Dr Eilish Burke, Ussher Assistant Professor in Ageing and Intellectual Disability, Associate Director of the Trinity Centre for Ageing and Intellectual Disability, Trinity College Dublin and Lead Educator on Improving Health Assessments for People with an Intellectual Disability’ on the FutureLearn social learning platform, discusses why it’s important to improve health assessments for people with an intellectual disability.
Why is recognising the need to improve the health experience of people with intellectual disability important?
The health experience of people with an intellectual disability is different than that of their non-disabled peers (Burke et al. 2014, Burke et al. 2017). It has been reported that people with an intellectual disabilities are two and half times more likely to present with health problems than those in the general population of the same age and gender (Lantman-De et al 2000). A greater variety of health conditions are also reported with higher prevalence rates of these conditions, for example central nervous system compromise, associated with some intellectual disabilities. These increase the likelihood of conditions such as epilepsy or cerebral palsy, and overall contribute to increased health risks such as seizure activity, mobility challenges, sensory impairment, and communication challenges.
The inability of people to express what they are experiencing, or by the very nature of their intellectual disability, the inability to recognise the symptoms as symptoms, can contribute to conditions being overlooked by doctor’s during health checks. Other challenges that are frequently reported include being allocated insufficient time for an appointment, an inaccessible environment, and poor or negative attitudes of healthcare professionals towards people with intellectual disabilities.
Multimorbidity, the presence of 2 or more health conditions, is also common, in fact one study, McCarron et al. 2013, identified that multimorbidity was higher in a younger age group of people with intellectual disability (40-49 years) than those over the age of 65 years in the general population. Heart disease, hypertension and stroke are more common among the general population. However, the most prevalent health conditions among people with an intellectual disability differ. They experience higher rates of eye disease, neurological conditions or skeletal conditions. Subsequently these conditions go under investigated and people’s needs go unmet.
To prevent additional disability because of these challenges, there is a need for healthcare professionals to engage and support people with intellectual disability appropriately in health assessment, to recognise challenges that exist and address these challenges.
How can we go about improving health assessments?
There are solutions to these challenges and they don’t need a huge amount of funding or change. With some effort and creative thought, change can be implemented. Communication can be improved by introducing plain language supported by picture explanations in the form of easy to read material explaining. Extra time can be allotted to an appointment with careful pre-planning, healthcare professionals can take responsibility to update their skills in communication, and specific standards can be introduced to reflect and adopt these changes. This would ensure that all allied staff, as well as the healthcare professional, deliver best practice and excellent care.
There are lots of resources available to support healthcare professionals in their practice to achieve these changes. They will not only benefit people with an intellectual disability but all those who access the services. Therefore by making these reasonable adjustments, healthcare professional will be contributing to overcoming the health disparities and inequalities that exist for people with an intellectual disability, as well as providing an accessible service for all consumers of healthcare.
Considerations when supporting or assisting a person with an intellectual disability in a health assessment
Examine your practice from all aspects, the environment, the information you provide to your customer, regardless of their abilities, your own practice and attitude. Question whether the service you deliver meet the needs of all citizens. Supporting the most vulnerable of our society can only benefit everyone, therefore consider
- What do you know about intellectual disability, what can you instigate to build your knowledge and understanding especially with regards to their health?
- Are there specific health conditions you need to consider when supporting a person with an intellectual disability?
- What additional information do you need before meeting the person with an intellectual disability, such as their communication style or supports needed, and where can you get this information - is it their carer or family member?
- Can all who access your service understand the information you send them or do you need to put in another step like a phone call or an easy-read document?
- Is the building accessible or do you need to put up signs, ramps or easy open door access?
These are just some of the questions that you can consider to equip you with a strong repertoire to ensure the health assessment experience is positive for everyone.
Embrace Reasonable Adjustment
To move toward change and reasonable adjustment in your practice, the following are some tips you could adopt to support people with an intellectual disability engage in their health.
- Instigate a standard for an annual health check for all those with an intellectual disability in your caseload. That way you are proactive in identifying health needs as they arise.
- Develop a health check passport for people with an intellectual disability. The person will then have an individual easy read passport that will hold their key information to hand. Therefore, when they attend another clinic or hospital appointment their vital information is ready to be conveyed, and also all information from that appointment can be captured for future reference.
- Identify the experts, establish who your local expert is, are there specialist trained in the intellectual disability field, is there an intellectual disability liaison available or who are your local intellectual disability organisations that you could consult with?
- Promote education among your colleagues as through education change can occur.
We discuss all of these points in Trinity College Dublin’s free online course: ‘Improving health assessments for people with an intellectual disability’ on the FutureLearn social learning platform, developed especially for healthcare professionals, carer’s and families who support people with an intellectual disability with their health.