advice, and opportunities for exercise after fitness testing. Protocols for dealing with particular syndromes should be developed (e.g., regular hearing and thyroid function tests for people with Down's syndrome, and regular surveillance for hip dislocation and urinary tract infections in people with cerebral palsy).

• All residential staff should be trained in basic health care, first aid, pharmaceutical treatment and nutrition. Staff should know how to treat fits and choking episodes.

• Courses in developmental disability medicine for medical students and interested family practitioners should be provided, utilising the skills of doctors who have experience in the field.

• A medical specialty in developmental disability medicine should be developed, so that these specialists could act as generalists in the same way as geriatricians care for the elderly.