Equality and Equity of Access to Healthcare for People with Intellectual Disabilities

Ruth Northway, Professor of Learning Disability Nursing, University of Glamorgan

Abstract

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.

Introduction

The health status of people with intellectual disabilities is often poorer than that of the wider population (Emerson and Baines, 2010). Until relatively recently such differences were frequently viewed as an inevitable consequence of disability (Krahn et al, 2006) but instead they may be the result of unfairness (Leeder and Dominello, 2005).  Indeed many of the determinants of these difficulties are potentially amenable to change including access to and the quality of healthcare provision (Emerson and Baines, 2010: Krahn et al, 2006). 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.

Alborz et al (2005), referring specifically to the difficulties experienced by people with intellectual disabilities, note that the term ‘access’ may be used in two ways. First to refer to physical access to services whereby someone may be said to ‘have access’. Second it can be used to describe a situation in which a service has been successfully used in which case it has been possible to ‘gain access’.  Access thus requires not only that services are available but also that they are responsive to the needs of those who seek to use them.

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) to both 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 and Baines, 2010).  In addition they may encounter staff who do have the appropriate interpersonal skills (Alborz et al, 2005) or who are not aware of the legal requirements relating to consent (Goldsmith et al, 2008).

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.

Coursen (2009) offers a different perspective on equality, arguing that it means ‘being alike in value or having the same merit’. Such a view when applied to people with intellectual disabilities in relation to access to healthcare would stress that people with intellectual disabilities have the same value as other members of the population and that they therefore merit healthcare provision which meets their needs. They have an equal right to access healthcare and, given their additional needs, this may mean that services have to be modified in order to achieve such equality.

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 challenges us to focus research, policy and practice on those aspects of healthcare which are considered to be unfair (Ward, 2009) and to consider allocation of resources within the healthcare system (Coursen, 2009).  In relation to people with intellectual disabilities it challenges us to provide them with greater resources than the rest of the population in order to promote health since they have greater needs (Leeder and Dominello, 2005).

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 to both enhance the capacity of people with intellectual disabilities 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 found such as the implementation of annual health checks to proactively identify health needs (Emerson et al, 2010) and the provision of accessible information and other reasonable adjustments (Hatton et al, 2011). However, such developments are not universal and the support received may be dependent upon factors such as where people live, whether they or their carers are aware of additional support services and the nature of their needs. For example Emerson et al (2010) note that whilst there has been an increase in the uptake of health checks within England the average is still below 50% and there is variation between areas (30 – 55%). Such a situation is not equitable.  Krahn et al (2006) thus call for ‘systemic changes’ at ‘multiple levels’ and hence discussion 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 

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. Making reasonable adjustments to care delivery 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. Most importantly negative and discriminatory attitudes towards people with intellectual disabilities amongst healthcare staff must be both challenged and eliminated. 

Implications for Professional Education

A lack of skills amongst healthcare staff in meeting the needs of people with intellectual disabilities has been noted (Alborz et al, 2005) along with disablist attitudes (Emerson and Baines, 2010) and a lack of ability to respond to different communication needs and behavioural challenges (Ouellette-Kuntz et al, 2005). A training deficit is viewed as underpinning such problems (Ouellette-Kuntz et al, 2005) and hence there have been calls for greater consideration of the needs of people with intellectual disabilities in the curricula of healthcare professionals (Krahn et al, 2006). The need for such development has been recognised by students themselves with 93.3% of undergraduate medical students in one study (Burge et al, 2008) indicating that curriculum enhancement was required, particularly in relation to the amount of time spent with people with intellectual disabilities. Such core educational preparation should, however, be included at both undergraduate level and as part of continuing professional development (While and Clark, 2010) to facilitate awareness of changes in both policy and best practice. For example the 2005 Mental Capacity Act has given rise to major training implications for healthcare staff since practice in this area is not consistent (Goldsmith et al, 2008). 

How such training is delivered is also an important consideration. A key recommendation of the Michael 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. Such involvement can potentially take a range of forms including that of facilitator, assessor and planner and can make a unique contribution since people with learning disabilities are experts in relation to their own impairment and also in relation to what it means to use health services (Byron et al, 2005). It is important, however, to guard against tokenism whereby people are just passively ‘included’ without having any real or meaningful input. It is also important to recognise that potential trainers will themselves require training (Weeks et al, 2006) and that measures are put in place to avoid exploitation (Atkinson and Williams, 2011). 

There are examples of good practice such as those at St George’s, University of London where for a number of years people with intellectual disabilities have been employed and trained to be actors in simulated assessments in which medical students are required to take a history from, and make an assessment of, someone with an intellectual disability (Thacker et al, 2007). Taking such an approach to medical education has been found to improve the communication and observational skills of trainee doctors and to overcome some of the difficulties which often arise due to diagnostic overshadowing (Thacker et al, 2007).  Similar developments are taking place elsewhere (see for example Strydom et al, 2011) but they 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. Within England policy asks General Practitioners to keep a register of people with intellectual disabilities registered with their surgery and also to offer health checks (Emerson et al, 2010). However, Emerson and Baines (2010) note that despite such initiatives health inequalities in relation to people with intellectual disabilities persist. Efforts to implement existing policy and legislation must 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 (2008) 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. 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). Emerson and Baines (2010) stress that progress towards the elimination of inequalities in health needs to be monitored once again underlining the importance of establishing reliable baseline data against which comparisons can be made. 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). Finally the need for research in currently neglected areas such as the role of care workers and supporters in facilitating access to healthcare has been identified (Alborz et al, 2005).  

Conclusion

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.