The health and wellbeing of people with intellectual disabilities is receiving increased attention of late, and not before time. Despite long years of being cared for by doctors and nurses, many have not received the care and attention we now recognise they need if they become physically ill. In Britain this has been brought home through a recent inquiry into the untimely deaths of people with intellectual disabilities in general hospitals. Equally some can have unrecognised mental health problems and greater investment in specialist treatment services has been called for.
But this brings to mind the old adage of bolting stable doors when horses have bolted! We can spend money on treating illnesses, but do little to ensure people are in better health. Let me explain. Over sixty years ago, the World Health Organisation defined health as ‘a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity’. Although it is probably an oversimplification, we can look at health and illness as two separate dimensions. We can then divide people into four groups.
- For the general population, especially younger people, most enjoy good health and the majority are free of illness at any point in time.
- However from time-to-time they will experience illnesses but their underlying health is good. The treatments for physical or emotional ailments will restore them to good health.
- Those in the third group are not ill as such but they are in poor health. This may show itself particularly in their social and emotional wellbeing, but also in a lack of physical robustness. The term ‘languishing’ has been applied to them. In an American study, young people in this group were six times more likely that those in group 1 to develop a mental illness.
- Finally there is a group whose overall health is poor and they have ongoing or repeated illnesses. But note: even if their illnesses are treated this may not result in better health—they may simply rejoin the languishers! As we noted above, their chances of becoming ill again remain high.
This framework has particular applicability with people who have an intellectual disability. Research in Ireland and elsewhere has demonstrated the poorer quality of life that they lead, especially if they live in campus-style settings. Self-advocates have repeatedly argued their desire for increased opportunities to work, socialise and have friends, as articles in Frontline have reported over the years.
The word ‘languishing’ well describes their plight. But the point is that the money spent on curing their illnesses—important as that is—is no guarantee that their overall health will get any better. Hence they remain at increased risk of becoming ill again: resulting in what has been called the ‘revolving door’ syndrome of readmissions to hospital, especially for mental health problems. One important lesson flows from this analysis. Shifting people up from ‘poor’ to ‘good’ health is not the responsibility of our ironically named ‘health services’, which incidentally would be more accurately described as ‘illness’ services. They can be expected to shift people from right to left in terms of the above figure, but the creation of better health must be seen as the responsibility of all our support services for people with an intellectual disability. Is this the case? Here are some questions you might want to reflect on.
- Does health promotion feature in the induction given to new support staff?
- Are training courses provided for support staff and family carers on promoting healthy lifestyles? Are similar courses available to children and adults in schools and training centres? Are support staff encouraged to have healthy lifestyles?
- Do health-related outcomes, as per the World Health Organisation’s definition, always feature in person-centred planning?
If the answer is ‘no’ or ‘sometimes’ to any of these questions, it may explain why so many people with an intellectual disability are unhealthy even when they are not ill. Recruiting and training more doctors and nurses is not the solution. Fundamentally it means changing the mindset we have about health and how we can promote better health for people with an intellectual disability. Two truisms to remember:
- Illness is NOT an inevitable consequence of a disability.
- Good health is the best protection against future illness. Adelle Davis put it this way: ‘Every day you do one of two things: build health or produce disease in yourself-” And we might add … and in the people that we care for.