Attending to the Health Needs of People with Intellectual Disability: Quality Standards

Attending to the Health Needs of People with Intellectual Disability: Quality Standards

By: Jean O’Hara

 

 

Introduction

            The journal authored by O’Hara was published by Salud Publica Mexico in 2008. The paper seeks to address the issues in health care and health promotion among people with intellectual disability. According to the author, people with intellectual disabilities are among the most vulnerable groups in society. These people are faced with different challenges that make health care and health promotion difficult. People with intellectual disability are often socially excluded, discriminated and isolated. The author argued that a successful public health strategy that aims to improve the lives of people with intellectual disability must put emphasis on their particular health profile. According to O’Hara (2008), ‘health targets, quality standards and outcome measures must attend to their needs, for the measure of civilization is how well we treat those who are deemed more vulnerable and less able in society’ (p. 154).

 

            This paper aims to present information and data regarding how health needs of people with intellectual disability are addressed in the United Kingdom. Through research, the author aims to clearly present the different issues in healthcare and health promotion among people with disabilities and how different groups are addressing these issues.

 

Definition of Health

            Health as defined by the World Health Organization (WHO) in 1946 is a state of complete, mental, and social well-being, not merely the absence of disease or infirmity. Presently, researchers incorporate the term ‘wellness’ to health. Wellness is defined as a harmony or balance across multiple dimensions of living such as mental, social and spiritual (Krahn et al 2006). Mental health is defined by World Health Organization as a state of well-being in which every individual realizes his or her potential, can cope with the normal stresses of life, can work productively and fruitfully, and is able to make a contribution to her or his community (2008).

 

Intellectual Disability

            The World Health Organization (WHO) according to O’Hara (2008) estimates that there are as many as 100 million people with intellectual disability. Intellectual disability (or learning disability, mental retardation) is characterized by a reduced level of intellectual functioning which results in diminished ability to adapt to the daily demands of the normal social environment (Jenkins et al 2002). Intellectual disability includes the presence of :

• A significantly reduced ability to understand new or complex information, to learn new skills (impaired intelligence)


• A reduced ability to cope independently (impaired social functioning)


• Started before adulthood, with lasting effect on development (Valuing People, Department of Health 2001).

 

Health Problems

            People with intellectual disability compose a diverse group. There are different causes of learning disability and that are a far wider range of direct and indirect consequences for the health and wellness of this group. In order to make health care and health promotion more effective it is necessary that the diseases, conditions and susceptibilities that seem to be particularly prevalent among people who have intellectual disability be analyzed. According to Pitetti and Campbell (1991); Rimer et al (1994) people with intellectual disability have a high risk of certain physical and neurological conditions but many health problems are indirect consequences, resulting from the social, economic and employment restrictions that intellectual disability often brings. The UK Disability Rights Commission published a detailed exploration of health problems of people with intellectual disability. 

 

Higher Mortality Rates

            According to Oullette-Kuntz et al (2004) and NHS Health Scotland (2004) people with intellectual disability have an increase risk of premature death compared with the general population and that mortality rates are particularly high for those with more severe impairments.

 

Infections

            Infections continue to play a disproportionate role in the mortality of people who have intellectual disability. The risk of death from respiratory infection appears to be about 8-10 times higher for people who have intellectual disability, at least among those living in an institutional setting (Carter and Jancar 1983). According to NHS Health Scotland (2004) the main cause of death for people with intellectual disability is respiratory disease, linked to pneumonia, swallowing and feeding problems and gastro-oesophageal reflux disorder (cited in Disability Rights Commision 2004). People who have a profound level of intellectual disability are considerably more at risk from respiratory disease that are individuals in the mild or severe categories. According to Chaney et al (1979) 75 per cent of people who have profound learning disability die from this cause compared with 58 per cent of those who have a lesser degree of intellectual disability.

 

Cardiovascular Disease

            Cardiovascular disease is a health risk for people with intellectual disability (Cole et al 1994). Compared to the general population, people (aged) with intellectual disability are more likely to develop cardiovascular disease (Evenhuis 1997).

 

Vision and Hearing

            People with intellectual disability are also found to be at risk of vision and hearing impairments. In a study conducted by Aitchison et al (1990) they found out that 59 per cent of 367 patients in two mental handicap hospitals in Bristol, England, had one or more eye abnormalities. Two US studies report a high level of conductive hearing loss due to impacted earwax among adolescents and adults who have intellectual disability (Brister et al 1986; Crandell and Roeser 1993).

 

Barriers to Promotion

Social Exclusion

            Many people with intellectual disability have little choice or control in their lives. Their health care needs often go unmet. Intellectually disabled people are also socially isolated. Most of them are unemployed and heavily dependent on social security benefits (Valuing People, Department of Health 2001).

 

Unmonitored Community Care

            The majority of people who have severe learning disabilities become known to service providers through their need for secondary and tertiary care as a result of associated multiple health problems (Moss et al 1993). Although local authorities are required to keep a register of intellectually disabled clients, registration is voluntary (Thompson and Mathias 1999). It is extremely likely that only those people who have profound learning disabilities and who are known to service providers are registered with local authorities, leaving an unknown prevalence of mild to moderate learning disability in the community, with under-identification of need leading to inadequate service provision (Kerr et al 1996).

 

Promoting Health

            Health promotion is defined by the World Health Organization (1984) as the process of enabling people to increase control over and to improve their health. The elements of health promotion according to Tannahill (1985) are health education, prevention and health protection.

1. Health Education – health education is communication activity aimed at enhancing well-being and preventing diminishing ill health in individuals and groups through influencing the knowledge, beliefs, attitudes and behavior of those with power and of the community at large (Tannahill 1985). Empowerment is an important part of health education.

2.  Prevention – prevention focuses on the reduction of the risk of occurrence of a disease process, illness, injury, handicap or some other unwanted event or state (Tannahill 1985).

3. Health Protection – under the health protection element are the legal or fiscal controls, other regulation or policies, or voluntary codes of practice aimed at the prevention of ill health or the positive enhancement of well-being (Tannahill 1985).

 

 

Improving the Lives and Health of Intellectually Disabled People

            Valuing People, which is the UK Government’s initiative to reduce inequality, ensure healthcare and health promotion, and ensure that people with intellectual disability become important members of the society is guided by four principles. These are Rights, Independence, Choice and Inclusion.

 

Rights

            In order to ensure that people with intellectual disability are not discriminated and do not experience inequality, the government commits itself to the enforcement of civil rights for disabled people. People with intellectual disability are bestowed with rights to education, to participate in social and national activities such as voting, to marry and have a family and to express their opinions. The government commits itself to providing comprehensive guidance for electoral administrators on helping disabled people, including those with intellectual disability, through the whole electoral process. The government also ensures that intellectually disabled people are treated with respect (Valuing People, Department of Health 2001).

 

Independence

            The government aims to promote independence among intellectually disabled people. While people’s individual needs will differ, the starting presumption should be one of independence rather than dependence with public services providing the support needed to maximize this (Valuing People, Department of Health 2001).

 

Choice

            Like other people, people with intellectual disability want a real say in where they live, what work they should do and who looks after them. The government aims to provide support to people with intellectual disability in order to make them able to make important choices and express preferences about their daily lives (Valuing People, Department of Health 2001).

 

Inclusion

            The intellectual disability policy ‘Valuing People” by the Department of Health published in 2001 is based on four principles: Rights, Independence, Choice and Inclusion. The aim of inclusion is to enable as many disabled people as possible to participate in education, training or employment. Inclusion is defined as enabling people with learning disability to make use of mainstream services and be fully included in the local community (Clegg et al 2008).

 

Developing Partnerships

            The objective of the government is to promote holistic services for people with learning disabilities through effective partnership working between all relevant local agencies in the commissioning and delivery of services.

 

 

Service Users

            Recent policy initiatives clearly acknowledge the importance of collaborating with service users in determining the nature and quality of the service they receive. This will help ensure that the service provided meets the needs of those it is intended for. Service user involvement is one of the strategies that are promoted in improving health and lives of people with intellectual disability. There are different types of service user involvement:

• The user’s opportunity to influence, coordinate and manage their own care


• The personal involvement of service users in the running and overall management of service


• Engagement of service users in the development of new services


• Use of surveys and other forms of consultation


• The use of citizen advocates

            The government promotes a person-centered approach to planning that starts with the individual and considers their wishes and aspirations. Person-centered planning is a mechanism for reflecting the needs and preferences of a person with an intellectual disability and covers such issues as housing, education, employment and leisure (Department of Health 2001).

 

            The government promotes the development of sound and effective partnerships across agencies at the very heart of service delivery (Department of Health 1999). The development of good working relationships across the different organizations that people who have an intellectual disability use, aims to ensure that the care they receive has continuity and in consistent with individual needs. Key areas of collaboration not only include nursing and health care providers but also employment, education, housing and personal social services, all of which are underpinned by the need to work collaboratively with planners and commissioners of services.

 

Carers as Partners

            The government aims to make carers more involved in the policy development and implementation at both national and local levels. It is the goal of the government to ensure that carers are treated as full partners by all agencies involved and that they are represented on the Learning Disability Task Force (Department of Health 2001).

 

Health Facilitators

            In order to improve health of people with intellectual disability, staff from local community learning disability team in each area will need to take on the role of health facilitators.  The health facilitators are responsible in supporting people with intellectual disability to access the health care they need from primary care to other NHS services. Health facilitators coordinate with general practitioners and others in the primary care team to identify the needs of the intellectually disabled patients in collaboration with colleagues from social services, education and health. Their task is to facilitate, to advocate and to ensure that people with intellectual disability gain full access to health care they need, whether from primary to secondary NHS services.

Housing

            The objective of the government is to enable people with intellectual disability and their families to have greater choice and control over where and how they live (Department of Health 2001). Housing and social services are working together to expand housing and support options. There is a collaboration between local housing authorities, the Department of Health and the Department of the Environment, Transport and the Regions in order to improve the quality and choice of housing available to people with intellectual disability and their family (Department of Health 2001).

 

Fulfilling Lives

            The objective of the government is to enable people with learning disabilities to lead full and purposeful lives within their community and to develop a range of friendships, activities and relationships (Department of Health 2001).

            The community and the government coordinates to make sure that education is within reach of people with intellectual disability. In order to ensure that these people have access to education Learning and Skills Council was established. The council is responsible for identifying the needs of young people and adults with intellectual disability. The Learning and Skills Council is required to:

• Make arrangements to ensure that young people and adults with learning disabilities have access to provision which meets their needs and, where appropriate, to additional support;


• Build equality of opportunity into its policies, programmes and actions, working closely with key equality organisations including the Disability Rights Commission;


• Have regard to the needs of learners with learning difficulties when providing work experience.

 

Transport

            The Department of the Environment, Transport and the Regions commits itself to working with people with intellectual disability and transport groups in identifying and meeting the transport needs of people with disabilities (Department of Health).

 

Leisure

             The government works with local councils in making sure that the local cultural strategies and service plans encompasses the need of people with intellectual disability (Department of Health 2001).

 

           

Conclusion

            People with disabilities need more health attention and protection. People with intellectual disability are now being protected in the United Kingdom and many organizations and bodies are helping the government in making sure that their lives, health, and conditions are improved. The focus of this paper is on the ways that different organizations coordinate with one another in order to improve the lives of people with intellectual disability. People who have intellectual disability have diminished ability to adapt to the daily demands of the normal social environment but nevertheless, they remain important parts of the community that must be protected and helped in order for them to live to the fullest. People with intellectual disability have special health needs. They are more prone to diseases and their condition often leads to other illnesses. The current government policies regarding people with intellectual disability aim to remove social exclusion and intensify the provision of health services and other services to people with intellectual disability. At present, the government, private health facilities, communities, the education sector, local government, non-governmental organizations, health providers, families and individuals with intellectual disability are working together to make life for this group more meaningful and to enable them to become successful in every aspects of their lives.

 

 

 

 

 

References

 

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