It is often the most vulnerable members of society that are at risk of health inequalities, these include the gypsy and traveller communities, black and minority ethnic communities, refugees and asylum seekers. As well as bisexual, gay, lesbian, and trans-gendered people, people with a sensory impairment, physical or learning disability and people with poor mental health (Jones, 2007).
To answer this question this essay will explore the aspects of vulnerability and history of health inequalities experienced by people with learning disabilities. The factors commonly expressed as the root causes of such inequalities will be addressed by referring to relevant research as well as the aims, objectives and outcomes of key government policies.
Due to the complexity of the term ‘learning disability’, the health inequalities linked to the lives of people with a learning disability will be approached from two perspectives. Firstly, health needs associated with the primary impairment of a learning disability will be explored, in particular issues concerning access and inclusion to primary health care services and resources. Research will be reviewed, and key findings presented, in an aim to establish how the health of people with learning disabilities compares to that of people without a learning disability.
Secondly, the health implications and relevance of socio-economic factors associated to living with a learning disability will be explored, and aspects of deprivation and poverty will be addressed. In particular, the concept of social exclusion and how it impacts on the health and social wellbeing of people with a learning disability will be addressed. In addition, the social and economic issues prevalent to maintaining and achieving good health will be explored, in particular; the impact of unemployment, low educational achievement, limited social relationships and a little or no choice with regards the provision of suitable housing.
To determine what action is required to reduce the occurrence of such inequalities, policies influential to the health and social well being of people with learning disabilities will be reviewed from deinstitutionalisation to present day. The complexity and varying degrees of health impairments encompassed under the term ‘learning disability’ are not reflected in any single definition.
The definition stated in the Government’s White Paper entitled ‘Valuing People: A new strategy for learning disabilities for the 21st Century, refers to learning disability as the presence of; a significantly reduced ability to understand new or complex information, to learn new skills (impaired intelligence), with; A reduced ability to cope independently (impaired social functioning) which started before adulthood, with a lasting effect on development (Department of Health, Valuing People, 2001: 14)
In contrast the British Institute of Learning Disabilities, 2009 (BILD), regard the terminology ‘learning disability’ simply as a label, which is convenient for the purpose of discussing and planning services. However, BILD state that people with a learning disability are people first, and that a learning disability ‘label’ is one of many belonging to an individual, and therefore does not represent the person as a whole (BILD, 2009).
The term ‘learning disability’ has carried many variations over the years, and what was once seen as an acceptable description and appropriate use of language, has changed over time, as a result of increased awareness and understanding. Many historic terms are nowadays seen as an offensive and discriminatory use of language, and as a negative representation of present day circumstances. The term or label ‘learning disability’ has been utilised as an acceptable description since 1996, following a speech to MENCAP by the then secretary for Health, Steven Dorrell (BILD, 2009).
The Foundation for People with Learning Disabilities refer that as a result of the use of differing definitions by organisations, mixed methods of diagnosis and the number of people with learning disabilities that are undiagnosed, statistics vary. The number of people in England with a learning disability was estimated at 985,000 in 2004 (cited by Institute for Health Research, Lancaster University), which equates to approximately 2% of the population. Furthermore, according to the National Statistics and NHS Health and Social Care Information Centre (2004) only 20% of adults with learning disabilities are registered with learning disability services (learningdisabilities.or.uk).
The term ‘learning disability’ refers to a lifelong condition which if not apparent from birth will start before adulthood (Reid-Galloway, 2003). The learning disability ‘umbrella’ (Foundation for People with Learning Disabilities) incorporates many health conditions, generally characteristic to genetics, developmental factors or brain damage occurring during child birth (Reid-Galloway, 2003). The extent of a learning disability varies from person to person, even among those with the same disorder or condition. The degrees of which are often referred to as mild, moderate, severe and profound learning disabilities and are often based on the assessment of intelligence quota’s or IQ’s of less than 70.
It is widely recognised that people with learning disabilities are more likely to experience inequality in many facets of their lives, compared to the rest of the population. The comments of the Prime Minister in the 2001 White Paper, (Valuing People: A new strategy for learning disabilities for the 21st Century) acknowledges that people with learning disabilities are still experiencing inequality, and refers that ‘almost all encounter prejudice, bullying, insensitive treatment and discrimination at some time in their lives’ (Department of Health, 2001:1).
Historically, there have been numerous suggestions to explain the reasons why people with learning disabilities are treated in such a way that is unequal to the rest of society. Douglas (1966) suggested that the public’s perception of disability reflects a ‘deep rooted psychological fear of the unknown, the anomalous and the abnormal’ (Barnes, 1991: 11). This particular suggestion is based on the understanding that the definition of ‘normality’ is established by an individual ‘through learning and the natural transmission of ideology and culture’ (ibid, 1991: 11). In this principle, ideology and culture refer to a widely acceptable set of norms, which are the basis of individual beliefs and perceptions (ibid, 1991).
Until the 1950’s people with learning disabilities tended to either live with family members or more commonly resided in an institutionalised capacity with other people with disabilities, living in the community was rare. The creation of the Welfare State during the 1940’s saw policies concerned with disability, move away from the harsh historical approaches to a more ‘paternalistic approach’ (Barnes, 1991: 20). This era had a major impact on the well being of disabled people, and saw the government intervene in an attempt to replace some institutions and provide alternative community based living (Barnes, 1991).
The Government White Paper entitled Better Services for the Mentally Handicapped (1971) set out a twenty year agenda, committing the Government to ‘helping people with learning disabilities live as normal life as possible, without unnecessary segregation from the community ’ (Department of Health, 2001: 17). This was to be achieved by reducing the number of institutionalised residences and increasing the independent living opportunities and the provision for care in the community. Although many of the original objectives set out in the 1971 White Paper, have been accomplished, the process is still ongoing and a holistic approach has been deployed with a view to reducing the inequality gap between the lives of people with learning disabilities and those without.
Bigby and Fyffe (2006) refer to the process of deinstitutionalisation as the main reason for the shortfall in the advancement of disability services between the 1970’s and the 1990’s. Emerson (2004) suggests that the progression of learning disability services were dominated by the closing of institutions and the application of deinstitutionalisation policies (ibid, 2006).
The closure of institutions was driven by a number of factors, Castellani (1996) and Mansell & Ericsson (1996) refer that these include ‘exposure of the abuse in institutions; legislative reform; normalisation theory; and the recognition of the spiralling costs associated with humanising institutions’ (ibid, 2006: 567).
It was envisaged that rather than living in institutions, people would receive care and support packages to enable them to live more independently and be part of the community. This process was to be achieved via the transition from institutionalisation to community based living. However ‘the absence of attention to community-based services’ resulted in some people facing homeless, no support, isolation and tackling the disabling barriers of a general needs society (Bigby et al, 2006: 568).
Without taking into account health implications as a result of lifestyle difficulties and aspects of exclusion and discrimination, people with learning disabilities have ‘greater health needs than the general population’ (Trayhorn, 2008:75) and as a consequence are; more likely to experience mental illness and are more prone to chronic health problems such as epilepsy, cerebral palsy and other physical disabilities. People with learning disabilities are also at higher risk of premature death. (Trayhorn, 2008:75)
The UK Disability Rights Commission recently undertook a research project concerning the health inequalities experienced by people with disabilities. The research reviewed data from eight million primary care records to identify whether people with learning disabilities or long term mental health issues are more likely to experience physical health implications, such as heart disease, cancer and strokes (Sayce, 2009). The research also aimed to identify the likelihood of people with a disability receiving recommended treatments for such health problems, and aimed to determine the life expectancy following the occurrence of the afore mentioned conditions (Sayce, 2009).
Liz Sayce, Chief Executive of the Royal Association for Disability Rights (RADAR) led the research in her previous job at the UK Disability Rights Commission, and discussed the findings of the research in an interview with Tom Shakespeare, from WHO’S Department on Disability and Rehabilitation.
During the interview Sayce (2009) refers that in addition to the analysis of eight million care records; ‘We did qualitative interviews with all the players in the system, people using the services, people providing the services, relatives, advocacy organizations to get a really rich picture of what were the barriers that people were facing to accessing health promotion, health assessment, treatment and what were the areas of good practise and suggestions for change. (Sayce, 2009: 060)
The research found that people with long-term poor mental health or learning disabilities were more likely than other members of society to suffer the major life threatening diseases of our time. Sayce (2009: 060) refers to ‘heart disease, stroke, diabetes, and some cancers’ as the ‘killer diseases’ (ibid), that people with poor mental health or learning disabilities are more likely to experience.
The interview also discusses that the research uncovered some completely new findings, Sayce (2009: 060) states that the research established that ‘people with schizophrenia were twice as likely to get bowel cancer’ than other members of society. Sayce (2009:060) continues, ‘this factor had not been found anywhere before to our knowledge’. In addition the research also found that ‘people were more likely to get these diseases at a young age and once they got them, they were more likely to die of them within five years’ (Sayce (2009: 060).
This research provides valuable information to support the fact that there are serious medical health consequences apparent as a result of a learning disability. Further issues concerning access and inclusion to health care services were also incorporated within Sayces’ (2009) research. It was expressed that although the United Kingdom has the reputation of maintaining a good primary health service, as a whole they are not ‘providing the right services for people who are really excluded and at real risk of developing serious health conditions and dying young’ (Sayce, 2009: 060).
LearningDisabilities.org.uk, make reference to previous findings as reported by the Disability Rights Commission (DRC), which support the view that generally people with learning disabilities have greater health risks than others. The Interim Report entitled Equal Treatment: Closing the Gap, DRC (2005) revealed that; approximately one in five of the general population is obese, compared to one in three with a learning disability.
The DRC Equal Treatment: Closing the Gap (2006), reported the following facts; in comparison to the general population, four times as many people with learning disabilities die of causes that are preventable; compared to the general public, people with learning disabilities are fifty eight times more likely to die before the age of fifty years; a person with learning disabilities is 2.5 times more likely than the general populations to have health problems (DRC, 2006, as cited by LearningDisabilities.co.uk).
In addition to the findings reported by the DRC, Trayhorn (2008) refers that in comparison to the general public, vision and hearing impairment is more likely to be found in people with learning difficulties. In terms of accessing health care services, Trayhorn (2008) considers the dilemma that people with learning difficulties typically do not seek out the general health care provisions that are provided to all, as part of the National Health Service. These include routine services such as regular cervical smear tests, and screening to protect against or which can detect in the early stages the development breast and bowel cancers (ibid, 2008).
One of the main objectives set in the cross government strategy entitled Valuing People Now: From progress to transformation (2009) which follows on from the 2001 White Paper, is to ensure that the NHS provides full and equal access to good quality healthcare for people with learning disabilities. Valuing People Now (2009) incorporates the Government’s response to the ten main recommendations raised in the report Healthcare for All, which undertook an independent inquiry into access to healthcare for people with learning disabilities. It also provides further consideration to the Human Rights report; A Life Like Any Other (dh.gov.uk).
Reports by MENCAP entitled Treat Me Right (2004) and the follow up campaign Death by Indifference (2007) have been key to raising the awareness and highlighting the severity of unequal health care that people with learning disabilities have received. The2004 report by MENCAP clearly identified that serious action is required to ensure that people with learning disabilities are treated equally and decently within our care system. The 2007 report reiterates that even though awareness has been raised, health inequalities are still common place for people with learning disabilities.
Since the Treat Me Right report was published in 2004, various policies which recommend measures to reduce health inequalities in this group have been set, these include; White Paper, DH (2004), Choosing Health: making healthy choices easier, and White Paper, DH (2006) Our Health, Our Care, Our Say: A new direction for community services. The afore mentioned White Papers highlight the understanding that ‘health checks result in previously unrecognised health needs being identified earlier for people with a learning disability and on-going audits are required to sustain any health improvements’ (Trayhorn, 2008:76). In addition, The White Paper Our Health, Our Care, Our Say (2006) is aimed at giving people with learning disabilities greater choices and more control in terms of their own health and well being (DOH, 2006)..
More recently it has been acknowledged that to tackle inequalities in health, services must address the underlying sources of many health problems, which are incorporated in socioeconomic model of health (Acheson, 1998). This model identifies the main determinants of health as ‘layers of influence over on another’ (ibid, 1998: 1). Individuals are at the centre of the model along with the fixed concepts such as age, gender and ethnicity, which are factors that influence health potential (Acheson, 1998).
The next layer which surrounds the individuals are; ‘layers of influence that, in theory, could be modified. The innermost layer represents the personal behaviour and way of life adopted by individuals, containing factors such as smoking habits and physical activity, with the potential to promote or damage health’ (Acheson, 1998: 1). However, the model recognises that individuals ‘do not exist in a vacuum: they interact with friends, relatives and their immediate community, and come under the social and community influences represented in the next layer’ (Acheson, 1998: 2).
It is acknowledged that care and support within the community can sustain the health of its residents, which may otherwise have resulted in inequalities in health. Moreover, the socio economic model takes into account the wider influences of a person’s ability to maintain health, which include housing and employment conditions and access to essential goods and services (Acheson, 1998: 2).
In summary it reflects that there are the economic, cultural and environmental conditions, prevalent in society as a whole, which can in some cases result in poverty, low educational attainment, unemployment, discrimination and social exclusion (The NHS Plan, 2000, cited in Trayhorn, 2008:76).
It is widely recognised that people with learning disabilities generally have a lower social economic status, which is implied as one of the main determinants of health. This can be observed by comparing employment statistics, housing opportunities, educational achievement and limited social networks. Although these matters are being addressed via Disability Legislation and Government White Papers, it is still likely that some factors will continue to present barriers for people with learning disabilities.
The implementation of the Social Model of Disability has greatly aided the removal of physical barriers which are seen as disabling people within society, however the emotional and social factors are still of great concern. Although
there are policies in place which are aimed at preventing rather than curing, in some cases as reported by MENCAP (2004) this is sadly, too little too late.
BIBLIOGRAPHY
- Acheson D (1998) Independent Inquiry into Inequalities in Health Report. London: The Stationery Office. http://www.archive.officialdocuments.co.uk/document/doh/ih/part1b.htm (accessed 16thJuly 2009)
- Barnes, C. (1991) Disabled People in Britain and Discrimination: A Case for Anti-Discrimination Legislation London: C. Hurst ; Co. (Publishers) Ltd.
- Bigby, C and Fyffe, C (2006) Tensions between Institutional Closure and Deinstitutionalisation: What can be learned from Victoria’s Institutional Redevelopment? Disability ; Society, 21:6, 567 – 581 http://dx.doi.org/10.1080/09687590600918032 (accessed 28th June 2009)
- British Institute of Learning Disabilities (2009) http://www.bild.org.uk/05faqs_7.htm (accessed 27th June 2009)
- Department of Health (2004) Choosing Health; Making Healthy Choices Easier: Executive Summary. London: The Stationery Office
- Department of Health (2001) Valuing people: a new strategy for learning disability for the 21st century. London: The Stationery Office.
