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Changing landscape of healthcare for people with intellectual disability

Growing older with an intellectual disability
Older populations around the world are expanding, with projections from the World Health Organisation predicting that, by 2050, 22% of the world’s population will be over the age of 60 years. Similarly, the lifespan of those with intellectual disability is lengthening. This is a success story. However, to realise the potential of this older population, fundamental shifts are needed in how we think about old age, how we engage older people with an intellectual disability, and how we support those who may need extra care in order to age well. The World Health Organisation’s report, Ageing and Health, outlines an action framework to nurture healthy ageing. This concept of health is built upon the functional ability and intrinsic capacity of the person.
What this implies for people with an intellectual disability is a move away from the paternalistic view and approach to their support and care delivery. But rather, a focus on abilities and capabilities. This represents a substantial and essential mind shift in the approach to people with an intellectual disability, who, essentially, were always regarded as vulnerable. Focusing on their abilities and capabilities, assigning correct supports, and raising expectations contributes to improving their possibility to attain the goal of healthy ageing. First, let’s explore what intellectual disability means. The World Health Organisation defines intellectual disability as, a significant reduced ability to understand complex information, and to learn and apply new skills.
Intellectual disability originates before the age of 18 years, and causes limitations in many everyday functional and social skills. Intellectual disability has been classified through performance on IQ tests as mild, 69 to 55, moderate, 54 to 40, severe, 39 to 25, or profound, less than 25. These internationally-recognized terms– mild, moderate, severe, and profound intellectual disability– are used as descriptive terms only. They are used within the health care profession to confirm a common understanding of what is being discussed, explored, or studied, and are not for the purposes of labelling or describing people. Historically, people with intellectual disability were hidden away and, for the most part, lived in institutional settings.
Here they received their health and social care, and limited education, which marginalised and isolated people from mainstream society. At this time, people with intellectual disability did not live into old age. For example, the life expectancy of someone with Down syndrome in the 1930s was nine years. By 1983, this had risen to 25 years still remarkably different than the general population and remember, this was not too long ago. This low life expectancy was attributed to poor health care, higher rates of unmet and unrecognised health problems, and less access to health assessment and intervention. From the mid-1900s, legislation has been changing. Historically skewed laws, based on flawed perceptions of people with intellectual disability, have been replaced.
There has been a broad adoption of deinstitutionalisation, and integration into community. This stems from the pioneering work of Dr. Wolfensberger, the father of normalisation philosophy. A world-renowned advocate for people with intellectual disability, he coined the principle of normalisation in the early 1970s, which emphasises the promotion of opportunity, identifying value, and ensuring equality for people with intellectual disability. Thus, the focus was placed on the abilities and capabilities of people with intellectual disability. The premise being that all people are entitled to participate in the world equally. Overall, this philosophy influenced service values and practises to enable people with an intellectual disability to maximise their potential. People with intellectual disability are living much longer.
With advancement in health and social care, people are living well into their 50s, 60s, and beyond. However, with this advancement, people are at greater risk of experiencing old age conditions, such as osteoporosis, eye problems, hearing difficulties, respiratory conditions, and dementias. Despite the improved health care, research is showing that many people with intellectual disability are presenting with these old age conditions at a much younger age than the general population. And their life expectancy remains lower than the general population, with the average age of death 20 years earlier than most people. The most common cause of death is respiratory disease. It is also noted that adults with intellectual disability frequently experience premature death, many from avoidable causes.
In a large study in Australia, circulatory system deaths and infections were the two leading causes of potentially avoidable deaths, followed by cancer.
Our growing older population is a fact it is estimated that there are approximately 60 million people with intellectual disability worldwide. This represents one of the largest groups of people with lifelong disabilities. A group that requires support and care, and understanding, in order for them to age well. So with the extended lifespan, and legislation that encourages community dwelling for people with intellectual disability, comes greater and new challenges for health care professionals. Assessment measures and protocols need to be modified. Symptoms may present differently, or be read differently. Frequently, people with intellectual disability experience diagnostic overshadowing, and presenting symptoms are attributed to their disability. This results in conditions being missed, overlooked, and their needs going unmet.
Is is, therefore, essential that support is provided to enable people with intellectual disability to engage in health promotion and health assessment in order to monitor their health, and prevent unnecessary sickness and suffering. Coming up this week in the course, we will examine the health concerns for people with an intellectual disability, and how they are different than the broader older population. As we prepare to move forward, consider the reflection question posted in the step. And read or post a comment.

As we have seen in this video, people with intellectual disability are now living much longer due to improved health and social care. Greater community integration and a move away from institutionalization has changed the lives of people with intellectual disability.

However, this in turn has brought about new challenges for healthcare professionals including:

  • Addressing the healthcare needs of older adults with an intellectual disability.
  • Modification of healthcare assessments and measures for community dwelling adults with an intellectual disability.
  • Awareness of older age health conditions in people with an intellectual disability.

Thinking about this video:

  • In the comment section below, describe any changes you have seen in the care of people with intellectual disability over time in your country. For example, deinstitutionalization, or care in the community.
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Improving Health Assessments for People with an Intellectual Disability

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