Primary Health Care and Community Based Rehabilitation:

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Primary Health Care and Community Based Rehabilitation: Implications for physical therapy based on a survey of WCPT's Member Organisations and a literature review.

Tracy Bury, Project Manager, WCPT October 2003

Primary Health Care and Community Based Rehabilitation: Implications for Physical Therapy October 2003

Primary Health Care and Community Based Rehabilitation: Implications for Physical Therapy October 2003 Purpose: This paper aims to consider the implications for physical therapy arising from developments in primary health care, with a focus on community-based rehabilitation (CBR). It is intended as a learning resource and to facilitate further debate and development among the World Confederation for Physical Therapy's (WCPT) Member Organisations and the global community of physical therapists. It has been developed as a result of work undertaken by WCPT arising from a motion passed at the 14th General Meeting of the (WCPT) in May 1999 and ongoing work. This has included: • the circulation of a CBR discussion paper, prepared by the Africa region of WCPT, and an accompanying survey on CBR; and • a request for information on primary health care. Both of these were distributed to WCPT's Member Organisations in 2002. The responses to these consultations have been analyzed and supplemented with a review of the literature covering primary health care, CBR, policy developments, models of health care, rehabilitation, disability and physical therapy. This paper has also been developed at a time that coincides with an international review of CBR policy (see http://213.203.162.14/old_sito/english/homeenglish.htm). The paper forms part of an overall work programme for WCPT on CBR and primary health care that was approved at the 15th General Meeting of WCPT in June 2003. At the General Meeting two new policy statements were approved, a Declaration of Principle on Primary Health Care and a Position Statement on CBR, along with amendments to the Declaration of Principle on Education. These are designed to further developments in these areas of practice and support patient / client care. They are appended to this paper for ease of reference. This paper is not a WCPT policy document and as such does not state the views of the Confederation; rather it is designed to stimulate further debate. Any views expressed in the paper are those of the author and do not necessarily reflect those of WCPT. Author: Date:

Tracy Bury, Project Manager, WCPT October 2003

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Further copies of this paper can be obtained from the WCPT website or from WCPT: Kensington Charity Centre, 4th Floor, Charles House, 375 Kensington High Street, London, W14 8QH Tel: +44 (0)20 7471 6765, Fax: +44 (0)20 7471 6766 E-mail: [email protected] Website: http://www.wcpt.org

This paper should be cited as: World Confederation for Physical Therapy. (2003) Primary Health Care and Community Based Rehabilitation: Implications for physical therapy based on a survey of WCPT's Member Organisations and a literature review. WCPT Briefing Paper 1. WCPT: London.

Copyright © WCPT 2003

Primary Health Care and Community Based Rehabilitation: Implications for Physical Therapy October 2003

Primary Health Care and Community Based Rehabilitation: Implications for Physical Therapy October 2003

Primary Health Care and Community Based Rehabilitation: Implications for physical therapy based on a survey of WCPT's Member Organisations and a literature review. Contents Executive summary ...................................................................................... 1 1.0

The need for rehabilitation ............................................................... 3 1.1 1.2

2.0

Disability in a cultural context ......................................................... 5 2.1 2.2 2.3 2.4

3.0

Funding and accountability...................................................... 16 Organisation ............................................................................ 16 CBR personnel ........................................................................ 16 Multi-professional and multi-sectoral collaboration.................. 18 Evaluation of CBR ................................................................... 19

Implications for physical therapy .................................................. 20 6.1 6.2 6.3

7.0

Introduction.............................................................................. 12 Models of rehabilitation............................................................ 13 Rehabilitation provision ........................................................... 14 Physical therapy provision....................................................... 15 Assessing local needs and resource analysis ......................... 15

Community-based rehabilitation ................................................... 16 5.1 5.2 5.3 5.4 5.5

6.0

Primary health care ................................................................... 9 Community based rehabilitation .............................................. 11 Linking primary health care and CBR...................................... 12

Health services delivery ................................................................. 12 4.1 4.2 4.3 4.4 4.5

5.0

Society....................................................................................... 5 The disability movement............................................................ 6 Models of disability .................................................................... 7 Human rights ............................................................................. 8

Definitions.......................................................................................... 9 3.1 3.2 3.3

4.0

Prevalence of disability.............................................................. 3 International policy..................................................................... 3

Professional autonomy and status .......................................... 20 Physical therapy roles ............................................................. 21 Pre and post qualifying education of physical therapists......... 23

Conclusions..................................................................................... 24

Acknowledgements .................................................................................... 25 References................................................................................................... 26 Appendix 1: Selected websites of interest ............................................... 30 Appendix 2: WCPT's policy statements.................................................... 31

Primary Health Care and Community Based Rehabilitation: Implications for Physical Therapy October 2003

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Primary Health Care and Community Based Rehabilitation: Implications for physical therapy based on a survey of WCPT's Member Organisations and a literature review. Executive summary ¾ The number of disabled people is increasing steadily with only a minority receiving accessible and appropriate rehabilitation services. ¾ International policy exists to promote primary health care. In addition the protection of the human rights of individuals and the social inclusion of disabled people are embedded in international policy and legislation. ¾ How disability and disabled people are viewed affects the extent to which they are integrated into society. ¾ The terms primary health care and community-based rehabilitation (CBR) are open to interpretation, although internationally recognised statements / definitions exist. The general concepts and principles involved are generally agreed worldwide but the nature of services referred to by the terms varies internationally. ¾ There is a need for a stronger orientation towards rehabilitation in primary health care services, balanced with the current emphasis on health promotion and disease prevention. ¾ Health care systems vary worldwide. This requires a flexible, responsive and innovative approach to developing services that are reflective of local needs, environments and available resources. ¾ Physical therapy provision is insufficient for the needs of most countries, therefore service delivery models need to be developed that result in the skills and knowledge of physical therapists meeting the needs of a higher proportion of those in need. ¾ Physical therapists are able to contribute to CBR programmes through a variety of roles. ¾ Multi-professional, inter-agency and cross-sectoral collaboration is vital for the development of CBR and primary health care. ¾ The physical therapy profession needs to address the perceived lower status conferred on those who work in the community or rural settings. ¾ Physical therapy professional education needs to equip physical therapists with the appropriate knowledge and skills to work in a variety of settings as well as promoting the value of working in these settings. ¾ Physical therapists should be aware of the current international review of CBR and ready to assess and act on its implications. ¾ WCPT's new Declaration of Principle on primary health care and Position Statement on CBR, as well as the revised Declaration of Principle on education should assist the profession, and therefore client care, in developing these areas of practice.

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Primary Health Care and Community Based Rehabilitation: Implications for physical therapy based on a survey of WCPT Member Organisations and a literature review. 1.0

The need for rehabilitation

This section gives a brief overview of international policy relevant to rehabilitation, specifically as it relates to primary health care and community-based rehabilitation (CBR). It is not designed to be exhaustive or to provide a detailed critique; rather it is intended to provide contextual information. Readers are referred to the documents referenced for more detailed information.

1.1 Prevalence of disability Depending on how disability is defined there is a large variation in the reported prevalence figures. Estimates of the number of disabled people worldwide vary from 0.2% to 21% (Helander 1999; Thomas and Thomas 2002). The most frequently quoted international figure is 10% of the population (Helander et al. 1989; Leavitt 1995; Thomas and Thomas 2002; World Health Organization 1981). This stems from work undertaken in 1976 based on calculations which included a high proportion of people with slight and potentially reversible disabilities (Helander 1999). A global estimate of moderate and severe disability has been given as 5.5% (Helander 1999). Based on population and survey data it is estimated that 70% of these 5.5% live in the developing countries (Helander 1999). In the developing countries it has been cautiously estimated that there were about 234 million moderately or severely disabled people in 2000 and that this will grow to about 525 million in 2035 (Helander 1999, 2000). Not all of these people would benefit from some form of rehabilitation nor perhaps be prepared to participate. It has been suggested that there are at least 70 million who would benefit now, rising to 149 million in 2035 (Helander 1999, 2000). At present only about 3% of those who need rehabilitation in the developing countries receive any meaningful service (Helander 2000). It is estimated that 10% of children are born with or acquire a disability and of these no more than 10% receive appropriate rehabilitation (according to UNICEF cited in World Health Organization 2001a). 1.2 International policy Health promotion, prevention, rehabilitation and the social integration and equalization of opportunities for people with disabilities have been accepted policy for the United Nations (UN) and World Health Organisation (WHO) for many years, with an increasing focus on primary health care and community services. Focusing on rehabilitation and primary health care, community-based rehabilitation (CBR) is one model of service provision, which WHO has advocated for over a decade (Helander et al. 1989; World Health Organization 1994, 1995a). The participation of people with disabilities, their carers and communities has long been a guiding principle for health care policy development, planning, implementation, monitoring and evaluation (International Labour Organization et al. 2002; International Labour Organization et al. 1994; United Nations 1983, 1989b, 1994; World Health Organization 1976, 1977, 1981, 1995a, 2001c; World Health Organization and UNICEF 1978), even if is not quite a reality worldwide.

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The Alma Ata Declaration on primary health care (World Health Organization and UNICEF 1978) was enthusiastically received as a means by which "Health for All" by the year 2000 (World Health Organization 1977) could be realised. However, it was also met with criticism that it was unrealistic and too idealistic (van der Geest et al. 1990), especially from those who perhaps wanted quick fixes and tangible early results. Internationally there have been different interpretations of what primary health care is, often as a result of political intent, with a large number of varying programmes being developed in the name of primary health care. The hope of primary health care was that it would address the economic reality of health care with an increasing shift to primary disease prevention and health promotion, promoting self-reliance. Community-based health care, by and for the community, encompassing traditional health care combined with basic health services, controlled and financed by the government or private institutions, were seen as the integrated systems by which primary health care could be achieved (World Health Organization and UNICEF 1978). International groups such as the United Nations Children's Fund (UNICEF) and WHO, along with international politicians and health planners, have called for greater self-reliance at the community level with increased attention on prevention. However, this could be considered to impose a top-down expectation that may not be matched with local ownership of the concept of self-reliance (van der Geest et al. 1990; Vanneste 1997). Some consider that self-reliance can appear to equate to people being left to fend for themselves (van der Geest et al. 1990) rather than gaining ownership and a sense of control. In addition, the aspirations of many developing countries for a health care system similar to that of developed countries may risk undermining self-reliance given the criticisms of the medicalisation of health care in western society (van der Geest et al. 1990). Disability incurs both economic and social costs for society which can be reduced by effective rehabilitation and support programmes (Hammerman and Maikowski cited in World Health Organization 1981). Generally, up until now, primary health care efforts have focused on family planning, childhood immunisations, nutrition and AIDS, all of which are important in the prevention of population health problems and disability (van der Geest et al. 1990). While for many communities primary health care initiatives that focus on preventative measures will pay dividends in the long–term, the priority needs of the people are more likely to be associated with treatment and rehabilitation where, if services were available, there is the potential for immediate effect. A balance therefore needs to be struck between prevention, health promotion, treatment and rehabilitation. Rehabilitation has historically been seen as a low priority around the world due to a number of factors (Coleridge 1993; Leavitt 1995): ƒ Cost-benefit ratio of providing services to those with disabilities ƒ Under-estimation of disabled peoples’ potential to achieve ƒ Negative societal attitudes towards disability ƒ Discriminatory practices ƒ Absence of urgency – rehabilitation tends to focus on the chronic, non-communicable diseases or illnesses that do not pose a risk to others ƒ Interest of biomedical practitioners focuses on improvement and cure, which is not always feasible or realistic for rehabilitation or the 'Cure or Care' model ƒ Public policy is not influenced by those with disabilities as they represent a relatively small marginalised minority. Access to appropriate rehabilitation remains problematical. Where services do exist they are frequently centred on urban institutions (World Health Organization 1981). In addition care is

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frequently driven by health care professionals rather than people with disabilities, their carers and communities, and therefore fails to address priorities and needs from their point of view. There are many calls to increase the number of health care professionals available to provide services, including physical therapists, recognising the significant shortfalls worldwide. However, there has been limited progress in maximising the potential of that which is available for the benefit of the majority of people in need. The international review of CBR that is currently progressing aims to contribute to the further development of the CBR concept and its implementation, by identifying the basic elements essential for effective CBR, through a review of current CBR practice and experience in a variety of settings (World Health Organization 2003). The full set of background papers can be accessed at http://13.203.162.14/old_site/cbr/reviewofcbr.htm The report of the meeting should also be available from this site when available.

2.0

Disability in a cultural context

Much has been written that seeks to explore the concept of disability and its meaning for individuals and society. In addition, recent developments including the International Classification of Functioning, Disability and Health, referred to as the ICF (World Health Organization 2001b), are attempting to redress the negative way in which disability has been perceived. Rather than an emphasis on disability the shift is to focus on the abilities of disabled people. This section gives a brief introduction to the cultural context of disability, the influence of the disability movement and different models that exist in the literature. It also highlights the human rights and equalization of opportunities issues associated with disability. Again, this section is not designed to provide a detailed discussion of the issues, but to stimulate readers to think about them and explore the literature more.

2.1

Society “…disability is defined by culture, and without an awareness of how disability is perceived in the target culture, a disability programme does not stand much chance of being relevant or sustainable.” (Coleridge 2000, page 21)

Disability does not define people, society does. How disability is viewed often reflects the extent to which society embraces disability and diversity, rather than focusing on how an individual’s ability to participate to socially accepted norms might be limited. Therefore what is perceived as a disability in one society or culture may not be viewed as such in another (Gregory 1994). The extent to which the focus is on the rights of the individual, versus the needs of the population or community, will also determine how disability is viewed. While the culture of many developed countries gives predominance to the individual the same cannot be said for many developing countries (Thomas and Thomas 1999; van der Geest et al. 1990). This is not to say that one is right and the other wrong, but that society has influenced how rights are defined and needs identified and met. How acquired (especially accidentinduced) disability is seen in comparison to congenital, disease or illness-induced disability can be quite marked resulting in inequitable access to services and opportunities, and often financial support (Gregory 1994). While few can argue with the ethics of equitable health for all, consideration needs to be given to the ways in which disability is perceived in different societies, in response to a number of cultural variables, along with materialistic and economic issues. For example, different belief systems in some traditional societies give prominence to fate, karma and

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divine punishment. These suggest that the person with a disability is not in need of intervention, as the disability is a result of the natural order of life that is not within anyone’s control (Coleridge 2000). There are also the differing responsibilities that the individual assumes, depending on their status in a family or community, and the way in which any decisions are made. This is likely to impact on the extent to which the notion of empowerment (allowing, encouraging and facilitating individuals with disabilities and their families to speak and act for themselves) is appropriate or applicable (Lang 1998). In many poor communities disabled people are not seen as a priority for development and investment, an awareness of this and other cultural issues is key to any process designed to integrate disabled people more fully in society (Coleridge 2000). Understanding that culture is the sum of political, economic, social and spiritual aspirations over a period of time is essential to avoid alienation, exclusion and a loss of identity or sense of community. If changing perceptions and thinking about disability is to be stimulated then it needs to be done without undermining people’s own sense of identity (Coleridge 2000). 2.2 The disability movement The disability in need of charity and disability in need of treatment perspectives were challenged by the disability movement (disabled people themselves) with the emergence of three key ideas: • the social model of disability • independent living • civil rights movement (Oliver 1999). With the development of these issues has come a greater focus on environmental change for the benefit of a greater number of people, rather than individual based interventions (Oliver 1999). This has posed challenges for health care professionals whose work has been dominated by one-to-one interventions, with Oliver giving the warning in 1983 (Oliver 1983) that professionals must work with disabled people to develop appropriate practice, based on the social model of disability. Consumers initiated the challenge to professionally controlled rehabilitation in North America and other developed nations, which led to the emergence of the Independent Living (IL) movement. In this barriers to access and equality in service provision were principally identified as environmental and attitudinal with particular concern that the professional-client relationship facilitated dependency-inducing features in the person with a disability. In the USA and Canada IL centres developed providing peer counselling, consumer-based research, advocacy and self-help (Lysack and Kaufert 1994). There has perhaps been greater progress with social welfare issues than with rehabilitation in this approach. This might in part be related to the way in which independent living centres (ILCs) were set up by professionals, as opposed to centres for independent living (CILs) which were set up and staffed by disabled people (Oliver 1999). The term independence is one that different stakeholders would agree on, but how it is interpreted varies: • Governments see independence as developing self-reliance and reducing the burden on the state • Health care professionals focus on the ability of individuals to undertake a range of activities that enable them to be self-caring • For disabled people independence is seen in terms of personal autonomy and the ability to take control of their lives (Oliver 1999).

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One of the debates in the disability movement literature seems to be the issue of power and the answers to two key questions: ƒ Who has the right to determine how disabled people should live their lives; and ƒ Who has the legitimate right and voice in determining the priorities for the provision of disability services (Lang 1998)? Answers to these vary within different cultural and societal contexts. While the disability movement has been critical of the health care professions the professions have perhaps listened and begun some fundamental changes. Through empowering people with disabilities to be active participants and decision-makers in health care planning, delivery, individual treatment programmes and service evaluation they have acknowledged that people with disabilities are not passive recipients of perceived professional wisdom, knowledge and skills. A partnership model is therefore being progressed by all those involved. These are important developments to take heed of in considering the role of physical therapy in any health services delivery model. 2.3 Models of disability Another key debate concerning disability is the way in which the medical and social models of health have often been presented in opposition, as summarised by Lang (1998) in table 1. Table 1: Models of disability Reprinted with permission from: Lang R. (1998) Guest Editorial: a critique of the disability movement. Asia Pacific Disability Rehabilitation Journal 9(1): page 6

The Medical Model personal tragedy theory personal problem individual treatment medicalisation professional dominance expertise adjustment individual identity prejudice behaviour care control policy adjustment

The Social Model social oppression theory social problem social action self-help individual and collective responsibility experience affirmation collective identity discrimination attitudes rights choice politics social changes

It would seem that in the context of disability neither model provides a complete approach and that an integrated approach, encompassing elements from both models will best serve to meet the needs of people with disabilities, their carers and communities. This will facilitate participation and contribute to the “…process to change the social parameters of individual existence” (Cole 1999, page 2). This integrated approach does appear to have been recognised by WHO (International Labour Organization et al. 2002; World Health Organization 1998, 2001c); see also the international review of CBR papers at: http://213.203.162.14/old_sito/english/homeenglish.htm .

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2.4 Human rights Health for all and the equalization of opportunities, along with access to rehabilitation delivered in a culturally and socially sensitive manner, can be seen as basic human rights issues (Cole 1999; United Nations 1983, 1994). Cole argues that the essential human right is the right to progress, achieved through “the facility and ability to choose and participate in processes of social change” (Cole 1999, page 8 emphasis added). Ensuring that those with disabilities enjoy all aspects of human rights is embedded in international legislation and also widely at a national level. This means that the rights-based approach to disability is subject to law. The approach is designed to "…empower disabled persons, and to ensure their active participation in political, economic, social, and cultural life in a way that is respectful and accommodating of their difference" (Office of the High Commissioner for Human Rights 2003, page 2). The extent to which national implementation makes this a practical reality is variable. The human rights approach sees the problems of disability stemming from within society, not the individual. “The existing order of society, and the consequent allocation of scarce resources, necessarily engenders inequality, which reflects the power structure of society. This social status quo is ideologically justified, legitimating privilege. And hence any effective analysis of the social position and human rights of persons with disabilities in particular, and disadvantaged people in general, and the resultant questioning of the allocation of resources, will have to address the inadequacies of the extant institutional order. And hence raise questions about the ideological and cultural basis of social life. “(Cole 1999, page 13) In the context of international legislation there are a number of United Nations documents setting out international standards on human rights, along with a number of resolutions and declarations. For example see: • Universal Declaration of Human Rights (United Nations 1948) • International Covenant on Economic, Social and Cultural Rights (United Nations 1966) • Convention against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment (United Nations 1984) • Convention on the Rights of the Child (United Nations 1989a) • The Standard Rules on the Equalization of Opportunities for Persons with Disabilities (United Nations 1994) The majority of this legislation does not specifically mention disabled people, except for the Convention on the Rights of the Child and the Standard Rules. There are however, antidiscrimination clauses in place. While all the relevant human rights treaties have significant potential to improve the situation of disabled people it appears that they are under-utilised (Quinn and Degener 2002, cited in Office of the High Commissioner for Human Rights 2003). The core values of individual dignity, autonomy or self-determination, equality and the ethic of solidarity are fundamentals of human rights law that concern disability. To achieve this there is an increased focus on the participation and involvement of disabled people and their representatives, including Disabled People's Organisations (DPOs) in the development and implementation of policies and plans (Office of the High Commissioner for Human Rights 2003).

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To focus on how services are delivered and by whom risks failing to integrate the person with a disability in society. It fails to address the barriers to participation, so that while they might receive appropriate equipment and improve their mobility they may, for example, still be refused a job. Whereas an approach that recognises the rights of disabled people and puts in place comprehensive integrated policies and strategies to address these is more likely to fulfil these human rights. Providing rehabilitation and equipment would be only one part of this (Stubbs 2002). Specifically in relation to CBR, the revised draft international position statement on CBR (International Labour Organization et al. 2002) now places CBR within a human rights framework with reference to the International Covenant on Economic, Social and Cultural Rights and the United Nation's Standard Rules.

3.0

Definitions

This section outlines the differences in how the terms primary health care and CBR are used and interpreted. This is evident in the literature and in the responses WCPT received to its survey of Member Organisations concerning CBR. 3.1 Primary health care The Alma Ata definition of primary health care is the one to which governments have pledged their allegiance and it is this which has shaped the development of national policies. "Primary health care is essential health care based on practical, scientifically sound and socially acceptable methods and technology made universally accessible to individuals and families in the community through their full participation and at a cost that the community and country can afford to maintain at every stage of their development in the spirit of self-reliance and self-determination. It forms an integral part both of the country's health system, of which it is the central function and main focus, and of the overall social and economic development of the community. It is the first level of contact of individuals, the family and community with the national health system bringing health care as close as possible to where people live and work, and constitutes the first element of a continuing health care process." (World Health Organization and UNICEF 1978) Primary health care focuses on: ƒ maximum use of local resources, including traditional healers and trained community health workers ƒ participation of the individual and the community ƒ affordable and accessible care ƒ integration of prevention, promotion, treatment and rehabilitation ƒ coordination between the health care sector and other aspects of society, such as housing and education (Leavitt 1995; World Health Organization and UNICEF 1978). Prevention is usually referred to as primary, secondary or tertiary and is not limited to that which takes place in primary care settings. Primary prevention consists of measures to prevent diseases, injuries, or conditions that can result in impairments or disabilities (World Health Organization 1995a). For example, health

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education, immunization, maternal child health services, and safety promotion. It forms a major component of primary health care. Secondary prevention consists of early intervention in the treatment of diseases, injuries, or conditions to prevent development of impairments. Treatment of diseases (eg Tuberculosis) and injuries (eg fractures) may prevent impairments and hence disabilities. Treatment of this type is usually initiated by the referral services, but follow-up is provided within the primary health care system (World Health Organization 1995a) Tertiary prevention includes measures to limit or reduce impairments or disabilities, for example, surgery to correct joint deformities. Treatment is likely to reduce impairment and may also reduce or eliminate the disabilities that can result from such impairments. It also includes the treatment of disabilities and therefore rehabilitation (World Health Organization 1995a). This classification of prevention is in need of updating given developments with the ICF (World Health Organization 2001b) and the focus on maximising abilities. Rehabilitation personnel, including physical and occupational therapists and mid-level rehabilitation workers, have been identified as being well placed to facilitate the prevention of tertiary disability, whereas physicians and nurses are perhaps more familiar with primary and secondary prevention (World Health Organization 1995a). However, physical therapists have a valuable contribution to make across all levels of prevention. To only see their role at the tertiary level poses the risk of increasing the number of individuals with this level of disability requiring this type of care, rather than seeking to prevent them with earlier intervention. Rehabilitation, in some instances, has been seen as a service delivered by health care professionals, a key domain of therapists. However, as O'Toole stated: “Rehabilitation can no longer be seen as a product to be dispensed; rather, rehabilitation should be offered as a process in which all participants are actively and closely involved.” (O'Toole 1995, page 313) The recent publication of Innovative Care for Chronic Conditions: Building Blocks for Action (World Health Organization 2002) goes some way towards redressing the imbalance in service delivery that has evolved with many primary health care initiatives. This places greater emphasis on the need for health services to meet the needs arising from chronic conditions, much of which could be met in the community. This needs to be balanced with the needs for primary prevention a key driver in primary health care, as described earlier. Another view of primary health care that emerges from WCPT's consultation is the extent to which it equates to first contact practitioner status. For example, that patients / clients do not need a medical referral to receive care from a physical therapist but can consult them directly. In this instance that care can be provided in acute, primary and community settings. In the context of this paper primary health care is seen to reflect international policy and therefore services that are provided in the community.

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3.2 Community based rehabilitation Community Based Rehabilitation (CBR) has been defined by the International Labour Organization, the United Nations Educational, Scientific and Cultural Organization and the World Health Organization in a Draft Joint Position Paper (International Labour Organization et al. 2002) as follows: “Community-based rehabilitation is a strategy within community development for the rehabilitation, equalization of opportunities and social integration of all people with disabilities. CBR is implemented through the combined efforts of disabled people themselves, their families and communities, and the appropriate health, education, vocational and social services. “ CBR was designed as a model by which cost-effective community / home-based rehabilitation could be provided in developing countries (Helander et al. 1989). As defined it was not seen to equate to all rehabilitation that takes place outside an institutional setting, although it is easy to see how the term can be interpreted as such, and this is reflected in the feedback from WCPT Member Organisations. CBR, as internationally defined, is very much client-centric as opposed to profession-centric. In trying to clarify what CBR is and to draw a distinction with any care that takes place in a community environment there are a few key points. CBR is not: • An approach that only focuses on the physical or medical needs of a person • About delivering care to disabled people as passive recipients • Only outreach from a centre • Rehabilitation training in isolation • An approach which is determined by the needs of an institution or groups of professionals • Segregated and separate from services for other people (Stubbs 2002). Conversely CBR involves: Partnerships with disabled people, both adults and children, their families and carers • Capacity building of disabled people and their families, in the context of their community and culture • An holistic approach encompassing physical, social, employment, educational, economic and other needs • Promoting the social inclusion of disabled people in existing mainstream services • A system based in the community, using district and national level services for referral (Stubbs 2002; Vanneste 2001). •

CBR has been described on the basis of component features such as: • provision of functional rehabilitation services • creating a positive attitude towards people with disabilities • the creation of micro and macro income-generation • vocational training • the prevention of the causes of disabilities (United Nations Economic and Social Commission for Asia and the Pacific 1997). It has also been described on the basis of philosophical or ideological thinking (Vanneste 1997).

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Helander (1999) has identified a number of key principles relating to CBR. They are; equality, social justice, solidarity, integration and dignity. These can be seen to relate to the principles embedded in human rights legislation.

3.3 Linking primary health care and CBR As one aspect of its broad remit, CBR is a means of delivering health services in the primary health care setting and therefore the two are intrinsically linked. CBR is not an approach that only focuses on the physical or mental needs of a person and as such extends beyond the healthcare domain. However, it is also viewed by some nations as encompassing all care that takes place in the community, more analogous with the wider concept of primary health care. CBR is not the only means by which rehabilitation services can be delivered in primary health care settings. Both CBR and primary health care focus on the needs of individuals and the wider population. It is important though to understand that rehabilitation in the context of CBR extends beyond a purely medical interpretation as discussed in sections 3.2 and 5.4.

4.0

Health services delivery

WHO’s declaration of ‘Health for all by the year 2000’ (World Health Organization 1977) still remains a long way off. In 1995 the World Health Assembly (resolution WHA 48.8) urged WHO and its member states to take coordinated action to reform health care, acknowledging that fundamental change was required in approaches to health care delivery, the use of human resources and their education and training (World Health Organization 1995b). This section discusses some of the wider health service delivery issues and focuses on rehabilitation. 4.1 Introduction Differences in health status and health care systems, including rehabilitation, are significant from one country to another. However, they are most marked when comparing the developing countries with those that are developed. While the socio-economic differences are acknowledged the continually widening economic gap is seen to be the principal influencing factor (Leavitt 1995). Even though the economic resources required to provide a level of service that even goes some way to closing the gap between met and unmet need seems far from reach, as Kay et al said ‘Developing nations can ill-afford the expense of the morbidity that a failure to rehabilitate causes.’ (1994, page 77). That said, levels of morbidity tend to be higher in poorer communities and, depending on the local health care system, this means that they end up paying more when they can ill-afford to do so (Werner 1996). Within countries there are usually a number of referral levels (figure 1). Starting with community level services there is then access to district services, where district is defined as the area covered by the first-referral level hospital and also the most peripheral unit of local government and administration with comprehensive powers and responsibilities. It is seen to exist at the interface between community planning and development and central government planning and development (World Health Organization 1989, 1994). There is then a secondreferral level to provincial / regional / state services. These services, as well as providing a greater level of expertise, also provide education and supervision of rehabilitation workers at the district level. Some special schools and vocational training centres may also be located in these areas. The third level of referral is referred to as central or national services. Examples include specialty or teaching hospitals in large urban areas (World Health Organization 1989, 1994).

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Figure 1: Referral Levels

This description of services may be more recognisable in developing countries but all countries have an analogous system of increasing complexity, specialisation and multisectoral collaboration. 4.2 Models of rehabilitation Institution-based rehabilitation and outpatient services are models recognisable to most health care professionals and the ones that have historically influenced education provision. These services have been driven and developed by health care professionals. Health care reforms are seeing an increasing emphasis on service user involvement in shaping future models of health service delivery. However, this remains a relatively new concept and one in development itself. In most countries institution-based rehabilitation is urban-based, making it relatively inaccessible and expensive to access, especially in poorer communities. How disability has been perceived has influenced health care service provision, including rehabilitation. The disability movement and the development of the social model of health (see section 2) have been influential in affecting change in recent years. With a focus on community settings rather than institution-based centres, CBR is one model of providing rehabilitation, which is explored further in section 5 of this paper. There are a number of different models of CBR that have been developed in response to local needs and a number of other programmes of interventions which share some common goals, but have fundamental differences. One such programme is that referred to as out-reach. These programmes are run by health care workers e.g. physical therapists, at a local level to provide complex professional care which directly addresses patients’ pathology, impairments, and / or disabilities (Kay et al. 1994; World Health Organization 1994). Such services are controlled from an institution and there may be a mismatch between what the people need and what the institution can provide (Stubbs 2002). CBR is not the only model in which community participation is emphasised. The development of the Independent Living (IL) movement, described in section 2.2, is another. While their origin is different they both developed as a response to criticisms of the traditional rehabilitation model that was dependent on highly trained health care professionals. The essential difference between CBR and IL is that the CBR model is one of

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partnership between the community and service providers, whereas control is seen as essentially being with disabled consumers in the IL model (Lysack and Kaufert 1994). In contrast to the IL movement it is often health care professionals who speak out in support of CBR and raise its profile, whereas in IL it is principally consumer driven (Lysack and Kaufert 1994). How well this is then translated through implementation is another matter. 4.3 Rehabilitation provision In 1995 O’Toole suggested that institution-based rehabilitation was helping no more than 2% of those in need (O'Toole 1995). There is however an increasing shift away from delivering health services managed from institutional care facilities to primary health services, centred on the needs of the local community and delivered in the community. This is a focus in both developed and developing countries. Institutions are not redundant but are becoming increasingly focused on the provision of specialist services. The way in which it is developing varies from country to country with the differing funding and infrastructure systems, as well as the different social and cultural environments. A recent evaluation of the implementation of the UN Standard Rules on the Equalization of Opportunities for Persons with Disabilities (World Health Organization 2001d) found that almost 30% of countries responding did not provide national rehabilitation programmes. It also found that physical therapists and other allied health professionals are rarely available at a local or district level, being predominantly available at the national level. CBR workers were not reported as being present in developed countries. Physical therapists and other professional health care workers were seen as specialists and often only accessible at national centres, which are impractical and costly to consult. The problems of providing programmes of treatment and rehabilitation, beyond one consultation, are further magnified. The survey (World Health Organization 2001d) found that primary health care has become the focus of delivering services to villages and poor urban areas. Forty-four countries reported providing community-based rehabilitation in these settings. However, estimates suggest that almost 50% of countries are only providing rehabilitation for 20% or less of the population. Where rehabilitation services are provided they appear to focus on mobility problems and less so on other needs. Primary health care and CBR were both reported as mechanisms by which rehabilitation is delivered. While there has been progress in involving people with disabilities through CBR or as teachers, instructors and counsellors, they are less likely to be involved in the design, organisation or evaluation of rehabilitation programmes. The survey (World Health Organization 2001d) also investigated the inclusion of disability issues in the training curriculum of health care professionals. Concern was expressed at the number of countries where this was not provided for doctors, nurses and primary health care workers. On the contrary, physical therapy performs well in this area, with only 7 countries reporting that it is not a component. However, this should still be rectified. While the survey found that children are generally well provided for the needs of adults and the elderly are not well catered for despite the significant risks of disability associated with age and socio-economic and political circumstances (World Health Organization 2001d). Some rehabilitation services focus on a defined client group, such as those with multiple sclerosis, often reflecting financial backing from a Non Governmental Organisation (NGO), or a particular type of functional limitation, such as visual, in isolated settings. What such programmes need to ensure is that they provide for physical, sensory, mental, spiritual, emotional and social needs, taking a holistic approach.

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Access to rehabilitation is often dependent on a medical physician’s referral, who may only be based at a national or provincial level, thereby potentially denying those in need of rehabilitation who do not have access to a physician. It may also be dependent on the extent to which that physician has been given rehabilitation-orientated training (Kay et al. 1994). 4.4 Physical therapy provision The difficulties in realising a primary care orientated vision are numerous. In terms of physical therapy many developing countries have insufficient numbers of physical therapists to operate at a local level and they are mainly located in national or provincial centres and, to a lesser extent, district services (World Health Organization 1995a). For example, in developed countries the average physical therapist to population ratio is 1:1400 compared to an estimated average of 1:550,000 in developing countries (Twible and Henley 2000). 4.5 Assessing local needs and resource analysis There is no one model of health services delivery that will suit all circumstances. What is required is a needs-based model developed in response to local circumstances. Some early programmes of CBR were not successful because they did not undertake any research on the self-perceived needs of the target population or the availability of local resources (Helander 2000; Thomas and Thomas 1999). Before determining what type of primary health care or rehabilitation service is required it is important to consider the following (Kay et al. 1994; Thomas and Thomas 1999; Twible and Henley 2000; World Health Organization 1995a):

ƒ

ƒ

ƒ

Health needs o Types of frequent disabilities eg movement, sight, learning, behavioural o Causes of those disabilities eg disease, injury, congenital o Differing levels of severity o Measures already in place to prevent those disabilities Cultural context o The situation of the disabled person and their family o Extent of participation: exclusion from social activities / participation o Factors influencing participation / exclusion – both opportunities and barriers o Expectations of disabled peoples, carers and community – priorities o Health seeking behaviour / beliefs Health service provision o Rehabilitation services already in existence o Disability prevention and rehabilitation services needed, but not currently provided o Government philosophy and health service plans – political, economic and social positions o Accessibility of general health services – eg screening, immunization o Availability of existing local resources

It is important to identify and understand the current situation and map services; then to identify with all those concerned what gaps exist and what is required. Only then can consideration by all relevant parties be given to what health service provision is most appropriate. This needs to take account of feasibility, accessibility and acceptability issues. None of this can be done without consideration of resource constraints, financial, facilities / equipment, education, transport, and manpower, including level of skills and competency required to deliver what is necessary.

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5.0

Community-based rehabilitation

This section looks specifically at CBR in terms of its organisation, delivery and evaluation. 5.1 Funding and accountability Both Governmental and Non-Governmental Organizations (NGOs) may fund or be in charge of CBR programmes, however, it is the responsibility of the Ministry of Health to provide prevention and medical rehabilitation services (World Health Organization 1995a), with other relevant ministries contributing as appropriate. In addition, while NGOs may fund CBR, states still have a duty to ensure full compliance with human rights laws both in the public and private sectors, to provide equitable treatment for disabled people (Office of the High Commissioner for Human Rights 2003). Most CBR services are provided by NGOs, which are based in urban areas, with little dispersal to rural areas (Helander 2000). CBR has developed in response to the need for governments and other non-governmental agencies to use their limited resources to provide better coverage. As such the way in which CBR has developed has in part been in response to the agendas of the donors, funders and politicians, as well as the people with disabilities and their carers and communities (Thomas and Thomas 1998). 5.2 Organisation CBR models appear to be top-down or bottom-up. The former is an extension of the traditional institution-led model of rehabilitation. Leadership and control extends from the government or NGO through professionally led rehabilitation services seeking the participation of people in the community, with the services pre-determined by the professions (Lysack and Kaufert 1994; United Nations Economic and Social Commission for Asia and the Pacific 1997). The bottom-up model reflects more the origins of CBR where services are planned, managed and provided by members of the local community (Lysack and Kaufert 1994; Thomas and Thomas 1999). This acknowledges that the local communities have their own resources, skills, abilities and understanding of local circumstances, which are significant strengths to be utilised. This can be seen to be more flexible and responsive to local needs, facilitating ownership and acceptance, thereby enabling change. Many CBR programmes have developed as a result of professional leadership, often through health care personnel working with NGOs, drawing together relevant expertise and financial backing. Given that CBR should be designed to meet local needs there are many models that exist. 5.3 CBR personnel It has been proposed that there are three levels of service personnel required for CBR (Helander 1999; Thomas and Thomas 2003a), who need to be overseen by a CBR manager to ensure coordination of services. These are: • Level one: grass roots workers delivering services in a community - CBR workers • Mid-level: workers who organise and support level one workers: Mid-level rehabilitation workers (MLRW), therapy assistants or supervisors • Level three: professionals who refer users to the community or to whom referrals can be made from the community, such as physical therapists.

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This structure may be used by CBR projects, but not necessarily. How programmes are structured and who is involved may well be dependent on the individuals, agencies and organisations involved in establishing the programmes. Community health or development workers may be the main contact for rehabilitation services at a local level, dependent on which ministry or organisation is responsible (World Health Organization 1995a). They may act as volunteers or be employed. Their training should be provided locally and based on the needs of the project and local people (Wirz 2000). The WHO manual Training in the Community for People with Disabilities is well established as a resource for community workers and families involved in CBR programmes, or wanting to establish them (Helander et al. 1989). Additionally, there are a number of well-known and respected texts, such as: ¾ Disabled village children. A guide for community health workers, rehabilitation workers and their families. (Werner 1987) ¾ Nothing about us without us: developing innovative technologies for, by and with disabled persons. (Werner 1998) ¾ Prejudice and Dignity - An Introduction to Community-Based Rehabilitation. (Helander 1999) ¾ Community-Based Rehabilitation and the Health Care Referral Services. A guide for programme managers. (World Health Organization 1994) In addition the Asia Pacific Disability Rehabilitation Journal has published a number of special issues dedicated to CBR. These include the recent Manual for CBR Planners (Thomas and Thomas 2003b). CBR workers are key in the implementation of CBR. They are usually the main person in contact with the family. They are able to: ƒ act as local advocates on behalf of people with disabilities and their families with the health services personnel ƒ provide liaison and continuity of care in the community on behalf of professionals e.g. continued supervision of home programmes ƒ act as directors of community initiatives to remove social and physical barriers that affect exclusion e.g. increased social acceptance (Kay et al. 1994) ƒ provide a positive role model for service users if they themselves have a disability. Concern has been expressed at what volunteer CBR workers can achieve. What is it realistic to expect of them without reward, recognition and status? What incentive exists for them to attain higher level skills without ‘rewards’ (Vanneste 1997)? However, the nondisabled volunteer can be critical to the implementation of many CBR programmes. One example is the use of women through the Indonesian Women’s Family Welfare Movement (PKK), which has an infrastructure that includes the national and village level. The success of this initiative builds on the philosophy of mutual self-help that is part of the traditional culture (Lysack and Kaufert 1994). Several countries have resorted to paying volunteers an allowance and refer to them as CBR workers or teachers (as in Malaysia), discarding the term volunteers. However, the term CBR teachers has been misinterpreted by some, including the public, to mean that CBR provides academic programmes for children with disabilities, particularly those with learning disabilities (Kaur R, personal communication 2003).

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Concerns also exists where the training of CBR workers has focused purely on the concepts of CBR, motivating the community and communication, but not on developing rehabilitation skills (Vanneste 1997). This highlights a valid area of contribution for physical therapists and other members of the health care team to provide comprehensive and inclusive training and ongoing support and case management, including goal setting, defining interventions and evaluation and monitoring for CBR workers. There appears to be less consensus on the role of mid level workers (Wirz 2000). The extent to which they act as supervisors of CBR workers, project monitors or managers is variable and therefore they need training that is adaptable to how they are going to work on individual projects. Professionals involved at the third level of service provision can include, but are not limited to: doctors, nurses, physical therapists, occupational therapists, counsellors, support staff, orthotists / prosthetists, and technicians. As described earlier they are often found at the provincial or national level, with few at community or district level. They are often seen as resources to refer disabled people and their families to if the first two levels of workers need additional advice or are unable to meet the needs identified. This provides access to specialist advice and supervision. Professionals involved in CBR programmes need to be appropriately educated to work with disabled people and communities in a way that may not have been reflected in their professional education (Wirz 2000). This is discussed further in section 6 covering the implications for physical therapists. 5.4 Multi-professional and multi-sectoral collaboration Multi-professional, inter-agency and cross-sectoral collaboration are essential in delivering effective services responsive to the needs of local populations. There needs to be an integration of health, education, social care, labour and employment policies at a national and local government level. In terms of multi-professional collaboration it is also necessary between general health service staff and rehabilitation staff (World Health Organization 1995a). The implications for the roles of physical therapists, arising from any model of health service delivery, will be dependent on the availability of other professions and support staff, as well as the extent of integrated inter-agency and cross-sectoral working relationships. This includes working relationships with Disabled People's Organisations. The availability, or not, of some professions in a given environment and setting could have implications for the potential merging of roles in order to maintain a client-focused attention to needs (Kay et al. 1994). Collaboration is not simply about recognised professional groups but also the cooperation between western and traditional health care workers. This concept was promoted early on (World Health Organization and UNICEF 1978), but the extent to which it has become a reality remains questionable. While the role of the traditional health care worker is seen to have many advantages in taking health care to the local community there is a risk in managing expectations of those who seek to provide a service based on the principles of developed health care systems. The local community may no longer accept the traditional worker and see them as a lower form of provision and a reflection of lack of commitment to improve health care provision (van der Geest et al. 1990).

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Other facets of collaboration and cooperation are derived from the multi-sectoral working required to meet the needs across all domains that impact on quality of life, not simply health (United Nations Economic and Social Commission for Asia and the Pacific 1997). As stated… “the basic concept inherent in the multi-sectoral approach to CBR is the decentralization of responsibility and resources, both human and financial, to community-level organizations. In this approach governmental and nongovernmental institutional and outreach services must support community initiatives and organizations.” (United Nations Economic and Social Commission for Asia and the Pacific 1997, page 1)

5.5 Evaluation of CBR Evidence for the clinical and cost effectiveness of different models of primary health care and specifically CBR are limited. This is not limited to the contribution of physical therapy, but to the delivery of these health services in general and the role and contribution of different health care workers. A summary of several CBR programme evaluations can be found in Prejudice and Dignity (Helander 1999). However, this is a selective summary rather than a comprehensive review of different programmes. A WHO report (World Health Organization 1981) acknowledged the need to evaluate CBR and yet there has been little progress with this. Where evaluations exist the focus has primarily been on process-orientated outcomes rather than changes in health or social status for individuals or community improvements. Additionally, WHO's guidance on evaluation (World Health Organization and International Disability Consortium 1996) was primarily targeted at those participating in CBR programmes to help them understand more about the dynamics of their own programmes as opposed to an external objective evaluation. Both approaches have their place in understanding more about the effect of CBR programmes. There is also a lack of descriptive research describing different CBR programmes in sufficient detail to understand what actually happens. This covers activities and services provided as well as experiences from the perspective of disabled people, their families, CBR personnel, health care professionals, those involved with educational, employment or other areas of activity and others in the community (Miles 2003). This lack of descriptive and observational research therefore hinders understanding of the effectiveness of CBR programmes and evaluative research. This is further hindered by the lack of widely disseminated and accessible information. While evidence-based practice is driving health services in developed countries, facilitated by the advancement of health informatics and the wealth of information available via the Internet (Bury 1998), lack of access to information resources is a barrier to information sharing in most developing countries. Research cannot happen without appropriate funding and funding for research in this field is difficult to attract (Miles 2003). Stineman (2002) has proposed four guiding principles for CBR that should inform future evaluations: 1. Seek the equalization of opportunities and support for human rights. 2. Ensure relevance of the program activities to local culture, circumstances, needs and priorities. 3. Achieve a multi-sectoral approach through collaboration among different international groups, governmental agencies, and non-governmental partners

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4.

including organisations of people with disability, community organisations and groups, and national NGOs. Move toward achieving sustainability, efficiency, and effectiveness.

Further recommendations are made for standardising report writing and the development of standard indicators for planning and evaluation that look at input, process and output (Stineman 2002). Progress with this approach could provide valuable information in the future. In addition, it is important to acknowledge that collaboration alone cannot bring about change and that cooperation is vital to success. A recent qualitative review of the impact of CBR programmes in three countries (Ghana, Guyana and Nepal) on the quality of life of disabled people found that they had a positive effect on self-esteem, empowerment and influence, self-reliance and social inclusion. However, they had limited impact on physical well-being, and on confidence and trust in society regarding human rights fulfilment (World Health Organization and Swedish Organizations of Disabled Persons International Aid Association 2002). A concern arising from the research was the extent to which disabled people are still viewed as beneficiaries of the programmes rather than active participants. A number of CBR programmes had been experienced by the disabled people / parents interviewed and the researchers found that there were a number of initiatives that were perceived to be most useful: ¾ Social counselling ¾ Training in mobility and daily living skills ¾ Providing or facilitating access to loans ¾ Community-awareness raising ¾ Providing or facilitating vocational training / apprenticeships ¾ Facilitating information for local self-help groups, parents' groups and DPOs ¾ Facilitating contacts with different authorities ¾ Facilitating school enrolment (school fees and contacts with teachers) (World Health Organization and Swedish Organizations of Disabled Persons International Aid Association 2002). Whilst acknowledging the limitations of the research this list provides a useful reminder of the multi-dimensional nature of CBR encompassing different social domains, not just health. Evaluating CBR programmes poses challenges for researchers, universities, governments, programme funders and those involved in delivering the services, as well as the service users. Small pilot projects can provide insights into services, but larger scale evaluations are required, necessitating significant funding.

6.0

Implications for physical therapy

This section discusses the implications for physical therapy arising from the literature and in response to the findings of the WCPT survey on CBR.

6.1 Professional autonomy and status If physical therapists want to protect their domain of expertise and see themselves as required to be the primary care givers in direct contact with those with disabilities then they risk mystifying rehabilitation and making it inaccessible to those most in need, especially in developing countries (Helander 2000). To ignore the view that those with disabilities are the “legitimate and rightful arbiters in deciding what is best for their lives” (Lang 1998, page 8)

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again does nothing to support consensus building in providing appropriate and accessible health care services. These valid perspectives pose challenges for the profession. It would appear that institution or private based physical therapy is the preferred option for the majority of physical therapists, usually associated with higher professional status (Lysack and Kaufert 1994; Twible and Henley 2000). In these circumstances the emphasis is on professional skills and expertise lying with the professional. This contrasts with the way in which community based physical therapists are conferred with a lower status and a focus on transferring skills to empower other workers and families (Twible and Henley 2000). In addition, emphasis in urban centres is primarily on cure rather than rehabilitation or maintenance so the health gains and improvements achieved by the health professionals are perceived to be greater (Lysack and Kaufert 1994). The influence of the disability movement and services such as CBR can be seen to pose threats to the status of the professional if ownership and leadership sit with the person with a disability and the community. This is occurring in parallel to efforts to enhance professional autonomy and the development of the profession in many developing countries and could be seen as a source of tension (Lysack and Kaufert 1994). Part of being a professional is being perceived as an expert with a particular domain of knowledge. Historically this has meant that a professional's knowledge, skills and judgement have rarely been questioned. However, a community-orientated approach sees a significant shift of control from the professional to the client / family. While the professional is still seen as having an expert body of knowledge, they are far more a resource for clients and families (Twible and Henley 2000). Whilst the development of evidence-based practice is not without its critics, it has sought to challenge the profession-centric model of practice to one that creates a more balanced relationship between professionals and clients through promoting shared decision-making (Bury 1998). Primary health care may not have been embraced by some health care professionals who potentially see it as providing negative incentives for them professionally. Especially if the focus is on prevention, when their skills and main business have been curative, often with the opportunity for additional private income (van der Geest et al. 1990). However, physical therapists have always had a focus on prevention and are keen to develop this area of practice further. All of the above pose dilemmas for a developing profession. In many countries where the profession is relatively new, or is still emerging, part of furthering its progress has been to ensure academic credibility and standing in the universities where education takes place. To achieve this may have required a strong biomedical focus to the education and research programmes. While developing a more client-centred community orientated education programme may be appropriate this needs to be done with an awareness of the education and practice environments.

6.2 Physical therapy roles Physical therapists undertake, or have the potential to undertake, a number of roles in primary health care and CBR dependent on local cultural and socio-economic circumstances. These have been identified as (Bury 2003; Henley and Twible 1999; Kay et al. 1994; Twible and Henley 2000; United Nations Economic and Social Commission for Asia and the Pacific 1997; World Confederation for Physical Therapy 2003; World Health Organization 1995a): ƒ Preventing disability and deformity

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ƒ ƒ ƒ ƒ ƒ ƒ ƒ ƒ ƒ ƒ ƒ

Educating / training disabled people to move around Promoting self-care Educating, training and transferring skills to other staff Consultancy, advice, support and supervision to other health care personnel Health promotion and disease prevention Curative and rehabilitation services Instigators of CBR services Team leaders and managers Providers of direct care Advocates for disabled people, local communities as well as the profession Advisers to governments, NGOs and local communities on establishing CBR programmes

There are a number of significant differences in emphasis of role between institution-based and community-based physical therapists (Twible and Henley 2000) as outlined in table 2. Table 2: Differences in physical therapy roles Physical Therapy in Institutions • • • • • • • •

Direct service provision to the client Predominantly 1:1 therapist:client ratio Person receiving services usually addressed as patient Rarely works in groups Allocates therapy time according to individual needs Ideal to care for a few Perceived higher professional status Can focus on a strong biomedical model, although attitudes and approaches are changing

Physical Therapy in CBR • • • • • • • • •



Mainly indirect 1 therapist:to a given population Person receiving services addressed as client Often works in groups Allocates time based on the needs of the population Good basic care to all Perceived lower professional status Uses a strong social model Teaches / trains local health workers and families to carry out day-to-day therapy Acts as an expert resource

It seems that flexibility and innovation are required to ensure that physical therapists are adaptable and used to maximum effect in any given situation. Ensuring that physical therapists are competent in transferring their skills and knowledge to others, as well as recognising this as a legitimate professional activity, needs to be incorporated into professional education programmes (O'Toole and McConkey 1998). This is particularly pertinent in the primary health care setting and in those countries with very limited financial investment in health care and specifically physical therapy. In terms of professional roles and advocacy O’Toole gave a salient warning in 1995 that: “If … the vision and courage to tread new paths are lacking, then the danger is that more conferences will be held, more declarations will be written, more slogans devised, and still 98% of the disabled population will remain totally unaware of the international concern being voiced on their behalf” (O'Toole 1995, page 319).

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Thereby suggesting a requirement to challenge the status quo, professional domains, and service models and action to address the deficiencies. Kay et al (1994) suggest that the direct use of physical therapists in CBR would serve to institutionalise the efforts of CBR and negate the cost-effective self-help values of the CBR movement, introducing an approach contrary to the basic philosophy. Given the variety of roles that physical therapists can take on in CBR it is important to identify the skills required to fulfil these roles. Some of these may not have been covered in professional education programmes, such as competency in community organisation and development (Kaur 2002). In addition, a change of approach may be required from the physical therapist as expert to the physical therapist as a resource that provides advice and support when asked by the community, rather than stepping in when they decide it is required. In reviewing the role and contribution of physical therapists it is important to be mindful of the consequences for other health care workers involved, including CBR workers and other professional groups. Also, that the other stakeholders, including DPOs, have a valid contribution to make in assisting the profession to review its role. Any review needs to consider the needs of individual service users and also be recognised within National Service Frameworks for CBR, where they exist. 6.3 Pre and post qualifying education of physical therapists To date, physical therapy education has tended to focus on institution-based learning environments which may not necessarily engage students with the potential for working in rural and community settings once qualified (Twible and Henley 2000). This is not universal and there are some qualifying programmes which have a substantial primary care orientation to their curriculum (Futter 2003; Twible and Henley 2000). Nor is this situation limited to physical therapy (Alwan and Hornby 2002). Concern also exists over the provision of high quality and relevant continuing professional development opportunities post qualification (Alwan and Hornby 2002). With a focus on CBR, O'Toole and McConkey (1998) identified the need for qualified professionals to receive appropriate education and training on topics such as handling groups, meeting the needs of adult learners and the preparation of learning resources. Preparing physical therapists to work in community settings with local communities, disabled people and their families may also require changes to the curriculum. With a strong emphasis on institution-based learning there is often little exposure to different health care settings beyond the predominantly urban areas where these institutions are located (Twible and Henley 2000). As highlighted by Twible and Henley (2000) preparing physical therapists for community orientated services requires philosophical, organisation, conceptual and structural changes in education provision. Along with the differences between institutional and community based services already identified they highlighted the differences in resources where CBR models are dominated by low technology, low cost, the use and adaptation of existing resources and the use of local human resources; a stark contrast to institutional settings. A recent study from South Africa (Futter 2003) examined students' experiences of working in a disadvantaged local community to determine gaps in the pre-qualifying curriculum so that changes could be identified and implemented to better prepare students for this practice context. The researchers found that students were insufficiently aware of social, political,

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economical, cultural and religious differences influencing the communities and how this impacted on the health of disabled people and their carers. Other gaps related to levels of knowledge concerning the national socio-political environment, human rights issues and health behaviours and beliefs. Students did however rate highly the experience gained. Depending on the local community setting there can also be particular issues concerning the safety of any health worker. Since education changes were implemented in the curriculum there have been more physical therapists that on qualification chose to work in community and peri-urban areas, often requiring that they worked on their own and in quite isolated areas. Further evaluation of the outcomes resulting from the curriculum changes in this physical therapy programme is planned. It is interesting to note that the model of education in South Africa had been traditionally modelled on that of the UK, which while developing excellence, was probably not equipping physical therapists for their local context, raising a potential mismatch between preparation for practice and local needs. Developments in primary health care in South Africa have now led to the requirement that physical therapists must complete one year of community service in areas that have historically been under-serviced (Government Gazette 2002, cited in Futter 2003). This is of particular note in developing and facilitating the migration of physical therapists internationally while ensuring fitness for purpose in terms of the needs of national and local health service provision. Acknowledging the role of physical therapists in skills transference and the education of others they need to be prepared with the appropriate skills and knowledge of educational approaches to achieve this end effectively (Twible and Henley 2000). Acquisition of appropriate knowledge and values to orientate professional behaviour towards counselling and collaboration with families and communities, promoting the concepts of independent living and full participation is also required (World Health Organization 2001a). The previous section (6.2) discussed the variety of roles that physical therapists can take on in CBR and in doing so also provided pointers for educational programmes in terms of skill acquisition and competencies. There is a number of primary health care and community orientated service delivery models and physical therapists need to have an understanding of these and their relative strengths and weaknesses for a given context. What appears to be important for success is the knowledge and understanding they have of their local environments and the socio-political, economic and cultural factors that influence them. Recognising the need to better orientate the physical therapy curriculum to primary health care and the different models of health services delivery that operate worldwide revisions have been made to the Declaration of Principle on Education produced by WCPT (appendix 2).

7.0

Conclusions

This paper has set out the context of practice for physical therapists as it relates to primary health care and CBR, with an emphasis on CBR. The literature reviewed does not include all published work, as it is not a systematic review, but it is hoped that its breadth will assist physical therapists in developing primary health care and specifically CBR services. CBR was developed as a particular model for meeting the rehabilitation needs of developing countries. Its application in developed nations therefore needs careful consideration of its applicability to the social and cultural environment that predominates (Lysack and Kaufert 1994).

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As identified, there is a dilemma for the profession in striving to balance the need for enhanced professional status and recognition while achieving a more client or communityorientated focus. This poses challenges for practice and education. Experiences of health sector reform again vary worldwide, and it is clear that there is no one template or model to follow, due to the diverse circumstances in different countries. However, there should be an ethos of sharing experiences and learning from others. How health services are financed and the extent to which they provide quality cost-effective services are key components of reform. One of the elements of any reform or evaluation should be a review of how the human resources are used efficiently and effectively. This requires consideration of the education, training and scope of practice of different recognised professions, as well as consideration of new models and roles (Alwan and Hornby 2002). Recognising the developments in primary health care and CBR and the need to support these, while also supporting the development of the profession, WCPT has developed a Declaration of Principle on Primary Health Care and a Position Statement on CBR. Both of these were approved at the 15th General Meeting of WCPT in 2003 and are provided in appendix 2. In addition, amendments were approved to the existing Declaration of Principle on Education, to better prepare physical therapists for the changing context of practice.

Acknowledgements The author is grateful to Liz Carrington for early discussions in developing the paper and for comments on the draft version. In addition, the following people are also thanked for comments on the draft: Mary Martin, Gubela Mji, Ranjit Kaur, and Inger Brøndsted, which have been used in developing the final paper. Any errors that remain are purely the responsibility of the author.

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Primary Health Care and Community Based Rehabilitation: Implications for Physical Therapy October 2003 Page 28 of 33 United Nations. (1966) International Covenant on Economic, Social and Cultural Rights. New York: United Nations. United Nations. (1983) World Programme of Action Concerning Disabled Persons. United Nations Decade of Disabled Persons, 1983-1992. New York: United Nations. United Nations. (1984) Convention against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment. New York: United Nations. United Nations. (1989a) Convention on the Rights of the Child. New York: United Nations. United Nations. (1989b). International Meeting on Human Resources in the Field of Disability. International Meeting on Human Resources in the Field of Disability, Tallinn, Estonian Soviet Socialist Republic, USSR: Muscular Dystrophy Association of Slovenia. United Nations. (1994) The Standard Rules on the Equalization of Opportunities for Persons with Disabilities. New York: United Nations. United Nations Economic and Social Commission for Asia and the Pacific. (1997) Understanding Community-Based Rehabilitation. UNESCAP, www.unescap.org/decade/cbr.htm [Accessed 16/7/2] van der Geest S, Speckmann J, Streefland P. (1990) Primary health care in a multi-level perpsective: towards a research agenda. Soc Sci & Med 30(9): 1025-1034 Vanneste G. (1997) CBR in Africa: a critical review of the emerging scene. Asia Pacific Disability Rehabilitation Journal 8(2): 34-37 Vanneste G. (2001) Editorial: Community Based Rehabilitation: What is it? Disability World [bimonthly web-zine of international disability news and views] (6): Accessed 27/28/2002 http://www.disabilityworld.org/2001-2002_2001/news/cbreditorial.htm Werner D. (1987) Disabled village children. A guide for community health workers, rehabilitation workers and their families. Palo Alto, California: Hesperian Foundation. Werner D. (1996) The life and death of primary health care: the 'McDonalization' of Alma Ata, Russia. Pacific Health Dialog 3(1): 68-73 Werner D. (1998) Nothing about us without us: developing Innovative Technologies for, by and with disabled persons. Palo Alto, California: Health Wrights. Wirz S. (2000) Training of CBR personnel. Asia Pacific Disability Rehabilitation Journal Selected Readings Series 1: CBR in Transition: 96-108 World Confederation for Physical Therapy. (2003) Primary Health Care and Community Based Rehabilitation. An overview of WCPT's work and plan of action. 15th General Meeting Papers, Agenda Item 10.5. London: World Confederation for Physical Therapy. World Health Organization. (1976) Resolution on Disability Prevention and Rehabilitation. Geneva, Switzerland: World Health Organization. World Health Organization. (1977) Formulating strategies for Health for All by the year 2000. (Health for All Series, No.2). Geneva, Switzerland: World Health Organization. World Health Organization. (1981) Disability prevention and rehabilitation. Report of the WHO Expert Committee on Disability Prevention and Rehabilitation. Geneva, Switzerland: World Health Organization.

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Appendix 1: Selected websites of interest 1. International Organisations International Labour Organisation: http://www.ilo.org/public/english/employment/skills/disability/ United Nations http://www.un.org United Nations Persons with Disabilities: http://www.un.org/esa/socdev/enable UNICEF: http://www.unicef.org/ UNESCO (United Nations Educational, Scientific and Cultural Organization): http://www.unesco.org/ World Health Organization http://www.who.int Disability and Rehabilitation: http://www.who.int/ncd/disability/index.htm Primary Care: http://www.euro.who.int/eprise/main/WHO/Progs/PHC/Home International Review of CBR: http://213.203.162.14/old_sito/english/homeenglish.htm Declaration of Alma Ata: http://www.who.dk/AboutWHO/Policy/20010827_1 2. Disability Organisations Action on Disability and Development: http://www.add.org.uk Disabled Peoples International: http://www.dpi.org Handicap International: http://www.handicap-international.org Healthlink Worldwide: http://www.healthlink.org.uk/ Institute of Independent Living: http://www.independentliving.org International Disability and Development Consortium (IDDC): http://www.iddc.org.uk Rehabilitation International: http://www.rehab-international.org/ Save the Children: http://www.savetehchildren.org World Institute on Disability: http://www.wid.org/ 3. Resources / Publications Asia Pacific Disability and Rehabilitation Journal: http://www.aifo.it/english/apdrj/apdrj.htm CBR Forum: http://dag.virtualave.net/cbrforum.htm Disabled Village Children (Werner D): http://www.dinf.ne.jp/doc/english/global/david/dwe002/dwe00201.htm Hesperian Foundation publications: http://www.hesperian.org Nothing About Us Without Us (Werner D): http://www.dinf.ne.jp/doc/english/global/david/dwe001/dwe00101.htm Prejudice and Dignity (Helander E): http://dag.virtualave.net/p_d.htm Source (Source is an international information support centre designed to strengthen the management, use and impact of information on health and disability): http://www.asksource.info/

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Appendix 2: WCPT's policy statements Declaration of Principle: Primary Health Care Access to primary health care services is key to ensuring that health care is responsive to the needs of individuals, their carers and communities. The World Confederation for Physical Therapy (WCPT) advocates the provision of primary health care that is mindful of local cultural, socio-economic and political circumstances, providing equitable access for all to effective services. WCPT supports an approach that is flexible and innovative in providing models of service delivery; that offer care developed in response to local needs. It recognises that there are principles of best practice that should be evident in any model of health services delivery and that these include, but are not limited to: i. health services are equally accessible to all ii.

local communities and individuals are partners involved in health service delivery, planning, operating and monitoring

iii.

the model is developed in response to an assessment of local needs, mindful of the ethical use of resources

iv.

services are developed taking account of local cultural and social norms

v.

multi-professional, inter-agency and inter-sectoral collaboration at all levels is advocated

vi.

in acknowledging the roles that different health care personnel are able to contribute to service delivery, where appropriate, physical therapists should contribute to their education and ongoing development

vii.

where appropriate, communities and individuals are supported to be self-reliant

viii.

while rehabilitation may be the area of greatest need, health promotion and disease prevention should also be addressed and treatment / intervention provided as necessary

ix.

relevant research and evaluation findings are implemented ensuring best practice

x.

monitoring and evaluation of services is in place with mechanisms for review and modification

Physical therapists have an important role to play in primary health care as: ƒ direct and indirect providers of services

ƒ

members of multi-professional teams

ƒ

consultants to Government, Non-Governmental Organisations (NGOs) and Disabled People’s Organisations (DPOs)

ƒ

developers, implementers and managers of services

ƒ

educators of other health care personnel and support staff

Physical therapy entry level education and continuing professional development opportunities need to adequately prepare and equip physical therapists to work in a variety of settings able to deliver services in both urban and rural communities, acknowledging their roles as facilitators and educators of other health care personnel, necessary for the attainment of physical therapy and client goals. Physical therapists and national physical therapy associations are encouraged to work with Governments, NGOs and DPOs to promote and facilitate the development of primary health care and the contribution of physical therapists, encompassing the four core elements of promotion, prevention, treatment and rehabilitation.

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Position Statement: Community Based Rehabilitation Community based rehabilitation (CBR) has been defined as “a strategy within community development for the rehabilitation, equalization of opportunities and social inclusion of all children and adults with disabilities. CBR is implemented through the combined efforts of people with disabilities themselves, their families and communities, and the appropriate heath, education, vocational, and social services." (Draft Joint Position Paper from ILO, UNESCO, UNICEF and WHO, 2002) 1 The World Confederation for Physical Therapy (WCPT) supports the development of CBR as a means of empowering people with disabilities to maximise their physical, mental and social abilities. It recognises that community change is often necessary to promote and fulfil the human rights of people with disabilities to become active participating members of their communities. The WCPT recognises that CBR extends beyond health and encompasses domains such as educational, social, vocational and economic rehabilitation. Inter-agency, cross-sectoral and multi-professional collaboration at all levels is vital in supporting this comprehensive approach to rehabilitation. Health care professionals work with local communities and individuals as partners involved in service planning, operation and monitoring Physical therapists are equipped to work in both urban and rural settings and have an important contribution to make in CBR: • • • • •

By providing interventions aimed at health promotion, disease prevention, treatment and rehabilitation By educating and transferring skills to other staff, carers and the community to achieve the fulfilment of physical therapy and client goals Through consultancy, advice, support and supervision to other health, education and social care personnel As initiators and managers of programmes As policy advisers to Governments, Non-Governmental Organisations (NGOs) and Disabled People’s Organisations (DPOs)

Physical therapists are prepared to fulfil these roles through education and continuing professional development opportunities. The WCPT calls on national governments and non-governmental organisations to ensure integration in policy development to support CBR. It further calls for equal status to be conferred on those who work in rural communities with those based in urban institutions. (Approved at the 15th General Meeting of WCPT, June 2003, pending confirmation of the minutes by the WCPT Executive Committee)

1

International Labour Organization, United Nations Educational Scientific and Cultural Organization, United Nations Children's Fund, World Health Organization. Community-based rehabilitation (CBR) for and with people with disabilities. Draft Joint Position Paper. Geneva, Switzerland, 2002. Draft prepared for the Helsinki Consultation in May 2003, now being under revision.

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Declaration of Principle: Education Physical Therapy education is a continuum of learning beginning with admission to an accredited physical therapy school and ending with retirement from active practice. 1. 2. 3. 4. 5.

6.

7.

8.

9. 10. 11. 12.

13.

14.

15.

The goal of physical therapy education is the continuing development of physical therapists who are entitled, consistent with their education, to practice the profession without limitation. The curricula for physical therapy education should be relevant to the health and social needs of the particular nation. The term accredited is used in relation to physical therapy education to describe a programme which is regularly evaluated according to established educational standards. The first professional qualification should represent completion of a curriculum that qualifies the physical therapist for practice as an independent professional. An integral component of the curriculum for the first professional qualification is direct clinical experience under the supervision of appropriately qualified physical therapists. This clinical education will involve gradual access to responsibility as skill and experience increase. The curriculum should equip physical therapists to practice in a variety of health care settings including, but not limited to, institutional, industrial, occupational and primary health care that encompass urban and rural communities. Consideration should also be given to preparing physical therapists to work in environments that reflect the health care funding models that operate in different countries. The curriculum and continuing professional development (CPD) opportunities should prepare physical therapists with knowledge of educational approaches to facilitate the supervision, education and transference of skills to others. Life-long learning and professional development is the hallmark of a competent physical therapist. It should be recognised that learning and development may take place in a variety of ways and is not limited to attendance at formal courses. Physical therapists should be equipped for evidence-based practice. Research methodology should be included in entry-level programmes. Physical therapists should be encouraged to undertake post-graduate education in physical therapy or related fields for advanced professional development. Professional physical therapy education should be conducted by physical therapist-educators able to transfer knowledge and skills about physical therapist examinations / assessment / evaluations, and interventions / treatment and their outcomes, including the critical analysis of theories and methods of physical therapy. Basic and foundational sciences (e.g. anatomy, histology, physiology, imaging, etc) and research methodology should be taught by individuals with appropriate education and / or credentials in the area. Where national physical therapy associations have adopted practice specialisation, the process to become recognised as a specialist should meet the academic and practice rigors of such a qualification. The goals, content, format and evaluation of the education programmes provided for physical therapists are the responsibility of the faculty but should involve the active participation of the national physical therapy association.

Note: Definitions Declarations of Principle record the Confederation's agreed stance on issues affecting the practice of physical therapy internationally and have a two-thirds majority vote, thereby becoming policy for all member organisations. Position Statements reflect the Confederation's preferred opinion on issues affecting the practice of physical therapy and have a simple majority vote. Such statements are available to Member Organisations to adopt, fully or in part.

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