Published for the British Institute of Learning Disabilities
289
Journal of Applied Research in Intellectual Disabilities
Plenary Abstracts Supported decision-making: for prime ministers only? M. Schulze ([email protected]) Independent Human Rights Consultant, Vienna, Austria With the Convention on the Rights of Persons with Disabilities (CRPD) in force in a majority of the world’s countries, the necessity to frame human rights inclusively and accessibly is firmly established. The move from wanting to ‘fix’ people by focusing on perceived medical deficits to needing to ‘fix’ societies by reducing attitudinal barriers is underway. Enabling persons with disabilities is comparatively easily done on an individual basis. The negotiation of the Convention itself is a case in point on how processes can shift quite dramatically, when the meaningful participation of persons with disabilities is made possible. But: How does one shift from well-tested routines and carefully planned and well-intentioned procedures to an approach that empowers people to live independently? How does one move from ‘cotton-wooling’ people to embracing their need – and right – to make mistakes, go overboard and transgress? A core expression of the right of all persons with disabilities to equally enjoy all human rights is the right to act their legal capacity. The application of this provision (Article 12 CRPD) raises some profound challenges in enabling the decision-making of persons with disabilities. But does it really?: Granted: there is a need for more assistance, increased support and added resources. But is there really such a difference in what we describe as supported decision-making for persons with disabilities to what ‘mainstream’ people practice every day? How, exactly, is the process of a prime minister being advised by an army of advisers different from supporting the decision-making of someone who has an intellectual impairment? Not wanting to diminish the responsibilities of prime ministers: it appears that we are all too easily pushing the decision-making of persons with disabilities into a special realm with separate rules and different standards, which are also linked to status and its attached economic might. The idea of inclusion is not just enabling persons with disabilities to be equal. The challenge lies in questioning the ways in which the mainstream operates routinely and how persons with disabilities – due to being labeled ‘different’ and ‘special’ – are missing out. While not perceived as support in decision-making, few people make bigger decisions without consulting ‘someone.’ The social and cultural codes that are applied are frequently denied to persons with disabilities, particularly in segregated settings. Guardianship, while well intentioned and often reasonably applied, creates and reinforces stigma. The CRPD provides an opportunity to revisit engrained routines and questions well meaning policies. In the revision process a core obligation of the CRPD has to be upheld and implemented: ensuring the meaningful participation of persons with disabilities at every stage (Article 4 (3) CRPD). Its application fundamentally changes the conversation, it also improves the quality of the outcome in immeasurable ways. The CRPD is not a special set of provisions for persons with disabilities: it is firmly grounded in the human rights obligations that precede it. Importantly, the right to act legal capacity is also enshrined in the Convention on the Elimination of All Forms of Discrimination Against Women. If one ponders the significant changes that women’s liberation has brought across the globe – and not withstanding the manifold gaps – one gleans the profoundness of the paradigm shift that is encapsulated in the right to act legal capacity. The support for decision-making of those in power, e.g. prime ministers, should be our guiding light in ensuring the empowerment of persons with disabilities to make their own decisions – including: mistakes!
policy learn from explanations of and struggles against inequality? Here, it will become apparent that educational equality policies play a pivotal role in realising inclusive policies in Europe, but are also not sufficient to adress the complexity of the issue. In my conclusion I would like to encourage disability researchers to claim disability as a challenge for the way we understand inequality today and to develop tailored interventions which are not afraid to conceptualise disability in the broader framework of the European history of capitalism and inequality.
Unlocking the determinants of successful ageing: the intellectual disability supplement to the Irish longitudinal study on ageing M. McCarron ([email protected]) Faculty of Health Sciences, Trinity College Dublin, The University of Dublin, Dublin 2, Ireland Background & Aims: On the one hand people with intellectual disability (ID) in many countries are living longer and many are living to advanced age in good health, and enjoying life. On the other hand there are concerns about the quality of that life given people with ID are more likely (compared to the general population) to lead unhealthy lifestyles and less likely to have their health problems recognized. We must all be concerned to understand how to increase opportunities for more people with ID to successfully age and to reduce the disparities that place such success at risk. Methods: The Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing (IDS-TILDA) is a large-scale, nationally representative study of people aged 40 years and over with an ID. It is the most comprehensive study on ageing in persons with ID ever carried out in Ireland, and the first to be conducted in tandem with a national population study on ageing, The Irish Longitudinal Study on Ageing (TILDA). IDS-TILDA is following the health, functional independence, social, economic and environmental circumstances of 753 people as they grow older and is reporting on how their circumstances change over a 10 year period. IDSTILDA is designed to maximise the comparability of such data with the general population (TILDA) and other well established international studies: the Health & Retirement Study (U.S.), English Longitudinal Study on Ageing (UK) and The Survey of Health, Ageing and Retirement (Ireland and Europe). Results: Among the findings were:
• • • • • • • •
Inequality, education & disability. The role of inclusive policies in school-to-work transitions L. Pfahl ([email protected]) Humboldt University, Berlin, Germany Inequality is one of the grand themes of social research and educational research. Disability studies can profit from this long-standing discussion, but they need to be contextualised within the social question of inequality research and policy. In my lecture, I will proceed in three steps: Firstly, I will ask: What is inequality? Different theories of inequality are discussed through exposing the way they conconceptualize exclusion, poverty, deprivation, but also participation and equal chances. Following this, policies aiming at abolishing or alleviating inequalities will be shown to be relevant for disability research. But they have also shortcomings in being helpful for understanding disability and ways to establish inclusionist policies. Secondly, I will ask how we can understand disability as inequality. Different meanings of disability in the context of inequality shall be discussed: disability as an articulation of social ontologies of inequality, as a cause for inequal social positioning and as an effect of inequalitygenerated discrimination. This meshwork of categories and effects has different shapes in European nation-states and needs to be taken into consideration systematically to develop disabiliy-specific understandings and strategies. It easily becomes apparent that disability can only be understood within multicausal or intersectional models of inequality, and that disability cannot be defined trivially as merely another aspect of inequality. This is so because struggles for equality within the enlightenment and liberal traditions are tied to ‘ableist’ social ontologies. Thirdly, I will ask: what can disability research and
© 2014 John Wiley & Sons Ltd
The majority of adults with an ID engaged regularly in a range of social activities; however, usually with staff or peers. Adults with an ID rarely reported concerns with growing older, not having enough money, and unfriendly or negative attitudes held by other people. Regardless of residential circumstances, adults with an ID in Ireland were not actively engaged with their communities. There were higher rates of diagnosed hypertension among TILDA participants but higher rates among IDS-TILDA participants of doctor diagnosed diabetes, emotional nervous or psychological conditions and poor self-rated eyesight. Smoking was much lower among younger IDS-TILDA participants but rates were higher for older IDS-TILDA participants than TILDA rates. 70–83% of IDS-TILDA participants (rising with age) had low levels of exercise compared to 26–33% of TILDA participants (also rising with age). Over three quarters of adults with an ID reported that they never wrote, texted, emailed or used social media tools such as Facebook to contact their family or friends. Footpath design, surfaces and building entry posed the greatest access challenges for persons with a more severe ID, and street signage and feeling unsafe were difficulties for persons with mild/moderate ID.
Discussion: As other longitudinal studies increasingly seek to include and examine differences for heath disparity, minority and low income populations, there is also a need to include people with ID. To date they have not been included because they are not easily discoverable using standard sampling frames and data collection methods. IDS-TILDA has demonstrated that through alternate viable sampling frames a representative sample is possible; that many of the same questions may be asked of people with ID as of the general population; and with the use of tested visual prompts many may answer for themselves. It is hoped therefore that the ability of IDS-TILDA to provide comprehensive and comparable data on ageing over time will influence national/local policy makers and services providers in planning and providing for the needs of this population group as they age. Similar efforts in other countries are also encouraged.
Institution, house or something in-between: the current state of deinstitutionalisation in Central and Eastern Europe ska ([email protected]) J. Si Faculty of Education, Charles University, Prague, Czech Republic Background and Aims: The United Nations Convention of Rights of Persons with Disability (UN CRPD), Article 19, spells out that supporting disabled
10.1111/jar.12102
290
people to live in the community as equal citizens is an issue of human rights. Central and Eastern European countries such as Czech Republic, Austria, Hungary, Croatia, Slovenia, Poland, and Macedonia were among the first countries to sign and to ratify the UN CRPD with Bulgaria, Romania, Moldova, Serbia and Bosnia and Herzegovina also signing within 2007. This paper will summarise the current implementation of the Convention and in particular Article 19 in Central and Eastern Europe, the current barriers and opportunities and what the future might hold. It will summarise the available data in terms of the number of people with intellectual disability still in institutions, will explore the current state of community living, and will identify some of the trends, challenges and perceived risks around implementation of the UN CRPD in these countries. Methods: Data on the situation of people with intellectual disabilities in a number of Central and Eastern European countries with regard to the development of community living will be reviewed, drawing on reports and data gathered and published as part of number of European studies including DECLOC, ANED, DISCIT, and the templates collected as part of the IASSIDD SIRG activity on policies for a good life in the community. These studies provide opportunity to analyse the impact of UN CRPD over time. The DECLOC project was completed shortly before UN CRPD was adopted by the United Nations in 2006. This project aimed to bring together the available information on the number of disabled people living in residential institutions in 28 European countries. ANED was established by the European Commission in 2008 to provide scientific support and advice for its Disability Policy Unit. The latest project DISCIT started in 2013 with aims to produce new knowledge enabling European countries and the European Union to achieve full and effective participation of persons with disabilities in society and the economy. Since 2011, members and associates of the Comparative Policy and Practice SIRG of IASSIDD have been completing templates mapping the situation of people with ID across the world, including for the Czech Republic, Hungary and Croatia. Results: One key finding has been the lack of comparable data available across different countries. Overall there have been considerable developments in last decade, but with substantial progress still needed. There has also been a trend in some countries to replace larger institutions with smaller institutions and then larger group homes etc. As such, there is still a need to convey clearly the concept of independent living and the framework of the UN CRPD. There is a need to continue the new European momentum on developing good practice in models and methods supporting community living. Challenges include issues such as the mistranslation of the CRPD, the state of the nation financially and politically, the use of EU structural funds for inappropriate purposes, lack of flexibility and harmonisation in self-directed support for independent living. Conclusions: Implications include the continued need to drive forward the process of change, and the need for states to collect comparable data to monitor the process of change. Two key issues will be considered in conclusion: whether it is possible to fast-forward through thirty years of mistakes to develop good person-centred community based services as the institutions close or whether in some way each nation needs to learn from their own mistakes in order to really develop and believe in the vision and reality of community living. The second issue will be that of keeping the process going in difficult financial times. Some examples of positive change will be presented.
Health promotion and healthcare for people with intellectual disabilities L. Taggart ([email protected]) School of Nursing & Health Research, University of Ulster, Newtownabbey, Co Antrim, Northern Ireland Recent evidence shows that people with ID are more likely to die 20 years younger, and more likely to experience coronary heart disease, respiratory problems and gastrointestinal cancers compared to their non-disabled peers. They are also more likely to experience a range of secondary health conditions.
Journal of Applied Research in Intellectual Disabilities
Many of these conditions can be prevented and/or managed more appropriately; thereby improving the persons’ quality of life, increasing longevity, and reducing care costs. The UN Convention on the Rights of Persons with Disabilities (2006) highlights the universal impetus towards ‘the highest attainable standards of health without discrimination and promotes population-based public health programmes’. However, people with ID in particular continue to be excluded from such public health programmes. Despite many exemplars of evidence-base practices in health promotion in the non-disabled population such robust evidence is lacking for the ID population. The aim of this key-note presentation is to identify the main barriers to health promotion and healthcare, and the innovative ways of overcoming them. Responding appropriately to the health inequalities faced by people with ID demands action on five strands. These five strands are inter-related but underpinned by the goals of changing attitudes, improving knowledge and understanding and developing new skills of all involved with this population. The first strand should focus upon supporting the person with ID to access their family doctor/practice nurse to receive an annual health check. After this screening a health-action-plan can be developed to promote the person’s wellbeing. Family doctor practices will need to have a system in place in order to identify people with ID and a designated link person will be required to support these healthcare professionals to communicate with this population. A second strand should focus upon greater co-operation between people with ID, their family carers, ID support staff and healthcare personnel to work together to promote the health of this population. It is each person’s responsibility to identify the risk and protective factors of this population’s health in order to empower the person with ID to make healthier lifestyle choices throughout the lifespan. Health promotion involves developing an environment that best supports good health outcomes for this population, and as such is not the sole responsibility of any one professional group. Hence this will require the education of the person with ID, family carers, ID support staff and healthcare personnel. A third strand is that people with ID should be supported to access publicly funded population-based public health programmes: for this to take place reasonable adjustments are required. Trials of new health promotion initiatives to improve health should be required to include marginalized populations. However, most of these programmes have neither recognised nor addressed the specific challenges posed by this population’s cognitive deficits, low levels of literacy skills, communication difficulties, learning styles and mobility. Thus a promising approach is for existing programmes to be adapted and evaluated by ID personnel. This has the added benefit of providing comparative benchmarks for the health gains that can be expected within an ID population. A fourth strand should focus upon people with ID who may be unable to access mainstream public health programmes, therefore more tailored and specially delivered health programmes are required that will address the barriers to healthcare that this population face. Although some exemplars of these types of programmes exist, there is a greater need for a more robust methodology and evidence-base to identify if such interventions work and their cost-effectiveness. Lastly, as publicly funded health programmes place a strong emphasis on individuals to self-monitor and self-manage their own chronic health conditions, people with ID should be included in these initiatives. This then requires trained personnel in primary healthcare and ID services, and evidence-based programmes using a range of effective health promotion strategies (i.e. user friendly material, one-to-one and/or group education sessions, flexibility, repetition, use of kinesthetic learning, role-play). Furthermore, future health promotion programmes cannot ignore the added value that digital technology can have in facilitating the self-monitoring and self-management of a range of chronic health conditions by using commercially available portable, accessible devices.
© 2014 John Wiley & Sons Ltd, 27, 289–290
289
Journal of Applied Research in Intellectual Disabilities
Plenary Abstracts Supported decision-making: for prime ministers only? M. Schulze ([email protected]) Independent Human Rights Consultant, Vienna, Austria With the Convention on the Rights of Persons with Disabilities (CRPD) in force in a majority of the world’s countries, the necessity to frame human rights inclusively and accessibly is firmly established. The move from wanting to ‘fix’ people by focusing on perceived medical deficits to needing to ‘fix’ societies by reducing attitudinal barriers is underway. Enabling persons with disabilities is comparatively easily done on an individual basis. The negotiation of the Convention itself is a case in point on how processes can shift quite dramatically, when the meaningful participation of persons with disabilities is made possible. But: How does one shift from well-tested routines and carefully planned and well-intentioned procedures to an approach that empowers people to live independently? How does one move from ‘cotton-wooling’ people to embracing their need – and right – to make mistakes, go overboard and transgress? A core expression of the right of all persons with disabilities to equally enjoy all human rights is the right to act their legal capacity. The application of this provision (Article 12 CRPD) raises some profound challenges in enabling the decision-making of persons with disabilities. But does it really?: Granted: there is a need for more assistance, increased support and added resources. But is there really such a difference in what we describe as supported decision-making for persons with disabilities to what ‘mainstream’ people practice every day? How, exactly, is the process of a prime minister being advised by an army of advisers different from supporting the decision-making of someone who has an intellectual impairment? Not wanting to diminish the responsibilities of prime ministers: it appears that we are all too easily pushing the decision-making of persons with disabilities into a special realm with separate rules and different standards, which are also linked to status and its attached economic might. The idea of inclusion is not just enabling persons with disabilities to be equal. The challenge lies in questioning the ways in which the mainstream operates routinely and how persons with disabilities – due to being labeled ‘different’ and ‘special’ – are missing out. While not perceived as support in decision-making, few people make bigger decisions without consulting ‘someone.’ The social and cultural codes that are applied are frequently denied to persons with disabilities, particularly in segregated settings. Guardianship, while well intentioned and often reasonably applied, creates and reinforces stigma. The CRPD provides an opportunity to revisit engrained routines and questions well meaning policies. In the revision process a core obligation of the CRPD has to be upheld and implemented: ensuring the meaningful participation of persons with disabilities at every stage (Article 4 (3) CRPD). Its application fundamentally changes the conversation, it also improves the quality of the outcome in immeasurable ways. The CRPD is not a special set of provisions for persons with disabilities: it is firmly grounded in the human rights obligations that precede it. Importantly, the right to act legal capacity is also enshrined in the Convention on the Elimination of All Forms of Discrimination Against Women. If one ponders the significant changes that women’s liberation has brought across the globe – and not withstanding the manifold gaps – one gleans the profoundness of the paradigm shift that is encapsulated in the right to act legal capacity. The support for decision-making of those in power, e.g. prime ministers, should be our guiding light in ensuring the empowerment of persons with disabilities to make their own decisions – including: mistakes!
policy learn from explanations of and struggles against inequality? Here, it will become apparent that educational equality policies play a pivotal role in realising inclusive policies in Europe, but are also not sufficient to adress the complexity of the issue. In my conclusion I would like to encourage disability researchers to claim disability as a challenge for the way we understand inequality today and to develop tailored interventions which are not afraid to conceptualise disability in the broader framework of the European history of capitalism and inequality.
Unlocking the determinants of successful ageing: the intellectual disability supplement to the Irish longitudinal study on ageing M. McCarron ([email protected]) Faculty of Health Sciences, Trinity College Dublin, The University of Dublin, Dublin 2, Ireland Background & Aims: On the one hand people with intellectual disability (ID) in many countries are living longer and many are living to advanced age in good health, and enjoying life. On the other hand there are concerns about the quality of that life given people with ID are more likely (compared to the general population) to lead unhealthy lifestyles and less likely to have their health problems recognized. We must all be concerned to understand how to increase opportunities for more people with ID to successfully age and to reduce the disparities that place such success at risk. Methods: The Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing (IDS-TILDA) is a large-scale, nationally representative study of people aged 40 years and over with an ID. It is the most comprehensive study on ageing in persons with ID ever carried out in Ireland, and the first to be conducted in tandem with a national population study on ageing, The Irish Longitudinal Study on Ageing (TILDA). IDS-TILDA is following the health, functional independence, social, economic and environmental circumstances of 753 people as they grow older and is reporting on how their circumstances change over a 10 year period. IDSTILDA is designed to maximise the comparability of such data with the general population (TILDA) and other well established international studies: the Health & Retirement Study (U.S.), English Longitudinal Study on Ageing (UK) and The Survey of Health, Ageing and Retirement (Ireland and Europe). Results: Among the findings were:
• • • • • • • •
Inequality, education & disability. The role of inclusive policies in school-to-work transitions L. Pfahl ([email protected]) Humboldt University, Berlin, Germany Inequality is one of the grand themes of social research and educational research. Disability studies can profit from this long-standing discussion, but they need to be contextualised within the social question of inequality research and policy. In my lecture, I will proceed in three steps: Firstly, I will ask: What is inequality? Different theories of inequality are discussed through exposing the way they conconceptualize exclusion, poverty, deprivation, but also participation and equal chances. Following this, policies aiming at abolishing or alleviating inequalities will be shown to be relevant for disability research. But they have also shortcomings in being helpful for understanding disability and ways to establish inclusionist policies. Secondly, I will ask how we can understand disability as inequality. Different meanings of disability in the context of inequality shall be discussed: disability as an articulation of social ontologies of inequality, as a cause for inequal social positioning and as an effect of inequalitygenerated discrimination. This meshwork of categories and effects has different shapes in European nation-states and needs to be taken into consideration systematically to develop disabiliy-specific understandings and strategies. It easily becomes apparent that disability can only be understood within multicausal or intersectional models of inequality, and that disability cannot be defined trivially as merely another aspect of inequality. This is so because struggles for equality within the enlightenment and liberal traditions are tied to ‘ableist’ social ontologies. Thirdly, I will ask: what can disability research and
© 2014 John Wiley & Sons Ltd
The majority of adults with an ID engaged regularly in a range of social activities; however, usually with staff or peers. Adults with an ID rarely reported concerns with growing older, not having enough money, and unfriendly or negative attitudes held by other people. Regardless of residential circumstances, adults with an ID in Ireland were not actively engaged with their communities. There were higher rates of diagnosed hypertension among TILDA participants but higher rates among IDS-TILDA participants of doctor diagnosed diabetes, emotional nervous or psychological conditions and poor self-rated eyesight. Smoking was much lower among younger IDS-TILDA participants but rates were higher for older IDS-TILDA participants than TILDA rates. 70–83% of IDS-TILDA participants (rising with age) had low levels of exercise compared to 26–33% of TILDA participants (also rising with age). Over three quarters of adults with an ID reported that they never wrote, texted, emailed or used social media tools such as Facebook to contact their family or friends. Footpath design, surfaces and building entry posed the greatest access challenges for persons with a more severe ID, and street signage and feeling unsafe were difficulties for persons with mild/moderate ID.
Discussion: As other longitudinal studies increasingly seek to include and examine differences for heath disparity, minority and low income populations, there is also a need to include people with ID. To date they have not been included because they are not easily discoverable using standard sampling frames and data collection methods. IDS-TILDA has demonstrated that through alternate viable sampling frames a representative sample is possible; that many of the same questions may be asked of people with ID as of the general population; and with the use of tested visual prompts many may answer for themselves. It is hoped therefore that the ability of IDS-TILDA to provide comprehensive and comparable data on ageing over time will influence national/local policy makers and services providers in planning and providing for the needs of this population group as they age. Similar efforts in other countries are also encouraged.
Institution, house or something in-between: the current state of deinstitutionalisation in Central and Eastern Europe ska ([email protected]) J. Si Faculty of Education, Charles University, Prague, Czech Republic Background and Aims: The United Nations Convention of Rights of Persons with Disability (UN CRPD), Article 19, spells out that supporting disabled
10.1111/jar.12102
290
people to live in the community as equal citizens is an issue of human rights. Central and Eastern European countries such as Czech Republic, Austria, Hungary, Croatia, Slovenia, Poland, and Macedonia were among the first countries to sign and to ratify the UN CRPD with Bulgaria, Romania, Moldova, Serbia and Bosnia and Herzegovina also signing within 2007. This paper will summarise the current implementation of the Convention and in particular Article 19 in Central and Eastern Europe, the current barriers and opportunities and what the future might hold. It will summarise the available data in terms of the number of people with intellectual disability still in institutions, will explore the current state of community living, and will identify some of the trends, challenges and perceived risks around implementation of the UN CRPD in these countries. Methods: Data on the situation of people with intellectual disabilities in a number of Central and Eastern European countries with regard to the development of community living will be reviewed, drawing on reports and data gathered and published as part of number of European studies including DECLOC, ANED, DISCIT, and the templates collected as part of the IASSIDD SIRG activity on policies for a good life in the community. These studies provide opportunity to analyse the impact of UN CRPD over time. The DECLOC project was completed shortly before UN CRPD was adopted by the United Nations in 2006. This project aimed to bring together the available information on the number of disabled people living in residential institutions in 28 European countries. ANED was established by the European Commission in 2008 to provide scientific support and advice for its Disability Policy Unit. The latest project DISCIT started in 2013 with aims to produce new knowledge enabling European countries and the European Union to achieve full and effective participation of persons with disabilities in society and the economy. Since 2011, members and associates of the Comparative Policy and Practice SIRG of IASSIDD have been completing templates mapping the situation of people with ID across the world, including for the Czech Republic, Hungary and Croatia. Results: One key finding has been the lack of comparable data available across different countries. Overall there have been considerable developments in last decade, but with substantial progress still needed. There has also been a trend in some countries to replace larger institutions with smaller institutions and then larger group homes etc. As such, there is still a need to convey clearly the concept of independent living and the framework of the UN CRPD. There is a need to continue the new European momentum on developing good practice in models and methods supporting community living. Challenges include issues such as the mistranslation of the CRPD, the state of the nation financially and politically, the use of EU structural funds for inappropriate purposes, lack of flexibility and harmonisation in self-directed support for independent living. Conclusions: Implications include the continued need to drive forward the process of change, and the need for states to collect comparable data to monitor the process of change. Two key issues will be considered in conclusion: whether it is possible to fast-forward through thirty years of mistakes to develop good person-centred community based services as the institutions close or whether in some way each nation needs to learn from their own mistakes in order to really develop and believe in the vision and reality of community living. The second issue will be that of keeping the process going in difficult financial times. Some examples of positive change will be presented.
Health promotion and healthcare for people with intellectual disabilities L. Taggart ([email protected]) School of Nursing & Health Research, University of Ulster, Newtownabbey, Co Antrim, Northern Ireland Recent evidence shows that people with ID are more likely to die 20 years younger, and more likely to experience coronary heart disease, respiratory problems and gastrointestinal cancers compared to their non-disabled peers. They are also more likely to experience a range of secondary health conditions.
Journal of Applied Research in Intellectual Disabilities
Many of these conditions can be prevented and/or managed more appropriately; thereby improving the persons’ quality of life, increasing longevity, and reducing care costs. The UN Convention on the Rights of Persons with Disabilities (2006) highlights the universal impetus towards ‘the highest attainable standards of health without discrimination and promotes population-based public health programmes’. However, people with ID in particular continue to be excluded from such public health programmes. Despite many exemplars of evidence-base practices in health promotion in the non-disabled population such robust evidence is lacking for the ID population. The aim of this key-note presentation is to identify the main barriers to health promotion and healthcare, and the innovative ways of overcoming them. Responding appropriately to the health inequalities faced by people with ID demands action on five strands. These five strands are inter-related but underpinned by the goals of changing attitudes, improving knowledge and understanding and developing new skills of all involved with this population. The first strand should focus upon supporting the person with ID to access their family doctor/practice nurse to receive an annual health check. After this screening a health-action-plan can be developed to promote the person’s wellbeing. Family doctor practices will need to have a system in place in order to identify people with ID and a designated link person will be required to support these healthcare professionals to communicate with this population. A second strand should focus upon greater co-operation between people with ID, their family carers, ID support staff and healthcare personnel to work together to promote the health of this population. It is each person’s responsibility to identify the risk and protective factors of this population’s health in order to empower the person with ID to make healthier lifestyle choices throughout the lifespan. Health promotion involves developing an environment that best supports good health outcomes for this population, and as such is not the sole responsibility of any one professional group. Hence this will require the education of the person with ID, family carers, ID support staff and healthcare personnel. A third strand is that people with ID should be supported to access publicly funded population-based public health programmes: for this to take place reasonable adjustments are required. Trials of new health promotion initiatives to improve health should be required to include marginalized populations. However, most of these programmes have neither recognised nor addressed the specific challenges posed by this population’s cognitive deficits, low levels of literacy skills, communication difficulties, learning styles and mobility. Thus a promising approach is for existing programmes to be adapted and evaluated by ID personnel. This has the added benefit of providing comparative benchmarks for the health gains that can be expected within an ID population. A fourth strand should focus upon people with ID who may be unable to access mainstream public health programmes, therefore more tailored and specially delivered health programmes are required that will address the barriers to healthcare that this population face. Although some exemplars of these types of programmes exist, there is a greater need for a more robust methodology and evidence-base to identify if such interventions work and their cost-effectiveness. Lastly, as publicly funded health programmes place a strong emphasis on individuals to self-monitor and self-manage their own chronic health conditions, people with ID should be included in these initiatives. This then requires trained personnel in primary healthcare and ID services, and evidence-based programmes using a range of effective health promotion strategies (i.e. user friendly material, one-to-one and/or group education sessions, flexibility, repetition, use of kinesthetic learning, role-play). Furthermore, future health promotion programmes cannot ignore the added value that digital technology can have in facilitating the self-monitoring and self-management of a range of chronic health conditions by using commercially available portable, accessible devices.
© 2014 John Wiley & Sons Ltd, 27, 289–290
