Equality and Equity of Access to Healthcare for People with Intellectual Disabilities
This article highlights problems encountered by people with intellectual disabilities when they seek to access healthcare. Four key domains for change (practice, education, policy and research) are explored and some practical strategies for achieving change are identified.
Ruth Northway, Professor of Learning Disability Nursing, University of South Wales (UK)
People with intellectual disabilities often have poorer health than the wider population and may experience a range of barriers when seeking to access healthcare. However many of these barriers have been identified as being both modifiable and avoidable. Inequalities and inequities in healthcare have thus been identified. Promoting equal and equitable access to healthcare for people with intellectual disabilities requires a range of responses at a number of different levels involving a number of key stakeholders. Four key domains where change is required are thus explored (practice, education, policy and research) and some practical strategies for achieving change are identified. It is argued that the provision of additional support to people with intellectual disabilities is justified since it is appropriate recognition of their additional needs.
Overall the life expectancy of people with intellectual disabilities is increasing (Coppus, 2013) but their health remains poorer than that of the general population (Emerson et al, 2012) and their life expectancy remains lower than that of their non-disabled peers (Heslop et al, 2013; Hosking et al, 2016). A range of internal and external factors give rise to such a situation (Emerson et al, 2012) but one key influence is their access to appropriate and timely healthcare and the quality of the healthcare received. In the study undertaken by Hosking et al (2016) 37% of the deaths of people with intellectual disabilities were classified as being amenable to healthcare intervention compared with 22.5% of deaths amongst the general population. Access to healthcare would thus appear to be a significant factor that leads to inequalities and inequities in health and one which is amenable to change. Enhancing access to healthcare for people with intellectual disabilities is thus the focus of this paper. This will be achieved by first examining what ‘access’ means in the context of healthcare and then by exploring the concepts of equality and equity before proposing strategies via which access to healthcare may be enhanced.
Access to Healthcare
When reference is made to access to healthcare provision it is often physical access which comes to mind but for people with intellectual disabilities it is, however, much more complex than this. Goddard and Smith (2001) suggest that differences in access to healthcare between groups may arise due to availability (services may not be provided to certain groups), quality (may vary dependent upon group membership), costs (financial and other costs may vary between groups) and information (not all groups may be aware of certain services). Each of these areas would appear relevant to the situation of people with intellectual disabilities who may not, for example, be offered certain treatments or be made aware of them in a way that can be understood.
Alborz et al (2005) identify a number of factors which may affect access for people with intellectual disabilities such as the difficulties they may have with recognising that they have a health problem and communicating this to others. They may therefore be reliant upon a third party (for example their family or carers) both to recognise signs of ill health and to take appropriate action (Alborz et al, 2005; Krahn et al, 2006). If support is sought then they may experience a range of organisational barriers within the healthcare system which include scarcity of services, difficulties with physical access, a failure to make ‘reasonable adjustments’ to meet need (for example the production of easy-read materials or offering a longer appointment), ‘diagnostic overshadowing’ (whereby physical health problems are viewed as being part of the person’s intellectual disability) and negative attitudes amongst healthcare staff (Emerson et al, 2012). In addition they may encounter staff who do not have the appropriate interpersonal skills (Alborz et al, 2005) or who have poor understanding of the legal requirements regarding consent (Heslop et al, 2013).
Equality and Equity
In relation to access to healthcare for people with intellectual disabilities reference is often made to inequalities and inequities. Equality and equity are thus often defined by their absence and sometimes the two terms are used interchangeably without consideration of differences in meaning. Misunderstandings around terminology can also lead to inappropriate interventions whereby practitioners believe they are doing the right thing whereas they may be compounding the problem. If equality and equity of access are desired goals it is essential to have clarity regarding both meaning and purpose.
The need to treat people equally can be interpreted as the need to treat everyone in an identical manner. Indeed when questioned concerning their provision of services for people with intellectual disabilities some healthcare staff say quite proudly that they do not discriminate but rather treat everyone the same. However, if people have different needs then simply providing the same intervention will inevitably result in some needs not being met. Take for instance the sending out of a letter giving an appointment for an out-patients’ clinic. It could be argued that people with intellectual disabilities are respected and treated the same as everyone else by sending them a letter. However, what if the letter is received by someone who has a mild learning disability, who lives alone and who cannot read? It is unlikely that they will attend the clinic, they may not be followed up (other than via another letter) and their health needs will not have been met. Michaels (2008) in his review of healthcare provision for people with intellectual disabilities thus notes that he had to learn that treating people equally does not always mean treating them the same.
Equality and equity are related concepts since inequities arise when care of an equal quality is not provided (Whitehead, 1991). Whitehead argues that not all differences in health status are inequities but that where differences are unnecessary, avoidable, unfair and unjust then inequity exists. Applied to the situation of people with intellectual disabilities it can thus be seen that a failure to make the necessary adjustments to promote equality of access to healthcare results in inequity. Many of the difficulties relating to access discussed earlier in this paper can be seen to be modifiable in that we are aware of them and they are potentially amenable to change. They thus meet Whitehead’s criteria of being unnecessary, avoidable, unfair and unjust – if we value people with intellectual disabilities then they should be provided with the opportunity to access healthcare of a quality comparable to the rest of the population. Equity therefore has an ethical/moral dimension (Whitehead, 1991). It requires that barriers to health (such as poor access to healthcare) are identified, removed or modified since doing so is a fair and just response to historical disparities (Braveman et al, 2017).
Promoting Equality and Equity in Healthcare Access
Access to healthcare for people with intellectual disabilities is a complex issue hence promoting equality and equity within this context requires a range of responses. It is important both to enhance the capacity of people with intellectual disabilities (and those who support them) to access the healthcare system and also to ensure that the system is able to respond in an appropriate and timely manner to their needs.
Examples of positive developments can be seen such as the implementation of annual health checks to proactively identify health needs that may previously have been unmet and which can provide a baseline from which changes in individual health status can be measured (Robertson et al, 2014). Hospital passports have now been adopted in many healthcare settings to ensure that key information is provided to support safe and person-centred care for people with intellectual disabilities who may not be able to communicate key information regarding their health and support needs to healthcare staff (Bell, 2012). Many hospitals now employ specialist learning disability liaison nurses who provide specialist knowledge and expertise to support staff working in acute hospital settings (MacArthur et al, 2015). However, such provision is not universal. For example variations exist between areas in relation to the uptake of annual health checks (Glover et al, 2013), hospital passports are not always accessed by healthcare staff even where they are available (Tuffrey-Wijne et al, 2013) and even though their use is increased where hospital liaison nurses are employed not all healthcare settings have such a post (Sheehan et al, 2016). To change this situation a range of strategies is needed and hence discussion here will focus on four key areas namely practice, professional education, policy and research. These areas are inter-related but are discussed separately here to highlight the need for development in a range of domains. Table 1 summarises the main proposals for development.
Table 1 – Strategies to Promote Equality and Equity of Access to Healthcare for People with Intellectual Disabilities
· Increased awareness of barriers to healthcare which may be experienced by people with intellectual disabilities
· Increased awareness of the need for reasonable adjustments and consistent use of such strategies in practice
· Awareness of specific health needs more commonly experienced by people with intellectual disabilities
· Elimination of negative and discriminatory attitudes
· Inclusion of the needs of people with intellectual disabilities in in-service, undergraduate and continuing education programmes
· Focus on the development of positive attitudes, communication skills, awareness of legislation and enhancing competence in relation to meeting the needs of people with intellectual disabilities
· People with intellectual disabilities should be actively involved in developing and delivering such curricula
· Improved awareness of existing policy and monitoring of its implementation
· Specific reference to the needs of people with intellectual disabilities within wider healthcare policy as well as more targeted policies
· Where necessary the development of new policies
· All new policies should be assessed to determine their potential to have a greater (negative) effect on the health of people with intellectual disabilities
· Inclusion of people with intellectual disabilities in wider public health surveys to allow comparison to the wider population
· Obtaining good baseline data which can be used to determine progress towards the elimination of inequalities in health
· Ensuring that both quantitative and qualitative data is gathered
Implications for Practice
Understanding why change is required is fundamental to achieving such change. It is thus necessary for those working within the healthcare system to develop an awareness of the many barriers which people with intellectual disabilities may face and then to think creatively as to how changes can be made. At present, despite being a legal requirement under the 2010 Equality Act, the provision of reasonable adjustments is not consistent with implementation often being dependent on the knowledge of individual staff and teams and their flexibility in terms of care provision (Tuffrey-Wijne et al, 2014). Making reasonable adjustments to care delivery therefore needs to become standard practice.
Healthcare staff need to be aware of the health problems more prevalent amongst people with intellectual disabilities so that a proactive approach may be taken: even if individuals are unable to make others aware of their health needs staff can be alert to possible increased risk and monitor accordingly, hopefully leading to earlier detection and treatment. In addition the use of hospital passports should be promoted and where they are available they should be used by healthcare staff to plan and provide safe and person-centred care. Most importantly, negative and discriminatory attitudes towards people with intellectual disabilities amongst healthcare staff must be both challenged and eliminated: both conscious and unconscious discrimination contribute to inequities in health (Braveman et al, 2017).
Implications for Professional Education
A major barrier to healthcare for people with intellectual disabilities has been identified as a lack of adequate education for health professionals (Troller et al, 2016). However, despite this, current research suggests that healthcare staff may lack the appropriate knowledge, skills and positive attitudes to meet the needs of people with intellectual disabilities (Hemm et al, 2015). Particular areas of educational deficit identified relate to general communication skills, knowledge and information regarding intellectual disabilities and support services, and profession-specific knowledge (Hemm et al, 2015). The needs of people with intellectual disabilities may not even be covered within curricula with just over a half of respondents in one Australian study (Troller et al, 2016) indicating that they offered no curriculum content related to identifying and meeting such needs.
How such training is delivered is also an important consideration. A key recommendation of the Michaels Report (2008) was that not only should input relating to intellectual disability be a mandatory requirement in both undergraduate and postgraduate health professional education but also that people with intellectual disabilities should be involved in the provision of such education. Similarly Pellebor-Gunnick et al (2017) stress that both ‘contact and collaboration’ are needed with ‘experts-by-experience’ in the education of health professionals. Involvement can therefore potentially take a range of forms from the planning of educational developments to the direct delivery of teaching. It is important, however, to guard against tokenism whereby people are just passively ‘included’ without having any real or meaningful input since this will bring little benefit (Thomas et al, 2014). There needs to be involvement in planning, support and training must be provided and people with intellectual disabilities should be appropriately paid for their contribution (Thomas et al, 2014).
Nazarjuk et al (2013) and Thomas et al, (2013) provide examples of where people with intellectual disabilities have been actively involved in clinical simulation activities for nursing and medical students. In both instances such participation was viewed positively by the students involved and led to improvement in their communication skills as well as their confidence and comfort in meeting the needs of people with intellectual disabilities. Unfortunately, however, such curriculum developments are not universal and much remains to be done to promote the active involvement of people with intellectual disabilities in the education of healthcare professionals.
Implications for Policy
Some policies make specific reference to the need to enhance access to healthcare for people with intellectual disabilities (for example Department of Health, 2009). In addition legislation has been developed in order to promote better access. For example in England and Wales the 2005 Mental Capacity Act sought to reduce difficulties concerning capacity to consent and best interests decisions. The 2010 Equality Act identifies the requirement of services to make reasonable adjustments if someone is disabled and the Department of Health (2014) gave NHS England a specific target to reduce premature deaths amongst people with intellectual disabilities under the age of 60. However, inequalities and inequities in health status and access to healthcare persist and so efforts to implement existing policy and legislation should be increased and their impact must be monitored. Where additional difficulties are identified then further policy (with sanctions applied where it is not appropriately implemented) should be developed.
There are, however, wider implications of policy and legislation which need to be considered. Braveman and Gruskin (2003) argue that equity and human rights based approaches require that the impact of all policies on disadvantaged and marginalised groups is assessed since they can serve to further reinforce marginalisation, discrimination and vulnerability. Thus general health policy introduced at either a national or local level may have a disproportionate (negative) effect on people with intellectual disabilities if their needs are not given explicit consideration. For example, if it were decided that receptionists would be withdrawn in outpatients’ clinics and that patients would have to book themselves in via computer and then have to wait until their name came up on the screen to see the doctor, this could have a greater (negative) effect on people with intellectual disabilities than on other patients.
Implications for Research
Whitehead (1991) argues that if inequities in healthcare are to be addressed it is important that information is gathered regarding the extent of the problem(s), that interventions are both monitored and evaluated, and that the experience of such interventions and their acceptability needs to be understood. Similarly Braveman et al (2017) argue that achieving equity requires constant effort and that measurement is not a luxury if accountability for reducing them is to be maintained. In relation to people with intellectual disabilities, however, their absence from many public health surveys has been noted meaning that comparisons with the general population are limited (Linehan et al, 2009). As noted previously some positive developments can be seen such as the introduction of health checks. However, simply increasing the uptake of health checks must not be seen as the only goal – what is important is the identification of health needs and the extent to which they are subsequently addressed in an appropriate and timely manner. In addition a health check could be performed but in a manner which is not respectful of the person with intellectual disabilities and hence the need to supplement quantitative data with qualitative data concerning perceptions and experiences should be not overlooked (Braveman and Gruskin, 2003).
That people with intellectual disabilities experience greater difficulties in accessing healthcare appropriate to their needs has been recognised for some time and measures have been put in place to address this problem. However, differences remain and continued efforts are required if real change is to be achieved. Central to such developments is an understanding that rather than providing services which are the same as those generally provided there is a need to promote access to services of an equal quality. To achieve this there is a need to recognise that many of the differences which currently exist are not an inevitable consequence of disability but rather they are avoidable and unjust. Promoting equity of access must therefore be the aim and this requires that healthcare provision is responsive to the additional needs which people with intellectual disabilities may experience: reasonable adjustments are required along with action at a range of levels involving all key stakeholders.
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This article was first published on this site in 2011 and was revised in August 2017.