Published for the British Institute of Learning Disabilities
Journal of Applied Research in Intellectual Disabilities 2015, 28, 22–32
Health and Disability: Partnerships in Health care Jane Tracy* and Rachael McDonald*,† *Centre for the Developmental Disability Health Victoria, Monash University, Notting Hill, Vic., Australia; †Department of Occupational Therapy, Monash University, Notting Hill, Vic., Australia
Accepted for publication 23 September 2014
Background Despite awareness of the health inequalities experienced by people with intellectual disability, their health status remains poor. Inequalities in health outcomes are manifest in higher morbidity and rates of premature death. Contributing factors include the barriers encountered in accessing and receiving highquality health care. Aims This paper outlines health inequalities experienced by people with intellectual disability and focuses on the opportunities medical education provides to address these. Strategies to ensure that health professional education is inclusive of and relevant to people with disabilities are highlighted. Conclusions The barriers experienced by people with intellectual disabilities to the receipt of high-quality health care include the attitudes, knowledge and skills of doctors. Improving medical education to ensure doctors are better equipped is one strategy to address these barriers. Improving health enhances quality of life, enables engagement and optimizes opportunities to
Background This paper offers an Australian perspective on work done to develop medical education in order to improve health care provided to people with intellectual disabilities. In Australia, the provision of health care of adults with intellectual disabilities largely depends on doctors who receive little training in disability, and disability support staff who receive little training in health. The resultant gaps in understanding and responsibility are key ingredients in the recipe for the poor health care received, and health outcomes experienced, by many people with disabilities (Tracy 2010). This paper highlights medical education as a strategy to address some of these barriers to health care. Indeed, © 2014 John Wiley & Sons Ltd
participate in and contribute to the social and economic life of communities. Keywords: health care, health professional education, healthcare team, intellectual disability health, intellectual disability, medical education, multidisciplinary team Accessible Abstract People with intellectual disabilities sometimes find it difficult to get the healthcare they need to stay well. Teaching student doctors about what people with disabilities want and need can help these students become better doctors. Good doctors help people get well and stay healthy and active. When people feel well they can enjoy their lives and join in activities in their community. This article talks about some of the things doctors need to learn, and some ways to teach them. People with disabilities have a very important role in teaching student doctors.
health professional education in this field is important across the health disciplines. The health care of people with intellectual and associated developmental disabilities is inherently interprofessional and requires the contribution of professionals from a range of health perspectives. The education of students and professional development of practitioners, across all health professions, is therefore central to optimal healthcare provision. Whilst acknowledging the fundamental importance of the multidisciplinary team, this study will focus on medical education. The aims of this paper are to • Review the health inequalities experienced by people with disabilities. • Describe medical education in relation to the healthcare needs of people with intellectual disabilities. 10.1111/jar.12135
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Inform future health professional education to reduce health inequities and inequality.
Health and Health Professional Education in Australia Australia is a nation of 23 million people (ABS 2013) in a country nearly the size of the United States of America. The governance is one of a democracy with a culture of egalitarianism and a well-developed welfare system. Universal health care (Medicare) was introduced in 1975 and a National Disability Insurance Scheme commenced in 2013 (NDIS Act 2013). Over half a million Australians have an intellectual disability (AIHW 2008) and, as elsewhere in the world, they experience a disproportionately high burden of morbidity and reduced life expectancy compared with the general population (Bittles et al. 2002; Einfeld et al. 2006; WHO 2011; AIHW 2012). People with intellectual disabilities are more likely to have multiple chronic physical health conditions, experience a higher prevalence of disorders of mental health, and are less likely to access health promotion and disease prevention programmes, including cancer screening (Beange et al. 1995; Dekker & Koot 2003; Einfeld et al. 2006; Lennox et al. 2007; Access Economics 2008; Mojtahedi et al. 2008; WHO 2011; Kavanagh et al. 2012; Taggart & Cousins 2014). A recent Australian state survey (Department of Health Victoria 2011) found that people with intellectual disabilities had higher rates of unhealthy body weight, musculoskeletal pain, polypharmacy and disorders of mental health than the general population. They also had lower rates of physical activity, sun protection and cancer screening. In Australia, people with intellectual disabilities receive most of their health care from the same services used by the rest of the population: mainstream health services. However, significant barriers to access and care exist. International and national human rights and antidiscrimination legislative instruments, the National Disability Strategy, and the recently commenced National Disability Insurance Scheme confirm the rights of all Australian citizens to equity of access to community-based services, including health care (United Nations 2006a,b; Council of Australian Governments 2011; NDIS Act 2013). Medical education in Australia has not yet addressed the particular health needs of people with intellectual disability in a systemic fashion. There are no specific requirements for Australian medical graduates to © 2014 John Wiley & Sons Ltd, 28, 22–32
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develop specific competencies in working with people with intellectual and associated developmental disabilities (Australian Medical Council 2012). Instead, leadership, teaching and mentorship in this area of practice rely on the commitment of individual educators and practitioners. This has led to widely differing exposure of students to the issues of people with intellectual disabilities between medical schools. The consensus among medical professionals committed to the area, people with disabilities and the family members, friends and paid staff who support them, is that current medical training, both in Australia and elsewhere, does not adequately prepare graduates for their work with people with disabilities (National People with Disabilities & Carer Council 2009; WHO 2011; AADDM 2014). The standards required by the Australian Medical Council, the accreditation body for Australian medical schools, include graduate professional attributes in the domains of scholarship, professional practice, health advocacy and leadership (Australian Medical Council 2012). It is implicit that medical practitioners demonstrate these qualities when working with all their patients; however, this is not the experience of many people with disabilities (National People with Disabilities & Carer Council 2009). Addressing the barriers they encounter to receiving good health care through attention to the training of doctors and other health professionals has been acknowledged as a key strategy in achieving improved universal health care in Australia (National People with Disabilities & Carer Council 2009; WHO 2011). The World Health Organisation has specifically identified the training and education of health professionals as an area requiring particular focus in order to reduce barriers to health care and enable people to attain optimal health and function: ‘Education and training for health care workers about disability is an important priority to increase awareness about the health care needs of people with disabilities and improve access to services’ (WHO 2011, p. 78). The inclusion of medical education, and professional development of doctors, is a crucial component within this broader priority target.
Health Inequality and Barriers to Health Care The health status of people with intellectual disability remains poor despite increasing knowledge over several decades of the stark health disparities they experience
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(Beange et al. 1995; van Schrojenstein Lantman-de Valk et al. 1997; Hollins et al. 1998; Cooper et al. 2004; Emerson & Baines 2010; O’Hara et al. 2010). The differences in health outcomes are manifest in the increased morbidity and rates of premature death among people with intellectual disabilities (Scheepers et al. 2005; AIHW 2012; Kavanagh et al. 2012; Baxter et al. 2006; Heslop et al. 2013; Tomlinson et al. 2014). Underlying causes of disadvantage and barriers to health care experienced by people with intellectual disabilities are multiple, complex and interrelated. They include biological, psychological, social, physical, economic, educational, communication, physical and mental health vulnerabilities, and the attitudes, knowledge and skills of health professionals (OuelletteKuntz 2005; Lennox & Taylor 2008; van Schrojenstein Lantman-de Valk & Walsh 2008; Emerson & Baines 2010; O’Hara et al. 2010; Katterl & Bywood 2011; WHO 2011). Emerson (2011) identifies five key factors in the health inequalities of people with disabilities and one of is poor access to healthcare provision. The others relate to the social determinants of poor health, the intrinsic health vulnerabilities, communication difficulties and level of heath literacy and lifestyle risk factors (Emerson 2011). Australian primary healthcare research has shown a lack of knowledge about treating people with disabilities (Katterl & Bywood 2011). Medical practitioners have acknowledged their lack of training in working with people with intellectual disability and expressed interest and willingness to engage in continuing medical education in this area (Lennox et al. 2004; Phillips et al. 2004). Barriers that can be addressed through medical education and training include health professional attitudes, knowledge and skills. Areas worthy of specific attention include the development of the ethical basis of healthcare provision including social justice, beneficence and equity; attitudes reflecting value and respect for each individual; knowledge of general medicine and the implications of disability for health care; sources of further information and support for ongoing learning; appreciation of the legal and ethical foundations for care; understanding of communication in all its forms; skills including effective communication with people from diverse backgrounds; ability to work in partnership with family, paid carers, and professionals from various health and social disciplines; and an appreciation of the complex, interrelated nature of health and social issues in the lives of people with
disabilities. There is also a pressing need for education around the benefits and use of available tools and information to improve care, such as healthcare guidelines, structured comprehensive health assessments and health checks (Baxter et al. 2006; Royal College of General Practitioners 2010; Katterl & Bywood 2011; Sullivan et al. 2011; Lennox et al. 2013). People with intellectual disabilities often require more time for consultations because of the complexity of health and social concerns; communication, cognitive and physical difficulties; and the need to work with the person’s support network including family and/or paid support staff. Time pressure, on both the patient and doctor, can undermine effective communication and interventions and result in consultations focusing on acute presenting problems and other urgent issues, with less attention paid to long-term health, preventive health care, and health promotion activities (Chew et al. 2009; Taggart & Cousins 2014). An energetic, proactive approach to health care is required to address current health concerns and anticipate potential future health issues, including a focus on disease prevention and health promotion (Department of Health 2011; Lennox et al. 2013; Taggart & Cousins 2014). Such an approach to care requires the support of a health system that acknowledges the expertise and time required to work with people with intellectual disabilities, and provides structures for provision of care, and the training and support of health professionals.
Health Service Issues The health system in Australia is based on General Practitioners (GPs) providing primary care services and referring to allied health and specialist medical practitioners as required [Lennox & Eastgate 2004; Australian Government Department of Health & Ageing (DoHA) 2009]. For children with disabilities, paediatricians work with GPs to provide and coordinate health care and access appropriate health, social and other community services. Children with intellectual disabilities are known to have a much higher prevalence of chronic physical and mental health conditions (Dekker & Koot 2003; Einfeld et al. 2006; Oeseburg et al. 2011) and are supported by a well-developed infrastructure that enables access to a range of allied health services to meet their needs. Adults with disabilities also have chronic, complex health and social needs (Scheepers et al. 2005; Katterl & © 2014 John Wiley & Sons Ltd, 28, 22–32
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Bywood 2011; Sullivan et al. 2011); however, there is no accredited specialist area of practice in intellectual or developmental health in Australia, and so the provision and coordination of care rests primarily with GPs (Vanny et al. 2008; Woods 2011). There is, however, a lack of support for GPs when providing care to adults with intellectual disabilities. There are few easily identifiable networks of health professionals and services to which GPs can refer when the complexity of care is outside their experience and expertise. Particular challenges are encountered, by both patient and doctor, at times of transition (e.g. child to adult services) and when a person’s needs cross-service boundaries (disability/health, disability/mental health and disability/aged care services) (O’Hara et al. 2010; WHO 2011). The lack of professional support contributes both to the challenges experienced by GPs caring for people with intellectual and associated developmental disabilities, and to the stark health inequalities experienced by this group (National Health and Hospitals Reform Commission 2009). There are populations within our Australian community known to have complex health and social needs, including indigenous Australians, the elderly and refugees. The complexity of their health needs has been recognized and a suite of health assessments developed to guide doctors through targeted comprehensive health assessments and remunerate them for the time required (Australian Department of Health 2014a). In a move to address some of the barriers to care for people with intellectual disabilities, the Health Assessments for People with Intellectual Disabilities was added to this suite of services in 2007 (Robertson et al. 2011; Gordon et al. 2012; Australian Department of Health 2014b). The benefits of health assessments are clear. They enhance patient care and have been shown not to increase overall consultation or medication costs (Gordon et al. 2012). Proactive comprehensive health assessments have consistently led to detection of unmet health needs and targeted actions to address health needs (Baxter et al. 2006; Lennox et al. 2007; O’Hara et al. 2010; Royal College of General Practitioners 2010; Robertson et al. 2011; Sullivan et al. 2011). Most Australian states, including Victoria, now mandate yearly health assessments for people with intellectual disabilities living in state funded accommodation services (Disability Services 2013). The Comprehensive Health Assessment Profile (CHAP) (Lennox et al. 2007) is widely encouraged to guide and inform this assessment. GPs perceive the CHAP as a structured and comprehensive approach to the © 2014 John Wiley & Sons Ltd, 28, 22–32
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detection of medical problems as well as an aid in overcoming communication barriers between the doctor, the person with disability and support staff (Lennox et al. 2013).
Developing Medical Education in Disability Health in Victoria, Australia The benefits of addressing the healthcare needs of people with intellectual disability within medical student training are twofold. The first is the inherent value in improving the care, health and well-being of people with disabilities. The second is the opportunity to build the values, attitudes, skills and knowledge essential to the provision of high-quality health care to all patients with chronic and complex health and social needs, communication difficulties and the need for health advocacy and support. Structured teaching in the health care of adults with developmental disabilities in the state of Victoria first commenced in the early 1990s. Before then Victorian medical students graduated with little appreciation of the implications of intellectual disability for lifetime health, and the effect of chronic ill health on the lives of people with disabilities. Formal teaching in developmental disability had been confined to the paediatric field and graduating doctors had little exposure to or experience in providing health care to adults with intellectual and communication disabilities. These gaps in training resulted in a lack of awareness, knowledge and skill that, in turn, contributed to people with disabilities not receiving the health care they required in both community and hospital care (Iacono & Davis 2003; Iacono et al. 2004; Phillips et al. 2004; Department of Health 2011). In 1991, a joint initiative of the Victorian State Government, Monash University and the University of Melbourne led to the establishment of small academic Intellectual Disability Units within each of the two Victorian medical schools. The aim of these units was to provide both leadership and a focus for clinical, educational and research activities designed to improve health outcomes for people with intellectual disabilities in the state. Throughout the 1990s, teaching sessions were provided to students in an opportunistic fashion when curriculum time became available. In 1998, these Disability Units combined to form the Centre for Developmental Disability Health Victoria (CDDHV). In 1999–2000, both Victorian medical schools embarked upon a major review of their undergraduate medical curricula. This review created a precious
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opportunity for CDDHV staff to work with curriculum developers and ensure a focus on the health of people with intellectual and associated developmental disabilities was included within the new curricula. In one medical school, this resulted in the development of a comprehensive vertically integrated curriculum enabling concepts and practice to be built on past learning and experience. In the second medical school, the learning was less structured, but students were exposed to key issues at multiple times during their course. Since then, most graduates of these medical schools have had the opportunity to develop an understanding of the healthcare needs of people with intellectual and associated developmental disabilities during their training. Evidence-based statements on health issues, healthcare guidelines and use of structured health assessments have both informed core curriculum content and provided guidance in medical practice (IASSID 2002; van Schrojenstein Lantman-de Valk & Walsh 2008; Royal College of General Practitioners 2010; Robertson et al. 2011; Sullivan et al. 2011; Lennox et al. 2013).
People with Disabilities as Educators People with disabilities are the experts in their own experience and their involvement in the teaching and training of health professionals is essential to respectful, relevant and effective practice. Many medical students do not know someone with an intellectual or severe physical disability personally and feel uncertain about how best to communicate and work with someone with a cognitive impairment or someone who communicates without speech. Positive personal experience is a powerful way of breaking down barriers and developing increased student comfort and confidence in working with people with diverse cognitive and communication abilities (Tracy & Iacono 2008). The CDDHV has sought to work with people with disabilities in the development and implementation of medical student teaching. People with intellectual and physical disabilities are employed as both tutors and presenters in teaching sessions. In working with medical students to assist them meet learning objectives relating to skills in communicating with people with expressive and/or receptive language difficulties, young people with disabilities also meet their own learning objectives of self-advocacy, public speaking, teaching and employment.
People with physical and intellectual disabilities are also part of the collaborative team when teaching resources are designed and developed. For example ‘Health and Disability: Partnerships in Action’ (Tracy et al. 2008), an interactive interprofessional multimedia teaching and learning resource, was developed through a collaboration between six people with disabilities and their support networks, and a multidisciplinary group of health professionals and educators. The resource provides a personal context for student learning and focuses both on health issues for people with a disability and on interprofessional practice. It forms the foundation for most of the Centre’s educational activities.
Ensuring the Inclusion of Disabilityspecific Information in Medical Curricula In 1999, Lennox and Diggens published their survey of Australian medical schools and concluded that ‘medical schools differ widely in the amount of teaching offered and this is influenced by the presence of academic appointments in intellectual disability’ (Lennox & Diggens 1999, p. 333). Unfortunately, this remains the case today. There are no specific requirements for all medical schools to develop systems to ensure the needs of this particular vulnerable population are addressed within the medical curriculum (Australian Medical Council 2012). Content development and delivery in this area therefore still depends on individual ‘champions’ within medical schools. There is great competition for time within medical courses. To ensure the needs of people with intellectual and associated developmental disabilities are addressed, teaching sessions and resources must be seen by curriculum decision makers as having wider relevance to population health issues (for example disadvantaged populations, cost of health care); being responsive to social, legislative and policy change (Human Rights discourse, UN Conventions, National Disability Insurance); addressing current national health priority areas (mental health, dementia, obesity) and related policy (chronic disease management, electronic health records); applying to curriculum areas earmarked for emphasis (interprofessional education, ethical and professional behaviour); providing opportunities for integration of curriculum across medical discipline boundaries; and building desired graduate attributes. A focus on the health care of people with intellectual and associated developmental disabilities provides an effective and relevant platform for teaching, learning and experience in all the above areas. © 2014 John Wiley & Sons Ltd, 28, 22–32
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Specific learning objectives associated with teaching sessions in Developmental Disability Health in Victoria are constantly evolving in order to remain current, relevant and achieve priority in competition for curriculum time. Overarching objectives, however, remain stable and seek to ensure medical graduates have opportunities to apply graduate attributes required by the Australian Medical Council (2012) for the graduate doctor to be scientist, scholar, practitioner, health advocate, professional and leader can be applied to the care of people with intellectual disabilities. Broadly, learning objectives on which CDDHV curriculum components are designed seek to enable students to: • Appreciate current inequities and discrimination in healthcare access and provision, and their manifestation in physical and mental health outcomes. • Build the attitudes, knowledge and skills required to provide high-quality comprehensive health care to people with complex health and social needs, including those with disabilities. • Recognize the legal and ethical frameworks within which medicine is practised, and how these relate to the care of people with intellectual disabilities. • Include people with disabilities and the family members, disability workers and advocates who support them, in the identification, assessment, management and monitoring of physical and mental health conditions, healthcare decision-making, and the implementation and evaluation of interventions. • Identify strategies to minimize the barriers to highquality health care experienced by people with intellectual disabilities, including strategies for effective communication, and to provide health advocacy as required. • Understand the fundamental importance of multidisciplinary partnerships and teamwork in health care. These partnerships include those with the patient, family, disability staff, medical specialists and allied health professionals. • Develop knowledge of community services and information sources in the health, disability and social sectors to identify sources of professional information and support and to develop referral networks. Core competencies built through focusing on the health care provided to people with intellectual and associated developmental disabilities are applicable to many other vulnerable patient groups. These general competencies include the knowledge and skills required to work effectively with people who have chronic and complex © 2014 John Wiley & Sons Ltd, 28, 22–32
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needs; cognitive and communication difficulties; carers and advocates; and those who experience social and financial disadvantage and marginalization. Generally applicable competencies also include working collaboratively in healthcare teams and knowing how to source information, appropriate services and professional support. Specific competencies relate to appreciating health risks, vulnerabilities and issues associated with particular disabilities, such as Down syndrome or cerebral palsy. An understanding of the common disabilities and their implications for health and health care is required, as is the knowledge of where to source information about less common conditions. Providing opportunities for students to work with, and be taught by, people with intellectual and other developmental disabilities are, in our view, essential elements of medical education. Such firsthand experience with people with disabilities and those who share their lives is crucial to the design and delivery of curriculum to ensure the issues covered are relevant, and students build positive and respectful attitudes. The maxim ‘assessment drives learning’ certainly applies to medical students and/or Centre makes every effort to submit examination questions for both formative and summative examinations so students continue to see the teaching as valued and relevant to their course and their practice. The present authors continue to work towards a time when all medical graduates have the attitudes, knowledge and skills to enable them to contribute to meeting the interdependent health and social needs of people with intellectual and associated developmental disabilities.
Specialist Training Programmes After graduation, Australian medical practitioners enter training programmes for their chosen area of medical practice. Until recently the training programmes, overseen by the specialist colleges, have not included specific competencies in the care of people with intellectual disabilities within the learning objectives for trainees. Now, however, both the Royal Australian College of General Practitioners and the Royal Australian and New Zealand College of Psychiatrists include such competencies. The 2011 Curriculum for the Royal Australian College of General Practitioners (RACGP) included a specific chapter on disability, stating ‘People with disability make up a significant part of most general practice populations. These people may have multiple comorbidities, and GPs have
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a key role in the management of these disabilities and associated health problems. In addition, the disability itself can be a barrier to accessing health services, and the GP will often have a role in facilitating appropriate and timely access to services, as well as providing ongoing management of health issues’ (RACGP 2011, p. 98). There are specific learning objectives identified as important at each stage of the professional life of the General Practitioner. All are relevant to the care of people with intellectual disabilities, and some focus specifically on this population group, for example, one learning objectives states that the GP will ‘Demonstrate an understanding of the health inequalities experienced by people with intellectual disability, the associated barriers to health equity and the role of the GP in overcoming these barriers’ (RACGP 2011, p. 104). Likewise, the Royal Australian and New Zealand College of Psychiatrists now includes professional competencies in working with people with intellectual disabilities as a part of their training programme and, in 2011, formally established a Special Interest Group in Psychiatry of Intellectual and Developmental Disabilities. These initiatives are of great importance in raising the profile of this population and clarifying the responsibility of medical practitioners to address their health needs. This responsibility implies the necessity of acquiring the specific knowledge and skills to do so effectively. It is our view that all specialist training programmes should include elements of training specific to people with intellectual disabilities, and note that the knowledge thus acquired would benefit other vulnerable patient groups.
Continuing Medical Education It takes many years for medical students to complete their training and emerge as independent practitioners. Medical courses in Australia are generally four to six years in duration, followed by at least one year postgraduate work, usually in a public hospital and then a number of years (depending on specialty and on full or part time work) of specialist training. The inclusion of a focus on the health care of people with intellectual and associated developmental disabilities is relatively recent in Victoria and the amount and quality of training in this area remains highly variable. Most doctors in current practice, therefore, have had little or no training in the health and healthcare issues of people with intellectual and other developmental disabilities.
Attending to the continuing professional development and resource needs of medical practitioners in the current workforce are areas of focus for the Centre. Staff present regularly at General Practice and other health conferences and provide professional development through the professional organizations, and within training programmes for general practice, psychiatry and paediatrics. Web resources inform and support both medical practitioners and students. In Australia, there is little opportunity for early career professionals wishing to acquire expertise and experience in working with people with intellectual disabilities within a supported clinical setting. The Intellectual Disability Physician training programme in the Netherlands is much admired by Australian doctors working in the field (Evenhuis & Penning 2009).
Responsibility for Medical Education The need to specifically address medical education in relation to the health care of people with intellectual disabilities is clear, and there have been a range of innovative teaching initiatives to engage medical students and provide learning in this field of practice (Hall & Hollins 1996; Tracy & Graves 1996; Piachaud 2004; Jain 2006; Sullivan et al. 2011; Ouellette-Kuntz et al. 2012; Jain et al. 2013). There remains, however, a dependence on local ‘champions’ advocating for inclusion of this area within medical curricula, and developing and teaching course material. Although such ‘champions’ are important advocates and enablers, the commitment to addressing the health needs of people with intellectual disability must not rely on individuals. Robust policy, resilient systems and enabling structures are required to ensure medical education responds to the needs of this important and disadvantaged population in lasting and sustainable ways. Mechanisms to ensure the sustainability of teaching in this area depend on a number of factors. Curriculum time must be allocated, appropriate learning objectives set, and teaching modes developed to engage students and facilitate learning. Committed and skilled teaching staff must be identified to lead teaching and learning in this important area of curriculum delivery, and succession plans developed through the development and mentoring of junior staff. There is a need for overarching medical school accreditation and regulatory organizations, as well as individual medical schools, to embrace this © 2014 John Wiley & Sons Ltd, 28, 22–32
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responsibility and mandate universal medical education in this area.
Working Together in Health Care Through rigorous, proactive health care, people with intellectual disabilities can be supported to maintain optimal health and function. Access to and receipt of optimal health care depends on partnerships and constructive and effective collaboration between the person with the disability, those who support them (often family or paid disability staff) and health professionals. The disability support worker is a central part of the healthcare team for many people with intellectual disabilities. Effective communication between members of the team requires mutual understanding and respect. Misconceptions, misunderstandings, gaps in knowledge and skills, and logistic barriers can undermine the establishment of effective partnerships between health and disability staff. An understanding by health professionals of the role, training and occupational context of disability support workers is crucial to the development of respectful partnerships, effective communication and efficient collaboration. A proficient team can support the achievement and maintenance of optimal health and function for people with lifelong, complex and interrelated health and social needs. Most disability support workers have little or no formal training in health care. This is incompatible with the vital role they play in monitoring the health status of, and being a health advocate for, people with intellectual disabilities. People who have significant communication impairments may initially manifest a disorder of physical or mental health through a change in their behaviour (Davis & Mohr 2004; Woods 2011; Koritsas & Iacono 2012). A disability support worker who knows the person well is likely to be the first person to notice the behaviour change and therefore plays both a primary role in identifying signs of ill health and in facilitating access to appropriate and timely health care. Support workers must then assist the person to communicate directly with the health professional; convey their own concerns to the health professional; provide information about the person’s past medical history; work with the health professional to design appropriate interventions; support the implementation of the intervention; monitor the response; and arrange review if the expected response does not eventuate. Education of disability support workers in relation to their role in health care is therefore essential to enable them to play their part in the healthcare team. © 2014 John Wiley & Sons Ltd, 28, 22–32
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It is vital that the medical practitioner engages with both the person with the disability and, where appropriate, disability support staff, as partners in the healthcare team. Education of the health professional about the role, responsibilities and training of disability staff is important to facilitate a respectful and effective partnership. Health professionals and disability workers can, together, support someone with an intellectual disability to maintain optimal physical and mental health, function and well-being, and so be able to take advantage of opportunities for social and economic participation in their communities. This study has focused on the education of medical practitioners, but it is crucial to emphasize the importance of a multidisciplinary approach to health care. No one health professional can address all the health and social issues of people with multiple and chronic needs, including people with intellectual disabilities. The perspective and expertise of a range of health professionals is needed to understand and address current and future concerns; and a multidisciplinary team is therefore essential to provide comprehensive and holistic health care. A healthcare team comprising health professionals from relevant disciplines can address multiple contributors to ill health and functional loss, and to factors essential to achieving and maintaining optimal health. Developing skills in multidisciplinary collaboration in healthcare teams is fundamental to the practice of good health care (WHO 2010, 2011).
Conclusions People with intellectual disabilities continue to experience multiple barriers to the receipt of highquality health care. These barriers include the attitudes, knowledge and skills of doctors. Strategies to reduce barriers to health care, therefore, include the education of doctors and other mainstream health professionals. The establishment of pathways for acquisition of additional knowledge and expertise for those wishing to specialize in this area of practice is also required. Inclusion of educational activities that include people with disabilities both ensures the knowledge and skills acquired are relevant and appropriate, and influences the attitudes of health professionals in training. The provision of health care to people with intellectual disabilities requires effective, respectful three-way collaboration between the individual, their support network (including disability workers and/or family members) and their healthcare professionals. This
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triadic interaction occurs within the context of a legislative, policy and service delivery framework. Factors at any part of this framework can facilitate or undermine effective healthcare provision. Legislators, policy-makers, regulators of medical education, curriculum developers and designers within medicals schools, and health professional organizations all have a role in ensuring specific and targeted attention is paid to the training of medical and other health professionals in this area of practice. The provision of good health care to adults with intellectual disability could address many conditions that cause pain, discomfort, functional loss and premature death. Attention paid to improving health outcomes of this vulnerable group will enhance the quality of life for the individual and their family and optimize the opportunities for people with intellectual disability to live rich and engaged lives and participate in the social and economic life of their families and communities.
Acknowledgments The Centre for Developmental Disability Health Victoria is funded by the Department of Human Services, State of Victoria, Australia.
Conflict of interest Nil.
Correspondence Any correspondence should be directed to Jane Tracy, Centre for Developmental Disability Health Victoria, Monash University, Building 1, 270 Ferntree Gully Rd, Notting Hill, Vic. 3168, Australia (e-mail: jane.tracy@ monash.edu).
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Einfeld S. L., Piccinin A. M., Mackinnon A., Hofer S. M., Taffe J., Gray K. M., Bontempo D. E., Hoffman L. R., Parmenter T. & Tonge B. J. (2006) Psychopathology in young people with intellectual disability. The Journal of the American Medical Association 296, 1981–1989. Emerson E. (2011) Health status and health risks of the hidden majority of adults with intellectual disabilities. Intellectual and Developmental Disabilities 49, 155–165. Emerson E. & Baines S. (2010) Health Inequities and People With Learning Disability in the UK: 2010. Learning Disabilities Observatory, Durham. Evenhuis H. & Penning C. (2009) Eight years of specialist training of Dutch intellectual disability physicians. Journal of Policy and Practice in Intellectual Disabilities 6, 276–281. Gordon L., Holden L., Ware R., Taylor M. & Lennox N. (2012) Comprehensive health assessments for adults with intellectual disability living in the community: weighing up the costs and benefits. Australian Family Physician 41, 969–972. Hall I. S. & Hollins S. (1996) The Strathcona Theatre Company: changing medical students’ attitudes to learning disability. Psychiatric Bulletin 20, 429–430. Heslop P., Blair P., Fleming P., Hoghton M., Marriott A. & Russ L. (2013) Confidential Inquiry into Premature Deaths of People with Learning Disabilities. Norah Fry Research Centre, Bristol. Hollins S., Attard M., von Fraunhofer N., McGuigan S. & Sedgewick P. (1998) Mortality in people with learning disability: risks, causes and death certification. Developmental Medicine and Child Neurology 40, 50–56. Iacono T. & Davis R. (2003) Experiences of people with developmental disability in Emergency Departments and hospital wards. Research in Developmental Disabilities 24, 247–264. Iacono T., Humphreys J., Davis R. & Chandler N. (2004) Service provision for country people with developmental disability: an Australian perspective. Research in Developmental Disabilities 25, 265–284. International Association for the Scientific Study of Intellectual Disability (IASSID) (2002) Health guidelines for adults with an intellectual disability. Available at: www.iassid.org/pdf/ healthguidelines-2002 (accessed on 4 January 2014). Jain S. (2006) Care of patients with disabilities: an important and often ignored aspect of family medicine teaching. Family Medicine 38, 3–13. Jain S., Foster E., Biery N. & Boyle V. (2013) Patients with disabilities as teachers. Family Medicine 45, 37–39. Katterl R. & Bywood P. (2011) Primary health care for people with intellectual disabilities. RESEARCH ROUNDup Issue 17. Adelaide: Primary Health Care Research & Information Service. Available at: http://www.phcris.org.au/publica tions/researchroundup/issues/17.php (accessed on 2 June 2014). Kavanagh A., Krnjacki L. & Kelly M. (2012) Disability and Health Inequalities in Australia: Research Summary: Addressing the Social and Economic Determinants of Mental and Physical Health. Victorian Health Promotion Foundation, Carlton
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South, Vic. Available at: www.vichealth.vic.gov.au/ Publications/Health-Inequalities/Disability-and-health-inequ alities-in-Australia.aspx (accessed on 20 January 2014). Koritsas S. & Iacono T. (2012) Challenging behaviour: the causes (part II). Advances in Mental Health and Intellectual Disabilities 6, 236–248. Lennox N. G. & Diggens J. (1999) Medical education and intellectual disability: a survey of Australian Medical Schools. Journal of Intellectual and Developmental Disability 24, 333–340. Lennox N. & Eastgate G. (2004) Adults with intellectual disability and the GP. Australian Family Physician 33, 601–606. Lennox N. & Taylor M. (2008) Health care for people with intellectual disability. Medical Journal of Australia 189, 90. Lennox N., Millar L. & Chorlton M. (2004) People with intellectual disability: barriers to the provision of good primary care. Australian Family Physician 33, 657–658. Lennox N., Bain C. & Rey-Conde T. (2007) Effects of a comprehensive health assessment programme for Australian adults with intellectual disability: a cluster randomized trial. International Journal of Epidemiology 36, 139–146. Lennox N., Brolan C., Dean J., Ware R., Boyle F., Taylor Gomez M., van Dooren K. & Bain C. (2013) General practitioners’ views on perceived and actual gains, benefits and barriers associated with the implementation of an Australian health assessment for people with intellectual disability. Journal of Intellectual Disability Research 41, 380–390. Mojtahedi M. C., Boblick P., Rimmer J., Rowland J., Jones R. & Braunschweig C. (2008) Environmental barriers to and availability of healthy foods for people with mobility disabilities living in urban and suburban neighborhoods. Archives of Physical Medicine & Rehabilitation 89, 2174–2179. National Disability Insurance Scheme (NDIS) (2013) Act 2013 (Cth). Austl. National Health and Hospitals Reform Commission (2009) A Healthier Future for All Australians – Final Report December 2009. Commonwealth of Australia, Canberra, ACT. National People with Disabilities and Carer Council (2009) Shut Out: The Experience of People With Disabilities and Their Families in Australia. National Disability Strategy Consultation Report. Commonwealth of Australia, Canberra, ACT. Oeseburg B., Dijkstra G., Groothoff J., Reijneveld S. & Jansen D. (2011) Prevalence of chronic health conditions in children with intellectual disability: a systematic literature review. Intellectual and Developmental Disabilities 49, 59–85. O’Hara J., McCarthy J. & Bouras N. (eds) (2010) Intellectual Disability and Ill Health: A Review of the Evidence. Cambridge University Press, Cambridge. Ouellette-Kuntz H. (2005) Understanding health disparities and inequities faced by individuals with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities 18, 113–121. Ouellette-Kuntz H., Burge P., Cleaver S., Isaacs B., Lunsky Y., Jones J. & Hastie R. (2012) Attitudes of medical clerks toward persons with intellectual disabilities. Canadian Family Physician 58, e282–e288.
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Phillips A., Morrison J. & Davis R. W. (2004) General practitioners’ educational needs in intellectual disability health. Journal of Intellectual Disability Research 48, 142–149. Piachaud J. (2004) Teaching learning disability to undergraduate medical students. Advances in Psychiatric Treatment 8, 334–341. Robertson J., Roberts H., Emerson E., Turner S. & Greig R. (2011) The impact of health checks for people with intellectual disabilities: a systematic review of evidence. Journal of Intellectual Disability Research 55, 1009–1019. Royal Australian College of General Practitioners (RACGP) (2011) The RACGP Curriculum for Australian General Practice 2011: Disability. Royal Australian College of General Practitioners South Melbourne, South Melbourne, Vic. Available at: http://curriculum.racgp.org.au/statements/ disability (accessed on 24 January 2014). Royal College of General Practitioners (2010) A step by step guide for gp practices: annual health checks for people with a learning disability. Available at: http://www.rcgp.org.uk/clinicaland-research/clinical-resources/~/media/Files/CIRC/CIRC76-80/CIRCA%20StepbyStepGuideforPracticesOctober%2010. ashx (accessed on 26 May 2014). Scheepers M., Kerr M., O’Hara D., Bainbridge D., Cooper S.-A., Davis R., Fujiura G., Heller T., Holland A., Krahn G., Lennox N., Meaney J. & Wehmeyer M. (2005) Reducing health disparity in people with intellectual disabilities: a report from health issues special interest research group of the international association for the scientific study of intellectual disabilities. Journal of Policy and Practice in Intellectual Disabilities 2, 249–255. van Schrojenstein Lantman-de Valk H. & Walsh P. (2008) Managing health problems in people with intellectual disabilities. British Medical Journal 337, a2507. van Schrojenstein Lantman-de Valk H., van den Akker M., Maaskant M., Haveman M., Urlings H., Kessels A. & Crebolder H. (1997) Prevalence and incidence of health problems in people with intellectual disability. Journal of Intellectual Disability Research 41, 42–51. Sullivan W., Berg J., Bradley E., Cheetham T., Denton R., Heng J., Hennen B., Joyce D., Kelly M., Korossy M., Lunsky Y. & McMillan S. (2011) Primary care of adults with developmental disabilities. Canadian consensus guidelines. Canadian Family Physician 57, 541–553.
Taggart L. & Cousins W. (eds) (2014) Health Promotion for People With Intellectual Disabilities. Open University Press/McGrawHill Publishers, Maidenhead. Tomlinson M., Yasamy M. T., Emerson E., Officer A., Richler D. & Saxena S. (2014) Setting global research priorities for developmental disabilities including intellectual disability and autism. Journal of Intellectual Disability Research doi: 10. 1111/jir.12106. Tracy J. (2010) Achieving equity in healthcare provision: a health action plan. In: State Disability Policy for the Next Ten Years – What Should it Look Like? Proceedings of the Fifth Roundtable on Intellectual Disability Policy (eds C. Bigby & C. Fyffe), pp. 82–92. LaTrobe University, Bundoora, Vic. Tracy J. & Graves P. (1996) Medical students and people with disabilities: a teaching unit tor medical students exploring the impact of disability on the individual and the family. Medical Teacher 18, 119–124. Tracy J. & Iacono T. (2008) People with developmental disabilities teaching medical students – Does it make a difference? Journal of Intellectual and Developmental Disabilities 33, 345–348. Tracy J., Williams B., Iacono T., Galea J., Hanson S. & Burbidge M. (2008) Health and disability: interprofessional education of healthcare students. Journal of Interprofessional Care 22, 549–551. United Nations (2006a) Convention on the Rights of Persons With Disabilities. New York. Available at: www.un.org/disabili ties/default.asp?id=150 (accessed 20 January 2014). United Nations (2006b) Article 25, The Right to Health, Convention on the Rights of People with Disabilities. Available at: www.un.org/disabilities/default.asp?id=285 (accessed on 20 January 2014). Vanny K., Levy M. & Hayes S. (2008) Health care for people with intellectual disability. Medical Journal of Australia 189, 90. Woods R. (2011) Behavioural concerns: assessment and management of people with intellectual disability. Australian Family Physician 40, 198–200. World Health Organization (WHO) (2010) Framework for action on interprofessional education and collaborative practice. Available at: http://whqlibdoc.who.int/hq/2010/WHO_HRH_HPN_ 10.3_eng.pdf (accessed on 10 January 2014). World Health Organization (WHO) (2011) World report on disability. World Health Organization. Available at: http:// whqlibdoc.who.int/hq/2011/WHO_NMH_VIP_11.01_eng. pdf?ua=1 (accessed on 15 January 2014).
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Journal of Applied Research in Intellectual Disabilities 2015, 28, 22–32
Health and Disability: Partnerships in Health care Jane Tracy* and Rachael McDonald*,† *Centre for the Developmental Disability Health Victoria, Monash University, Notting Hill, Vic., Australia; †Department of Occupational Therapy, Monash University, Notting Hill, Vic., Australia
Accepted for publication 23 September 2014
Background Despite awareness of the health inequalities experienced by people with intellectual disability, their health status remains poor. Inequalities in health outcomes are manifest in higher morbidity and rates of premature death. Contributing factors include the barriers encountered in accessing and receiving highquality health care. Aims This paper outlines health inequalities experienced by people with intellectual disability and focuses on the opportunities medical education provides to address these. Strategies to ensure that health professional education is inclusive of and relevant to people with disabilities are highlighted. Conclusions The barriers experienced by people with intellectual disabilities to the receipt of high-quality health care include the attitudes, knowledge and skills of doctors. Improving medical education to ensure doctors are better equipped is one strategy to address these barriers. Improving health enhances quality of life, enables engagement and optimizes opportunities to
Background This paper offers an Australian perspective on work done to develop medical education in order to improve health care provided to people with intellectual disabilities. In Australia, the provision of health care of adults with intellectual disabilities largely depends on doctors who receive little training in disability, and disability support staff who receive little training in health. The resultant gaps in understanding and responsibility are key ingredients in the recipe for the poor health care received, and health outcomes experienced, by many people with disabilities (Tracy 2010). This paper highlights medical education as a strategy to address some of these barriers to health care. Indeed, © 2014 John Wiley & Sons Ltd
participate in and contribute to the social and economic life of communities. Keywords: health care, health professional education, healthcare team, intellectual disability health, intellectual disability, medical education, multidisciplinary team Accessible Abstract People with intellectual disabilities sometimes find it difficult to get the healthcare they need to stay well. Teaching student doctors about what people with disabilities want and need can help these students become better doctors. Good doctors help people get well and stay healthy and active. When people feel well they can enjoy their lives and join in activities in their community. This article talks about some of the things doctors need to learn, and some ways to teach them. People with disabilities have a very important role in teaching student doctors.
health professional education in this field is important across the health disciplines. The health care of people with intellectual and associated developmental disabilities is inherently interprofessional and requires the contribution of professionals from a range of health perspectives. The education of students and professional development of practitioners, across all health professions, is therefore central to optimal healthcare provision. Whilst acknowledging the fundamental importance of the multidisciplinary team, this study will focus on medical education. The aims of this paper are to • Review the health inequalities experienced by people with disabilities. • Describe medical education in relation to the healthcare needs of people with intellectual disabilities. 10.1111/jar.12135
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Inform future health professional education to reduce health inequities and inequality.
Health and Health Professional Education in Australia Australia is a nation of 23 million people (ABS 2013) in a country nearly the size of the United States of America. The governance is one of a democracy with a culture of egalitarianism and a well-developed welfare system. Universal health care (Medicare) was introduced in 1975 and a National Disability Insurance Scheme commenced in 2013 (NDIS Act 2013). Over half a million Australians have an intellectual disability (AIHW 2008) and, as elsewhere in the world, they experience a disproportionately high burden of morbidity and reduced life expectancy compared with the general population (Bittles et al. 2002; Einfeld et al. 2006; WHO 2011; AIHW 2012). People with intellectual disabilities are more likely to have multiple chronic physical health conditions, experience a higher prevalence of disorders of mental health, and are less likely to access health promotion and disease prevention programmes, including cancer screening (Beange et al. 1995; Dekker & Koot 2003; Einfeld et al. 2006; Lennox et al. 2007; Access Economics 2008; Mojtahedi et al. 2008; WHO 2011; Kavanagh et al. 2012; Taggart & Cousins 2014). A recent Australian state survey (Department of Health Victoria 2011) found that people with intellectual disabilities had higher rates of unhealthy body weight, musculoskeletal pain, polypharmacy and disorders of mental health than the general population. They also had lower rates of physical activity, sun protection and cancer screening. In Australia, people with intellectual disabilities receive most of their health care from the same services used by the rest of the population: mainstream health services. However, significant barriers to access and care exist. International and national human rights and antidiscrimination legislative instruments, the National Disability Strategy, and the recently commenced National Disability Insurance Scheme confirm the rights of all Australian citizens to equity of access to community-based services, including health care (United Nations 2006a,b; Council of Australian Governments 2011; NDIS Act 2013). Medical education in Australia has not yet addressed the particular health needs of people with intellectual disability in a systemic fashion. There are no specific requirements for Australian medical graduates to © 2014 John Wiley & Sons Ltd, 28, 22–32
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develop specific competencies in working with people with intellectual and associated developmental disabilities (Australian Medical Council 2012). Instead, leadership, teaching and mentorship in this area of practice rely on the commitment of individual educators and practitioners. This has led to widely differing exposure of students to the issues of people with intellectual disabilities between medical schools. The consensus among medical professionals committed to the area, people with disabilities and the family members, friends and paid staff who support them, is that current medical training, both in Australia and elsewhere, does not adequately prepare graduates for their work with people with disabilities (National People with Disabilities & Carer Council 2009; WHO 2011; AADDM 2014). The standards required by the Australian Medical Council, the accreditation body for Australian medical schools, include graduate professional attributes in the domains of scholarship, professional practice, health advocacy and leadership (Australian Medical Council 2012). It is implicit that medical practitioners demonstrate these qualities when working with all their patients; however, this is not the experience of many people with disabilities (National People with Disabilities & Carer Council 2009). Addressing the barriers they encounter to receiving good health care through attention to the training of doctors and other health professionals has been acknowledged as a key strategy in achieving improved universal health care in Australia (National People with Disabilities & Carer Council 2009; WHO 2011). The World Health Organisation has specifically identified the training and education of health professionals as an area requiring particular focus in order to reduce barriers to health care and enable people to attain optimal health and function: ‘Education and training for health care workers about disability is an important priority to increase awareness about the health care needs of people with disabilities and improve access to services’ (WHO 2011, p. 78). The inclusion of medical education, and professional development of doctors, is a crucial component within this broader priority target.
Health Inequality and Barriers to Health Care The health status of people with intellectual disability remains poor despite increasing knowledge over several decades of the stark health disparities they experience
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(Beange et al. 1995; van Schrojenstein Lantman-de Valk et al. 1997; Hollins et al. 1998; Cooper et al. 2004; Emerson & Baines 2010; O’Hara et al. 2010). The differences in health outcomes are manifest in the increased morbidity and rates of premature death among people with intellectual disabilities (Scheepers et al. 2005; AIHW 2012; Kavanagh et al. 2012; Baxter et al. 2006; Heslop et al. 2013; Tomlinson et al. 2014). Underlying causes of disadvantage and barriers to health care experienced by people with intellectual disabilities are multiple, complex and interrelated. They include biological, psychological, social, physical, economic, educational, communication, physical and mental health vulnerabilities, and the attitudes, knowledge and skills of health professionals (OuelletteKuntz 2005; Lennox & Taylor 2008; van Schrojenstein Lantman-de Valk & Walsh 2008; Emerson & Baines 2010; O’Hara et al. 2010; Katterl & Bywood 2011; WHO 2011). Emerson (2011) identifies five key factors in the health inequalities of people with disabilities and one of is poor access to healthcare provision. The others relate to the social determinants of poor health, the intrinsic health vulnerabilities, communication difficulties and level of heath literacy and lifestyle risk factors (Emerson 2011). Australian primary healthcare research has shown a lack of knowledge about treating people with disabilities (Katterl & Bywood 2011). Medical practitioners have acknowledged their lack of training in working with people with intellectual disability and expressed interest and willingness to engage in continuing medical education in this area (Lennox et al. 2004; Phillips et al. 2004). Barriers that can be addressed through medical education and training include health professional attitudes, knowledge and skills. Areas worthy of specific attention include the development of the ethical basis of healthcare provision including social justice, beneficence and equity; attitudes reflecting value and respect for each individual; knowledge of general medicine and the implications of disability for health care; sources of further information and support for ongoing learning; appreciation of the legal and ethical foundations for care; understanding of communication in all its forms; skills including effective communication with people from diverse backgrounds; ability to work in partnership with family, paid carers, and professionals from various health and social disciplines; and an appreciation of the complex, interrelated nature of health and social issues in the lives of people with
disabilities. There is also a pressing need for education around the benefits and use of available tools and information to improve care, such as healthcare guidelines, structured comprehensive health assessments and health checks (Baxter et al. 2006; Royal College of General Practitioners 2010; Katterl & Bywood 2011; Sullivan et al. 2011; Lennox et al. 2013). People with intellectual disabilities often require more time for consultations because of the complexity of health and social concerns; communication, cognitive and physical difficulties; and the need to work with the person’s support network including family and/or paid support staff. Time pressure, on both the patient and doctor, can undermine effective communication and interventions and result in consultations focusing on acute presenting problems and other urgent issues, with less attention paid to long-term health, preventive health care, and health promotion activities (Chew et al. 2009; Taggart & Cousins 2014). An energetic, proactive approach to health care is required to address current health concerns and anticipate potential future health issues, including a focus on disease prevention and health promotion (Department of Health 2011; Lennox et al. 2013; Taggart & Cousins 2014). Such an approach to care requires the support of a health system that acknowledges the expertise and time required to work with people with intellectual disabilities, and provides structures for provision of care, and the training and support of health professionals.
Health Service Issues The health system in Australia is based on General Practitioners (GPs) providing primary care services and referring to allied health and specialist medical practitioners as required [Lennox & Eastgate 2004; Australian Government Department of Health & Ageing (DoHA) 2009]. For children with disabilities, paediatricians work with GPs to provide and coordinate health care and access appropriate health, social and other community services. Children with intellectual disabilities are known to have a much higher prevalence of chronic physical and mental health conditions (Dekker & Koot 2003; Einfeld et al. 2006; Oeseburg et al. 2011) and are supported by a well-developed infrastructure that enables access to a range of allied health services to meet their needs. Adults with disabilities also have chronic, complex health and social needs (Scheepers et al. 2005; Katterl & © 2014 John Wiley & Sons Ltd, 28, 22–32
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Bywood 2011; Sullivan et al. 2011); however, there is no accredited specialist area of practice in intellectual or developmental health in Australia, and so the provision and coordination of care rests primarily with GPs (Vanny et al. 2008; Woods 2011). There is, however, a lack of support for GPs when providing care to adults with intellectual disabilities. There are few easily identifiable networks of health professionals and services to which GPs can refer when the complexity of care is outside their experience and expertise. Particular challenges are encountered, by both patient and doctor, at times of transition (e.g. child to adult services) and when a person’s needs cross-service boundaries (disability/health, disability/mental health and disability/aged care services) (O’Hara et al. 2010; WHO 2011). The lack of professional support contributes both to the challenges experienced by GPs caring for people with intellectual and associated developmental disabilities, and to the stark health inequalities experienced by this group (National Health and Hospitals Reform Commission 2009). There are populations within our Australian community known to have complex health and social needs, including indigenous Australians, the elderly and refugees. The complexity of their health needs has been recognized and a suite of health assessments developed to guide doctors through targeted comprehensive health assessments and remunerate them for the time required (Australian Department of Health 2014a). In a move to address some of the barriers to care for people with intellectual disabilities, the Health Assessments for People with Intellectual Disabilities was added to this suite of services in 2007 (Robertson et al. 2011; Gordon et al. 2012; Australian Department of Health 2014b). The benefits of health assessments are clear. They enhance patient care and have been shown not to increase overall consultation or medication costs (Gordon et al. 2012). Proactive comprehensive health assessments have consistently led to detection of unmet health needs and targeted actions to address health needs (Baxter et al. 2006; Lennox et al. 2007; O’Hara et al. 2010; Royal College of General Practitioners 2010; Robertson et al. 2011; Sullivan et al. 2011). Most Australian states, including Victoria, now mandate yearly health assessments for people with intellectual disabilities living in state funded accommodation services (Disability Services 2013). The Comprehensive Health Assessment Profile (CHAP) (Lennox et al. 2007) is widely encouraged to guide and inform this assessment. GPs perceive the CHAP as a structured and comprehensive approach to the © 2014 John Wiley & Sons Ltd, 28, 22–32
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detection of medical problems as well as an aid in overcoming communication barriers between the doctor, the person with disability and support staff (Lennox et al. 2013).
Developing Medical Education in Disability Health in Victoria, Australia The benefits of addressing the healthcare needs of people with intellectual disability within medical student training are twofold. The first is the inherent value in improving the care, health and well-being of people with disabilities. The second is the opportunity to build the values, attitudes, skills and knowledge essential to the provision of high-quality health care to all patients with chronic and complex health and social needs, communication difficulties and the need for health advocacy and support. Structured teaching in the health care of adults with developmental disabilities in the state of Victoria first commenced in the early 1990s. Before then Victorian medical students graduated with little appreciation of the implications of intellectual disability for lifetime health, and the effect of chronic ill health on the lives of people with disabilities. Formal teaching in developmental disability had been confined to the paediatric field and graduating doctors had little exposure to or experience in providing health care to adults with intellectual and communication disabilities. These gaps in training resulted in a lack of awareness, knowledge and skill that, in turn, contributed to people with disabilities not receiving the health care they required in both community and hospital care (Iacono & Davis 2003; Iacono et al. 2004; Phillips et al. 2004; Department of Health 2011). In 1991, a joint initiative of the Victorian State Government, Monash University and the University of Melbourne led to the establishment of small academic Intellectual Disability Units within each of the two Victorian medical schools. The aim of these units was to provide both leadership and a focus for clinical, educational and research activities designed to improve health outcomes for people with intellectual disabilities in the state. Throughout the 1990s, teaching sessions were provided to students in an opportunistic fashion when curriculum time became available. In 1998, these Disability Units combined to form the Centre for Developmental Disability Health Victoria (CDDHV). In 1999–2000, both Victorian medical schools embarked upon a major review of their undergraduate medical curricula. This review created a precious
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opportunity for CDDHV staff to work with curriculum developers and ensure a focus on the health of people with intellectual and associated developmental disabilities was included within the new curricula. In one medical school, this resulted in the development of a comprehensive vertically integrated curriculum enabling concepts and practice to be built on past learning and experience. In the second medical school, the learning was less structured, but students were exposed to key issues at multiple times during their course. Since then, most graduates of these medical schools have had the opportunity to develop an understanding of the healthcare needs of people with intellectual and associated developmental disabilities during their training. Evidence-based statements on health issues, healthcare guidelines and use of structured health assessments have both informed core curriculum content and provided guidance in medical practice (IASSID 2002; van Schrojenstein Lantman-de Valk & Walsh 2008; Royal College of General Practitioners 2010; Robertson et al. 2011; Sullivan et al. 2011; Lennox et al. 2013).
People with Disabilities as Educators People with disabilities are the experts in their own experience and their involvement in the teaching and training of health professionals is essential to respectful, relevant and effective practice. Many medical students do not know someone with an intellectual or severe physical disability personally and feel uncertain about how best to communicate and work with someone with a cognitive impairment or someone who communicates without speech. Positive personal experience is a powerful way of breaking down barriers and developing increased student comfort and confidence in working with people with diverse cognitive and communication abilities (Tracy & Iacono 2008). The CDDHV has sought to work with people with disabilities in the development and implementation of medical student teaching. People with intellectual and physical disabilities are employed as both tutors and presenters in teaching sessions. In working with medical students to assist them meet learning objectives relating to skills in communicating with people with expressive and/or receptive language difficulties, young people with disabilities also meet their own learning objectives of self-advocacy, public speaking, teaching and employment.
People with physical and intellectual disabilities are also part of the collaborative team when teaching resources are designed and developed. For example ‘Health and Disability: Partnerships in Action’ (Tracy et al. 2008), an interactive interprofessional multimedia teaching and learning resource, was developed through a collaboration between six people with disabilities and their support networks, and a multidisciplinary group of health professionals and educators. The resource provides a personal context for student learning and focuses both on health issues for people with a disability and on interprofessional practice. It forms the foundation for most of the Centre’s educational activities.
Ensuring the Inclusion of Disabilityspecific Information in Medical Curricula In 1999, Lennox and Diggens published their survey of Australian medical schools and concluded that ‘medical schools differ widely in the amount of teaching offered and this is influenced by the presence of academic appointments in intellectual disability’ (Lennox & Diggens 1999, p. 333). Unfortunately, this remains the case today. There are no specific requirements for all medical schools to develop systems to ensure the needs of this particular vulnerable population are addressed within the medical curriculum (Australian Medical Council 2012). Content development and delivery in this area therefore still depends on individual ‘champions’ within medical schools. There is great competition for time within medical courses. To ensure the needs of people with intellectual and associated developmental disabilities are addressed, teaching sessions and resources must be seen by curriculum decision makers as having wider relevance to population health issues (for example disadvantaged populations, cost of health care); being responsive to social, legislative and policy change (Human Rights discourse, UN Conventions, National Disability Insurance); addressing current national health priority areas (mental health, dementia, obesity) and related policy (chronic disease management, electronic health records); applying to curriculum areas earmarked for emphasis (interprofessional education, ethical and professional behaviour); providing opportunities for integration of curriculum across medical discipline boundaries; and building desired graduate attributes. A focus on the health care of people with intellectual and associated developmental disabilities provides an effective and relevant platform for teaching, learning and experience in all the above areas. © 2014 John Wiley & Sons Ltd, 28, 22–32
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Specific learning objectives associated with teaching sessions in Developmental Disability Health in Victoria are constantly evolving in order to remain current, relevant and achieve priority in competition for curriculum time. Overarching objectives, however, remain stable and seek to ensure medical graduates have opportunities to apply graduate attributes required by the Australian Medical Council (2012) for the graduate doctor to be scientist, scholar, practitioner, health advocate, professional and leader can be applied to the care of people with intellectual disabilities. Broadly, learning objectives on which CDDHV curriculum components are designed seek to enable students to: • Appreciate current inequities and discrimination in healthcare access and provision, and their manifestation in physical and mental health outcomes. • Build the attitudes, knowledge and skills required to provide high-quality comprehensive health care to people with complex health and social needs, including those with disabilities. • Recognize the legal and ethical frameworks within which medicine is practised, and how these relate to the care of people with intellectual disabilities. • Include people with disabilities and the family members, disability workers and advocates who support them, in the identification, assessment, management and monitoring of physical and mental health conditions, healthcare decision-making, and the implementation and evaluation of interventions. • Identify strategies to minimize the barriers to highquality health care experienced by people with intellectual disabilities, including strategies for effective communication, and to provide health advocacy as required. • Understand the fundamental importance of multidisciplinary partnerships and teamwork in health care. These partnerships include those with the patient, family, disability staff, medical specialists and allied health professionals. • Develop knowledge of community services and information sources in the health, disability and social sectors to identify sources of professional information and support and to develop referral networks. Core competencies built through focusing on the health care provided to people with intellectual and associated developmental disabilities are applicable to many other vulnerable patient groups. These general competencies include the knowledge and skills required to work effectively with people who have chronic and complex © 2014 John Wiley & Sons Ltd, 28, 22–32
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needs; cognitive and communication difficulties; carers and advocates; and those who experience social and financial disadvantage and marginalization. Generally applicable competencies also include working collaboratively in healthcare teams and knowing how to source information, appropriate services and professional support. Specific competencies relate to appreciating health risks, vulnerabilities and issues associated with particular disabilities, such as Down syndrome or cerebral palsy. An understanding of the common disabilities and their implications for health and health care is required, as is the knowledge of where to source information about less common conditions. Providing opportunities for students to work with, and be taught by, people with intellectual and other developmental disabilities are, in our view, essential elements of medical education. Such firsthand experience with people with disabilities and those who share their lives is crucial to the design and delivery of curriculum to ensure the issues covered are relevant, and students build positive and respectful attitudes. The maxim ‘assessment drives learning’ certainly applies to medical students and/or Centre makes every effort to submit examination questions for both formative and summative examinations so students continue to see the teaching as valued and relevant to their course and their practice. The present authors continue to work towards a time when all medical graduates have the attitudes, knowledge and skills to enable them to contribute to meeting the interdependent health and social needs of people with intellectual and associated developmental disabilities.
Specialist Training Programmes After graduation, Australian medical practitioners enter training programmes for their chosen area of medical practice. Until recently the training programmes, overseen by the specialist colleges, have not included specific competencies in the care of people with intellectual disabilities within the learning objectives for trainees. Now, however, both the Royal Australian College of General Practitioners and the Royal Australian and New Zealand College of Psychiatrists include such competencies. The 2011 Curriculum for the Royal Australian College of General Practitioners (RACGP) included a specific chapter on disability, stating ‘People with disability make up a significant part of most general practice populations. These people may have multiple comorbidities, and GPs have
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a key role in the management of these disabilities and associated health problems. In addition, the disability itself can be a barrier to accessing health services, and the GP will often have a role in facilitating appropriate and timely access to services, as well as providing ongoing management of health issues’ (RACGP 2011, p. 98). There are specific learning objectives identified as important at each stage of the professional life of the General Practitioner. All are relevant to the care of people with intellectual disabilities, and some focus specifically on this population group, for example, one learning objectives states that the GP will ‘Demonstrate an understanding of the health inequalities experienced by people with intellectual disability, the associated barriers to health equity and the role of the GP in overcoming these barriers’ (RACGP 2011, p. 104). Likewise, the Royal Australian and New Zealand College of Psychiatrists now includes professional competencies in working with people with intellectual disabilities as a part of their training programme and, in 2011, formally established a Special Interest Group in Psychiatry of Intellectual and Developmental Disabilities. These initiatives are of great importance in raising the profile of this population and clarifying the responsibility of medical practitioners to address their health needs. This responsibility implies the necessity of acquiring the specific knowledge and skills to do so effectively. It is our view that all specialist training programmes should include elements of training specific to people with intellectual disabilities, and note that the knowledge thus acquired would benefit other vulnerable patient groups.
Continuing Medical Education It takes many years for medical students to complete their training and emerge as independent practitioners. Medical courses in Australia are generally four to six years in duration, followed by at least one year postgraduate work, usually in a public hospital and then a number of years (depending on specialty and on full or part time work) of specialist training. The inclusion of a focus on the health care of people with intellectual and associated developmental disabilities is relatively recent in Victoria and the amount and quality of training in this area remains highly variable. Most doctors in current practice, therefore, have had little or no training in the health and healthcare issues of people with intellectual and other developmental disabilities.
Attending to the continuing professional development and resource needs of medical practitioners in the current workforce are areas of focus for the Centre. Staff present regularly at General Practice and other health conferences and provide professional development through the professional organizations, and within training programmes for general practice, psychiatry and paediatrics. Web resources inform and support both medical practitioners and students. In Australia, there is little opportunity for early career professionals wishing to acquire expertise and experience in working with people with intellectual disabilities within a supported clinical setting. The Intellectual Disability Physician training programme in the Netherlands is much admired by Australian doctors working in the field (Evenhuis & Penning 2009).
Responsibility for Medical Education The need to specifically address medical education in relation to the health care of people with intellectual disabilities is clear, and there have been a range of innovative teaching initiatives to engage medical students and provide learning in this field of practice (Hall & Hollins 1996; Tracy & Graves 1996; Piachaud 2004; Jain 2006; Sullivan et al. 2011; Ouellette-Kuntz et al. 2012; Jain et al. 2013). There remains, however, a dependence on local ‘champions’ advocating for inclusion of this area within medical curricula, and developing and teaching course material. Although such ‘champions’ are important advocates and enablers, the commitment to addressing the health needs of people with intellectual disability must not rely on individuals. Robust policy, resilient systems and enabling structures are required to ensure medical education responds to the needs of this important and disadvantaged population in lasting and sustainable ways. Mechanisms to ensure the sustainability of teaching in this area depend on a number of factors. Curriculum time must be allocated, appropriate learning objectives set, and teaching modes developed to engage students and facilitate learning. Committed and skilled teaching staff must be identified to lead teaching and learning in this important area of curriculum delivery, and succession plans developed through the development and mentoring of junior staff. There is a need for overarching medical school accreditation and regulatory organizations, as well as individual medical schools, to embrace this © 2014 John Wiley & Sons Ltd, 28, 22–32
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responsibility and mandate universal medical education in this area.
Working Together in Health Care Through rigorous, proactive health care, people with intellectual disabilities can be supported to maintain optimal health and function. Access to and receipt of optimal health care depends on partnerships and constructive and effective collaboration between the person with the disability, those who support them (often family or paid disability staff) and health professionals. The disability support worker is a central part of the healthcare team for many people with intellectual disabilities. Effective communication between members of the team requires mutual understanding and respect. Misconceptions, misunderstandings, gaps in knowledge and skills, and logistic barriers can undermine the establishment of effective partnerships between health and disability staff. An understanding by health professionals of the role, training and occupational context of disability support workers is crucial to the development of respectful partnerships, effective communication and efficient collaboration. A proficient team can support the achievement and maintenance of optimal health and function for people with lifelong, complex and interrelated health and social needs. Most disability support workers have little or no formal training in health care. This is incompatible with the vital role they play in monitoring the health status of, and being a health advocate for, people with intellectual disabilities. People who have significant communication impairments may initially manifest a disorder of physical or mental health through a change in their behaviour (Davis & Mohr 2004; Woods 2011; Koritsas & Iacono 2012). A disability support worker who knows the person well is likely to be the first person to notice the behaviour change and therefore plays both a primary role in identifying signs of ill health and in facilitating access to appropriate and timely health care. Support workers must then assist the person to communicate directly with the health professional; convey their own concerns to the health professional; provide information about the person’s past medical history; work with the health professional to design appropriate interventions; support the implementation of the intervention; monitor the response; and arrange review if the expected response does not eventuate. Education of disability support workers in relation to their role in health care is therefore essential to enable them to play their part in the healthcare team. © 2014 John Wiley & Sons Ltd, 28, 22–32
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It is vital that the medical practitioner engages with both the person with the disability and, where appropriate, disability support staff, as partners in the healthcare team. Education of the health professional about the role, responsibilities and training of disability staff is important to facilitate a respectful and effective partnership. Health professionals and disability workers can, together, support someone with an intellectual disability to maintain optimal physical and mental health, function and well-being, and so be able to take advantage of opportunities for social and economic participation in their communities. This study has focused on the education of medical practitioners, but it is crucial to emphasize the importance of a multidisciplinary approach to health care. No one health professional can address all the health and social issues of people with multiple and chronic needs, including people with intellectual disabilities. The perspective and expertise of a range of health professionals is needed to understand and address current and future concerns; and a multidisciplinary team is therefore essential to provide comprehensive and holistic health care. A healthcare team comprising health professionals from relevant disciplines can address multiple contributors to ill health and functional loss, and to factors essential to achieving and maintaining optimal health. Developing skills in multidisciplinary collaboration in healthcare teams is fundamental to the practice of good health care (WHO 2010, 2011).
Conclusions People with intellectual disabilities continue to experience multiple barriers to the receipt of highquality health care. These barriers include the attitudes, knowledge and skills of doctors. Strategies to reduce barriers to health care, therefore, include the education of doctors and other mainstream health professionals. The establishment of pathways for acquisition of additional knowledge and expertise for those wishing to specialize in this area of practice is also required. Inclusion of educational activities that include people with disabilities both ensures the knowledge and skills acquired are relevant and appropriate, and influences the attitudes of health professionals in training. The provision of health care to people with intellectual disabilities requires effective, respectful three-way collaboration between the individual, their support network (including disability workers and/or family members) and their healthcare professionals. This
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triadic interaction occurs within the context of a legislative, policy and service delivery framework. Factors at any part of this framework can facilitate or undermine effective healthcare provision. Legislators, policy-makers, regulators of medical education, curriculum developers and designers within medicals schools, and health professional organizations all have a role in ensuring specific and targeted attention is paid to the training of medical and other health professionals in this area of practice. The provision of good health care to adults with intellectual disability could address many conditions that cause pain, discomfort, functional loss and premature death. Attention paid to improving health outcomes of this vulnerable group will enhance the quality of life for the individual and their family and optimize the opportunities for people with intellectual disability to live rich and engaged lives and participate in the social and economic life of their families and communities.
Acknowledgments The Centre for Developmental Disability Health Victoria is funded by the Department of Human Services, State of Victoria, Australia.
Conflict of interest Nil.
Correspondence Any correspondence should be directed to Jane Tracy, Centre for Developmental Disability Health Victoria, Monash University, Building 1, 270 Ferntree Gully Rd, Notting Hill, Vic. 3168, Australia (e-mail: jane.tracy@ monash.edu).
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