Good health is important to everyone. Optimal health is central to being able to enjoy the best possible quality of life. No one can fully engage with, participate in, and contribute to their communities while in discomfort, pain, or distress in physical, oral, or mental health. For people with intellectual disabilities, however, sub-optimal health frequently occurs because of a combination of factors relating to their specific disabilities and external factors, such as where they live, who supports them, and challenges faced in accessing health systems.

This chapter provides an overview of the implications of poor health and why poor health is often experienced by people with intellectual disabilities. It then focuses on the role of disability support services and individual support staff in contributing to the optimal health of people with intellectual disabilities through the support provided to individuals and in interactions with the health systems. In this chapter, health is discussed in terms of physical, oral, and mental health as a whole because of the strong connections between them.

Implications of Poor Health

The implications of poor physical, oral, and mental health are far-reaching. Of greatest significance is reduced lifespan. People with intellectual disabilities in Australia die, on average, 27 years earlier than their peers in the general population and often from conditions that could be prevented if identified and treated early. They experience chronic ill-health resulting in pain, discomfort, reduced function, and hospitalisation and impaired quality of life at much higher rates than people without lifelong disability (Salomon & Trollor, 2019). People with intellectual disabilities also have high rates of dental or oral disease, causing pain and discomfort, difficulty chewing, bad breath, poor self-esteem, and chronic ill-health (Fisher, 2012). Similarly, rates of mental health problems in people with intellectual disabilities can far exceed those found in the general population (Whittle et al., 2019).

Distress arising from physical, oral, and/or mental ill-health is often made worse when the underlying cause or causes are missed. As an example, the onset or worsening of challenging behaviours (or behaviours of concern) can be expressions of physical, oral, or mental pain or distress, but often is met with behavioural strategies or restrictive interventions, such as medications (Henderson et al., 2020). This response means that the underlying problem goes unrecognised and untreated, with the potential for it to worsen. Another possibility is that the wrong treatments are prescribed, which can create new challenges, such as dealing with the effects of multiple medications as new ones are prescribed to treat the side effects of each added medication (e.g. constipation).

Disadvantages Experienced by People with Intellectual Disabilities

There are multiple reasons for the poor health of people with intellectual disabilities, such that they experience health disadvantages in comparison with the general population. Contributors to poor health and health outcomes can be thought of in terms of risks associated with the person’s disabilities (i.e. intrinsic to the individual) and those associated with factors outside the person (i.e. extrinsic to the individual). An example of intrinsic contributions to health outcomes are those related to specific syndromes and having a cognitive disability; examples of extrinsic factors include where people live and issues with health systems.

Intrinsic Contributors to Poor Health

Some health problems experienced by people with intellectual disabilities are related to their underlying disability, especially various syndromes. People with Down syndrome, for example, are more likely to be born with differences in heart and gastrointestinal system development (congenital abnormalities); the development and structure of the teeth, tongue, and oral cavity may lead to higher rates of oral disease; disorders of thyroid function may be present at birth or occur at any time throughout life, as can impairments of hearing and/or vision impairment. People with Down syndrome are at higher risk of gastrointestinal and respiratory disorders including gastro-oesophageal reflux disease, coeliac disease, and sleep apnoea. People with Down syndrome are also susceptible to the onset of Alzheimer’s dementia at an earlier age than is typical in the general population (e.g. in their 50s rather than 70s); this onset can trigger disruptions to their lives and depression.

Because intellectual disability often occurs with other disabilities, such as cerebral palsy or autism, there may be multiple risk factors for poor health. For example, people who have cerebral palsy are susceptible to gastrointestinal disorders, particularly gastro-oesophageal reflux disease and constipation; dental and oral disease and orthodontic issues; musculoskeletal pain and fatigue; hearing and vision impairment; pressure injuries and skin breakdown; epilepsy; and anxiety and depression.

A person’s intellectual impairment can also contribute to poor health through the impact on communication and ability to process new information, especially if it is outside their recent experiences or routines. People with intellectual disabilities vary in what they can understand and how they express pain or discomfort. Some rely on people who know them well to notice and report changes that can signal to a health professional possible physical, oral, or mental ill-health. Communication and related difficulties can increase the risks associated with some diagnostic and treatment procedures (e.g. having to undergo a general anaesthetic to allow routine dental procedures) and reduce understanding of reasons for specific treatments and willingness to follow treatment instructions. For example, someone with severe–profound intellectual disabilities may remove catheters during hospital stays or fail to remain immobile as required to allow wounds to heal.

Communication difficulties also impact health literacy, that is, the capacity to access, understand, consider, and use information of relevance to a person’s health, such as public health messages in the media or following health advice by practitioners (Chinn, 2017). Health literacy provides the information needed to alert people to the need for preventative strategies, including seeking routine health screenings and making healthy choices each day. People with intellectual disabilities often do not have easy access to health promotion activities, including regular exercise or nutritional meal planning. They can miss out on health and cancer screening, healthy weight management, sexual health reviews, alcohol and other drug harm reduction discussions, and even vaccination programmes. Poor health literacy, therefore, contributes to poor health and, relatedly, poor quality of life.

Extrinsic Contributors to Poor Health

Where a person lives, who supports them, and the characteristics of health systems all contribute to a person’s health, with problems in any of these areas leading to poorer healthcare in comparison to the general population.

People with intellectual disabilities often live in socio-economic circumstances that limit their choices and undermine their ability to access good healthcare, participate in disease prevention interventions, and make healthy lifestyle choices. Employment can improve these circumstances, and many people with intellectual disabilities can engage in paid work. Employment offers not only financial security but also access to social networks outside the home and a sense of belonging and contributing to community. Unfortunately, the rate of unemployment is high for people with disability, in general, and particularly so for those with intellectual disabilities (Dempsey & Ford, 2009).

Where a person lives also includes whether they live in supported accommodation, such as group homes, with family, or in their own homes. People who live in supported accommodation are dependent on disability accommodation service providers for day-to-day decisions that impact their health and for access to healthcare services. Family involvement in these areas will vary between individuals and over time. For some people living in group homes, responsibility for health, including access to healthcare services, can be shared across available family members and disability support workers. However, people with intellectual disabilities often outlive their parents and, as parents age, parents may have their own health concerns and as they move towards the end of their own lives, their ability to support and advocate for their adult children declines. In these situations, the person with intellectual disability will rely increasingly on paid workers in all aspects of their lives, including health.

Disability support worker training does not focus on this role of building and maintaining optimal physical and mental health, nor does it provide information about how to navigate health systems and work with health professionals on behalf of people they support. Training during induction and later when on the job may include only basic aspects of healthcare, such as administering first aid and medication. In addition, service users may have one or multitudes of healthcare plans, such as those for managing epilepsy, asthma, or eating and swallowing problems. The development, oversight, and monitoring may be by various health or allied health providers, with varying support to direct support workers. As a result, disability support workers are often poorly prepared or supported to care for people with complex health problems or those who are at increased risk of ill-health (Iacono, 2010). This leaves many support workers feeling unclear about their role and how to best support good health and access appropriate health professionals and healthcare, despite often being called upon to assume these responsibilities on behalf of service users in their care. In the following section, the specific roles of direct support service staff that align with their training and sector expectations of non-health-trained staff are described.

The Role of Disability Support Workers

Disability support services staff, in particular disability support workers, play a vital role in day-to-day decisions that impact a person’s wellbeing. These include recognising and responding to possible signs of ill-health, accessing healthcare, and supporting the person during consultations. This role does not require disability support workers or their managers to have medical or health training or to be knowledgeable about a person’s intrinsic risk factors (such as knowing that people with Down syndrome require regular thyroid checks). Rather, fulfilling this role requires disability support workers to draw on principles of person-centred care and advocacy and to have good health and mental health literacy as is expected in the broader scope of disability support. The discussion that follows focuses on the role of workers and providers supporting people in group homes, although some of the material also applies to people living independently who still need support with their health.

Support in Making Day-to-Day Decisions that Promote Health and Wellbeing

The extent to which disability support workers in group homes can help service users make good health decisions will depend on their own health literacy and understanding of how decisions made on a regular basis can profoundly impact health and, in turn, life expectancy. For instance, disability support workers may offer and provide foods considered to be treats or plan meals that may be enjoyed but have high caloric and limited nutritional value. Workers may lack an understanding of the importance of regular daily healthy lifestyle choices on physical and mental health. Unfortunately, poor health choices by disability support workers can influence those same choices by service users: for example, smoking while sitting in the backyard with a service user exposes them to the effect of passive smoking and provides a model a service user may want to follow. Disability support workers, with strong support from practice leaders and managers, require sufficient health literacy to support healthy choices and lifestyles that lead to (a) physical fitness and a healthy weight; (b) good hygiene, including oral and bowel health and menstrual management in women; (c) optimal independent mobility; (d) avoidance of smoking and substance abuse; and (e) bone and joint health.

Armed with this health literacy, disability support workers can help service users with intellectual disabilities to make good choices across the day that will minimise the risk of chronic conditions, such as high blood pressure and being overweight, which can, in turn, lead to cardiovascular disease, diabetes, osteoporosis, arthritis, muscle weakness, and low energy. Maintaining good physical health also supports mental health by increasing the person’s ability and opportunity to engage in social activities, build and maintain social networks, and participate in and contribute to communities. People with intellectual disabilities require explanations, guidance, and opportunities to make healthy food choices, maintain a healthy weight, and engage in regular exercise to promote good cardio function and build strength. Evidence of the benefits of this support comes from a review of research by Heller et al. (2011). They found that supporting people with even severe intellectual disability to engage in community-based exercise programmes (such as fitness classes) and to make healthy food choices can improve their fitness and help them achieve a healthier weight. Psycho-social benefits were also found in this review to result from community-based exercise programmes, such as forming social connections and developing positive attitudes towards exercise. Important to achieving these benefits was help from disability support workers in accessing and engaging in these community programmes.

Responding to Possible Signs of Ill Health

Disability support workers have often supported individual service users over extended periods and know them well. This knowledge and seeing people in daily situations means that disability support workers are well placed to notice changes in a person that could signal health problems. Such changes can be seen in affect (being happy or sad), behaviours (becoming inactive or demonstrating challenging behaviours or behaviours of concern), or not wanting to engage with activities that would usually interest them or with people whose company they would typically seek out. These changes can indicate possible problems across physical, oral, or mental health. Direct support workers are not expected to know what the underlying problem is but rather to alert supervisors, managers, or family to the changes and to communicate them to healthcare providers.

Accessing Healthcare

People living in group homes are usually heavily reliant on their support staff to initiate, book, and support attendance at and follow up appointments with health professionals. The ability of disability support workers to advocate for and support access to healthcare will depend on their knowledge of the person’s health needs, which is more likely if they have taken an interest in and supported them over a long period of time. Disability support workers with limited knowledge of the person’s past and long-term social and medical history or who have worked with them for only a short period before being called upon to support their access to healthcare will need to collaborate with others. They will also need to have access to appropriate records, such as written observations made as part of health plans. Some general practitioners (GPs) will rely on structured strategies to ensure the person receives a comprehensive health check, such as through the use of the Comprehensive Health Assessment Program (CHAP), which has been rolled out across Australia (Lennox et al., 2013). The CHAP relies on collaboration between the person with intellectual disability, their GP, and direct support workers: structured observations of the service user and their medical history are recorded on a form by the direct support worker who shares it with the GP during a consultation. Responsibility for completing the support person’s section of the CHAP can be shared with available family members, who often can provide detailed information about the person’s medical history that may not be available to the disability support worker.

Disability support workers or managers must ensure that the person with disability sees appropriate health professionals for regular preventative care, such as physical and oral health checks, cardiovascular risk assessment, cancer screening, and vaccinations. Tools, such as the CHAP, which was designed to guide GPs through an annual health assessment, are particularly useful for those GPs who may be new to working with people with intellectual disabilities (van Dooren et al., 2016). Regular visits to healthcare practitioners can provide the care needed to achieve optimal outcomes for the person with disability while providing family and disability support workers with appropriate guidance to follow treatment recommendations at home.

Although disability staff or family may have responsibility for advocating for healthcare for a person with intellectual disability and supporting them to access it, adults with disability have the right to make decisions about their health and healthcare. Active involvement in decision-making will require assistance by family and/or disability support workers. This assistance may be in the form of providing and using educational material and communication systems or methods that reflect the person’s preferences and abilities. Having opportunities to practise being active in discussions and decisions is essential to developing confidence and competence. Every opportunity to practise and experience the outcomes of those decisions, at first with small decisions and then building to more impactful decisions, should be supported and embraced. As with any new task, more coaching and guidance are required at first, with a focus on the short- and long-term implications of decisions.

Supporting Communication During Healthcare Consultations

Supporting access to healthcare includes supporting direct communication between a health practitioner and the person with disability which, in turn, assists them to be active in decisions about their health and lives. Healthcare practitioners demonstrating a commitment to communicating directly with the person shows respect for the person with disability as an individual and provides reassurance in situations that can be unfamiliar and even distressing. Disability support workers often experience healthcare practitioners bypassing the person with intellectual disability by directing questions and conversation to them. Their reasons for this practice can include the practitioners need to obtain information quickly and efficiently because of the time-limited nature of a typical consultation, being uncertain of the person’s communication skills or unfamiliar with how they communicate, and general inexperience with people with communication differences. In these situations, an accompanying disability support worker can direct the practitioner’s attention to the person to encourage the practitioner to do the same, model ways to engage and communicate with the person (e.g. through the use of signs, pictures, or simple but adult language) and to request permission from the person with disability to provide information on their behalf. For more guidance on this communication see Iacono and Johnson (2004) which provides strategies for GPs to better communicate with people with intellectual disabilities.

Healthcare Systems

Knowing about healthcare systems and strategies to work with them can empower disability support workers to advocate for and facilitate access to good quality care across physical, oral, and mental health for people with intellectual disabilities.

Designed as Mainstream Systems

People with intellectual disabilities access the same mainstream healthcare services as used by all other members of the community: this is true for physical, dental, oral, and mental health services. Although services are provided by professionals skilled in specific health areas, many will have had little training in delivering their services to people with intellectual disabilities. As a result, professionals, including GPs, dentists and oral health practitioners, and psychiatrists and psychologists, can overlook symptoms because they mistakenly attribute them to the person’s disability or have difficulty adjusting to the person’s communication needs.

Mainstream services, traditionally, have not been designed to accommodate the access needs of people with various disabilities, especially by applying universal design principles or knowing what and how to provide reasonable adjustments. Rather, the standard structures of the healthcare system, particularly in primary healthcare—GP consultations—often do not meet the needs of people with intellectual disabilities in terms of their cognitive and communication difficulties. Standard short consultations are usually insufficient to address communication barriers and to enable people to take an active role in the consultation. Enhanced or extended consultations can help address this problem, as can access to tools, such as the CHAP mentioned earlier, which is designed to assist healthcare providers conduct regular and comprehensive health checks (Lennox et al., 2013). Comprehensive annual health assessments and regular reviews are required to monitor and detect health conditions that are known to be associated with certain disabilities (those intrinsic to the person). Long waits to be seen by a health practitioner can cause distress. Noisy or cramped waiting rooms can also be problematic. For those who also have physical disabilities, lack of access to appropriate equipment such as chair scales, Hi Lo (adjustable) beds, and hoists can be further barriers. Discomfort, confusion, anxiety, or fear may be expressed through unusual behaviours which may further undermine the health consultation.

Working Across the Disability and Healthcare Systems

There is mounting evidence that physical, dental, and mental health services can meet the needs of people with intellectual disability when reasonable adjustments are made. Many health practitioners and health services, however, still lack an understanding of how to adjust to the needs of this group or are reluctant to modify standard practices. The principle of making reasonable adjustments is integral to person-centred care; indeed, it is a legal requirement in many instances. As the benefits and rights of patients to person-centred care are recognised, there is evidence from Australian research that healthcare providers are increasingly making reasonable adjustments for people with disability (Wilson et al., 2022). This greater willingness may be the result of changes in training, which, although not focused on disability, encourage healthcare practitioners to consider the needs of individual patients (Wilson et al., 2022).

Disability support workers, especially those working in group homes, and their practice leaders and managers can act as the link between disability and health services, enabling healthcare providers to make reasonable adjustments to ensure care and services for people with intellectual disabilities. They also play a critical role in bridging supports across families and healthcare providers, including GPs, allied health practitioners, dentists and oral health practitioners, and psychiatrists and other mental health providers.

Reasonable adjustments rely on knowing the individual with disability. This includes their personality, preferences, communication abilities and strategies, health-related activities, past healthcare experiences, and current and past health issues. Sharing this information with healthcare providers and ensuring the role and experience of family are considered can promote the collaborative process required for quality healthcare. The appropriateness and success of reasonable adjustments will vary between individuals and across situations. The following examples require collaboration across disability service providers and healthcare providers:

  • Making appointments at times that suit the person (e.g. to avoid them missing out on favoured activities);

  • Minimising waiting times by phoning ahead to coordinate arriving when the practitioner will be available;

  • Requesting additional time (e.g. by booking an extended consultation) to enable optimal active participation of the person concerned and addressing all current health needs;

  • Seeking and providing a low stimulus environment, including a quiet space with lowered lighting where the person can wait;

  • Demonstrating how to adapt communication to the person’s preferences and ability;

  • Modelling plain language and visual aids for explanation and preparation;

  • Advocating for time and support for familiarisation with and desensitisation to environments or procedures that may be frightening (such as vaccinations, blood tests, mammograms, or dental examinations);

  • Requesting a plain language written summary of the outcomes of the consultation and any changes in management; and

  • Arranging review appointments to check that interventions have resulted in the expected outcomes.

In addition to facilitating reasonable adjustments by healthcare providers, the following strategies are recommended for managers and practice leaders. They will assist disability support workers to fulfil their role in improving the health and access to healthcare for the people with intellectual disabilities they support:

  • Require that, when possible, only disability support workers who know a person well accompany the service user to healthcare appointments;

  • Set expectations that disability support workers support healthcare access, but do not attempt to direct it (e.g. by requesting specific medications from GPs or failing to comply with treatment regimens because the support worker does not agree with it);

  • Require written records of changes noticed in individual service users, for sharing with healthcare providers (an example is the Depression Checklist, which is completed by support staff and given to the person’s GP—see Centre for Developmental Disability Health, in references);

  • Encourage disability support workers to demonstrate inclusive communication with an individual service user, which can incorporate non-speech modes of communication, for healthcare practitioners (see Iacono & Johnson, 2004); and

  • Encourage a culture of advocacy, whereby direct support workers are encouraged to advocate for service users by (a) communicating concerns to supervisors and managers; (b) making appointments with healthcare providers; and (c) supporting the implementation of recommended treatments, including by communicating information about these to other disability support workers.

The example of Amelia below illustrates some of the practice-related issues identified in this chapter. It draws on authors’ experiences as medical and allied health practitioners, as well as findings from their research. The example is de-identified and does not represent any one individual.

Forty-year-old Amelia lives in shared supported accommodation. She is usually active and socially engaged. She does not use speech but communicates enthusiastically using her body language, facial expressions, vocalisations, and photos on her iPad. Over the last few days, she has been unhappy and irritable and has been spending more time by herself in her room. Her support staff are concerned.A member of staff took her to the GP, but her usual doctor (Dr G) was not available so she saw another doctor (Dr B) whom she had not met before. Dr B listened to the support staff express their concerns but did not engage directly with Amelia until he wanted to do an examination. He found Amelia had a slight fever, but as he approached to do a full physical examination, Amelia pushed him away. When Dr B tried again, Amelia got up and left the room. Dr B said he was unsure what was wrong, but prescribed antibiotics because of the fever and said to return if Amelia was not better in a week.Amelia continued to deteriorate over the next few days. She stayed in her room and refused to eat and was reluctant to walk. The House Supervisor rang the GP surgery, explained the situation to the Practice Nurse, and asked for an appointment with Amelia’s usual doctor. She saw Dr G two days later and was supported by a worker Amelia knew and trusted. Dr G spent a few minutes engaging with Amelia and looking at photos on her iPad. She said she was sorry Amelia wasn’t feeling well and asked her if she had pain. Amelia’s eyes filled with tears. Dr G asked if she would let her look at her tummy to try and work out what was wrong. Amelia’s support worker and Dr G gently encouraged Amelia and supported her to get up on the examination couch. She was very tender in her abdomen and Dr G sent her for an ultrasound that showed gallstones. Amelia’s favourite support worker went with her to the ultrasound investigation, and on the way home they stopped to get the photo frame Amelia wanted.

The lack of direct engagement and communication by Dr B led to a failure of accurate diagnosis and a distressing and potentially dangerous delay in treatment. The disability support worker and the doctor were not able to work together at the appointment to support Amelia get the healthcare she needed.In contrast, in relation to the second appointment, the House Supervisor advocated for an appointment with Amelia’s own doctor. Dr G engaged directly with Amelia, building rapport, trust, and confidence. Her disability support worker supported Amelia during the consultation to tolerate the examination. Dr G conducted a full examination, identified an issue of concern, and referred Amelia for an abdominal ultrasound. The Practice Nurse informed the disability support worker about what would happen at the ultrasound appointment, and they discussed how to best support Amelia through the process. A staff member that Amelia knew and trusted accompanied her to the procedure, and she was able to tolerate the procedure with the worker’s support and encouragement. An accurate diagnosis was made which, in turn, enabled effective treatment to be provided.

Take Home Messages

  • People with intellectual disabilities have the same bodies, the same health conditions, and the same right to good healthcare as all other members of the community.

  • People with intellectual disabilities rely on the same health, mental health, and oral healthcare services used by everyone in the community, and these services are required to make reasonable adjustments to meet each person’s individual needs.

  • A proactive approach to healthcare is important when people are not able to clearly describe their symptoms. Anticipation of health conditions and the early detection of ill-health through the observations by disability support workers and family members is crucial for timely care.

  • Direct support workers need to be observant of changes in the person with intellectual disability’s behaviour, interests, or mood or physical appearance (such as a decrease or increase in weight or change in skin colour) and bring them to the attention of health professionals.

  • Participation in health promotion activities nurtures healthy bodies and minds and builds and reinforces healthy lifestyles. Preventative health strategies include counselling in relation to the use of alcohol and other drugs and sexual health; managing cardiovascular risk factors; cancer screening; timely immunisation; annual physical, mental, and oral health assessment; and regular review.

  • A collaborative partnership approach across family, friends, disability support workers, and health professionals, who each have a role in supporting people with intellectual disabilities, is essential to achieving and maintaining the optimal health, function and quality of life of people with intellectual disabilities. The common goal is to achieve and maintain optimal health and function and the best possible quality of life for the person.