Dr Jane Tracy, Centre for Developmental Disability Health, Victoria, Australia, says that many people with intellectual disabilities often encounter barriers to accessing healthcare services
Being healthy is more than not being sick. Being healthy is about feeling well and comfortable, safe and secure, to be able to connect with other people and join in the life of your community. Being healthy is about feeling good physically and mentally.
For people with intellectual and other disabilities it is very important to be and stay as healthy as possible, as being unwell makes it harder to do things for yourself, and to join in education, work, recreation and social activities with family and friends. Many people with intellectual disabilities experience poor health. Some of the health issues relate to the disability, but many are the same as those experienced by the general population. Unfortunately many people with intellectual disabilities also often encounter barriers to accessing healthcare services. Part of the problem is that many doctors have little or no training in disability—and many disability support workers have little or no training in health. This results in gaps in understanding and responsibility that contribute to people with intellectual disabilities not getting the healthcare they need.
There is a need for training of support workers to understand the health implications of disability. Health conditions may, for instance, present as a change in function or behaviour, particularly when people are not able to communicate how they feel with words. That person depends on the support worker to notice changes—think about whether they could be due to physical or mental health issues, arrange a timely appointment with the relevant health professional, describe the changes they have noticed to that health professional—and then follow up on management recommendations.
Likewise there is a need for education of health professionals to understand the implications of health for disability and disability for health. Health professionals must understand the impact of cognitive and communication impairments on the ways people present with various health conditions. Many disabilities are associated with a higher risk of some health conditions and it is important to know of these in order to be able to make the diagnosis early. For instance, people with cerebral palsy are at higher risk of developing muscle spasm, musculoskeletal pain, gastro-oesophageal reflux, dental disease, trouble swallowing and constipation. People with Down Syndrome are at high risk of being born with abnormalities of their heart, having vision or hearing impairments, developing an under-functioning thyroid, and experiencing depression and/or anxiety in adulthood and the symptoms of Alzheimer’s dementia later in life. The doctor should be aware of the common associations, and know where to find information about rare conditions.
The other important factor in assisting support staff and health professionals to work effectively together is the development of a mutual understanding and respect about each person’s area of expertise and each person’s perspective and priorities. Disability staff have expertise in supporting people with disabilities and their focus is primarily on engagement and social inclusion. Health professionals have expertise in healthcare, and their focus is primarily on health status and function. Both disability and health professionals share their goal of optimising health, function and wellbeing to optimise quality of life.
Health promotion and disease prevention are crucial aspects of care for everyone in the community, including people with intellectual disabilities. Support workers and health professionals must work together to ensure people eat a healthy diet, engage in regular exercise, maintain a healthy weight, avoid smoking and illegal drugs, drink alcohol in moderation, attend to their sexual health and have information about safe sexual practices, ensure immunisations are up-to-date, access cancer screening programs, remain socially engaged with family and community and see their doctor for an annual check.
Medical students, and indeed all health professionals, should have education about the implications of disability for physical and mental health during their training. This is the only way to ensure all graduates have a basic level of understanding of the interaction of disability and health and the consequent repercussions for their clinical practice.
Likewise, all disability support workers should have a basic level of training in relation to health. This would enable them to more readily identify the functional or behavioural changes that may indicate a deterioration of physical or mental health.
Staying healthy is about teamwork. Teamwork between the person, their family and support staff and their health professionals. When someone is feeling unwell, or is in pain or discomfort, everyone has to work together to find out what’s wrong and then do whatever is required to help the person feel as well as they can again.
Staying healthy is a job for life. A good diet, regular exercise, maintaining a healthy weight, getting enough rest, getting checkups with the doctor and dentist, keeping oneself and one’s house clean, working, learning, doing things for other people, spending time with friends and family—these are all important aspects of health maintenance.
Damien, aged 25, was not feeling good. He wasn’t feeling sick exactly, but he didn’t feel like going to work, or to the movies with his friends. He didn’t feel like doing anything. The staff who supported him, his family and his housemates all tried to get him to join in the things they were doing—but he didn’t want to. He just wanted everyone to leave him alone.
Tom, Damien’s key worker, went with Damien to the doctor. He told the doctor that he was worried about Damien because he didn’t want to do the things he used to enjoy, was sleeping a lot, was putting on weight and always seemed to be cold.
The doctor had seen Damien many times before and knew that he was usually someone who liked being out and about with his friends, loved his work and spending time with his family. Something was definitely wrong.
Damien usually like chatting with his doctor and showing her photos of what he had been doing. This time though, Damien couldn’t be bothered talking much – he felt tired and just wanted to go to sleep. He let the doctor take his blood pressure, look in his ears, and listen to his chest and feel his belly.
The doctor said she wanted Damien to have a blood test. Damien didn’t like blood tests, but the doctor and Tom both explained that it was the only way to find out what was wrong so they could try and help him. Damien wanted to feel better, so he decided to have the test. Tom came with him, which made him feel better about having it.
Damien and Tom went back to the doctor a few days later. The doctor said his thyroid wasn’t working properly anymore and that Damien would need to take some pills, and that he would then feel much better in time for his 26th birthday the following month.
Damien had a party for his birthday and he felt great. He didn’t feel tired anymore, his skin wasn’t so dry and itchy and he had lost some weight. His friends and housemates celebrated with him. They played the music they liked and had a barbeque outside. It was a great night.